Around the time Dad started getting really sick (perhaps when he went to see that quack doctor), I stepped into Skylight Books and bought the book Saying Goodbye: A Guide to Coping with a Loved One's Terminal Illness. I read it in a bunch of quick gulps that weekend, but it all seemed distant, something that happened to other people. The anecdotes, the astute observations, the practical information contained within didn't seem to apply.
After Dad died, I sat down with the book again. Yes, I know: hindsight is 20/20. But what I found was something stranger. Rather than seeing the situation echoed in the book, I still couldn't find it. Sure, my reactions to his illness and death seemed normal enough. But Dad's reaction to his own illness and impending death? Not so much.
In this book, there wasn't an anecdote that described the ill person as refusing to acknowledge his illness as terminal. Everywhere in the book, the family members were the ones unwilling to discuss the inevitable, keeping up the denial for as long as possible, while the dying person wanted to discuss the end game. In Dad's case, though, my sister and I knew early on how this was going to end. It sucked, but we knew. And when the illness quickly took over his life, reducing it to rubble, we longed for some sort of agreement from him. When was he going to utter the words "death," "dying," and "terminal?"
The answer was never. He charged ahead with more treatment, more hospitalization, more blood transfusions, even as it became clear it was futile. He never once admitted he was dying to us, only saying things like, "I must get stronger." This was perceived by many as evidence of Dad's strength and warrior spirit. I guess I don't really see it that way. I think he was terrified and pissed, and remained that way almost until the end, when he was too out of it to do or say anything anymore, and hospice was finally called.
I felt bad, not being able to be a cheerleader. God knows, my stepmother and stepsister certainly were. Dad's friends certainly were, marching into his hospital room and telling him he looked "great," which was a total insult to everyone's intelligence. The Death Elephant was lounging prominently in the middle of the room, taking huge dumps, and these people were just side stepping it constantly. It made me feel crazy.
I do believe that, toward the last week or so of his life, he did finally admit it to my aunt, his sister. She came to see him, and he told her, "Well, I guess the next time you'll be here will be for a funeral." But he never said anything of the kind to us. Unlike so many of the dying in the book I read, Dad never discussed his arrangements in his will, never truly specified memorial service options, never truly said goodbye. And that's a shame, because he was given time to do all those things, time that some people don't get.
I know that ultimately it was Dad's choice, because it was his illness and his death. But when an illness goes on for a long time, it radically affects the family. It wasn't just him anymore. I worry that he thrashed and fought in terror and denial until he ran out of energy, and then didn't have any peace at the end. And although I think I said everything to him I needed to say, it was mostly met on his end with silence (and not just because he had trouble talking). How lonely for everyone.
Monday, July 30, 2012
Saturday, July 28, 2012
What the Hell Happened: A Chronology
You'd think after watching my father go through this relatively short (as I said, eleven month) ordeal, every aspect would be burned into my psyche. But that's just not true. Terminal illness is tricky. It has ups and downs (in Dad's case, mostly downs), and half the time you're not just dealing with the sick person, but with the other relatives' bullshit. I have bullshit, too, so I mean that in the kindest possible way. This basic chronology might be helpful, just to get the timing out of the way.
In July 2011, my Dad was struck by what the doctors thought was diverticulitis. He had pain in his abdomen, nausea, weakness. Although he had had cancer three times before (I'll get to that in later posts), he had been getting regular scans and everything looked normal. Ok.
But when the surgeon went in to fix the diverticulitis, he found cancer. A lot of cancer. Enough cancer that he decided it was way above his pay grade to remove it all, and stitched Dad back up. It turned out to be leiomyosarcoma, a very rare soft tissue cancer in his small intestine. And it was a recurrence; he'd had several tumors removed seven years prior. It's a hard cancer to treat. It doesn't respond well to most chemo or to radiation (plus, there's a big limit on radiation of small intestine anyway). The only real "cure" for it is to just cut it out.
Enter the surgical oncologist (one of his only doctors I really liked). By this time, it's September, at least (see, time really does fold and morph with this stuff), and Dad needs to have the larger tumor removed. This surgeon manages it: a tumor surrounded by its own fancy blood supply the size of a grapefruit. How anyone could miss this on a CAT scan is beyond me; my faith in this diagnostic tool is forever shaken. Obviously, this is a big surgery. The surgeon cuts out everything he can see, but that doesn't mean there aren't cancer cells happily proliferating anyway. Dad needs further treatment.
He decides to go to some sarcoma specialist at Dana Farber in Boston. This guy is the final word on sarcomas, leiomyosarcomas in particular. He even does clinical trials. Dad's original appointment with the guy was in October, but that big surgery makes that date impossible. It's pushed into January. Meanwhile, Dad is in a lot of pain this whole time. He's taking tons of pain meds, including oral morphine. He's still working, still driving, but obviously in distress.
January: He meets with the Dana Farber guy. It does not go well. Dad is told that the cancer "is exploding" inside him; the guy has seen this before. "Run, don't walk, to get chemotherapy," he's told coldly by the doctor. Dad and his wife are devastated. Paralyzed, even. He's resistant to the idea of chemo. It will make his life terrible. But his life is already pretty terrible and pain filled. Around this point, he's given a 2% cure rate. That sucks.
Desperate for some other, more positive news, Dad goes for the alternative medicine treatment: Dr. Nicholas Gonzalez. This is the only doctor's name I will mention on this blog, mostly because he's unethical and should lose his license (at least you know I'm totally biased here). He meets with Gonzalez in New York in late January. He's told that, if he follows a strict diet, takes up to 150 of his special supplements a day, and does coffee enemas (a very bad idea for someone with diverticulitis, which he actually did have), he can "cure" him. In fact, this guy gives Dad an 80% cure rate using his protocol.
Naturally, this gives Dad hope. He's in a fragile state. He doesn't want to do chemo. This guy is offering him odds that are 78% better than what he's been given. Gonzalez feeds on his desperation, gets him to buy the supplements and the expensive organic coffee that's going to go up the wrong orifice. There's nothing any of us can say without sounding "negative."
But Dad's body has other plans. The tumors inside him (no, they weren't all taken out, or they grew like weeds) start to bleed, and they bleed out into his abdomen. Unable to eat 150 supplements, etc, Dad gives in and gets through one round of chemo. And then, disaster.
The bleeding is out of control. He needs blood, lots of it, sometimes two units per day. It's not sustainable. The doctors consult (in a rare act of unity) and agree on a radical, last ditch surgery to fix the problem. Dad hasn't got great odds of surviving it, mostly because they don't know what's really going on inside him.
Dad, high as a kite on the morphine drip we're now pushing for him every seven minutes, says goodbye in a rather classic "Terms of Endearment" style, goes in for surgery, and.... survives.
Yes, he survives the surgery beautifully. At least, until he develops pneumonia through some lovely e-coli that got through his stent. And because he's had a round of chemo, his immune system is having trouble fighting it off. The doctors decide to sedate him, really induce a coma, in order to intubate him and let the antibiotics work.
Dad is put under in ICU. He's unconscious for five weeks. The family takes turns visiting him, sleeping yet still wincing in pain, for five whole weeks. The wincing, it turns out, is due to a complication of morphine sensitivity: Dad is an addict who's drug has turned on him and he must be weaned off onto Methodone. It's unclear whether he'll come out of it without some other massive complications, like never walking again because of muscle atrophy. But he does.
I cried the first time I heard his voice after five weeks. He was confused (he had, after all, just had one of the world's longest naps), but was otherwise ok. He started physical therapy for his drop foot and atrophy, and made strides.
I believe he had roughly two good weeks at home before everything started to go wrong again. Although he'd been trying to eat, he was steadily losing weight. Something was up with his digestive system. Maybe it really never recovered from the surgery. Maybe the cancer was screwing it up. The doctors kept saying the cancer hadn't spread, that it wasn't on the scans, but since it never showed up on the CAT scans before, none of us took that seriously. The doctors inserted a tube directly into Dad's stomach, so he could have his food poured in there.
It didn't really matter. He kept losing weight. And his hemoglobin stats kept sinking. It became a cycle: go to the hospital, get some blood, rest, go home, falter, fatigue, then back to the hospital again. Was he bleeding? Probably, although the doctors weren't going to do any surgery to find out (he wouldn't have survived it, anyway). Soon, he was down to under 140 pounds (he was 6'5") and unable to walk. He was incontinent, partially due to a series of UTIs he couldn't seem to fight off. And, cruelest of all, he lost his voice. There were varying theories on that: a bunch of phlegm he couldn't cough up, weakness in his diaphragm because he was essentially starving, depression. It was frustrating for everyone.
He slept more, interacted less. He had moments of real lucidity and energy, but they never lasted. He couldn't digest the stomach feedings anymore, and his weight dropped further. Hospice wasn't called in until he was pretty far gone. He didn't seem to be in pain, although it's my understanding that starving to death is very painful; hopefully hospice drugged him enough so that he felt nothing.
He died at 9:25 am on July 9, 2012. His nurse and housekeeper (who had also been acting as a nurse) were in the room with him. I'm glad they were there, because Dad really liked them.
In July 2011, my Dad was struck by what the doctors thought was diverticulitis. He had pain in his abdomen, nausea, weakness. Although he had had cancer three times before (I'll get to that in later posts), he had been getting regular scans and everything looked normal. Ok.
But when the surgeon went in to fix the diverticulitis, he found cancer. A lot of cancer. Enough cancer that he decided it was way above his pay grade to remove it all, and stitched Dad back up. It turned out to be leiomyosarcoma, a very rare soft tissue cancer in his small intestine. And it was a recurrence; he'd had several tumors removed seven years prior. It's a hard cancer to treat. It doesn't respond well to most chemo or to radiation (plus, there's a big limit on radiation of small intestine anyway). The only real "cure" for it is to just cut it out.
Enter the surgical oncologist (one of his only doctors I really liked). By this time, it's September, at least (see, time really does fold and morph with this stuff), and Dad needs to have the larger tumor removed. This surgeon manages it: a tumor surrounded by its own fancy blood supply the size of a grapefruit. How anyone could miss this on a CAT scan is beyond me; my faith in this diagnostic tool is forever shaken. Obviously, this is a big surgery. The surgeon cuts out everything he can see, but that doesn't mean there aren't cancer cells happily proliferating anyway. Dad needs further treatment.
He decides to go to some sarcoma specialist at Dana Farber in Boston. This guy is the final word on sarcomas, leiomyosarcomas in particular. He even does clinical trials. Dad's original appointment with the guy was in October, but that big surgery makes that date impossible. It's pushed into January. Meanwhile, Dad is in a lot of pain this whole time. He's taking tons of pain meds, including oral morphine. He's still working, still driving, but obviously in distress.
January: He meets with the Dana Farber guy. It does not go well. Dad is told that the cancer "is exploding" inside him; the guy has seen this before. "Run, don't walk, to get chemotherapy," he's told coldly by the doctor. Dad and his wife are devastated. Paralyzed, even. He's resistant to the idea of chemo. It will make his life terrible. But his life is already pretty terrible and pain filled. Around this point, he's given a 2% cure rate. That sucks.
Desperate for some other, more positive news, Dad goes for the alternative medicine treatment: Dr. Nicholas Gonzalez. This is the only doctor's name I will mention on this blog, mostly because he's unethical and should lose his license (at least you know I'm totally biased here). He meets with Gonzalez in New York in late January. He's told that, if he follows a strict diet, takes up to 150 of his special supplements a day, and does coffee enemas (a very bad idea for someone with diverticulitis, which he actually did have), he can "cure" him. In fact, this guy gives Dad an 80% cure rate using his protocol.
Naturally, this gives Dad hope. He's in a fragile state. He doesn't want to do chemo. This guy is offering him odds that are 78% better than what he's been given. Gonzalez feeds on his desperation, gets him to buy the supplements and the expensive organic coffee that's going to go up the wrong orifice. There's nothing any of us can say without sounding "negative."
But Dad's body has other plans. The tumors inside him (no, they weren't all taken out, or they grew like weeds) start to bleed, and they bleed out into his abdomen. Unable to eat 150 supplements, etc, Dad gives in and gets through one round of chemo. And then, disaster.
The bleeding is out of control. He needs blood, lots of it, sometimes two units per day. It's not sustainable. The doctors consult (in a rare act of unity) and agree on a radical, last ditch surgery to fix the problem. Dad hasn't got great odds of surviving it, mostly because they don't know what's really going on inside him.
Dad, high as a kite on the morphine drip we're now pushing for him every seven minutes, says goodbye in a rather classic "Terms of Endearment" style, goes in for surgery, and.... survives.
Yes, he survives the surgery beautifully. At least, until he develops pneumonia through some lovely e-coli that got through his stent. And because he's had a round of chemo, his immune system is having trouble fighting it off. The doctors decide to sedate him, really induce a coma, in order to intubate him and let the antibiotics work.
Dad is put under in ICU. He's unconscious for five weeks. The family takes turns visiting him, sleeping yet still wincing in pain, for five whole weeks. The wincing, it turns out, is due to a complication of morphine sensitivity: Dad is an addict who's drug has turned on him and he must be weaned off onto Methodone. It's unclear whether he'll come out of it without some other massive complications, like never walking again because of muscle atrophy. But he does.
I cried the first time I heard his voice after five weeks. He was confused (he had, after all, just had one of the world's longest naps), but was otherwise ok. He started physical therapy for his drop foot and atrophy, and made strides.
I believe he had roughly two good weeks at home before everything started to go wrong again. Although he'd been trying to eat, he was steadily losing weight. Something was up with his digestive system. Maybe it really never recovered from the surgery. Maybe the cancer was screwing it up. The doctors kept saying the cancer hadn't spread, that it wasn't on the scans, but since it never showed up on the CAT scans before, none of us took that seriously. The doctors inserted a tube directly into Dad's stomach, so he could have his food poured in there.
It didn't really matter. He kept losing weight. And his hemoglobin stats kept sinking. It became a cycle: go to the hospital, get some blood, rest, go home, falter, fatigue, then back to the hospital again. Was he bleeding? Probably, although the doctors weren't going to do any surgery to find out (he wouldn't have survived it, anyway). Soon, he was down to under 140 pounds (he was 6'5") and unable to walk. He was incontinent, partially due to a series of UTIs he couldn't seem to fight off. And, cruelest of all, he lost his voice. There were varying theories on that: a bunch of phlegm he couldn't cough up, weakness in his diaphragm because he was essentially starving, depression. It was frustrating for everyone.
He slept more, interacted less. He had moments of real lucidity and energy, but they never lasted. He couldn't digest the stomach feedings anymore, and his weight dropped further. Hospice wasn't called in until he was pretty far gone. He didn't seem to be in pain, although it's my understanding that starving to death is very painful; hopefully hospice drugged him enough so that he felt nothing.
He died at 9:25 am on July 9, 2012. His nurse and housekeeper (who had also been acting as a nurse) were in the room with him. I'm glad they were there, because Dad really liked them.
Friday, July 27, 2012
Stumbling Around
It's been about three weeks since my Dad died. And he was sick for almost eleven months prior to his death, a time span that should seem short but actually stretched on in a most torturous manner.
It's not that his death was a surprise. Watching a decline such as his makes death the obvious last act. But now, we wander around, wondering how the world looks the same and yet we all feel vaguely lousy. You don't forget your father has died, exactly, but it can't be on your mind every minute. Going to the market, Swiffering the muddy floor, getting coffee all take a spot on daily lists. This is life. Life goes on (as do cliches). But then, there's a dizzying moment of remembering Dad driving us somewhere and cursing madly, or picking out cheese at Trader Joe's for a party (lots of smelly brie), or I drive past Cassell's and remember how we used to get burgers there, and the world tips in a sickening fashion. He's not here anymore.
In fact, I'm not sure where he is, quite literally. Who has his ashes? Are they in a box at the Neptune Society? Did my stepmother pick them (him???) up? Should I pick them (him???) up if she hasn't done it? I wasn't present for his death, never saw the body (completely my choice), so those ashes are the only evidence that some part of his body is still here. Although, frankly, if you've ever seen "cremains," you know it could all just be leftover chimney sweepings from half of Los Angeles. It's probably not even him.
Sometimes I think it would be far easier to be religious. It would all be organized and structured. If we were practicing Jews, he would've been in the ground by now, the funeral and sitting shivah completed, rugalach scarfed and respects paid. But no, we're heathens, or at least confused goy/half Jews, and there hasn't been anything planned yet. Hazy plans for a memorial service in "six to eight weeks," which probably, given family schedules and the amount of pomp and circumstance (Dad was a big deal, you know), will be stretched to four months from now. There's no way to finish it, drive the nail into the coffin, rend our clothing and howl if we'd like and then, finally, get back to the grocery shopping without distraction.
It's not that his death was a surprise. Watching a decline such as his makes death the obvious last act. But now, we wander around, wondering how the world looks the same and yet we all feel vaguely lousy. You don't forget your father has died, exactly, but it can't be on your mind every minute. Going to the market, Swiffering the muddy floor, getting coffee all take a spot on daily lists. This is life. Life goes on (as do cliches). But then, there's a dizzying moment of remembering Dad driving us somewhere and cursing madly, or picking out cheese at Trader Joe's for a party (lots of smelly brie), or I drive past Cassell's and remember how we used to get burgers there, and the world tips in a sickening fashion. He's not here anymore.
In fact, I'm not sure where he is, quite literally. Who has his ashes? Are they in a box at the Neptune Society? Did my stepmother pick them (him???) up? Should I pick them (him???) up if she hasn't done it? I wasn't present for his death, never saw the body (completely my choice), so those ashes are the only evidence that some part of his body is still here. Although, frankly, if you've ever seen "cremains," you know it could all just be leftover chimney sweepings from half of Los Angeles. It's probably not even him.
Sometimes I think it would be far easier to be religious. It would all be organized and structured. If we were practicing Jews, he would've been in the ground by now, the funeral and sitting shivah completed, rugalach scarfed and respects paid. But no, we're heathens, or at least confused goy/half Jews, and there hasn't been anything planned yet. Hazy plans for a memorial service in "six to eight weeks," which probably, given family schedules and the amount of pomp and circumstance (Dad was a big deal, you know), will be stretched to four months from now. There's no way to finish it, drive the nail into the coffin, rend our clothing and howl if we'd like and then, finally, get back to the grocery shopping without distraction.
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