a new "new" doctor, this one with imaginary vodka!

yesterday, we met with a new doctor. one of the forms we were asked to fill out was a doctor referral form, where you request the record of your visit to be sent to your referring doctor or any other doctor that is involved in your case. j had a referring doctor, the neuro-surgical oncologist and three others. i had to completely re-map the form to fit them all in with arrows and stars and a lot of half-remembered names and addresses. there were doctors we have seen once and even doctors that we have appointments with but haven't seen yet. there was the radiation oncologist, the medical oncologist who specializes in head and neck cancers, the surgical oncologist who specializes in head and neck. every doctor on that list represents just another small piece of the confusing, complex puzzle that is j's cancer treatment.

and yet, even with all the doctors involved, it's hard to get a handle on just what is going on. i know that must seem strange, but even with all the years of training and experience that that list of doctors represents, the doctors themselves seem not wholly sure what to tell us about what is going on. there is a lot of theoretical talk about "what hopefully will happen..." or "what potentially might happen...", but "it's hard to tell what exactly will happen..." and "we'll have to wait and see what the scan tells us four to six weeks from now, depending on when we can get you in for an appointment."

"wait and see" are the most complex words in the english language. most complex, most freighted, most scary, most exasperating, most annoying, most tiresome, most vague...

the new doctor is a nuero-oncologist. they tell us he's going to be the person following j's case from here on in. he also told us he would be following j's case from here on in. it was nice to hear someone was going to allow themselves to be held responsible for overseeing j's ongoing care. (i wrote this earlier and as i re-read that last sentance it strikes me as rather bitter. am i bitter? i guess some bitterness is unavoidable given the cosmic injustice of the situation. i think i am bitter with the doctors more than i am even bitter with the cancer. i am constantly on the look-out for inconsistancies, errors, double talk, small slights. i think it is all what a trained professional would call "transferrance." but i am only guessing, since i am not a trained professional.) yes, it is nice to finally meet the person who is going to co-ordinate, as much as any of the doctors do co-ordinate, all of the other doctors involved in j's care.

he was very nice. he has very long eye lashes, not much facial hair and is quite portly for so young a man. he has the last name of an old russian man who likes smoked fish and a little nice vodka.

he and his fellow (a very confusing relationship i think, the doctor-fellow-patient relationship. i am never sure: is the fellow a real doctor? is he a resident? is he a student? i can never figure this out.) were very straight-forward and informative. we talked about what would possibly come next. we talked about what we could maybe, possibly expect from the radiation. we talked a little bit about the reality of our reality. the doctor said, "now they are trying to make cancer into a condition, like heart disease or high blood pressure, that is treated to get under control and then managed." i couldn't figure out what he thought about that view. it certainly seemed like what he was talking about in j's case was management. what we are hoping for with j is no change basically. we want to get the tumors under control and then try and manage the mischief that the (hopefully) non-active tumor masses cause in the tight space of j's brain.

i understand what they are talking about, but sometimes it feels like such a maze: all the hopes and expectations and projected outcomes and unexpected growths. are we going to be going back and forth from sloan kettering forever? it can seem so endless. and for us especially. we had thought after the first treatment and the clean scans that we were all done with cancer: a quick detour from life, not to be repeated.

but here we are again, meeting with all new doctors; telling the history of j's health over and over again. i have to bite my tongue from just anwering for him when they ask him all the same standard questions i personally have heard the answers to a few thousand times. i am not always so good at biting my tongue. j is very nice about it; he even pretends he's grateful! but it's like an itch that is really craving a scratch, talking about your loved one's cancer. they get to do it all the time with the doctors, but no one ever asks you, the loyal caregiver! and you have such insight and interesting detail! you have such a good story to tell, full of puking from chemo at the bus shelter in front of starbucks and blood phlegm all over the bathroom walls. sure it's j's body that the cancer is in, but i also have my history of cancer and dammit, sometimes i want to scratch that itch!

i am taking a wait-and-see approach to the new doctor, but i'm leaning towards hopeful.