Friday, 31 January 2014
08:59:11 AM (GMT)
The process of going to the oncologists is like anything else. We develop rituals,
us humans. We have little patterns of behavior that help define and add meaning to
the things we do. Much like myself, I have a series of things that I do that elevates
my spirits and helps me with the anxiety that I face when contemplating my visits to
the cancer doctor. Now, this doctor is a great doctor. He's nice, considerate, and
does much to alleviate my symptoms, real or mental. But just walking through those
doors signifies the possibility that he will one day sit me down and tell me what I
have been dreading: "You have leukemia."
Now I'm afflicted by a particularly strange and rare disorder that stems from a
genetic aberration that I have either acquired environmentally, or might have
inherited from my father. This disease is rare enough that in a population of a
million people there only about ten or less individuals afflicted with it. In a world
of roughly seven billion individuals, only about 7,000 or less people potentially
have this disease. This makes me a medical oddity. And by virtue of this quality that
I now possess, doctors fumble over themselves trying to get face time. I am a
possible journal article that might get them published. Or they might earn a research
grant because of such a rare disease is presented to them that can avail them of the
opportunity to study cell-differentiation in bone-marrow.
But it also means that my disease lacks the sort of social-awareness and medical
support system that other more "popular" cancers might earn them. Not that one cancer
can be more merit-filled, but take breast-cancer for example; that type of cancer has
wide spread support from celebrities to social organizations that exist to help
sufferers. But a myeloprolifative neoplasm is unheard of, and most support groups (if
you can find any active ones) only have about 50 active members.
But this ties into my rituals. And those rituals often involve diligent research the
night before a doctor's visit to read up on the latest discoveries, studies,
treatment protocols that have been suggested. Fodder, so to speak, to keep my
awareness of my foe a crystal clear perspective. A picture of the thing that holds me
back the most.