Latest News from Marcia
April 20, 2006 from Marcia
Well, I seem to have made it through the first round of chemo in pretty good shape. I've gone back to work a bit, am keeping up my regular walks, which really seem to help, and it's finally stopped raining out here. Saw my oncologist Monday and he told me that I should keep on doing whatever I've been doing, because I look great. That made me feel pretty good, and also reminded me that I should let all you folks out there know that whatever you've been doing on my account, please keep doing it! It seems to be working. I'm scheduled to start round #2 on Thursday, April 27 subject, as always, to the availability of beds. If all goes as planned, I should complete chemo some time in June. Then comes radiation, which should be a cakewalk after this. All you gluttons for punishment are welcome to read my latest rant, which is attached. Please don't feel compelled to do so, and don't worry -- I am not writing a book! (As of today, it looks like my insurance company is going to take care of me after all, thus depriving me of my primary incentive for writing anything at all.) But thanks again for the notes, cards, calls, prayers and vibes. I love all of you! Marcia
_______________________________________________________
Anger is not productive in chemotherapy. The idea is to stay positive and to focus what little energy you have on growing healthy cells and helping the good parts of your body to resist the poison. Never mind that you are attached to vials of chemicals that are being pumped directly into your bloodstream, that your body has been hacked up and resewn and stuffed with subcutaneous chemical delivery devices, that this horrible disease seemingly arrived out of nowhere and silently attacked, canceling all plans and calling into question your entire life up until that point and beyond. It is not helpful to dwell on these matters, or to direct one’s natural feelings of anger toward them. For this, we have the insurance industry.
My good friends in the insurance industry, having once interrupted a growing relationship in which I finally found myself willing to accept this strange and brutal course of treatment, sending me elsewhere to start anew – take a deep breath, assess the situation, okay, let’s go this way, then, I can handle it – and then, presumably, having authorized four days of hospitalization with assorted procedures and prescriptions, is now taking its time to consider whether or not to authorize the delivery of nulasta and aranesp – growth factors to maintain my white and red blood cell counts as my body responds to 72 hours of continuous infusions at the hospital. These drugs are supposed to be administered within the first few days after treatment ends, so that the bone marrow can grow new cells to combat infection and who knows what else. There I was, getting trained and drilled in self-injection at the hospital (at the expense of an innocent pad of gauze that was supposed to serve as my fatty midriff) so that I could be discharged and have needles, drugs, syringes and all conveniently delivered to my home, and only bemoaning the apparent fact that my insurance company was evidently not going to spring for the one-time-only, clinic-administered alternative after all. This sounded a bit more to my liking, but I understood that at $6,000 per injection they might balk. I’m a big girl, and I can poke myself with a needle if need be. Operating the various needles and syringes, and getting the correct amount in the syringe, was a bit challenging, but my sister the scientist with the PhD would be there for the first few days to help with that stuff.
Dr. Jahan’s clinical nurse, Evelyn, called when I got home and said I should expect to receive delivery on Tuesday. On Wednesday, when I called to let her know that no delivery had been made, she gave me the direct number of the company in Florida and suggested I give them a call. “Tell them you need them today,” she said. “Tomorrow will actually be okay, but tell them today.” But when nothing had happened by Thursday, and we got a direct line to Jesus, we learned that everything was waiting for authorization by the insurance company.
If this were a song, “waiting for authorization by the insurance company” would be its chorus. Now, as I understand it, these are not some additional medications that have been prescribed based on any specific observation of my condition or response to treatment. I think this is supposed to be part of the treatment. Doxorubicin and ifosfamide kill white and red blood cells, and nulasta and aranesp are given within the first week after chemo (preferably the next day) to help new ones to grow. So, if I understand this properly, the insurance company authorized the infusion of drugs that will lower my blood cell counts, but before authorizing anything to counteract that effect they need……what? They authorized the poison, but not the antidote?
And just how soon do I need these drugs? Well, on Friday, Evelyn locates someone at her clinic who can provide me with the same drugs, that they have for use in a clinical trial. Then, she explains, when the drugs get delivered, we can just return them to the clinical trials. (And if the insurance company doesn’t authorize the drugs? I ask. Well, then at least you’ll get them, she says.)
So maybe there is a place for the modern medical insurance system in the treatment of cancer: a focus for all of one’s negative thoughts and frustrations. If you don’t have these already, there are numerous opportunities to obtain more from a vast store of idiocies. Channel that anger. Death to the insurance companies, those morons!
When I was finally admitted to the hospital for chemotherapy I was determined to be positive and not get bogged down in what I would normally consider a healthy and deserved skepticism about this whole course of treatment, from its theoretical underpinnings to its actual execution. I figured I was going to get the works. Down in radiology, where they installed a port beneath my skin and tube that snakes into my vena cava, they asked if I’d be there for 30 days! No way, say I, I’m here for four. I was assigned to a room with a roommate who, on hearing this news, said she hadn’t known they would admit anyone to 11Long for only four days. She’d been treated for leukemia for over a year, and was awaiting a stem cell transplant from her sister when she “fell into remission” and had to return for seven straight weeks of chemo that she was only then completing. I took a big, humble gulp. Elizabeth was awesome. She showed me around the hall, taught me the password to the hall pantry where ices, juice, popsicles and ice cream are stored, showed me the beautiful solarium and the family room with games, books, and computers, reminded me (repeatedly) to unplug my pole before leaving bedside, and counseled me to take over her side of the room as soon as she was discharged. She had the five big-paneled windows looking over the eucalyptus forest and killer views of the city; my bed faced the nurses’ fluorescent light and was adjacent to the bathroom. But she told me she slept late in the mornings and urged me to open the shades whenever I wanted, so I could gaze at the trees and morning sunlight when I awoke. She had a beautiful bald head and a pole full of plastic jugs of her own. When she was finally discharged and was leaving with her very nice husband, I wished her all the best and lost no time in negotiating with the nursing and housekeeping staff for the bed change. I did not shrink from the use of questionable techniques, such as bribery. I had a nice batch of homemade brownies and was not afraid to use it.
It was much later that evening, long after I was comfortably settled on the penthouse side of the room when my next roommate arrived. Diane was not happy. Like me, she had been scheduled for admission subject to the availability of a bed, but her originally scheduled date was three days earlier and had been repeatedly postponed, including twice earlier that same day. It was late at night now, and I was heading for the bathroom when the night nurse, Katrina, introduced us in her charming Irish lilt: “This is Marcia. She snores. If it bothers you, wake her up.” I had never been introduced to anyone in quite that way, and said so, but gave a hearty hello and trooped off to bed. Into the evening and throughout the next day, over the constant drone of her television set, shards of Diane’s story drifted across the ineffectual curtain separating our beds. She had previously had a tumor removed from her brain that she said was benign, and CT scans that she said were clear, but she was being admitted for chemo anyway. Well, she was being admitted for another CT scan, an MRI, some kind of spinal tap and some other presumably diagnostic procedure, and then chemo, she said. She and her husband had a 17-year-old son with Down syndrome and leukemia, who was getting chemo over at another hospital in the city. She eventually told me most of this herself, although she also told every other person who came into her room, most of whom were apologizing for this or that delay in scheduling the various procedures. She read most of them the riot act. Well, who could blame her. After all that waiting around she spent her first night and half the next day sitting in her bed, talking and watching TV and waiting for something to happen. She could just as well have been at home. She had a few visitors, and her husband was with her much of the time, going over and over everything. At one point I heard her husband’s gruff voice say something to the effect of “You’re going through with this Diane, and that’s all there is to it.” I was horrified, but maybe it wasn’t what it sounded like. They were both kind of gruff, and displayed a sort of sardonic take on things that I recognized as not necessarily being what it seemed, having inclined in that direction myself at times. Still, it was hard to be in a room so filled with anger. I stuck on my headphones and blasted Marvin Gaye into my ears instead.
One night she came and asked me whether I, too, had been through the litany of diagnostic tests. The answer was yes, certainly the MRI and CT scan, although none of this spinal stuff, and over a period of time – I wasn’t admitted to any hospital; I just marched into this or that radiology lab or whatever, took the test, and marched out again. You seem to have an awfully good attitude, she told me. Yeah, I’ve been working on it, I said. It hasn’t always been so good. I told her my whole long story - one that even I am tired of hearing - about how nobody was doing any chemo on me and how I went into surgery against the advice of every doctor involved in my treatment at the time but somehow came out deciding that this is what I should do and now here I am, trying to make the best of it. “So maybe you need to find what it is that will make you want to do this,” I lamely suggested. “Don’t do it for your husband. He seems like a nice man, but this is about you.”
“Oh, I don’t object to the chemo,” said Diane. “I just don’t want all those tests.”
I gulped. “Gee, I don’t know, I think you want the tests. These people know what they’re doing here, and they’re real careful. If they’re going to douse you with poison, you want to be sure they do it right, don’t you?”
Michael came in at that point, and the conversation sort of shifted. He later told me that he thought Diane was getting the words for things mixed up, and maybe was confused as a result of whatever brain thing was going on with her. I hadn’t considered that possibility, but it helped, because none of what she’d said to me really made much sense.
But later, her voice came across the curtain: “I don’t know how old you are, Marcia, but I’m fifty-five, and I don’t see the need for any of this at this point.”
“I’m fifty-one,” I replied in a tiny voice, and that was all. But inside my head I was screaming. ARE YOU OUT OF YOUR MIND? You’re YOUNG! What about your SON?!?
If I were my mother, or if it were my mother in my bed instead of me, I would probably have talked with Diane into the night. We might have become friends, and I would have called to see how she was doing and helped her out with little things along the way. By now, I would know her entire history and I would tell my daughters about her. But I was just trying to get through chemo with my precariously good attitude intact and get the heck out of there. When they let me go, I wished her the best of luck and away I went. Maybe all Diane needed was a good old-fashioned insurance problem.
Oh, and what about my insurance problem? Well, I’ve been out of the hospital for a week now and there’s still been no decision made about the growth factor delivery. It turns out that what Evelyn provided me, and what was requested, was, in fact, two $6000 injections. The alternative, which I’d guess costs somewhat less, is daily injections for ten days after treatment. Either way, the ten days is just about up. My bones are aching as a result of the nulastin, and as a sign that new healthy white blood cells are being produced by my bone marrow, but somewhere, someone is still doing the paperwork. If not for the ability and willingness of UC Med Center to cough up $12,000 worth of drugs when needed, I guess I just wouldn’t have gotten them. Maybe, with a really compromised immune system, we’d get to negotiate over the treatment of those consequences.
Dr. Jahan and Evelyn have determined to resolve this with the insurance company before the next treatment begins in a week or so. I hope the insurance company will at least pay to replace what was borrowed, even if I have to settle for daily injections in the future.
Well, I seem to have made it through the first round of chemo in pretty good shape. I've gone back to work a bit, am keeping up my regular walks, which really seem to help, and it's finally stopped raining out here. Saw my oncologist Monday and he told me that I should keep on doing whatever I've been doing, because I look great. That made me feel pretty good, and also reminded me that I should let all you folks out there know that whatever you've been doing on my account, please keep doing it! It seems to be working. I'm scheduled to start round #2 on Thursday, April 27 subject, as always, to the availability of beds. If all goes as planned, I should complete chemo some time in June. Then comes radiation, which should be a cakewalk after this. All you gluttons for punishment are welcome to read my latest rant, which is attached. Please don't feel compelled to do so, and don't worry -- I am not writing a book! (As of today, it looks like my insurance company is going to take care of me after all, thus depriving me of my primary incentive for writing anything at all.) But thanks again for the notes, cards, calls, prayers and vibes. I love all of you! Marcia
_______________________________________________________
Anger is not productive in chemotherapy. The idea is to stay positive and to focus what little energy you have on growing healthy cells and helping the good parts of your body to resist the poison. Never mind that you are attached to vials of chemicals that are being pumped directly into your bloodstream, that your body has been hacked up and resewn and stuffed with subcutaneous chemical delivery devices, that this horrible disease seemingly arrived out of nowhere and silently attacked, canceling all plans and calling into question your entire life up until that point and beyond. It is not helpful to dwell on these matters, or to direct one’s natural feelings of anger toward them. For this, we have the insurance industry.
My good friends in the insurance industry, having once interrupted a growing relationship in which I finally found myself willing to accept this strange and brutal course of treatment, sending me elsewhere to start anew – take a deep breath, assess the situation, okay, let’s go this way, then, I can handle it – and then, presumably, having authorized four days of hospitalization with assorted procedures and prescriptions, is now taking its time to consider whether or not to authorize the delivery of nulasta and aranesp – growth factors to maintain my white and red blood cell counts as my body responds to 72 hours of continuous infusions at the hospital. These drugs are supposed to be administered within the first few days after treatment ends, so that the bone marrow can grow new cells to combat infection and who knows what else. There I was, getting trained and drilled in self-injection at the hospital (at the expense of an innocent pad of gauze that was supposed to serve as my fatty midriff) so that I could be discharged and have needles, drugs, syringes and all conveniently delivered to my home, and only bemoaning the apparent fact that my insurance company was evidently not going to spring for the one-time-only, clinic-administered alternative after all. This sounded a bit more to my liking, but I understood that at $6,000 per injection they might balk. I’m a big girl, and I can poke myself with a needle if need be. Operating the various needles and syringes, and getting the correct amount in the syringe, was a bit challenging, but my sister the scientist with the PhD would be there for the first few days to help with that stuff.
Dr. Jahan’s clinical nurse, Evelyn, called when I got home and said I should expect to receive delivery on Tuesday. On Wednesday, when I called to let her know that no delivery had been made, she gave me the direct number of the company in Florida and suggested I give them a call. “Tell them you need them today,” she said. “Tomorrow will actually be okay, but tell them today.” But when nothing had happened by Thursday, and we got a direct line to Jesus, we learned that everything was waiting for authorization by the insurance company.
If this were a song, “waiting for authorization by the insurance company” would be its chorus. Now, as I understand it, these are not some additional medications that have been prescribed based on any specific observation of my condition or response to treatment. I think this is supposed to be part of the treatment. Doxorubicin and ifosfamide kill white and red blood cells, and nulasta and aranesp are given within the first week after chemo (preferably the next day) to help new ones to grow. So, if I understand this properly, the insurance company authorized the infusion of drugs that will lower my blood cell counts, but before authorizing anything to counteract that effect they need……what? They authorized the poison, but not the antidote?
And just how soon do I need these drugs? Well, on Friday, Evelyn locates someone at her clinic who can provide me with the same drugs, that they have for use in a clinical trial. Then, she explains, when the drugs get delivered, we can just return them to the clinical trials. (And if the insurance company doesn’t authorize the drugs? I ask. Well, then at least you’ll get them, she says.)
So maybe there is a place for the modern medical insurance system in the treatment of cancer: a focus for all of one’s negative thoughts and frustrations. If you don’t have these already, there are numerous opportunities to obtain more from a vast store of idiocies. Channel that anger. Death to the insurance companies, those morons!
When I was finally admitted to the hospital for chemotherapy I was determined to be positive and not get bogged down in what I would normally consider a healthy and deserved skepticism about this whole course of treatment, from its theoretical underpinnings to its actual execution. I figured I was going to get the works. Down in radiology, where they installed a port beneath my skin and tube that snakes into my vena cava, they asked if I’d be there for 30 days! No way, say I, I’m here for four. I was assigned to a room with a roommate who, on hearing this news, said she hadn’t known they would admit anyone to 11Long for only four days. She’d been treated for leukemia for over a year, and was awaiting a stem cell transplant from her sister when she “fell into remission” and had to return for seven straight weeks of chemo that she was only then completing. I took a big, humble gulp. Elizabeth was awesome. She showed me around the hall, taught me the password to the hall pantry where ices, juice, popsicles and ice cream are stored, showed me the beautiful solarium and the family room with games, books, and computers, reminded me (repeatedly) to unplug my pole before leaving bedside, and counseled me to take over her side of the room as soon as she was discharged. She had the five big-paneled windows looking over the eucalyptus forest and killer views of the city; my bed faced the nurses’ fluorescent light and was adjacent to the bathroom. But she told me she slept late in the mornings and urged me to open the shades whenever I wanted, so I could gaze at the trees and morning sunlight when I awoke. She had a beautiful bald head and a pole full of plastic jugs of her own. When she was finally discharged and was leaving with her very nice husband, I wished her all the best and lost no time in negotiating with the nursing and housekeeping staff for the bed change. I did not shrink from the use of questionable techniques, such as bribery. I had a nice batch of homemade brownies and was not afraid to use it.
It was much later that evening, long after I was comfortably settled on the penthouse side of the room when my next roommate arrived. Diane was not happy. Like me, she had been scheduled for admission subject to the availability of a bed, but her originally scheduled date was three days earlier and had been repeatedly postponed, including twice earlier that same day. It was late at night now, and I was heading for the bathroom when the night nurse, Katrina, introduced us in her charming Irish lilt: “This is Marcia. She snores. If it bothers you, wake her up.” I had never been introduced to anyone in quite that way, and said so, but gave a hearty hello and trooped off to bed. Into the evening and throughout the next day, over the constant drone of her television set, shards of Diane’s story drifted across the ineffectual curtain separating our beds. She had previously had a tumor removed from her brain that she said was benign, and CT scans that she said were clear, but she was being admitted for chemo anyway. Well, she was being admitted for another CT scan, an MRI, some kind of spinal tap and some other presumably diagnostic procedure, and then chemo, she said. She and her husband had a 17-year-old son with Down syndrome and leukemia, who was getting chemo over at another hospital in the city. She eventually told me most of this herself, although she also told every other person who came into her room, most of whom were apologizing for this or that delay in scheduling the various procedures. She read most of them the riot act. Well, who could blame her. After all that waiting around she spent her first night and half the next day sitting in her bed, talking and watching TV and waiting for something to happen. She could just as well have been at home. She had a few visitors, and her husband was with her much of the time, going over and over everything. At one point I heard her husband’s gruff voice say something to the effect of “You’re going through with this Diane, and that’s all there is to it.” I was horrified, but maybe it wasn’t what it sounded like. They were both kind of gruff, and displayed a sort of sardonic take on things that I recognized as not necessarily being what it seemed, having inclined in that direction myself at times. Still, it was hard to be in a room so filled with anger. I stuck on my headphones and blasted Marvin Gaye into my ears instead.
One night she came and asked me whether I, too, had been through the litany of diagnostic tests. The answer was yes, certainly the MRI and CT scan, although none of this spinal stuff, and over a period of time – I wasn’t admitted to any hospital; I just marched into this or that radiology lab or whatever, took the test, and marched out again. You seem to have an awfully good attitude, she told me. Yeah, I’ve been working on it, I said. It hasn’t always been so good. I told her my whole long story - one that even I am tired of hearing - about how nobody was doing any chemo on me and how I went into surgery against the advice of every doctor involved in my treatment at the time but somehow came out deciding that this is what I should do and now here I am, trying to make the best of it. “So maybe you need to find what it is that will make you want to do this,” I lamely suggested. “Don’t do it for your husband. He seems like a nice man, but this is about you.”
“Oh, I don’t object to the chemo,” said Diane. “I just don’t want all those tests.”
I gulped. “Gee, I don’t know, I think you want the tests. These people know what they’re doing here, and they’re real careful. If they’re going to douse you with poison, you want to be sure they do it right, don’t you?”
Michael came in at that point, and the conversation sort of shifted. He later told me that he thought Diane was getting the words for things mixed up, and maybe was confused as a result of whatever brain thing was going on with her. I hadn’t considered that possibility, but it helped, because none of what she’d said to me really made much sense.
But later, her voice came across the curtain: “I don’t know how old you are, Marcia, but I’m fifty-five, and I don’t see the need for any of this at this point.”
“I’m fifty-one,” I replied in a tiny voice, and that was all. But inside my head I was screaming. ARE YOU OUT OF YOUR MIND? You’re YOUNG! What about your SON?!?
If I were my mother, or if it were my mother in my bed instead of me, I would probably have talked with Diane into the night. We might have become friends, and I would have called to see how she was doing and helped her out with little things along the way. By now, I would know her entire history and I would tell my daughters about her. But I was just trying to get through chemo with my precariously good attitude intact and get the heck out of there. When they let me go, I wished her the best of luck and away I went. Maybe all Diane needed was a good old-fashioned insurance problem.
Oh, and what about my insurance problem? Well, I’ve been out of the hospital for a week now and there’s still been no decision made about the growth factor delivery. It turns out that what Evelyn provided me, and what was requested, was, in fact, two $6000 injections. The alternative, which I’d guess costs somewhat less, is daily injections for ten days after treatment. Either way, the ten days is just about up. My bones are aching as a result of the nulastin, and as a sign that new healthy white blood cells are being produced by my bone marrow, but somewhere, someone is still doing the paperwork. If not for the ability and willingness of UC Med Center to cough up $12,000 worth of drugs when needed, I guess I just wouldn’t have gotten them. Maybe, with a really compromised immune system, we’d get to negotiate over the treatment of those consequences.
Dr. Jahan and Evelyn have determined to resolve this with the insurance company before the next treatment begins in a week or so. I hope the insurance company will at least pay to replace what was borrowed, even if I have to settle for daily injections in the future.
posted by HoJo at 1:46 PM
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