how do we do it? how do we get through the day with the weight that we carry around?
the truth is: i have no idea.
when jeff was first diagnosed, one of the hardest things to deal with was the day-to-day nature of cancer and cancer treatment. one day is fine, the next is bad: the only certainty is the complete uncertainty.
by nature, i am a planner. i like to know where the day, the week, the month is going to take me. i like to know that j is going to happily leave the house in the morning, go to work, come home at 6. i like to know that on the weekend that he will happily want to go to the farmer's market, take a to the park, say something that will make me laugh.
sometimes, i live not just day-to-day, but hour-to-hour, minute-to-minute. and the crazy thing is that it's become completely normal. maybe that's how i get through the day: i just do.
sometimes, it's like the cancer doesn't even exist. other times, it's like the cancer is smothering me.
i hate the days that are ruined by the cancer. and i don't mean the days when j feels so awful from the treatments that he can barely lift his head. i mean the days when it all weighs so heavily on your mind and on your heart and on your soul that all the light is taken out of life. i hate to look back on a day and say, i wanted to go get a new toaster, but instead i was trapped in the house being driven insane by the idea of cancer.
because even though this sounds contrite, it means the cancer has won. and i don't want the cancer to win.
Monday, April 30, 2007
Saturday, April 28, 2007
(no) fun with doctors, the conclusion
so i know this is all jumping around and all, but i feel it is important to get all of this down; to keep the record full and up-to-date.
when we last left me, the wife, and my poor husband j, he had finally, after a harrowing day spent trapped in the dirty halls of the st vincent's er, arrived safely at sloan kettering where he sat some more. an unscheduled trip to the hospital over a weekend means a lot of sitting around and waiting for things to happen. you wait for the resident, who then has to wait to talk to your attending doctor, who then has to wait for the mri, who then have to take their sweet ass time in getting your head stuck into their machine. on the weekends in the hospital, even more than on a week day, NO ONE is in any hurry.
no one, that is, except me. which brings us to the breakdown over childcare. most of the time, for whatever reason (denial? insanity?), this all is actually managable. it sucks, but you can do it. you just get up and go to the doctors appointments and try to continue on with life. where it gets really stressful is when there is only one of you and you need to both be at the hospital with your husband and also be at home taking care of your 16-month-old son. that is the hardest part. it's like being the star of some bad home movie version of "Sophie's Choice": who are you going to choose? your seizure-stunned husband? your separation anxiety-phased son? and what about you? where are you in all of this? you get the world's scariest phone call, but when do you get to fall apart over it?
i don't know about anybody else, but for me, it's in the er and then again in the hospital room. there's this tension that exisits when you are the wife: you have all this stress because of your sick husband and your son, but you can't let on that you have the stress. personally speaking, i TRY not to let on, but then sometimes, it just all comes out and i blame my husband for everything! and then i feel like the WORST wife in THE ENTIRE WORLD because my husband has cancer and i am mad at him because i am stressed out about being stuck at the hospital with him and i feel like i am neglecting our son by leaving him with anyone for too long. oh the issues that cancer brings out in everyone; oh the baggage!
so as i am falling apart for the second, third, who's-counting-anymore time... we finally see the doctor with the mri results; well, the doctor and her 3-year-old daughter, which is a little weird cause how do you ask if your husband is about to die in front of a little wide-eyed blonde elf? (it turns out that doctors have babysitting issues too.) but the whole weekend was so bizarre, so surreal that it all just made sense to be told that the doctor did see some more tumor growth, but just beyond the resection cavity, in an area that would be too high-risk to operate on and that j would be needing some radiation (in the end, it turned out to be so much more than that, but that's a whole other post) and to respond with "are you going to go to the park today, little darling? our son is!"
in happier news, she discharged j so we were at least able to get back in time to enjoy some of the most beautiful day so far this year at the park with a. we take our happiness where we can get it.
when we last left me, the wife, and my poor husband j, he had finally, after a harrowing day spent trapped in the dirty halls of the st vincent's er, arrived safely at sloan kettering where he sat some more. an unscheduled trip to the hospital over a weekend means a lot of sitting around and waiting for things to happen. you wait for the resident, who then has to wait to talk to your attending doctor, who then has to wait for the mri, who then have to take their sweet ass time in getting your head stuck into their machine. on the weekends in the hospital, even more than on a week day, NO ONE is in any hurry.
no one, that is, except me. which brings us to the breakdown over childcare. most of the time, for whatever reason (denial? insanity?), this all is actually managable. it sucks, but you can do it. you just get up and go to the doctors appointments and try to continue on with life. where it gets really stressful is when there is only one of you and you need to both be at the hospital with your husband and also be at home taking care of your 16-month-old son. that is the hardest part. it's like being the star of some bad home movie version of "Sophie's Choice": who are you going to choose? your seizure-stunned husband? your separation anxiety-phased son? and what about you? where are you in all of this? you get the world's scariest phone call, but when do you get to fall apart over it?
i don't know about anybody else, but for me, it's in the er and then again in the hospital room. there's this tension that exisits when you are the wife: you have all this stress because of your sick husband and your son, but you can't let on that you have the stress. personally speaking, i TRY not to let on, but then sometimes, it just all comes out and i blame my husband for everything! and then i feel like the WORST wife in THE ENTIRE WORLD because my husband has cancer and i am mad at him because i am stressed out about being stuck at the hospital with him and i feel like i am neglecting our son by leaving him with anyone for too long. oh the issues that cancer brings out in everyone; oh the baggage!
so as i am falling apart for the second, third, who's-counting-anymore time... we finally see the doctor with the mri results; well, the doctor and her 3-year-old daughter, which is a little weird cause how do you ask if your husband is about to die in front of a little wide-eyed blonde elf? (it turns out that doctors have babysitting issues too.) but the whole weekend was so bizarre, so surreal that it all just made sense to be told that the doctor did see some more tumor growth, but just beyond the resection cavity, in an area that would be too high-risk to operate on and that j would be needing some radiation (in the end, it turned out to be so much more than that, but that's a whole other post) and to respond with "are you going to go to the park today, little darling? our son is!"
in happier news, she discharged j so we were at least able to get back in time to enjoy some of the most beautiful day so far this year at the park with a. we take our happiness where we can get it.
Friday, April 27, 2007
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.
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.
Thursday, April 26, 2007
a bit of history 1: the lump
the story of j's cancer is long. and drawn out. and hard to tell in one sitting. so i'll spread it out. this is the first installment.
the cancer that j was originally diagnosed with started out as what he described as a "fullness" in his neck, on the left side, just below where the jaw bone connects to the skull. i remember him occasionally complaining about some achiness when he chewed, in his ear. (this is what the doctors call "referential pain": pain that radiates from the tumor site. everything gets tight under the skin when a tumor is present.) other than the painful chewing and the fullness, he was asymptomatic.
and the fullness, which was really a lump, was there for a long time. it was there before we met, before we got married, while we got married, while i was pregnant, after a was born. sometimes, i look at this one picture i have of the two of them, a is maybe two months old, sleeping in j's arms. the way he is sleeping, the left side of j's neck is all stretched out along one side of the photograph. i have looked at the picture of number of times, studying j's neck to see if i can see the cancer. it's so strange to think this malignant thing was silently hitching a ride through all of these happy times.
i don't remember what it was that finally made him go to the doctor to have it checked out, but he did. he went first to a primary care doctor who sent him to a ear, nose and throat doctor. (we still get that guy's newsletter. it's a kind of interesting, in a nothing-to-read, stuck-on-the-subway kind of way.) the ENT doctor first guessed it might be cat scratch fever, (yes, that is a real disease. j was really mad at the cat for a few days.) but sent j to get a cat (no pun, but that is kinda funny) scan. he may even have biopsied it, i can't remember exactly. at that point, i wasn't paying very close attention to the whole thing. i was two months post-partum and j went to all the appointments during the day and he's a guy so he never really told me much about them. and i never in a million years thought about that lump being cancer.
what it felt like was when you have the flu or some other viral infection and that gland by your jaw swells. when it swells, it gets all hard, like a little marble and you can kind of roll it around under you skin. since all of this started, i have lost count of the number of times i have felt my neck in that area, trying to imagine what a cancerous lump feels like. if you feel your neck there, it all feels lumpy. you have your salivary glands and lymph nodes, short muscles that control your jaw; it's a lumpy mess up under there.
but that lump was cancer which i found out as i was taking a bus up third avenue to get the stitches taken out of a wisdom tooth i had had extracted a week earlier. j called me and said the doctor says it's malignant in the oddest tone. it was like the words that he was saying had nothing to do with how he was saying them. like, isn't that weird that the doctor would say something like that. i think my immediate thought was that the doctor had made some mistake. i have a pretty low opinion of the competency of doctors in general, so my first thought was how we (or more truthfully, i) were going to get this idiot straightened out. and then my phone battery started to run low and so we hung up and i went to the oral surgeon's office.
i guess i was in denial, or perhaps shock. it's not that i didn't think that cancer could happen to people: my mother's father and mother both died of cancer; an old boyfriend's father had died of cancer while he and i were together; a friend had just gone through treatment for breast cancer. i knew that cancer happened; i just didn't think of it happening to someone like j.
often i think of that movie "american splendor" and when harvey pikar finds out he has cancer. his wife joyce reassures him that she will take care of him by telling him she's from a very sick family: she knows illness. she seems like she might even enjoy it. sometimes i feel like that. i too am from a very sick family.
the cancer that j was originally diagnosed with started out as what he described as a "fullness" in his neck, on the left side, just below where the jaw bone connects to the skull. i remember him occasionally complaining about some achiness when he chewed, in his ear. (this is what the doctors call "referential pain": pain that radiates from the tumor site. everything gets tight under the skin when a tumor is present.) other than the painful chewing and the fullness, he was asymptomatic.
and the fullness, which was really a lump, was there for a long time. it was there before we met, before we got married, while we got married, while i was pregnant, after a was born. sometimes, i look at this one picture i have of the two of them, a is maybe two months old, sleeping in j's arms. the way he is sleeping, the left side of j's neck is all stretched out along one side of the photograph. i have looked at the picture of number of times, studying j's neck to see if i can see the cancer. it's so strange to think this malignant thing was silently hitching a ride through all of these happy times.
i don't remember what it was that finally made him go to the doctor to have it checked out, but he did. he went first to a primary care doctor who sent him to a ear, nose and throat doctor. (we still get that guy's newsletter. it's a kind of interesting, in a nothing-to-read, stuck-on-the-subway kind of way.) the ENT doctor first guessed it might be cat scratch fever, (yes, that is a real disease. j was really mad at the cat for a few days.) but sent j to get a cat (no pun, but that is kinda funny) scan. he may even have biopsied it, i can't remember exactly. at that point, i wasn't paying very close attention to the whole thing. i was two months post-partum and j went to all the appointments during the day and he's a guy so he never really told me much about them. and i never in a million years thought about that lump being cancer.
what it felt like was when you have the flu or some other viral infection and that gland by your jaw swells. when it swells, it gets all hard, like a little marble and you can kind of roll it around under you skin. since all of this started, i have lost count of the number of times i have felt my neck in that area, trying to imagine what a cancerous lump feels like. if you feel your neck there, it all feels lumpy. you have your salivary glands and lymph nodes, short muscles that control your jaw; it's a lumpy mess up under there.
but that lump was cancer which i found out as i was taking a bus up third avenue to get the stitches taken out of a wisdom tooth i had had extracted a week earlier. j called me and said the doctor says it's malignant in the oddest tone. it was like the words that he was saying had nothing to do with how he was saying them. like, isn't that weird that the doctor would say something like that. i think my immediate thought was that the doctor had made some mistake. i have a pretty low opinion of the competency of doctors in general, so my first thought was how we (or more truthfully, i) were going to get this idiot straightened out. and then my phone battery started to run low and so we hung up and i went to the oral surgeon's office.
i guess i was in denial, or perhaps shock. it's not that i didn't think that cancer could happen to people: my mother's father and mother both died of cancer; an old boyfriend's father had died of cancer while he and i were together; a friend had just gone through treatment for breast cancer. i knew that cancer happened; i just didn't think of it happening to someone like j.
often i think of that movie "american splendor" and when harvey pikar finds out he has cancer. his wife joyce reassures him that she will take care of him by telling him she's from a very sick family: she knows illness. she seems like she might even enjoy it. sometimes i feel like that. i too am from a very sick family.
(no) fun with doctors
this last weekend was one for the record books: seizure on the train, trips to the emergency room, breakdowns over childcare, hospital transfers, more cancerous growth.
j had a seizure on the F train and when he came to he was an ambulance being taken to my new most-hated hospital, st. vincent's. he spent over 12 hours in their er, while they were doing the paperwork to get him transferred to sloan, a request i made at about hour 2 of the 12 hours. let me vent for a minute: the doctors at st. vincents are only slightly less bad than the nurses, who are the worst. we had a very bad experience at st. vincent's.
the whole experience brought up a couple of issues that crop up from time to time: the need for j to have specialized care and trusting one's instinct over what a doctor (or group of doctors or nurses) tells you. the er doctor at st. vincent's made a huge to-do about how unstable j was and how he shouldn't be moved without ANY knowledge of his medical history. i chalk this up to ego on the part of the doctor. there are a lot of doctors out there who are more interested in being right than on doing what is the best for the patient, which is why it scares the hell out of me when they put j, unscheduled, into the hospital.
anyhow, when i suggested rather than go through all the red tape to get him transferred, which took about four times as long as this doctor said it would, could we just get into a cab and head up to sloan, the doctor gave us a big scare story about j having another seizure in the cab and cardiac arrest, blah...blah...blah... which made us think, against our intution, that we should follow her advice. also, if we left, the doctor said it would be "against medical advice" which means that our insurance wouldn't cover the trip to the er. (they can always get you in the pocketbook.)
as it turns out, this doctor was not only wrong, but she lied to us about it as well and adding insult to injury, we just got a denial of coverage from our insurance for the ambulance ride the doctor was insistent upon j taking.
as it turns out, j's doctor at sloan, who i had the er doctor contact about making the transfer, told the er doctor to tell us to jump in a cab and get up to sloan ASAP. we only found that out on saturday when we saw her at sloan, j having been finally transported there at 9:30pm, 13 hours after arriving at st. vincent's.
cancer sucks, but sometimes the doctors and the nurses and all their bullshit suck more.
more on all of this later!!!
j had a seizure on the F train and when he came to he was an ambulance being taken to my new most-hated hospital, st. vincent's. he spent over 12 hours in their er, while they were doing the paperwork to get him transferred to sloan, a request i made at about hour 2 of the 12 hours. let me vent for a minute: the doctors at st. vincents are only slightly less bad than the nurses, who are the worst. we had a very bad experience at st. vincent's.
the whole experience brought up a couple of issues that crop up from time to time: the need for j to have specialized care and trusting one's instinct over what a doctor (or group of doctors or nurses) tells you. the er doctor at st. vincent's made a huge to-do about how unstable j was and how he shouldn't be moved without ANY knowledge of his medical history. i chalk this up to ego on the part of the doctor. there are a lot of doctors out there who are more interested in being right than on doing what is the best for the patient, which is why it scares the hell out of me when they put j, unscheduled, into the hospital.
anyhow, when i suggested rather than go through all the red tape to get him transferred, which took about four times as long as this doctor said it would, could we just get into a cab and head up to sloan, the doctor gave us a big scare story about j having another seizure in the cab and cardiac arrest, blah...blah...blah... which made us think, against our intution, that we should follow her advice. also, if we left, the doctor said it would be "against medical advice" which means that our insurance wouldn't cover the trip to the er. (they can always get you in the pocketbook.)
as it turns out, this doctor was not only wrong, but she lied to us about it as well and adding insult to injury, we just got a denial of coverage from our insurance for the ambulance ride the doctor was insistent upon j taking.
as it turns out, j's doctor at sloan, who i had the er doctor contact about making the transfer, told the er doctor to tell us to jump in a cab and get up to sloan ASAP. we only found that out on saturday when we saw her at sloan, j having been finally transported there at 9:30pm, 13 hours after arriving at st. vincent's.
cancer sucks, but sometimes the doctors and the nurses and all their bullshit suck more.
more on all of this later!!!
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