Dying is something we all do alone. There may be others present with us at the moment of death yet the experience or act of death seems subjective. It is something which no one can do for us. The same could be said of thinking or feeling. I know others think and feel mostly because they tell me they do. I cannot think or feel for them. Neither can I die for them but I would like to know what dying is like for someone! I would like to know their subjective experience. Just like their thoughts or feelings, they must tell me. And they can use something besides words to communicate it to me. Presence can frequently be more articulate.
This Blog is my attempt not only to be with Mollie Summerland as she dies, but to try to get as close to her subjective experience with her death as possible. I have regretted not being able to talk to my father about his experience with his dying. Although I was close to him neither of us had the necessary courage or intimacy to share such a personal experience. Twenty-five years have passed since his death and I have grown or changed since then. Today I believe Mollie and I have the necessary courage, honesty and intimacy for me to be with her as much as possible not only in the objective world of her process but also in the subjective one of her dying. I write that because I am closer to Mollie and more open with her than with anyone I have ever known.
Much is written about the objective and subjective world of a survivor of a loved one’s death. Ken Wilber’s Grace and Grit has been an example of this theme for me. In the end, the subjective aspect of this work is still Ken and not his dying wife Treya. As diligently as I may try to document Mollie’s process it must still be through my eyes and perceptive conduits. So, this Blog must and will also contain my experience as much as I am able to scribe and describe it. Yet I shall attempt to aim at a different target than Mr. Wilber’s publication. I appreciate the need for the two virtues of the title. I may need all of the Grace I can open to and all of the Grit I can muster.
Mollie was diagnosed with cervical cancer in the Fall of 2012 and her choice of intervention at first was surgery. She underwent a hysterectomy the first of November that year. The report was the operation removed most of the cancerous cells. The prognosis looked good. Chemotherapy or radiation was suggested. Her decision was to decline that intervention as she understood there would only be about a 5% decrease in the probability of recurrence. “Not good odds” she remarked. “Right now, I feel better than I have in over a year so I want to be able to enjoy my time feeling good rather than deal with the effects of further treatment.” I supported her choice and personally thought it wise.
I have known Mollie for over 20 years. We spent about 8 years as lovers and romantic partners living together. We developed a deep intimacy and a spiritual partnership. We separated as lovers somewhere near the beginning of the millennium but the spiritual and human partnership continued through the going apart even through a 2 or 3-year period we did not see each other and spoke on the phone or via e mail infrequently. The closeness has deepened and has continued to deepen until today. When she first told me of her diagnosis I felt little emotional reaction to her words although I was shocked at the information. I dialogued the situation often with her in person or by telephone as she was deciding her choices. (More to the point I listened while she thought out loud. I became her sounding board.) After the surgery, I visited her almost daily in the hospital and when she was released she spent several days convalescing and recuperating at my home. The recovery was very painful for her and only then did my heart begin to feel the pain of watching a dear friend in such physical discomfort. Even with medications the pain abated only slightly. And the bowels and urine excretions were painful. Those systems were greatly out of balance. Those nights I slept with “one eye open” listening toward Mollie’s bedroom in case she needed something or I had to enlist further medical assistance. It was an exhausting few weeks for me. Most of the exhaustion was not due to the physical demands placed on me but on my heartbreak of watching one I love, suffer, and how helpless I felt.
She returned to her apartment sometime around Thanksgiving and continued to live there until the First of March 2013. Despite numerous doctor appointments and other healing endeavors her condition continued to deteriorate. The pain increased and her general condition deteriorated. Or at least it seemed that way to her and to me when I visited her. Yet she remained optimistic as the doctors told her recovery from this type of surgery often required many months. Yet both of us sensed something was not quite right. When she vacated her apartment March 1st she returned to my home and stayed with me until March 8th when she went to Oceanside to visit with Glenna and Gene. She planned on returning here late in late April. On April 12, she called me and said her pain was unbearable and could I pick her up at the airport the following day so she could return to her doctors as quickly as possible. This is where this Blog begins.
As a final note to begin. (A final beginning?) Mollie intended to move to South America sometime around the first of March instead of seeking sanctuary at my home. But the reoccurrence of the disease eliminated that possibility. When she went to visit friends in Oceanside the intention was also to travel to Arizona and visit other friends. Her lack of vitality and increased pain also curtailed that trek. So, these months seem to have been for her an exercise of giving up more of her desires and adapting to what life is presenting. Not resisting or misinterpreting life’s presents and presence also seems to be what my life and this Blog is about. I am, and perhaps she is, discovering resistance is the root of suffering and unhappiness. Not liking what is occurring and wanting it to be different can be an invitation for the onslaught of insufferable relatives. To be at non-resistance and complete Peace with the onslaught of cervical cancer may be more than a human can do. It may be interesting how that will play out.
Mollie flew into SMF on Saturday and we took her to the Auburn emergency where they inserted a catheter, gave her a CAT scan and sent her via ambulance to UC Davis hospital in Sacramento. She returned to here after I picked her up Monday afternoon. The prognosis is the cancer is progressing much faster than anyone anticipated. There appears a cancerous lesion on a kidney and possible metastasized material adhering to the pelvic bone and liver. No doctor would guess how much time she has left to live but they assured her any intervention would have less than a 5% chance at any retardation of the growth. It was a confirmation of the ‘death sentence.’ Returning home and getting her settled in I recognized feeling angry and the tendency was to direct it toward her. I also know whenever I felt angry before it was always a mask for some deeper emotion, mostly pain (heartbreak) and fear. Same today. But as I watch her move about I notice the physical pain often causes her to wince. Interesting dynamic. The pain I experience is internal, emotional. My body is healthy and what physical pains I experience are minimal. Her pain is physical and her emotional body has always been relatively pain free. A polarity is dancing about in the household. But then she has always been very stable emotionally throughout our relationship. I have had a more volatile or reactive emotional life than Mollie. In these two days since returning here I have had to be careful and attentive to what I say and how I speak it. I have learned when I am feeling these old familiar feelings to avoid many triggering situations if possible and if they cannot be avoided be very careful of my words and actions. These old familiar feelings have and still can keep me locked into a mindset or persona where I become more judgmental, controlling and tense. And I close off some to the rest of the world and relationships. I want to pull back into isolation.
Tuesday night I had a dream where I was hiking with a group of people and we made camp late in the evening. We were all tired from the long walk. I had my dog Suzie, who was part of my life in my middle teens and early twenties and I loved her dearly. I gave her a dish of food and set it down on the ground for her to eat. Although I set it on flat ground it was necessary for her to go down a hill to reach the food. She was an old dog and was struggling to reach the food as she slipped on the slope and her legs tended to splay as she did not have the strength to support her movements. I had a feeling as I watched her of the heartbreak of her old age and inevitable and perhaps soon to be death. The feeling awakened me from sleep it was so strong. And I knew this dream was a portent and a mirror of today and the process I was going through with Mollie. I also say how often I had avoided or minimized this feeling in me and how a persona had been created, by me, to keep this feeling as far from conscious awareness as possible. The persona of an intelligent or knowledgeable me who understands and accepts the reality of aging and death was at least partially a narcotic to keep this pain at bay. There also is an outrage at God for taking something I loved from me. I recognized that from birth I had been given a facile and healthy intellect and had used it in life as a shield and avoidance against the onslaught of the inevitable and the unfairness of that inevitability.
When Mollie announced the return of her cancer and I began to realize she may spend the rest of her days with me caring for her I began to pray to be given the strength or whatever it took to do this. Most of all I pray for a deepening of love in my heart to set aside as much as the false self and possible and live in service to that love or God’s will. I pray that my avoidance of the uncomfortable and the resistance to love be exposed fully. I pray the heart will crack open even more and that whatever personal ideas or idealizations be removed to this deepening. Whatever’s in the way, let me see and embrace it. Let me find the love that lies underneath the surface of it. Looks like my prayer is starting to be answered.
As stoic and able to tolerate pain as Mollie has been in the past, her pain causes her to wince and gasp frequently. She frequently must grab hold of something and stop her movement while walking from one place to another. This is not for balance. It seems to me to be an attempt at relief from some onrush of pain. Yesterday we had a talk about the strong probability she may never be able to leave here. Although her best intention or goal she would like is to get her own place and live independently for as long as possible. To me that seems unrealistic so yesterday we dialogued that. I want to keep the air clean between us so I had to tell her from my perspective in the moment I could not see her having enough strength to do that. She agreed. And the other potential she has is to move into the Mt. Shasta place but I have doubts she could handle even the drive there let alone such a change of residency involved with two other people. She is not sure she would be able to take the chaos of the move north. And today she wanted to make it to Trader Joes and could not. So at this time I think she will not be able to drive herself anywhere if it means she has also to walk around. Just making herself a cup of tea is about all she can handle. There are only about 10 steps from her chair in the den to the stovetop. Her bedroom and bathroom are less than 20. Both journeys can be almost overwhelming for her at times.
I have been delegated to be a sometime barrier between Mollie and the outside world. It’s a role I had not anticipated. Last evening two of Mollie’s friends telephoned for her. One of them said she would come over and give her some energy work. Both calls suggested strongly she come to an event later in the evening where a famous healer was giving a special talk and demo. Mollie spoke to neither of them. Neither was requested by Mollie and we had an opportunity to see that unasked-for advice can be difficult for the advised one disrespectful to their boundaries while perhaps more significantly, detrimental to the advice giver. The whole scenario is fraught with ‘stuck’ energy. Reminds me of Confucius, “Do gooders are the thieves of Virtue.” Or perhaps more recently “The road to hell is paved with good intentions.” Giving advice when unrequested can often do more damage than we suspect.
I have no idea how this process with Mollie will unfold. Nor do I know what will be required of me. I do sense for the next few months I will need to remain at home unless she chooses to go to Mt. Shasta or somewhere else. I may not be able to take a multi-day or weeks trip. Looks like B.C. is out and I wonder if I shall even be able to scoot to Ashland for a few days to take in some theatre. I am scheduled to go to Tahoe on April 28 thru May 3 for a silent retreat with Adyashanti. I am going to do my best to make it. Perhaps I can stock up the house with groceries sufficient to be gone for those 5 days. Gabriel has consented to check in and be available as much as possible for him. I shall also request the same from Aubrey and her husband Pete.
There is something beautiful in this not knowing and uncertainty. It is my willingness. I know it may be challenging or overwhelming. Yet something inside is saying “OK, bring it on!” There remain doubts as to whether or not I can do this. I am sensing I will need more emotional support than at any other time in my life. In the past Mollie has been one I turned to for needed support. Perhaps the only one. I suspect without her my main supports will be Tim and Lorraine. Asking for emotional support is something I have done little of in my life. I sense this is all part of the “Cracking open.” And this major support team will be by telephone.
Last evening, I asked Mollie to describe her pain as she sat on a stool rocking back and forth wincing. “I rock like this because it keeps the pain directed in a local area rather than spreading. It’s like all the female organs are being attacked by knives, swords, those swinging mace balls on a chain and every other medieval torture instrument you could imagine.” I could only look at her feeling a stunned silence inside myself. I could find no words to say. Her description was vivid enough for me to imagine what that must be like. As we continued to talk she described some of the tortures the accused “Witches” endured during the Inquisition. She had read a novel sometime back which elucidated these tortures. “The idea was the Inquisitors did not want the woman to die quickly. They would cut out the vaginal cup and insert all types of nasty things there and into the rectum. They would split open the abdomen and sometimes remove ‘parts’ of the female reproductive organs. All the while the poor woman died a slow and painful death.” I remarked that by comparison burning at the stake could be a merciful sentence. I could only imagine the pains inside Mollie as she is suffering today. Her remarks were certainly graphic enough. Writing this I feel ashamed, not only as a male, but also as a human being able to do such horrible things to fellow beings.
As we have spoken of her dying process and impending death several times during the last weeks there is a theme which keeps emerging from her. “I feel very much like this is happening and yet it’s not happening to me. Even the pain, although severe, I still know it’s not happening to me. Yes, it’s happening in this body and is very real, but it’s not happening to me.” As she has spoken these words the Truth of them is palpable and I can see in her eyes what she means. There is the experiencing of physical pain but the experiencer is not real. A paradox? Not really. In Papaji’s words “Nothing ever happened, except the Truth” but the unreal pain is very real. Life may be some type of dream state but the human experience is potent in it. Very real and unreal at the same time. It’s difficult to put this into words but it is easy to feel it in Mollie’s presence. It’s like a morsel of food on a fork; not to be described in words but put into the mouth and savored.
She is using an infra-red lamp on her abdomen 20 minutes twice a day and she thinks some relief is coming from it. But I notice she still is not attempting to leave the house. Today for the first time she took an afternoon nap. She did sit outside on the porch for a while though. It was warm and sunny.
I thought it would be a good day to go to Trader Joes as Mollie wanted to pick up some specialty food items and it was looking more and more like she would not be able to do it herself. Once inside the store her pain erupted although she was leaning on a grocery cart. Driving home she asked me to pull over to a gas station where there was a restroom. This is very unusual for her as on long road trips in the past she had astonishing bladder capacity. But today she said she felt the pain in her kidney lesion for the first time. As soon as we reached home she poured herself a glass of cranberry juice and got under her infra-red lamp. (Without finishing the juice.) Last evening she went to bed around 8pm saying she is more comfortable with the pain while reclined.
I understand she would like to move to Mt. Shasta and be within view of the mountain and this excursion reinforced doubts she would be able to do it in my mind. Leaving Trader Joes she remarked, “I could not have done this by myself.”
Last evening, she asked me to help her with some of my hypnotic and breathing techniques when the pain erupts. When the pain flares her muscles shake and contract. These contractions are intense and breathing becomes shallow, rapid and irregular. What she does now when the contractions begin is not dissimilar to Lamaze. This is not the person who has practiced and taught yoga for 30 years. So she asked I do a hypnotic intervention when she is in this attack and see if we can stabilize the breathing, minimize the contraction and perhaps lessen the resistance.
I find myself becoming more and more aware and sensitive to her shifting conditions. There is also an increasing willingness simply to be present and available for her. Presently I feel no resistance to the situation and as I give her my time and effort it is done freely. The freedom of it is a deeper freedom than I have experienced before, even in times when I have been in service to someone else. There are just no thoughts or misgivings about it. The last days I have felt like a pawn of love. I have no discord to being a pawn instead of a knight or something else; I’m honored to be moved around the chessboard of life by love. That’s how it is today…what will it be like tomorrow? Or what will it be like if the situation becomes more severe? I pray often to be given the courage, wisdom and resources to be present at all times with the sanctity of these movements. I pray the veils I have placed before me be lifted so I can see and act in harmony with what arises or what is needed. As I pray these words Grace reveals and gives what is needed.
And today we had a discussion about the fact her granddaughters are still not informed that Mollie’s condition is terminal. They are very close to her. They know she is ‘ill’ but not the extent of it. Perhaps they think she will recover or get well. If they are not told of it soon they may be angry when they learn of it or Mollie dies. Worse than the anger would be the sense of betrayal they may feel later. And still worse, that betrayal sense could plug right in to the pandemic disease of Western Culture; unworthiness or whatever it may be called by many other names. Mollie is of course willing to be direct and completely honest with the girls but their mother is at present preventing this communication. Mollie is and has been working to correct this situation, but so far there seems to have been no movement. The attempts at amelioration shall continue.
As for me I know I must stay out of the situation…. I have not been invited in. Inside me is an energy or desire to push for a resolution so the girls can be told. Once they know Mollie can handle whatever responses they may have with love, compassion and exquisite tenderness. The energy will be free. Right now, it’s stuck.
A peace and stillness resides inside today even through some self talk and old mental habits. They are occurring but it is almost like they are occurring inside someone else. It may be more like I am watching them. The experience of attaching to them is absent as is the identity of the experiencer of them.
This morning Mollie showered. She said that process took a good deal of her available energy. I noticed she spent a good deal of time resting afterward. Although she did spend a couple of hours on the front porch in the open air today. She was able to make herself some lunch and enjoy it outside. She did eat all of her food and I did not notice the burping or light belching which has become frequent after eating. The report she gives of her Infra-red lamp time is encouraging. It seems to alleviate some of the pain and return some energy to her.
She and I have had a full range of interchanges throughout our knowing each other. There have been times when we were quite free and open with each other about our discovered foibles and identifications with the false self. We have shared many pieces of literature and had exciting and enlightening conversations about them. The same could be said of music, theatre and movies. These sharings and conversations have always been an arena where we could connect. It was a source of connective energy to each other and life. Then there have been many times where humor, playful bantering and teasing have also been a significant connective energy. All of the above are still present. Even though her pain sometimes makes it difficult for her to interact there have been many moments of laughter and interesting conversations the last few days. I cherish these moments.
Our differing Spiritual journeys have probably been the deepest and most significant connection between us. It is what brought us together and kept us together through the vicissitudes of life and changing dynamics of relationship and friendship. It has always been a strong bond between us and even now in this medical process it strengthens and deepens. Our conversations of Spirit are frequent and always wrapped in the tender and inspiring vernacular of love. I personally have been aware of its profound mystery blooming his past week. I can only bow in reverence.
A relatively quiet day with a trip with Mollie to Target to purchase her a comfortable chaise recliner for the front porch where she could lie flat outside. It is a 5-minute drive there and we spent perhaps 15 minutes in the store with her supporting herself on a grocery cart. It was fatiguing for her and exacerbated her pain.
Yesterday was devoted to an appointment in Sacramento with Mollie’s gynecologist/oncologist. There was some talk of doing another CAT scan on the upper body to see for certain if the cancer had spread to the lungs. If it had not there may be a possibility of chemo or radiation which may or may not have some effect. All would have to be determined later. Mollie declined. After an exam the doctor, Lloyd C. Smith told her the tumor was “Quite large.” Mollie related to him she just wanted to spend the remainder of her life as comfortable as possible. She asked him for an estimate as to how much time she may have left. He would not offer any guess. He spoke of Hospice and I told him of my involvement with it here in Auburn. I had a few questions for him concerning installing catheters which may be necessary soon. Then they said goodbye to each other. It was a final goodbye and a very tender and powerful moment. He hugged her for a long time. Even standing 10 feet away I was almost overpowered by the heart energy and sincerity. I actually fell in love with him at that moment. Tears of love were interfering with my vision as we walked out of the office to the car.
On the drive home, I felt a softness present I had not known before. In that soft energy, a sadness and an exquisite beauty of life were present. The sadness was of the implacable terminal confirmation and the presence of joy in the palpable knowing “This is my beloved with whom I am well pleased.” Indescribable. Several minutes later I told her again how honored I would be to have the privilege of her caretaker during these last months(?) There is still a desire in her to move to Lake Shastina (Mt. Shasta area) and spend her days looking at the mountain. I support her choice whether she remains here or moves there. I would like to spend as much time with her as possible and a move north would mean I would see her much less. Inside me there is a tension as my personal agenda would be for her to stay here and at the same time I am supportive and comfortable with her option to move. Recognizing that agenda or tension I am trying to remain vigilant to not attempting to influence her. Yet I am her sounding board and we have spoken of the pros and cons of such a move. My role is primarily listening but when questions like “What do you think?” are asked, I offer opinion or feedback.
Today the pain seems to be more intense or severe, especially in the right hip and femur. She has spent more time under her lamp and more effort keeping her mind off the discomfort. According to Mollie’s intuition and Dr. Smith’s confirmation, there could be some sciatic nerve damage or pressure. This afternoon for the first time she seemed as if her nerves were “on edge.” She acknowledged this after connecting via e mail with one of her friends who apparently was offering unsolicited advice about her condition. She was angry with her friend and this anger was apparent. “I’ve got to so sit outside and try to regain my humor” she told me. To see Mollie “edgy” has not been something I observed in my years knowing her. “It’s an Uzi day where I’d just like to mow things down” she said. Anger is not something I had seen often in her and even when she was angry with me she was able to express it to me directly and appropriately. Then it quickly passed. Her “edgy” anger and upset did not pass quickly today. It seemed to me to piggyback on the physical irritation. The more I live the more appreciation and acceptance I have for the Gethsemanes and Bethlehems of myself and others. This human experience is both horrific and sublime at the same time. The paradox is illusory. It’s both!
Sometimes I want to help and do not know what to do. I’m reminded of a passage in A River Runs Through It. In paraphrase, it says something like: “Often we want to help but do not know what to give or what is wanted. More often than not, what we have to give is not wanted. So, it is those who we live with and love who most elude us. But we can still love them. We can love them completely.” (Apologies to Norman Maclean and perhaps Robert Redford for the possibly inaccurate plagiarism.) It does sufficiently express the wanting to help and the hollow impotence I feel today.
I had our monthly lunch today with two buddies, Gaylen and Dennis. The three of us have been meeting like this for a year or so. There is a spiritual bonding that has strengthened over this time. This meeting is another loss in my life as Dennis is moving to North Carolina next month. This was our farewell lunch together. I feel grief about my friend moving and the end of our three-way time together. I had grown fond of the meetings.
I see I cannot, nor do I want, to separate loss from gain. My time with them was precious and although I shall and do miss it, there is now only the memory of our lunches. That memory emerges through the grace of gratitude for them. It’s how Love moved through this particular triad for this time. Any indulgence of “loss” would amount to an attempt to control the flow of Love’s river. Today Love is moving through the grace of remembrance and this memory is Love’s Freedom. And Love is marrying this experience of Mollie and the termination of these meetings on the altar of my life. I am the ‘best man’ at the wedding and serve in adoration of love instead of the indulgence of loss.
Last evening Mollie and I watched Adyashanti’s webcast together. It was so sweet to sit with her in his presence even if he was on a monitor. It was like only the three of us were in my living room. Adya’s themes always seem to point to the balance of our Spiritual and Human natures. He suggests some people attempt to live more in the Spirit while ignoring the vicissitudes and challenges of ordinary life. There is a blend or melding of the sometimes bliss or happiness with other times of sorrow or horror which life can deliver. Adya’s program was a perfect expression of what is occurring now in Mollie’s life. Despite her advanced spiritual stage, life’s horror and physical pain is consummating a marriage of the Divine and the Human. At the same time, there’s no logjam in the river of Love. It’s being directed by a mysterious gravity. Even with the pain that mystery is accepted and adored.
Her daughter called today and the granddaughters have been told of their Grandmother’s condition. Later one of the girls phoned her grandmother. She was not really able to speak of Mollie’s death directly. “Her voice was shaky and she said I only called to say Hi Ooma” was the report from Mollie.
A few days ago, Mollie and I began to speak of the eventual catheter which looks like it will need to be used. Also. a colostomy is highly probable. Finally, these devices will give way to diapers as the entire excretion systems deteriorate and dissolve. As she spoke of these she expressed her aversion to not only their inconvenience, but to the shame of resorting to their eventuality. “With the catheter, there may be a constant odor of urine. I remember sitting on an airplane next to a person whose clothing was partly saturated with urine. Even though the garments had been washed one cannot get rid of the odor. It was uncomfortable sitting next to them. I would be embarrassed to have that odor about me.” She remarked another time how she had purchased leather goods from Native Alaskans which had been cured with urine. “They smelled like urine forever.”
Then there is the issue with underwear. “The one’s I’m wearing now feel like fire wire cutting into the area where the incisions are, on the outside of the hip. I need to find some undergarments which fit differently, which have no seams. I have to adapt to this challenge. I don’t know how to solve or even if it can be solved. I want to go to a store and see what may be available.”
These dilemmas are topics which Mollie, in her stoic English upbringing, has not been comfortable to bring up in conversation. Even in our past intimacies as lovers I knew of her hesitancy to speak freely with me of some feminine matters. Now with the cancer she is learning to overcome her reluctance and even speak more openly of it with me and others. The old conditioned patterns must be confronted and dissolved in order to meet the realities of decline. It’s becoming clearer this process is not only about letting go of life, but also letting go of conditioning, patterns and identities. Dying, at least in this case, appears to be maturing into a wholeness of nothing.
And somehow Grace is supplying whatever is needed. We are living in a cascade of Grace which constantly delivers succor, intelligence and the sanctity of a perpetual baptism into love. All it requires of us is to remain silent and open.
And somehow, I seem to have misplaced my desire to know more of her subjective experience as I drown in this Cascade. There is no distance between everything.
I notice Mollie’s appetite has been fading and she is becoming more selective in what she eats. Today her pain is more acute and for the first time I noticed she increased her pain medication.
Tom and Patricia stopped by to visit yesterday on their way back to Alaska. I have known them for about 20 years although our visits have been infrequent. I am very close to them, especially Tom. Mollie has known them at least ten years longer and is closer to them from living in Anchorage. Tom has been ill and the origin and diagnosis is unknown. He will not consult any allopathic doctor and is attempting to heal “naturally.” It doesn’t seem to be working very well. Usually a picture of radiant health and good energy it was shocking to see him with serious ailments. Spending the afternoon with him and Mollie felt a little like visiting in hospice. Tom has been an advocate of health through diet and supplements for his adult life and owned “The Enzyme Express” health store in Anchorage for years. His life’s work has been to educate people about nutrition and healthy life styles. He has been dedicated to this mission. Mollie too has been an advocate of health and up until recently has exhibited incredible vitality with sustainable endurance. What an irony, two of the most vibrant people I have known are now dealing with very serious illness. One is probably terminal and the other is dubious.
A few days ago, Mollie sent out an e mail to several of her friends at locations around the globe. In her surrender to inevitable with a whole heart I see this letter as an affirmation, filled with a tender expression of gratitude and love, of this Cascade of Grace and its immaculate Light.
Greetings My Dear Friends,
Yesterday I had an appointment with the oncology surgeon our final meeting as it turned out. He concluded our visit with a very prolonged and sincere hug during which he was able to convey his deep sorrow at not being able to help me more, compassion for what is yet to come and pure, tender unconditional love. It was so palpable, Michael felt it too and we left the office blurry with those tears which arise from love and great appreciation for receiving a benediction of love in such a clinical setting.
This incident crystallizes the inner depth emerging from this unexpected journey called terminal cancer. The pain is immense at the same time as it seems to have stripped away the veils that cloak the underlying truth of love, grace and beauty so cunningly concealed beneath a perception of ugliness.
I have shared with a few friends how for many years the inner prayer of my heart was “I want to know what love is” usually chanted to the song which begins with that line.
For years I understood on many levels the line from A Course in Miracles which states “Only Love Is REAL.” Now, I feel the fulfillment of that prayer and a knowing beyond the mind or even the heart that Love IS all that IS. I’ve not wanted to speak of these things as those phrases have been reduced to clichés however one of the many gifts I’ve received is to be at peace with becoming a cliché.
As to practical considerations they are not possible to predict. For the present moment, I’m staying with my friend Michael in Auburn, Ca. He has dedicated himself to staying present and taking care of me as long as that is what I want. I’m overwhelmed with love and gratitude for all he does for me. I still feel a pull to end my days looking at Mt Shasta and if I keep going long enough I do have the possibility of being with Gene and Glenna in the home they are buying in Lake Shastina. They too, have dedicated themselves to helping me in whatever way works for me. And in the great unknown there is always potential for a miracle and as my friend Maria puts it, time for the Hail Mary Pass.
All in all, the outpouring of love from my friends and family has split my heart into a million pieces. Each one of you a brilliant testament to the power of love.
In gratitude, grace and love,
And the responses!!! As she read a few of them to me the outpouring of love and appreciation for her is indescribable. I have never heard words which have expressed the opulent devotion of the human and Divine Heart better. They literally took my breath away. They said farewell with such tender sincerity while pouring forth thanks for how she had touched and changes their lives. These letters are a consecration of life lived fully in the joys and sorrows of this human adventure. Some of the responses are as alive as life itself. These too are worthy of publication but I lack the author’s permission except for a partial excerpt from the one printed below.
Oh, Miss Mollie,
Your words, your embrace with this experience, we call “life” and “death” touches me to my very soul. I find it so fascinating that when our spirit expands so much that the body cannot contain the spirit any longer, the body breaks down in order for the spirit to leave and be set free. Your spirit has always been HUGE, Mollie, contributing to this life of ours in ways we cannot even count. Remember how we were both earth mamas at the friendly fires in Peru… dancing around the embers of hot red? Yes, earth mamas, joyfully dancing the sounds of life in full bloom (to say the least)! I will never forget that. I felt so bonded with you…and knew we were soul sisters from another time and place…who knows where?
This “shell” we call a body, is like a seed that breaks open so that it can sprout and grow new roots. Some seeds, like certain pine trees, actually need to be exposed to 1400 degree temperatures to even break open. Your life has been so full that the seeds you have sprouted have grown into each of us. Parts of you live inside of us. We grow because you have lived. We grow because you have shared your life and love with us. We grow because you have made a difference in this world of ours, because your gorgeous self has mattered. You are a woman of increase, giving to others without end.
Your spirit has spread over this universe… touching all souls who have ever touched you, even for a brief moment in earth time. I adore you, Miss Mollie. I love you. I look forward to recognizing you in the world we do not see with our physical eyes. I have always felt a deep connection to you and always will. I am so glad you are being loved up by your friends and family, with the dignity, regard and honor you so deserve. I serve as another one of your guardians, holding the gates of possibilities open for all time.
Thank you for writing. Thank you for sharing your words of wisdom with all of us. Thank you for being born. Thank you for giving us the essence of who you are in the most genuine way. Thank you for healing so many souls out here. Thank you for walking the earth, growing your seeds and sprouting new thought. Thank you for teaching us courage and love. Thank you for being YOU…one unique, amazing, wonderful, heartfelt woman, named Mollie.
I love you forever and a day! Blessings,
What more could be added? Here is God’s Plenty.
I returned from the Adyashanti workshop yesterday afternoon discovering Mollie in much pain and at her “wits end.” She was almost in a panic and was relieved to see me back home. She was on the front porch resting in the warmth of the sun and I could see immediately how my absence had distressed her. Fortunately, a few people had stopped by and a few others called to check in but part of the panic or anxiety she felt was my absence. Seems like in the end I am the one who anchors her to any security or comfort with my dependability and rock solidness. I see from here on out I cannot be away for more than a few hours. So, I am so grateful to have had this time with Adya and the profundity of my experience there could be another entire Blog.
Carrie, Mollie’s daughter did show up here late Wed night and stayed until Friday morning. That visit was a good distraction and help to Mollie. Without it, I think Mollie might have made an emergency call for me to return home. Of course, I would have returned immediately, but to complete the 5 days at the retreat was essential for me. Once again, Grace showed up and delivered what was needed.
When I returned home what I wanted most of all was just to be still and quiet. I left the retreat immediately after it ended with the conclusion of the silence. Others went to a final lunch together and as I heard the chattering I felt I did not want to be part of it. I wanted to remain quiet. I got in my car and left. Besides, Mollie was the only person I wanted to speak to anyway. I drove home for over an hour in quiet but when I arrived instantly I realized the time for stillness and quiet had vanished. There were things which needed discussion and actions which needed to be taken about Mollie’s situation. I could see how much she had deteriorated in 5 days.
First of all, fecal matter was now leaking out of the colon and being expelled through what is left of the vaginal cup. The pain she was experiencing had increased dramatically and she was maximizing the allotted pain medications. (10mg Norco tabs 2 every 4 hours. She is counting the minutes until it is time to take another.) As to the fecal leakage we knew we had to see a doctor so that meant another trip to the emergency room and we decided to wait until Sunday as we thought she would be hospitalized and given a colostomy. (Not much chance of that happening until Monday.)
Through all this talk and absence, we both spoke of a deeper appreciation and love for each other. How important and precious these years with their comings and goings are to us! It was a beacon of light shining through all of the discomfort and uncertainty. Even in this time of the body spiraling down, it is presenting us with the opportunity to appreciate the virtue of death. Virtue, not as a comfort or relief from the trials of life, but a plunge deeper into life to discover divinity where we had not seen it before. There is no such thing as a separate life from a spiritual life. All of life, its entirety is our path. Anything less than all, we fragment and split off from ourselves. That split is the core of any of life’s problems anyway.
It is good to be back home again.
Yesterday we spent several hours in the emergency room at the hospital. The doctor told us not much could be done at this time. A colostomy would not be advised as the potential for infection in surgery would be too high. She had a couple of shots of pain medication which helped relieve her. As the medication was injected I could see her facial muscles relaxing and a few seconds later the body followed. We were able to begin the Hospice initiation process. A case management nurse took some information and sometime during the first of the week we should have everything in place. Once again Grace moved in mysterious dancings. Not entirely mysterious though. Aubrey is an emergency nurse and once I told the doctor and nurses I was her father, we began to be treated differently. It’s good to have a little clout here and there. I was pleased and proud of the reports I heard from the staff about how much Aubrey is appreciated for her competency and personality. It is clear to me she not only is recognized as a good nurse, she is loved by her co-workers. (I know how easy it is to love her!)
Back home I am having a difficult time dealing with the odors of Mollie’s predicament. I remember when the kids were in diapers often an especially foul one could gag me as I changed it. Mollie’s condition goes further than simple incontinence. What exudes from her body is more than only feces. There are parts (?) of her literally rotting away. Simple decomposing of the body. As a redolence, it diffuses throughout the house. The bathroom fans cannot take all of the smells away and despite her cleanliness Mollie now carries those pungencies about her clothing despite the adult Pampers etc. We have tried a few products to help with the problem and so far, the only thing which works even a little is a lavender spritz. I am trying not to resist what I cannot change, but the challenge is taxing. My prayer? “Thank you, God, I have no complaints.” My response? “Yeah, right!”
With all of the bathroom visits for her today there we a couple of “accidents” she had while attending to herself. Twice she came out with fouled clothing which I immediately put into the wash. The machine is doing extra duty now and the “sanitize cycle” has finally made its virgin cycles since I purchased it 2 or 3 years ago. I imagine parents of diapered twins depend on a similar service from their laundry room!
This evening after a day of her evacuating her bowels perhaps for the 20th time today she remarked “How can a body have so much shit in it? It keeps coming and now it has the consistency of mud.” I notice each time she emerges from her bath room her pain and discomfort is severe and she is exhausted. Her times under the lamp still offer some relief but not as much as before. At about 8:30 she decided to be off to bed with her laptop to view a Netflix. “I hope I can get through the night, this day has been one of the worst.” It’s true, I could see that plain as day. And there’s nothing I can do about it. I give everything I had today to distract her mind away from the pain. All my conversational talents, all my wit and humor had but little effect. What I have to give is impotent against the discomfort. As she was preparing for bed she came into the living room where I had begun to read. She approached me and as I looked into her eyes I could see only desperation. “I just have to say,” She said, “This pain is awful, I hate it. It’s not that I want to die or leave but it gets so severe I can’t stand it. It’s horrible.” There was anger in her words and as I listened I saw something I have never seen in her ever before. I cannot pinpoint what it was but it was like a deep existential disgust and weariness. As she went into her bedroom I set my book on my lap and began to cry my heart out. It wasn’t about her dying and me bereft of a dear friend. No, it was closer to the unfairness of all this physical pain which seems so unnecessary. I cried and cried. Why God? Why all this pain? My heart is breaking, breaking, breaking and it won’t stop breaking. And I cannot stop crying. The more I cry the more it breaks so the more I cry. “How can a body have so many tears in it and how long can a heart break before nothing is left to break?” I know the answer—eternally. At this moment, I don’t like it.
Last night was horrendous, especially for Mollie. After the above episode, she came out of her room and said she would have to spend the night on the toilet. She took a wooden stool in to set her computer on and a comforter for warmth. The moans coming from her only quickened my heartbreak. There is absolutely nothing I can do. I can do anything she requests except relieve her pain and that is what she wants and needs most. I feel like a man with a flashlight in the darkness and there are no batteries in it and the bulb doesn’t work. Mollie remarked shortly after awakening; “I had no idea it could come to this.”
After about two hours on the toilet last night she had to get up because her legs were falling asleep perched against the seat. So, she went to bed and for the next few hours trotted off the toilet every 10 minutes or so. It just keeps coming out. And with every flush she must clean herself up. Dirty towels, toilet paper and Kleenex accumulate. It’s astonishing what comes out and the amount of energy she uses in expulsion and cleaning.
Fortunately, she fell asleep about 6 am and was able to sleep until close to 9. But on awakening all of her night clothes and bedding had to be treated with a strong pre-stain and placed directly in the washing machine. The floor and tub needed a cleaning and sanitizing. I had to run off to the store to purchase more products.
I know I have lots of vitality and ability to take care of any chores which may need doing. There are reserve energies for it. But this helplessness I feel is more difficult. I have no way of knowing how deep it will go or how overwhelming it may become. Believe it or not, I am at peace and can find no resistance to it. Here I write about whether I will have enough left in me to deal with this. Mollie reached bottom a few days ago and still she deals with it as best she can. Yesterday afternoon as we were sitting on the porch chatting Orpha from across the street came and sat. Mollie immediately reached inside herself and became the gracious person which she is. I could see it took much effort for her. Orpha started talking of her problems and concerns, especially for her husband. I watched the energy drain from Mollie yet she continued to listen will all her heart to Orpha. I had to request an end to the conversation after 5 minutes as it taxed Mollie. That’s what I mean when I write how she continues to deal with her situation despite her exhaustion and pain.
We spent some time this afternoon creating e mail list of people for me to notify when she dies. I will telephone most of our friends together so they will get personal contact from me. There are a few score of folks around the globe who I have not met but are close to her. They will get e letters from me. She thought her sisters and other relatives should be informed through her daughters. That sounded appropriate to me. Although it was difficult for her to do this today because of the physical pain, she had a few good moments of distraction and we were able to have a couple of belly laughs together. The pain medicine seems to be a bit more effective today. And her diarrhea has turned to flatulence, mostly! (Good news for the washing machine.) Hospice called today and will be here in 2 days. A doctor has been assigned and we will meet with a nurse and social worker then.
This Blog has become more than a chronicle of the interior and external process of me and Mollie. It has become a surrogate spiritual therapist for me. Writing it I discover feelings and thoughts which I have either avoided or have emerged while typing. Something about sitting down and writing frees me. Words of thoughts and feelings I do not wish to disturb Mollie with can be put on paper instead of spoken. Although Mollie and I have been very free speaking with each other through the years, I am reluctant to speak of something immediate which may cause her distress. I’m not caretaking her feelings and I’m not holding back. It feels appropriate to write for now. She does read this Blog, but then there is a distance between what I perceived and what she may be experiencing when she reads later. I know this time lag often can be a source of miscommunications but writing in the Blog first seems healthy and considerate while keeping things out in the open and sunlight of life. At least for now it is working for me.
We both had a good sleep last night after a horrendous previous day and night. I was away for a couple of hours this morning and when I returned Mollie was having severe episodes of pain. They lasted about 5 minutes, would subside and a few hours later erupt again. She moaned loudly and would rock back and forth with her torso during the upheavals. “Where does the pain seem to be located?” “It’s mostly in the rectum” she answered. About noon she decided to make herself some scrambled eggs and toast. I left her alone to do it but after standing a few minutes the pain became so excruciating she had to sit down on kitchen stool with a bed pillow under her. I finished cooking the eggs and toast for her and she was able to eat most of it. She had mentioned she wanted to go to a store nearby to purchase some special towels which would make it easier to keep herself clean. Feeling a bit better later in the afternoon we drove there. She found the towels quickly and we lined up at the register to pay. Her pain was returning from standing and walking although we had been in the store only about 5 minutes. As we stood in line she whispered; “Can you smell me? Do I smell like I think I smell?” “Yes” I said. “This is so embarrassing” was her reply. By the time we returned to the car where she could sit the pain had erupted again. “This is so hard and I’m afraid to get too far away from a toilet.”
Later at home I went for a walk. When I returned she was sitting on the porch reading in the fresh air. We had a delightful and enlivening conversation. It was so wonderful to see her mind was involved fully in the talking instead of on her pain. I’m happy I can at least be part of a conversation that is able to provide a distraction. It is one thing I can do which can help her get what she most wants and needs—a movement away from the intensity of pain. When it was time for her to take her medication she asked; “Would you go inside and get my pills off the table? It will save me getting up and moving about.” “Of course,” I replied, “That’s one thing I can do for you which I know will help you. So often I feel so helpless.” Doing those types to things for her helps me to feel a bit less helpless.
Leo … July 23 – August 22
You might have trouble with your plumbing today, Leo, particularly if you have a big kitchen. This is too complex a problem to handle yourself. Pay the money to have a professional take care of the problem. It will save you work and frustration. In the meantime, have a pizza delivered while you’re waiting to get your kitchen back!
Mollie’s horoscope for the day was too comical not to post. There certainly are plumbing problems going on in her but I know of no local plumber who might be interested in this repair. Pizza!!! For breakfast? This astrologer must think her a teenager. However, humor is a big part of her day and often delivers more relief than medications. We are grateful for the irony.
As I was preparing to go out for a walk this morning I asked Mollie if there was anything I could do or get her before I left. Her reply; “Would you bring my laptop out of the bedroom for me, it’s hard for me to carry it. I’m getting weaker.” A pang of shock went through me as I see another stage of the disease showing up faster than I anticipated or wanted. That shock wave turned to sadness instantly. Returning from the walk later grief unfolded inside with a tear of recognition that already I’m beginning to miss Mollie. As I write this I’m having difficulty seeing the screen clearly through the water in my eyes. Everything is a little out of focus.
Gangaji was in Grass Valley last night and I had left here about 2:30 in the afternoon to help set up the event. By the time all of the attendees left it was 9pm and the cleanup and pack up began. We did not complete until 11pm. All this time Mollie was alone and although my cell phone was one except for the actual meeting I was aware of hoping she was OK. When I returned home later she was still awake reading in bed. She not only had been OK she had a peaceful evening. I sensed she enjoyed those hours alone. I had spent time and energy worrying. It’s an old pattern for me.
This morning she was in good spirits for about an hour until the pain kicked in, this time with a vengeance. The spasms lasted longer than usual and the medication did not seem very effective. We had a discussion about a process she had done with her groups. She would have them look into a mirror and rather than seeing themselves in the mirror look as the reflected image is ‘you’ looking back at the physical ‘you.’ It’s an interesting shift in perspective. Going through this a day with Mollie is akin to this exercise, ‘I’ am watching ‘I’ move about in life. From Mollie’s perspective, she tells me the ‘mollie’ experiencing pain and dying is not Mollie. (That’s about as well as I can say it. I wrote of it before.) I know the Truth of this for myself and I also know Mollie well enough to recognize it through her even without any words. To put it into words I will say it is more obvious than the air we breathe and even closer than that. Her description: “I’m watching myself deteriorating, watching the body rot away moving toward death and am quite amused and curious about it.”
This afternoon Hospice showed up to enroll Mollie. A social worker and nurse were here to take some information and leave medications. Some of those drugs left, were to be administered when death becomes imminent and the fluids may clog the lungs and bronchial passageways. Morphine doses were also part of the package for the times the regular meds would not diminish the pain spasms. The hospice process is already helping me with some of my chores as now prescriptions will be sent to the house by hospice saving me a trip to the pharmacy. One less item for me to deal with.
Being with those two representatives for about an hour exhausted her. Once again. she had to reach deep and let her natural gracious self be hospitable. She does it so elegantly and seemingly easily we are amazed later by how much vitality it robbed from her. I am so familiar with her natural elegance and charm I fail to recognize how deep she is reaching inside to display it. What once was so easy and free flowing for her has now become effortful.
I sent this Blog out to my sister and some friends a few days ago. Today e mails arrived from them with concerns about my ability to endure. They seem to imply I’m not taking enough care of myself especially since the difficult parts of this journey have yet to arrive. In view of those words I shall write something here of my awareness about by ability, knowledge and endurance. In a nutshell, I have none of those qualities. I do not know what my abilities are and have very little knowledge of what may be required of me soon. For right now I still have the opportunity to leave Mollie for periods of time and participate in some of my “normal” activities. So, I have opportunities to recharge. I suspect that may change soon. The change will probably diminish my capacity for endurance. I may approach burn out. I expect that. (Plus, I do not know what my endurance level may be. I’ve never done anything like this before.) I am not so foolish to overlook I too have a very vulnerable built in human characteristic called a Breaking Point. I too will break at my physical limits. I have mental and emotional ones as well. And I do not know what those may be. I remain vigilant to them. I’m also not so foolish as to ignore all the help and support I can get, seen and unseen. There are many systems available to me besides hospice. I recognize if I am unable to handle it there is full time nursing assistance available for hire. There are care facilities nearby where skilled and experienced people work with technologies I do not have in my home. Although I want Mollie to remain here I will use those resources if and when I approach the “end of my rope.” While I’m not reluctant nor afraid to care for Mollie here I’m also not reluctant or afraid to face by inability to do so. Nor am I afraid to face any self-criticism or self-accusation of failure. That being said…I can get on with this Blog.
This evening before going to bed Mollie said; “I don’t think I can last too long. Today has been one of the worst for pain and if there are many more of these days I won’t make it long.” Another pang of compassion shot through me. “This day has taken a lot out of me.” She grabbed her computer to be off to Netflix bedtime. I could only say; “It’s a real dilemma for me Mollie, I want it to be quick or soon so you don’t have to suffer and I want you to stay longer so I don’t have to start missing you too soon.” She went to her bedroom returning a minute later as I was staring out the window at the sunset she said; “I know.” She put her arms around me and I put an arm around her; “It’s kind of like having to put your favorite horse down. Or dog. But maybe it’s harder to do that because even if you don’t have to shoot them you at least have to make the decision.” We stood there in an embrace watching a long cloud in the sunset change colors from peach vermillion to salmon and fade to iron grey then blend into the darkening western sky.
I went to the gym this am before heading to Roseville and chiropractor. The last time I visited the gym was before the Adya retreat. I did not realize how much I have missed that form of exercise. The vigorous movements and resistances seemed to clear my cellular structure of the events of the past week. Although I have done much walking and some yoga and stretching, I need to spend time with these other forms as well. It’s probably more necessary while engaged here with Mollie.
I notice Mollie’s diet changing almost daily. There is no visible pattern evident to me. One constant is the volume of intake is far less than I remember at any time. Often, she will skip one and sometimes two meals a day. In the past, even when ill, she ate much more than she is eating now. Always there were three, even if one was small. It also appears to me she is losing weight. Part of that loss may be attributed to the amount of excretions which seem almost constant. Every couple of hours there is a bathroom visit and she complains; “It just keeps coming and coming. I don’t know from where. I would have thought by now there would be nothing left.” Each time she urinates or defecates there is much pain. She will sit on a chair or the lounge outside holding her mid-section and rock back and forth for several minutes. Even behind closed door while on the toilet I can hear her moans and cries of pain two large rooms distant. The odors continue as before.
For the first time, I feel tired today. Not tired from working or lack of sleep, but a deeper almost existential tired, a kind of “Weltschmerz”, world weariness. The body seems to be depleted of some of its energy and vigor which dwindles as it tumbles into the movements of life.
On the brighter side of the day Kathleen was here for several hours today. She gave Mollie a Bowen treatment and the visit invigorated Mollie to a degree I have not seen for a while. “Kathleen is the only person who has come to see me where I actually feel energized instead of depleted.” Although I wanted to spend more time with the two of them I left them mostly alone as I saw how it was refreshing Mollie.
Cooking dinner last evening I prepared 3 courses for Mollie. One was broccoli. About half way through cooking she suddenly decided my preparations were incorrect or not to her liking. We had a bit of a conflict with this as she took over the dish. Although the interchange was relatively minor and passed quickly to me it indicated another step in this process of deterioration and my challenge of ignoring or letting go of my plans or manner of doing things like cooking. I did not do a very good job of that with the broccoli episode. I resisted what I saw as her “butting in and taking over.” Mollie and I have a history of handling episodes like this very quickly without blame or judgment. Last night was no exception. The entire interchange lasted only a minute and affection and respect were never absent, although the words spoken had “do it my way” energy by both of us.
I can see one of the challenges for me is to drop the “I want to do it my way” agenda more quickly. All the literature and training I have about the dying process tells me the likelihood of these episodes will increase. Those times when my energy or vitality level is low or some old baggage is hot in me are the times when I would be most likely to push back at what I perceived as a criticism. With the event last evening I was aware I stepped out of humility. The interchange was a trigger for me. Although I wish to minimize any reactivity I show to Mollie I recognize the gift of such moments for me. I do pray for the strength and compassion not to lash out when they arrive but I also am grateful for the mirror they offer to see my True face.
Later we were having a discussion about Krishnamurti’s talk when he dissolved the Order of the Eastern Star. The theme of that talk was any organization for Spiritual expansion inhibits or stops awakening by imposing or offering systems, structures or methods of awakening. These offerings take away freedom and the self sovereignty necessary to embrace the subjective landscape of Truth. We talked of this for several minutes enjoying each other and the animated conversation.
Ironically, or in more of a slapstick humorous satire, this morning’s first conversation after the “Good mornings” was Mollie describing some intestinal gurgling flatulence which instead of discharging through the rectum like a proper fart, chose the less common exit of the vagina. There it is, our last conversations covered the geography of philosophical venturing and the next one described the digestive anomalies of the human organism. “I was lying in bed this morning when these little bubbling farts were escaping through my vagina. It was like they were singing to me. It was most amusing and unusual.” Lord, what indiscreet and delightful things these bags of skin are!
Today has been a little better for Mollie. Although the pain is still severe, especially in the rectum, the medication seems to be doing a better job. There have been times the past three days when she has staggered around like a gin sloshed matron. Many times. the pain was not diminished much despite the effect of the drugs. And she does not like or want the inebriated feeling. She has complained while trying to read she cannot focus her eyes clearly through the opaque screens. Sometimes she will put the book down, close her eyes and not sleep. At other times. she will fall into the deep sleep of intoxication.
She did get to converse with her two daughters and granddaughters. They called to wish her a happy Mother’s Day. In the mail were two letters, one from each of her daughters. She shared a few sentences of them with me and I had the privilege to hear of the outpouring of recognition, gratitude and love these women had for their mother.
Connecting with her family and some friends via e mail yesterday seemed to give Mollie a slight boost of energy toward evening. It was exciting for me to see glimpses of the woman I have known. There has been too much of the woman moaning in pain and unable to get comfortable lately. Yesterday was probably the warmest yet this year and the porch may have been too hot for her.
But this morning a serious round of pain started after she tried to have a bowel movement. She has been constipated for a few days and when she attempted to poop this morning it was excruciating. (I’m running out of adjectives or adverbs to describe her episodes of pain.) Her words are more graphic. “My anus and rectum is now only an open sore. Anything coming through must pass through this what feels like a wound, a wound that cannot heal. So the body fights the pain by prohibiting any movement through the soreness. Even when I try to activate the muscular peristaltic process it aggravates the wound and creates pain.” (I’m also running out of nouns to describe this wound. Perhaps the medical lexicon contains proper definition but Mollie’s metaphor speaks of it with vivid imagery. “It’s like some has shoved a serrated knife up there and twisted it.”)
And when these things occur I can do nothing except be with her touching her with my hands and heart. More and more I become aware of my presence or touch does less and less to alleviate the suffering.
The nurse called this afternoon and spoke with Mollie. The upshot of the conversation was her medication was increased with a long-lasting dose of the same medication, Percocet. She began the new dosage at 7pm. We shall see what the results are in the next 24 hours.
The hospice nurse came this afternoon and changed Mollie’s medication process. She has now started morphine. Her pain level for the past two days has been 9-10. That’s as high as the calibrations go. The first dose of morphine reduced that level to about 6 or 7 within 30 minutes. From my vantage, I could see her musculature relaxed greatly and she was able to sit in a recliner without squirming or rocking. I have not seen her able to do that in several days.
The nurse was also able to describe to me what is happening in the abdominal cavity. There is rampant deterioration. I had not been aware of its extent. It is not limited to the lower bowel, anus and vagina as I thought. It extends upward. How far cannot be determined. Up until now I had thought this open and oozing sore was relatively limited to a few layers of surface tissue. I have a whole new picture and experience of what it must like for her. My imaginings of the severity of her pain has amplified. So, has my empathy and sympathy. I have been deficient in my understanding and now have a clearer picture of the reality she lives with. This picture sends chills up my spine and raises the hackles on the back of my neck. I shudder.
Lately we have had a few conversations, or rather she spoke and I listened, to the consistency about the fecal discharges. “It is and has been for a few weeks the consistency of mud.” “Oh well” I reply, “Out of the mud grows the lotus.” That metaphor is not meant to be humorous or facetious. Out of the mud of this entire experience between us, out of the feces, odor and composting of the body; the lotus of love grows. The e mails we receive affirm it extends far beyond these two forms of Mollie and Michael.
One of my chores or offerings has been to provide distractions for Mollie. If her mind’s attention moves from her pain to some other subject the body is more comfortable. Earlier I searched a used book store for reading material. Her pain and medication levels are such she is looking for “mindless entertainment.” Not an easy find for me as she is looking for something lightweight and with a ‘yin’ or feminine sensibility and tone. (Perhaps a difficult task for most males?) But I was able to find 3 ‘page-turners’ for her which capture her attention. Maybe I should give myself a gold star?
Awakening this morning she took a dose of morphine half an hour before arising hoping it would diminish her morning pain, it seemed to help a little, but only minimally. She has been having severe pains in the morning after arising as she begins to move around. “I feel like gravity is rearranging my innards after reclining in bed most of the night.” Although she is up several times during the night for bathroom episodes, it is only few steps from her bedroom. The march from her room to the living area or kitchen is much more. While standing at the kitchen sink mixing her morning concoctions of Bio-Lumina and juice the pain becomes severe and she often needs to sit immediately. Often the walk from her bedroom alone elicits this onslaught. This morning’s dosage of morphine had little effect on the gravitational reshuffling in her lower abdomen. I am disappointed at the results. And later after showering she called from the bathroom for another round of the drug as the running water “Aggravated the open wound between the anus and vaginal cup. I’ve got to remember to use the morphine before showering.”
And through all of this Mollie still recognizes, affirms and lives in her Essence. I asked her yesterday when she was sedated by the first morphine doses if she was still aware of her Being of Silence. “Oh yes.” What a silly question by me. Her awareness lifts all about her to awareness. Another time in the throes of pain I asked the same question. I got a similar answer.
I have enrolled in a class with Adyashanti via computer which is titled “Resurrecting Jesus.” We watched together the past two evenings and it has given us much conversational fodder. It has not only provided a distraction but also given us a common avenue for exploration. In years past we have spent time exploring “The Gospel of Thomas” together, particularly Osho’s discourses of it. That gospel provided rich loam for our spiritual flowering. Adya’s course offers succor and a different perspective. Last evening, she captured a copy of the New Testament and marched off to bed to devour “Matthew.”
In the early paragraphs of this Blog I wrote one of my reasons for blogging was to learn and share of her subjective experience of dying. Now I know what that experience is. It cannot be put into words as it is not knowledge but knowing. I am being that knowledge and so the knowing is complete. The notion of a subjective experiencer has disappeared into experience. That may not make sense in these words but it’s seamlessly sensible. And it had been present from the beginning. I simply could not see it thinking there was something unknown which I had to learn. That thought was concealing knowing.
Actually, even that is nonsense. It is only love loving Love in Freedom.
Mollie slept a bit later this morning and remained in bed for about 20 minutes after her morphine. Heidi, a hospice nurse arrived an hour or so later to check up on how the pain interventions were progressing. Although the morning pain was severe it seemed to me to have a shorter duration than usual. “How is your pain right now?” Heidi asked. Mollie’s reply: “It’s like sitting on razor blades.” The dosage of Percocet was increased and it was suggested the morphine be increased to 1ml instead of .5. It was also suggested we pursue the possibility of a colostomy. There was some resistance to this idea from Mollie at first. Later she called her physician to begin exploring the possibilities. At lunch time she did eat some scrambled eggs and a couple of thin slices of black forest ham.
Later that evening we spoke of her daughter who recently told her mom “I don’t know what I will do without you. I depend on you so much now.” Mollie intimated that the grieving process had already begun for her daughter and it seems to me to grieve Mollie also. We both know grieving can begin long before the actual death. It’s not even unusual. I know firsthand. And who’s to know anything for sure. Cannot the dying person also grieve those they leave behind?
It’s almost boring out today. Mollie’s medication seems to be working so well today she has kept her nose in one of those page turners or napped most of the day. This has been an afternoon of respite.
Turns out yesterday was the proverbial lull before the storm. Early this morning Mollie had huge evacuations which necessitated me giving the bathroom a thorough scrubbing and washing her clothing and towels right away. The washing machine was working hard even before the coffee pot was plugged in. Then the catastrophe hit. The neighborhood sewer clogged and was not allowing drainage into the city treatment plant. The potential for not being able to use the toilet became very real. When this became known to Mollie a panic set in. “What are we going to do? I need that toilet. Do you have any idea how much shit I put into it in a day?” I do know and I also know putting 3 or 4 rolls of toilet paper along with several baby wipes per day through it increases the probability other difficulties may arise with it. “I’ve been praying to the toilet gods daily to keep this thing working for me” she said. I caught part of her panic, it must be contagious. I do have an alternate plan in case something like this happens so I said to her “Not to worry, we’ll just go to a motel until the sewer is repaired. We can find a motel which has a good toilet.” Those words caused more panic in her. I know she is embarrassed about her incontinence and the odor which lifts off of her. As my level of angst increased I became more and more aware of my helplessness. My solution to the difficulty was not acceptable to her and only increased her angst, then mine. I was caught in a self-generating firestorm.
For the first time in this whole experience of Mollie being here with me, I felt I really needed someone to talk to of my internal chaos and helpless angst. I needed help, not with the external but the inner. I did not want to do speak of it in Mollie’s presence. That may have increased her anxiety. When a moment alone presented itself, I called Lorraine and discharged some of my tension to a friend. At her suggestion, I then did some yoga and after a bit the level of tension rapidly decreased in me. A few minutes later I noticed workmen out in the street working on the sewer problem. It was repaired before we lost our toilet.
All this was a good drill for me. I got to see the onset of limitations and the feelings associated with my breaking points. I got to see my need for support and how important it is early in those onsets. I got to appreciate the value of that support. And I have a clearer picture of my need for sobriety. Not from drugs or alcohol, but sobriety from the illusions of an idealized self unaware of its real limitations and illusions of unreal elevated capabilities. It was another gift of Grace cascading. A Niagara of humility.
Later in the morning two of Mollie’s friends, Linda and Kate, arrived for a visit with her. The weather was sunny and warm and they were able to visit outside on the porch. I spent a few minutes with the three of them as I had not met these women before. It is so sweet to see how much they love and admire Mollie. Linda and Kate were so respectful and sensitive to Mollie’s endurance level. They stayed about an hour. That’s about all Mollie could handle. It’s sad to see that visitations will have to be somewhat limited in number and duration. I know there are people from all over the globe who would like to visit and say good bye to her. We know it is unlikely many will come because Mollie does not have the energy or endurance. But if the love which was present from Linda and Kate is any indication of the love coming Mollie’s way from other friends, they are already here with her.
Last evening and late afternoon Mollie had much difficulty keeping her eyes open and staying awake. I sat with her trying my best to provide interesting conversation and narratives. It was all I could do to get a chuckle out of her occasionally. Finally, I ran out of creativity and she drifted in and out of sleep the rest of the evening. I could not tell if the medications were making her so sleepy or the fatigue from the onslaught of the morning’s conflagration. She had expressed a desire to watch a performance of the Met’s Rigoletto I had recorded. She didn’t even make it through the overture before she was snoring. It was a familiar snore. I was reminded of being with her in Ashland several years ago as she slept through a rather mediocre performance of Hamlet. She managed to awaken for a bathroom break during intermission only to fall back into snoring slumber during Ophelia’s mad scene.
Yesterday Mollie’s pain level was stabilized at a tolerable level and her excretions were fewer and less painful. Kathleen was here for a few hours and provided Mollie with an entertaining and interesting afternoon of connection and conversation. Her visit provided me with some time alone and the opportunity to relax my vigilance surrounding Mollie’s needs. In the evening, believe it or not, we watched Rigoletto to the end without her falling asleep!
A conversation this morning centered on how each of us are finding lessons in humility daily. I have been living alone for several years appreciating the quite time I create in my home and having the freedom and time to come and go as I chose. I have been able to make plans and activities to fit a framework which mostly suits my options. That’s gone for now. Quiet time inside is infrequent and often interrupted. I can get away for an hour or two but going somewhere overnight is not possible. Each day is an opportunity to surrender or give up more and more of my personal agenda. Mollie too has her surrenders. Obliviously letting go of her life is enormous. For the most part, she is trapped inside this house. We have been attempting to get her to the bank for several days and each attempt has so far failed due to her lack of endurance or vitality. There are fiduciary items she wants completed there, but daily she must surrender to the limitations of her physical body. In all the years I have known her, she has been furiously independent and self sovereign. Now she must depend on me even for her groceries and toiletries. Another surrender. Her independence in the physical world is ebbing from her. We also are surrendering to the deterioration of her body as the odors become stronger and more pungent. Parts of her body are decomposing. Both of us have been careful to keep as clean and odor free as possible all of our lives, especially when venturing out into public places. Now that is not practical. We are surrendering to the awful offal.
Suggestions or insights have been made by some friends to indicate the possibility of the tumor and cancer is falling away from her abdominal cavity and may be effecting a “miraculous” healing. Nothing would please me more. But I am also alert to the potential for bargaining or denial. I know how easily I have succumbed to “wishful thinking” all of my life. It is easy and seductive for me to live in my thoughts, especially when they are more pleasing or comfortable than what life is presenting. We know often in dying that denial or bargaining can be stages of the process. So, while I would love to see this “Hail Mary” last second fourth quarter pass win the game, I’m cognizant of its allure and temptation. (Where’s Joe Montana when we need him?) If it should come about I will be the first to give thanks and celebrate. What a party I would throw, a gala to rival the Oscars. I would have my home back. I would have my life back. And most of all I would have my dear friend back even if she moved to the other side of the world. I would rejoice.
Despite the exercises in humility and a sacrificing of more and more, there is a beauty and spiritual strengthening in it. It is a purity of heart and Freedom I cannot describe. There is an opening to the soul which as we subtract more of ourselves and become less, adds to and nurtures the Freedom of being more Nothing. It’s not something I’ve experienced before. But I’m not recommending it. I told her this morning; “This dying is not all it’s cracked up to be.”
For the past 2 days Mollie has been unable to evacuate some intestinal or bowel blockage. She sits on the toilet and I can hear her painful moans which so far has produced no results. The tension in her body from trying to eliminate it is causing cramping in her neck and the long muscles in the back. “I used my gloved hand to reach up and try to loosen it. It’s as hard as a rock; it’s like stones up there.” This maneuver causes much pain as her hand must rub against and pass through that open sore. The pain must be horrendous. Today the hospice nurse tried a similar process with no results. I asked the nurse, “Could the tumor be growing up there and pushing against the bowel exacerbating the problem?” She affirmed the probability.
As Mollie now naps more and eats quite a bit less I wonder if it indicates the effect of medications or it’s part of the deterioration process as she is slips deeper into the dying process faster than I recognize. Today’s encounter with the nurse exhausted her and I noticed her wan complexion and eyes with diminishing luster. Two of her friends were denied a visit today as she told them “I can’t do it. I’m just too tired.” It makes me ponder. How soon will she be leaving us?
Often in the mornings when I do not saunter off to the gym to exercise I venture over to a nearby park for a brisk walk. I have fallen in love with several families of geese with new goslings there. I tote food for them on these walks. (They are especially fond of organic uncooked rice and un-popped popcorn.) They know me now and recognize my approach long before I’m able to recognize them with my human eyes. Honking and peeping they race toward me with hurried waddles as if they were in training to become Olympic wannabes. This morning amidst them I thought how lovely it would be to bring Mollie over here to enjoy the park. The word ‘wheelchair’ entered awareness. When the nurse arrived, I requested a wheelchair which will arrive soon. I can take Mollie over to the park and push her around or just sit somewhere beautiful. Then other thoughts and ideas took form. Mountain lakes, streams or meadows of wildflowers are also possible. What a potential! Even going out shopping the chair will relieve much of her fatigue and energy drain. Besides, I’ve been pushing people in wheelchairs around all my adult life. Good Karma…. someday, it may be my turn to ride.
I have been speaking with several acquaintances lately who have been caretakers of dying friends, spouses or relatives. The experiences they relate to me of their charges are very different than what Mollie is going through. My recent hospice training suggested that although each death process is unique to the individual, there are some underlying similarities. I am discovering these days the prototypical scenario I gleaned from hospice training and the stories related to me by others are very different than what I encounter with Mollie. Everyone I have spoken with about their experiences with the passing of their loved one comment on how “hard” or “difficult” the process was even though the death experience itself can be very peaceful and beautiful. I do not find the adjectives “hard” or “difficult” applicable in my experience at all. I’ll try to explain.
Mollie’s pain at times is excruciating but she is not suffering. Although her physical body is often in agony, there is an acceptance and appreciation of it as a mysterious gift. With the acceptance, there is an incomprehensible peace. The house is alive with its omnipresence. It’s soft, vast and intelligent beyond perception; even Love would be way too small a word to assign to it. And Mollie gives herself fully to it. I watch her do that and it becomes effortless for me to follow her out of the arena of distinctions between “easy/hard” or “suffering/comfort” into where it all originates. Truthfully, I have a tendency to snap back into distinctions much faster than she does. She lives there. Often, I’m only a visitor.
We know several people who have “Healing Gifts” and offer their services to attempt to mitigate the cancer or eliminate the pain. Some of those gifts are ‘hands on’ and others are suggestions of resources from all over the globe. Mollie declines any of these options. “I don’t know why I don’t want it” she says, “But I feel I’m doing something else with this process and it is exactly right or in divine order. I do not know why. When I check in I do not find denial or resistance, I find only affirmation.” It appears to me that Mollie’s surrender to the agony of the body is centered in her love of all sentient beings and the world. Her pain is not welcomed but ‘welcoming’ it is close to what she does. She embraces it with a Grace beyond the Cascade.
Yesterday despite the trauma she went through with the nurse and the lack of bowel movement we ventured to the bank so she could take care of her business there. In spite of the odor and her fatigue she accomplished her task. She was very unstable walking and I had to hang on to her to keep her upright climbing a curb and a few steps. After the bank, we drove to the park. She was able to take about 200 steps to a bench where we sat overlooking the lake. In the cool breezes of the late afternoon we watched the waterfowl and the people dance their ballets of life. Joggers were jogging, dogs were dogging, mothers were perambulating and Mollie was alive in her dying. How on earth could I see this as ‘hard?’
Mollie cut back her morning morphine intake to .5ml. The decreased dosage is adequate as her morning pain is stabilized by the Oxyconten tablets three times daily. We did venture into the world of a used book store yesterday afternoon where she uncovered a treasure of seven potential page-turners for a mere $3.50. “Bonanza” she proclaimed returning home, “My library is well stocked.” We were also able to stop at Ross on the way home where she purchased 2 pairs of summer pants and some night clothes. These trips were the first outings where we used the wheelchair. Quickly we navigated the glitches with it and were able to appreciate its ease of operation and the comfort it provides Mollie not having to stand or walk. She was relaxed, as much as possible, and was able to revert to one of her old shopping patterns where she could “Poke around” inspecting goods. While that may sound like good news to some, to others of us it sounds onerous! Gasp…pushing her about as she “pokes around.” “Female shopper needing wheelchair pusher imprisons male in shopping spree” reads the headlines of Michael’s Mourning Gazette. .
She is being very careful about what foods she eats as her digestive system seems less capable of processing and digesting. Vegetables which have been her staple for many years now often will not remain in her stomach. Those crispy al dente vegies have gone the way of the Pleistocene for her. Her main source of nutrition for the past several days has been oatmeal, applesauce and an occasional English muffin or toast. Some days there has been but one small bowl of applesauce. She is still drinking tea but has changed from Tetley’s to English Breakfast Tea and has dropped from 3 or 4 cups per day to a maximum of 2. Coffee has disappeared altogether. So too her favorite Zinfandels and Merlots.
Rising this morning Mollie felt OK about venturing into the park. Off we went in the car with waterfowl groceries in a plastic bag and the wheelchair stashed in back. Pushing her around the lake is relatively easy as there is an asphalt path. As we stopped next to the water many of my geese and duck friends got introduced to Mollie. (Not formally of course but rather casually via waterfowl table manners, or lack thereof.) They were delighted with the goodies she offered them. As I stood back and watched she seemed a young girl taken to the park so she could feed the ducks. It was not so different from 25 years ago as I watched my daughter excited about the same outing. For several moments, she was only Mollie feeding birds. Although she does truly live in the Now, in that particular now nothing else existed for her. Me too, except for that memory flash of Aubrey years ago. Both of us are amazed at how speedy the little baby mallards, smaller than her fist, could scurry about racing their parents to some kernel of popcorn scattered on the ground. Sometimes 5 or 6 of the little guys would move as a single unit like starlings darting in flight.
I pushed her around the lake a couple of times and we stopped briefly twice to admire the stillness and pristine beauty. The glasslike water reflected greening trees and blue sky in still quietude while refracting crystal diamonds as a goose splashed to a landing. I could not tell where the water ended or the reflections began. It’s another demonstration of Heaven already being on Earth. It’s spread out magnificently and glorious for all to live in for our allotted days of wandering on the earth. We are both grateful for the eye to see it. These few hours there as well as all of life: A Splendid Journey.
Returning home some of the old familiar pain returned causing another internal dilemma. “Should I take something else like the Endocet? Or should I just endure it?” With a few moments of quiet inside she opted for lying on her bed under the infra-red lamp which still seems to provide some relief. This is particularly true when the pain stems from a blockage in the bladder or urethra. I notice how quickly she can go from a low pain threshold to a high one. On the 1 to 10 pain scale she can go from a 6 to a 9 or 10 in seconds. I stand humble and in awe of how she accepts it without bitterness or resistance. What a teacher she is for me. I am reminded of a sentence from the psychiatrist R.D. Laing, “There is a great deal of pain in life and perhaps the only pain that can be avoided is the pain that comes from trying to avoid pain.” She has taught and continues to teach me the truth of those words.
This morning she decided not to take her 7am round of morphine. After a few hours, her pain level seemed about the same as it has been. Perhaps she can live with less of that drug.
For the past two days, she has been noticing blood in the feces/urine discharges. She suspects the lower bowel fistula has serrated, partially ruptured or has been consumed by the cancer cells. But for those two days the bowel movements have been less painful. The bladder however remains discomforting as always. Reclining for a period of time seems to be the only way it can empty completely.
I see her mindsets and emotional responses to the environment occurring in more extreme fluctuations and frequency. At times, I sense a reactivity which has not been part of her emotional climate in the years I have known her. It is getting more difficult for me to please her or satisfy her needs. Food is an example. She can request some dish and when it’s presented to her she no longer wants it or something in it does not taste right or prepared incorrectly for her taste at the moment. She was opening a box of her bio-Lumina a few days ago which was in a shrink-wrapped box. “Why do they have to make these things so difficult to open?” She became frustrated with it. Although I have seen and heard her say such things in our years together, there was a deeper level of frustration seasoned with a tang of exasperation. She wants it her way.
I’m not blind to the potential of my own levels of projection to see such events as a mirror of my frustration and exasperation. They are present in me too. When I prepare a meal, which is unacceptable to her I feel exasperated. When I try to be of service to her and there seems to be nothing I can do I feel frustrated. This is especially true when I see her in pain and can do nothing. I can think of those feelings as ‘me,’ my identity, and fall into familiar illusions of myself. “I am frustrated”; failing to recognize there is only frustration present. So—yes, these situations are mirrors of my own internal reactivity. I confess I am taking things personally more frequently than I care to admit.
As I see Mollie ‘wearing down’ I admit I am also wearing down. But my wearing down is different. Hers is a wearing out. I recognize the Grace in my projections and wearing down. It’s a gift of recognizing my attachment to some ‘ideal self’ and a tendency to move away from the sobriety I wrote of earlier into more comfortable feeling states. I would definitely prefer it to be more my way too. Alas, it’s not. “Thank you, God, I have no complaints again.” I chant. Yeah, right again. I have a dossier of complaints. I know because they keep shouting at me while judged and adjudicated internally. I detect more opportunities of Virtues being illuminated in the sun prisms of the Cascading.
Did not write yesterday as the manuscript went out to its recipients and Mollie had a day of minimum pain spending time outside reading and visiting with two friends who stopped by. Later we had some good quiet time together. But today, the 27th is a day of more pain and lots of drifting in and out of sleep.
Sometimes I get the feeling or impression she is getting better or will have more ‘good’ days with less discomfort. Thoughts occur where the possibility the “hail Mary” pass may be successful. Then a day like today shows up and I wonder if she will last much longer. More surrendering seems to be the message. Predictability or expectancy is illusory. Sometimes in this life with her I feel like a tennis ball taking a bounce then being racqueted back over the net. Back and forth I go. As I get complacent in the routine suddenly a bounce-less volley shows up and I find myself sailing over the net again wondering what happens next. I realize the mind, my mind, searches for some type of clarity or certainty. When the mind looks all it can find, is a tablet written in an unreadable script. This desire for even a little predictability creates a tension between it and surrendering. It’s a familiar old tension and I’m almost ashamed to call it an old friend.
There is a pronounced change in Mollie’s speech patterns. When she wants to relate something complex, there is a noted slowing of words and longer pauses as she searches for expression. Often, she loses her train of thought in the middle of a sentence and cannot find it again. Some days or times seem worse than others. I don’t know if it’s the effect of medications or a symptom of deterioration.
I also notice when she speaks to visiting friends or reads some e mails she expresses to me she cannot relate to them in the patterns they have shared over the years. These folks may speak of events and discoveries they shared with Mollie in the past. Now Mollie could not be less interested in this type of relating even though less than a year ago she may have been more tolerant and receptive to engaging at this level. “I cannot see why they would say or write such stuff” she says with a bewildered tone. To her it is a redundant living in and rehashing of past. As I see it Mollie is being asked by them to stay in old patterns and Mollie no longer is capable nor wants to remain there. She does not have the immediate strength or acumen to stop and move out of the groove. So she remains quiet and pretends to listen as her energy drains away.
The literature of the process of dying illuminates the behavior of a terminal patients turns more and more inward. Each individual may do something different or unique in the turning. But almost all withdraw further from external life and relationships as time goes on. Finally, many patients do not speak or open their eyes at all near the death. This inward journey is becoming more pronounced in Mollie and she has been an inward turning individual ever since I have known her. It’s more prevalent now. I see her dropping deeper and deeper into the silence of Being and less interested in or relating to past behaviors or relationships. So, I can understand; she sees these attempts by others to relate with her are their previously established patterns. They now are superfluous to her. She simply has lost interest in this level of life. Seems to me it’s difficult for healthy vital people to understand this about Mollie. I’m just getting it myself. Mollie is no longer interested in the world she used to inhabit. She is navigating less in the vessel of persona and free diving more into the ocean of Silence.
Had an appointment with a G.I. surgeon this afternoon to explore the possibility of Mollie receiving a colostomy. The advantages of the bag would be twofold. First, the risk of infection from the open wound in the vaginal area which feces must pass though would be reduced. No excretions would contact it. Second, the bag itself would eliminate the likelihood of an ‘accident’ anywhere. Practically, the cleanups of clothing and bathroom facilities would be lessened. Much of the odor which hangs on her like the Scarlet ‘A’ may also be reduced.
This morning there was much anxiety in Mollie about such a surgery. The recovery time from the last surgery she had was long and painful. Actually, it is still going on. Her angst stemmed from the possibility or a similar recovery process as the stomach muscles would be severed. “I just don’t need another thing to overcome. I am at the border of overwhelm now.” No matter how she tried to rid herself of anxiety, it persisted. And there are other obstacles in her family which beg intervention and planning contributing to her state today. I have never seen her in this state in my life. In past years challenges were thrown at her and she was able to meet them by dispelling any anxiety which arose in her. Usually the angst passed quickly and her mind became clear to learn of and select options to meet the difficulty. Not so today. I too had some anxiety about the surgery and what it would mean to not have the bag installed. Of course, I have other anxiety about whether or not I will be able to deal with her needs as the cancer progresses. Today my doubts and angst collided with hers creating tension and a communication distance between us. She recognized it first. “This friction and disjointedness between us is an out picturing of my internal state” she exclaimed. Fortunately, she brought up the eruption and we recognized the tension and were able to talk of it with each other. I recognized my internal friction too. Our individual mind narratives became so loud we overlooked the love and fondness we have for each other. As usual it vanished with acknowledgement. But only the tension between us vanished. She still had her misgivings and I had mine. They simply no longer obscured that love and caring we have.
When the doctor walked into the room where we were waiting I recognized him as the doctor who performed surgery on a relative recently and did a masterful job of it. I spoke with him in detail after that surgery and found him very competent and compassionate. So, this afternoon when he walked into the room and recognized him I knew instantly all was well. And all was well. He talked with Mollie at length and in detail. The need to incise the muscles of the abdomen is not likely. Most of the work could be done with a scope and be minimally invasive. The benefits far outweigh the risks or recovery time. “This will not be as painful nor require the recovery time your hysterectomy did. But, it will not stop or retard the cancer. This operation will not make you live longer.” he related, “But it will make the quality of what life remains for you better. Besides, you don’t want to have an infection from that open area because of sepsis. If that happened there is nothing could be done for you.” As he explained the process I could see her anxiety melting away and could feel the same happening to mine. We scheduled a tentative day four days from now. Best of all, we walked out of that office in confidence knowing this decision is exactly right. We know it is right because he too is now in this orbit of love surrounding Mollie. We did not even have to consciously invite him. He stepped right into the Cascade. Or did we step into his?
Mollie’s two sisters from England are arriving here on June 4th. Their itinerary is to remain for a week then travel on to other destinations in the States before returning home later. This may be their last occasion to be together as the remaining members of their original family.
The surgeon called this afternoon telling Mollie he will perform the operation Friday the 31st late in the afternoon. (It still needs confirmation with the O.R. scheduler.) The doctor’s words to Mollie were; “I have a long day in surgery Friday but I really want to do this for you and have you out of the hospital when your sisters arrive next Tuesday.” Here is a gentleman who truly has Mollie’s comfort and best interest at heart. We both are so touched by his generosity and authenticity. His humanity brings tears of joy to my eyes and a soaring in the heart. The alternative would have been to schedule the operation for next Tuesday June 4th and he did not want her to suffer a colostomy-less life one day more than necessary.
Despite all this good news the pain she experienced today again was severe. It was not a pain from bowel blockage or the open sores. It was further up in the abdomen. Probably the cancer is consuming more cells somewhere up there. The change in redolence and strength of odors verifies disintegration.
Heidi, the hospice nurse arrived this morning suggesting the pain medication be doubled. She intimated the pain could be reduced to a lower level. The double dosage began immediately. Even though Mollie is scheduled for surgery tomorrow and a general anesthesia will be administered Heidi wanted the pain diminished and under more control.
The down side of this increase would be the potential for constipation. The colostomy may reduce the potential. We don’t know. But the intoxicating effect of the increase could intensify her episodes of inebriation. More vigilance of her safety may be necessary from me.
Our morning conversation revolved about Mollie’s awareness of the resistance of her body to the cancer. “I find no resistance in myself to the deterioration and dying. But I do find the body resisting with vehemence. There is an irony present here as I have always been sensitive and pretty much in control of my body. The years of yoga and other physical disciplines have given me a high degree of authority with it. Now I find it’s doing something I can have little effect on. It has a life of its own apart from me. I watch it resist death and find it fascinating.” As she related this to me there was amusement present in her narrative, like she was watching a vaudevillian anomaly. I had an image of it as a petulant child stomping its feet saying; “I won’t die. I won’t let you let me die. You can’t make me!” Do any of you readers remember raising toddlers?
Since surgery is to be later in the afternoon we spent time in the park this morning with our waterfowl friends and ‘wheeling’ about or sitting in the still peace. Mollie remarked how fortunate she is to have this chair and be able to enjoy this lovely setting. “I feel so lucky that even in the midst of cancer I have the opportunity to be in all this beauty.”
A few days ago, I wrote Mollie is “alive in her dying.” That aliveness continues to kindle and billow into the world. It is exceptionally contagious. (I know because I caught it from her. I have been internally infected with an eternal aliveness.) I’m stunned how much life’s animation has been generated in me with her dying. It’s a serendipitous flourishing with more vibrancy and charm than I could have imagined or dreamed. “As I slowly leave this life I become more and more alive.” she says. And it carries right into and through me and everyone around her. This morning the sky was animated with crystal blue clarity. Wheeling about the park every instant was lavish and piquant with the aliveness of being. Yes, the taste too. There was, and is, only life living itself in aliveness. Yes, even love lives in aliveness.
The colostomy was performed yesterday evening and all went well. (The word ‘performed’ is interesting as in some places the O.R. is termed ‘Operating Theatre. In military terms a battle is frequently referred to as “Theatre of Operations!”) In this theatre, all the actors played their parts well. The surgeon was pleased with the results and no incisions were necessary into the abdomen. The bowel stoma was surprisingly easy to effect. Visiting her this morning I found her alert and in relatively low pain. The stoma itself is a brilliant pink color and about 1.5 inches (3.8cm) and is expected to shrink perhaps 20% in the next weeks. Education begins soon about pouch care and replacement.
Last evening the surgeon reported to me it would have been better for Mollie if this intervention had been done a month or more ago. These past weeks would have been much easier on her. I see from this information we could have been more pro-active. We had made assumptions about the possibility and recovery repercussions of colostomy surgery which were incorrect. Heidi was instrumental in pushing us into further investigations of possibility. As it turns out many of our assumptions and what we thought of as correct knowledge were incorrect. Lesson: It would be in Mollie’s best interest to investigate thoroughly any relative medical knowledge she or I may have which may be pertinent to her well-being and comfort. Heidi or a hospice nurse is a good place to begin investigations. The internet is not a dependable source for viable information. It can easily overload the brain with data. Often this data may be opinionated, incorrect or not applicable specifically. Sometimes even the information coming from a professional can be sketchy or misinterpreted. We will be more diligent.
It was a weekend in the hospital for Mollie which was not always pleasant despite having a lovely room with a view. Outside her window at ground level was a ‘healing meditation’ area filled with Japanese Maples, a Hibiscus tree, several varieties of flowers, sitting benches and a three-tiered fountain. Sunday morning, I went to visit her and found her in that garden but in severe pain in a highly distraught mental/emotional state. I walked her back inside to the nurse’s station and she was given more pain medication. After a few minutes, her body began to relax and the agitation subsided. I left an hour later and returned late in the afternoon to find her relaxed in bed reading and in good spirits.
When she gets into these states of distress I find it challenging to communicate with or assist her. She has difficulty following words spoken to her and responses often are unrelated to questions asked or previous statements made. Sitting in her room as the medication was administered, I heard the nurse having to repeat questions to her several times. The responses to the questions were sometimes irrelevant and busy with narration. Such communication patterns are new to Mollie. So are the states of distress. More probing is required to get meaningful responses. Although most likely there were vestiges of the anesthetic in her system, this pattern shows up more frequently than it did a few months ago.
The new bag attached to the stoma is being ‘broken in’; not unlike a new car as one becomes familiar with its function, but probably closer to a new puppy being housebroken. “Messes” throughout the house are what is to be averted. Looks like Mollie can now be tagged correctly with the appellation of “Bag Lady.” Maybe I can trade her wheelchair for a grocery cart!
She was discharged from the hospital late yesterday afternoon. Today her energy level is better than it has been in weeks. Her pain also seems reduced. There appears a possibility of an upswing for her life. The probability is she will be able to get out more and live a bit more independently. This is good news and congruent with the surgeon’s predictions. Probably the most significant improvement I can notice is her bathroom escapades are much less painful. I hear no moans or groans. I also notice the odor is less abundant. There is still a bit of the composting body redolence but it is not coupled with the fecal aromas. If the bag can prevent accidents and messes eliminating much repeated cleaning of herself, it should be a boost to her energy. I also anticipate a reduction in her pain medications as the stoma and insert points of the surgery heal. (The cancer will not affect those.) This too could be an additional boon to her vitality. This morning we went to the park and wheeled about with her chair. The jostling did cause a little pain. “Pain mostly feels like it is around the rosette of the stoma and the incision points” she reported. This colostomy is turning out to be another direction of Grace.
I had a weekend mostly to myself. I did want to clean and sanitize the house, especially Mollie’s bedroom and bath during her hospitalization. I was looking forward to a few days of solitude and relaxation for me. Instead I found myself in overwhelm with an old familiar inner tension. I’m no longer interested in describing it or searching for its origin. It’s familiar and the tendency is to indulge in internal narrative or self talk with it. As I lived with it this weekend I recognized its power to fragment my perceptions of myself. That tension became so dominant in my psyche it consumed awareness of almost everything else. I thought ‘I’ was tense and overwhelmed. ‘I’ resisted it. I thought it was happening to ‘me.’ I had to consciously stop the narrative, which was almost fully unconscious and consisted of more imagery than verbalizations, to be aware and sensitive of anything other than the tension. Otherwise all perceptions were filtered through the tension. I recognized the fragmentation and the creation of this dominant ‘me.’ With my full recognition, the tension’s power to fragment perception lost its source. The victim ‘me’ vanished with it. Consciously then I tried an experiment. I recreated the imagery in mind and the tension would return. It was very uncomfortable, but amusing. I can see clearly how this ‘overwhelm’ is an old identity of victimization and how it could, and at times did, take over much awareness. How easy it is to slip into it! All that needs to be done is forget who I am for an instant. Off and on, it has been with me for years. I write of this because as this life continues with Mollie this ‘old familiar feeling’ continues to show its hydra heads. I can lop one off but there are a thousand more to replace it. My challenge and opportunity is to welcome it the way Mollie welcomes death without identifying into it and indulging in its temptation to fragment myself by avoiding discomfort. I become a ‘me’ separate from the discomfort when I resist it. Truly, I can be the overwhelm rather than the one it is happening to. Thinking it’s happening to me is an insidious form of self-importance disguised in the vernacular of the victim and unworthiness. And none if it is True even though it happened.
It’s also an out picturing of what is happening between my life and Mollie’s. She has cancer of the body and this cancer of mine is of the emotional body. You can make whatever significance or depth of this interaction you wish. I don’t care to. But I recognize something is going on which is beyond my intelligence or comprehension. It’s another way love is moving us about the chessboard of life. This love which directs us is not always beautiful or uplifting. It can also be unpleasant, raw like Mollie’s open sores and difficult to be honest about; like admitting victimhood. It can sometimes lift us into bliss or plummet us into overwhelm or victimization. It’s easy for me to enjoy or encourage uplifts and bliss. Welcoming or hallowing overwhelm honestly is more onerous. In the long run overwhelm can be more fruitful as a Virtue when revered and its bounty extracted. And it is a Virtue the same as Charity, Compassion, Fear or Betrayal can be. Victimization is Love. It can lead us to wholeness exactly like the more recognizable virtues.
Mollie’s colostomy has improved her life. The pain level has dropped, color has returned to her skin and she can walk about with less discomfort. This is a definite upswing. There are still episodes of painful surges, especially around urination. Emptying the bladder can be challenging. Lying under the infra-red lamp while reclined before attempting to pee is still produces the best results. I have some hope she may be able to go visit Mt. Shasta for a day or two. Friends wanting to drop by may find her more available and amenable. The recovery from the surgery seems relatively easy. I have not heard her mention any discomfort other than in the wheelchair at the park.
Fitting the bag adhesion around the stoma is going to take some practice. A circle must be cut into a patch which adheres to the skin. This cut must be close to the size of the stoma and be executed by hand with scissors. Each patch is good for only a few days and must be resized as the stoma shrinks. Shrinkage will continue for a few weeks.
Her sisters arrived the 4th and had short visit with Mollie and me before settling into their domicile at Laraine’s home. The following morning, I left for a few days respite to Dillon Beach. Mollie’s daughter Carrie will stay until the weekend. I will have a 3-day hiatus and the family will have a chance to connect together perhaps for the last time. I feel very comfortable with Carrie there. She is possibly the only person I have absolute confidence in to tend the home and Mollie. I’m grateful to have the opportunity to get away.
Today is my second full day away from home. Night rests have been deep, peaceful and nurturing. I recognize my nights at home the last weeks have not been as restful as I would like. Here the vigilance is absent and there are no thoughts about what may need attention or organizing. The first night here I went to bed about 8:30 as a shroud of fog settled in muting what remained of the days light. Sleeping deeply and undisturbed until before 6am I awoke refreshed and vigorous. Waking in such a state is also an ‘old familiar feeling’ which I have missed the last weeks. Last night bedtime was a bit later and at high tide. Listening to the tide lap against the steps as the high water was only a foot away from my bedroom; I drifted off to sleep hearing the music of the sea. Yes, a few days of R&R. (Rest & Respite)
I did speak with Mollie yesterday as Patricia, Jill and Carrie were all together. She reported all is well at home and she was enjoying being with her family. I was serenaded with a chorus of “Happy Birthday” by them and well-wishing of birthday blessings.
Looks like I’m able to spend another day at the beach. The weather turned sunny and a little warmer. I phoned Mollie to check in. Her report was Carrie could stay and that freed me for one more overnight. Mollie did report some difficulties and more surges of pain which required additional medication. She did not elaborate except to tell me the wound care (stoma) nurse was there yesterday. Apparently the “poking about” the stomach and stoma caused her much discomfort and pain. I was informed I’d receive a full report on my return. I sense her reticence to elucidate further was because she wanted to encourage me to spend another day by the ocean. Speaking with her I heard some ‘shakiness’ and inward energy in her voice although there was an attempt to be upbeat as she encouraged me to take advantage of the opportunity to remain another day. Had she been fully forthright she knew I would be tempted to return home. Her sisters and daughter did go out to dinner last evening with her. That is the first meal she has taken away from the house since arriving in April.
These days with Grandmother Ocean are restoring my body and mind. My soul is intact as she sings to me. I have missed her Siren songs as her voice is sexy, alluring and nurturing.
Returned home this afternoon to find Mollie is pain and a report from her daughter Carrie these last two days have been difficult. Mollie tells me the pain is located in the urethra and rectum. I’m surprised about the rectum. The bladder has not been able to empty easily. Even reclining under the lamp seems ineffective. Carrie was still here when I returned and departed an hour or so later for her home. The reports I received from Carrie and Mollie of the last 4 days is that Mollie was energetic and highly conversant until yesterday afternoon. Patricia and Jill were here frequently “There was constant and animated girly talk” for those days according to Mollie. “It’s a good thing you weren’t here. You would have hated it!” I wonder if that’s correct.
Shortly after Carrie left Mollie tried to be conversant with me but fell asleep. The household energy changed with her daughter’s departure and my arrival. It’s quieter and softer. Mollie relaxed. Later she said, “There has been too much activity and excitement. I’ve got to do less. I miss the peace.”
There have been some changes in how Mollie is medicating herself and because of my absence I have lost contact. Yesterday she took her first oral Dilaudid. It is to be taken when the pain level accelerates quickly. It is a stop-gap drug. She had good results with it intravenously while hospitalized, it’s quick acting but short lived. The oral dose will probably act differently. I may find out.
I missed Mollie while I was away. I know these moments are precious and fleeting. Last night as she wandered off to bed we hugged and she said, “I missed you Michael. I missed you a lot.” She too knows how precious each second of life is. I know she knows it; she helped me to learn it over the years with her patience and love.
The optimism I had last week for Mollie’s improved life with the potentiality for some more outings has eroded. Her pain was so severe this morning she took some extra medications and still the pain persisted. With the ingested medicine, she became very inebriated. Her eyes lost their luster, drooped and her speech became slurred and at moments incomprehensible. She wanted some fried eggs for breakfast and I would not allow her to cook them because she was too incoherent and unstable to be around the stovetop flame. Or so I thought. I am now more alert for her safety. I cooked the eggs myself although she wanted to do it. Later Heidi showed up and ordered Mollie to increase her medications even more! Heidi told me it looks as if another deterioration stage of the cancer is evolving. She also recommended Epsom Salt baths to relieve some of the soreness around the rectum and vaginal areas.
I went off to the gym and intended to shop for some groceries afterward. While working out I called Mollie a couple of times with no answer to either phone. I was concerned because of her intoxication. Skipping the shopping I raced home and found her passed out asleep on her bed. When I write ‘passed out’ it is correct. Two hours later she awoke and spent most of the afternoon trying to collect herself. She did not really know if it was day or night. I made her tea which provided a little restoration in the re-grouping and orientation.
This evening Patricia and Jill arrived here to say their farewells as they are off for Santa Fe tomorrow. When it was time to leave I intended to absent myself so they could have a moment to say goodbye to each other as sisters. The circumstances did not permit my vacating. As they said farewell and embraced I stood a few feet back. The sadness was substantial; I could feel it all over my body. So was the love. Those three women had lived together through much of the bombings in London during WW11 and the War’s aftermath even though they were children. Those three women had spent about the first 20 years of their lives together in the same house. Those women had seen each other through the vicissitudes of life, death, births, marriages and divorces even when they lived on different continents. Tonight, is most likely the last time they will see each other alive. How could they not scream “Thank You, I Love You. This is my beloved sister in whom I am well pleased. I’m so grateful to be your sister.” I know they felt it; I felt it. Although I was not there all those early years with them; I sure felt it now. But no one said it tonight. I said it to Mollie later. What I wholly felt and know fully is there is no difference between the sorrows of grief or parting goodbye or the joy of hello and welcoming a new baby’s birth. There is no difference between joy and sadness. None whatsoever. It’s exactly the same love. The only love. Sometimes, like tonight for me, it’s impossible to detect whether the tears are from grief or ecstasy, from the sorrows or the privilege of being alive. Somehow, it’s no longer a relevant distinction. But I do know this: never die without your heart being completely full. Full of the love all the people in your life have for you.
Let it in. All of it. There’s room for everything there. The heart can burst and still there is room.
Jill and Patricia flew out this morning. In a week or two they will be home in England. For the remainder of Mollie’s life their conversations will probably be by Skype or telephone. (Mollie refuses to use the camera.) Conversations will be auditory only!
Later this morning we wheeled around the park lake and stopped to invite the waterfowl over for “wheelchair tea.” It’s a human visitation sans invitation providing some leftover toast and popcorn kernels. (Not a proper English tea is it?) There is a surprising amount of conversation in this get-together but it’s hard for Mollie or me to get a word in with all the honking, peeping and quacking. (They are not much interested in what we have to say anyway.) We ambled about for a while before Mollie became fatigued with pain. Sitting in the chair hurts the rectum and the pelvic bones. I wonder if the cancer has metastasized into and is now attacking the ilium. The MRI taken in early April indicated possible cancer on the pelvis but her divinations with the pendulum indicate not. Returning home Mollie reported there was an unusual amount of blood seeping from the vaginal area. It is not really a vaginal area any more. There’s no distinction between vagina and anus, only an open wound.
This evening after dinner outside on the deck as we watched a magnificent sunset with wispy peach clouds streaking across the sky, our conversation centered on Mollie’s remark “I wonder how many more of these I will be able to experience.” I asked if she was still aware of her essence and how dying was not happening to her. “There comes a point where yes, I’m aware and sure this is not happening to me, but through these eyes how many sunsets, how much more beauty will they see before they no longer see anything? There is something significant about this body and its senses.” As she moves further into life-death it becomes more apparent there is no distinction between living and dying, between human and divine either. Like grief and ecstasy, birth and death, human and divine are the same love. Identical, the only real identity. When she dies she will be missed by many of us. I’m beginning to see she will not only miss those of us who love her, but she may also miss the body’s aliveness and splendor. I’m awed by how much dying is life. They’re the same. I bow with gratitude in reverence at it’s a mystery.
Mollie slept until 9am, much later than any day recently. After rising she began sorting through several different colostomy apparatus, which had been mailed to her. Several companies manufacture different types of collection bags making a choice of which type to employ daunting. Seems like experimentation is the only way to determine which will work best and easiest. ‘Easy’ is not in the vocabulary or nomenclature of bag application or selection. It will take time, effort and organization.
A brief appointment with the surgeon for a checkup this afternoon affirmed the stoma and environs are healthy. He suggested we contact her primary physician to attempt improving her bladder functioning and lessening its pain. The medications she currently takes are not effective for the elimination discomforts. Driving home she remarked, “I feel the medications are not working. All I notice is I’m constantly stoned and in pain. Right now, it’s an 8. I’ve got to do something different.”
When Mollie awoke and came out of her room to make her morning tea I was busy answering some e mails. Without paying much attention to her I said, “Good morning” and continued writing. I was aware of her moving about the kitchen and had I turned around I could have seen her only about 20 feet distant. But I did not turn. She set her cup to steep and walked over to me asking for a hug. “Sorry to bother you but could I have a hug? I’m feeling very fragile this morning and need one.” I jumped up, “Of course.” I put my arms around her and she felt so vulnerable and shaky. “I’m sorry” I said, “I could have paid better attention to you instead of kept writing.” I was ashamed at the way I had overlooked her. She is reluctant to ask for something like a hug so I know if she does it is very important to her. As I held her I became acutely aware of how precious she is. And she is becoming more vulnerable. I allowed myself to be absorbed into that fragility and vulnerability. Her time with us is waning. I will be more alert to savor every second I can with her.
Later this morning Heidi came to check in. In a conversation alone with her she suggested the cancer is growing very rapidly and things probably will progress quickly from here. I have written to some friends about me noticing a transition in Mollie’s deterioration since I returned from Dillon Beach 5 days ago. The transition is more noticeable today. Each day I see a change. Heidi said “It’s going to get worse for you. More is going to be required of you very soon. Are you up for it?” “Yes, I’m up for it and solid in my intention” I told her. But truthfully how could anyone know they if they are ‘up for it.’ I don’t even know what it means, or may mean. To say there are not misgivings or doubts in me would be disrespectful to me and to Mollie, way out of integrity. I speak often with her of this trepidation to keep it out in the open sunlight of truthful relationship. We both need the warmth of this sunlight.
Blood now comes more often and effusively from the interior of her body exiting through the vaginal-anus cavity. Urinary incontinence is more prevalent the last few days. She has been folding toilet paper into her underwear to absorb the drips of urine. Now they are now more frequent. But they are still drips. The bleeding which up until yesterday was also only a few drops. Today it has become much more. She showed me her pad of toilet paper which had been in only an hour or two and asked, “Does this seem like a lot to you?” It did. I asked her, “When you menstruated on a heavy day in the past was it more than this?” “I don’t know,” she replied. Later she told me the amount of blood she showed me was more than any menstrual day she ever had. The odor is unmistakable. It is now stronger and has the definite pungency of blood along with the smell of flesh decomposing. The blood it is fresh and bright colored, not dark like blood which has been sitting around oxidizing or putrefying.
Edema is manifesting in the lower legs, particularly in the ankle, feet and lower calf. The indications are the kidneys are not processing fluids sufficiently. Waste material, which would ordinarily be secreted through the urine from the vascular system and kidneys is now flowing to the lowest spots pulled along by gravity. Yesterday the surgeon intimated the reason for this is the tumor is expanding and putting pressure of the lymphatic system inhibiting its function. The antidote for this would be a drug which would cause the moisture in the legs to be reabsorbed into the blood and then run through the kidneys. That may require another drug. Of course, these drugs have side effects which are not pretty. These two drugs are counteractive and counterintuitive to one another. It’s another dilemma to be confronted and experimented. All this was discussed with Heidi this morning.
Heidi is a wonder and a gift of grace. Mollie and I agree we would be delighted to know her personally but she is cast into a professional function of “Hospice Nurse.” As she tries to project this professionalism, the human side of her leeks out through the veneer of her career as she realizes she cannot, and probably does not, want to contain it. Her human-ness overrides the professionalism with endearing charm. It is amusing to see her attempt play the role of nurse. Although she plays it well, is very competent and knowledgeable in her work, the love she shows is the Love she is. She already is a friend despite the role she must play. She is part of the Grace in the Cascade.
Mollie spent a good part of yesterday sleeping or napping. When she was awake, it was sometimes difficult to communicate with her. Often her speech was slurred and sentences she spoke were incoherent. Hopefully, this was a result of the medications. They seem to have different effects from day to day. Several times she tried to read and fell into sleep after reading a few words. Sometimes the book remained in her hands. She attempted to spend some time with her e mails and wound up staring at the computer not moving for long periods of time. We did foray into the bookstore where she found 7 new books to read. The trip took less than an hour but seemed to fatigue her more than I would expect. In the evening, we watched a 2010 recording of the Met’s production of Don Pasquale. Mollie was delighted in the production with its insouciant plot, superb singing, acting, choreography, orchestration and staging. All told, it was a brilliant production, “The best opera I have ever seen” she commented. It was the only thing yesterday which held her attention. Last night she had a bowel movement into her bag and we changed the entire apparatus to fresh ones. This morning she did not remember the B.M. or bag change.
Yet today she seems more alert and coherent. We spent some time wheeling in the park. But there is still intoxication from the medication. She is aware of her disorientation. “I don’t know if I should keep taking this pain medication. I’m so discombobulated and I keep misplacing things” she said as she was searching for her pendulum; an item she uses frequently.
Two of Mollie’s friends came by to visit this afternoon. One had come all the way from Australia and the other from Arizona. Although they are on their way to Mt. Shasta for the week, they came miles out of their way to visit here. They stayed about an hour and a half. The conversation was animated and it was good for me to hear Mollie telling one of her ‘stories’ of traveling even though I had heard it from her two nights before. Her delivery was lively and elicited much laughter from the visitors. Mollie had a good visit. I am grateful she still has the desire and energy to connect with her friends. She was tired afterwards and immediately went to her lamp.
Mollie slept until 10am. Awakening she said she still feels “pretty good” and the pain is about the same level as yesterday. “But” she said, “I must get some diapers today. The incontinence is worse. Last night it was a gusher and I had to jump up and run to the bathroom several times.” The bladder now is constantly leaking. The good news is the blood seems to have returned to more of a drip. It is less than it has been for the past days.
So off we went later to Target in search of Huggies for large children. Yes children. She has been informed by ‘one who knows’ that the child versions are more absorbent than the adult versions. (Might be good info for me to file into memory for myself…. just in case.) It was an easy chore. Afterward we stopped into a Starbucks for coffee and a goodie. I was excited for Mollie to have this opportunity to be somewhat out and about. Her energy and pain levels were tolerable. She suggested going for a drive in the country instead of returning straight home. So, we did. After driving a while she began to rock and squirm in her seat which indicates to me the pain level is increasing. I headed toward home. When we arrived she asked, “How long have we been driving?” “About half an hour” I said. “Only half an hour? It’s amazing how much life and beauty you can fit into half an hour drive. I’m discovering that more and more these days.”
I pray we have many more of these good days. Good days with Mollie are exceptionally good.
As Mollie falls deeper into this process this last week I’m discovering the difficulties for me are increasing both physically and emotionally. She now needs me more to do things for her she did for herself recently. Even deciding what she may want to eat can be difficult. I must present options or suggestions to her. Even then choices are not forthcoming. Sometimes I present a verbal menu similar to something akin to restaurant options and still no decisions. Even though I understand such situations are expected parts of the process sometimes I become aware my internal dialogue can initiate thoughts like “This is more difficult than it needs to be.” I want direct answers and a clean direction of action. Neither is as forthcoming as I would like it. I have no resistance or problems with being chef, housekeeper, medic, entertainer, bookkeeper, friend and several other roles which are needed. I can wash dishes often and well, but when things turn wishy-washy and action is required, I have a proclivity to feel frustrated or exasperated when I cannot take needed action.
The above paragraph is only an isolated moment in the time we are spending together. There are several other events which can evoke similar responses in me. Yes, there are other latent tendencies (vasanas) showing up too. As I delve into this ‘aliveness’ of dying with Mollie, “Aliveness of Being” matures in me. These challenges are opportunities for me to appreciate my emotional reactivity as a virtue. That means not changing the circumstances which elicit frustration and exasperation because those reactions themselves are the real gifts. When I see Mollie unable to make clear choices she is a mirror reflecting my choice-less reactive emotional patterns. I now have the opportunity to fall fully into those emotions to their cradle of redemptive Love. It takes some time, effort and resolve to follow the emotions through this egoic abyss. When I do I discover something which I would not have thought. If all I did was change my emotional responses, or try to get rid of or avoid them, I would overlook their nucleus of Truth. It’s another example of how frustration or exasperation is a Virtue. Virtuous choices involve welcoming frustration and exasperation instead of trying to negotiate them. They too are gifts of Love which lead us to Truth.
I write of this in the Blog as it seems a central part of the unfolding and unexpected motifs of these few months. Already the journey has taken twists and turns which could not have been anticipated. How emotions like frustration, fear, grief or even hatred could be experienced as a virtue is a bit unconventional. These realizations deepen for us as we open. As Mollie and I go through this process of dying/living, more facets of Love keep showing up and find expression in the Blog. They may, or may not expand as the Blog’s panorama unfolds further. We will have to see.
Mollie received news yesterday that Amorah Quan Yin (Barbara Deerheart) died. (She had many names.) Apparently, she passed away more than a week ago but the news reached Mollie yesterday. Barbara had been a teacher and friend of Mollie several years ago. “I had quite a shock today” Mollie told me, “My friend Amorah Quan Yin died. I received an e mail that said she had passed. I’ve been trying to find out more details.” As I looked into Mollie’s eyes I could see the shock. She assembled some crystals and angelic statuary together and constructed a small altar to Amorah on her bookshelf.
Amorah had been an important teacher and initiator in Mollie’s spiritual enfoldment. I had the opportunity to spend 4 or 5 hours with Amorah soon after I met Mollie. She had an often unrecognized, beauty which shone through a human body fraught with illness, organ difficulties and challenges to locomotion. Her radiance was such that I did not even notice those things about her until today when Mollie told me and I searched my memory of her. Amorah Quan Yin is another part of Mollie’s life, another important woman and teacher, she is letting go of.
The Great Colostomy Bag Interlude
It was shortly after bedtime when the lower intestine let loose with a bowel movement. Emptying the bag indicated it was time to change it. One type of colostomy bag, the only type we are familiar with, is a two-part invention. The back part of the patch is about 5 inches in diameter and adheres to the stomach skin. The center must be cut by hand to fit closely around the stoma. The other part is the actual bag which collects waste material. Changing the old bag leaves the stoma exposed with no collection potential until a new bag is in place. This is where our interlude begins.
Late in the evening, Mollie shaky, in pain, old bag discarded, we measure the exposed stoma and determine it needs a 1&1/2-inch dia. cut. As she begins to cut while sitting on the toilet, not the best place to make a precise scissoring, she hands it to me and I head to a chair to sit and execute the circle. Cutting away I fail to notice she moves from her bathroom perch to sit on her more comfortable bed. Returning to her with the patch ready for adhesive she reaches for the glue next to her on the bed when out of the exposed stoma flows fresh gobs poop. A cascade of it runs for a couple of seconds, not a solid turd, but liquid-like with the consistency of chocolate mousse. Reaching and cupping her hands under the stoma to catch the poop she quickly discovers her handy cup runneth over. My laughter was not appreciated as this poop overflowed from her hands onto her naked lap. And still came more! “Eeeekkkk..Michael help.” was her feeble scream. I could only continue to chuckle remembering changing diapers on the kids as babies and seeing poop flow out of their uncovered bottoms while they giggled and squirmed with delight. She started to rise up probably with the intention of heading to the bathroom. “Don’t move” I said, “Or we’ll have poop all over the bed and floor. Stay put. I’ll take care of it.” I stepped into the bathroom, grabbed a few hand towels and began to wad up and dab most of it off her. Finally, able to walk to the bathroom and clean herself more thoroughly she too then began to appreciate the humor of the fiasco. Such was our first colostomy bag changing together. We missed getting it on video so it will not appear on U Tube!
Sipping tea this morning on the deck Mollie commented, “I hope the doctor today can give me a good estimate of time left or to what extent the cancer has progressed. There’s no sense dragging this out.” When she woke up this morning her legs were in pain. This pain has been creeping up slowly day by day. For the past few days she has been using a cane to support herself as she walks. “It gives me more stability” she says. Heidi had a telephone conversation with her earlier and told Mollie the pain might be the cancer attacking the femur and lower leg and feet bones.
And despite this pain and challenges she faces she remains very considerate and aware of what I might need for myself. This morning I was having a conversation with Lorraine as Mollie was preparing to make tea. Suddenly she disappeared and I could see a light on in her bedroom. After ending the phone conversation, I went to her bedroom and asked why she was in here reading instead of having her tea. She replied; “I came in here because you were having such a delightful time I did not want to disturb you. I know talking with her is nurturing and important to you.” How thoughtful Mollie is even in her discomfort. She encourages me to spend as much time as I can with friends or activities which are important to me and no amount of pain or discomfort stops her from expressing appreciation. Leaving the bank this morning she remarked, “I want you to know how much I appreciate your help. No one has ever given me the care and support you have. Not in my life. I kind’ a like it!” The sincerity of her words is unmistakably heartfelt. There are many rewards for me in these weeks with Mollie. Her heartfelt expressions of appreciation are reward beyond lavishness. One of my favorite Christian Mystics, Meister Eckhart wrote, “If all you ever say in your whole life is Thank you, it is enough.” Mollie says it daily.
This afternoon one of Mollie’s dear friends phoned to solicit support as her husband has a serious medical condition and is not addressing it medically or emotionally. Although Mollie had her usual difficulties through the morning, she found the strength and time to support her friend as best she could. Mollie’s compassion and love extends far into the world and beyond the limits of time. I’m often amazed at her. I probably shouldn’t be; she’s been doing it ever since I met her. But amazed I am.
A visit from Heidi this morning supported Mollie’s decision to lower her dosage of pain meds. She seems to be doing OK with the lower mgs. On the other side of the equation her blood pressure is too low. This morning’s reading was 63/40. Her resting heart rate is also high. 90 beats per minute is frequently its lowest level. Often it has been above 100 and as high as 120 while resting. Higher readings are occasioned when she has been moving around and active. I have tried to make some sense or conjecture about the significance of all this cardio information. What I always find is a mental spiral which winds up at the same place it began. I have felt like the snake Ouroboros with its tail in its mouth rolling pell-mell downhill. Fortunately, at the bottom of the hill lies a flat meadow where rolling ceases and the peace of ‘not knowing squat’ dwells. It’s home. Questions vanish.
For the past two evenings Mollie has been gagging for about 20 minute periods of time. This extended duration is something new. The first evening happened at bed time. I was already in my bed when I heard her gaging and vomiting. After 10 minutes or so I got up and went to her bathroom. Knocking on the door I asked; “Summerland, are you OK? Do you need some help?” “I’m all right. I’ll be out in just a second.” A second turned into another 10 minutes or so. Finally, I heard her emerge and the door closed to her bedroom. Sleep arrived.
Last night the gagging erupted a few minutes after dinner. This time no vomit would come although the contracting spasms of retching were present it. After several minutes, she came into the den and sat in her favorite chair trying to be still and quiet. I rolled an office chair over next to her and held her had on the soft chair arm. We sat still and quiet watching the daylight fade to grey darkness. As the light waned so did her gagging. Our hands perspired on the warm fabric but we did not move.
This morning the symptoms were present again although less in intensity and duration. She indicated the catalyst was the syringe of morning medication she takes under her tongue.
Her speech and communication efforts frequently fall short of her intention lately. Often she will start a sentence and halfway through it forget what she wanted to express. Searching for words and not finding them is becoming more prevalent also. Lately, I have seen her drift off for several seconds or minutes while relating something to me. Often there is a response like, “Oh, I drifted off, somewhere didn’t I?” Sometimes after speaking those words she drifts off immediately again.
And yet there seems to be memories of childhood in her English village returning. She is telling me events and circumstances of her young life she has never told me. Yesterday she told me of the “Girls Friendly Society.” It was a group of girls in the village. They would meet with mature women and be taught to do things like fine embroidery. Sometimes they would go about helping people in their garden with weeding or other chores. All these activities were centered around the church. Although Mollie never has been very religious she has shown me the church was the center of English village life. She also spoke of the hymns she sang as a child and the impact they made on her. “I got a strong bond to other villagers and an important sense of community which has never left me.” I think I have learned more of village life these last two weeks than all my other years with her.
Now simple things are giving her such pleasure. Watching the bird antics while resting on the porch or eating are examples. Food is tasting especially wonderful to her. She will savor the most taste-lacking bits. Two nights ago we were almost out of food; all that remained was an old zucchini and a frozen chicken tender. I created a meal out of those nothings which she raved about. (Shades of the miracle of the loaves and fishes.) I was surprised. I’m an excellent cook but I thought that meal quite mediocre. Not Mollie, “This is fabulous” she said.
These events and conversations can evoke unfamiliar feelings and thoughts in me. There is a hollow emptiness which is closer to numb than neutral when I recognize the Mollie I know and love is disappearing, slowly eroding to something or somewhere I do not know. There are still moments where she is present and mostly lucid. We still have deep and interesting conversations sometimes and there are minutes of teasing or humor. But those minutes are becoming less frequent. There is sadness to all of this as I would expect. There is also a question which has no answer. I wonder what life will be like for me when Mollie is no longer here. Even though the last 10 or 12 years our contact has been limited, the sense of her presence and availability has never been missing. Even for those 2 or 3 years where we had no physical contact, she was only a phone call or e mail away.
Yet speaking with a friend recently who lost her husband several years ago we are aware he is still present with her in another form. I never knew him in life but I do know him as a form he is now. I think the same will be true for me with Mollie. But of course, I cannot be sure. When I sit quietly with her absence that empty numb-neutral feeling returns. Part of that feeling is I do not and cannot know anything beyond this instant. In this instant, Mollie is slipping off somewhere.
Then there is often an interchange we have referring to her departure. It’s something Ramana said shortly before he died when his devotees asked him not to leave them. “Where could I go?” he said. Mollie says it too.
After a relatively peaceful and productive morning with pain levels in the moderate range Mollie suddenly had an excruciating pain surge in the rectal area. Taking some syringe medicines under the tongue caused her to begin gagging moderately. She could not then take a pill which may have helped diminish the surge. She was gagging too much. Putting a pill in her mouth caused more chocking and she spit it out before she could even think of swallowing.
Her body became tense and she began to pace about as best she could carrying a hand towel to throw up into if needed. After a few minutes I heard, “I’m going to lie down under the lamp and see if I can relax.” A few minutes later I checked on her and she was asleep on her bed with the Infra-red lamp. Over an hour went by when her cell phone rang and startled her awake. She has always been a slow to awake and this time she had been roused from a deep sleep. There were family problems which demanded her attention. The shock of the cell ringing and the situation frazzled her, she had to hang up saying she would talk later. But she had already tried to engage with the person on the phone. She came out into the den in a deep state of shock, almost panic. She could not deal with the situation and even though she was coherent her words and actions did not make sense. “I’ve got to solve this problem” she said referring to whatever the family concern was. Her body became tense, shaky, and her movements erratic. She paced about. After a few minutes, I got her to sit down and start to recover. First step in this recovery was simply to wake up slowly and come back into this dimension from wherever she was during her nap. It was past time for her medication and I suggested she take it. “I cannot take it now; if I do I’ll just vomit it up.”
This gagging and choking behavior is something new and has her concerned. At first it was precipitated by brushing her teeth. A few days later oral syringe medication could also activate it. Now even taking pill medication can start it or it can begin for no discernible reason. Sometimes the chocking is accompanied by vomiting, other times not. But the esophageal and abdominal contractions indicate retching is imminent. It’s frightening and perplexing for both of us.
“Michael, what did they tell you about the progression of the cancer when it gets to the chocking and vomiting stage” she said earlier? “Mollie, they told me nothing except we have some medication in the refrigerator which is supposed to help. There is nothing I am keeping from you. I have no knowledge or information I have not told you. I will not keep anything from you.” “I just want to know what to expect” she said. “I want to know what is happening and the stages of this progression.” After she said those words I could see her confusion and the helplessness of not knowing what is happening and what comes next. Me too. I don’t have a clue. We both are riding a wave not knowing when or even if it will break against the shoreline. If it does, will it be a sandy warm beach with gentle and misty spray or a roaring and thunderous spume on craggy boulders? When I feel into this, I find a marriage of fear and sadness and nuptial apprehension about the impending consummation.
This has been a good morning for Mollie. All morning the pain level has been low with no episodes of gagging. But we have no running water in the house today as repair is happening to the sewer system in the street. (Yes, the same sewer which was problematic a few weeks ago.) We have plenty of drinking water and have squirreled away several cooking pots full of wash water. What’s the down side of all this? The answer is: toilets cannot be flushed. Non- flushing is not something a person who uses the toilet 10 or more times per day anticipates cheerfully. Mollie is tense and we are taking short breaths.
Heidi showed up about 10am and ordered some different medications for the times Mollie becomes tense with the onset of pain. As usual the time spent in Heidi’s presence is charming and informative. After her departure, we left on a little adventure. Off we went to the Newcastle Produce Market. There we found some very good vegetables and fruits. (Yum, white peaches!!) We also enjoyed a cup of coffee and Mollie devoured some quiche there. Once again instead of returning directly home we had a drive through the countryside. Mollie enjoys these jaunts into the green lushness and open space. Despite her not being able to walk or hike through the landscape, I too relish these drives with her.
Earlier in the morning I had a phone conversation with a friend which touched on the number and problems of refugees on this planet. Seems as though more and more people are being displaced from their homes and countries while are seeking refuge in countries like Australia, Canada, the United States and others. Some refugees have been evicted or left their home for political asylum. Many others have been displaced due to ecological disasters such as floods, earthquakes or such. Mollie’s friend Catherine, who visited here last week, works for the Australian government attempting to help many applying for sanctuary there. She tells us Australia cannot take but a few percent of the applicants.
I write of this here because while sipping coffee at the Market this morning we had a conversation about how the ecological and social problems of the earth and Mollie’s dying are reflective of one another. I said to her; “The cancer in your body is just like the cancer growing on the earth. The earth, being a sentient being just like you, is being consumed by blight similar to the one consuming you.” Yes,” she said, “I have always known this body is the earth. All of my life I have known and experienced it. When there is an earthquake somewhere this body trembles also.” I know that is correct because I have been with her in years past when it has happened. I have witnessed it.
For several years I have been aware of something which happened to American astronaut Edgar Mitchell on his flight to the moon. From space, he looked back at the earth and in a flash was graced with a significant epiphany. He realized the earth is a sentient being, just like you or me. Like us; it too contains states of consciousness. It has a different type of intelligence than us perhaps, but so does a dog or an eagle or a salmon. This was such a profound experience for Mr. Mitchell he later founded an organization to explore the relationship between science and consciousness called the Institute of Noetic Sciences. It still supports scientific exploration beyond conventional paradigms. Both Mollie and I know Edgar’s epiphany is sound and are grateful for his endeavors at planetary amelioration.
We spoke today over coffee about how we humans are the cancer answerable for eating away our planet. I felt the same sadness or grief I feel for dear Mollie’s dying as I do for the murder of this beloved planet. It is the same. And I feel remorse for my complicity of participation in the plundering.
Last evening, we watched a recording I have of a recent production of Donizetti’s comic opera L’ Elixir d Amour by the MET. Once again Mollie was delighted with the performance of an opera. “It is so lovely. The heartfelt passion, beauty and elegance of the performance are magnificent. I feel so expanded. I’m transcendent and the room is shimmering with luminosity. I could die in this moment. If I do, my life would be full and complete. I feel so expanded.” I am thrilled she is able to share and appreciate some of these presentations with me. I have loved opera for many years. Although we attended a couple of performances together years ago she was mostly lukewarm about them. To see her as excited about them as me makes the sharing even richer. This morning she remarked, “The opera is still with me. I still feel its expansion and openheartedness.” I am pleased Mollie can still enjoy discovering new facets of life’s charming and enchanting opulence. In this dying experience Mollie is awakening to new elements of life. “I’ve never been more alive than I am now in dying. It brings me more aliveness.” I’ll write it again, Mollie is alive in her dying.
Had you asked me three months ago what my life would be like in the role of Mollie’s caregiver I don’t think I would have been able to give you an answer. Today’s only response may be this Blog and her being here is far more than only an exercise or opportunity to express love and caring for her. It has been and is still one of the most profound, enlivening and deepening occasions of my life. I have been surprised by how much expansion of life there is in the assumed contraction of dying. Three months ago, I could not have known treasures which have been uncovered. The subtractions of dying are revealing bounty in the emptiness of having nothing left. Even in this surrender we discover how much the insistent compulsion to cling to something struggles to dominate and how each grasping reduces some of the exquisite abundance of living. The glass is only full when nothing is in it.
Today the gagging seems to have improved, probably because of a medication which arrived yesterday. “I was able to brush my teeth, even the back molars” she said. “There were only a few short chocking reactions, nothing serious.” But pain remains in her legs and hips. She often uses a cane to walk about the house and always whenever we go outside. The swelling in her lower legs and feet has not reduced the past days. There is something preventing the toxicity which would normally be excreted through the kidneys and bladder from running the normal course. It is not a good sign but at least the swelling is not worsening.
There is a noticeable tension in her which seems to be increasing. I can often hear it in the timbre of her voice, see it in the muscles and observe it in her eyes. She will often wring her hands together or stroke her fingers with the opposite hand and then reverse to the other hand’s fingers. These are new behaviors. There are times when tension issues from her body and seems to fill the house. I sometimes find myself absorbing or succumbing to it and notice I too am tense; like it’s contagious and I am infected by it. I have learned I must be alert or I will unconsciously fall under its dominion if unrecognized. A conscious choice must be made to not allow it entrance. Her stress at first seemed paradoxical as if it was contesting death, but my perceptions have changed. I know she is at peace with life and death. I can only surmise it is the natural proclivity of the human body to fight and resist expiration.
As good as yesterday was for Mollie, today she seems to have far less energy and vitality. After showering this morning, she came and sat in her chair and began to scroll through her e mails. Five minutes later she set her computer aside and fell asleep. She slept deeply for over two hours. It was good time for me. I feel fatigued and puny today. The quiet time was beneficial and appreciated.
After awakening the remainder of the afternoon was spent in her chair writing e mails. I remained mostly quiet.
The polarities of life, all life, are illuminated this last month or two with Mollie. One day is filled with excitement and the sunshine of activity while the next is soothingly overcast with the fatigue of the body and its need for rest. Some hours are filled with mirth and wit while some are fraught with pain and mute helplessness. Some moments are enfolded with the closeness of affection and others with the naked distance of solitude. The full range of human sentiments, feelings and emotions is being presented to us through this looking-glass of cancer and decline. But it really is not showing us anything which has not always been there. For me I am recognizing in the activities of my life and mind I have overlooked many of the colorations which life prisms. They’ve always been there. Too often I have failed to see it. In looking over my life I see life which I have often overlooked. I have become alive in Mollie’s dying.
I did some household rearranging today. I have been missing the “space” I usually have in the house, the personal space to be still and quiet. Mollie and I had a talk about it this morning. I acknowledged some resentment I am feeling. As we cleared the air surrounding my thoughts and feelings she too, being sensitive to my states, expressed her worries she was becoming too much of a “burden” and would be required to seek other places to live out her life. It was good to get the discord of my resentment and her worry into the sunlight where it could be warmed and examined. When the resentment and worry were exposed they vanished. They disappeared right back into the nothing they came from. What was left in their place was a way to rearrange some of the furniture to accommodate a minor change in how we move about the house in time. Easy!! These old programs of reactive emotions we carry can lose their power over us simply by expression without blame or judgment and without seeking measures to avoid them. If needed, changes emerge organically without effort after the air is cleared. We discovered that years ago and it still serves us.
Later in the afternoon three of Mollie’s friends stopped by to visit with her. They only stayed about an hour when Mollie told them she was too fatigued to visit with them any longer. It is becoming more difficult for her to sustain the energy it takes to relate. Remaining conscious, not sleeping, and processing words spoken to her or words she speaks can quickly deplete her available energy.
We changed the colostomy bag first thing this morning. We are streamlining the process so it happens with more elegance and ease than previous changes. In the stress of activity Mollie did begin to show evidence of tension in her body and vocal tones. She took some cream medication which was rubbed into the inner wrist and the tension mostly dissipated. Later we talked of the tension which shows up more and more frequently these days. “When I notice you are tense I do not sense there is any fear in it,” I said. “Yes, there is no fear. There is only tension which shows up as tightness in the muscles and shaking.” It interesting how she can show all the signs of high stress and anxiety yet there is no fear present. The body seems to be doing something totally different than what is occurring in her psyche, emotional experience or deep essence. Fear is something I have never sensed or seen in Mollie. Of course, she has been frightened by something like a loud noise. But fear is not part of her makeup. I have known anxious or stressful fear in me and seen it plenty in others. To see signs of bodily stress and anxiety without fear as Mollie demonstrates is an anomaly for me.
Later in the morning for the first time in my life Mollie expressed she had felt fear at something which occurred inside her. I returned after being away for about 2 hours when she related this to me.
“About an hour ago I had an attack of something very strange, I felt very strange. I have never felt anything like it before. There was an energy sensation which began in the abdomen area and spread upward. It spread through the chest, neck and into the head where it began to swirl about. I thought perhaps I was having a stroke or something. I got my pendulum to question what was going on but I could not even form a question for it. It was so strange. I actually felt fear. I was afraid. The attack went on and on so I took some medication and after several minutes it subsided. It is almost gone now but the sensation of its strangeness is still strong in me. I have never felt something like this before. I had the awareness that when you returned home you would find me slumped over in this chair.”
I can only guess her fear is part of the aliveness of dying too.
But through the rest of the day she was gone. Physically she was still here in the house but the Mollie I know was not here. For a few seconds, she would return and speak a sentence or two then—gone again. By gone I mean she is between the veils of sleeping and comatose, probably closer to sleep walking. She has a book which she claims, “Totally captures my attention.” Yet in a page or two of this page-turner she will fall back into slumber. I am concerned for her safety if I am not around. When she is here but not here I feel like I might feel if I was attending a machine to make sure it was functioning properly. My role at these times feels very perfunctory, but my heart is filled with sorrow.
Today is the beginning of the third day in a row of rain. The unusual amount of rain for this late in June is allowing us to keep the house windows and doors open full inviting the freshness of rain washed air to circulate inside. In another form, it’s circulating inside us too as it refreshes the spirit. It is also helping to keep the odors of decomposition at a lower level, at least to the olfactory senses. Although Mollie continues to bleed and discharge a mucus-like substance, the pungency is less noticeable in the house. But it’s still there and constantly redolent. There is no avoiding it anywhere, even away from the home.
We did get out of the house for an hour or two although it was overcast a gray with too poor visibility for a long drive. We had lunch out and purchased some feminine products Mollie needed. Into these short outings Mollie packs a bundle of appreciation and presence. During lunch she told me of a conversation she had with a friend recently who wanted to know “What dimension or dimensions are you in? What are you seeing there as you go through this process?” Mollie’s answer was succinct and reflective. “I’m not interested in those other dimensions anymore. A full life is lived one step at a time. I am here now.” She is present with her life as it is. As she sat in the car to return home she said, “I liked this outing but I’m ready to be back home now.”
She was hungry for dinner but ate about half of what she was served. “I’m sorry, Michael, I like the food and appreciate your efforts but I just cannot eat any more.” We sat and chatted a few minutes enjoying the evening together at the table when she began to belch a little and hold her midsection above the belly. “What is happening, are you in pain?” I asked. “No,” she replied, “Only a little heartburn. I used to be able to eat almost anything and had a robust appetite. But now…? I think it’s time to scrap this body. Every day more of it breaks down.” “I’ve said it before Mollie but I don’t think I can stop saying it. I don’t want you to be in pain so I pray for your release. At the same time, I don’t want you to leave. There is a constant tension in me about this.” “I know” she said, “It’s in me too. I don’t want to go and I’ve mostly had good health all my life so I don’t want this breaking down to last too long.”
Later in the evening we listened to another 30-minute section of Adyashanti’s Resurrecting Jesus program. The last two or three weeks his presentations have been impactful. I’m not surprised to find his development of the course parallels exactly what is happening here with Mollie and me. He quoted a passage which I thought incomplete tonight so after the program I got out the Bible and read the entire passage to Mollie. We talked about it a while as Mollie reclined in her chair. With her eyes closed and the body softening she asked I read The Song of Solomon to her. That chapter is the most beautiful poetry in the entire Bible. It’s a love poem which rivals and often surpasses Rumi, Hafiz or the Sonnets. I read softly to her as she drifted off to a light slumber. What a magnificent way to end a day.
We’ve been enjoying the antics of a pair of Blue Jays all spring as we sit on the front porch. They are a male and female pair who frequent the porch to nosh bits of toasted English muffin or granola pieces we leave for them. They were visitors last summer but when the cold weather arrived my mealtimes retreated inside. They have endured or returned after the toast-less winter of their discontent. Now they are daily guests, or perhaps we are theirs? Should there be no morsels for them to gobble, they will sit on the railing and squawk in their Jay screech while looking with little cocked heads at us. About 2 weeks ago we discovered they have offspring this year. A young Jay, still unable to fly, was fluttering about on the ground trying to decipher the mechanics of flight. His parents, watchful and anxious, encouraged his endeavors. They would feed their youngster with bits they had gleaned from the porch. Two days later we saw him again and he was still unable to get airborne to full flight. He could hop up and gain a few feet of altitude but he was still a grounded bird. Finally, the little guy learned to fly and he then became a regular visitor at our ersatz diner.
Now he is teen age size, only slightly smaller than his mother. (He may be a she, who can tell?) In typical adolescent style, he is attempting to take over the household. As the “territorial genes” begin to flourish in him his behavior is changing. (Or maybe it’s simply the usual hormonal changes of a typical teenager.) But he is claiming our porch and its menu as his own. All other birds, especially his parents, are forbidden entrance. He’ll stand on the porch threatening his parents when they come to eat. He fluffs up his body, flutters his wings very quickly and chirps an unmistakable warning of “This is my territory, stay away.” The female is usually intimidated and will back away. The male is not bluffed so easily. Nor does he pay much attention to his progeny. No matter how much chattering or energetic gyrations the youngster makes, the father just looks at him as if to say, “OK son, keep it up, I remember the days. But you’re not fooling me.”
As Mollie and I watch these antics we know we are living in the great circle of life where it becomes unnecessary to make distinctions between us and the birds. They are demonstrating aspects of the dynamism of all existence. Birth, growing and dying are some of its movements. We are grateful to have the privilege to travel with each other in the circle of life with the birds and all creatures.
Like the little bird when we first discovered it, Mollie is now fluttering in attempts to engage in a different type of flight. Like the flightless Jay she is in a very vulnerable situation. She is caught between the worlds of grounded and airborne, fully belonging to neither. As she flutters back and forth it causes confusion and a sense of estrangement. She received some e mails today whereby friends were saying they were experiencing and relating to Mollie in other dimension where she was teaching them things as her perfected self. “I’ve no idea what they are talking about” she said. “I’m only here and even then, I’ve no idea what is happening. What are they talking about? Are they making all this up?” In Mollie’s confusion she cannot handle, nor should she be requested to digest information like this. “Michael, I need your groundedness and stability. I don’t know what’s happening to me.” There is panic and the abyss of existential uncertainty present. I just sit next to her knowing that quiet solidity in wordless love is the best medicine. I sit like that a lot these days.
I don’t know what’s happening either. No clue. I often do not have any notion of what to do and it’s accompanied by a panicky feeling in me. I have thoughts like I want to call a doctor or someone. But the feeling and thoughts last only a millisecond. Grace takes over and I know what to do. Almost always it’s nothing except be still. The best I can be, the only thing I can be is a compassionate presence.
Yesterday was probably the worst day for Mollie so far. The pain was severe but the confusion was frenetic. At one point, she said to me while holding up her thumb and forefinger “I’m this close to being full crazy.” There was less than a half an inch between the two digits. In the evening, we flipped on a Mozart opera. “I need any type of distraction so the mind will not go to the pain and confusion” she told me. As we watched she could not even follow the plot. She kept asking me questions about what was happening in the opera. I’d look into her eyes periodically and find them open with a vacant stare. But I could tell the activity on the screen was distracting her by keeping her mind occupied with the staging, music, costumes and choreography. But it was making no sense to her. Ordinarily we watch these performances until intermission and then retire and view the rest another day. Not tonight. She stared vacantly through the entire recording. She was still wide awake and although exhausted was not ready for bed an hour and a half past her normal time.
This morning when she emerged from her bedroom she had recovered somewhat from yesterday’s episodes. Her pain level had diminished a bit. Best of all, the intense confusion or bewilderment seems to have abated. She increased her morning dose of medication by a third.
Yesterday her daughter Carrie called and will come here for the weekend. This gives me a chance for a break. I called Ashland and purchased tickets for 4 plays and made motel reservations. I shall leave Friday morning and return late Sunday night. It will be a fast trip; I’d better seize the opportunity, the ‘carpe diem’ delivered by the Cascade. Meanwhile Carrie and her mother will have some one on one time together. Once again Grace is providing in unexpected forms. Calling the theatre box office for tickets I was able to acquire tickets for the plays I wanted to see. (Frequently sold out on weekends this time of year.) With no other visitors scheduled with Mollie, Carrie will be able to have the alone time with her mother she has been wanting and I will get a jaunt to Ashland I thought unlikely this summer. It all happened without effort, difficulty or planning.
And this morning Miss Mollie said, “I’m so excited you get to go see those plays. I can hardly wait for you to get back and tell me all about them.” How much like her it is…. excited for another despite her trials.
We had a brief outing this afternoon of an hour or so. The first stop was her bank to take care of some business and then to Ikedas’ fruit stand. Mostly she wandered around there appreciating and delighted by the fresh produce and unique deli-type items. Fresh hot apricot pie was available but clearly did not pique her palate. “What a waste of good apricots” she told me, “I like pie but fresh apricots are an elixir, not to be put in pie.” I wonder; do gustatory opinions die more slowly than the body? After leaving we went for another drive exploring some countryside neither of us had seen for a while. What splendor these drives are with her. They are more precious moments of life.
We watched the second half of La Clemenzia di Tito again which we had seen the previous evening. This night she was not in the state of numbness or confusion she had been before and her reaction to it was enthusiastic and animated. “I loved it! That woman playing the lead was a fantastic singer and actress.” We shared a few more comments about it before marched off to bed with her computer to seek more information about Mozart’s infrequently performed opera.
With the reduction in her pain meds Mollie had a much better day yesterday. Awakening this morning she again appeared in better spirits and vitality. Yet she spent a lot of time in the bathroom before emerging for the day. “I kept needing to clean myself up and change my pads as the urine seems to run out of me like a stream. I cannot stop it. I get all clean and ready to come out and more urine begins to flow.” It does appear the incontinence is getting more pronounced. The doctors indicated early in the process a catheter will probably be necessary. Mollie dislikes them as they are intrusive and uncomfortable for her. Twice she has been outfitted with one and twice she has removed them.
I left home this morning for Ashland feeling hesitant to leave Mollie. She spoke with Carrie this a.m. She should be here sometime around noon. Before that Laraine was to take Mollie to her acupuncture appointment at 11. I felt some reluctance to leave, partly because the temperature is forecast to soar for the next few days. I would like to be here and try to keep Mollie as cool and comfortable as possible. Maybe that’s a needless concern. She knows perfectly well how to turn on and adjust the air conditioner. That’s about all which can be done. Here is my old friend Dilemma with my desire and need of a break and my desire to spend time with Mollie trying to make her as comfortable as possible. Trapped by mind once again!
June 29…In Ashland
I had a conversation with Mollie this morning on the phone. She sounded energetic and her voice had the familiar lilt of affection and vitality. She reported her acupuncture visit yesterday produced some beneficial results. This practitioner works with several people at the same time in a large room with comfortable recliner chairs. “I was a bit skeptical at first but when she began to insert the needles while I was reclined I could feel tension and stuck energy draining from the body immediately. Shortly I went into a deep rest, silence. I stayed in that state for I don’t know how long but periodically I felt her change needles and positions. Finally, I opened my eyes just like she said I would and it was finished. Today I am aware of less stress in the body.” She declared another visit may be in the cards for her soon.
She also related how Carrie and she spent some time yesterday purchasing and trying out products to contain the urinary incontinence. Her daughter is the perfect person to assist and educate her with this. She worked in a nursing facility for several years. In this employment, she was also a caregiver for many who were dying and present with some at the moment of their death. This is partly the reason I have such confidence in Carrie. She knows and has far more experience caregiving than me. Mostly, I know she loves Mollie as much as I do. Here the same love is moving two different people toward Mollie in a singular but indefinite purpose.
The Cascade of Grace has delivered Carrie to help Mollie with her experience and expertise and sent me on a weekend hiatus. I’m gob-smacked and grateful for what it sends.
I dialed up Mollie after a walk in Lithia Park this morning. She shared with me how much Carrie is feeling overwhelmed by her situations of her beloved mother’s passing and some very serious legal troubles she faces. “She thinks I am the only one who supports and loves her” Mollie told me, “When I die there will be no one left for her. I feel so heartbroken about what’s happening to her in her life.” I said to Mollie, “I think the whole business is up in our lives where our thoughts and reactions to what we think of as unfair is being demonstrated to us at this time. But before Carrie leaves today please let her know that no matter what happens she will always have my support and love. She has had a raw deal ever since I’ve known her. Let her know she not only has my support but also my admiration of her courage at how she faces what life is throwing at her.”
Reflecting on the situations of both Carrie and Mollie it’s not much of a stretch to see “unfairness” in both circumstances. Mollie’s cancer is devastating her body with a slow excruciating rampage. Other people often are gifted with a different type of death whereby there is little pain and some quality time right up to death. My mother had such a process so I have been privy to that scenario also. But it’s easy to conceptualize “Unfair” and then dwell in its review. Doing so today I overlooked the very virtue embedded in my reaction to “unfair.” Driving home from Ashland I had the opportunity to see that. What I perceive as “unfair” is only my reaction to what is. That perception solidifies another identity, another false self. There is a certain pleasurable ‘charge’ accompanying the perceived “unfairness” and its ensuing identity. It’s not the situation which creates the false self; it’s my reaction, my conditioned reaction, to experience it as “unfair.” In this illusion, there is ‘me’ and then there is the unfairness of life or the world. The true Virtue is not in the circumstances of life, but in the mental and emotional opinions I have of those events. The Virtue is the recognition of the identity of me experiencing what I think is unfair, whether it’s happening to me or others. Finally, the real Virtue is falling into the abyss and horror of unfairness to discover its Truth.
That does not change the challenging circumstances both find themselves in. It does not mitigate the suffering, dismay or the despair both could face. It does not make my life or theirs any less difficult. Truth via a Virtue of “Unfairness” is not a candied curative trying to sweeten life. It can be very bitter.
Even so, the heartbreak and pain I feel for both of these women in their different circumstances is not diminished one dram by recognizing my false identity. Nor is it reduced by the discovery of the True nature of “Unfair.” Quite the opposite actually, it’s intensified. My idea of “unfairness” actually insulated me from really empathizing with some aspects of their plights.
Returning home from Ashland late at night I was cast immediately back into the role of Mollie’s caretaker and friend. Once again, she reflected back to me any idea I had of her thinking life was unfair is simply my incorrect assumption. She has no identity conceiving life being unfair to her. What a teacher! Sometimes her most eloquent lectures are wordless. Sometimes she is hundreds of miles away during her most effective presentations.
Mollie’s urinary incontinence is more prevalent. She told me this morning “I’ve got to do something about it.” I made some phone calls and started the process to have a catheter installed. We are both under the impression one can be fixed surgically to the bottom of the bladder draining into an external bag. It does now appear the urethra has probably been consumed by the cancer. The constant draining now cannot be contained by absorption. “I tried on some types of adult Pampers but I felt like I was walking around with my whole pelvic girdle sloshing about in a swamp.” There is also more desiccated tissue being excreted along with the urine. With it the odors of decomposition are becoming stronger and sharper. The house now cannot be cleared of their pervasiveness. Literally tissue is rotting inside her like tissue rots on a cadaver. Even if the catheter can contain her urine it will not be able to enclose any of the tissue dissolutions. We will have to live with that until…?
Mollie was lying on her bed this morning as I first came out of my bedroom. Usually she sleeps or stays in her room until much later. As I walked by her open door she said. “I want you to look at something. There has been excessive bleeding, lots more than ever before. Sitting on the toilet this morning peeing there was some blood but not much more than usual. When I stood up it started to gush out. It ran and ran.” There was concern or bewilderment written on her face. Three large clots almost the size of golf balls had exuded from inside her abdomen. The cloths she uses to clean herself also contained much more blood than usual.
Heidi came by about noon so we brought this to her attention. She did not seem concerned about it but she did tell us it is not unexpected. Our conversation then went in other directions focusing mostly on medications. Several minutes later I had an opportunity to speak with Heidi alone. “I see a possibility this bleeding could turn into a hemorrhage and suddenly Mollie bleeds to death” I said. “Is this a possibility? Does it happen?” Heidi responded in the affirmative. “It’s a very real possibility and it happens with some frequency.” She then gave me some instructions on how to minimize the messiness and odors should Mollie bleed to death hemorrhaging. If this happens not much can be done for her.
The odors have become stronger and more odious since I returned from Ashland. I do not know what that signifies, if anything. I do know washing her clothes now the odors will not come out completely. Hot water, vinegar, fabric softener and essential oils will not make them odor free. Even the washing machine and dryer now hold these scents hours after their use.
The confirmed notion that Mollie could bleed to death had been with me in thoughts off and on all day. I knew I needed to talk to her of it. After dinner, I brought it up telling her Heidi had affirmed my suspicions about a potential hemorrhage. “I know it is possible” Mollie said. “If it happens please don’t let anyone do anything to revive me. I want no transfusions or adding of blood, nothing.” “I have no intention of that” I answered, “If you are unconscious I will just stay there with you.” “Good, just be with me and hold my hand or something.” “I will, we have the POLST order” I said. “No one should have any doubts you do not want to be revived. I spoke with Heidi this morning about the potential death and she gave me some things I could do to minimize the blood mess and odors.”
Continuing I said, “Since we are talking of this I have a question for you. I have seen what I thought of as fear on your face lately when you have been in those low points. Have you felt fear about dying recently?” Mollie took a breath and said “No, not fear, but I have lately experienced some anger about dying. I’ve given up so much these past months. First it was moving to South America, then it was Mt. Shasta and now all I have are short hours, moments really, where I can really feel I have even a little bit of choice. So yes, I have been angry, not about dying but about all the aspirations I let go of. I will never get to South America and even a visit to Shasta seems improbable.” I told her of an article I had read recently about several young men in WW11 who were bomber pilots and had life expectancy of 5 missions or less. Chances of them surviving a month or two were slim. The article said these men in their 20’s, were not afraid of dying but they were angry about missing the rest of their lives. “I can imagine being in your situation” I said, “Whether I was 25 or 75 I too might feel angry about missing the rest of my life.” Mollie replied; “Yes, I too feel that despite these last month’s where I feel like I have an appreciation of the moment which has become sublime. The food tonight, conversations with you, watching the flowers and the Blue Jays; all has become an exquisite experience through this human body. I do feel anger and sadness that it will vanish. That sadness however does not diminish any of the joy. All of this has made me more present and in the now more than I have ever been. But to say I want to die would be a travesty. I don’t want to go. I want to live”
Mollie has been semi-sleeping frequently. The episodes of her drifting off have escalated these last two days. This morning after arising and sipping a cup of tea she fell back to slumber even though she had been awake, only a short while. Sitting with her I notice how her entire continence changes, she begins to have the look of a cadaver. “Do I really look like someone dying or dead when I sleep?” She does. Her body is eroding away. Her arms and shoulder girdle are becoming thin and what muscles remain are quickly losing tone and suppleness. Her skin pallor is waning and daily loses more of its vibrancy and luster. Then there is an acceleration of the edema in the legs with the onset of this recent hot weather. When she is in these nap/drifting state the body relaxes and these features become more noticeable.
Mollie has told me when she is in these drifting states she is experiencing being in a state of consciousness different from her ordinary or a common sleep one. It’s different than even deep meditation. She is wondering if that state is unique to the dying experience. She asked me as she awakened from this morning’s nap. “When I’m asleep and in a different state of exploring consciousness, ask me a question like ‘How much time do I have left?’ See what kind of answer I might have which is not available in ordinary consciousness.” I responded by telling her I can see she is in a state different than the ordinary. “But I’m not sure I want to ask that type of question because it would be in a different order of awareness. That question is of ordinary reality and asking it when you are in a different order might shock you back to this reality like if I suddenly awakened you handing you the phone saying, “Mollie you have a phone call.” It might be like an alarm clock waking suddenly from a deep sleep. She affirmed this might be the case. “I do feel and experience a higher mind sense at times when I seem to be drifting. It’s not my mind like I have an intelligent or rational mind and a less rational one we call egoic mind. This higher mind does not belong to me alone.”
It’s Independence Day and I want to make a pun about Mollie being in-Depends today which keeps her dependent on quick access to her bathroom and reams of absorbent materials. In this respect, she is less independent than she has ever been in her life, at least adult life. In years past I have often teased Mollie about a sub-personality she often exhibited called the “Freedom Fighter.” This aspect of her had the visual imagery of a battered and bandaged Revolutionary War soldier marching carrying a flag and playing a fife. She had a strong proclivity to protect or defend what she called her right to live her life free of programmed conventions along with the freedom to choose how she expresses herself. With her awakening that sub-personality melted back into the real Freedom which she is. On this Independence Day, Mollie is dependent on many things, including me, which is a novel waterline in the tides of her life. In letting go of some of her previous freedoms while embracing her dependency, she is still living the Freedom she is.
That goes for me too. The freedoms I perceive to have surrendered these last two months have melted into the Truth. There has been a great relaxation as I have erased my personal definitions of freedom. Like Mollie, I see choice or choosing much less important than I did a few months ago.
In this Freedom Mollie’s body is losing more muscle, strength and attractiveness. She reported as she came out of her bathroom after showering “I looked at myself in the mirror and was appalled at what I saw. I look like I’d come through the Holocaust. I was shocked, stunned. My arms are looking emaciated and my skin is sagging, pale and ashen.” While those descriptions are exaggerated, they are not entirely hyperbole. I cannot tell her she looks wonderful and attractive, she no longer does. I would be speaking untrue if I told her otherwise. The beauty I see shines through and it is the beauty which has always been there and always will be. That’s what I see when I look at her. I live there. She gives me the compliment of hanging out there with me. The body goes. Love stays. Love only changes form.
But that does not mean she is totally at peace with her deterioration. “I can’t believe what I see this body is becoming. I know it’s all image but I still cannot like what I see. I actually dislike it.” She also dislikes the pain and difficulties she is suffering. “This is exactly the type of death I’d hoped to avoid. I did not want a long painful slide into death. I was afraid of it so I had hoped for a more elegant or quick death. But I guess I’m getting what I most wanted to avoid.”
We watched an old movie last evening. Born of the Fourth of July sounded like an appropriate film for Independence Day. Mollie wanted to spend time relaxing with some distraction. Distraction hardly seems to be a description fitting of this stunning picture. The suffering of some wounded Vietnam soldiers returning home struck a dissonant chord of empathy in our hearts. More to the point, being here these months with Mollie has shortened the distance between her process and the suffering of all sentient beings. The movie presented a theme of these returning soldiers were not given the physical or emotional care and resources they needed. Much of their suffering was unnecessary or could have been alleviated at least a little with means available at the time. But it was not given to them. It was especially heartbreaking to see these men ignored and largely bereft of attention and compassion. Although Mollie has excellent medical care now and psychological help if needed, the agonies her body is enduring opens our hearts more completely to the plight and pain of these characters and all who suffer especially when remedies exist but are not afforded or given to them. The movie had a stunning effect on both of us. Neither of us could contain tears. A day later the impact hangs in our hearts like a cold fog of anger and anguish.
I cannot help but think of the many people in this world dying of cancer at this moment needing the type of care available to Mollie but live, and die, with its absence. How fortunate we are! How unfortunate that care could be available to many more but they are ignored or disregarded.
Like a leaky faucet, she has been draining urine almost constantly. Last night she attempted to sleep on a plastic bedpan! At 4am she finally discarded the hard-edged pan in favor or more absorbent (and soft) padding from adult diapers. She got very little sleep.
As the urine flows fluently she uses much material which then must be discarded as trash. Several plastic trash bags now make the ordinary household garbage seem miniscule. With the leakage Mollie must attend to the wet (wet not damp) pads every hour. This attention makes any relaxation or sleep time short. She is bewildered at its volume, “Where’s all this coming from?” I found a moment alone with Heidi to discuss the leakage and edema. I was told it is quite possible both kidneys are losing some of their function. We already know one of them is diminished by cancer lesions. Normally a human can function on one kidney for years. But two compromised…? In this urinary leakage, there is also a frequent discharge of “bits of tissue.” The cancer may be devouring more. With it comes increased pain and soreness of the vaginal/rectal open wound. It has not healed one bit the last weeks. It’s not likely to improve as it spends its days submerged in the clammy dankness of urine soaked padding. Arriving with the tissue discharges are more odors of decay and disintegration. They smell stronger on hot days!
Today the temperature has abated we are still in the near apogee of solstice summer sunshine and its heat. The putrefaction or rotting in Mollie seems to have increased as tissue dissolution accelerates along with its ripening odors precipitated by the warming. She is embarrassed and apologetic for this condition. Yet there is nothing to be done except accept this is the way things are. She felt free enough of pain yesterday to go out to lunch. She was delighted to be out and ate more than half a large order of lasagna. Yet finishing the meal a discharge of tissue and odor occurred. In deference to the other patrons we left the restaurant quickly and returned home.
The pain of the vaginal/rectal sore has become “excoriating,” her word for it. She winces and moans frequently and now sits on one side or the other of her pelvis, often with the rocking motion. Sitting upright is intolerable for her. For the first time in several weeks yesterday she took some morphine. Its effect was minimal. The same can be said for a dosage today. The surges of pain are now frequent and the times of relief from them short. With this increased pain and interior decomposition, she ages physically and her facial and body language reflects exhaustion.
I find myself with an unfamiliar sense and feeling experience. There is a cold emptiness and fatiguing tension which I cannot define as either physical or emotional. This tension is sourced somewhere between effort and no effort. There’s no separation between them. There are efforts made by me and there are times of effortless waiting. I recognize I spend a good deal of energy attempting to be accepting of the odors. I must work at it. It does not come naturally for me. As this deterioration continues I am more vigilant about sanitation in the house, especially her bathroom and the contaminated material which must be discarded properly. Leaving home for an hour or two is more difficult now. Or perhaps I’m only more reluctant to leave. It could be a symptom of the “tension.” Whether this reluctance is wisdom, folly or something else seems unimportant to me. I’m only here remaining watchful awaiting the next action which needs to be taken. Unlike Ferlinghetti’s poem I’m not “Constantly awaiting the rebirth of wonder.” I am waiting, but I’m waiting in wonder.
We did get out for a morning wheel around the park lake and feeding of our waterbird buddies. It has been about 10 days since we last were there. The gaggles of baby geese have matured into adult size and featherings making it difficult distinguishing the youngsters from their parents. “I so love being here. It’s peaceful and beautiful and feeds my heart” said Mollie. We even found her some ripe wild blackberries for her to savor. With the constant dry mouth accompanying the pain medications she remarked of the succulent berries “They are so moistening and refreshing in the mouth.”
Arriving back home in the car she remarked how her oncologist warned her months ago cervical cancer rots the cavity and environs which hold the female reproductive organs. “I went on line and tried to find out what stage I’m in with this cancer. But I could not find anything definitive.”
I responded I had conversations with the hospice nurses and they are reluctant to say. “I think this progression follows no particular patterns. If both of your kidneys are failing then it would be different from another with functioning kidneys. It’s probably hard to say or make assessments” I said. “I think you’re right” she said. “If my kidneys fail then it will be a fairly quick death.”
Mollie had been reading on the porch when she came inside and said to me, “I don’t think I have much time left. I sense it’s getting closer.”
There may be some advantage to having some knowledge of how much time Mollie has remaining in this life. If there is an advantage I don’t think it would be much use to me. There have been times recently I thought I would like to make some travel plans and attend events later. But those were only thoughts. I am very sure that when Mollie dies any aspirations I may have in this moment would change. Now, any plans would be nothing more than imaginative futures or fancy. I will know what it will be like and what comes next for me when Mollie dies; when Mollie dies.
I wonder. There are many physical signs, her time is getting short. There are mental and emotional signs as well. There are signs of completion with people, events and circumstances. And there is Peace enfolding every instant which I cannot understand.
She received a lovely card in the post this morning from our friend Kaye who frequently mails her. Kaye’s card was a few words telling Mollie she is visiting old friends and family in Minnesota. There was a short anecdote about paddling around a lake and befriending some waterfowl. It was elegantly simple, but heartfelt. “I like it when people send me cards or e mails sharing with me something that’s happening in their lives. I don’t want to hear about my dying or how sorry they are about it.” It can be easy to forget Mollie is not dying; she is alive in her aliveness of life.
In the evening Mollie wanted a distraction to take the mind from focusing on the constant and ragged pain of the open sore. We watched a PBS documentary about hummingbirds I had recorded. We were fascinated with the diversity and adaptability of the little hummers. We discovered they fit into unique pockets of the ecosystems they inhabit. It was a delightful and educational show while providing the coveted amusement for Mollie. It was informative and the photography was beautiful capturing these incredible little creatures buzzing about their natural world. When it was over Mollie said “What wonderful and enchanting planet we live on with its beauty and diversity. It’s mind boggling there is so much magnificence and horror in the world at the same time. And to think we have technologies available like this one tonight which shows us some of our world we otherwise would not be able to experience. We are fortunate to live in these times where the wonders of earth are so accessible.” She turned in her chair towards me and continued “It’s a beautiful and wonderful place. I am not happy about leaving it.”
Interlude–Breakfasting with Blue Jays
The young Jay is fast maturing into an aggressive and noisy adult. His parents are now scarce when food is scattered about the deck. Whenever they show up the youngster continues to vibrate his wings quickly while puffing his feathers attempting to make himself seem larger. He is banishing his parents. Yet he has no fear of me or Mollie. His antics have entertained Mollie often as she sits on the deck reading, eating or napping. While she sits at the table snacking or sipping her tea or water, the young bird will hop about her feet or lite upon an unoccupied chair watching her with avian curiosity. One morning Mollie had fixed herself a couple of frozen blueberry waffles for breakfast. Dousing them with a little maple syrup and garnish of a few fresh strawberries, she enjoyed them outside on the deck. The bird watched from a railing perch until flying a few feet to land on the table. Staring at Mollie as she forked bites into her mouth his curiosity or aggressiveness took over and he hopped upon her plate and began helping himself to bits of her breakfast. Mollie could only chuckle and admire the bird’s bold enterprise and cleverness. “It had a hard time getting traction on the glass plate. The Jay kept slipping as it moved to pick up another bite.” These birds have given us much distraction, entertainment and joy as they obscure the line between human and avian.
Had Mollie not been ill, we may have missed this sublime slice of living. Dying is not entirely about surrender or letting go. It demonstrates the wholeness of the human experience showing us all the revulsions and exaltations. Life is both. Sometimes it gives us the opportunity to pay attention and notice something which has always been there but hasn’t been seen before.
The pain of the open sore grows more intense. The last few days she has increased her use of the “stop gap” medications with the hope they will reduce some of the constant flaming pain. “It feels like an acid bath. It’s gone beyond the sitting on razor blades description. Nothing I do seems to give me much relief.” She sits on one side or the other of her hips now or spends much time standing. Reading she will often place the material on a table and stand with her lower arms or hands adjacent to the book while rocking back and forth or side to side. Turning a page offers a challenge.
Frequently there are moaning sounds and sometimes sharp cries of sudden painful jolts. Surges happen unpredictably at any time or in any body position.
She can become frantic in an instant sometimes. She will pace, rub her hands together and yelp in pain. The body is exhibiting all the physical signs of extreme stress. These episodes are most likely after changing the material in her underwear or showering. They drain her energy and push her to the edge of tolerance. I have been surprised she has not yet passed out from these flares. I can do nothing to help her. Even the morphine offers little relief. We have some anti-stress (tranquilizer) cream which is rubbed into the wrists which can help a little if applied before these onsets. It is best used about 15 minutes before the surges. But these frantic moments mostly erupt spontaneously without warning.
A strange unfamiliar aura was about me and in the house as I awoke this morning. Mollie was sleeping later than usual as I sipped morning coffee and sat in a state between wanting and not wanting. In my mind, I desired a trip to the gym and at the same time I did not want to go. I wanted to make a phone call I often make in the morning and I did not want to speak with anyone. Body sensations were following the mind. There was a tactile and kinesthetic sensation of relaxed tautness. Mollie continued to sleep. Two hours past her normal time to arise, I began to have sensations that she had died. I continued to be in the wanting/not wanting state as I thought about the possibility of her being dead; having died in her sleep. I opened her door quietly and saw her covered up completely with a quilt and could detect no breathing or movement. I waited another half hour to check her out completely. In case she had died I did not want to inform anyone to assure no attempts of revival would be made. I remained in that state of wanting/not wanting; wanting her and my ordeal to be over and not wanting her to be gone. When I did enter the bedroom, and pull back the comforter, Mollie’s eyes opened with a startling look. I woke her up suddenly. Even later, the wanting/not wanting state continued and it was not about anything specific. It is a state of consciousness unique for me. I often live in want or not want but not in the paradox of both at the same time.
Mollie had a good day. The pain levels were tolerable for the most part and we had an adventure out to buy some bouquets of flowers to adorn the house. We wound up spending much more money than we intended but Mollie had a great time trimming and arraigning them into displays. Our home today looks a bit like a floral shop!
Some of the roses were contributed by two people I have never met. Thank you, friends.
Mollie’s pain level is higher today than yesterday. A hospice nurse came by to check in. (Heidi is on vacation.) We three discussed the pain in the open sore and the potential catheterization. We have been trying to get a referral from the primary physician to see a urologist to assess and possibly install a supra-pubic catheter. This attempt has been going on now for over a week with no movements so far. It’s frustrating. We cannot talk to the urologist or make an appointment for consultation until the referral is in place. Catch 22? The nurse did enlighten us about the cancer progression. She surmised the discharges are from the activities of the cancer as it eats at the body. This activity creates fluids which then must follow the law of gravity; hence the discharges through the vaginal cavity. Some of the pain in the open wound may be from the toxins in the produced fluids. A catheter would not decrease or capture the discharges. They would continue to stream through the sore while the pain would probably continue about the current level. There would be a positive outcome from the catheter in that less clean up and pad changing would free up some of Mollie’s time and energy; much like the colostomy has made her life less complicated and easier.
In the evening Mollie needed distractions. The pain flared, subsided then flared again. We tried to watch some mindless TV stuff but Mollie fell into drifting semi consciousness almost immediately. Even during dinner, the drifting had begun. I got up from the table and returned a minute later. Startled out of her drifting she looked at me and said “I was looking into two eyes, just two eyes. Then I realized they were your eyes.” Most of the time in these driftings she is doing something significant. Returning to normal waking consciousness sometimes she knows what the importance is and sometimes not.
This evening she was in and out of normal consciousness from before dinner until about 8:30 when she announced she was not feeling well and made her way to bed. She was cold and shaking. Her finger tips and toes were hued in bloodless white. I hugged her and felt her body vibrating with something indescribable, not cold, but not quite not fear either. I wondered if she would live through the night. As she closed her bedroom door I felt a cold and icy emptiness in my soul, like a crevice in a lonely windy glacier.
I was awake most of the night last night, listening for Mollie’s excursions to the bathroom. It bothered me I did not hear her. Usually I hear her and take some comfort knowing she is OK. If she can take care of her bathroom needs I know all is well for now. Not hearing her was an alert. I did go in and out of napping a little but by 3:30 I was wide awake, although resting, listening for her.
Mollie seemed recovered a bit from her previous evening when she awakened. I relaxed into knowing all is well again, for now. We journeyed off a few hours later to Trader Joes. It was mostly and outing for Mollie. She drifted in her semi-sleep state again in the car for the ride both directions. In the store, she used a grocery cart for support as she selected a few food items.
Yesterday Mollie received a new pain medication which is designed for nerve ending pain. It is frequently used on burn victims where the first few layers of skin, which contain many nerve ganglia, have been seared. Thinking the raw soreness of the vaginal cavity may be surface lesions or cut like lacerations, this medicine may relieve some of the searing pain. (We cannot be certain they are cuts or abrasions as they are too far into the vaginal cavity clear viewing.) She took a dose of the medication this morning before we left on our trek and her pain dropped to a tolerable level. This gives us optimism these flare up can be reduced in intensity. The downside is they seem to intoxicate. That may account for her ‘drifting’ car ride today.
Through the years I have known Mollie she has the least amount of self-talk or ‘monkey mind’ of anyone I know. Peace envelops her. Never has she been one needing distractions from challenges in her life or from old personal baggage or issues. She has always been willing to face whatever emotions or memories arise and remain in that enveloping peace. She has never moved away from the emotional discomfort of personal mistakes or unworkable beliefs. Instead, in that peace she welcomes anything which may cause the reactive response of judgment, impatience or discomfort. She is unique in that ability to live in peace with anything. She has needed no distractions to avoid or suppress anything which may jolt her sensibilities.
But the pain she now endures causes her to seek mental distractions. I’ve written of her reading, Netflix series, conversations and such which are all intentional maneuvers to avoid the mind dwelling on physical pain. Unlike emotional or mental discomforts where she was able to be in quiet acceptance, the pains she endures now need the noise of mental refocusing. There is no sitting still and quiet with the pain like she is capable and willing to do with any other arisings.
Observing her seeking refuge from the onslaughts of physical agonies I have a new respect for the power the body can have over the mind. In the medical world, we know the mind’s attitude is an important ingredient in healing and wellness. The mind, or our beliefs, effect what we see and do. In Mollie’s experience, and I suppose all who are experience intense physical pain, I see how the body can overwhelm thoughts of the mind.
I see an inherent paradox. Despite a relentless quest for distraction, Mollie never loses awareness of the essence of her true nature. The anguishes of her body all occur in the peace and peacefulness of who she truly is. The human and the spirit are realized in a nuptial consummation of pain and peace in the matrimonial sacrament of living fully. Through her sufferings exudes the redemptive essence of peace and pain inviting all into the holiness of our humanity. I would never have guessed such anguish could be a virtue.
It’s all love really. Sometimes we just don’t see it.
Yesterday was a day of minor pain for Mollie. Whatever causes her to sleep or be drifting frequently did not elicit the response today. She stayed awake and present through most of the day. I try to find patterns of food or medication intakes which may cause this drifting/sleeping but so far have been unable to detect any. It is probably a useless quest on my part. We know a disconnecting from life occurs in the dying process. It’s evident she is doing something I cannot know when she drops into those states.
My sister Mary stopped by for a visit yesterday. Mollie was delighted to see and converse with her for about an hour. Mollie has known her since shortly after she met me. There is, and has been, a solid family connection between the three of us.
The hospice nurse was here this morning and informed us the process to install a catheter for Mollie is now in place. I called the urologist’s office this afternoon and was informed all of the ducks still are not in line. This has been a frustrating process for us. So far, it has taken us over ten days to get to the place where we can schedule and we are still not there. The process is a bureaucratic quagmire. It’s not a simple matter of the doctor’s availability. Her primary physician must make a referral to the urologist which cannot be done until certain paperwork protocols are in approved by Medicare or insurance companies. Then once the urologist has the paperwork another process must be completed by the same Medicare and insurances. Then hospice must complete protocols and paperwork. All this must be coordinated and finished before and appointment can be scheduled! I have empathy for the doctors and medical professionals as their skills are hampered by sluggish imperatives which are rooted in the distribution of monies. Originally, I offered to write a check to skip all this nonsense. “I will pay you whatever it costs” I said. “No, we still must go through the process, the doctor gets paid, the hospital gets paid, the etcetera etcetera… gets paid and it must be done this way. We cannot change it.” As darkness falls on this Friday evening the weekend absence of doctors portends, there has been no appointment made as promised. OMG, Catch 22 is learning to clone itself!
More surrendering beckons. It’s easier for me to surrender to the inevitable than the inequitable.
This morning Mollie chose the activities saying she wanted to go to a book store. After preparing herself to minimize leakage and odors we sojourned off on another outing for her. Once again she was able to find several books which may keep her attention focused off her discomfort. Groceries were needed and I asked her if she was up for the trip. “Yes I am. Let’s go” she said. As we walked around the store (Mollie leaning on a cart), she began to fatigue. “This is not good” she said, “I am so weak and lose strength too quickly.” But she managed. Instead of going straight home we went for another drive. Driving I try to avoid bumps and make turns as smooth as possible because rectal area pain is exacerbated riding in the car. Despite this heightened pain her appreciation of all she is viewing, the trees, flowers, grasses and water bodies, is experienced with ecstatic wonderment. We cruised for about half an hour or more passing some property she lived on about 20 years ago. Although the area was familiar to her she remarked. “It looks so different. I even have a sense I’m lost. I could be in another country.” She was having a wonderful time enjoying everything. Arriving home, she asked, “How long have we been gone?” “Just under two hours.” “Wow, I feel as if we have been touring for a full day. I’ve had such a delightful time. It’s idyllic. I am amazed. We crammed a lot into two hours. Once again, I see how much beauty and wonder can be packed into such a short period of time.”
Of course, all moments of our lives are precious. As Mollie has been enduring this dying process her appreciation of each second has flourished and proliferated. How blessed I am to be in her presence and in the same car.
What a strange experience dying is, both for the person departing and for those around them. I have written there are times when I thought Mollie might live only a few more hours. There are other times when I believe she may have several months left. I search the literature available finding no position she inhabits in the syllabus of deterioration or longevity. Today the edema has spread up the legs, both legs, all the way to the pelvis. They are swollen to almost twice their normal. She has difficulty walking. The cane has been re-employed for ambling about the house. In 24 hours all this could be, and has been, different. Her pain levels are moderated, mostly successfully, with her medications but her urinary episodes are increasing. They often increase her pain. She spends more time and energy cleaning and diapering. Some of her torso skin now pales, tending toward translucence. Her upper body shows much weight loss. Yet her appetite is good. She eats more than me. I’ve taken to purchasing only the highest quality food I can find. Her vegetarian past has transformed into a voracious carnivore. Perhaps her body is calling for more protein. Filet Mignon, fresh King Salmon, local seasonal fruits and vegetables (preferably via Farmers Market) are the prevailing table fare. And a lot of it! Heaps! Her digestive and excretory systems are functioning well. (Thank God for the colostomy. Without it her pain would be beyond agony.) Her face narrows more each day. Her eyes see well but sink further back into the skull sockets. I’m curious and fascinated of all this but there is only one testimony I can record of the panoply: I’m bewildered.
Neither one of us asks or wishes it would be different. “I’m so grateful to be here and to have you doing this for me” Mollie said. “I cannot imagine what it would be like otherwise. I cannot even let myself think about what would happen to me if you weren’t able to do this.” “I cannot imagine not doing it” I replied. “I cannot conceive of any other place for you, or me, to be other than right here right now.” We are both aware there is something beyond our comprehension orchestrating the melodies of what appears to be this Requiem. I’d like to call it Love. Gratitude feels closer. Whatever it is for me it’s been grooming me my whole life for this. Whatever it is for Mollie, it has ripened the fruits of her Fullness. Maybe it’s just Life animating itself.
Our most frequently spoken words are: Thank You.
Did not write anything here yesterday. Was it in celebration of Bastille Day? I hope so. All people should be free of their self-imposed prisons.
Speaking of prisons, our friend Kaye stopped by for a visit yesterday. Kaye had been with the Gangaji Prison Program a few years ago. Connecting with her again reminded me of the power of Satsang with these incarcerated men.
She was questioning Mollie about her experiences with dying and what she perceives may happen after death. “I have no idea” said Mollie. “I am familiar with so many accounts and beliefs but in this dying process of letting go of everything I have no insight as to what happens after death. Any ideas I had are gone. Now when I go into those states which may be close to death there is nothing. Nothing but a vast nothing, totally empty. Maybe that’s all. Maybe death is the end of all and there’s nothing.”
Kaye stayed for an hour or so chatting. This visit was refreshing and enlivening for Mollie. Having someone here who is loved by Mollie and loves her makes the house dance with life. These two women have a special bond between them. Although I do not know what that is, being in their presence makes my heart sing and mouth smile a lot.
Earlier in this Blog I wrote of our friends Tom and Patricia from Alaska. Tom is now in a hospital with serious life-threatening cancers. Trish has been staying in his room with him for the past 2 weeks or more. Mollie has been a person Trish has turned to in times when support or assistance was needed. She called Mollie yesterday to give her an update of Tom’s prognosis which is not encouraging. As might be expected she is anxious, confused and stressed. Once again Mollie reached deeply inside providing as much support, nurturing and love as she possibly could. Even with her disease, pain and diminished energy Mollie’s natural love and affection pours out with a cascading of tenderness and warmth I would have thought impossible for her at this time. We hold our friends Tom and Patricia in our prayers and hearts.
I’m still on the catheter quest. Spending all morning on the telephone or waiting for medical personnel to return calls which never arrived, I feel frustrated, bewildered by impotency while wading about in a rip tide of indifference on sea of static outrage. A simple “We cannot or will not do it” would suffice and we could move on. Instead, we face a silent response with an unspoken promise of “Maybe later.” In the meantime, Mollie continues to drain. She’s pampered to the max in an unpampering environment of indecision.
Mollie has been resting and sleeping a good deal of today. This morning reflected a night of many clothing changes with all the urinary discharges. She was up more frequently than usual with bathroom excursions. Landing out of bed this morning I immediately dove into clean up and washing duties even before coffee! Mollie changed her colostomy bag. That’s a process which takes her about half an hour. The edema in her legs is causing increased swelling so much that at times it is difficult for her to bend the knee or ankle. Even the hip joints sometimes are rigid. Her right leg is usually more affected than her left. Putting on underwear or pants can be very taxing with this lack of mobility of the joints. The muscle structures and mechanisms of the legs are not attuned to movements without flexible joints. Dressing herself is getting to be very energy consuming.
As a result of last night’s ordeals and this morning’s challenges, Mollie fell asleep on the porch chaise for about 3 hours. Through the rest of the day her energy was depleted. That time did offer me the chance to spend much time on the telephone trying to get the appointments scheduled for a catheter.
Heidi returned today suggesting Mollie use surgical compression stockings on her legs to reduce the effects of edema. We shall purchase some soon. We did get an appointment with a urologist for next Tuesday to insert a catheter. There is a possibility Mollie’s bladder may be deteriorating. If so, the catheter probably will not be installed. Heidi was shocked at the difficulties we have had aligning all the paperwork and processes to make this appointment. At least there is now a date. If it cannot be done then we will go on from that point with what needs to be done next. In a private conversation Heidi responded to a question I had about my observations of what I see as Mollie’s increasing confusion. The confusion I see in her may be my fatigue and lack of clarity. Lately I have been giving more time and energy in my role and have come close to feeling overwhelmed more often. I needed feedback from Heidi to get a reality check. She told me this cancer process leads to increased confusion and lack of mental acuteness in most patients. “Her kidneys are not functioning very well. Because her elimination systems are dysfunctional, toxins are not being excreted as they should be. This will cause mental confusion and distortion along with other symptoms. Her confusion is not wholly due to the drugs. It is a part of the process and would be happening without her taking any medications.” I did not like hearing those words. They confirmed a suspicion I have which is not pleasant to ponder.
Babysitting my 5-year old grandson in the past I am aware of how his mind and language skills do not track or function like an adult mind. Conversational topic changes in mid-sentence occur frequently. This seems the natural learning curve of childhood language development. It’s not the norm for intelligent adults. Mollie now demonstrates these topical leaps like my grandson did. She has not been a person to do that in the past, this is recent. Also, the concept of present chronological time and date eludes her often. When she does get a grasp on “Yes, today is….” it’s gone in a few seconds and she will ask again “What day is it?” None of these things are important at all. They are merely signposts along this highway of dying. They can alert us to upcoming exits.
Speaking of this with Mollie today she recognizes some of her mental facilities are compromised. “I knew I was having difficulties and I hoped it was due to the medications. Do you suppose Heidi thinks my kidneys will stop and the cause of death will be renal failure?” My response to Mollie’s question “Even if she did, professional etiquette would probably dictate she would not answer except with an “I don’t know’.” Even with her experience the best guess would still be a guess.”
We also talked of illusions surrounding her dying, my illusions and perhaps other friends. “I pictured a scenario where you would be relatively vital and able to do most of the things you wanted to do so long as they were not too taxing. I also saw the picture being free of pain, or at least much less than has happened. Finally, when death arrived you would be peaceful, surrounded by some of us who love you and you would leave quietly. “A lady always knows when it’s time to leave;” you have always been a gracious lady. I knew my design was an ideal scene, sketchy at best. Now I see what a fantasy it was. Yet we both know other people who had a death very much like that. My mother is an example. Right up to the week before she died she lived totally independently doing what she wanted.” Mollie said, “I too had a picture like that. So, did a lot of my friends. Things have turned out quite differently. Michael, I want to ask you a question. Knowing what you know now and how this is turning out, if you had to choose again, would you make the same choice?” I searched the caverns of my soul, mind and heart for a totally honest answer. It took a few minutes. “Yes, I would. There is no doubt, no equivocations. In the future if someone I loved needed or wanted me to be this role for them I think so long as I have this health and strength I would do the same for them.”
We have learned along the way. If there is a next time, wisdom and experience could be an ally.
I have been to numerous potent and powerful spiritual retreats, many silent some not. None have approached the Satsang resolve of these weeks with Mollie and all it delivered. The people, the challenges, the support, the encouragements have been matchless. There is an endless cascade of successes and failures all providing nourishment and nurturing essentials to the spirit. For Mollie, too; if asked “Would you go through this again knowing what you know?” her answer might be the same.
Trish called yesterday in tears with news of Tom. His tumors are not responding to treatment. They continue to grow so all treatment will be stopped. There seems nothing more the medical world can do for him. His eyes are swollen shut with pressure from the cancers and the fluids they produce. He cannot see. He cannot eat or drink; nor can he speak. He is able to write. There is a litany of other physical complications he is encountering. In order to breathe he has a tracheal tube which will someday be pushed out by the growing tumors. As I relayed this information to Mollie our hearts were breaking for Tom and all Trish are enduring. Whatever Mollie was experiencing herself was cast aside by her empathy for those two.
After doing her usual morning bathroom clean ups Mollie got into a state of overwhelm or minor panic “I’ve got to change my bag. It’s a mess. There are only two bags left of the kind I like and the others I don’t know how to work the clip.” There was a tone of desperation in her voice as she was showing me the new clips for the bag. I could see she was in no state to learn how it operates. “Give me the clip and I will figure it out and show you at another time” I said. I gave her some of her wrist cream tranquilizer and several minutes later she began to settle. “I think I’ll have a cup of tea. That should help stabilize me.” Later she told me “I was lying in bed so comfortable I thought I did not want to get up. I just wanted to rest there comfortably. I started to turn over and realized I was soaking wet all the way up my back too. That set me off.”
Despite having a good night, relatively speaking for her, the surge of overwhelm happened because of a minor glitch in her routine. Today it was an especially dirty colostomy bag and wetness. Glitches happen, her reactive patterns of minor panic are happening more frequently. When they emerge, it drains energy from her already overwrought body. Words she speaks make little or no sense and she moves or walks about with no direction or intention depleting even more of her precious energy. Her body becomes shaky, especially the arm and hands and her entire demeanor mirrors it. I do my best to lead her into a more restful state or environment but she often will not follow. I know the words I speak are not fully comprehended. Something is happening in her mind or internal world which screens out the external. For those few minutes nothing else exists for her except the anxiousness. I am learning some methods to help her, like giving her the wrist cream at the proper intervals or at the early onset of panic. Often speaking calmly to her can redirect the momentum. Her panic states remind me of a child in a snit refusing to do something it does not want to do. Mollie is not defiant or petulant like a child can be and it is not intentional on her part. Like a child in such a state it is very difficult to communicate with her. Fortunately, these episodes have a relatively short shelf life. For me, I find it tests my patience and ability to remain calm and clearheaded enough to deal with the situation creatively and compassionately. It can trigger old patterns in me.
And in all this Mollie “sucks it up” phoning Trish who tells her Tom will hospice with no more attempts and curative interventions. Not only that, Tom still refuses to acknowledge his situation. Apparently, he thinks his illness is only a healing crisis. His doctors indicate death could be any moment or he could last as much as 2 months. Trish is dealing with all this while learning how to clean and care for a tracheal tube patient. Mollie gives Trish all the love, support and encouragement she can muster while speaking. I bow in reverence to such courage and love. By both of these women.
There has been a change in the odors from Mollie the past few days. They are not stronger but the pungency is sharper, ranker. It embarrasses Mollie constantly. Me too when we go out. Sometimes even the inside of the house has a faint barnyard perfume to it. The air freshener products available provide little relief, only masking. There’s nothing to be done about it. We must live with it as it is.
Lately the edema has caused Mollie’s right leg to have limited motion and flexibility. There are times when she drags it around. Yesterday she remarked “I feel Walter Brennen playing Grandpa McCoy.” On the more positive side Mollie is still very flexible in the rest of her body. She has no difficulty whatsoever bending from the waist to pick up something off the floor or reaching up or out with the upper torso and arms. Those years of yoga are paying dividends now.
Walking through the kitchen with a somewhat normal gait, albeit slow, suddenly and without warning her right leg moves into a sidestep when the pattern had been forward. It caught her unaware and she stumbled catching herself on the counter before falling. Her response? A laugh and “This leg has a mind of its own. Seems like it won’t do what I tell it.” We figure it weighs about 30% more than the left one. Seems it’s to be getting rebellious as it grows up. “Teenage leg” might be a new medical term we could coin.
This morning Heidi once again affirmed there are many toxins manufactured and circulating in Mollie’s body. An itching rash like outbreak has occurred, mainly the arms and legs. It seems to be an outcome of the toxins and a normal progression of the cancer. If the toxicity follows the usual pattern there will be more eruptions and other symptoms, including more confusion. Along with all of the organs those toxins also contaminate the brain. We have already seen indications.
I asked Mollie if she was getting closer or more willing to die because life was becoming more difficult and the body deteriorating more each day. She thought a few minutes, “No, I can’t say I am. There is still much beauty and interesting events going on. Talking with you, having visitors or phone calls, watching the antics of the Jays, many things, no, I am not ready to depart yet. Looking at this body and seeing how emaciated it is becoming I’m horrified. Yet life still holds much treasure for me. Even with all the pain and discomforts I am not ready to die yet.” A few minutes later she remarked, “As I watch this body I’m also amused. Looking at it I see plainly it’s not me yet I feel all that is occurring in it.” Giggling at her body later she started to laugh; “What is happening to this body is mind boggling, every day it seems further away from me as it deteriorates and shrinks. It has become a bag of skin wrapped around a skeleton. God knows what’s inside of those bones now.” Her lighthearted humor infects me too. We have a good chuckle, right from the belly of our lives.
Carrie called last evening telling us she will not be able to come here next week. Mollie was distraught with the news. Of course, Carrie was also. Their phone conversation was filled with immense sorrow. Carrie will have knee surgery the 29th and probably convalesce for a long period. This means she may never see her mother again. The sorrow of these two does not need to be imagined. It’s beyond grief. It hangs about like a funereal shroud breaking the heart with icy despair. After the call, I saw Mollie topple off the precipice of her breaking point into despair. I have never seen her tumble this deep. She seemed to bounce slightly hitting its bottom only to remain flattened on its jagged bedrock. She was too far down even to cry.
But during the conversation she once again reached into herself to find strength and compassion to support her daughter. Only after hanging up did she fall into the pit.
We had a conversation earlier in the day about how easy it was to overlook the grace that always cascades to us. There have been moments when both of us have become so attuned to the challenges and difficulties we are facing we forgot to look or open to that cascading. Instead we tried to solve difficulties using only our experience and intelligence. Acknowledging our oversights in that conversation we quickly became more aware of the availability of grace. Then later this new twist to life shows up. Perhaps because we had acknowledged our tendency to ignore grace earlier, we once again allowed it its flow into our lives quickly.
I was disappointed my planned retreat to the ocean was curtailed. I could benefit from a respite for a few days. It hurt realizing it was not going to happen. Doubt also crept in; “Will I be able to do continue without breaking down myself?” In the same moment, I was aware of Mollie’s disappointment and hurt. But the opening to grace then gave me something I and Mollie need to continue with this process. That gift was more energy and strength to the rock solid, presence I can provide. I can hurt, be disappointed, despise the circumstances creating the sorrow of mother and daughter, and still be available for anything. Mollie needs all the solidity I can give her now. Grace provides it. Its measure is more than I ever thought I could possibly embody. And it’s a challenge. But that’s what love is, a challenge. It shows us we are more than we thought we were.
Today Mollie’s daughter Christie arrived from Santa Monica with her two daughters Morgan and Veronica. Spirits have been lifted with the love and enthusiasm they have for Mollie. She adores, adoring them they adore her in return. Today was the first time I had met Veronica and the last time I saw Morgan she was a toddler. The house is a whirlpool of love. It’s refreshing and nurturing to soak in its warm waters. How much they cherish each other! They went off for a little adventure of lunching and a ‘girls outing’ of some sort which we males are not allowed to know.
Having the girls and Christie here last evening was joyful. Mollie’s energy was good; she napped for about an hour and a half when they returned from their outing. We had planned to order out for pizza or something easy for dinner but I felt like preparing something special. So, I bar-be-qued steaks and prepared a full feast. I was surprised at my energy to do that and how much enjoyment it provided me and how much everyone enjoyed the meal. We spent a long time at the table talking and connecting. I’m honored to have had this opportunity to know Morgan and Veronica. At the same time, the dinner and evening had a taste of the “last supper” flavor to it.
The Santa Monica contingent had to leave for home late this morning. Before departing we went to out to coffee and it was there they said goodbye, most likely farewell, to Mollie. Despite the joy and enthusiasm of the weekend events, the sadness of their returning home and the likelihood of them never seeing Mollie again was overwhelming. When I accepted this role as Mollie’s caretaker I never gave a thought about how difficult it would be for me when she said farewell to her children and grandchildren. To be present for their final hugs and “I love you” evoked a grief so intense it was even below tears. At that level, there’s nothing left.
Although Mollie and I had spoken earlier about what she was experiencing with the girls departure, I was amazed at her ease telling Morgan and Veronica that even though her body will go, she will not. She was quite frank and talkative with them about how her body is deteriorating. She showed them her colostomy bag and how it all works. “These things happen to bodies” she said, “But nothing can happen to the spirit. That’s where I will always be with you.” She said she will always be in their hearts and they will always be in hers. “The love I have for you cannot die with this body. It can only grow larger and stronger.”
Surrender and letting go had been relatively easy up until today.
Mollie woke up this morning “Hurting all over like I’m getting the flu.” Walking about the house and drinking her morning tea helped a bit. Heidi arrived about 9:30. By that time the morning medications had time to do their work. She told Heidi her pain level was between 3 and 4 on the 10-point scale. By noon Mollie’s pain level increased significantly. “Something is happening which has not happened before. There is a pain in the rectal area which not only hurts but causes pressure. Something is being eaten in there and it’s like a churning or grinding.” The odors have changed again this morning. Once again, they are not stronger but they have become more putrescent. The edema in the legs is also worse. Her legs are hard as mahogany pillars now from the ankle to the top of the thigh. I’m afraid they are going to burst when I feel their tautness.
She did feel a little better after a nap in the afternoon. We went out to do some errands and took another circuitous route home enjoying the scenery and time together.
There are many ups and downs these last few months with Mollie. I have listed many of them in this Blog. My sense is now the downs are further down and the ups are of shorter duration. Although Mollie tries very hard not to burden me or others with those down episodes I see in her demeanor and in her eyes, it is becoming more difficult for her. It’s harder for her to keep up her attitude, grooming and personal sanitation to her standards. Notice I did not write she neglects any of those undertakings; they only are harder for her to sustain.
I wonder how much time she has left. Last weekend’s visit by Christie and her daughters was another one of those “lose ends” which were wrapped up. Saying goodbye felt like some type of completion so Mollie can allow herself to leave. With each “wrap up” there is less to hold her here. As her strength and endurance wanes I sense there is a “wrapping up” of the vitality of the body; another surrender or goodbye. I even sense that with myself. Both she and I are bidding adieu to the earthly interactions of these forms of Mollie and Michael. They are becoming completed as our life together gets “wrapped up.” If there is something left for her to do before she departs it may be with Carrie. But that’s just a guess on my part. Love doesn’t tell me what it has in store for anyone, including me. I’ve learned to love Love that way.
Sometimes I feel afraid of Mollie’s death. Not about me or my life afterwards but the actual physical minutes or hours of it. I have no idea of what I will do or how I will feel. The questions I ask myself are “What will it be like if I’m gone and come home to find her dead?” “What will happen if I’m here and she has an agonizing death?” There are more questions which this mind can conjure and each one elicits a shock of trepidation or fear of ignorance. There are no answers to the questions of course. I only recognize in my “unknowing” exists an identity with a nucleus of fear. This fear is not a fear of death, mine or hers. It’s an anxiety in me doubting I won’t know what to do in the last hours. It’s me blocking the flow of grace with my mind. I can feel the constriction.
This morning’s appointment with the urologist was disappointing and very painful. The doctor tried to attach the catheter through the vaginal cavity. A small light was inserted along with a probing instrument. “It was excruciating, I felt like I was being skewered. It was awful.” The physician did his best to get it inserted correctly but discovered in the process a catheter would have no effect on the urine leakage containment. It turns out Mollie’s bladder is too perforated to hold the supra-pubic catheter. It is probably being devoured by the cancer. Liquid would still continue to drain through the vaginal cavity instead of into a container. The image I have of her bladder is of a balloon filled with water streaming out through many tiny holes. If her bladder is like the image the entire area would be showered with urine only to fall downward. That’s probably what’s happening now. There still exists the possibility to connect to the ureters between the kidneys and bladder to an external collection device. This would require a surgery at a distant hospital with more bureaucratic hoops of approval, scheduling and etc. We’re off to another possible snipe hunt into the medical marshlands.
Walking out of the doctor’s office Mollie was devastated. She was angry, frustrated, and feeling hopeless. But 20 minutes later all that had passed and she was back to her full acceptance of life as it is. “I guess we will just have to continue doing what we were doing until we don’t.” Once again, I bow to her courage and solidity in her Beingness.
All the events of this morning occurred while she was feeling ill. Like yesterday morning she woke up with “flu like” symptoms. Besides the daily pains of cancer her muscles were achy, her bones and joints hurt, and her stomach was upset. She vomited twice before we departed for the doctor. While waiting in the office she complained how tired she was. She had been awake, less than three hours then. Returning home, she ate some cottage cheese and fresh peach but that did not set well with her. “I think I shouldn’t have eaten anything.” She went to her bed and lamp sleeping two hours.
“Equanimity” has been one of Mollie’s favorite words. It is a state of consciousness. Ever since we met she has been mentoring and teaching me its power and importance as a central axis in life. In years past when something or someone (me) upset her causing her to lose her emotional or mental balance she would resort whatever techniques she used to drop her reactivity quickly. (Neti, neti) At times I would lose my center she would point it out and help me recover it. When I would refuse her assistance trying to engage her in my drama she was still able to maintain equanimity. (It often drove me nuts she wouldn’t join in!) Through the years, largely through her patience and demonstrations, I learned to drop those beliefs and behaviors which cause me and those near me suffering from my loss of equilibrium. Today, and this last weekend, Mollie’s strength and balance of equanimity served her, and me, splendidly. Without it, the devastation of Carrie’s non-arrival and today’s non-catheterization could have been shattering. Instead of “Why me?” she was able to say “What next? Answer: More of the same.”
Mollie woke this morning feeling better. Her flu symptoms have vanished and she had a 5 hour sleep last night without getting up to change diaper padding and clothing. We even ventured off to our favorite produce market for veggies and fruits and partaking in some refreshments sharing a scone. We were gone about an hour. That seems the limit of Mollie’s endurance. Returning home she was very tired and immediately went for her lamp and bed. The upset of yesterday’s visit to the urologist is completely erased from both of us. Now the attitude is we will keep living, loving everything and doing whatever needs to be done to enjoy all of life for as long as we are given time to do so. It’s freeing not dwelling on what did not happen. It keeps our interactions and relationship fresh and dynamic.
There is no stagnation. Nothing is blocking the cascade.
Heidi has been bugging us to get some thigh length compression stockings which she thinks may help with Mollie’s edema. They arrived yesterday and with much struggling we were able to put them on those mahogany pillared legs. It took all my strength to pull them on with Mollie helping. I was surprised they did not rip. Those things are strong! They have been on now for 24 hours and seem to be helping, not with the swelling but making it a bit easier for her to walk and she may be a little more stable on her feet. Returning from our morning trip as she walked up the stairs each step she took reached for the step above. Before she would take one step then bring the second foot to the same step then take another. (One at a time) This is the first time I saw her take a full step with each leg in over a month.
As the journey with Mollie continues along a path with an apparent destination no map or GPS can track or anticipate, it is not a traveling of one person alone and it’s more than only her and me. Support and encouragement abounds from sources and people here locally and some from miles away. I have found them fountains of needed life-giving cleansings and vitalization. I’m flabbergasted to find my biggest resource of support turns out to be the one I have committed to support, Mollie. It’s an unexpected discovery finding sustenance in the very person who is fully dependent on me for her support. “I couldn’t imagine being without you being here for me. I wouldn’t know what to do or what would happen to me” Mollie has said. It’s true. I am devoted to her care. At the same time I could say those words to her. There is no way I could give all that I give to Mollie without her supporting me. Everything I give her returns to me in larger measures. What I receive from her gives me something I can give back to her. Without what I get from her (and I can’t put what that is into words) I would probably have little left to give. I would never have imagined, with all of the external resources and people available, my greatest source of support is the very one I am supporting.
Here is a testimony of symbiosis. Supporting Grace is amplified and returned by the receiver of it.
After Heidi left this morning Mollie received a call to schedule her kidney drainage catheter for tomorrow morning. There is still some paperwork which must be completed by hospice before installation. We need to be at the hospital in Roseville by 9am and surgery is scheduled for 11. She should be able to return home early afternoon. “I’m a little afraid of them poking into my kidneys. I did not want them to do that originally. But now I will do it to make my life less difficult with all the padding and cleaning myself. I am afraid. I know what it takes.” I had to lighten things up. “While you’re in surgery I’ll go have my belly button pierced, then we both can have something ornamental dangling from our mid-sections.”
Mollie showered soon after our meeting with the nurse. Coming out of the bathroom she could not speak without slurring her words and she could not maintain balance or an upright position. I grabbed her and we worked our way to the couch where she could recline. She appeared to me to be like a very drunk person and my thoughts went to the word “stroke.” She went completely unconscious and limp. I was shocked. It happened so quickly it caught me totally off guard. I thought she was dying or even dead as I dragged her a few yards. Once on the couch I sat holding her hand and in silence telling her, and me, it was ok to die. After several minutes, she began to awaken from the state and her speech slowly returned to normal. She seemed to recover completely. But I insisted she remain on the couch and solicit my help if she wanted to get up. As I told her about what happened to her she replied everything is a blank. “I have no memory of it whatsoever.” We did the usual test indicators for stroke. There was no evidence of one. After a while I was able to regain my composure. We fixed her a little lunch which she ate.
Rereading the above paragraph, I realize I have not communicated the impact on me of seeing her staggering, looking into her blank eyes and not being able to understand what she was saying. A day later the images and memories are vivid and unnerving. Not only did I feel helpless, I had no idea of what was needed or what I could do. I was totally lost. It’s shocking to acknowledge how much is beyond my ability or knowledge. I’m stunned at how vacant that feels to me, like a crumbling abandoned home which once housed a loving family.
Mollie weighs over 150 pounds now due to the fluids in her legs (about 20 pounds of it). I can easily lift 150 lbs. but her dead weight with a limp body made it impossible to hoist her. I have discovered I will need to get help should she fall or faint to the floor. We talked of this and Mollie suggested I just cover her on the floor and put a pillow under her head or make her as comfortable as possible right where she is. It sounds immensely sensible to me.
We went to the hospital in Roseville early this morning to have a catheter tube connected to each of the kidneys. It came about suddenly yesterday afternoon when a telephone call informed us it could be done today. Naturally we jumped at the opportunity. I spent a good deal of the rest of the day getting all the “blanks filled in” and “ducks in a row” with the medical bureaucracy. The surgical procedure, a bilateral nephrostomy tubal, is accomplished without anesthesia and usually takes about 45 minutes. Patients are sedated for the procedure and after an hour or so recovery period are usually sent home. They are ambulatory and the convalescence is supposed to be relatively quick with minor pain.
But something happened with Mollie. There are two catheters now draining from her kidneys. One is for urine as would be expected. That one is draining waste liquid and there is a pink color of blood in it. That’s also to be expected, normal. Into a bag from the right kidney drains a substance unknown. The surgeon remarked it “Looks like chocolate pudding.” He had no idea what it was. Instead of allowing Mollie to return home after the recovery period they kept her for observation in “Post-op.” an additional 4 hours. She was very upset despite her drowsiness from the sedatives. The surgery had already been delayed an hour. This extra time was too much to bear. Trapped in a bed for unexpected hours and very uncomfortable, her criticisms of the events were merciless.
There were many snafus and generally the experience was a fiasco. I put much effort into keeping her, and me, calm and centered. It was another test on the spiritual trail of equanimity calling for surrender and humility. In the end the nephrostomy was successful and our hope remains her energy can now be directed toward something more pleasurable than the aftermath of constant urine trickling. We returned home shortly before dark, ate a light dinner and retired early. Each kidney now has its own bag. Looks like Mollie has become more than a singular bag lady. She has three! Will this qualify her for the Guinness Book of Records? I suspect not
Reflecting on the past week’s transpirations, Mollie’s ups and downs and my dealings with the medical bureaucracy I see it was advantageous I was here instead of away. As her legal caretaker I have access to people and resources unavailable to others, even her family.
Awakening this morning Mollie was in a moderate amount of pain and discomfort. Some of it may be attributed to the surgery and some of it not. There is now a constant pain in her rectum. “It feels like I have to go to the bathroom. But that cannot be the case.” We can only surmise the cancerous tumor or fistula is growing larger in that region. Her right leg now causes much more pain which affects her walking and sitting. This too is probably the cancer attacking bone somewhere in the pelvic girdle. Despite the new urine drainage systems, which seem to be working, there is still a significant discharge through the vaginal cavity. The odors accompanying it are still pungent. We hope and pray in a few days the drainage will diminish more. If the nephrostomy reduces the liquid volume by half it will still be a boost to her time and energy.
Ramana Maharshi said “You thank God for all the good things that happen to you, but you don’t thank him for the bad things as well, and that’s where you go wrong.” (That’s exactly where the new age thinking goes wrong also. Its corollary “What did you do (karma) to cause this?” or “You can cure this if….” are in essence refusals to express gratitude for those bad things.) I have realized Mollie’s cancer is something I am not grateful for and have instead prayed petitions for succor and comfort resisting appreciation. I am thankful for the love, grace and opportunities to experience all of life deeper because of what Mollie has delivered to me these past months. I say prayers of gratitude for the people and support showing up with us but thinking of saying prayers of thanksgiving for her cancer, I constrict something in me. I close instead of open and feel the glitch of another identity in the shadows. Speaking of this with Mollie I see she has no resistance to express gratitude for her situation whatsoever. She is thankful for life, all life, now including the cancer. Without compunction or aversion, she can easily say “Thank you God for this cancer.” Whatever that shadow is in me is being defined and made distinct by her light and clarity. In that shadow is the possibility of facing hideous cancer myself. Would I be able to do it with the grace and gratitude Mollie shows? Also, would I have the courage to turn my life over to someone else like Mollie has done to me? I would prefer not to think about or answer those questions.
She wonders at times what meaning the experience of dying from cancer might have in a greater context. “Does it have some healing or significance for humanity? Does it have some higher meaning?” In the end these questions have no answers. She recognizes their only reality is to fortify the identity of a questioner. Yet the identity persists with questions like “Is this pain in my leg caused by the cancer or something else?” In the end the questioner is only another distraction. It helps keep her focus off the pain. Like the fiction she reads the identity of the questioner is useful, but not real.
This morning while lying on the chaise lounge outside Mollie fell asleep for a few minutes. Awakening she opened her eyes seeing “The magnificence of creation. It was as if all the veils between me and creation had been lifted. The colors were incredible and there was nothing but glory in all I could see.” A short while later a bird which neither of us knew or had seen before landed on the porch railing displaying itself to her. It remained a few minutes then departed. When she related this to me she also told me the answer to a question I had asked her yesterday. The question was “What or how has this dying of cancer experience changed you as a human and as a spiritual being?” Her reply today is “I am a woman dying of cancer.” That’s it, direct and succinct.
This second day after the nephrostomy we went to the web to discover how to care for, clean and flush the apparatus. What we discovered was daunting. There are processes which need to be learned and followed. Those procedures cannot be done by Mollie as the tubes exit the back in the lumbar area below kidney level. I know nothing of these procedures and need some training. Mollie spent years in nursing finds the procedures and systems challenging. When she went in for surgery I asked for a class or some instruction about “care and feeding of the animal.” None was given to me or Mollie during her extra 4-hour confinement in the hospital. I see now I could have been a bit more pro-active or insistent. My communication skills were not employed to our best advantage and I made an incorrect assumption information would be given to us. Our next opportunity to learn is Tuesday when Heidi returns. If Heidi cannot teach me she will direct me to someone who can. In the meantime, I will watch carefully for signs of infection or malfunctions in the apparatus.
It’s very strange seeing two holes in Mollie’s lower back with tubes protruding from them. The skin and insertions look healthy, clean and with good color. There are still discharges draining from the vaginal/rectal opening. Some are the fluids from the cancer and a little of it is still urine. But the volume is far less. She still needs to change pads about half as often as before. Last night she was able to sleep for 4 uninterrupted hours, arise and change pads and empty bags, and then return to sleep for over 3 more hours. During the day her bathroom excursions are less frequent. The time she spends during each visit is also reduced. There is no resistance to gratitude here. The nephrostomy has made Mollie’s life less difficult and more comfortable. Thank you, God for another gifting.
Through all of this Mollie still has severe pains and each day her energy is depleted a little more. Through all of this Mollie retains her equanimity, graciousness and adoring presence.
There may be a problem with the nephrostomy. Last night Mollie had much urine drain from the vaginal cavity soaking her. She was up several times changing pads and cleaning herself. Very little urine drained into the proper bags. During the day, the bags filled normally and what discharges exited through the vaginal area were probably fluids generated by the cancer. It is easy to detect urine from other liquids because she is taking a medication which colors her urine orange. Other discharges are milky or grey and generally contain bits of tissue. They harbor the odors. Connecting with the people of medical world today the attitude seems to be “Let’s wait a day or two and see what happens with the nephrostomy.” Mollie was discouraged this morning repeating “I went through all of this for nothing.” It took a trip to the park feeding our waterfowl friends and enjoying the lush beauty around us to recover our balance and equanimity. Bless those beautiful Canada geese. They too have been a serendipitous support.
Heidi taught me how to change the dressings around the new tubes exiting from Mollie’s back. We knew there was much to learn about the nephrostomy setup besides a simple dressing change. The tubes exiting her back are held in place with a plastic butterfly-like apparatus with a clip to hold the drainage tube. The holes entering the muscles of the back need to be cleaned and examined for infection or signs of leakage and swabbed with antiseptic. Of course, Mollie cannot do this. She cannot see it. After Heidi’s tutelage, I am confident I can handle the entire process easily. She showed me the mechanics and physics of how the system functions. I now understand it and have seen with my eyes how it all connects and corresponds. Should anything out of the ordinary happen I know I could handle it. The changing will be done every 3 to 7 days depending. It may not get wet, as in showering. Should that occur then drying with dressing change and swabbing must happen ASAP. I am very grateful for Heidi’s instruction. What appeared to be a daunting procedure is now clear to me. I feel at peace with it. But that does not mean I’m ready for med school!
As to the drainage of urine still being observed in the padding Heidi thought it natural and credibly normal. She suggested we wait until her return visit Friday before making any decisions about our next step. We will watch what happens with it. At that time, a diuretic may also be prescribed which could reduce the edema. With this medicine the fluids in her legs, mostly water, would be processed through the kidneys and eliminated through urination as in a normal functioning body. I’ve been massaging those legs recently but they remain as hard as marble. Mollie predicts “I will not be as Lot’s wife, a salt block, but rather than dying I will turn into a stone statue.” “Where would you like to be placed, Trafalgar Square?” I quip. “Not there please, somewhere more beautiful and peaceful.”
Should that happen I promised to place her somewhere on Mt. Shasta.
Even though Mollie was tired yesterday Kathleen stopped by for a visit of about an hour. They sat outside in the air of a cooler afternoon. It was encouraging to see how much Mollie had enjoyed her visitor and how much it had “picked up” her spirits. For dinner, I made a huge spaghetti dinner filled with fresh vegetables and a little meat. Mollie dove into it with true “Mediterranean gusto” enjoying ripping a sourdough baguette apart by hand and daubing up the sauces. And yes dessert. She ate a couple of madeleines even allowed herself a small glass of cabernet! These evening meals are now an opportunity for her to let go into relaxing. In those exhalations, the focus of her mind changes from pain to pleasure. Her mental clarity seems to improve as we talk to each other watching the daylight dwindle into the softness of twilight then dim into darkness. Blessed moments in the evening of life.
Last evening after dinner outside on the porch we spoke of how our lives have changed knowing each other through the years. When we parted as lovers, years ago, something happened internally to both of us which freed us from the bondages and expectations of romantic relationships. The ideas we both had of what we wanted in relationship clashed until we recognized any attempt to contain love will not work. The bonds which imprisoned us were those ideas and expectations of what we wanted or what we thought relationship should be. Love wants to flow like a river. If it’s dammed or restricted in any way pressure eventually erodes the blockage. Today Mollie and I are able to be in this river as one of its currents is ready to empty into the sea. We spoke in the evening of how free it is simply watch love moving us through life. Looking into each other we see our own reflection, sameness in diversity.
Later that evening she confessed how seeing her body deteriorate was sad and difficult for her to accept. She was a beautiful woman with magnificent skin and a trim fit body, even recently. All that is gone and as she looks into the mirror she sees an old woman with a body she calls “ugly.” “It’s so sad to see this and so hard to accept. I know it’s only vanity but that does not make it any easier.” There is nothing I can say to this. Any attempt to soften her feelings would be an insult to her and a disservice to me. I can only listen. Listen with my ears and heart to the regret coming through her words.
When she was in the hospital last week I stepped out for lunch. By chance and expedience, I found a fish and chips place nearby. It billed itself as authentic London fish and chips and was operated by two Japanese women. Telling Mollie of it a day or two later she said “It sounds good. I’d like to go there. Sounds like they use a Japanese tempura style cooking.” This afternoon we went and she was not disappointed. The trip took us about an hour and a half. Driving home Mollie was becoming uncomfortable, her bottom was hurting and her energy waning. She was unsteady on her feet, and only about half present the entire time. “Spacey” may be an adequate description. I had to pay extra careful attention to her the whole time, Even, as she finished her meal, she was beginning to fall asleep and worked hard to remain alert. I write these words with a sad heart as I suspect these sorties into the world may soon stop all together. I see death approaching and can smell its thievery.
I have known from before beginning this writing Mollie was terminal. There has been no denial or avoidance of recognizing and speaking openly of her impending death. She accepted it and so did I. As I see her death nearing more each day a deeper recognition of it slices into my heart and soul. Each day some of the acceptance I have of her death gets eroded away by the daily experience of watching it happen. It saps my strength, undermines the foundation of my solidity and triggers sorrow of all the people and things I have loved and lost. It’s heartbreaking. I’m acutely aware “Here is another person I love in my life and will soon lose.” No amount of acceptance can or does mitigate the pain and fear of that reality. To say I accept it is correct. But it’s no less correct to say I hate it and wish it weren’t true. As I watch it draw near I feel much trepidation and mournful tears.
There have been times when I became really pissed about having to lose people I love. Now is one of those times.
Mollie now has a prescription for a diuretic and a Lidoderm patch for bone pain which is to be worn over the femur in her upper leg. All indications point to the cancer having metastasized into the mid skeletal structure. On the more positive side the night leakages of urine seemed to have been stopped by placing the nephrostomy bags lower so gravity pulls the urine into it. Last night she awakened once about 4am, emptied the bags and went back to sleep until after 7. It’s great to see her refreshed and rested. She is beginning to have more energy to enjoy more of life. Much of her time is spent at home but the quality of that time generates more appreciation of life.
I have been massaging those pillared legs and some of the fluid and energy gets freed up for a short period of time. Today Mollie had a massage therapist friend come here and give her a “real” work over. That freed up more than I was able to do. If she can keep her leg muscles functioning better and if the diuretic cycles correctly, most of the edema fluids will flow back through the kidneys. She then may be able to walk with less effort and generally feel better.
In 11 more days Mollie will have been here with me four months. There remains the possibility she may live another four months or more! Time left for her is becoming less and less significant or important for her or for me. The most significant realization of these months for both of us has been with the awareness of death looming presently we are paying much more attention to life. Although I as the support person do not have the impending death sentence Mollie has, we are recognizing the distinction between caregiver and patient blurs because the visage of death’s presence is seen more clearly. Its countenance helps me embrace peacefully I too have an expiration date stamped on me.
That does not change the role I play in her life now. At the present moment, I am not the one needing care. Instead I am a “house husband.” I wash her clothes, fix her meals, do the housework, buy the food, and generally do all a dutiful “house spouse” is asked to do. According to the traditional protocols of hospice caregiving I am also expected to provide emotional support. Some professionals have suggested that role leans toward becoming an “emotional sponge” soaking up the patient’s ups and downs of their roller coaster ride through decision making, treatment and finally death.
One might expect the patient facing death would be in more emotional upheavals than the support person. This is not often the reality. Caregivers often face a typhoon of blustery emotions, sometimes even more than the patient. But because many support people find they do not want to upset their charge they often “keep a lid” on their own feelings. “After all, my loved one is dying painfully. My problems are puny by comparison” might be a typical rationalization. With this scenario, they may feel they are responsible for their patient’s feelings or it may be their patient does not take responsibility for their own feelings. Either way, connection and communication are interrupted or blocked. This impasse can become a pressure cooker. Emotional energy remains impacted and toxic. At this point it may be crucial for a support person to find external sources for venting and release.
Typical outlets for help may be therapists or group meetings of support people. (Many are based on the opportunity for caregivers to vent thus avoiding confrontations with patient.) Lately some family and friends have intimated I should partake of these resources. Many of those folks have been in this role themselves and understand at this juncture of Mollie’s illness the physical tasks and responsibilities may not be difficult, it’s the emotional roles which are wearing and wearying. That may be the case in many situations, not this one. Many years ago, Mollie and I learned how to communicate emotionally without blame, judgment or trying to change each other’s perceptions or emotional states. In a nutshell that skill is called Listening. Real Listening. Attempting to be an emotional sponge or to soften another’s emotional reactivity is not listening. Such interaction is often isolated in the egoic needs of the listener. It is not empathetic, compassionate or helpful. Raw listening is. In years past Mollie and I discovered the freedom and power of pure listening; listening not only with the ears, not with the mind, but listening with the heart and speaking no words. The speaker is reflected and affirmed silently by the listener. It’s the most loving gift one can give another in emotional turmoil. In our history together, we have fine-tuned this instrument of communication so today it pays dividends in grace. Without Mollie’s ability as a listener, hospice with her as a spiritual deepening into aliveness might not be possible for me.
Today, as my emotions of resentment, helplessness, fear or whatever emerge it is neither necessary nor advantageous for me to “keep a lid” on them. Mostly, I can speak them to Mollie without blaming or judging her for creating my emotional state. When I do blame or judge her the untruth of it becomes immediately apparent. Once an emotion is spoken it discharges instantly in me. The same is true for Mollie. Once spoken her emotions have no power over her actions or feelings. Her feelings of fear, anger or whatever can be spoken as easily to me as mine are to her. There is nothing which need remain smoldering under the surface. We have learned how to listen to each other without trying to change anything. An example is the other night when she spoke of her deteriorating body and her disgust and sadness of it feeling it “ugly.” I listened with the heart and said nothing. I could have said something like “You’re still beautiful to me sweetheart.” I validated her experience by reflecting it, not trying to change or soften her emotional experience. Doing this leaves emotions with nothing to stick to.
Admittedly, for this to work effectively both the caregiver and patient must have the skill and coherency to participate. It also requires tons of willingness to be vulnerable and defenseless. At the moment it is working, for Mollie and me. Should she become unable to communicate in this manner or if she entered a coma or became disoriented and irrational, then things would probably change. The same might be said for me if I push too close to my “breaking point” reaching the limits of capability or endurance.
I write of this partly as a caveat for anyone in a caregiving role. Much focus is placed on the needs of a patient and I have found in my recent hospice training the needs of the caregiver glossed over too lightly. I have been surprised in my role here with Mollie at the emotional and mental demands placed on me. Those demands are not entirely from her. Many are expectations I have of me and when I cannot meet those expectations self judgment or criticism often arises. I’ve got to handle that myself although I can and do share it with Mollie. If that type of situation is not handled in a healthy manner it will pollute the relationship between caregiver and patient.
I also want to emphasize the importance of spiritual work, especially for the caregiver. Neglecting it can cause a downward spiral into depression or worse. If a caregiver is involved in a spiritual practice I feel it is important not to neglect it. The same can be said for emotional and physical health. Excessive disregard of personal wellbeing by a caregiver in favor of the patient’s concerns can be devastating for all participants.
I am constantly aware Mollie and I did not endure a lengthy process of her attempting cures with its decisions, evaluations and wonderings if she made the best choices. I did not experience the hopes of remission and the disappointments of recurrences. She came to my home already a decided hospice patient. I can only imagine what it would have been like for me if I had been part of Mollie fighting cancer for a period of time only to lose the battle. I suspect the ups, downs and stress of that fight would make this hospice role much more difficult for me. Maybe I would not be able to handle it. I may have run off trekking in Nepal or fishing in Colorado instead of documenting medications and arraigning colostomies and nephrostomies. Clearly grace had something else in mind.
Mollie went for a chariot ride in the park today with me pushing her around in the wheelchair. Once again, the morning air and breeze made for a lovely outing. Her waterfowl friends came quickly in waddling gaggles to her handouts of goose groceries. They seemed especially hungry today, and aggressive. One bit Mollie on the hand in its enthusiasm to snatch a morsel from her before she could drop it on the ground. But as usual her spirits rise and more peace settles into her with these excursions into the natural world. She was a little more tired than usual after this outing. She also seems so have some stomach cramps which discomfort her. Bad food or is it a virus? Who knows? But we must be more careful now as her immune system is more compromised.
I have been reading to Mollie sometimes in the evenings as we sit in the living room before bedtime. Mostly the subject matter has been spiritual material. (She reads fiction much of the day.) Last evening, I read some excerpts from Ken Wilber’s Grace and Grit. It’s been perhaps 10 years since I read that work. I recently perused it again. (I wrote of this book early in the Blog so I will not recapitulate it here.) Last evening, I read Mollie a talk Treya gave at Starwood in 1989 just a few weeks before she died. The theme of that talk was a personal account of her becoming more present, alive and loving as she journeyed through cancer treatments and on into death. On that journey, and maybe because of it, she found the fullness and peace she had been seeking all of her life. In the end, she welcomed her death like the arrival of a new baby. It was a birthing into completeness. “I am so happy” were some of her last words. Both Mollie and I recognize how similar this experience into the fullness of life is for both of us. As I read out loud her speech the chills of recognition ran up my spine and the hackles on the back of my neck prickled. As a sidelight, I recommend this book whether or not one is involved in a hospice environment. It’s really about finding wholeness in our lives where we think we are incomplete. Treya’s demonstration can aid us to find it in ourselves.
The nephrostomy is working well. Two nights in a row Mollie has made only one trip to the bathroom. There is still discharge and this morning it was spotted with blood. All and all, Mollie has more energy. Today there was much housecleaning for me to do so she volunteered and dusted the main rooms. She feels better contributing as much as she is able to the general upkeep here. Sometimes I think I would rather see her using available energy to do something for herself but I realize knowing she contributes and helps lifts her spirits and makes her feel participatory and involved. Besides, I am grateful for the help.
Speaking of better energy levels, I took Mollie to Ross this morning so she could purchase a skirt and larger pants to cover all the bags she totes around under her outer clothing. Returning home, she discovered the pants were too small to cover the bag-works to her satisfaction. Back we went to Ross for an exchange to larger model. She did well. She still had energy left when we finally landed on the tarmac of home.
This jaunt was necessary in her mind because she still has some stomach or digestive problem which produces much flatulence. That gas does not vent to atmosphere like it does with most of the rest of us folks. It remains in the air tight colostomy bag. The bag grows and fills with her emissions like a balloon. I have seen it larger in size than a fetus in the middle of the third trimester bulging under her garments. I have thoughts like “This will not be pretty if it bursts!” But the thing is durable and able to expand far. At the bottom of the bag is a secure apparatus which is unclipped and waste (or farts) can drain.
An hour after we returned from the skirt caper Mollie fell into severe pain and a crash into substantial energy drain. “Tell me what to do Michael, I’ve crashed hard.” I got some meds for her and set her to her bed and infra-red lamp. Half an hour later she arose still in pain but some of her vitality had returned. “That lamp is too warm. It hurts my bones” she told me. As the cancer eats into her pelvis and femur the pain is more severe than the pains inside the abdominal region. The lamp seems less effective for the bones. It worked better on the soreness of the vaginal/rectal wound. But with the decrease in urine flow through that area the rawness is showing signs of healing. While the lamp did help reduce the pain of urination it has little effect on the deep bone throbbing and the grinding pains located in what remains of the rectum.
Things change quickly in Mollie’s journey. If you have been following the Blog you may remember how many difficulties arose and were predominant for a week or two then waned as another challenge arose. Once there was severe pain with the bowels then the colostomy corrected it. Then the sore opened further in the vaginal cavity and a few weeks later the Neurontin helped with that. Then there was the constant padding and odors. Finally, the nephrostomy helped with that. So, it has been through this entire hospice. This morning she had lots of energy only to have it wane quickly and not return anytime during the day. What’s next, anything?
We did talk last evening about her going to a nursing facility if conditions should warrant. She would prefer not to be at such a place if it could be avoided. She is also perfectly accepting if I think it necessary. I told her “I will do everything in my power to keep you here. I hope this is where you will be staying when death arrives. I promise to keep you here if at all possible. The only scenario I will consider sending you somewhere else would be if you were in a coma and needed constant monitoring and attention. Even then I would do everything in my power, use every energy and resource to keep you here until you die.” And Mollie in the loving gracious way replied. “Really Michael, I appreciate that. But if I am unconscious it would not matter where I was. A facility like that would be fine. Until such a time I too would like to remain here with you. But if it gets to that point, and it could, please make it as easy on yourself as you can.”
Those words reflect the loving and selfless nature of Mollie Summerland. It’s not something new with her. I think she was born that way. I am amazed at how little the first-person pronoun “I” dominates her life and relationships. Long ago the pronoun “You” became the fulcrum of her life and consciousness. It’s where her Being lives. Even today in the throes of body pain anguishes and rubbing noses with the grim reaper, the “You” ness of all life fills her every breath. No matter her pain, when friends come by, she drops the “I” almost entirely. No matter her pain, when someone phones her the conversation sounds of “You” much more than “I.” No matter her pain, every minute I’m with her she constantly is considerate of my time, space and energy. No matter her pain, all these are done with vibrancy, a love of life and an appreciation of people. She encourages me to take care of myself even spending more time away. As much as I ask, “What can I do for you Mollie?” She probably asks, “What can I do to help you Michael?” even more. I have learned from her over the years the easiest way I can live a life of gratitude and appreciation is to abide in that second person pronoun.
Last night Mollie was up several times with a full colostomy bag and urinary leakage. As a result, she got little sleep and is tired. Her naps did not help her much. The edema does not seem to be responding to the diuretic and the legs continue to harden in places. Today a new knot appeared at the top of the right leg just under the buttocks. I massaged her legs for a while using all the strength in my hands and arms to break up the masses of clutched fluids. It gave her a little relief but did little to release the evidences or discomforts of the edema.
The pain in the bones of her hips or femur is increasing and last night she took her first methadone tablet. We were surprised at how much it relieved the pain. Within 15 minutes her verbal and physical wincing ended and she was able to relax into her chair. We watched the first half of an opera together.
We did not expect Heidi this morning but she called about 9:30 and said she would arrive shortly. She made some changes in Mollie’s medications; mostly her methadone is taken twice daily. Methadone is a synthetic heroin and works well on bone pain. Heidi also thinks the cancer is eating into the femur and pelvis. Bone pain typically worsens and often is excruciating and bone cancer is an extremely painful experience. Other meds were also increased today. The new program is probably needed. Mollie is having more difficulty walking and the leg pain has been increasing.
The nephrostomy worked well last night while Mollie was sleeping. She slept for about 6 uninterrupted hours with almost no urinary leakage. We cannot figure out how one night is fraught with multiple wet trips to the bathroom and the next night is dry. The identical positions of the collection bags and tubing are consistent and as far as she can remember she is in no unusual body positioning. It’s a mystery. The pattern is she gets two nights of dry pads and bed and then a night of deluge like Noah’s flood!
Mollie’s friend Denise gave her a leg massage this evening. Denise’s training and skill helps break up much of the edema fluids. After her treatment the legs, especially the right one, became more flexible and strong. As she walked around Mollie was more stable and moved more fluidly. She even wanted to make dinner for us! It was a delicious scrambled egg, spinach and cheese frittata-like creation served with slices of fresh tomatoes. I’m so encouraged and happy to see her able to do things like this. She tells me she feels better contributing to life in the household.
Later that evening I read to her for an hour or two. She had asked me to refresh her memory from Grace and Grit how Treya had died. The last chapter of the book details the last 48 hours of her life and is filled with the exquisite love she is and the remarkable effect she had on those present with her. Emotionally it is a very touching chapter. Spiritually it’s a tender and evocative account of Treya’s dissolution into the vastness of emptiness with ineffable joy. As I read tears flowed from me and I had to stop occasionally unable to see the print until I cleared my eyes.
And there was a keystone in this for Mollie as she too approaches the end of her life. I don’t know what that is, but it was palpable in the room. We both recognized its presence.
Mollie had a difficult night with what appears to be a bladder infection. The pain of it made sleeping or relaxing tricky. The usual medications she is taking have little influence on this infection. She treated herself with colloidal silver several times during the night and this morning she reports there is improvement. There is less pain and indications the infection is waning.
Something is perplexing to us. With the infection Mollie felt like she needed to pee several times last night and as she sat on the toilet urine drained from the bladder! This should not be possible with the nephrostomy. How urine finds its way into the bladder from the kidneys which are no longer attached to it is mysterious to us. It’s of no consequence at this stage of life and disease but it does evoke our curiosity and elicits a few minutes of interesting conversation. I changed the nephrostomy dressing and inspected the tissue surrounding the tube insertions into her back. Cleaning and swabbing those openings I could see no sign of septicity or contagion. All the tissue and derma looks healthy and the contraption seems to be functioning properly.
This evening we watched a pictorial documentary on the natural world of the Pacific Northwest. Ariel shots of seascapes and mountains were highlighted by dialogue reminding the viewer of the interrelationships of all life. The scenery and filming were indescribably gorgeous. We sat transfixed at the splendor of flora and wildlife. I could hear Mollie sometimes remark softly more to herself “Isn’t that magnificent?” or simply “Wow.” I reminisced of the times she and I had visited remote mountain ranges and seascapes and how much we enjoyed sharing the glories presented to eyes, ears and noses. Realizing those junkets are now an improbability for Mollie I thought how lucky we are to be able to sit in my living room and still share part of that splendor on a screen with our eyes and ears. How lucky for all people invalid or convalescing to have a media which can take them out of an immediate limited environment and into a timeless world we share as humans with all life. No matter how isolated or immobile we become we still remain that which the entire universe is doing at this moment. I saw clearly in dropping resistance to immobility we realize we are the silent stillness which directs all life. Mollie knows. She truly knows the cancer destroying her body is the same animation which gave her this life.
Mollie had a very difficult night as urine continued its leakage soaking her body and clothing. She was up a few times to change and re-pad. This morning the bladder infection flared so the dosages of colloidal silver increased. Her edema has swelled the thigh more and she is beginning to drag that limb around instead of using it in normal biped fashion.
She was picked up at noon by two of her friends for a lunch venture. Her excitement and anticipation helped her reach into her energy resources. She is and always has been adept at finding sources of energy and communion. She wore her new skirt and top for the first time. I was so good to see her dress up and spend extra time with makeup like a school girl going out on a date. Their escapade lasted over two hours as lunch was noshed in the garden setting of a popular restaurant/nursery. Connections and conversations were decorated with strolling through the floral and arboreal backdrop. Writing this I’m beginning to feel snubbed and disregarded I was not invited!
Often people visiting or speaking with Mollie cannot believe she is ill or dying. The lunch companions remarked to that on first arriving here. It is a frequent observation. Her countenance and voice spill forth the radiance she is. What one sees and hears is the exquisite Mollie-ness which she has always emanated without effort. It is almost impossible to see illness through this aura of love and kindness. We see this natural beauty she is, it is and always has been remarkably luminous.
This outing was another goodbye to at least one of Mollie’s dear friends as she moves away in another two weeks. But the adventure lifted her spirits. Returning home she napped a few hours then dove into her computer with its cache of e mailings.
Last evening Mollie retired early tired from her outing or the excitements of the day. Finishing dinner outside she began fading in and out of sleep. As I hugged her goodnight outside her bedroom door I said, “I love you Mollie.” She said “I love you Michael. It’s going to be so hard to say goodbye to you.” The words struck deep into my heart. I don’t know how I can ever say goodbye to her. I only know I don’t want to.
We spoke this morning how we are already saying goodbye to each other. The love strengthens each day and with it so does the grief of missing. The anticipation of loss, not death, is frequently in awareness. Mollie is durable with strong organs and a family history of longevity, especially the female branches of its tree. The possibility exists she could last much longer, but whether she dies today or next year the awareness of loss remains.
So it was not entirely pleasant this afternoon perusing the literature of cremations available. It was a pragmatic discussion best investigated and not procrastinated too long. No specific decisions have been made yet. Originally, we had thought her daughters should make those decisions after Mollie is gone. That appears impractical from this vantage for a number of sound reasons. I think it will be up to me to provide the details and follow through with the necessary steps for cremation. I am willing to do that. The ashes will go to her daughters at the proper time. It is striking to me as we discussed cremation options how the mind focused itself in the quantifiable world of choice while moving away from the emotional one of loss and grief.
Heidi changed Mollie’s meds again. As the bone pain worsens more methadone is prescribed. Also increased were the diuretics to help alleviate the edema. Typically, cancers metastasize attacking organs like lungs, liver, kidneys, heart and brain. As Heidi checked Mollie’s vitals this morning she reported the lungs clear. The heart appears unaffected but there is no way to know about the others except we know the right kidney functions poorly. Later in the afternoon Denise gave Mollie another leg massage. The results softened the skin and muscles of the leg and she has more range of motion, especially in the knees and hip joints. However, this relief was temporary. Within a few hours Mollie’s legs were hardening and the stiffness returned. There was hope and excitement then another disappointment. More surrendering for us.
The increased medications seem to be making Mollie more spacey. She falls into a semi-sleep sometimes in mid-sentence while speaking. We attempted to watch a movie last night and about every 10 minutes she would wake and ask me what was happening in the film. Before I could tell her she was back into semi-consciousness. We gave up and Mollie went to bed early. I spent the rest of the evening creating an Excel spreadsheet for her medications. It’s now too complicated for me to rely on memory.
This morning Mollie’s legs are even harder and stiffer. She has trouble moving about. We had a discussion about whether to continue with the massage as it moves the edema fluids up the leg in hopes capillary action will carry it to the kidney to be expelled. That does not seem to be happening. The fluid remains stuck in the thigh and pelvic area. A stronger diuretic has been prescribed and should arrive today. We hope it will succeed in clearing this fluid from her body. Getting into the car yesterday I had to lift her right leg from the ground to the floorboard. The core of the problem seems to stem from the hysterectomy which removed about 75% of the lymph glands in the abdominal regions. (The medical term for the condition is lymphatic edema or lymphedema.) The edema is a direct result of the lack of toxic cleanings provided in part by these glands. It is also probable some of the remaining glands have been attacked by the cancer and function poorly or not at all. The lymph nodes also play a crucial role in the immune system. The research I have done indicates Mollie may not be able to walk if fluids are not reduced. Already it is becoming very difficult as the thighs swell more, especially the inner thighs. Whether this happens or not the toxins will continue to weaken her immunity to infection or virus. Here is another in the ups and downs of Mollie’s hospice life. We improve one condition then another materializes. So, we address the latest one. We sense an energy beyond us keeping life dynamic and fluid. There is no stagnation or capitulation happening here. It’s like the stagnating fluids in her body sprout a contrasting harvest of new produce. Instead of acquiescing Mollie receives the challenges as gifts from the source of life. In this paradox, nothing stays still; except who she truly is.
Yet bless her heart. As we had this discussion this morning as she finished her breakfast on the patio. She still enjoys the blessings and beauties of living. “I am so happy” she said, “Even with all this going on in the body I am so alive and happy.”
Dylan Thomas is a poet we both love. We are fond of the words in a poem of his; “Do not go gentle into that goodnight/ Rage, rage against the dying of the light.” That is one perspective on dying, a common one; certainly, a valid one. Another perspective is Mollie’s. “Go gently into that goodnight/ Befriend, embrace the dying into light.” Mollie’s is much softer, easier and allows for that which eventually happens anyway. Some people wonder why she is not fighting the cancer differently, more aggressively. I suspect her reply could be something to the effect of: death is the marriage consummation of the perfect lover squandering itself in the virginal prolificacy of life with a gentle goodnight kiss of dying. Or, it may be better expressed in another title of Thomas’ poems, “And Death Shall have no Dominion.”
It’s heartening to have these conversations with her. There still remain many moments in the day when Mollie is fully present and conversant. When they arrive the cascading of grace increases its outpouring and the magnificence of Mollie in our lives redoubles. I say our lives because it occurs in also yours no matter how far away you are. Whether you have the good fortune to see her again in this life, please recognize her presence is with you. It is you. Her grace is catapulted to you by her gratitude for you being in her life.
Sitting on the porch this morning sipping our respective coffee and tea Mollie began to speak. “What would you like to do today?” I answered “I have no plans. I’m here for you. What would you like to do? Yesterday you mentioned you’d like to go to a bookstore.” A few minutes went by and she said. “It feels strange to me to have you so dedicated to me and my needs. I’ve never had that in my life. I’m so touched someone could be there and tuned in to what’s going on in me.” I replied, “I think that’s what everybody really wants. We not only want to give and receive love but we really are looking for someone to be totally tuned in to us having our inmost knowings and longings recognized and appreciated. We may be afraid to say it but at the bottom I think most of us want that from everyone. In our culture, we have a tendency to ridicule this as co-dependent or neurotic so we keep it hidden.” And Mollie, “All my life I have been the one taking care of others. Even as a child my mother was very ill at times. I remember having to give her shots when I was 8 years old. And I had two younger sisters I had to look after.” I answered, “Yes, since I have known you, this stalwart identity of caregiver, teacher, mother or whatever has been primary. I saw many of your friendships were constructed on this stalwartness. Now I see it changing. Receiving and giving identities are; I don’t want to say coming more into balance, but more like they are melting, fading into nothing or the same thing.” “Stalwart is a good word for it. I think you’re right. That may be why it feels strange. The stalwart energy in me is emptying.” she said. “But I cannot describe how wonderful and heartfelt it feels to have you so attuned and dedicated to me. It feels so good.” “That’s exactly what we all are seeking” I said.
Now Mollie has arrived at a juncture in her life where she needs to receive caregiving instead of giving it. The dominant and stalwart persona is eroding. It’s a new adventure for her and it has not been easy to drop her resistance to receiving while surrendering much of her longstanding personage. There has been a melting away of an identity. For me too. An identity of an unhindered man living most days spontaneously in unscheduled personal caprices has melted in favor of giving everything I can to someone else. It too has not been easy. But our dropping of our respective personas is as natural as blinking. The blinking has cleared the eyes allowing us to see something we had lacked the courage to notice or admit before.
It may be the path of conscious dying is helping us dissolve our deep desires which we have kept hidden from ourselves and others. All my life I have wanted someone to be so attuned to me they could admire most of my thoughts, needs and moods with fondness and appreciation. I wanted someone to make me their first priority in life so I could rest completely and honestly in it. Actually, I wanted this from everybody. It is the innermost and private yearning at the core of my self-importance. Of course, the shame of such a desire kept me from admitting it openly and the opposite persona of “I need nobody” was projected. The real craving was pushed further from consciousness becoming clouded by more shame and unworthiness as the years passed. Something similar may have been part of Mollie’s life too. She discovered how to handle it differently than me.
To be one who needs reinforcement of self-importance carries the stigma of neurosis and fixation which can beget social excommunication and anathema. We try to keep it out of sight. This secret desire gets pushed into the dark dry well of unworthiness eventually to seethe with rancor and retribution. Here with Mollie facing death, these renunciations are being accepted as our human-ness as they become exposed in the sunlight of having nothing left. The well into which we had cast off our disagreeable spawn of concealed desires does not exist. The gift of death illuminates the orphaned shadows tossed into the well which have remained abandoned and repudiated. Shame, un-lovability or unworthiness are revealed to be the chimeras they are.
Maybe this is an opportunity for all who are dying if they muster the resolve to look sincerely at themselves without attempts at explanation or justification. It may be the most important and final gift of life. It seems like it to me and it’s certainly evident here these last few weeks. This is not a new idea. It is the nucleus of every religion and spiritually and at least as ancient as written language.
I am so lucky to be presented with this opportunity and not being the one facing imminent death. Mollie’s openness and sharing is presenting me one of life’s most treasured offerings early. At the beginning of this Blog I stated I wanted to know of Mollie’s subjective experience of dying. Now I see dying as living. I am life. It has been delivered in a package I could not have anticipated or imagined. It’s extraordinary in its simple ordinariness.
In the ordinary world, the fact remains Mollie is dying. Each day she seems to slip a little more into that goodnight. There are ups and downs each day and week. Despite the extraordinary simplicity showering through the outpourings of grace, there is still sorrow knowing the fact remains Mollie is dying.
No Blog yesterday. Mollie had some visitors which took much of the day. She was whisked off to purchase some shoes returning an hour or so later fatigued. She managed to find and purchase some sandals and a pair of clog-like shoes she finds comfortable.
She needs good shoes as her gait is more unstable than ever. It is not only the right leg causing this. There seems to be some equilibrium difficulties in the ear or brain. Also new is the wearing of reading glasses. Until a day or two ago she read without glasses. I have seen her sit reading for several hours at a time sans specs. She did insist on good lighting but now she cannot see the print clearly without magnification. This sudden onset has shocked both her and me. “Oh god, my eyes have been so good till now.”
After Heidi left today Mollie began to make herself some lunch. Watching as she did so I murmured some repetitions Heidi had intimated. The diuretics are extracting fluid, water, not so much from her legs but throughout the body. Her arms, torso and face are thinning. In the middle of opening some beans she had Tupperwared in the refrigerator she suddenly said, “I want to whine.” After a short pause came more words. “I’m dying. I am facing the end. It is coming. As I face it more I’m not ready. But this body is going downhill and it’s fast coming to its end.” It wasn’t the words falling from her mouth which caused a pall in the air between us. It was the feeling of hopeless inevitability flooding over the words drowning them in the poverty of resignation. “I’m facing death and as it approaches there’s a closer realization of it. It’s harder to face.” Of course, she wants to whine. I encouraged her to do so. So, she did some more. In my heart, I felt the clash and din of capitulation and sorrow. It felt cold and quiet like winter midnight in the desert.
In that desert, there has been an oasis we call Mollie. Now that one will leave us. The winter midnight in me is not my grief or loss. It really has nothing to do with me or anyone else. It’s only some imagery of mind and heart. There once was one called Mollie who lived here for a while and then was gone. Like all of us. Like all who have already left. Those departed appear to me like sphinxes windblown and eroding in the desert sands of memory. To me there’s something lonely about this. Viewing Mollie’s life, or the life of anyone I have known or loved, I see as an unexpected phosphorescent flash across the sky of life like a fiery meteor. It bequeaths its light in afterglow. All the love she shows, her many accomplishments or leaving so much to the world and its inhabitants does not warm the winter midnight in my mind or heart. I recognize this is only another passing image, it’s a sense I’m trying to convey in metaphor; it changes nothing. There will be a time when once there was a Mollie and now there’s not. So it is for all of us. It’s exultant and horrifying. And beautiful.
Watching Mollie, I’m beginning to see something important. I have written about the incidents of letting go and surrender. Her friends, children, events, and too many letting goes have been surrendered to the process of dying. At this stage of her life the most difficult challenge is releasing her independence. Depending on others, in her case me, is something which is difficult. I try to be especially sensitive to this encouraging her to do as much as possible for herself. Sometimes her endeavors create more clean-up chores for me than if I had done it myself. Fixing herself breakfast or lunch is sometimes an example. But I can see how important it is for her to do as much as she can for herself not depending on me. Giving up her independence is the hardest and perhaps last surrender. I can imagine how difficult it would be for me. I might cling to it–resisting letting go forever.
Denise gave Mollie another massage today concentrating on the right knee which had become swelled and stiff. It was much more flexible and smaller when she left. A walker arrived today. Mollie discovered it is perfect for exercising her legs. Not walking but taking weight off her legs by holding the contraption with her arms lifting her legs. They may be lifted with high knee bends or swung with a kicking motion forward and back. I have been aware of her instability and balance loss. I feel more confident with her using the walker. The probability of falling is decreased.
Last night Mollie remarked “I’m not ready to go.” It’s clear she is not. In her lucid hours, she is still fully present and articulate. Yesterday we had a conversation about how we humans attach an emotion to a thought about our self or others and it then becomes a perceived reality. It’s how the world as a dream is created. To explore this took sustained attention, introspection and clear-headed awareness. Mollie demonstrated all those things. How could anyone with such lucidity be ready to go?
I was away for a couple of hours this afternoon leaving Mollie here alone. Returning home, I received a graphic depiction of part of the events while I was away. Due to arrive today was some clothing she ordered online. The delivery person called wanting to know if anyone would be home as a signature was needed to complete the transaction. Mollie replied she would be here. Later Mollie’s colostomy erupted filling the bag with waste. As she emptied the bag into the toilet she discovered the entire bag needed replacement. Discarding the old one she began, with exposed stoma, cutting a new bag to adhere to her abdomen. While doing so the intestines decided it was an opportune moment to discharge more waste. As she positioned herself over the toilet the doorbell rang! She did not want to miss her delivery of new threads. Grabbing a towel to cover the stoma and collect waste she made her way to the door, signed the proper documents and returned to the bathroom to finish the job. More waste arrived before she could install a new bag. After completion, the clothing she was wearing needed to be removed, rinsed and later laundered along with the towel that was unable to collect everything excreted. As she related this to me when I returned home I could not help but think “It’s déjà vu all over again.” How could she be ready to go amidst such excitement and creative opportunities?
Last evening, she could barely stay awake through dinner. There had been a flare up of leg pain late in the afternoon and she had taken some stop gap medication to quell it. After cleaning up the kitchen I put on a mindless comedy show for her to watch as she requested some distraction. She immediately fell sound asleep in her chair. I switched off the show in favor of some classical music as she continued to slump further into the chair and deeper into sleep. It was a few minutes after 8pm. About 9:30 I woke her. We said goodnight and she went off to bed.
Mollie slept until almost 8:30 when I awoke her, well past her usual waking time. I had been up a couple of hours and had not heard her since midnight. Wondering if she had died in the night I sat quietly feeling a sense of relief coupled with a fear of finding her body in her bed. Deciding to open her door the fear became stronger as I walked down the hall and put my hand on the door knob. Once I touched the door the fear vanished. As I looked in I could see the covers pulled up to her chin leaving her face un-obscured. Her eyes were closed. After a few seconds, I saw them open and she turned slightly to look at me. She got out of bed remarking how late it was; like the Mad Hatter.
She was acting disoriented and unstable on her feet. Tea helped a little and so did some breakfast. Heidi arrived about 11 and noticed the disorientation also. I do not mean to imply Mollie is unaware of her state. She is. One of the first things she said to me after her arising was “I’m really out of it. Things are sort of spinning around and I’m feeling like I am ungrounded.” Often, she mentions this state before I notice it in her. In a conversation Heidi re-confirmed my role now must be primarily concerned with Mollie’s safety. She had told me that before but today she reiterated it with more emphasis. She said it will continue to become more important I pay particular attention to it. Last evening after dinner she began to fall asleep in her chair. As she slumped I was concerned she could fall toward the table possibly hitting her head on its corner. I awakened her and she sat upright. I also see as she walks about she could fall. Assuming she does not hurt herself and is conscious I have no doubt I could lift her to her feet again. But a fall always carries with it the potential for injury. It would be best I could catch her before she hits the ground.
But all those are just things we will deal with should they arise. Heidi and I speaking of it is a redundancy. It’s obvious but I’m grateful for the reminders.
Later in the afternoon Mollie again remarked “I’m getting tired and fed up with this dying.” Most of her conscious attention is now focused on the physical conditions created by the cancer. She must often clean herself from the discharges. The past few days there is an increased amount of blood. The catheter and colostomy apparatus needs emptying, cleaning and changing frequently. Attention must be paid to them constantly. Then there are the pains. New ones are showing up weekly which must be addressed with different medications or patches. The edema continues to cause walking difficulties which then require more of her energy to move about. I can emphasize with her. If I had to expend so much of my time, energy and attention to all these things I would be fed up with dying too.
And I am. Not dying, fed up. The Mollie I know is here less and less and I would prefer to have her around more and more. Instead of animated conversations and interchanges we must address what goes into and out of her body in attempts to stave off pains, edema, urinary and fecal output, along with a multitude of satellite conditions. Although we still have much “quality” time together, I would prefer more of it. Although I’m probably not dying, I too am fed up with this dying.
And it’s beautiful too. What a paradox! The fullness of human experience coalesces each day, each moment, with unfolding angst and exultation.
Mollie awakened this morning shaking more than usual. Her arms and legs palsied with uncontrollable motions. I made her some tea and carried it out to the deck for her. She took some medicine rubbed into the wrists and under forearms which helps. Soon the shaking subsided a little but not completely. Today too there is an increased blood discharging.
For the past three days, there have been significant amounts of smoke in the morning. A forest fire about 40 miles away sends smoke this way in the early downslope drainage breezes. It has been so dense the local municipal airport required Instrument approaches and takeoffs only. In the afternoon, the breezes shift to the typical upslope movements and the air clears for a few hours in the evening. The smoke has caused Mollie and I both sinus congestion. It’s a good thing Mollie’s lungs are clear, and not afflicted. Her morning sits outside for tea and breakfast would be much more pleasant without the pollution. But with the late afternoon clearing evening meals are enjoyed outdoors. As we sit munching our dinner blue jays line up on the railing a few feet away awaiting their chance to pounce on our plates flying off with any morsel they can hijack. They have become especially fond of chicken and any pasta they can get their beaks on.
Old friends of Mollie’s, Glenna and Gene stopped by today. Knowing it may be the last time they see each other in life was heart wrenching for me. How can one say goodbye to someone they have known and loved for three decades? Glenna was her friend long before I met Mollie. They had lived together in Albuquerque for a few years. I don’t remember anyone being this close to her for so long a time except her daughters. Although Mollie was experiencing a difficult day physically she was able to keep up a conversation with them for a while. It may have sounded like a normal conversation but under the words was the promise of love’s endurance and the gratitudes of life’s voyaging on the earth through time’s currents as one leaves another for the sea.
Last evening, we both were tired. After cleaning up the dinner dishes I wanted to sit quietly, relax and with a little good fortune head to bed early. Mollie started drifting in and out of sleep immediately after finishing her dinner. It was barely dark when we sat in the living room so I told her I would read to her for a while. Selecting one of my copies of Rumi I began to read selections to her. After 10 minutes or less I saw Mollie was asleep. I continued to read for another hour to her. She would semi-awaken periodically opening her eyes halfway to glance in my direction. By the end of the hour I was ready to sleep. Mollie was roused, performed her pre-sleep ablutions and we retired. She told me “I know I was sleeping as you read but I heard the poems. Thank you for reading them out loud to me.”
I like reading to her. It feels like a way I can provide at least a little comfort.
The shaking or palsy of Mollie’s body is increasing and no longer limited to the arms or legs. In the severe attack, even parts of her torso will show the vibrations. There have been incidents of the entire body trembling for a few seconds. Fortunately, the medications she has for this usually quiets her quickly. Often, I can recognize the onslaught of an attack and deliver the medication before the shaking becomes too bad. When she naps, like last evening as I read to her, her hands and arms will make motions like someone speaking using their hands as secondary highlighting. Her fingers often intertwine in kneading motions while her palms rub together in semi-circular motions.
The upside is the colostomy and catheter still function as advertised. She had a shower today. Since the dressing around the nephrostomy tubes was wet I changed them along with cleaning and sanitizing the holes where the tubes insert into the back. The derma and tissues look healthy as far in as I can see and there is no sign of infection.
Absent today is the intense pain in her right femur and pubic bone. The grinding serrating pain in the rectal area is also minimal. There has been no need of stop gap medications. It’s a mystery how these things come and go. There has been much less fading in and out also today. She has remained more alert despite the tiring chore of showering and bag changing.
I sense a change. As Mollie requires more and more attention I find myself wearying more rapidly and needing more rest. Not sleep so much as a respite from the vigilance and what are now more efforts to help Mollie with things she was able to do for herself until recently. She requests more of my assistance. It’s also getting more difficult for her to make simple decisions. Today she reached exasperation and the limits of fatigue trying to put on undergarments around her catheter bag. She could not understand how to solve the dilemma yet the solution was obvious. Bless her; she just could not see it although she had successfully navigated it several times before. That’s a direct result of diminishing energy levels clouding the thought process.
I cannot say what that change is I’m sensing. I’m not even sure whether it is only inside me and my perceptions or if it is something in the external world with Mollie. I recognize some of this is my projections. But changes are occurring in both of us. I am finding at the end of the day my level of vitality has ebbed to the low tidal marks. Earlier bedtimes are more frequent for me nowadays too.
I remember what I thought this picture of caretaking Mollie would look like when she arrived here. Today that picture I realize had an unrealistic perspective or vanishing point like an El Greco painting or an M.C. Escher drawing. The needed pieces of caregiving Mollie do not fit into what I now realize was a contrived assemblage. Specifically, I pictured Mollie, even if bedridden, retaining her mental and emotional faculties intact or with little change until death or entering a coma-like state. That’s how it was for my father, the only other long term dying process I witnessed closely. This is not the reality as the cancer and/or the drugs change the chemistry of her body and brain. I had not expected or suspected her mental state would deteriorate so. Maybe I refused to acknowledge it or did not want to face it then. I am cognizant that facing and working with this condition is now the most fatiguing aspect of my role. There are still many moments Mollie has her mental and emotional bodies intact, as well as their expressions. Then I know I’m with the Mollie I have known. By comparison watching her body deteriorate is relatively unchallenging for me. But watching the known persona and personality erode is something I was not prepared for. It’s nothing like learning to clean wounds or administer medications. I don’t think it can be taught; only lived. In fairness, I’m not sure there is a way I could have prepared for it.
Doubt creeps into the mind now as I wonder what will be required of me soon and if I shall be up for the task. I ask, “Since changes are happening which I have not anticipated realistically, will I be able to sustain the requisite energy levels and be capable of her caregiving needs?” Of course, I don’t know. When I simply hold the questions quietly they dissolve into chuckles. Is that the cascading of grace I hear? I must remember to keep it in earshot.
Mollie was feeling especially sad this morning as she approached asking me to sit with her on the couch and hold her. “I’m feeling very fragile. This is so hard for me. I’m dying and losing everything. I have no strength and collapsing into helplessness and that is so hard for me. To be helpless, to depend on someone else makes me just want to cry and I cannot bring myself to do it.” Resting against me she said “I feel your warm body and it’s such a comfort. It’s vibrant and strong while mine feels weak and helpless. I know it gives me something and I don’t have a word for it.”
I wrote earlier in this Blog about how difficult it is surrendering independence; maybe more so for Mollie than many others. In the time I have known her, I cannot recall her ever collapsing into helplessness. Falling into total fatigue has occurred but not anything close to a complete letting go. I have sensed its presence before and would like to think I gave her space or opportunities to do so. But her strong sense of strength and independence has always, until recently, prevailed. I saw many of her relationships built on this trait which allowed others to collapse and let go around Mollie. I did not notice reciprocity with those friends even though they probably offered it to Mollie. Today indicating she wanted to cry as I held her she could or would not. “I don’t seem to be able to do so Michael. My tears flow more easily when I see beauty; like the blossoming gladiolas and other flowers on our fireplace hearth.” Sometimes a good cry is what’s needed and sometimes there just aren’t any tears.
A long nap early changed her perspective somewhat. She put on a new skirt which arrived in the mail yesterday, put on some makeup and decided to make the best of what remained of the day. She sent out the weekly Blog to her friends then finished reading a book which had captured her attention for the last week. She kept sharing snippets of it with me periodically through its reading. The characters in the novel live in a small fictional village in Mexico or Central America. The cultural perspectives on their lives is different than the ones experienced by many of us North Americans but the human side of their relationships and interactions exhibit the same strengths and fragilities of all people. I am amazed how certain themes repeat themselves and show up in our lives at significant times.
The shaking continues. We looked on the web about it and there were some indications these trembling could develop into potential seizures. We had a conversation about what needs to be done should one occur. Mostly we are concerned at the cause of these shakings although it is a moot consideration. Most likely the nervous system is being damaged by the cancer, possibly the lumbar spine since that seems to be the location of the cancer’s germination. But it could also be from toxins from the cancer or drugs infecting the brain.
Sleeping later than usual this morning Mollie dressed herself in some of her new clothes. It’s good to see her doing this. It brings a new or different perspective on the day with a renewed energy and vibrancy to her. Applying makeup also has become part of her morning routine even though there are no plans to exit the home. Until recently she used her facial cosmetics only when we sallied forth into the community or visitors were due. All this gives her a different ‘edge’ and it appears to me she feels more alive and engaging in life.
And we did get out on a spontaneous jaunt to our Produce Market. Mollie looked beautiful especially dressed in her fine new threads. She even enjoyed a cup of real coffee and a blueberry scone there. We skipped any circuitous routes home as the air is still smoky and visibility is poor. Headlights were ignited by most cars even at midday.
The right leg continues its edema expansion and hardness. Today the knee could barely bend and there was a bluish tint surrounding the patella a few inches in circumference. There is some type of capillary action going on beneath the surface similar to a bruise. I massaged the leg placing special emphasis in the knee and its ligaments which freed up some movement. It did not decrease in size. Also, the edema is beginning to “weep” in both legs. The epidermis is now dry, scaly and showing signs of developing boils or sores. Although the diuretics seem to be producing more urine which indicates more fluid is being extracted than ingested, if the legs are smaller it is barely noticeable.
I write these descriptions for unknown reasons to me. Under the changing conditions and challenges of this adventure there remains an unchanging apex to it all. More and more I see the flux and flow of Mollie’s cancer I see it as metaphor for life; at least my life. As I reflect on my past I see flux and flow with different challenges and conditions. Underneath I also see that which has remained unchanged. Many times, these last months with Mollie I have remembered a particular day and feeling I had when I was 4 years old. Standing by a door looking outside I had a very vivid impression and feeling of who I was. Not as a person or personality, but as a being. Today that same impression and feeling remains. It never has changed. I see that about Mollie these last months too. The challenges come and go in the mutability and fluctuations of this disease. It all occurs in something larger which is not changing.
In no way is that meant to minimize the horror or repugnance of this disease. It’s an awful experience for any human body to endure. In the early pages of this Blog I wrote of how Mollie abides in a full realization of the Self. It’s not that Self which has cancer, it is her body and the consciousness which is enduring it is her self, small s. That is the self which does not want to die. That is the self which refuses to release her independence. That is the self in which she lives with the horror and repugnance of this heinous disease. Being in this with Mollie I know there is no certain avoidance of this for any of us short of suicide. I’m reminded of the suffering many saints and sages endured no matter their personal consciousness level. Jesus died a horrible death. So did Ramana and Papaji. Recently I recollect the painful waning body of John Paul the 2nd.
There was a time I believed one could reach a level of evolution where anything could be endured with tranquility, peace of mind and in elegant grace. Now I see what I refused to see before. What occurs in one’s body in no way reflects or affects one’s evolution or enlightenment. These last months here with Mollie have helped me see some beliefs I had were creations of my ideal world, a dream world. And a hopeful belief I might escape such horrors. Like all beliefs, they are not true.
The past few mornings Mollie has been sleeping later. This morning she arose at 8:45 and spent the next 45 minutes in her bathroom dealing with blood. There have been more clots in the discharge when she first gets out of bed. She tells me there is nothing alarming about this but what I see on the bed chuks and waste padding appears to be significant. I understand from the nurse there is nothing to be done about this. Accompanying the increased bleeding is a paler complexion and she is more easily fatigued. After eating her breakfast, she fell asleep at the table before finishing her tea. She had been out of bed about an hour and a half.
After Heidi’s visit Mollie went to the chaise lounge to elevate her feet above her heart. Heidi thinks much time spent this way may cause some of the edema fluids to drain from the legs. Mollie fell asleep in this position for a couple of hours and was very difficult to awaken and get her upright.
It took another hour working with her to bring her consciousness back to the present. She was very disoriented and unstable. At dinner, she kept falling asleep as she moved her fork toward her mouth.
Yesterday was a hellish day for me. Visiting the dentist in the morning she informed me I needed an immediate root canal to address what I thought was a minor cavity. She made an appointment for me later that afternoon. I was reluctant to leave Mollie but was told the pain from the work already started would be very severe in a few hours. “Just what I need” I thought, “If I have to take medicine for pain while being responsible for administering pain medications to another.” Fortunately, Heidi was here between my dental visits. As she was leaving her car failed to start at exactly the time I was to leave. She phoned her towing service, came inside wait, and I left for the endodontic appointment. I felt much better about leaving since Mollie would be with Heidi until her car was fixed.
Returning home is when I found Mollie asleep on the porch with her legs elevated and spent the next hour and a half trying to bring her back to present consciousness. It was a challenge for me as my body was in shock from the dental work. I wanted to be quite and recover but the situation did not allow for that. When she began to “come around” there was a restlessness and nervousness I had never seen before in her. She would pace about as best she could asking questions repeatedly. “Where did these peaches come from?” a question asked in reference to fruit we purchased the day before. Several times this and other questions were repeated within a few seconds of each other. By the time Mollie was ready for bed she had recovered somewhat and I felt comfortable enough with her situation to go to bed myself.
Sleep for me last night was minimal. I kept an ear open for Mollie in case she needed help and the pain from my surgery prevented any real rest.
Those are the external details. The internal landscape for me was one of doubt approaching overwhelm. Through much of the evening there was internal dialogue questioning if I would be able to handle this situation much longer, especially as Mollie’s mental state deteriorates. The best description I can give of that state is she appears like a very drunk person. Not belligerent, but passive, unable to speak clearly and mumbling to herself. Of course, her balance was mostly gone. I needed to guide her every step and support her weight. I wrote before of the little experience I’ve had with Alzheimer patients. I’m recognizing some similar traits in Mollie now.
Today is Mollie’s 76th birthday. It also marks a transition point in her disease. Heidi said today Mollie is in the “transition” state. Presumably that means between living and not living. Yet cards, phone calls were plentiful. Facebook pages were decorated with many well-wishes and Happy Birthdays. It’s splendid to see how many people are in her life she loves and love her. Many of the well-wishers I have not met and some she has not met. In a mysterious and miraculous way, we are all friends. I for one truly celebrate her life and give many thanks for the good fortune to have known her.
Although today’s marking of another plateau in her last journey it remains a day of celebration of the life of the one we call Mollie Summerland. She has lived her life well.
Last evening about 7pm Mollie could not be awakened from her recliner chair. I decided to let her sleep there all night despite having a new hospital bed set up for her in the big living room. I camped in a recliner next to her and tried to sleep as best I could. I arose periodically to give her medications when I heard her shaking agitations beginning. Someone needs to be present with her all night now and alert to those signs from her body. This new “transition” state as Heidi calls it will mean Mollie will be sleeping most of the time. There are new meds which will help insure sleep.
Yesterday morning Mollie, Heidi and I had a long and honest conversation about where she would spend her last days. She wants to stay here and I promised to do my utmost to keep her here. The other realistic option would be a nursing facility nearby. I was forthright about the challenges ahead for me and confessed I did not know if I would be able to meet the upcoming obstacles. Mollie also promised to be as present as possible and alert to what difficulties she may present to me. The last two nights have been poor rest nights for me. The first night, her birthday eve, I slept for perhaps 30 minutes total. Last night was a little better once I moved out of the chair to the floor. I slept about 3 hours.
And Mollie was asleep for 18 hours with only minor interruptions for me to insert sub-lingual medications. Yet she murmured and muttered much during her sleep. Today a nurse arrived I hired and we moved Mollie to her new hospital bed, cleaned her up (she still bleeds) and tucked her in some silky sheets. She has fresh clothing on and can see out the front door to the porch where her beloved blue jays await morsels from her hands. She also looks out the east window on a large camellia bush as tall as the roof.
Friends call and tell me this is so hard on me I should get more help. What is hard for me is saying goodbye to Mollie even though most of her is already gone. As I walk around the house and see her flower arrangements or the last book she was reading I burst into tears. Hanging up some of her clothing I had washed this morning grief exploded in me as I saw her clothes hanging there. Yes, I miss her already. How is it going to be when she is really gone? You too, you who have also known and loved her, how will it be?
Not able to imagine an answer, I sat reading Rumi to her this afternoon as she slept.
This evening was the first time since she came here in April where I only fixed dinner for myself. It felt entirely different although I have been fixing most of my meals alone for years. There was something about not pouring love into the food for Mollie. Love was still put into the food but it was only for me instead of us both. Something felt out of synch with that. As I watched her in her bed I could not help but feel her absence as I chopped the salad. I ate on the porch where if she opened her eyes she could have seen me. How I miss her sitting across the table from me!
Exhaustion wins out tonight. Tears have erupted spontaneously many times today and almost always as I pause at the side of the bed and speak to her. I have hired a nurse to be with her tonight at the house as I retire to my bed for rest. Carrie may arrive tomorrow. It will be an added help to me and perhaps whatever needs to complete between those two will occur.
I have spoken everything I have to say to Mollie. Most of it was done while she was still conscious and cognizant these last months. I thanked her for how she has helped me to grow these years and loved me with tender generosity. I’ve confessed my sins to her and offered apologies where needed. I offered forgiveness for her misdeeds. I feel complete. But that doesn’t I’m ready for her to leave. I pray it’s not the end.
And always there remains more I want to say and hear.
I had a good sleep last night in my own bed. Even as tired as I was I awakened a few times in the night crying. This morning Mollie was resting but it is becoming difficult for her to breathe. After the night nurse left I gave her some meds and cleaned her up. There is still blood leaking.
Sometime in the last 24 hours something shifted in me. Mollie no longer needs my strength and solidity. I have let go of that identity. Returning from the Adyashanti retreat the first week of May I saw and she told me how much she needed and depended on that strength. Even though Carrie had been here a few days to help her there was a huge expression of relief as I walked in the door and she saw me. At that moment, I knew I would be there for her until the end. All that was needed was to stay open to grace. Grace would provide it in abundance, a cascade.
Now I will keep her comfortable with meds and such as she requested. My role is perfunctory. This shift in me has opened another room for love. It’s difficult to think there could be room for more but it has happened. With that room, there has come more grieving and sorrow. Of course, that’s love too. I am collapsing into it.
Carrie arrived this afternoon. She plans to be here until her mother dies. She is hoping Mollie will return to consciousness sometime before she dies to speak with her. I promised Mollie I would keep things as peaceful here as possible. Mollie did not want a group around or any rituals or orchestrations of the process. She requested silence and to keep her as comfortable as I can. There was an e mail this morning from Emily where she had written and played a violin solo of a piece she titled “Mollie’s Song.” There were also some beautiful words written in the mail. I read those words to her then played her the song. What a perfect gift of love! Thank you, Emily.
Our beloved Mollie died today about 2:30 pm. Carrie and I were with her when she left. I put some roses around her head and read her some Rumi. I called some people to tell them and we sat with her. We were with her for a few hours and then I called hospice. A nurse was sent out to confirm the death. The nurse helped us dress Mollie in her favorite new skirt and top then Carrie brushed her hair and applied some makeup. Mollie looked beautiful. Later, I kissed her one last time as the mortuary folks picked up her body at about 7:30 and took it to be cremated. Only memory and love remain.
Here is my last gift given to her on her birthday August 22, 2013:
The New Year’s first snow
How lucky to remain alone
At my hermitage
All gifts, except the gift of love (which is not ours to give but only to receive), are fleeting in passing memories of time. This birthday gift of words (which are all I have to give) are no less fleeting but carry memories of received and timeless love with you.
Being here with you in what may be your last year of life I see this Basho quote above describing the Yin and Yang of the years we shared together and apart. By next year’s snow I may be here alone in my hermitage with timeless memories of how lucky I was to have known you.
It contrasts now. There is no snow but heat. And I am not alone but here with you. Still, what remains:
How lucky to be here with you
At my hermitage.
Your presence here is a gift of love. I pray I receive it well.
On this your 76th birthday which could be our last, we share the freedom for which you have been born and lived. Like love, it can only be received.
In this living dying, each fleeting moment is birthed with gifts which redouble on that we name our self. Each moment, being born and dying becomes a timeless birthday presence. Each day a New Year, with snows of virtue receiving love’s undying gift.
How lucky to be here with you
At this hermitage of love.
In Honor or Your Birth
How to end this Blog? It has been a journey of growth. What you have gleaned from it may be different than me. I’ll start and end at the beginning. I now have a subjective experience of death and dying. It’s simple. Everything must be surrendered, everything; especially identities and beliefs about ourselves or life. I watched Mollie do that for these months. On her birthday as Heidi told her she was transitioning Mollie took a breath turning to me she said, “Well Michael, I guess this is the end.” That was our final intimacy, that one sentence. The final surrender happened in that moment, the willingness to give up everything. I have tried to describe some of those “everythings” in this Blog. She let go of it all, including me. The feeling with it was one of total completion. Now all that remains to you and I and all who knew her are memories and love. In the end memories too, will be surrendered.
Only the Cascade of Love endures.
Though lovers be lost love shall not;
And death shall have no dominion.