*Note: it took more words than I was expecting to get the following information out there. You might want to piddle, put the kids to bed, make yourself a snack, find a comfortable place to sit, turn on your computer instead of just using your smart phone. You might want to get reading glasses.*
I was lounging in the bath late on a recent afternoon, the water thick with heat and Epsom salts, the spring air ebbing and flowing around my head through the cracked window. I had gone rock climbing in the morning, and had just returned home from a massage. My mind drifted, floating on swirls of energy as my body floated in water and air. I was perfectly primed for an epiphany.
When it came, it was, at first glance, small. The earth didn’t shake, and I didn’t gasp out years’ worth of self-inflicted pain. But I felt something deep inside my heart begin to unwind.
Maybe we put too much energy into trying to find perfect PHYSICAL health, I thought. Maybe what’s more important is actually something else. Emotional health. Spiritual health.
My eyesight is compromised. For a few years now, that’s how I’ve been perceiving my ability to see—as compromised. The degeneration of sight in my right eye, the cyst on my retina that distorts the picture that my brain receives, began with full-brain radiation in 2008, progressed with little or no positive response through various eye treatments (including the oogy injections right into the eyeball), and stabilized sometime last year. A cataract that formed as a result of some of the steroid injections was removed in October and, now that my glasses are updated (normal distance+astigmatism correction in my left lens; progressive distance-to-near+astigmatism correction in the right), I see pretty well. I’ve been assuming all along, since the beginning of the eye trouble, that it would someday reverse, and my eye would go back to the way it was. I had an insight sometime last year that the pocket of fluid represented unshed tears . . . but then, I’ve shed so many tears and it’s still there. Someone suggested that it wasn’t tears, per se, but just a representation of something I hadn’t yet “seen”. Certainly, a distortion of exterior sight can lead to a greater need to recognize insight.
For a few days before my bath, I’d noticed myself expecting my right eye cyst to “heal”, and yet I noticed at the same time that I hadn’t had the same expectation for my long-term nearsightedness and astigmatism to resolve. Why have I been judging one sort of issue as something that I could and should fix, and the other as a non-issue? It’s because the cyst developed because of cancer, and I’ve been trying my level best to heal my body—completely—my body completely—so that I can go on with my life. I’ve been looking for the perfectly healthy body, the perfect score, the 100%, the A+ on the essay, written after missing the entire two-day lesson, with the scrawled note from my Satire and Advanced Comp teacher: I hate gifted kids!
I want to be a gifted kid again!
But . . . bodies are not perfectly healthy. There’s no such thing. Or, instead, bodies are always perfectly healthy, because they are always behaving how they are supposed to behave, for us to learn the lessons and fulfill the contracts we encounter on our life paths. It’s one of the paradoxes of existence: we are perfect exactly the way we are; yet we are in constant flux, working for perfection.
I was talking to my father-in-law at dinner the other night, about a concept I learned in one of my sociology classes at Lewis and Clark (maybe the only concept I learned from my bachelor’s studies). Ian was out of town at a conference and Dan had just arrived back in Seattle after spreading some of Janet’s ashes in the Southwest. We were sober, contemplative, discussing travel in space, as well as travel in time, and I was reminded of the idea of liminality. Liminality, in its most basic definition, refers to a space in between, and often describes the transformational elements of ritual. It’s a transitional space, a threshold between one state of mind and another; one physical place and another. It can be interpreted as the absence of something else—we’ve left Seattle, but we’re not yet in London. Our focus jumps from point to point. The lesson, though, for me, the lesson I learned by learning the concept, is that the spaces between those points, the liminal spaces, can be just as dense with information and experience as the points. But we don’t look there; we’re excited about London.
Taken to its extreme, life itself could be seen as a liminal space, the threshold between two points: birth, and death. All the more important, then, to pay attention along the way.
I recently made the choice to stop cancer treatments. It’s a good time for this decision, if one is looking solely at a snapshot of my physical health. My CTs and MRIs and MUGAs are stable. My blood tests, even the two tumor markers, are all within normal range. I am as healthy as anyone else. My allopaths, Dr Specht and Dr Jason, took the news of my choice gravely. They don’t see the snapshot version of “perfect health;” they see the range, over 14 years, and especially my brush with death in 2008. They have found a medication I’ve responded well to, a safety net, and they would prefer that I stay on it indefinitely. I am humbled, and honored, that they speak honestly with me, and that they accept my decisions with respect. They are both good people, not just excellent physicians.
The trial drug that I had been taking, TDM1 (the trial known, serendipitously, as Amelia, which is what I’d named my self-cooked emulsion of medical marijuana), was approved by the FDA on 22 February. A friend of mine emailed me with the news, saying “I’m sure you already know this, but . . .” but I didn’t—it’s not the kind of thing that I follow. My instinctive reaction upon reading her email, though, was I guess I don’t need this anymore—I’ve done my part.
Drug approval doesn’t automatically end the trial—patients receiving the drug continue to be followed, and the drug continues to be paid for by the research body, so I didn’t need to worry about my insurance balking at the $9000+ cost per infusion. Nevertheless, when I went in for my next scheduled treatment, 28 February, my body told me what my mind had already indicated: I was done. One of the magical aspects of TDM1 and other smart drugs like it is that the side effects are almost exclusively limited to those experienced with Herceptin, the engineered antibody that is the driving force in the molecule. A tiny amount of Emtanzine, the toxic chemotherapy part of the molecule, is released on arrival at the tumor itself. The result is that very few healthy cells are affected by the chemo, and Herceptin has very few associated side effects.
I have been on Herceptin for about nine years all told, and have had no problems with it when my dose is administered over 90 minutes (it can be administered in 30 minutes, but that’s never been comfortable for me). This was true with the TDM1 version as well, until 28 February when, within 10 minutes of beginning my infusion, I began to feel asthmatic and short of breath, as if the infusion rate was too fast. My nurse checked, but the rate was as usual. I went back to my crossword, but within another five or ten minutes, I realized my breathing was rapidly getting worse. My body was rejecting the drug. I was having an allergic reaction! My body was confirming what my intuition said! My nurse turned off the drug, ran some saline, and within 30 minutes I was breathing clearly and my vitals had returned to normal. Dr Specht came up to the infusion room to check on me, worried that I’d had a stroke or a seizure, but I was fine.
The euphoria of this realization—that I could hear and heed my information—faded over the next three weeks, as the potential of this particular information, the gravity of the choice it presented to me, set in.
My decision solidified during the first three weeks of March. I was primed for epiphanies of dislocation and renewal, as we had vacated our home for the month and were living with Friends L&S, and Dog Friend Jessie. We were having our floors redone after 13 years, and I took advantage of the need to move our furniture to take on repainting. Ian and I had stored all our “stuff”—books, clothes, tchotchkes, crap—in boxes in the basement, as the work was all taking place upstairs. We did some culling while we were packing up, but time constraints convinced us to save most of it for moving in.
So, out of home, consciously and physically redecorating, rebuilding, strengthening, reëvaluating. Ian traveled for work a lot in March also, so I didn’t have the family sense of home with me much, either. On a Sunday afternoon in mid-March, I dropped Ian at SeaTac for a week away. That night in bed I thought to myself: what would I do tomorrow if I woke up and I was healed? If I KNEW the cancer was gone? And I thought: I’d do exactly what I have planned—I’d go horseback riding, and then I’d go to Gyrotonic (I’d take a day off from painting!). But then I felt a deep, subtle, insidious fear. I would NEVER know I was healed. A picture of Dr Specht swam across my mind. I sighed, rolled over, went to sleep.
The next morning, Monday morning, I decided to try again. I thought to myself What would I do today if I knew for sure I was healed? And my first response was I would go back to sleep for a couple hours because I am TIRED, and then I’d go to the fabric store nearby and look for something fun for a project I’ve been wanting to do. And then I thought, because I wouldn’t have to prove anything anymore.
A realization of how I’d been living my life for the past 14 years—for my whole adult life, really—crashed over me and left me breathless. I realized that much of what I did during my days I was doing IN SPITE of cancer. I really was. I had tried not to use that language—spite—but I had built a structure around a central core of cancer. A structure of chicken wire and plaster, ornate, magnificent, flamboyant in color and shape and style, infused with cancer throughout. I can travel, I can kayak, I can horseback ride all alone in the woods, with moose and bear and coyotes and cougars and wolves. I can fill my days, my weeks, my years with busy-ness. I built, I created, a fear of rest: a belief that if I allowed myself to be tired, I was allowing myself to succumb. I was allowing myself to fail.
Death by cancer seemed to me to be the ultimate, most useless form of failure—the failure of a smart person who simply didn’t apply herself.
“I’ve built up a structure of chicken wire and plaster,” I explained to Dr Specht on the 21st of March. “Not the best building materials in this climate.”
“But I thought you were living life to the fullest, so well!” she exclaimed, her concern for me, the person, evident in her voice.
I had done that, but therein lies another paradox: I had built a life of things I loved, yes, but I had come to the point where I was doing them with the pugnacious franticness of someone acting increasing reactively instead of thoughtfully. From the beginning, I could have succumbed to cancer and all the excuses it would have offered me to be lazy, to be depressed, to be unproductive. I was 26; my community would have understood if I treated cancer as a tragedy and myself as a victim. I didn’t, though—I looked at cancer and said “NO. You don’t get to control me.” But I realized, within the last few weeks, that I had given it the power to do just that.
Ian suggested a good metaphor the other night. “What you’ve been doing is using a measuring tape to create your life at a distance from cancer,” he said. “You could’ve gone straight to living your life right around it,” he went on, “but instead you’re living your life at various distances from it. It’s still at the center,” he said, “and that’s what you’re trying to change.”
I’ve been keeping up with my Tarot and I Ching and meditation time, and the cards that I’ve drawn or the coins I have tossed have continued to be immediately, substantially, appropriate for my life. Every time I sit down I am offered, should I choose to accept it, insight and guidance from these sources. I accept it. I learned long ago that if I didn’t like a response I should look at why; an extension of that insight is that, if something internal gives me a jolt of fear, I send my consciousness directly there to find out what I’m afraid of. It can be discomfiting to live with this compulsion for self-examination.
I learned more recently to also look at why I liked certain responses. Awareness, rather than mere acceptance, goes both ways. I can trust my oracles no matter what information they provide, and they are helping me learn to trust myself.
During the week Ian was in La Jolla, my untethered soul used his absence to good effect. One evening I drew two cards, the Two of Swords and the Midas Touch. I was having a mental conflict (two of swords), and it was because I didn’t trust myself to make a wish. I was afraid that I would wish, like Midas, for everything I touched to turn to gold, to disastrous effect (he ran to embrace his much-loved daughter, and turned her into a statue of gold). Or more specifically, I was afraid that a wish for health would have disastrous consequences that I hadn’t foreseen. Fear of the unknown. Fear of myself.
The next night, a Wednesday, I made myself—and allowed myself—for the first time, to dive into my definitive, foundational fears. I was very alone; Ian was gone, a person I had asked for assistance had not yet responded, even Spackle had left my side to sleep in the living room. What if I am wrong about the Universe? What if all this spirit stuff really is bullshit? What if I die? I wrote, gasping and sobbing, in my journal. I’ve built my life around cancer—what would I even do without it? Who would I even be? What if I live and that means I have to get a job to replace cancer, and WHAT IF I HATE THAT JOB??? What if everyone would be happier if I DID die, let the drama of my life fade into the past, as we were, partly, sadly, embarrassingly, relieved when Hoover died? Our lives were so much easier!
It was a true Gethsemane moment for me. I had gone into the darkest of my fears, all alone. I fell asleep, exhausted. Drained. Empty.
The next day I woke from a dream of leaving my favorite lesson horse, Gjinger, tied to a blue horse trailer at an equestrian event. In the quirky way of dreams, the person I notified, so that he could find Teri and have her bring Gjinger back home to Phoenix Farm, was Kenneth Parsell, the NBC page from 30Rock. He showed me a rack of Wranglers that he was going to try, as he had just decided to take up horseback riding. I told him Gjinger was a lovely horse, and maybe he could start with her. In a morning chat with Ian, he suggested that maybe stopping riding for a while—one of the things I was doing in spite of cancer—was a good idea.
I felt quiet, cautious, abraded as I went about my day. I climbed with Friend T, painted more walls back at home. Listened to music. That night, I revisited my journal, read over my crushing fears of the night before, and felt nothing. I had released their power over me. I still felt tentative, my light dimmed, but something suggested tarot. Okay, Universe, I thought, suspiciously. If you’re for real, let me know. I drew four cards.
First was the Archangel Gabriel, who blows the trumpet of Rebirth.
Second, the Four of Hearts, which depicts a shipwrecked mermaid. Her entire focus is on the ruin in front of and all around her. She has not noticed three friends, riding dolphins, on their way to assist her.
Third, Major Arcana card XX, the second to last, in this deck depicting the Three Little Pigs, and symbolizing the need to build a strong house. Brick, on bedrock. Not wire and plaster on shifting sands of ego and arrogance. In other decks, this card is Judgment Day, when Gabriel blows the trumpet of Rebirth. Gabriel, who helps humans unite body and spirit (okay, I get it! Rebirth!). The planetary ruler is Pluto, symbolizing the descent to and return from the pits of Hell.
Fourth, the Eight of Wands: eight fairies in a semicircle around a bonfire, holding their wands into the flames, recharging them as they invoke the birth of a new consciousness.
Okay, FINE, I wrote in my journal. You are out there. Guidance exists. I laughed, but a bit grimly. I had been through a lot.
That Friday, I had a great ride on Gjinger, then I told Teri I was going to be taking some time off from riding to revisit my life. I planned to rebuild my structure with the materials that I wanted to use—not in spite of cancer, but completely unrelated to it. The more portentous choice was the decision to go off of chemotherapy.
I had wondered, briefly, if I could separate, emotionally-spiritually-mentally, CANCER from CANCER TREATMENT. Some of me agreed with Dr Jason and Dr Specht, and wanted to hold onto the safety net. In the cancer treatment world, an allergic reaction to a drug doesn’t end the game—you add medication. You take pre-meds. Benadryl or Decadron to turn off your body’s reactionary instincts. But I realized that I could not separate the disease from the treatment. The idea of adding a medication to make my body accept one it clearly didn’t want made me feel ill, thick in the gut. If I were going to demolish my life so that I could rebuild a solid structure truly representing me, then I really needed to get to bedrock. That meant pick ax, sledge hammer, pressure washer, chisel, scrub brushes, and a lot of mental elbow grease. That meant almost nothing even tangentially associated with cancer.
Getting down to bedrock and restructuring meant, as well, recognizing as many possible outcomes as I could, and trusting, trusting, that any one of them, or even ones I couldn’t imagine, would be okay.
If I truly don’t need chemotherapy anymore, and I’ll live another 40 years without it, and without dealing with cancer, that will be okay. Maybe I get a job, but it will be a fulfilling one that I will love. That will be okay. Maybe, instead, I’ll find a focus, a job, that I need to do, but the cancer comes back, and the only way to continue doing my job is to begin chemotherapy again. That, too, will be okay. Maybe, instead, I will find that the cancer returns, and that I can’t bear the thought of resuming treatment, and I die. Even that will be okay. If I am truly doing my best to know myself, and choose according to that knowing, it will be okay.
As for the cyst in my eye, the pale, slightly bowed line across the right side of my chest, the lumps on my left shin, the snip of a scar on my scalp, the divot on my cheek, the gray in my hair, the ache in my thumbs—these are badges of honor, of experience, of success. These are signs of a perfect body.
I have a limited amount of time here, in this body, on this Earth. I don’t know when that end point is, but I intend to learn, and create, and pay attention to, and marvel at, and mourn, and revel in, and ruminate on, all the elements of the transition of life on this planet--all the elements that I am fortunate enough to encounter--to the best of my evolving abilities.
I trust that I will continue the breathless joy of my implausibly spectacular ride, and I trust that the end will come at the right time.