I do not harbor wishes to survive
To be upon this earth only alive.
I wish to thrive.
To revel in the pinnacle of incandescent heights,
The vertiginous flights above the shadowy abyss.
Sometimes touching down in a deep, dark place,
Which elevates, enhances,
Illuminates the bliss.
What I wish is this.
Those waiting with bated breath along with me will be relieved to know that my spinal cord is perfectly normal. Dr Jason has actually suggested doing a PET of the brain, as well as another full-body PET, sooner than Dr Specht had initially suggested for the next PET. That is, doing the PET in the next week or so, before we go to Japan, as opposed to the end of March or April.
As I've mentioned, a PET of the brain is not used very often, because a PET is measuring the metabolism of radioactive glucose and the brain sucks in glucose at a much higher rate than the rest of the normal body tissues, and so it's harder to see what's going on. In the case of a brain PET, they actually do two scans—one immediately, and one 4 hours later, when presumably the normal brain tissue will be less "still-radioactive" than any active lesions. And, since I have a recent MRI, they'll be able to cross-reference in their search for new activity.
The main reason for this test now is to see if there is, after all, any other brain activity that we haven't yet noticed—are any of the old lesions starting up again?—because the next good step is gamma knife, and while he's getting one spot, it makes sense to get them all. The gamma knife procedure is well-tolerated—"It's a long day," says Dr Specht—but nevertheless, it involves me getting four screws screwed through my skin and into my skull to hold my head still. While that sounds fun, it's not something I care to experience more than I have to. Wide awake.
I'll keep you posted!
I've still got some things I want to write about and show pictures of over on The Dilettante Traveler, but three weeks of suspended reality does not actually make reality go away, and it's time to dive back into I Thought I Was Done With This.
Actually, one order of business may be to change the name of this blog. One thing I've learned, over the past almost-eleven years, and more directly over the past couple, is that I will never be done with this. Cancer is not localized, nor is it finite. It is a systemic issue and, much as I don't like the idea that it can't ever be cured and be called cured, it really can't, at least with the information and the tools that we have right now.
And so, we watch, and we monitor, and we wait with bated breath for the next blip on our radar. While we're waiting, we're going about our lives because, after all, life is moment to moment, and most of those moments, at least for me, aren't focused on cancer. Most of my moments, because I am incredibly fortunate, are focused on travel to unbelievably exotic landscapes, horseback riding and doggy love, crafting and creating, sharing life with an unusually competent and comfortable and sweet man who is, in his mother's words, "a true gem," or in my mother's words, "an ANGEL" (emphasis hers). Most of my moments inspire me to gratitude, and I'm even learning to have gratitude for the ones that don't initially inspire it.
That said, our watching has caught something, a tiny new something, deep in the center of my brain. Something that in and of itself is not at a dangerous stage right now—it's maybe the size of a pinhead. It really looks like it might just be an enlarged blood vessel, or something equally benign, but it's been growing slowly and steadily for the last six months, while everything else in the brain stays put as it has since after the radiation treatment in 2008. The thing about this spot that is most concerning is its exact location deep in the center of my brain, which is on the edge of the left ventricle. The ventricles are part of the ducting system for brain and spinal fluid—and therein lies all the potentiality of this little dot. If the little dot is not contained in a vessel but is, instead, in the ventricle itself, it can slough off cells that, with the help of gravity, can find their way down the spinal cord and take root in places where even the smallest pinhead-sized lesion can damage really important nerves, like the ones that tell me when to piddle and when to stop, or the ones that tell me how to move my legs to walk up or down crazy-steep tropical mountainsides.
To see if anything's happened yet, I have a spinal cord MRI scheduled for this coming Friday, and I'll meet with Dr Jason afterward to discuss the results. If it looks normal, the next step, from what I understand, will be to have a spinal tap, possibly three separate ones, to take fluid and distill it and look for cancer cells in the fluid. If the fluid also looks normal, then gamma knife is probably the best idea. If either of these tests looks concerning, there are options for chemotherapy.
In the meantime, I'm going horseback riding tomorrow, for the first time in three weeks. I hope I get to jump!
Ian and I were sitting in the car last night in the driveway, finishing a conversation about breast cancer. In my therapy session last Thursday, I had talked about not finding my identity in being a cancer patient. How I don't buy into the Culture of Breast Cancer, with its pink ribbons, its stuffed bears, its endless support groups and young survivors' groups and media attention. I know that all of these things make the experience more bearable for many, possibly most, women with breast cancer. But for me, I've never wanted to put that much of my self—my time, my soul, my spirit—into being a patient. I have said it before, and, I believe, represented it as well through my many interests—there is a lot more to me than this situation.
Also, as I wrote about last year, I really don't like the almost universally accepted metaphor that describes cancer as a battlefield. And cancer patients as fighters in a war, fighters who win to become survivors, or lose to become victims. In a war, one side or the other is going to lose. Wars are violent, heartbreaking, terrifying. Perhaps those things are inherent in having cancer . . . but perhaps they are not. Perhaps we have just learned to interpret our experiences that way, and perhaps we have the capacity to learn a different course.
My therapist asked me how I did define my experience, if not in the usual way, and I told her about the Life Tapestry. I don't know if this was my idea or my mother's, but I love this image:
My life—any life—is a tapestry of events, skills, feelings, emotions. In my tapestry, I have rich, beautiful scenes of travel, of study, of exercise and achievement, of love and friendship. And running through it, I have an acid green-yellow thread of cancer. In large amounts, this bile-color is not beautiful. But woven, as it is, through the rest of the tapestry, it is beautiful. It adds depth and mystery, and allows the designs and pictures to be more visible, clearer. Experiences are enhanced, highlighted, by this sour edge that keeps the tapestry from becoming cloying, too sweet—boring, even. It's the pinch of bitterness that makes the dish exquisitely gourmet, and not simply tasty.
Ian nodded in agreement—he has heard this image before—and then he said, "Well, there's a difference anyway between cancer and other diseases or medical problems—cancer is you. It isn't an infection by an alien source—it is YOUR BODY misbehaving. And so if you think about having to go to war, you're going to war with yourself—you're fighting yourself. And how effective or healthy can that really be?"
Holy shit. He is absolutely right.
Today I went to Olympus Spa to celebrate the birthday of a relatively new friend, who's only lived in Seattle for about two years now. I always wear my contact lenses when I'm at Olympus, because otherwise I couldn't really identify my own hands, let alone recognize the subtleties of my friends' facial features in the middle of a large, wet room full of women uniformly naked except for the matching pink and white striped bathing caps. One might think that it would be more appropriate to not be able to see well at a spa where everyone is naked, but with my contacts in I can see at a glance if I know someone or not. With them out, I'd look a lot more like I was staring at strangers. For my friends, if we're out of the pools, I'm actually a pretty good landmark now with only one boob. I have yet to see another woman there who's had a mastectomy and left it—I did, once, see someone who had had reconstructive surgery. It took me a moment or two and a couple glances to figure out why she looked weird—no nipples.
Anyway, I can't wear my contact lenses regularly at the moment, because of the troubles with my right eye and the drops and whatnot (I forewent my morning drop today), but I do put up with the slightly-greater-than-normal dry right eye and pull them out for occasional events, such as snorkeling last summer in Mexico, skiing (my goal is to go at least twice this year, and remember to take all my gear both times), and trips to the spa.
They were actually pretty comfortable today—much better than last summer in Mexico, when the drops I was using were different—so I kept them on for the return home and spent some time playing in the yard with the dogs and doing normal weekend tasks around the house. I finally decided to give my eyes a rest and take them out, and as soon as I had my glasses back on, I noticed a bunch of the teeny visual annoyances I've been attributing simply to the pocket of fluid still under my cornea or, more disturbingly, degeneration in my optic nerve or new activity in the lesions still in my brain.
I'd barely even noticed the distortion with my contacts on, let alone anything else.
What this says to me is that, even though my clarity of vision is pretty darn good in these same glasses that I've had for two or three years now, there might have been some slight changes to my astigmatism that my contacts, soft and sticky and visually comprehensive, ameliorate in a way that my glasses, hard and framed in my peripheral vision and, let's face it, frequently covered with dog licks that have attracted all manner of dust, simply can't make up for. And so my focus shift is slower looking from close to far and back; the world has a slight, slight, curve to it and an almost ignorable distance; I can't identify more than color or motion out of the corners of my eyes; and if the glasses begin to sit slightly teetered, my perception is thrown off without any really obvious cue to my awareness—that is, I don't necessarily know to fix them.
And so, my initial response when I noticed this, was to be relieved that all these little disturbances aren't actually symptoms of damaged optic nerves, but outgrown glasses. Unfortunately, there's not much that can (or rather, should) be done about this right now—my right eye is changing slowly, but quickly enough that measuring for new glasses doesn't make any sense. Sigh. But, it helps to have yet another bit of information that I'm doing okay. Very well, really.
For Christmas this year I received a blood pressure cuff. Add it to my oxymeter and the 200 syringes and 25 doses of Neupogen that I still have and I can go into practice! Anyone need a doctor?
