Telling the Truth

July 13, 2018

I was walking the dog this evening when I woman I barely know stops me to express her condolences. But it rapidly becomes clear that what she really wants to say is that her husband has just been diagnosed with pancreatic cancer.

“Oh, I’m so sorry,” I say, “I know what kind of a strain that can be.”

“Tell me,” she says, “tell me what it’s really like.”

I am a bit taken aback since no one has asked me this in exactly this way, and I know she is asking from a place of real need, a place of real questioning.

As I continue my walk home I realize that I haven’t yet told the truth, or at least, not the whole truth as I now know it, of my own experience. For truth, like everything in life, has many layers and many permutations. It changes and grows as life reveals itself. I’ve been waiting for the right time, and now it appears. For more than two years I’ve been telling a partial truth but it is only now that I can begin to tell more of it. I promised Michael that I wouldn’t say much of this until after he was dead and I have honored that promise. But I have to tell the truth, for what good is any writing if the truth isn’t told?

For the past thirty-five years, I have been Michael’s partner in relative health and then, over four years ago, I became his partner in mortal illness. And for more than two years, I am his caregiver. Endless trips to the doctor, endless chemotherapy treatments, endless time in his hospital room, endless worry and stress, and endless pain of different sorts for both of us.

His body degrades markedly. System after system begins to fail, and then fails even more. It’s hard for him to eat, to walk, to move, to sleep. He has horrible breath, his skin and muscles and teeth are breaking down, and perhaps worst of all, he’s impotent. So, we leave our lovership behind, and become more of what we’ve always been. We are best friends, living together while one of us is dying.

After more than a year of no progress with his illness, my thoughts grow darker. One of the horrors is that I find myself wishing for his death. Several friends say he is hanging on to life for me. I’m not sure if this is true, but now there are times when I close my door, sob uncontrollably, and tell his spirit it’s ok to let go. I tell his higher self that I’ll be fine, that I can make it without him, that he doesn’t need to worry about me. And maybe he’s hanging on for me, or maybe it’s for something else, something unnameable. He continues to search for a life purpose and even though he doesn’t find one, he hangs on.

The truth of caregiving, and the truth of a long dying, is that those who are closest get angry and scared and worried and burned out. The truth is that as a caregiver, I feel guilty that I can’t live up to the very real burden of caring that is placed upon me. The truth of a long dying is that I am carrying a level of burden that only those others who have endured it can understand.

For one of the heaviest burdens is supporting a person who may not be ready to look at their dying, their approaching death, and the enormous toll on those who love them. And the truth of my caregiving, the one I feel the most guilt about, is that there are times when I think about walking away. Michael continues to stubbornly project a future that lasts for five to seven more years of what we are enduring. And because I always have, I believe in his force of will, his ability to manifest, and seven more years of living together in this half-life feels unsustainable to me, feels literally, like a living death.

Finally, in a moment of clarity and pain, I tell him that I can’t do “this” for another seven years, that I will always take care of him, but I might find another house to live in, another place to stay. I know this hurts him which engenders even more guilt, but I feel I will collapse into a lesser self if I don’t say it, if I don’t tell this level of truth. But in spite of this, I don’t leave. I can’t leave. As much as I would sometimes like to leave, I must be here for my friend. Still, it is almost unbearable.

The two years of his formal treatment begin to feel endless. He tries not to drag me down, though I am dragged down nonetheless. He is sick and his body is literally falling apart. But in spite of this, I admire him. For the most part, he suffers well. He keeps going, keeps believing, keeps trying to do everything he can to get better. At some point last December, we are so close that I have dropped any thought of leaving him and I tell him this. I am fully committed to being with him to the end, whenever that is. There is a new level of trust and intimacy between us, and I’m ready to endure whatever life may bring.

Regardless, his treatment isn’t working and he’s not improving. At our January hospital appointment, a “salvage transplant” is offered. After several worried days, Michael decides not to pursue it. He says there is no data to support it. I am so relieved! I realize I haven’t been breathing, dreading all that another transplant would mean. Finally, I can take a breath.

We leave for Florida for a month and begin to make plans for his death. It is an excruciating time between us. And it is a time for deep healing – a time when everything is said, when all the love and pain and fear are told and known. In some ways, we are the closest we’ve ever been. We come home with my belief that we are now on the road to Michael’s long degenerative death.

Then, at our next medical appointment in March, the doctor dangles a second stem cell transplant in front of him again. The doctor tells Michael it may “improve his quality of life.” These seem to be the magic words and when the doctor leaves the room for a moment, Michael literally whirls his head toward me with the most intense look I’ve ever seen. He wants this transplant! Even though he said he didn’t want it two months ago, now he wants it.

The doctor re-enters the room and I ask the pointed questions that Michael isn’t asking, the questions about the potential effects of the second transplant.

“Will the swelling in his tongue go away so that he can eat more easily?” “No.”

“Will the swelling in his legs improve?” “No.”

“Will his skin improve?” “No.”

“Will the deposits in his heart dissolve?” “No.”

“Will the deposits in other parts of his body go away?” “No.”

“Will his impotence disappear?” “No.”

“So, what will get better?” “It is likely that he will have more energy.”

I am appalled. I think to myself that this isn’t worth risking what life he has left. But Michael wants this, and as I sit in numbed and shocked awareness, he agrees to another transplant.

Another transplant, after I thought we’d spent the past month coming to peace with his dying. Another transplant, meaning weeks in the hospital while he clings to a slim thread of hope and life. Another transplant, which may literally kill him but which offers the possibility of “more energy.” Another transplant. It feels foolish and stupid and wrong, and then I am angry. I want to scream at him, “Can’t you see you are dying? Can’t we just get on with it?”

But I don’t. Instead I gently tell him that I’m not sure this transplant is a good idea, that I am worried that it will kill him. But he can’t see it. Not yet. It’s too much to believe, too much to take in. So, I agree to help him. I agree to back him up as completely as I can.

So, this caregiver becomes a cheerleader, a false witness to a process that is so obviously flawed, and so obviously painful, that the truth, the whole truth, can’t be said clearly enough. For when does one support the quest for a cure, and when does one say it is foolish? When is it honest to say what one sees and feels? And when is it simply cruel? And, really, what can anyone say about another’s desire to keep trying to live?

Relationships, real relationships, are far more nuanced than any story can tell. Real relationships involve compromises and choices and changes, some of which literally lead to life-denying patterns and pain.

Ultimately, it doesn’t matter. He dies 32 days after the transplant and he is gone. Does our change in relationship mean I don’t grieve deeply and truly, that I don’t suffer in my heart and soul? For surely, I do. I have lost my best friend and I miss him with an intensity that surprises, scares, and humbles me.

A few weeks ago, I found a letter that Michael never sent to me. It was roughly written in one of his many notebooks while he was still in the hospital, and it was dated two weeks before he died. He’d had a particularly awful day and in it, he said he realized that he was dying and he had accepted it. He felt he still had a fair amount of time to live but he was philosophically open. He was in and out of deep and frequent meditations at that point and he knew he was going to a place without a body, a place without the pain of earthly existence.

He apologized for putting me through all that he had put me through, and he wished for me to find my freedom and my peace. The letter ends with this: “Wherever I am, whatever I am, know that I hold you close in my love and consciousness for all eternity.  If it can be stated in truth, I’m saying it with all my being.” These are the last words he ever wrote and they always make me cry.

We came together as soul mates, and he died as my soul’s companion. My mind flashes back to our last moments together every single day. He died with our last words being words of love, words gasped out in the final terrifying minutes of his life. I’m so glad for this, so filled by it. I believe he had a beautiful death.

Clearly, our souls were meant to be together, to accomplish certain things together, to love and learn together. But our mission is over now. Knowing the depth of Michael’s soul, the depth of his spiritual practice, I can only assume that he accomplished what he was meant to accomplish. I can only assume that he was done with this life.

So now I can tell the truth. The truth of his illness and his impotence and how it confined our relationship, the truth of my reluctance to fully commit to seven more years of our half-life together, the truth of his fears and his final acceptance of death. And ultimately, the truth that love takes many forms. For we loved each other, through all the missteps and sorrows and joys. And in the end, it is all that matters.

Thin Ice

December 21, 2017

We meet with our wonderful nurse practitioner once again and after 17 months of treatment she tells us that Michael’s light chain numbers, though slightly lower, are still not in the normal range. She tells us that if they hadn’t gone down, the medical team would have recommended a “salvage transplant.” We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

What a phrase! A Salvage Transplant. It sounds so industrial, so vehicular. And I guess to some extent the language is actually representing the spiritual understanding. It literally would be a stem cell transplant to salvage the vehicle of the body, the vehicle of the soul. But it sounds harsh and desperate.

We come home in shock and upset. I’m trying to get my head around what another stem cell transplant would be like now that these transplants are done as outpatient procedures. This literally means that Michael would be taken to death’s door once again and that I would be the person at home taking care of him. Michael is remembering that it took him almost a year to truly recover from his first transplant. It’s overwhelming and I am terrified.

All I remember from the last transplant is that it was a time in hell. The idea of going through diapers, and walkers, and sponge baths, and Michael’s horrifying loss of function once again, is utterly frightening. We would have to get help because I truly couldn’t do it alone.

Michael’s white blood count would be taken down to zero and he would be near death, unable to eat, drinking only minimal amounts of water, moaning and sleeping most of the time.

I would be on call 24-hours a day trying to get him to sip water or broth, keeping him warm, monitoring his intake and output, taking his blood pressure and temperature, and keeping him clean and bathed. I would have to quit my work, hire nurses, and get help with all kinds of tasks that I’m simply not strong enough to do. Just getting Michael in and out of the few steps to our house, wheelchair bound, for our daily trips to the hospital, would require more than I can do. If I dropped him, or if he fell, I simply couldn’t pick him up.

I’m realizing that this salvage transplant idea has scared me to the point of complete ungroundedness until today. Once I meditate and accept my feelings of fear and terrible sorrow, I can move on. Finally energy comes flooding through me from crown to feet. It is the energy of this holy day, this Solstice.

This energy allows me to realize we have reached the beginning of the end – or at least the beginning of the end of Michael’s formal medical treatment. I finally say these words to myself today: The beginning of the end. There may be a long middle section, I don’t know, but it’s clear that we have reached a new level of seriousness. And though Michael doesn’t need a salvage transplant this week, I have a strong intuition that it will be offered again in the future.

What does this mean now? We’ve both been thinking about how to live whatever life we’ve got left. It’s the question for anyone our age, and really, and it is the question for all of us all the time. How do we live a good life within whatever restrictions life has placed upon us?

This is the richest ground, this thin ice, upon which we’ve ever stood. Perhaps richness tends to happen more easily within the restricted ground of mortal illness. It compels us to look closely and pay such deep attention. Life and death are literally at stake and we are forced to live in the present moment! There seems to be little effort in this other than a commitment to see and hear what is really going on around us. What a grand and unexpected benefit this is in a crisis — present-centeredness simply happens.

Since it is the Winter Solstice, we both do tarot card readings, trying to see ahead into our murky futures. This is the reading that looks at the movements of energy within us until Spring raises her lovely green head again in March.

My reading was positive though I have to realize that I am blocking my “initiation into the secret doctrine” (The Hierophant) with my sense of being imprisoned by circumstances (8 Swords). In the four cards that represent the self’s pillar, I receive the Sun, 3 of Pentacles, the Devil, and the High Priestess as the outcome.

The message seems clear to me. My heart (the Sun) is shining brightly and my environment is colored by “perfected work.” But then the Devil appears warning against delusion, illusion, and the power of the mind to distort reality. Finally, the High Priestess emerges as the outcome. On the Tree of Life she is the guardian and the guide to the central channel that leads to the Highest High. Oh how I wish to be guided by her! I meditate on her blue light and find peace.

Michael’s reading is more mixed. His enlightenment is present in the Temperance card that appears in the position of the past. And there are other helpful energies along the way, but he is plagued with the same sense of imprisonment that I had (8 Swords) though his appears as the Self card, which seems fitting. The Tower is also in the self pillar indicating some kind of lightning strike, the hand of God reaching out and upending the status quo. His outcome is the 9 of Swords – sleepless nights. We literally laugh out loud as this card is turned. As a natural outgrowth of this process, we’ve had many sleepless nights, and it looks as if these will continue.

Today Michael says, “I probably won’t go through with another transplant. There’s literally no research to support it.” He explains that there is some support for using this second transplant in a related disease but it’s only anecdotal evidence and it’s for people who’ve already had a remission. Michael has never had a remission. All in all, the costs outweigh the benefits. Suddenly I find my first deep breath in days realizing that I’d had no idea how long I’d been holding my breath.

I’m so relieved by Michael’s statement, by his strength, by his good sense, by his willingness to face into whatever comes with courage and truth.

I write to our nurse practitioner about our concerns and she tells me that an outpatient transplant is “optional” and we could still do it as an inpatient procedure. Though neither of us heard this at the time of our appointment, it softens me and I realize we could make it through such a thing again. I tell Michael this and he says, “There’s still no data to support it.” And he’s right.

So, now, for whatever reason, as Winter dawns we are being drawn more deeply into ourselves. It seems very natural. We have arrived on this rich spiritual path to explore what it means to truly live our lives, knowing they can be overturned at any moment.

The ice is thin here, almost like glass, and I see through it into the depths of the water below. It can break at any moment and we can drown. But for now we are learning to skate this slippery path, learning to balance in the cold bracing air, giving ourselves freely to the heartbreak and joy that it means to be fully alive.

Anniversary

June 26, 2017

It’s our 30th anniversary today, and it’s certainly the strangest anniversary we’ve had. We spent the morning in the cancer clinic and chemotherapy suite which is always strained and difficult. I find I am raw today and I cried for the first time in front of our nurse practitioner who has become our primary care provider. Maybe it’s because it’s our anniversary, or maybe I just needed a reason to cry since I haven’t been openly crying lately. But today held more questions about the future and the long term outcome for Michael.

Today also made it clear that the “year of chemotherapy” we began this journey with, wasn’t really just a year. At that time I naively believed that I could get through a year. It’s only 12 months. It will be difficult but doable. Now we’ve been offered yet another drug after this one, and the promise of more chemotherapy advances in the future if that one doesn’t work. In other words, Michael could be on chemo until the day he dies which is exactly what happens to a great many patients.

I asked about the future if we stop the chemo and of course, she doesn’t have any answers. We can’t know what would happen if Michael quits the chemo, and we can’t know what happens if he stays on it. But she is really glad that we are talking about the quality of life and she wishes everyone would talk about it rather than just going from drug to drug to drug.

It’s Michael’s decision of course, but the quality of life right now is terrible. He’s tired, and there’s a lot of sitting around the house, timing the various daily therapies, and eating mushy, gravy-laden foods that are the only things that work with his dry mouth and swollen tongue. His skin looks sick and sallow and his eyes have constant bruising and tearing. Even a little scrape against clothing can cause bleeding and cuts that don’t heal for weeks. Our days are full of numbing sameness and our nights are full of searching the TV for something uplifting or interesting.

So today is a harder day, and as one of my friends says, it’s not going to get any easier. The longer we walk this road, the harder it becomes. It’s just the truth of long term mortal illness and the endless machinations of drugs and treatment regimens.

And because it is our anniversary, I’ve been thinking about our marriage vows more deeply. In fact, I went to the bookcase in which I was sure I had stored our vows only to find that the book I’d written them in wasn’t there. It’s not anywhere that I thought it would be and I’m puzzled by the metaphor that appears before me now – the “loss” of our vows. Clearly, it is a good time to deepen into those vows of 30 years ago but I have to do it from memory rather than from the actual words.

I’m sure there was something in the vows about “in sickness and in health” — some kind of acknowledgement that we are in this together, come what may. But we were so young then – mid-30’s – and we didn’t have a clue about what we were promising. Both of us were healthy active adults with children to care for, careers to grow, and a house that promised to hold us all together. We’ve been lucky. Our marriage has been a joy and a fellowship of mutual support, kindness, and deep soul connection.

Now with Michael’s illness, the “in sickness” part of our vows has become much more real. Though I had kidney cancer 18 years ago my recovery was relatively quick and uncomplicated. It left me with years of unexplained fatigue but we still went to work, went on vacations, had parties, visited grown children, had friends over for dinner, and lived a more or less ordinary life. Now our life is far from ordinary and both of us mourn its demise.

So I support him in his sickness knowing that it may never be healed, knowing that whether I like it or not, I choose to live out this vow made 30 years ago. It’s a tougher vow than I realized at the time of course, but it’s a vow that speaks to one’s integrity and one’s soul and I know that I am growing in both of these.

We spoke with a psychic recently, a woman we trust, a woman who has given us good advice over the years. And I’ve been watching Michael since that time, watching to see what he is going to do with the information she gave us.

She said Michael’s illness is all about the long term karma of self-sacrifice. She said he’s been a healer in many lifetimes, and each of those lives has involved giving too much and not receiving enough in return. She says the cure for Michael is to meditate on the light and dissolve into it. He’s good at this and he takes this task seriously. The cure is also for him “to learn the energy of receiving.” He must open his heart and receive love from others.

He’s been puzzling over this and I’ve been asking him what he thinks it means. So far, no real answer has emerged for him and I’m not really sure that one will. The psychic also said that since Michael has attained a level of enlightenment, he will not have to return to an earthly existence. So today he sees our whole scenario as a “win-win” situation — either he’s healed and he lives a normal life span, or he dies and he dissolves into the Oneness that is his true home.

In our conversation about the psychic reading he asked me what I needed and I found myself saying, “I need you to get better!” It was so childish, really, a child’s cry against the unwavering reality of physical decline. I knew it was childish but it was also true, and I dissolved into tears.

I can see that these patterns probably aren’t going to change. For what is the energy of receiving? It must involve the opening of the heart and truly knowing that you can’t do it alone. And this is a man who has always done it alone as long as I was at his side. He has never admitted defeat, has never needed anyone but me to help him, has never been overwhelmed by this life, this illness.

But I can also see where this is leading. At some point, he will be gone, and I can see that at the level of his enlightened consciousness, it’s all the same to him.