sometimes, it's worse than you think

more than once, j and i have been completely shocked by something in an appointment with a new oncologist. the first time was with the radiation oncologist at beth israel. we had been told that j would have "a bit" of radiation as a follow-up to his neck dissection and lymphectomy. what we weren't told until we met with the radiation oncologist for the first time, was that he would have to have radiation AND chemotherapy and that it was probable that he would have so much trouble swallowing, that it would be so painful to swallow that he might need a feeding tube. fuck.

you know where they surgically insert a feeding tube? no? neither did i until that day. and i wish i didn't know. (it's inserted through the stomach, but the procedure is done out-patient, if that's any consolation.)

it seems like every appointment, no matter how much you try to prepare yourself for the worst possible news, no matter how you try and brace yourself, it's never what you expect; it's always worse than you think it is going to be. today was the worst of the worse-than-you-think-it's-going-to-be: j's latest mri shows that he now has multiple lesions in multiple locations on his brain and is going to need full brain radiation.

the thing that makes the shock of that news even more shocking is that we had been told this weekend by his neurosurgeon that looking at the mri they did this weekend, that he did have some growth, but only near the site of his resection. she said that it was in too high-risk an area to operate on and so the best option would be to have stereotactic radiosurgery to the one area. sr is a high intensity beam, administered once, just to the site of the tumor. it's not fun, but it's effective and it's over in one day.

today, the radiation oncologist, looking at the same mri, said that there were multiple sites, in multiple areas of the brain. and since j's cancer seems to be some kind of super aggressive variety, it would be safe to make the assumption that, it is likely that, it is probable that, there are more cancer cells, in clusters thus far too small to be picked up on a scan, waiting to grow into big monster lesions. therefore, it makes sense, in j's case, to radiate the whole brain, killing both the visible lesions and the microscopic lesions-to-be.

fuck. fuck. fuck.

i think for a minute, after the doctor, a very, very nice man by the way, said that j's scan showed multiple lesions that i might have left my body and floated up to the ceiling and become a ghost just watching what was happening. i think i might still be in shock. i am a little afraid of what is going to happen when the shock, if i am in shock, wears off. j's dad once told me he didn't think that j and i had fully accepted what was happening to us with all of this cancer stuff; that we hadn't let it "hit" us yet. and while that may be true, at the same time, here we are, living it every day, going to the appointments, showing up, talking about it. we have been asked to face mortality and i think we are doing it. or rather, j has been slapped in the face with his own mortality, at a time when a new phase of his life is just beginning. how do you start to make sense of the inevitablity of death when you have just gotten married, had your first child? it's like a whole lifetime's worth of experiences crammed into a few short years: birth, school, work, love...

at this point, i have a hard time gauging how hopeful to be, how pessimistic. it is too depressing to be completely pessimistic, even if you are constantly getting really upsetting news. and the radiation oncologist did seem pretty positive about the outcome of the full brain radiation for j. there is 75-80% success rate in no new tumor growth. and if there are new tumors, they can be "spot treated" with the stereotactic radiosurgery (say that twenty time fast!) which we had though was not possible.

cause that's one of the things about radiation: you can only have it on an area once. except with this brain radiation.

mostly, we are just hanging in there and giving a lots of kisses to a and each other.