Ovarian cancer, the whispering cancer, is a brutal teacher of epistemology—the investigation of “what distinguishes justified belief from opinion”. My gyn-oncologist knows cancer. I know myself having cancer. The intermixing of those two types of knowledge is—for me at least—challenging, because both have justification, which at times can be no more than an opinion to the other.
For instance: I knew I was sick for a long time, but my body presented no practical evidence of that sickness. That wordless whisper gave me no way to determine whether my understanding of my condition was justified. No medical person ever suggested that that this knowledge of mine was not valid, but without evidence to pursue, that knowledge was useful only in causing the doctors to accept my many returns to their offices until we stumbled on the evidence of cancer.
That was justification, if not the sort anyone in the world would want.
Once there was a diagnosis, the center of knowledge shifted from that wordless whisper that only I could hear, to a many-sided, medical and scientific conversation. This is cancer; this is the path we are taking to deal with it; this is where this cancer and I are today. Medical knowledge exists independently of my knowledge of my condition. My sense of myself has been good; it has been despairing; it is once again very good. I was right that I was ill, and deathly ill at that, but that rightness is no guarantee for the next whisper I hear. If I am awake at night, my self-knowledge is as firm as jelly, as fluid as water, as dependable as the weather.
The virtue of rational, experimentally based, and verifiable treatments is the reliable, there-in-the-dark-of-the-night, knowledge. Tests tell me that some cancer is still there, but only this much. There is vastly less than before surgery and chemo, and it has not grown since, and it is due to the surgery and chemo. I admire those who can relinquish the security of modern medicine for alternative treatments, but I cannot be one of them. I need that knowledge, such as it is.
Nevertheless, though my understanding of myself is subjective, and highly variable, it is not therefore inaccurate. It may be fuzzy and it may change by the minute, like a thermometer; like a thermometer, it is not wrong because it changes. There is a wholeness to the body accessible to only the mind and intuition of the individual. It is knowledge, imperfect and changeable, yet it must be respected. I could not go on without that knowledge, such as it is.
And yet, medical knowledge, I have learned the hard way, is much more subtly opinionated than it seems, until you have extended experience with it. This is what I learned about reading a CT scan: there are lights and shadows, spots and clouds and rolling planes, dark lines and luminescent ones. For the trained eye, though, the scan is like a map, a good, detailed map. Maps are meaningless unless there is someone to look, to choose the information desired, and to follow it to its destination. The radiologist is the first reader. The radiologist reports the evidence, and flags the path. A different radiologist has read each of my several CT scans (a conclusion I reached based on the differing vocabulary and pattern of recording in the written reports).
I have learned that, for instance, the disappearance of a cancerous lymph node can be a non-event, not worth flagging. I would disagree, but the radiologist is reading the map for the oncologist, not for me. A different radiologist reported a previously unreported node on a gland and flagged it as “a possible metastasis”. Metastasis is a terrifying word. As it happened, the node on the gland that occasioned this was not new, as my gyn-oncologist verified. He said it was not evidence of metastasis. He pointed out that my CA125 (the cancer antigen that signals cancer activity) was steady for the previous three months between 8 and 11. Normal—meaning what one would find in the general healthy population—is 0<34.
The CT machine is a kind of camera—for itself, it knows nothing of cancer. The radiologist knows the CT scan, and cancer, but not the results of other tests. The CA125 score is itself only a very general measure. My gyn-oncologist puts it all together, with a healthy dose of a long view arising from experience. I must add to this mixture a good dose of my knowledge of myself. Everything must be measured together, weighed, and read as a whole. Then it must be reread and re-weighed the next day, the next week. The possession of hard, verifiable, knowledge is overwhelmingly important, but there is never enough, it is never definitive even of what is, much less of what will be. Getting the reading right is powerful; getting it wrong is as well.
I can have opinions all day and into the night. Knowledge is what I need, and it is hard to find and hold on to. I take peregrine kate’s point that this is not a disease so much as it is a condition. This is right. Wanting to know where I am with this condition is normal. Wanting not to have to think or talk about it is also normal. But I still listen for that whisper.
Who—or what—do you listen to, how do you listen, in those moments when you need to know your condition?
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 7:30-8:30 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.