A Caretaker's Notes: Fortitude

An update of our journey. A change in treatment. How we coped. What books sustained us. What adjustments made.

When Things Fall Apart

If your partner is going through hell, sometimes the best you can do is make it a well organized hell. We had meetings, the three of us, Catherine, her brother Steve and me. We had it all scheduled out who would drive when, who would do errands, who would feed the dogs. Steve and I found efficient ways of updating each other, keeping to just the facts, what we needed to know, where best to park, what doctors said, what to expect. When things got more hellish we talked about how Catherine was feeling hour by hour, what might improve her situation, how best to think about it all.

By the six week of chemo we had gone through all the solutions available to cope with the side effects of nausea. Catherine ate so little she lost 20 lbs (pounds she wanted to lose, but not quite like this). She was beginning to become a medical mystery. Only one other person in the study had had a reaction to the new drug in this clinical trials, but even so not quite this bad. This did not help her confidence and her anxiety went through the roof. After the first round, she went to the infusion lab everyday to get hydrated. I sat with her, folding intense origami models of dinosaurs, zoo animals and a mouse (my nickname animal) on most of those days. The nurses gave her fluids and whatever else might make her feel better while the origami helped me stay calm and allowed my thoughts to flow on an even keel as my hands stayed busy. 

It seemed very important at the time that she continue the full course of the chemotherapy. It would, after all, increase her life expectancy to 76%. It had already proved to be working. Her 2 cm tumor was considerably smaller. But by the end of the second round Catherine feared that she would not be able to endure 4 more rounds and this weighed heavily on all of us, for we believed she would be cutting her life short if she didn't continue. This was, after all, the aggressive, triple-negative cancer able to pop up anywhere.

During the many days we had to think about what she would decide, I sorted out the daily events in my journal, kept most of my thoughts to myself and some arguments in my back pocket about why she should continue. I shored up my stamina with correspondence to friends. I had a confidant who had also been in the caretaker position with her partner some years ago, and I could freely complain to her about the situation at hand. I went to karate class to restore a sense of normalcy and feed energy into my body, kicking and punching for 90 minutes. I felt guilty about being the healthy one, able to escape to do something fun while Catherine spent every waking minute contemplating her illness and, in turn, her mortality. She seemed genuinely happy that I was able to get out, asking how it was when I returned. And so every weekend  I took off for events and activities or worked with clients.

I reminded myself that I needed the change of scene, that I wouldn't be able to maintain my equilibrium if I stayed home worrying about things. It was not my habit to worry about the future, but under such dire circumstances the impulse to worry was out there lurking on the periphery. I would feel it at the corner of my brain. It would just be two thoughts beginning with "what if" and quickly it would become a cluster of thoughts with a runaway narrative of overwhelming misery, the end of a life and all the changes that came with it. It was not my job to figure all that out, I reminded myself. In fact thinking was fairly useless. And second guessing even worse. Was what Catherine experiencing real, I would sometime ask myself? Or had her perception of reality changed? It was hard to tell because she was so anxious. 

When my dad underwent treatment for cancer he often had complaints that seemed randomly unfounded and many were because, being Aspergers, his view of people was already skewed. But one day he complained that he couldn't stop moving his hands in a circle. And yes he was moving his hands as if he was dancing the hula. This was so odd, I discounted it, but then it turned out to be a typical reaction to a certain drug, but only one doctor was able to pinpoint that a few days later. So I made a note not to discount anything the patient complained about. I would only relay information. Nor was it my job to figure out solutions. How could I? It was not my job to cure cancer. It was not even my job to make Catherine do anything she didn't want to do. Gently suggest, discuss, negotiate perhaps, but nothing that might be viewed as a demand.

This last realization was a gift from a survivor, one of my colleagues. (She happened to call me on a job with her during the first round of chemo on a day off from the lab.) This plucky woman had survived a horrendous 35 lb tumor. I didn't know that detail yet, but she had revealed to me, early in our relationship, that she had had cancer not too long ago. So, over lunch, I told her of my worries and she assured me that it would be alright, that I didn't have to make Catherine eat or get up or do anything she didn't want to do. That she too, had lain, as if at death's door, and she still managed to recover her full health. And she had; she was one of the busiest women I knew.

I was relieved to cross nagging off my job description. And along with nagging, I crossed off worrying. After experiencing how those "what if" thoughts could snowball, I steered clear of them. I would stay in the moment with an open mind ready for anything. I had had plenty of practice with my clients. (Paper overwhelm was not a whole lot different from cancer overwhelm; it was still about a person's emotional assessment of their own situation, their self-expectations and lack of context.) Being in the moment, under these circumstances and at this length, had its price. My short term memory was shot. Anything not urgent fell off my to-do list. I became more sparse with my words. More to the point. I had not told everyone what the situation was, but because of the forgetfulness I had to inform more people so they could help me out with remembering things I was responsible for. I learned to delegate. 

It Takes A Village

After writing my first piece, I received many kind offers to help out in any way. So too did Catherine when she took leave of her job, her volunteer position, her meetings with her spiritual group along with all her other activities. Between us we had a vast network of friends and a wealth of communal resources. Catherine, herself, was awed by all the support, the well wishes, prayers and positive thoughts that were pouring in. We didn't actually need help in the conventional sense since neither Steve nor I had full time jobs taking up our time. (Steve just wanted to finish out his course work for the semester.) We had everything covered as far as mundane housekeeping chores, driving Catherine to doctor's appointments, meal preparation, and errands. What I mostly needed was moral support. As offers came in I asked friends to take me out, share with me their cancer stories, their caretaker stories, but mostly offer me a sense of normalcy, of life carrying on. 

As Catherine became more beaten down by the chemotherapy, she withdrew. She stopped watching our Sunday family hour TV shows. When I asked why, she said it all seemed trivial. I could understand how the effort to suspend disbelief was too much for her present circumstances. We used to be voracious consumers of media, going to movies every week, watching them at home; it was a shared passion. She couldn't sustain her attention for so long anymore and didn't want to go anywhere. Nor did she listen to music. Sustained conversation was too much effort. We drove to the lab in silence. Often I would find her sitting on the bed staring into space. It was a little eery. I came to think of her as a chrysalis, a caterpillar struggling to come to terms with its transformation. It was one of my favorite metaphors because of the part about the caterpillar trying to sabotage the butterfly by destroying the imaginal cells. It reassured me that even if you aren't entirely committed to a beautiful outcome, it didn't negate your chances of having one. I just had to be patient and sustain myself in the meantime.

I did not always know how to ask my friends for help apart from being a ready ear. (I spread out the job so no one person had to answer all my e-mails. I had maybe six or seven friends each handling a different type of concern or perspective and each checking in as they wanted to so I never had to initiate a conversation. I didn't realize how well this worked until half of them went on vacation.) For company I posted nearly everyday to Facebook and someone would likely respond. When I did have something I wanted help with, I spoke it aloud to the invisibles, the spirit world, mostly when I was riding my bike home from karate. I was sure they were readily available because every morning when I took the dogs for their walk I greeted them by category. 

"Hello divine creator, agents of creation and archangels," I began—the list goes on to include the higher self, spirit guides and teachers. I got this ritual from a book on accessing your intuition. (The language was a little on the Catholic side for my tastes, but I couldn't yet come up with alternative titles.) I thanked the invisibles for a fresh new day and whatever natural element happened to catch my senses. (It was turning out to be a beautiful summer of clear skies and cool breezes.)

When I had a new problem to contend with and no ready solution, I explained it out loud to this invisible community and asked for their help. A thought would come to me to contact a specific friend and ask them to call. I was catching on that I was being given my answer. Sometimes a symbol such as a billboard would come into view, as I was driving, to confirm a possible solution I was entertaining and I would know to push this solution forward. Then I would go home check my e-mail and whoever happened to write to me that day would be exactly the right person to ask about implementing that solution. It was all very efficient. I was asking for help with Catherine's situation, but I was also being helped with my responsibilities with other commitments though I hadn't specifically asked. I would find myself wandering around until I came to a bookstore with exactly the books I needed to research for a given task. I said "thank-you" a lot.

Book Therapy

Books were also a popular resource that people liked to offer upon hearing about a cancer diagnosis. Everyone wants to help cure cancer, sending me suggestions regarding herbal remedies, TED talks, healing affirmation statements. As far as alternative cures were concerned, I was quite fond of the mushroom research because I was already familiar with the mushroom guru, Paul Stamet and now he had cured his mother of cancer. But I wouldn't bet Catherine's life on it just yet. 

Most of the books suggested were storehouses of health regimes, diets, supplements, attitude adjustments and other lifelines that I suspected the people who recommended the books were hoping would keep the Cancer Beast at bay for themselves. I was intrigued by what our community considered to be true in terms of health. The most popular was The Cancer Study by T. Colin Campbell a nutritional biochemist, and his son and the parallel documentary on the subject titled Forks Over Knives. These two offerings implied heavily that a vegetarian diet would cure cancer. I was willing to believe that a traditional American diet was killing us, but the claims that a vegetarian diet would eliminate cancer was purely conjecture based on corollary evidence that was ultimately meaningless, I concluded, when another friend linked me to a rebuttal. In the book, it was noted that Asia had a largely vegetarian diet and the lowest incidence of cancer, but though I was proud to embrace such a statistic, it wasn't my experience that vegetarianism was widespread in Asia. To me there was something else afoot.

Other books in this same vein also leaned heavily on a vegetarian diet, holistic medicine, natural supplements, exercise and a positive attitude. These books are not for seriously ill people. Their suggestions are simply too much work to implement. And they armed the patient with multiple reasons for beating themselves up with sins of the past. In the eyes of a cancer patient the message of these books were the same—you wouldn't have gotten cancer if you had followed all these regimes, avoided all the poisonous chemicals in the world, weren't so negative and didn't work so hard while putting everyone else's welfare before your own health.

The only book Catherine actually read was written by Toni Bernhard, a woman we had heard speak at our Buddhist meditation center. She had chronic fatigue. When she came down with this mystery disease, she had to reorganize her life around it and her Buddhist practice helped her to cope. So, at much cost to her daily allotment of energy, she wrote a book about what particular Buddhist practices she found most helpful. She called the book How To Be Sick and it did help Catherine to adjust to her illness and adjust her meditation practice to her illness.

The first book I found helpful I came across at the Cancer Center Library. It was a memoir in cartoons by Miriam Engelberg, a breast cancer patient and was called Cancer Made Me A Shallower Person. The author, like Catherine was given to intense bouts of anxiety. Her self-reflection and self-deprecating humor helped her cope while offering me much needed context for this whole cancer experience as seen through the eyes of an anxious patient. I showed it to Catherine; she smiled for a few pages then said it wasn't funny if you had cancer and handed it back to me. (That was one of her most physically challenging days ending in a hospital stay to try and find out what could be the cause of such severe nausea.) 

That day I also found another book to be helpful, recommended by a friend. Called Full Catastrophe Living, it was by a popular Buddhist meditation teacher, Jon Kabat-Zinn. There was much in it that addressed how to keep anxiety at bay, confirming my thoughts on the subject. Later someone would recommend it to Catherine and she read some of it too.

The Buddhist books did not keep my interest. But, while looking for Full Catastrophe Living at the library, I found near it a book called Defy Gravity. Just the cover alone compelled me to take it home. Written by Catherine Myss, a medical intuitive, it talked about disease as a component of destiny and your soul's journey in the world. On a cosmic level, it made sense that disease was how the soul was informed that it was heading in the wrong direction. The experience of disease (or other misfortune) could also be part of a plan to ensure that the soul would fully experience the necessary soul growth during incarnation. Thus disease was one of life's mysteries. It was no good trying to think about it with the rational logic of cause and effect.

I could just imagine my soul self sitting on the astral plane planing my life in committee with my soul mates, and plotting a handful of life challenges in order to make sure I got off my butt to do what I was supposed to do in this incarnation. The random theory of disease favored by my largely science based, non-reincarnation believing American community shut the door on such possibilities. It also shut off the possibility of learning something mind expanding. So much did this book satisfy my mystical sense of the cosmos that reading it was nearly a mystical experience in itself. I was catching a glimpse of cosmic logic and the non-linear, non-logical path of healing. I immediately checked out two more of her books.

Finally it was a book by a doctor, Victoria Sweet, that sustained me in the role of caretaker. Called God's Hotel, the author offered an easy to read narrative thread and a helping of pertinent information about doctoring, plus a piece of San Francisco history in her account of the last remaining alms hospital in the country—Laguna Honda Hospital. The many stories about patients and their healing processes underlined for me the importance of allowing the healing process to unfold in its own way and to give it as much time, nurturing and experimentation as necessary. Medicine was not an exact science. It needed to be adjusted to each patient. There might be mistakes made and set backs, but despite such challenges, even the most damaged patients have a chance. I rode on that book as on a life boat.

Respite

With support from a group of spiritual practitioners handpicked by our dharma teacher plus other spiritual buddies, Catherine felt brave enough to go forward with her treatment as planned. But, in the end, it was the oncologist who made the final call. He couldn't in all good conscious continue to prescribe her the treatment, he told her. Since they had nothing else to offer in the way of controlling the side effects he didn't see how she would endure 4 more rounds (12 more weeks). Her team all acknowledged that suffering five back to back days of nausea would be enough to make anyone want out. 

It was more important for her to be in good shape to withstand surgery. Then, after surgery, the oncologist would prescribe a different chemotherapy that wouldn't be so hard on her. It was not her fault that they couldn't make this particular treatment work for her. That was the thing with new drugs; they were an unknown (and she had just given her body to science to help figure it out). The survival rate of 76% was not contingent on her enduring this particular treatment, this particular drug. The standard chemotherapy would do. I was relieved though Catherine worried that she wouldn't do much better on that chemotherapy either. For now, at least she would have a chance to recover from the side effects, regain some of her strength. 

She had over a month to recover. (Surgery is on July 16th.) Without the daily stress of the chemo regime, my memory came back to its usual functionality. Slowly, after two weeks, Catherine felt more herself again. We worked on eating. Later we would work on exercise. We took things one day at a time. 

Something in me was changing, firming up. I felt different as though a transparent blue/green wetsuit had gelled over my body/mind like a protective glove. Nasty creatures there might be in this ocean, but the water was fine.