Hope

Michael’s current stem cell transplant has made him terribly ill. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

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April 3, 2018

“You’ve got to keep your hope alive!” These are the words from a woman I know who has asked about Michael’s transplant. I had just told her that my hope around these medical treatments just isn’t there anymore. She, too, has struggled with a sick loved one and in their case, her hope has paid off.

As I walked away from her I realized that my first reaction was guilt for not being “hopeful” enough, that I’m being a bad spouse by not jumping on the Hope Train once again. But I’ve ridden that train, and I rode it hard during the first transplant, during the first chemo, during the subsequent chemo, and on and on. It’s taken me nowhere but into hopelessness. All of which makes me begin to question the underlying assumption that hope is good, is helpful, or is even necessary.

One thing I’m realizing is that hope is always about the future! We hope for some kind of better outcome and all hope is constructed on wishes for positive change in the nebulous time that is not now. Let me repeat that, it’s not Now! And finally, I’ve learned that the only time that really exists is this present moment. This one. The one that you’re using to read these words.

For the truth is, nothing is real other than this moment. Everything else is memory about the past or fantasy about the future. Most of the time we don’t stop to question the assumption about the goodness of hope, the necessity to feel that the future will be better. But what I’ve noticed is that hope knocks me out of the present moment and into a place of wishing, and if that wishing doesn’t come true, then what? Have I not hoped well enough? Or is Michael’s own hope somehow tainted? What happens when hoping just doesn’t work?

We believe we are seeding the future with our current thoughts. And certainly, it is important to have positive expectancy for the future. Things could get pretty dire if we fail to believe that our current sacrifices aren’t creating a better future down the road. But it is also important, and really more important, to have positive expectancy for the moment in which we find ourselves. For if we do not love this moment, this very moment, we are doomed.

Michael’s current stem cell transplant has made him terribly ill. His white count has plummeted and now he has no white blood cells to protect him from infection. I watch his heart monitor as he receives a platelet transfusion — sometimes its beats are even, sometimes they jump all over the place. It’s a precarious time that is filled with the mind-numbing boredom of longterm hospitalization punctuated by moments of horror. And no matter what I hope, it doesn’t change a thing!

So is my lack of hope a problem? For the opposite of hope is certainly a kind of despair, and god knows that none of us want to sink into despair. But perhaps this is a false dichotomy. Perhaps there are unnamed options outside of hope and despair. Perhaps there is a middle ground that has nothing to do with hope.

At this point, I’m searching fiercely for that middle ground. It’s located somewhere in a sense of the immediate and the neutral, located in a radical sense of accepting everything just as it is. It is not negativity or nihilism or denial. Rather it is a firm stance toward the goodness of the moment, toward an understanding that this moment is holy, that this moment is where it’s all happening, that this moment is the only thing we’ve got! And in this moment, the meaning is made.

The last line of Emily’s poem is the most mysterious for me: “and never in extremity it asked a crumb of me.” This doesn’t feel like the hope that I’ve nurtured in myself during these long months of Michael’s illness. For my hope has asked me for many crumbs. It has asked me to tend to this thing with feathers in the face of devastating disappointment. It has asked me to  believe in a treatment that hasn’t worked, that hasn’t flown. Or maybe I just haven’t understood hope deeply enough, maybe I’ve clung to it too hard. But for me, I feel that Emily is speaking of Faith, not Hope.

I find that my faith is now anchored in believing that everything that is happening is for the Highest Good. This is a very hard faith to practice in the face of the death and destruction all of us can see around us now. It is a very hard faith to practice as one test after another comes back showing no progress in Michael’s illness. It is a very hard faith to practice as I watch my husband trying to take in some broth as his white blood count hovers at zero, and horrible diarrhea becomes the result. But it is the only faith I can muster — the faith that whether we can understand it or not, there is a force in the Universe that is always moving toward the highest evolutionary principle, toward the Highest Good.

In this Universal scheme we are less than a blink of God’s eye. Our individual lives are an experiment in evolution and ultimately, a test of our ability to love. The circumstances of this testing are more complex and manifold than any of us can ever grasp, but always we are held in love. This becomes my Faith in the underlying goodness of our lives, and in our deaths. And this faith is unshakable.

At this point, I’ve given up on hope and it feels like I’m taking a breath of sanity in an insane situation. I don’t believe in it anymore. I’ve clung to it and now I know that this is a mistake. Hope still flies through my mind many times a day, but I have learned to watch her feathery flutterings and come back to faith instead. It feels more solid and more real.

I still find myself hoping that Michael can continue to take in liquids, that he can continue to find his way through this maze of drugs and nausea and extreme exhaustion. But I also know that my hoping doesn’t change anything here, that in fact it can lead to hopelessness and loss of heart.

Instead I watch him eat the little bit that he can eat. I listen when he complains about his stomach and his gut. I respond to his moans. I touch him softly on the arm to let him know I’m here. And over and over, I let go of the future, let go of hope, and dwell in the love and faith that lies between us now in this desperate and sacred place.

 

Transplant

I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

transplant

March 26, 2018

Michael’s second transplant has started. There are six bags of stem cells today, and six again tomorrow. But today I am realizing how dangerous this really is. He’s been pre-medicated with Benadryl because of the strong allergic reactions that bodies have to the medium in which the stem cells are preserved.

“Now, you know you need to tell me if you have any heart pain or chest tightness,” the nurse says again. Michael nods but now both the nurse and I are on high alert, watching carefully. Meanwhile Michael has moved into closed-eyed silence and only monosyllabic responses. I should be used to this by now, but I’m not. When he is sick I always feel like I’m being shut out. But I know that he’s just gone deeply inside himself to find the strength needed to get through this. I also know he will become more and more silent as he gets sicker and sicker over the next long days.

Then yesterday we were told that there is flu on this ward. Apparently, there have been deaths from the flu in this hospital but we don’t know if those happened on this ward or not. Regardless, I’m even more cautious now though there’s not much to do but wash my hands a dozen times a day. Mostly, I sit and watch, and today I bring my laptop.

It’s boring really. Tremendously boring and also horrifying. Two days ago he was given a poison that will almost kill him in the next two weeks, and now he’s being given the stem cells that might prolong his life. But even the stem cells have risks and the progress of their input is watched closely, the nurse standing by for the next two hours, carefully monitoring every sign of life.

Michael’s throat has started itching and though that doesn’t sound like much, the nurse immediately backs off on the rate of the stem cell drip. It’s a sign of an allergic response and they’re not taking any chances.

This is good! During the last transplant 19 months ago, I am at my youngest son’s wedding. It is a tremendously hard decision to make but the nurses assure me that Michael is in good hands and I choose to see my son marry his beautiful wife. I just can’t miss this milestone event and Michael strongly encourages me to go. He knows exactly how important it is to me to be there.

In the middle of the rehearsal dinner I get a text from Michael saying that they just placed him on oxygen. I am terrified.

I go outside and stand on a cliff above the California ocean and cry unrestrainedly. “I should be there, I should be there,” is the refrain in my mind. But I’m not. I’m 2000 miles away and I don’t know what’s going on. I get another text that he’s gotten so much fluid with the transplant that it’s become hard for him to breathe. I go back into the dinner and my other son’s wife explains it to me. She’s a nurse and she can see how upset I am. “It’s not a big deal,” she says, “people go on oxygen all the time. The fluid pressed against his lungs and made it hard for him to breathe. They’re doing the right thing. He’ll be ok.”

I am much calmer but I’m also anxious to be back home, to see my husband with my own eyes, to know he is truly ok. I’m only gone for 3 days but it feels like a lifetime. What a comedy of timing! My son’s wedding, my husband’s transplant. Could it get much more dramatic? And then I realize that of course it could. Michael could die from this.

Now as the stem cells continue to drip into his arm, I tell the nurse about his previous transplant reaction, about the use of fluid that compromised his oxygen intake. The nurse pays careful attention to what I’m saying, checks his oxygen saturation, and it seems this will not happen again.

After a few hours, it’s done. There haven’t been any really bad reactions and now Michael is sleeping. The stem cells are in and making their way to the bone marrow, to the possibility of building new life within his sick one.

But I also know what’s coming. In about a week, Michael will literally be standing at death’s door once again. His white blood cell count will go to zero. And then, if things go well, the stem cells become engrafted and take over for the stem cells that are no longer healthy. Once this happens he gradually comes back from his visit to the underworld, hopefully coming back stronger than the last time.

Transplant day is counted as day zero here on the ward. It is celebrated as a birthday and helium balloons are given out in an effort to cheer up a procedure that is anything but cheery. Really, it’s not a birth day, but it is the possibility for a rebirth. And no matter which way it goes, it’s the end of the line for us. It marks a rebirth into a new life, or into the next life. And either way, both of us are looking forward to going home.

Death’s Lessons

No matter when it happens, Michael is on his way to a good death in which he is loved and cared for and spiritually awake.

broken heart

September 21, 2017

We got Michael’s new numbers three days ago and they aren’t looking good. They’re about the same as last month’s numbers which are still far outside of the normal range. In effect it looks as if the current treatment regimen isn’t doing what it is supposed to do. This is a blow I literally feel in my gut and my heart – things just aren’t getting better.

Our cheerful new Indian doctor tells us he wants Michael on the same protocol for another year. I can’t stop myself and I say, “Another year?!!” He immediately backs off to another 6 months – and I mentally thank god that he’s amenable to negotiation. But even another 6 months of this treatment that isn’t working seems absurd to me and I begin to say so, “What’s the point of continuing to pursue a treatment that appears to have plateaued?” He hears this and he shakes his head and he says, “You are right! It does not make sense.”

Then Michael says the magic words. He says, “We are healthcare professionals and we understand the protocols you are operating under.” Our doctor immediately relaxes and smiles. We are healthcare professionals. We understand. Suddenly the whole scenario becomes one human being talking with other human beings. It is such a relief! He tells us, “You can ask me anything and I will tell you the truth.” So now we really get down to business.

The doctor wants Michael to stay on the current protocol for another month. If there are still no substantial changes then he will change one of the medications for another one that is in the same class of drugs for two months. If that doesn’t make a difference, we go to the last real option – a drug that has been very effective for amyloidosis treatment. Of course I am wondering why we didn’t go to this drug long ago but the doctor tells us it’s really the option that they like to “save for last.”

The other reality is that insurance won’t pay for this drug unless Michael has “failed” the other protocols. It’s ridiculous. Our bill is already way over $800,000. I mean, how much money could have gotten “saved” by following this plan? Thankfully, Medicare has paid the bulk of this or there literally would be no way that we could continue with any kind of treatment.

We leave the doctor to go for the chemotherapy appointment feeling that we’ve made some kind of progress, though I’m not really sure what it is. Still, both of us are feeling a bit lighter. Once we’re in the chemo suite Michael says, “You know, in spite of everything, I’m still feeling positive.”

I look at him, not wanting to cry, and I say, “At this point, I’m just struggling to stay neutral,” and I turn away before he can see how much emotion is behind this statement. I really don’t want to rain on his parade, such as it is, but I have to tell the truth.

Then he says, “I’m actually pretty happy, you know. I’m doing OK,” and I believe him. I remember a conversation with one of my sons who said he thinks it’s easier for the one who is dying than it is for those who are left behind. At the time I agreed with him, and in many instances, I still do. No matter when it happens, Michael is on his way to a good death in which he is loved and cared for and spiritually awake.

I’ve been noticing lately that there are two Michaels obviously in play now – the mortal and the immortal, one facing toward life, the other facing toward death. It’s quite interesting because they can both show up within a few moments of each other, even within the same sentence sometimes. The immortal Michael is absolutely ready for death. He knows it’s coming, he’s not afraid, and in some way, he welcomes it. He knows that to be conscious without a body is one of the most beautiful of gifts.

The mortal Michael staunchly, stoically, and fiercely clings to life. He says he still loves life, he’s feeling optimistic about his prognosis, and he’s not really suffering except physically. Now sentences begin with, “ I’m really tired and it’s feeling hard to go on today, but I’m also really fine.” And both of these things are true.

As we sit for the long wait for the chemotherapy to be delivered, we talk about the new numbers. Michael’s kidney function is normal. This is good news because it means that for whatever reason, the amyloids are not being deposited in his kidneys and probably he won’t need dialysis. I say that I’m guessing it’s his heart that is taking the brunt of the deposits and he agrees. But he says that even that is good because it would mean a quick death – a heart attack.

My gut gets queasy, and a feeling of dizziness overtakes me. I excuse myself to go for a walk. A heart attack is “good.” I understand what he’s saying but what sort of a situation are we in that makes a heart attack good? I’m trying to take this in and I go outside to the small garden that is beyond the chemo area. I need a place to sit, a quiet place, and of course these places are very hard to come by at this hospital. I walk the length of the tall black fence that lines the garden only to find that there is a strong lock on the gate that leads to benches and plantings and some semblance of peace. Oh well. I continue walking until I find a tree in this barren place, one of the few, that I can sit under to feel the ground again.

I sit on the earth more deeply now and meditate in order to still the torrent of emotions within. “Here is the truth,” I hear myself say, “My husband is seriously ill and so far, not really getting better. Sink into the earth. Accept this hard truth. Just feel it, allow it in fully. Let it be.” It’s amazing to me how often this is the lesson in life, in any situation in life – just learning to accept reality exactly as it is.

Of course this is much easier said than done. I can point to other losses in my life – my father’s death at an early age, my divorce, my children leaving home, a few good friends who have gone in other directions – all of this has hurt. And now it feels like all of these losses have been leading to this one. This is the deep grief of life, the loss of loved ones, the loss of our own life, the deepest sorrows. And all of us must face it in some way or another.

As I am sitting I realize with stark intensity that when Michael dies, it is likely that I will never be loved so well again. There will never again be someone who has cared for me for 34 years. There will never again be someone who knows me in this particular and intricate depth. And this is true with any death of a long-held and deeply loved one.

But there is also a raw intensity of beauty in all of this. There is the potent and insistent knowing that life is ephemeral, passes quickly, and is gone. Death reminds us that connection to others is the One True Thing. And the truly appalling thing is that we all know this! We’ve all lost someone and we know the aching emptiness of that loss and yet, somehow, we forget. Over and over, we forget death’s lesson.

As I continue to sit I hear a voice from my innermost being, “Open wide to all of it,” it says. “Let your heart be broken so deeply that it will never close again. This is the greatest gift of death. Receive it now, receive it with your entire being. Allow yourself to be broken open all the way, and always, always be guided by love.”

A Testament To Michael

It is a faith he has practiced his entire adult life and now it is here to be used in the biggest way possible.

Michael

September 9, 2017

Today I speak of Michael and his journey through illness.

Michael is going through hell. But you wouldn’t know it unless all you do is look at him. Certainly his body has changed immensely, but that is part of serious illness. It is his Spirit that remains remarkably pure.

Michael is going through hell. But each new wrinkle in this almost impossible process is met with equanimity and calm. Certainly, there are physical reactions to his plight. These are inevitable. But they rise and they fall away. He notes them, he mentions them, and then he leaps to the spiritual understanding that allows him to meet these gross indignities with both genuine acceptance and real presence.

Michael is going through hell. But his courage is intact. This is a trick worth noting! To be told that your “numbers” aren’t looking as good as they should, to take that information in fully and without resistance, and to accept that this is the reality, is a huge act of spiritual faith. It is a faith he has practiced his entire adult life and now it is here to be used in the biggest way possible.

And even though Michael is going through hell, he remains mostly steadfast in his belief in his eventual recovery. Of course there are times of doubt, times of trial, times of despair. It would be some kind of bizarre denial if there were not. But in spite of this, he remains focused on a good outcome. He’s looking forward to one day being off of chemotherapy and able to use whatever alternative therapies are available to him. In other words, he has hope.

From time to time he apologizes to me for having brought this sickness into our lives. “I’m sorry,” he says, “I’m sorry I brought this to us.” I say, “I’m sorry too. It’s been hard.” And then we go through the spiritual song and dance we’ve developed around his illness — each of us expressing that we know we are both players in this drama, that we’ve both chosen to be here to learn the lessons, that most of the time we’re learning something so deep we can’t even begin to name it.

Michael’s path to this level of understanding has come through Wisdom. He has studied esoteric traditions his whole life. He knows more about the arcane spiritual mysteries of almost every culture than anyone else I’ve met. And when he studies, he studies deeply.

He knows The Tree of Life, the Tarot, Builders of the Adytum, Rosicrucianism, Shiatsu, Chinese Medicine, Catholicism, the Bible, Reiki, Chakras, Remote Viewing, Astral Travel, Buddhism, Numerology, Astrology, Hidden Archeology, and much more. He can integrate information from a vast array of sources and bring it together in a way that is utterly unusual and genuinely deepening. And he believes in magic.

Michael used to be a master healer combining psychology and alternative medicine in a manner both unique and effective. He was also a highly unusual therapist with more than a little iconoclasm and irony thrown into the mix. At one point in his career he wrote psychological evaluations using numerology along with an array of other tests. They were seen as being “the most accurate personality assessments” that others had ever read. He has been known to tell clients that they “need to cut that shit out,” and amazingly, they have listened! People have literally come to see him from hundreds of miles away, have come to be healed, and have gone away satisfied.

Now this part of him is no longer operating, no longer relevant. Suddenly, and with warnings that went unheeded until they couldn’t be ignored, his Higher Self has chosen a different path.

So how does Michael now spend his days? Sometimes he writes, wanting to transmit spiritual understanding to others. Sometimes he practices his penmanship by copying numerous pages of historical documents using one of his precious ink pens and treasured Japanese inks. Sometimes he catches up on our financial books, a task I’ve managed to joyfully avoid. Sometimes he plays various games on his iPad. Sometimes he’s on Facebook and news channels and is more knowledgeable about what’s happening in the world than most. Sometimes he plays computer scrabble and then routinely beats me and our friend at scrabble on the weekends. Sometimes he bakes gluten-free bread, whirls an oddly-concocted smoothie, and makes apple crisp from our many backyard apples. Sometimes he appreciates the brief moment when the whole kitchen is clean. Sometimes he sits outside in a comfortable chair just watching the world go by.

Once a week, when he’s still high on steroids the day after chemo, he does chores. He goes to the store and the recycling center, gets gas, goes for a longer walk, and graces me with the immense gift of time alone in my own home. This kind of time has been rare! It’s only in the last month that I’ve truly stopped going to his chemotherapy appointments though I still go when we meet with the nurse or the doctor. The rest of the time now, he goes alone, and he actually seems to enjoy this solitude.

Michael meditates often. I suspect he goes to places most of us have never been. His knowledge of The Tree has allowed him a way into the Highest High and the Dazzling Dark. He has pierced the veil and met angels and guides and other archetypal energies on many occasions. He has been immersed in various qualities of light and sound and has been shaken to his core. He has been purified and blessed and he knows it. And finally, he has attained a permanent realization of his essence.

Occasionally, he wonders about what his life is coming to and what his task is now that he’s ill. There’s no definitive answer, of course, but it’s a question that each of us must ask if we are to find the hidden meanings behind the opaque face of physical reality.

Michael is going through hell but he seems to ask these life questions with great courage and grace. Certainly he complains from time to time but mostly he is kind and gentle and quiet.

Michael is going through hell. And still, he loves me as best he can and I return the gift. I have such deep respect for how he is meeting this time, these circumstances, this place in his life.

Michael is going through hell but it is no longer hell that he walks through. It has transformed him and he has transformed it. It is the challenge of meeting life on its own terms with absolute knowledge that it all ends in death. For all of us. And there is no fear.

Now Michael and I are such great friends and we sit together, not in hell, but in a new kind of peace. It is a peace built on living without answers, of not having a clue, of not knowing much of anything, and still somehow accepting and trusting it all.

Hope and Poison

flower sidewalk

Feb 25, 2017

I had tea with a friend yesterday and he told me that the word “poison” was a word he had trouble with in my writing. I said, yes, it’s a hard word, a harsh word, but that I had used it consciously. The more I think about it though, the more depth I’ve encountered with it, and the consciousness I thought I had with the use of this word has been questioned and deepened.

Michael is being poisoned, and it’s a word we both use. It dissolves any sense of denial that we might have about what is happening, about the reality of this treatment he is undergoing. But as my friend said, it is also the poison that heals. And that is also the truth.

I’m not ungrateful for this treatment. Without it, Michael would be dead within the next several months. I’m also not ungrateful to the people who give us these treatments. They work hard and they are saving lives, and by and large, they are truly dedicated and caring.

But it’s such a primitive way of healing, this poison we consume. I remember going to an event at which Bill Moyers was present because he wanted to use the work for his series on healing. The presentation was about cancers and the way we heal them. The refrain of the song throughout the piece was “Cut, poison, burn!” and the woman who sang this piece performed it with anger and intensity.

It really struck me at the time, and it strikes me still. It’s all we’ve got, this cutting, poisoning, and burning our way through diseased bodies. This is the way Western medicine works right now, and we pay a high price for this healing.

Michael and I have spent most of our adult lives studying and using healing methods that are gentle and in alignment with nature. We have used alternative medicine as ancillary treatment for all kinds of illnesses, including cancer. We know of people who’ve chosen to pursue nothing but alternative treatment for cancer, and we know of several of those who have died. We also know the stories of those who have healed through diet, herbs, energy medicine, and meditation alone.

So we come to Michael’s treatment with a huge load of ambivalence. There are no alternative treatments for Amyloidosis so there doesn’t seem to be any way around our current path. But it’s hard. We believe so deeply in healing from that other realm, from the realm of energy and intention, from the realm of Spirit, that to subject ourselves to this system is difficult and disturbing.

And it does feel like a subjugation, a surrendering of ourselves, to a system that doesn’t understand us or our underlying ambivalence. How can it? It’s built around a method of treatment that gives little credence to diet or herbs or energy fields or any of the methods that we’ve seen work. It’s impersonal and lacks the individualized attention that is one of the hallmarks of alternative medicine. We are just a cog in a giant machine that at its base, cannot care for us in any other way. There are simply too many people to treat and too little time.

Now we’re starting to see the side effects of these “poisons that heal.” Michael is very tired, much more tired than he’s been before, and he can’t seem to sleep well enough to feel better. Even on the few nights when he does sleep well, it’s not enough to allay his underlying fatigue. His eyes look sick. They are red and swollen and they itch and bruise easily. His skin tears with the slightest rubbing against a harsh surface. He still can’t eat much of anything that doesn’t have a sauce around it, something to make it easy to chew and swallow.

In spite of this, Michael and I spend a fair amount of time every day meditating on health and healing. It is what we can do, what anyone can do, to help themselves heal. It brings the light of Spirit into a process that could lack that light without our conscious intentions. And it allows us to hope.

My friend reminded me of a quote from Meher Baba who exhorted his followers to “have hope,” and I found my ambivalence again. Though hope can be the perfect support for any endeavor, it can also bring an influx of desire and wanting with it. And when that kind of hope gets frustrated it leads to anger, fear, and despair.

So I’ve been careful in my hoping, and I think that is exactly what Meher Baba would have supported. As my friend writes to me today, “It is not ‘blind hope’ (like ‘blind faith’) or ‘grasping/craving hope’ that he is advocating, but a hope informed by the reality of grace and mercy.”

I do hope, we both hope, but we hope knowing that we have no control over the outcome of our hoping, that things may turn out very differently from what we hope. And knowing this, with full acceptance, we surrender to reality just as it is, over and over again, trusting that the larger plan of Spirit will bring us to exactly the place we are supposed to be.

Adjustment

Adjustment

February 13, 2017

Another Monday, another day of chemo. I’m finding myself absolutely astonished at how people adapt. Something that was initially horrifying has become routine. And though I know that the horror is still lurking just under the surface, we’ve come to accept Mondays as our “chemo day.”

There are “short chemo days” every other week, and “long chemo days” every other week. And then there are “really long chemo days” once a month. The short chemo days involve only two poisons, while the long ones involve 3 poisons that take longer because they have to be delivered sequentially in case Michael has some sort of adverse reaction to one of them. The really long days involve four poisons, and they are brutal. They last anywhere between 5-7 hours depending on how fast the pharmacy can deliver the drugs. It is agonizingly boring waiting and sitting in our cubicle while trying to entertain ourselves through what has become just another chemo day. The patient gets to sit in a comfortable reclining chair while the support person suffers in a hard-seated straight back chair. I take pillows and sit on the floor from time to time in order to get through these long days but even that is hard and uncomfortable. Still, I’m glad Michael gets a good chair. It’s bad enough for him without adding even more discomfort to these difficult days.

Today was a short day and we’ve become ridiculously grateful to leave the chemo unit in under 2 hours. And today, for the first time, Michael feels he can walk all the way from the chemo unit to the parking ramp with me. We walk slowly, very slowly for my usual gait, holding hands while I listen to him breathe heavily through his protective face mask.

But at least he can walk! In fact, we’ve made it around our block twice now in the past two days with this same slow pace while enjoying this oddly warm February weather. It’s the first time he’s walked outside in the past 5 months and it feels good for both of us to be able to do this. We even went to a movie yesterday, face mask in place, bacterial wipes in my purse, and off to the earliest 10am show in order to reduce exposure to other people. A simulation of normalcy that allows both of us to feel a bit more balanced, a bit more like the couple we used to be.

But the illusion of normalcy is inevitably interrupted by various realities. Michael’s eyes are being attacked by this illness. Sometimes there are huge dark bruises around them, sometimes they are an ugly swollen red and purple. Most of the time they itch and tears continually fall down his cheeks while his body tries to moisten eye tissue that is simply too dry. His skin is so thin that even a slight scrape becomes a bleeding leaky mess that requires layers of ointments and bandages for several weeks before it heals. Now he tires easily, has trouble eating, and of course he has lost his hair. We are learning to live with all of it.

I’m no longer sad all the time though sometimes I wonder where all the sadness went. Again, I suspect it’s hiding just under the surface of this new life we’re living, quietly nestled in beside the horror. Regardless, I’m amazed by the human capacity for adaptation. When faced with horror, even life-threatening horror, all of us try to adapt. We strive to live, we seek balance within the unbalanced, and somehow we make it work.

Sometimes I wonder how many more adjustments will be required of us, of him, and of me. Michael is more accepting since his enlightenment, and thank god for that. He still has his initial human reaction to things but then settles into acceptance and calm. I, on the other hand, must go through various whirlings of emotion and thought in order to accommodate this new reality. I am learning to adjust though the cost is often high in terms of the emotional turbulence that plays in the back of my mind.

This all puts me in mind of the Adjustment card in the Thoth tarot deck. It is the Justice card of most other tarot decks and they both speak of balance. But it is important to understand that it is a precarious balance requiring absolute stillness and concentration to maintain it. According to various interpretations of this card, the slightest distracting thought can destroy this balance, this adjustment.

Now I am excruciatingly aware of the thoughts that upset this balance and I find that any thoughts of the past or the future are dangerous, for both are filled with unreality.

The past often leads back to the good times — to vacations at the ocean or the mountains, to raising three good boys, to the adventure of creating a healing center together, to dancing with a partner who knew my every move, to a daily life that was generally kind and calm. The past is also a place of regret. For who among us doesn’t regret some of the choices we’ve made, some of the moments we’ve lost, some of the harsh words we’ve spoken?

The future is even more fraught and I’m learning to be suspicious of the inevitable expectations that arise. Looking ahead is either filled with hopes and fantasies about returning to a more golden time, or it is full of the darkness of deterioration, grief, loss, and death.

So now Adjustment is my newest teacher in this long process. She is a harsh mistress for she demands greater consciousness in every moment in order to maintain this still and balanced center. If I forget her lesson, I can suddenly find myself in anxiety, sorrow, or despair.

It is this constant dance of Adjustment between centeredness and uncenteredness which is the instruction here, and it is this constant effort that is the real work — the coming back to center again and again and again. Living in the present moment has never been a greater challenge and yet it is exactly this that every spiritual philosophy exhorts us to accomplish.

There is some kind of Adjustment, some kind of Justice, to be found in these gyrations. There is some kind of learning that only great harshness and suffering can teach. It is such a deep lesson, this learning to be present, and after the painful gyrations I return again to gratitude. For in this pain, I know I am being taught exactly what I need to learn.

Chemotherapy Begins

chemo

November 14, 2016

I’m experiencing a cascade of images and emotions after our first full day of outpatient chemotherapy.

To start, we are directed to the “Infusion Therapy Center” for treatment. What a euphemism! It sounds like some luxurious spa with aromatherapy wafting through the air and quiet music playing in the background. Instead it is filled with people, all kinds of people, from the truly aged, to several prisoners, to people who look far too young to be enduring such an assault. And though the hospital has done everything they can to make chemo as pleasant as possible, it’s still a matter of poisoning bodies in order to save them. The place is packed!

Second, every appointment takes much longer than we think it’s going to take. Our one hour appointment stretches into over 4 hours today pushing several other things that need to be done into the busy afternoon. We aren’t prepared for this and we end up eating awful hospital food to fill the voids of stomach and heart that well up in such a place.

Michael also receives a new poison today, a drug called Cytoxan, and at least it has “toxin” in its name. It’s the only honestly named drug he’s gotten so far. We aren’t expecting this since we’d been told that it would come next week and that it would be on its own. Now it’s combined with the other chemo drugs and we are at the mercy of a system that changes rapidly and without explanation.

We ask for clarification and receive our new schedule for weekly chemo for the next year. I’m still wondering if the changes are due to the fact that Michael’s bone marrow aspiration from last week continues to show 3% abnormal cell activity. Though we’d been hoping for 0%, the doctor didn’t seem concerned. He said that Amyloidosis responds more slowly than other types of problems. Regardless, the initial regimen we were told about has changed and it leaves me wondering why.

It’s also weird the way the chemo drugs are delivered. There’s a check and double-check and triple-check system in place which is probably all to the good. But then, the nurse gowns up and puts on gloves and a mask just to hang the highly packaged drug on the IV stand. Michael makes a comment about how this could shake one’s confidence and the nurse says that as long as it goes into his vein and nowhere else, it’s fine. In other words, as long as the toxin doesn’t squirt out onto anyone else and stays in my dear husband’s veins, it’s fine because it’s only poisoning him.

We overhear an old woman being pushed in a wheelchair by an old man as they come to say goodbye to the nursing staff. She says, “Well, I’m 80 years old and my tumor has gotten bigger. I’m just not going to fight it anymore. I’ve fought the good fight and now I’m stopping.” Clearly, she is meaning that she has decided to die. The nurses really don’t know what to say and opt for soothing things, wishing her well, and avoiding any talk of death or dying.

It left me to ponder what one says when faced with a person who has decided to die? I wanted to say something like, “good for you.” If I knew her I would ask her how she’s feeling about her decision, but I don’t know her, and it would be odd. Her husband stands stoically by, uncomfortable and silent, while Michael and I sit nearby in our little cubicle struck by the stark honesty, boldness, and grace of her decision.

I’m finding that this aggressive language of cancer with its war-like metaphors has never sat comfortably in my soul. So, after the woman leaves, I ask Michael if he feels he is “fighting” for his life. Michael says that it doesn’t feel like it’s a battle to him. He’s making an “effort” but it’s more of a “passage between one stage and whatever comes next.” In other words, neither of us has an adequate way of talking about this process. It’s not a war, it’s something far more mysterious and unnamable. There’s an acceptance of the reality and an intention to live a longer life, but there’s also an acceptance that it simply might not work.

So here we are. Whether we say it directly or not, Michael is facing the possibility of his death, and he is unafraid. And, really, I hope I’m facing into the possibility of my own death. In fact, it’s not even a possibility for any of us. It’s an absolute certainty, and so often we don’t really speak this way. We allow our egos to avoid and temporize and deny, as if Michael may be dying, but we are not. It is such a human thing to do.

People visit and tell Michael how good he’s looking, and I suppose he is looking good for someone who’s being poisoned. But really, I look at him and it breaks my heart. His body is going through hell and I can see the hell in his eyes, his skin, and his wasted muscles.

And then I look at his spirit and it is strong and vibrant and filled with light. Perhaps this is the stark contrast that any awake person experiences as their body begins to die – the contrast of body and spirit – one in decline while the other reaches toward infinity.