Maybe I'm Not So Unusual After All

This article in the New Yorker (which I don't seem to be able to forward in its entirety, or maybe even at all) isn't about cancer, but it sure does hit home about chronic disease. 

In the Dark of the Night

Fortunately for us up here in Seattle, particularly when we’ve been spending several months immersed in an existential crisis, the dark of summer nights doesn’t last all that long. I can tell the season is changing, though: catalogues full of fall fashion are cluttering our mailbox almost daily, for one thing. I’m happy about this, as fall is my favorite clothing season, and I’m going to have to buy a whole new wardrobe this year. A year ago fall I weighed about 30 pounds less than I do right now (which was obviously too little for long-term sustainability), and I’m eager to fill my shelves with new trendy and commodious garments. This may even extend to shoes; I’ve had a recent meeting with a podiatrist (Dr Floyd) for the first time in 30 years, and have ordered orthotics to help slow the growth of my walnut-sized bunions and, more to the point, reverse the increasing hip pain I’ve been enduring due to an ill-aligned foundation (flat-as-flippers feet).

One benefit I've garnered from several months away from Western cancer treatment in that I have found the spare energy to go into a new clinic situation. It was such a pleasure to talk to a professional who was happy to see me as a plain ol' live person with plain ol' solvable issues. I think Dr Specht sees me more like a ticking time bomb. She had finally found the right wire to cut and was ready to clip it and step back for a huge sigh of relief when, like any grade school bully, I snatched her toy away from her right before her final move. I am mixing metaphors and using poetic license here--she know my body is mine and I get to choose what I believe is right for it. But she also worries.

I had an appointment with Dr Specht at 4:00pm Thursday afternoon, and this appointment had been weighing increasingly on my mind, my heart, and my spirit. I’d been living with an accelerating, anxiety-inducing, almost debilitating dread of what she might tell me that day (this even though, aside from the dread and anxiety I can’t squeeze off, I’ve had a glorious summer). I chose to stop treatments last February in part because my intuition told me to, and in part because I was roundly sick of them, but also so that I could build a little bit of vacation from that reality. One thing I’ve learned over several years of far-flung travel is that stepping out of one’s day-to-day existence offers a chance to look at one’s life philosophically. Who am I far from triggers and habits? What of this travel-person would I like to keep upon my return? I decided that this year, the year that I’m 40 and on the top of my life’s theoretical curve, I wanted to be mostly at home. I wanted to see what intangibles I’ve kept from my travels across the world, and see if I could figure out how to recreate the benefits of stepping away from my triggers and habits, while staying in them.

This has been far, far more difficult than finding a bus on River Road in Nairobi or a hotel in the not-touristy-at-all-and-therefore-no-English-is-spoken city of Petchaburi, Thailand. I want to be making health decisions from my whole self—mind/spirit/body—that will benefit my whole self. But I have had a devil of a time finding even a millimeter of distance from my grief and terror and frustration at being a chronic cancer patient. I’ve been hoping that, by taking several months off from the constant triggers of clinics-doctors-infusions-scans, I’d be able to find a blessed bit of objectivity. It’s hard to deal with dashed hopes every three to six months. Year after year.

Wednesday, my day began poorly with a disappointing ear appointment. One of the side effects of the full-brain radiation I experienced in 2008 is that the thin, delicate skin lining my ear canals has become more delicate and, I guess, brittle. After ear infections in China a year and a half ago, bits of bone became exposed in both ears. It’s exceedingly dangerous to have exposed bone in one’s body. The skin is a well-designed rubbery, breathable bandage that, mostly, keeps the blood and guts and bones aseptic as well as contained. The risk of infection really close to the brain is high in the ears. For the past 18 months, I’ve been diligently coddling my ears: ointment daily, Vaseline-soaked cotton balls when I take a shower, earplugs only out of absolute necessity when I’m having a brain MRI (ANYTHING foreign carries a risk of damage or infection). Exposed bone can’t get wet (risk of infection), so I’ve been keeping my head above water except for one leap into the lake this summer (brand new earplugs firmly installed) to celebrate a cousin’s 40^th. I’ve been trundling along to my quarterly ear-cleaning and monitoring appointments, mildly uncomfortable with the snooty atmosphere at the UW ENT clinic check-in desk, but gamely continuing so that someday I can shower again without getting grease all over, or leap into a pool, or practice rolling a kayak, or waterski. So I asked Larayne, the NP who does my ear maintenance, what sort of timeline we were looking at here. As it has been a year and a half.

“Well,” she said, “the area of exposed bone in your left year hasn’t changed size in several months. It’s not red around the edge right now, so it doesn’t look infected! The right area of exposed bone is smaller, but see this line of redness here? It’s a tiny bit infected.”

“So . . .” I said, “what does that mean?”

“It’s not healing on its own,” she said. “Remind me, did you have radiation?”

“Yes, full-brain in 2008.”

“Okay,” she said, “that’s right. That’s why we haven’t talked about a skin graft. With the radiation, it’s unlikely it would be able to heal anyway.”

“So . . .” I said, “this is it? I have to keep my ears dry forever?”

That’s what it looks like. My long-term, deeply percolating hope—no, not just hope, BELIEF—that I would, after my months of conscientious ear care, get back my freedom to splash—dashed. I couldn’t fix my ears; how could I continue hoping to fix anything else?

“But you don’t like snorkeling,” Ian said to me, not unreasonably, that evening on the couch after I’d sobbed out my day. “You have said multiple times you wouldn’t want to paddleboard on Lake Union with all the boat traffic.”

“SO WHAT!” I shouted. Misery knows no logic.

I had still not decided whether or not I wanted to hear the results of my blood tests in the clinic the next day. I’d toyed with asking for them to be sealed in an envelope, like the sex of an unborn infant, for me to open in the privacy of my own home, when (and IF) I wanted to. I’d had a first appointment with a psychotherapist earlier in the week, and she had suggested, as a way to begin calming/disengaging my emotional reactions to everything medical, that I imagine holding my brain cradled in my hands. Instantly, I saw my hands out in front of me, my brain, mildly pink and softly glistening in a diffuse glow, resting in my palms. I cried, overwhelmed by the rightness of this suggestion. Later on, as I sat with my brain in my hands and watched it glow, I began to see it at work—synapses firing with a shot of electric pink or indigo light. Calming though it is to spend time sitting still with spirit and intuition and imagination, one must come back to the real world.

Wednesday night, after Ian and Spackle said good night and went to bed, I spread out my oracles around me on the guest room bed (my journal, my two sets of colored pens, my Inner Child Tarot, my I Ching, my quarters, my medicine animal cards). I have found this summer that I like to spread my things out on a thick mattress. The loft in the Dacha, with its wall to lean against and its porthole for fresh breezes and light to read by, is a perfect place to encourage introspection.

I began my self-studies a little after 11:00pm. All oracles pointed to ego, and ego-based wishes. A sure way to be disappointed, this information said, was to yearn for something that you weren’t going to get. What I was yearning for, desperate for—what I have been yearning and desperate for for years—was proof, physical, Western medical PROOF, that I was done with cancer. I wanted it for me, but I also wanted it so that I could Show Them that I could do it on my own. I have kept hoping, as I’ve had each new epiphany about myself and my spirit and how everything works, that THIS EPIPHANY will be the one to free me. Live life in spite of cancer? You got it! Live life using my experiences with cancer as a way to inform others? You bet! Stop treatments and live wholly in the moment? Will do!

Did any of these epiphanies stop the cancer? No. I was sitting right there on the bed in the guest room, wishing my hardest that my tumor markers would turn out to be somewhere in the 20s, as I have done for as long as I’ve known about tumor markers.

You know that wise saying about repeating things that don’t work? And how, if you do that—repeat things, over and over and over, that don’t work—it means you’re crazy? The tear-rusted gears in my brain, bound up from years of devastating disappointment, slowly began cranking.

I am not going to have a tumor marker score in the twenties tomorrow, I thought to myself, my heart aching.  I am not going to have a tumor marker score in the twenties. OF COURSE I am not, I thought. I am not going to have a tumor marker score in the twenties.

So. What now?

As I let that truth sink in and infuse my tired body and my tired soul, a faint mist of light entered into my consciousness. The slightest sliver of a new dawn. I may be on some form of chemotherapy for the next 40 years, yes. But, if I am truly living with my body and spirit integrated, my body will be able to handle that. And now that I know, I KNOW, that my tumor markers will be above the twenties, I can start to think about what I want to do about that—how I want to personalize and customize my cancer treatments—instead of endlessly hoping I won’t have to deal with it anymore.

I spent Thursday without anxiety, getting a new car radio installed and doing a little shopping. When, a little after 4:00pm, I was asked if I wanted to know my blood test scores, I said, calmly, yes. My tumor marker was a little over 100, which strikes me, mostly, as remarkably low considering that the last full infusion I had was in early February, six months ago. I have been doing nothing since but living my life. Sure, my markers have gone up, but not so fast that I don’t have time and space for negotiation.

“Here’s what I want,” I said to Dr Susan, who is learning the ropes and helping Dr Specht. “I want to have some scans done in six weeks, when it’s time to get my port flushed. And then I want to discuss customization of my treatment schedule. I’m not like everyone else,” I said, “and I would like to have as little chemo as necessary. Ian and I have started our plans to build on Orcas; perhaps my schedule can be every four weeks instead of every three, and Ian (who would need to be here for work) and I could spend our monthly long-weekend-in-Seattle together. And maybe I’ll have a summer break each year—three months off.”

Dr Susan left; she and Dr Specht came back; scans were discussed; a treatment plan was mentioned with assurances that we would discuss after the scans; and we were done. I’ll be back the first week of October, and we’ll see what happens next.

This latest epiphany—that my only choice for being done with cancer in this lifetime is to integrate it fully into my life (another paradox)—did not bring me the rush of joyful adrenaline that other epiphanies have brought. But it did bring a deep down, low-hum, fundamental relief.