Thin Ice

We are completely shocked, completely taken aback. We had no idea that the ice we are skating on is quite this thin.

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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

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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 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’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 his enlightenment, he will not have to return to an earthly existence. Now 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.