I have a strange, late-night addiction to internet cancer surfing. I doubt it is particularly healthy. More likely it would be healthier to go to bed before 2 AM for once and get a bit more sleep. I got in the habit after I was diagnosed and was facing decisions regarding treatment options. I spent lots of time trying to decipher statistics, read between the lines of various studies about folate levels in rats with colon cancer. Sometimes I’d look for patterns in the way information emerged on the internet, hoping to read the order that pages popped up like the i-ching, and find is some message telling me what to do, how everything would turn out.
These days I don’t do it so often, but sometimes when I’m reading Rosie’s blog, I click through her links, and those links have links…it’s a vicious chain.
So the other day my doctor’s assistant called to say that the results for genetic test I had ordered had come in, and that it was “negative for the mutation.” I was pretty happy to hear that. Then I received the patient copy and realized that she had read the report wrong. There is a standard genetic mutation that is common in hereditary cases of colorectal cancer, and the test results did not reveal this deviation. Probably because I had not ordered that test --it’s really expensive, and my father had not show that particular deviation so it seemed unnecessary). Instead, the lab was looking for a different mutation that did appear in my dad’s DNA: two amino acids are flipped in one part of a certain gene that is needed for cancer recognition (MSH2). The official status of this mutation is “inconclusive.” i.e. there is not enough data to ascertain if this mutation causes a defect in the function of the gene. However, my father’s tumor lacked an MSH2 protein marker, which is a pretty good indicator that the gene was not functioning, and his DNA shows this particular mutation. My tumor ALSO lacked the protein marker, and my test result for the mutation was also positive. So they did find the mutation, the people at my doctor’s office just didn’t understand the purpose of the test to begin with, so they just read the “Significance: inconclusive” line and thought it was all good, when actually its more likely that my family is at the fore-front of a new correlate between mutation and function. My doctor is, I’m sure, not unskilled at what he does (general practitioner), but I am often surprised at how specialized people in the medical profession are. When I went to Sarasota for my father’s surgery I had to explain the whole genetic thing to the surgeon and basically give him the verbiage to order the proper test.
I don’t think about it too much, and it sounds a bit spoiled and whiney to say so…but I can sometimes feel a bit lonely in my cancer experience. With the genetic thing it’s not that I understand it so much, but that there doesn’t seem to be anyone around who understands it more, who can add to my knowledge in language that I can understand, so I feel pretty on my own there. Then there’s that camaraderie that seems to float over the breast cancer folks…and I’m the first to say I would never want to trade cancers, but I am outside that loop. Colon cancer doesn’t have any ribbons, which is probably just as well. If women have breasts, and pink is associated with women…then, people have intestines, and intestines are associated with…see we don’t really need to go there.
And even if I had the trendy cancer, there is the issue of the cancer relationship. A lot of blogs and friends, and people in general talk about the fight “against” cancer. Cancer is evil, it is the enemy that must be wiped out, it must be cured. Whereas I can’t give up on having a kind of touchy-feely relationship with my cancer. I think maybe if I can love it like Meg tried to love the big evil pulsating brain thing in A Wrinkle in Time…okay, that’s a lame joke but in truth I do cling to the belief that my cancer was a message. Of course I’m still not sure about what. About the world, about my life, my spirituality, about the terrain I think. Lots of holistic health advocates quote Louis Pasteur, who at the end of his life reportedly tried to contextualize his own germ theory, saying “The germ is nothing; the terrain is all.” I feel like our bodies have a terrain, and the world has a terrain, and the high incidence of cancer in the last fifty years has less to do with more cancer-seeds blowing in the wind, than with the already compromised terrain it lands on. There are others who believe things like this, and many of them sound a little crazy, even to me, which is also a bit lonely-fying.
Finally, there is the fact that everyone I hang around with is well. That’s great. I hope I can say that for years to come. Forever. But there was a time when most of the people around me were living with a life threatening disease, which allowed, for a while, a more direct experience of life and emotions, a completely altered sense of priorities, and once in a while, real moments of connection with other humans who were experiencing the same things. I don’t miss being sick, but I do miss those things sometimes.