what's in a name

here's a story i've been meaning to tell for a while: the story of the name "i'm the wife." (or "ohimthewife" which is pretty much the same thing.)

it all started way back on april 20th, in the st. vincent's emergency room, with j lying dazed on a gurney and me sitting in the dirtiest, most uncomfortable but only available extra chair in the er.

we had been through a lot already that day. we wanted a moment alone together; a moment of peace; a moment of not having to look up the gown to the wrinked crotch of the elderly gentleman in the gurney opposite j's. we had just pulled the curtain closed and were admiring the mysterious brown stains along one side when it was violently ripped open by a woman with "funky" glasses and a lab coat: the mythic "dr. s."

we had been hearing about dr. s from the nurses for the past two hours. apparently she was the one calling the shots in that godforsaken place.

she said, "mr. m?"

"yes," j replied.

"and you are?" it took me a minute to realize she was talking to me. and then took another minute to realize that she wasn't asking me a philosophical question: who am i? WHO am i? who AM i? who am I?

"the wife," i said.

not that it mattered. she had moved on. she was now making some major medical decisions without knowing any of j's history; she was busy.

yes, that's me: the wife. the one who sits in the crappy chair; the one in the way; the one who asks annoying questions; the one to ignore at will; the one who should be doing "this" or "that" for her poor, poor husband.

so while j may be j or mr. m, i will always be first and foremost "the wife" whose name will be said and forgotten as many times as a needle is stuck into j's arms, which is to say many, many times.

a bit of history 2: the first in a long line of doctors

a lump is determined to be malignant and so we are sent to an oncologist, a cancer doctor.

if you are j, at this point you will mostly likely want to stop reading, because you are not going to like what you read. it will cause a family squabble about the need to leave the past behind.

for those of you who are not j, the reason that a family squabble would have been in the offing over what you are about to read is because i did not like, do not like nor will ever like the first oncologist we met with, the ear, nose and throat surgical oncologist. while he may be a fine doctor devoting his life to a noble cause, he is also a pompous ass and if i never have to see him again in my life, i will consider myself lucky.

ok, i now that i have gotten all of the ill will off my chest and you are aware of the strong prejudices i have against this doctor, i will proceed continue the history of j's cancer. on the matter of this doctor, whom i will call dr. f, consider yourself warned.

after the call from the ent doctor who discovered that the lump was malignant, j was advised to call over to beth israel hospital and make an appointment with a dr. f. the first appointment available was in three weeks, which he took, though it seemed like a long time to sit about and wonder what sort of havoc a cancercerous lump is causing. but at this point, we had no idea what we were about to get ourselves into; we had no idea how to operate; how to act, how to deal. it turns out that three weeks was way too long to wait, because when the ent doctor called to check that j had made an appointment, he then got on the phone and we were suddenly able to get in to see dr. f within a few days.

there are a couple of questions i have always wanted to ask one of our doctors, but always forget to and one of the big ones is: do you supply your own white lab coat or does the institution for whom you work; and further, who is responsible for washing them? i can't tell you how many "white" lab coats i have seen on doctors or nurses in supposedly reputable hospitals that are straight up filthy. i understand that the pockets get dirty from putting your hand in and out and pens leak and make marks when not capped, but please, we all do laundry: when things get dirty you wash them. i mean, if you went into a restaurant and the waiter was wearing an apron that was covered in specks of dried food, you would be a little repulsed, would you not? it seems to me that it is a lot more important for the person sticking their hands into body cavities and making important treatment decisions to be the model of cleanliness than the person who carries the eggs benedict from the kitchen to your table. but i would leave a restaurant where the staff looked dirty, wouldn't you?

at this point, i bet you can make some pretty accurate guesses about what i noticed about the good dr. f first. a couple of other fairly disturbing details became evident soon after he swooped into the exam room in which we had been deposited. they included a head lamp of the sort used by cave explorers attached to his unkempt head and a pair of dark brown tassel loafers, narrow width. he had the distracted air of someone trying to make no impression whatsoever and an inability to look one in the eye. now, i am a fan of the eccentric genius, but i think it is a completely inappropriate persona to assume when you are in a field when you are dealing with people whose emotions may be heightened by the threat of serious illness; because eccentric geniuses are not generally known for their warmth. and when delivering the diagnosis of cancer, a little warmth is called for.

i have been told by another medical professional who i speak to that many times, a doctor will not be completely forthcoming about the extent or seriousness of a person's condition because they don't want to scare them or they assume that the person doesn't really want to know. i don't know if these doctors assume that because a person hasn't been to medical school that a person isn't able to understand medical concepts or terminology, but i am here to say that that assumption is wrong. and what makes me so mad about that idiotic assumption is that a doctor is a stewart, not a god. as a patient, you have allowed the doctor access to you; because you are patient, a doctor should not be allowed to take your body away from you and by not being completely straightforward about what is going on in your body, a doctor is playing god, making decisions about you as if you are a mere appendage to the cancer.

is it because people are easier to deal with when they are just a body? is it because if, as a doctor, you open yourself up to questions, to scrutiny, it may soon become apparent that all you are really doing is guessing. we want doctors to have all the answers, to cure us and to make it all go away, but from what i have seen throughout j's bout with cancer is that the doctors are making at best, educated guesses about how to treat each person's cancer. but rather than be honest about that and allow a patient to come to terms with the great uncertainty of cancer from the start, the doctors try to give this sense of false security by turning patients into children: they have the knowledge and us it to lead patients around by the nose.

but i digress... so we meet dr. f and his terrible footwear and he sticks a tube down j's nose and pokes him and has a pathologist come in and painfully aspirate him a few times and announces that j has a parotid gland tumor which had also infected some of the local lymph nodes, type of cancer unknown until he had gone in and surgically removed the tumor, which was tricky because he couldn't be sure it hadn't wrapped itself around the facial nerve which may have to sacrificed which would cause facial paralysis which may or may not evetually go away but the surgery will only take about three hours and would you like to schedule it for three weeks from this coming thursday?

huh?

when we said that we thought we would like a second opinion he suggested another doctor, i think his boss, at the cancer center and added that we should also see this other guy, who didn't take insurance (note: a doctor knowing anything about insurance coverage is a BAD thing. it means it has been an issue before.), but since they might have to HARVEST a nerve from j's ear and this would be the guy consulting, if we wanted we could see him.

sounds pretty straightforward right? WRONG! first of all, i would never again go and get a second opinion from a doctor in the same group. they all meet together about cases which means that they all look at them the same way. a second opinion should be a fresh set of eyes and ears, not an echo. and you either need a patient to see a consulting doctor or you don't. and you certainly don't involve money. if we really needed to see this doctor, the money is a non-issue. (the money issue came up with one other doctor and i didn't like him either!)

anyhow, we went and saw this consulting doctor and it was a true waste of time and $300. he didn't tell us anything that we didn't already know and he was was pretty surly to boot. in the end, though dr. f did HARVEST a nerve, it wasn't necessary and caused problems rather than fixing them.

so the surgery was scheduled for a couple of weeks (or maybe a week, i can't remember) from around then and we proceeded to jump through the various hoops that needed jumping to get j surgery-ready: pre-testing etc...

at this point, we were still in the dark about just how big a deal this was or might possiibly be. our past experience with doctors and illness had been something is wrong or broken and a doctor fixes it and off you go! j had been pretty healthy most of his life, with the exception of a mysterious allergic reaction to something when he was about 12 which his doctors had never been able to explain, something which involved hives, and ACL (whatever that is) replacements on both knees. i had had a c-section three months before, but i didn't really think it was all that big a deal, even though "they" say that stomach surgery is the most painfully surgery to have and a c-section is major stomach surgery. i like to think that i have a high pain tolerance: i didn't even use up all of my morphine-on-demand and i still have all of the pain pills they sent me home with, because well, you never know when you'll want to relax after a hard day with a margarita and a percoset, which seems to me a much more fun use of prescription drugs than the alleviation of pain.

up next: neck dissection and lympodectimies. whee!

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.

back on the table: radiation part 2

j and i often joke about how it takes us at least two tries to get things right. in our life together, our "firsts" have usually been a disaster: our first christmas, our first birthdays, our first anniversary etc... our first christmas together is a doozey of an example. what i love most about christmas is presents. i love giving presents; i take an inordinate amount of pride in picking out the most perfectly perfect gifts. and even though i don't mean to, i expect the same: i want my gifts to be just-what-i-wanted-without-knowing-i-wanted-it. basically, i want you to read my mind. i don't want to have to do anything so low as drop hints or make blatant requests!!! read my mind! if you love me, you will read my mind and find the perfect gift!

(you start to see, perhaps, the roots of the disaster of our first christmas.)

nothing that j did get me or could have gotten me for christmas that year would have been right; i know that now. for whatever reason, my emotional expectations about our first chrismas together had spiralled completely out of control. and so, you will not surprised to hear, that christmas morning 2004 was a train wreck. i had spent weeks of my time and much of my money buying j the perfect gifts: an engraved iPod, a book he had mentioned six months ago that he would like, fleece-lined pants to wear after snowboarding. my whole self, body and soul, were wrapped up in those gifts.

i won't bore you with the actual events of that fateful morning, but suffice it to say, there were tears and threats of leaving and what was supposed to be a cozy hallmark moment was more like a scene from dante.

unreal expectations: they'll get you every time.

sometimes, as we go through this second round of treatment, this second round that is starting to eerily resemble the first, i think about the surreal idea that perhaps we are being asked to do this all over again because we didn't get it right the first time. (and if that's true, who is deciding we needed a do-over? a question for another time perhaps.) the first time, in some ways, was as disasterous as that first christmas for a lot of the same reasons: unreal expectations, on both sides. i wanted j to be one way throughout treatment and he wanted me to be another way. we both failed each other. we both blamed each other. we both resented each other. even as we found out about the new tumor in his brain, we were still dealing with the emotionally aftermath of the first tumor.

this second time around, i am happy to report, things are different. i won't say they are necessarily easier, but they are better. maybe it's because we know a little bit better what to expect; maybe it's because we are constantly working on getting through this as a couple and with a, as a family. all i really know for sure is that even though this is terrible and it sucks and it's hard and all of those overwhelming things that come with dealing with cancer, it's not a disaster.

which all leads me, the very long way around, to the first day of j's radiation treatments. he said going in that it was like deja vu all over again: the feel of the hard table, the blue light of the treatment machine, the smell of the beam. and the mixed emotions about all of it: happy to get started and get these tumors out of his head, sad to be back in the same place he was almost exactly a year ago. it was good to get treatment underway, but it was a hard day to live through.

and for me, it felt just surreal to be back in another waiting room, waiting for j to be treated. it's really the worst feeling, having him be taken by a technician through yet another set of heavy, dull-colored doors; waiting and trying to imagine, and at the same time not imagine, what they are doing to him. at one point, a technician (or a nurse? i couldn't tell which) came out into the waiting area to tell me that j was going to be longer than anticipated because if he was going to start treatment that day, his doctor would need to ok the radiation films they took. while i was grateful to be kept abreast of what was going on, my heart started pounding like a hunk of lead in my chest and i could feel my eyes widen the way they do when i am trying to listen very hard to something i imagine is very important. it scared me the way the technician sat down and at first, i couldn't understand what she was telling me. my first thought was that something was wrong: they had found something else and now he couldn't be treated; something had happened to him while he was on the table, getting films.

but it wasn't any of those things. while the doctor had told us j could have his first treatment on the day he did his films, the technician thought he was only going to have films done. she had told me he would be just 20-30 minutes, thinking that he would only have films done, but because he was going to have actual treatment, it was going to take longer. j had asked them to come and tell me, so that i didn't worry when he wasn't out when they said he would be.

so in the end, j got his first treatment. and the best thing i can say about the whole day is that we got through it; it was terrible, but not a disaster. and the pearl of wisdom i can take away is don't drink a whole lot of caffeine before going into the radiation waiting room.

the word: "caregiver"

j told me yesterday that he doesn't like the word "caregiver."

truth be told, i don't like it much either. it makes me sound like some old hag hauling water and changing the bed pans. it makes me sound a whole lot nicer than i actually am. it's just one of those things with cancer that really made my skin crawl the first time i heard it and now is part of my every day vocabulary.

j does need "care" to be given, but not in the way the word "caregiver" implies.

i think someone should invent a new, less icky name, like "temporary super human, who, while temporarily 'super', is also still completely fallible and should not be held to the standards of perfection implied in the word 'super'". yes, very catchy.

more thoughts on getting through the day and some recommended reading

thinking more about the last post, the one about how we get through the day, i remembered this passage from this book i read a while ago called "Elegy for Iris," written by her John Bayley. the "Iris" of the title is Dame Iris Murdoch, the english philospher and writer, who suffered from alzheimer's disease. John Bayley was her husband (she died in 1999 from complications of the disease) and the book is both a celebration of their love and their life together as well as an almost painfully touching memoir of being a caregiver to a loved one.

John Bayley was an amazing caregiver. even at her most addled and most difficult, when Iris is so lost and so far from "herself," he is still so enamored of her; continually falling in love with her. at the same time, he is honest about the trials that he goes through: losing patience, feeling trapped, getting lost in the hopelessness that alzheimer's produces in whomever it touches. he says at one point, "Does the care-giver involuntarily mimic the Alzheimer's condition? I'm sure I do." (241) as a caregiver, you really do take on the disease mentally as the disease takes your loved one physically.

the passage that i thought of was a bit he wrote about getting through difficult moments in his days with Iris. He writes:

"Something urgent, practical, giving the illusion of sense and routine. The Reverend Sidney Smith, a benevolent clergyman of Jane Austen's time, used to urge parishioners in the grip of depression who appealed to him for help to 'take short views of human life - never further than dinner or tea.' " (52-53)

short views. minute-to-minute. much love. more patience. a lot of blind faith.

i highly recommend Bayley's book and i highly recommend Iris Murdoch's books. i also high recommend Jane Austen's books. I highly recommend any book which enables a temporary escape.