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 enlightening experience in meditation, 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.

Half Life

“I’m tired of living this half-life!” I blurt this out while washing dishes a few days ago. As soon as I say it, I’m both glad and a little surprised.

October 7, 2017

Screen Shot 2017-10-24 at 2.27.21 PMHalf Life

“I’m tired of living this half-life!” I blurt this out while washing dishes a few days ago. As soon as I say it, I’m both glad and a little surprised. It’s been stuck inside of me for weeks, and now I finally say what is in my heart. I’d been holding back, not wanting to hurt Michael, but now my own pain guides me forward. He takes this in without arguing or resistance. He skips a beat and then says, “Well, what would make it 55%? I mean, we’re at 50% now, so what would make it 55?” So here is the man I love – the ever practical and grounded Taurus, asking how we can take this impossible situation and make it better.

For this situation is impossible. Michael is on chemotherapy for a rare and ultimately fatal disease, and he’s on it for at least another year. And now I have to skip a beat. But the truth is, there’s really nothing that either one of us can do to change these numbers. It is a half-life! We can’t do most of the things we used to do. The only time that we go “out” together is when we go to the hospital. The rest of the time we sit around a lot – on the couch in the living room, downstairs watching TV, or lying in bed together for a brief time before Michael goes into what has become “his bedroom” to sleep.

And, no, we don’t sleep together any longer. It’s just another in the long line of losses we’ve had to endure. Michael’s drugs have made it hard for him to sleep and he will be up for many hours doing all kinds of things to pass the time. There are nights when he pees often and copiously. There are nights when he stays up reading until midnight or later. There are nights when he’s just plain restless. I found that when we tried to continue to sleep together, I didn’t sleep. And I mean, not much at all.

I realize that this is one of our patterns at work: We’re both really sensitive but in different ways and my tendency is to disregard my own feelings in order to take care of him. But I have to tell the truth and I’m finding that I’m very sensitive to what I describe as his “toxicity.” He hates that I call him “toxic” but I can actually feel it. I feel it oozing off of him after his chemo days and for several days afterwards. And there’s an underlying toxicity that just never goes away. He’s not well. He doesn’t look well or sound well or act well. Though his attitude is still positive most of the time, his body is sick.

He objected to my calling him “sick” last week and I said, “But that’s what you are!” He thought about it and decided he is “ill,” not sick. So, ok, he’s ill. Regardless, I feel it profoundly and there doesn’t seem to be a way for me not to feel it. And what it means for me is that I really need to protect my energy, especially at night when I’m trying to sleep.

For Michael’s lack of sleep profoundly affects my own. I put off separating our beds as long as I could and then I realized that though it might hurt him, it is also an act of self-preservation. This is actually a huge realization. It requires me to put my own needs before his – a very difficult pattern for me to break for it engenders guilt. But now I know that through this long process my job is to take care of myself as well as to take care of him. It felt selfish at the time and it still feels selfish occasionally, but I know it is the right thing, the only thing that will allow me to rest. And I desperately need to rest.

I look to symbols to explain my life to me, and one of the ways I understand these symbols is through the use of tarot cards. In both of my last tarot readings, Michael showed up as the 10 of Wands card. It’s a picture of the back of a man carrying ten heavy wands over his shoulder, clearly suffering under the burden of this. In fact, “burden” is the generally accepted meaning for this card. In the summer reading, the burden was in the position of my environment. In this newest reading, the burden was underneath me, below me, always there. When I first saw this card appear, my thought was, “ah, this is Michael,” and he saw it too.

But it is also me. It is a symbol of my taking on a responsibility, and being burdened by it, by the inevitable lack of sleep in this new reality of ours. Burdened by Michael’s illness, by the huge and unrelenting changes in our daily lives, by the extra work and worry that being a caregiver entails.

A friend of mine recently quoted Ken Wilber to me. He is a philosopher whose wife died after five years of cancer treatment. In his book about this time he tells of a woman who had both a terminal illness and was also a caregiver. She told Ken that, “I would have to say that it so much harder to be a support person.  As the person with cancer I had many moments of sheer beauty and clarity and grace and reordering of priorities in life, a new appreciation of the beauty of life.  But as a support person that’s really hard to find.  It was really hard for me to hang in there all the time, to choose to be there, to not feel I was walking on eggshells all the time around the person.  It’s an emotional roller coaster for the support person, and I could only come back to the one thing that really matters: love, just love.”

I’m not saying this to evoke pity. In spite of a strong and easy pull toward feeling victimized, I believe that this is my spiritual practice right now, and that as much as Michael, I have chosen this caregiver path for the growth of my soul. But the words of this unknown woman allow me to fully realize what this change in our life circumstances has done to me as well as to Michael. It has changed virtually everything and I often feel that we are living a “half life.”

And as hard as all of this is, I’ve also been struck by how ordinary it all is. Caregiving, dying and death are so ordinary. It’s not that it shouldn’t be honored, for honoring it is paramount to living this life fully. But people die all the time! Some die of illness, some of accident, some of old age. But it happens all the time, and it is happening to each of us.

Birth and death are really the most true events in this life. And birth and death are so sacred because they show us the place we all come from and the place we all are going. We witness these passages from and to the Mystery with bated breath, with breaths held in wonder and awe. For we know we are witnessing something that is so beyond us that all we can really do is go down on our knees in gratitude –gratitude for the tiny immensities shown to us in each coming and going. And then we come back to love. Just love.

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 leaves me to pondering what one says when faced with a person who has decided to die? I want 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 unnameable. 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 says 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 the body begins to die – the contrast of body and spirit – one in decline while the other reaches toward infinity.

The Storm

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8/05/2016

Enlightenment on the Path of Grief

The Storm

There are things that can’t be healed.

August 5, 2016

Michael and I have begun the long drive home from the Mayo Clinic with heavy hearts and minds. We are both exhausted to the core. Michael has undergone three days of invasive and painful testing in order to diagnose what’s wrong with him. Now we know.

Both of us are silent and thoughtful, in shock really, over what we are being forced to face — not realizing yet that what we are facing is a complete change in every facet of our lives. As we make our way home, I see that off in the distance the sky is growing dark and it looks like a storm is brewing on this hot summer day.

Soon, the wind picks up, and Michael steers hard to keep the car on the road. The sky becomes a furious gloom of the green clouds that precede a tornado. Now, torrential rain, Biblical rain, and a cacophony of lightning and thunder begin to accompany us as we struggle to see the highway in front of us. The rain becomes sheets of water pouring from the sky so densely that it becomes impossible to drive. We stop the car several times because we cannot see to go on.

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My husband Michael is sick. Three days ago, we didn’t know how sick, and our local physician referred us to the Mayo Clinic for a second opinion. I have a premonition that Michael is dying, and I am terrified, but he is not. Or at least seemingly, he is not. He seems steady and calm and I try not to let my own fears take over. We make the long trip to Mayo hoping that the local doctor is mistaken.

Luckily, my eldest son Colin, a physician who lives in LA, “happens” to be at Mayo doing research at the same time as we are there for Michael’s evaluation. I feel this coincidence is providence at work as Colin moves us through the maze of clinics and tests and then sits with us in the endless waiting rooms. He also knows how to talk “doctor talk” and the physician in charge of Michael’s case becomes much more transparent and helpful once my son is in the room with us.

The doctor, a tall thin and serious man, supports the diagnosis of our local doctor and talks us through the likelihood that what Michael has is amyloidosis. Though symptoms can be managed, the long-term prognosis is not good. This is a rare disease that has no cure. The doctor wants to figure out what type of amyloidosis Michael has and which organs are being affected. We are made to understand that a stem cell transplant is the best option for treatment. But first, it has to be determined whether Michael is healthy enough to go through this procedure.

Amyloidosis is a disease that occurs when a substance called amyloids, an abnormal protein, builds up in the organs. These amyloids are created in the bone marrow, the very deepest part of the anatomy. We hear that amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and digestive tract. Severe amyloidosis leads to life-threatening organ failure.

After our first day of anxiety and testing we take Colin out to dinner and we find a good Italian restaurant. But as we are waiting for the food, we inevitably begin to talk about the nitty gritty of our situation. This is really serious, and we start to discuss all of the possible ramifications. Eventually Colin says out loud that Michael could die. And suddenly, Colin is crying and then I am crying too, while Michael maintains his usual dry-eyed stance. Still, I can see that he is affected. We distract ourselves with the food when it comes, eating automatically, and then go back to our hotel rooms and vegetate in front of the television.

After three days of painful and invasive testing that includes a bone marrow aspiration, a fat pad biopsy, cardiac testing, blood and urine tests, and a PET scan, we are exhausted. The days feel endless in their minutiae, their invasions of Michael’s body, and the horrible anxiety-ridden boredom of sitting for hours waiting in one small room after another for the next examination.

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Now Michael continues to drive us through the storm but our progress is very slow. We barely speak since I don’t want to distract him from the road. My other son, Darby, calls me wanting to know what we found out at the hospital. He begins to cry when he hears the news and finally, I can cry the serious tears I have squelched during these long three days. I can cry for this strained and terrible time while Michael drives cautiously through the ever-deepening chaos.

When I look up from the phone call, I find that we are on a highway we’ve never been on before, and we are lost – literally lost in the storm. Michael, who has always been directionally impaired, missed our turn while I was on the phone back in the little town we passed a half hour earlier, and we are going the wrong way. Now we turn around and backtrack, and a bleak long trip becomes even longer as we drive through the endless downpour.

We stop to rest a few minutes in the little town hoping that the rain will ease up. We’re hungry and tired but the only restaurant that is open is the Dairy Queen and neither of us can face it. The weather map looks like we haven’t even hit the center of the storm yet, and in fact, that center is following our path down the road toward home. We decide to go on, hoping we can outrun it.

Finally, we are on the right road but just as we leave the town we get an emergency call from our local doctor. She says that in the testing they did, they found something wrong with Michael’s heart. She insists that Michael must pull the car over to the side of the road immediately. He is to stop driving because he could go into cardiac arrest “at any minute without warning.” Michael pulls over and I shakily get into the driver’s seat. He has always been the driver in our relationship, preferring to be the one in charge of our vehicle while I’ve been content to ride along, enjoying the scenery. Now it looks like I won’t be enjoying the scenery as much as I used to.

As I take the driver’s seat, the center of the storm catches up with us. Clearly we are not able to outrun it, and I can’t see more than a few feet in front of the car as we slowly make our way down the highway. On top of the terror of this storm, I’m terrified that Michael may actually die on our way home. “This is a nightmare!” I say. Michael agrees and offers assurance that his heart is fine. But I know that his assurances are pale and meaningless.

Now the sun is going down and soon I am navigating on the interstate in complete darkness – the only guidance coming from the lightning and the other travelers’ taillights as we move cautiously through the raw chaotic power that surrounds us. My shoulders hunch together and my eyes feel strained to the breaking point. I can barely see. Trucks thunder by, leaving our windshield drenched and opaque, leaving me literally driving blind. My whole being tightens to steer us through the stark horror of this night. It’s as if the very atmosphere is echoing our journey into unknown territory.

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When we see our doctor again, Michael is finally diagnosed with AL Amyloidosis. The doctor explains that Michael’s bone marrow is producing misfolded proteins that are unable to be used by the body. Because of this, the unusable proteins end up collecting in the body’s organ systems, and the doctor is particularly worried about Michael’s heart. He wants us back again in a week for more testing in order to determine the extent of organ damage.

The doctor also recommends a stem cell transplant along with chemotherapy. We are relieved to hear this since it is the only treatment which has shown any real promise for this disease. However, we are also made to understand how sick my husband will be after this transplant — literally at death’s door with no immune function and in strict isolation.

I’m so shocked that I cannot cry. Michael does not cry either, but then he never cries. I am the one who expresses emotion in our relationship, but this emotion is simply too much. Thankfully, Colin gets the details about the treatment — things like timing, medications, and procedures. At the end of our stay, the doctor emphasizes the importance of a quick response which makes our local hospital’s slow appointment plan look inadequate and scary.

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I am half hysterical as we reach the town that is thirty miles from home. During this entire three days I’ve been thinking about the spiritual truth that is insistently coming forth to be seen.

In the spiritual belief system that Michael and I share, we believe that to some extent, we are creating the reality in which we find ourselves. In other words, consciousness precedes manifestation. And though we may not be aware of what we are creating, it is our creation, nonetheless. It is really hard to take this in for it means that Michael is creating a disease that will likely kill him, and I can barely find the words to speak of this. It may mean that at some level, Michael wants to die.

In spite of still being terrified, I speak calmly the words that I feel must be said. “Some part of you is playing with death right now. And it’s in the very marrow of your bones. It’s the deepest part of your physical being, Honey. The deepest part of your body is trying to die. We have to face this.” I say this without any sense of blame or anger. It is just a fact — part of him wants to die.

Michael pauses for a long moment and says, “You have to die to get a rebirth.” Of course this is true. It is even a truism within the metaphorical language that guides my understanding. But death and rebirth can happen at many levels, from the mundane to the profound.

If this is the death before the rebirth, it is a harrowing death, as perhaps most deaths are. But the rebirth could be into a new and healthier life and a new and healthier relationship between us. And just as possible, it could be Michael’s journey into the final letting go of his sick and burdened body. We don’t know. We cannot know.

Finally, we reach home. As we get out of the car the rain magically stops, and the dazzling clear light of stars appears overhead. We are both grateful and heavy-hearted — knowing that for now, the storm is over.