Since my second or third visit, I have developed the habit of taking fresh flowers to my oncologist when I have a consult with her. She’s always very appreciative, in part since that means they have a bright cheery spot in their break room for as long as they last. My doc also impresses me by how many flowers she can identify, often when I myself do not recall what they are. Most of the year, I can harvest flowers from my own garden, but it’s far too early in the season for that here. Today, I took purple freesia from Trader Joe’s.
That’s just one of the rituals in which I engage when I have to go into the “belly of the beast” of cancer treatment. It strikes me as akin to the habits of ballplayers who always wear the same lucky socks (or whatever) when they’re in a special game. It’s highly unlikely that practicing these rituals has any bearing on the outcome of the event we seek to influence. And yet, if they bring some confidence and calm along with their practice, then perhaps they do indeed have some effect, however small.
By the time you all read this post, I will have updated it to include the results of my latest CT scan, which I had at 9:30 this morning. In part to cope with my anxiety about the whole process, I now schedule my scan the same day as my consult, since it does not take that long for radiology to generate a preliminary interpretation of the results. A few scans ago, I had to wait several days between the scan and the consult, and that wait is a torture for me that I’d prefer to avoid.
On Sunday night, however, when I am composing this diary, I have no real idea of what the scan will say. Recently one of the NYTimes bloggers on cancer, the feminist literary critic Susan Gubar, wrote a brief essay about this very issue of not-knowing. I feel fine; I have no discernible symptoms related to a recurrence of cancer; I’ve been diligent about taking my hormone medication (more so, I must admit, than I have been about some of my other remedies). So why shouldn’t I believe that my internal cancer-o-meter is working just fine?
No real reason, actually, other than a lifetime’s habit of worrying. As if worrying has any influence at all on the future! Or, in this case, the future determination of what is already happening in my body. And then there’s the idea that expecting bad news, or at least trying to brace myself for the possibility of it, might make it marginally easier to hear such news in the event. But that too is a kind of self-delusion, because I don’t think that hearing bad or disappointing news is something one can adequately prepare for in advance.
I am continually perplexed, aggravated even, by the opacity of my own body. I know, it’s also arrogant to think that there are other aspects of myself that are “knowable” in a more complete way. But for the moment, I’ll stick with complaining about this particular aspect of my existence which seems always to escape my full—hell, even my partial—understanding.
It’s not as though I want, or expect, to know how things work to the last system, organ, or cell. It’s merely that I’d like to be able to believe that if I “feel” well, that there isn’t anything sinister going on. I suppose that such an attitude is akin to that annoying sentiment that people often express toward those who are dealing with cancer: “You look great!” Yes, it’s fine that I look great. It’s also very good that I feel great; believe me, I am not complaining about that. But it’s best of all to know, as definitively as I can, that I actually AM great in terms of my physical health. And that is something that I simply cannot do on my own. (Hmm. Maybe that’s at the center of my discomfort, at least in part: that I must depend on the expertise of others to have any insight about my own condition. Worth pondering.)
I must also observe that these tests have their own real limitations. The resolution of a CT scan isn’t down to the last fraction of a millimeter, and furthermore they carry their own risks from radiation. Some people I know from other online forums simply refuse to have them done for that reason alone. Others are not in a position to be able to have them done; without some kind of decent medical insurance, they are prohibitively expensive. Mine runs in the neighborhood of $6000 each, which would be out of the question had I no insurance.
Let me be upfront about my position on epistemology—which I think I can do without resorting to Rumsfeld’s infamous list of what we know and what we don’t. (Which is something he cribbed from someone else, though from whom I do not recall.) I am not a logical positivist. I do not think that everything that is knowable is also observable and quantifiable. Since I am neither experienced nor proficient as a philosopher, I cannot repeat for you the arguments that have been made pro and con, but I strongly believe there’s more to our existence than what our senses, or the instruments that our senses and intellect have allowed us to create, can apprehend.
I still have William James’ masterwork, Varieties of Religious Experience, on my to-read list. But for now, the belief I hold about epistemology lies somewhere in between his principle of Pragmatism—that is, what matters in terms of belief is what works for the person who holds it—and one of the aphorisms of Vine Deloria, Jr.: “There is nothing more powerful than an idea.” (Probably a paraphrase, though given some time I could come up with his original statement.)
Do these rather inchoate and undeveloped attitudes toward what is knowable influence my behavior now, when I am facing a major physical crisis? Of course; how could they not. To an empiricist, that kind of attitude undoubtedly elicits a great deal of eye-rolling and head-shaking. Right now, however, depending merely on what is quantifiable—whether that is a determination of health, of a disease state, or something ambiguous—is truly not what works for me.
My coping mechanisms, in other words, include a number of activities and objects that don’t have any measurable proof of success.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
This is a shorter list than it would be if I included some of the physical self-care practices that I’ve described in other diaries, whether there’s any documentation of their benefit to people with cancer or not.
I have several talismans, most of them jewelry of some kind. The two most important at present actually come from the Daily Kos community, particularly from the kindness and artistry of Sara R, winglion, Aji and Wings. I’ll take my Community Quilt with me into the CT scanner for sure. (As always, it is a conversation piece for the techs. I must make a habit of carrying Sara and Ann’s business cards with me.) I’m planning to hold my WhiteHawk necklace in my hand during the procedure, since it’s metal and therefore something I can’t wear around my neck. I have to raise my hands over my head during the scans, and so anything on my hands and arms are out of the range of the machine. Both of these objects carry the good wishes, support, and love of literally dozens of people, and I am daily grateful for the tangible reminders they provide. (See, there are some physical objects that do have an impact on my personal worldview—though I would argue their significance to me is far greater than the physical elements which comprise them.)
I understand that I am also still on many prayer lists, near and far. I realize that this too is a contentious topic, with most rational people pooh-poohing the idea of its efficacy. I have no clue myself. I do know that I find it comforting.
I have to say that the kind of self-prayer at which I am still a novice, meditation, is also a source of calm, comfort, and reassurance—not only during challenging moments like these, but more generally. My mantra alternates between the four basic principles of a lovingkindness meditation and the simple but wonderful prayer of Julian of Norwich: “All shall be well, all shall be well, and all manner of things shall be well.”
Sunday afternoon I went on a bluebird search in one of my favorite natural areas. My husband came along, and I would have liked nothing better than for us to have spotted one. They’re not rare here, but not terribly common either. The natural area we visited has several bluebird houses, and in the past couple of weeks I have been blessed to see a few of them at different times. Yet despite the ostensible failure of our quest, just the experience of being outside in the lovely warm sunshine of a Michigan spring day was uplifting to my spirits. I feel deeply reassured when I feel connected to the natural world rather than separate or alienated from it.
I promise I have not edited this diary in any substantive way, other than to add the appropriate links, to fix a few awkward passages, and to convey my latest news, good or bad. I say this in the hope of encouraging you to share what you find meaning in doing that’s not necessarily reasonable or rational, but still take sustenance from as you struggle with what is knowable and what is not.
Postscript: Yes, I have received good news again from my scan and my CA-125 reading. In fact, while I was in the scanner I heard a voice, not mine, resonating inside my head: “Nothing to see here.” I’m not that gifted in terms of intuition, and I was startled by that message, though it was reassuring. FYI, I did report this to my husband BEFORE we heard the confirmation of no evidence of disease from the resident.
This is now my third clear scan in a row; I’ve officially been in remission for almost ten months. We are all greatly relieved and grateful. I’m celebrating in part by being here with you. More celebrations will take place over the next week or two. No more scans for me until October.