2. I survived the AIDS epidemic, while so many of the people I cared about did not. Nearly thirty years ago, my undergraduate roommate--funny, smart, good-looking, young--was the first I knew who died. Rich had gone to San Francisco to join, he thought, the American Conservatory Theater. But they ultimately didn't take him, and to survive he became a male prostitute. I visited him once there in perhaps the most depressing trip I ever took. Rich lived in a fleabag hotel in the Tenderloin. The rooms had single, shadeless bulbs hanging from the ceiling. There was one toilet in the hallway on each floor. I peed in the sink in my room at night because I was afraid to go into the corridor. Rich and I barely saw each other, since he plied his trade at night and slept during the day. I never saw him again. And there was Ken, whom I took to Paris for the last summer of his life. And Jacques, who ran a Nicolas wine shop in Paris. How many afternoons I spent there--tasting wine and even selling a few bottles. We could always tell Americans when they entered, not only from their tennis shoes and shorts, but also from their nervous air of intimidation. "Can I help you," I'd ask in English, and we'd watch their attitude change in gratitude. When I came back to Paris one time, Jacques' partner said that he would be so happy to see me, that he'd been, for some reason, depressed. When Jacques and I met for dinner A la biche aux bois, one of my favorite restaurants in Paris, I knew instantly from his gaunt appearance what was wrong. And the beautiful Gustavo--one year a gorgeous model in Paris, the next wasting away in his hospital bed. And too many more.
It wasn't just AIDS, but other early deaths. If you spend 39 years in one institution as I have at Washburn, you see a lot of deaths, all too many of them of friends and colleagues and spouses who died before "their time." And not all the deaths were natural; I seem to have known more suicides than is probable--from one of my eighth grade teachers through students and colleagues till last summer, the summer of what QE2 would call another "annus horribilis," when two friends committed suicide: one a friend of forty years, female, American, rich, once very beautiful, a long, slow, but inexorable self-destruction fueled by bottles and cases and years of what she always called the bubbly; the other a friend of 20 years, male, French, once cute, also a slow self-destruction, this one capped by one definitive act.
When I taught American literature, we often read a story by Theodore Dreiser called "Free." It worked well as a counterpoint to Kate Chopin's "The Story of An Hour." In both, the main character is married to someone he or she does not love, and when that person dies (or is reported to have died), the main character feels momentarily free. Unlike Chopin's story, Dreiser's is long and overly explicit about the main character's motives. He's a good man and a faithful and caring husband, but he doesn't love his wife (and Dreiser is none-too-subtle about her less than lovable characteristics). When she dies, he feels guilty, but, for a moment, free. And then he realizes that he is fifty and that fifty is old. He may be free at last, but his life his behind him. The students regularly had two reactions: they sympathized with Chopin's female protagonist, but not with Dreiser's male. And they were totally baffled by his feeling of being old at fifty. No matter that I explained that at the time the story was written, the average life expectancy for American men was fifty, the students couldn't seem to grasp that fifty was once (and only 100 years ago) considered the end of life. And so I survived actuarial tables, even if they were from other eras.
But it's about more than just survival. I know that I've been very lucky in my life. For 45 years, I taught literature and language--a career that I loved. Randall Jarrell once said that if he wasn't paid by others to teach, he'd pay to do so. I felt that way too, though in the current climate I didn't say that aloud till the last year, since the administration might well have taken me at my word. How lucky to get paid to talk about things that you love! And lucky too in that, purely by serendipity, the Menninger letters were here, and I got to work with a man who was still brilliant (if very cantankerous) in his nineties and finally to produce four books and a monograph, as well as articles on literary subjects more closely related to my own field. I was lucky in that two sisters, whom I never knew, endowed a summer sabbatical fund that enabled me to spend seven or eight summers in Paris. It seems that every fourth year I got restless and took a semester or, more often, a year off--regular sabbaticals alternating with leaves of absence to teach abroad--first in Macedonia, then France, then Bulgaria, and finally Morocco. Those four years were some of the happiest and most interesting of my life. I learned how much I loved languages and how language opens the way to immersion in the culture. In the three countries that were poor, there were certainly challenges, especially in the educational system, but the students were eager and often determined. And I've been very lucky in that for the last five years, I've loved and been loved despite what began as a very long-distance relationship.
I want(ed) to live longer, of course. (The past tense seems depressingly fatalistic; the present tense perhaps naively optimistic.) I wanted many more years on a new page in my life. But even if that's not to be, I do know that I've had a happy and lucky life.
So how am I doing? I can't complain.
Tuesday, January 31, 2012
Saturday, January 28, 2012
And now for something completely different...
Four reasons why I'm not afraid of death (which is not to say that I'm not afraid of dying):
1. "I see dead people." Story City, Iowa, where I grew up, was a town of about 1600 inhabitants, most of them Norwegian and Lutheran. (Unfortunately, I can still recall of the odor of lutefisk from the semi-annual lutefisk and lefse dinners.) In my class which roughly held steady at 33, there was an Anderson, Carlson, Johnson, Knutson, Larson, Matson, Nelson, Olson, Paulson, Peterson, Samson, and Thompson. My best friends were Bobby Knutson and Kathy Johnson. Kathy's cousin, Liz Larson, was the daughter of the owner of the local funeral home. The key word was "home," since the Larsons lived there. It was one of the biggest houses in town, and Kathy and I spent many happy afternoons there.
I still remember the layout of the house. When you entered, there was a formal staircase on the right that led to the second floor. To the left there was a large room, sparsely furnished because when there were funerals in the house, it would be filled with folding chairs for the service. Beyond that to the left was what we'd now call the family room, a smaller room with the TV. Behind the largest room was the dining room, and to the left of that was the kitchen with a second set of stairs leading to the second floor.
There were two rules for us kids: one was that when a funeral was taking place, we had to stay outside. Since most Story Citians had their funeals in one of the three Lutheran churches or the one Methodist church, this proscription wasn't very difficult. The other rule was that the room on the second floor where Liz's father did the actual embalming and other preparations was off limits. I'm sure we must have been tempted to sneak a peek or test whether the door was unlocked, though I don't remember that we ever did so.
But I've omitted one room. If, when you entered, you turned neither to the left nor right, there was in front of you the viewing room. That was where the dead lay so that others could view the body. During all the years that we played in that house, there were often bodies nicely laid out in this room. And as kids we thought nothing of it. It seemed perfectly natural--not an object of fear or even curiosity, except when we might know the person who was lying there. That people died seemed just a part of the way things are.
Nearly thirty years later, I met Kathy again. She was returning to nursing and wanted to work with AIDS patients, this at a time when a diagnosis of AIDS meant almost certain death. Both of us agreed that our experience in the funeral home gave us a healthy perspective on death and its familiarity.
When I told this story to a good friend, she said that it would make a great short story. But my point was the opposite: there was no story there--no tension, no arc, no epiphany, just life in all its fullness and completeness.
Obiter scripta: In thinking about the room upstairs, I think too of Van Wyck Brooks's The Ordeal of Mark Twain, published over 90 years ago. Brooks argues that the endings of Twain's books are almost all flawed and offers a Freudian explanation: they fail because Twain had never successfully resolved his Oedipal complex (hardly a surprising conclusion given the Freudian premise). Brooks sketches the predictable family pattern, and supplies one significant detail: the "datemark" for the Oedipal trauma occurred when Twain was 11 (a perfect age for an Oedipal moment), and his father died. The autopsy was performed on the family's dining room table, and Twain peeked in and got a glimpse of the gruesome procedure. For years, the veracity of Brooks's recounting of that moment seemed to me dubious--just too convenient. But later, when I was editing Dr. Karl Menninger's letters, I came across one in which he's offering advice to a young physician. Menninger tells him that he'll do autopsies in the home and that he should always hang his jacket on the doorknob because family members won't be able to resist the temptation to look through the keyhole. I should have trusted Brooks more--at least for the facts.
Four reasons why I'm not afraid of death (which is not to say that I'm not afraid of dying):
1. "I see dead people." Story City, Iowa, where I grew up, was a town of about 1600 inhabitants, most of them Norwegian and Lutheran. (Unfortunately, I can still recall of the odor of lutefisk from the semi-annual lutefisk and lefse dinners.) In my class which roughly held steady at 33, there was an Anderson, Carlson, Johnson, Knutson, Larson, Matson, Nelson, Olson, Paulson, Peterson, Samson, and Thompson. My best friends were Bobby Knutson and Kathy Johnson. Kathy's cousin, Liz Larson, was the daughter of the owner of the local funeral home. The key word was "home," since the Larsons lived there. It was one of the biggest houses in town, and Kathy and I spent many happy afternoons there.
I still remember the layout of the house. When you entered, there was a formal staircase on the right that led to the second floor. To the left there was a large room, sparsely furnished because when there were funerals in the house, it would be filled with folding chairs for the service. Beyond that to the left was what we'd now call the family room, a smaller room with the TV. Behind the largest room was the dining room, and to the left of that was the kitchen with a second set of stairs leading to the second floor.
There were two rules for us kids: one was that when a funeral was taking place, we had to stay outside. Since most Story Citians had their funeals in one of the three Lutheran churches or the one Methodist church, this proscription wasn't very difficult. The other rule was that the room on the second floor where Liz's father did the actual embalming and other preparations was off limits. I'm sure we must have been tempted to sneak a peek or test whether the door was unlocked, though I don't remember that we ever did so.
But I've omitted one room. If, when you entered, you turned neither to the left nor right, there was in front of you the viewing room. That was where the dead lay so that others could view the body. During all the years that we played in that house, there were often bodies nicely laid out in this room. And as kids we thought nothing of it. It seemed perfectly natural--not an object of fear or even curiosity, except when we might know the person who was lying there. That people died seemed just a part of the way things are.
Nearly thirty years later, I met Kathy again. She was returning to nursing and wanted to work with AIDS patients, this at a time when a diagnosis of AIDS meant almost certain death. Both of us agreed that our experience in the funeral home gave us a healthy perspective on death and its familiarity.
When I told this story to a good friend, she said that it would make a great short story. But my point was the opposite: there was no story there--no tension, no arc, no epiphany, just life in all its fullness and completeness.
Obiter scripta: In thinking about the room upstairs, I think too of Van Wyck Brooks's The Ordeal of Mark Twain, published over 90 years ago. Brooks argues that the endings of Twain's books are almost all flawed and offers a Freudian explanation: they fail because Twain had never successfully resolved his Oedipal complex (hardly a surprising conclusion given the Freudian premise). Brooks sketches the predictable family pattern, and supplies one significant detail: the "datemark" for the Oedipal trauma occurred when Twain was 11 (a perfect age for an Oedipal moment), and his father died. The autopsy was performed on the family's dining room table, and Twain peeked in and got a glimpse of the gruesome procedure. For years, the veracity of Brooks's recounting of that moment seemed to me dubious--just too convenient. But later, when I was editing Dr. Karl Menninger's letters, I came across one in which he's offering advice to a young physician. Menninger tells him that he'll do autopsies in the home and that he should always hang his jacket on the doorknob because family members won't be able to resist the temptation to look through the keyhole. I should have trusted Brooks more--at least for the facts.
Friday, January 27, 2012
Then:
What had happened so far, as important as it was, addressed the metastasized cancer. Now it was time to focus on the primary kidney cancer. The renal oncologist was Dr. Vanveldhuizen (or Dr. Van, as he's called to avoid too many different pronunciations of his name), a soft-spoken and earnest physician. His office is at the KU Med Center cancer center a few blocks south of the main KU Med campus. Dr. Van explains everything in detail--first to me, then to Mohamed. He is infinitely patient if, despite his clear explanations, I've gotten focused on one detail and lost track of what followed. Although many friends were still urging that I go to Mayo for a second opinion, everything he recommended was exactly what I was finding online and in a book he gave me, "100 Questions and Answers about Kindey Cancer." He inspired confidence, and I felt good about continuing with him. Of course, one consequence of his painstaking attention is that he always runs late. Mohamed and I will be ushered into one of four small rooms to wait for him. Occasionally, he sticks his head in to say hello, shake hands (he has very cold hands), and assure us that he'll be there soon, and then another 45 minutes pass before he finally gets to us. Since by then I've usually had several tests, I'm often tired and a little grumpy.
A cancer center sounds as if it would be the most depressing place imaginable. Instead, the center in KC (as well as the one in Topeka where I underwent radiation) is brightly lit, spacious, and friendly. Dr. Van's physician assistant, Dr. Heins, is warm and funny, and she too inspires an easy confidence. We joke with the nurse and with the scheduler. When Ilka, the scheduler, had a baby, we all waited for word and later looked at pictures of Noah, the new baby. This may seem irrelevant to the larger story, but it's not: going to the cancer center can't exactly be an experience to look forward to, but at least it's not an experience to dread; it's not in and of itself depressing--and that makes an enormous difference.
I suppose the question oncologists must dread most is "what's the prognosis?" But it's question I'm sure every patient asks. Online and in the kidney cancer book, the answer for stage four kidney cancer was 10-11 months. Dr. Van answered quietly when I asked, "Nine months to a year." Although I wasn't diagnosed till nine months ago, my cancer had metastasized at least sixteen months ago. I don't feel as if I'm living on borrowed time; chemically extended time, though, is ok with me.
The chemotherapy we decided on is Votrient, which I take once a day orally at a cost of $6,000/month. I feel very lucky to be able to take it orally rather than having to go to a facility for a drip. The most immediate side effect was raising of my blood pressure, so I now take three separate medicines to keep the blood pressure down. Those meds plus reducing the dose of Votrient from 800 to 600 mg. a day seem to have solved that problem. It didn't cause my hair to fall out, but the hair did turn gray. I try to convince myself that it looks "distinguished"--the Anderson Cooper look maybe. More significantly, my body's fighting the cancer, the chemo, and the blood pressure meds cause enormous bouts of fatigue. It's not as if I'd like to take a nap; it's two or three times a day my mind and body just shut down. And I, like most patients on Votrient, have really debilitating diarrhea. And it's not just exhausting, but it's potentially embarrassing. Before I go out, I make sure to have taken Imodium--and then I cross my fingers and hope.
I had 12 sessions of radiation here in Topeka for the scapula and then later 11 sessions on the femur. I was surprised at how quick the treatments and how few the side effects were. The ones on the scapula especially were very effective in reducing pain.
Once a month I go to the cancer center in KC to see Dr. Van or Dr. Heins. On two of the monthly visits I have blood work (so far, so good) and a consultation. I also get a bone-strengthening shot. One shot costs $11,187. One shot! Every three months, in addition to the blood work and shot, I go through the whole battery of tests: full-body x-ray to see whether there are more attacks on the bone and CT scans (which involve drinking two bottles of barium, euphemistically labeled "Creamy Vanilla Smoothie," a ploy that might work if you didn't actually have to taste the stuff). The next full screening is February 3; needless-to-say, I'm apprehensive.
I also get an anti-coagulant shot at home. For the first few months, Mohamed gave me these subcutaneous shots twice a day; now it's down to a stronger shot just once a day. I don't mind shots, and Mohamed gives them easily. (Dr. Van's idea of humor: when I expressed relief at having just one shot a day, even if it was 120 mg. rather than two at 80 mg., Dr. Van said, "Yes, but the needle is much bigger." He chuckled at his own joke; it took me a second or two to realize that it was a joke.) The cost for this is over $3,000/month.
The drugs alone cost $20,000 each month. Medicare helps enormously (at this rate, I move through the "donut hole" with remarkable speed). And I have supplemental insurance, but still my share is significant, and now that the new year has begun I'm back in phase one of Medicare coverage. What if this had struck before I was 65? Or what about those who simply don't have the money for out-of-pocket expenses? The inanity of our current system, the waste of money on the constant TV ads by Big Pharma, and the superficiality of the debates about health care--all are infuriating.
What had happened so far, as important as it was, addressed the metastasized cancer. Now it was time to focus on the primary kidney cancer. The renal oncologist was Dr. Vanveldhuizen (or Dr. Van, as he's called to avoid too many different pronunciations of his name), a soft-spoken and earnest physician. His office is at the KU Med Center cancer center a few blocks south of the main KU Med campus. Dr. Van explains everything in detail--first to me, then to Mohamed. He is infinitely patient if, despite his clear explanations, I've gotten focused on one detail and lost track of what followed. Although many friends were still urging that I go to Mayo for a second opinion, everything he recommended was exactly what I was finding online and in a book he gave me, "100 Questions and Answers about Kindey Cancer." He inspired confidence, and I felt good about continuing with him. Of course, one consequence of his painstaking attention is that he always runs late. Mohamed and I will be ushered into one of four small rooms to wait for him. Occasionally, he sticks his head in to say hello, shake hands (he has very cold hands), and assure us that he'll be there soon, and then another 45 minutes pass before he finally gets to us. Since by then I've usually had several tests, I'm often tired and a little grumpy.
A cancer center sounds as if it would be the most depressing place imaginable. Instead, the center in KC (as well as the one in Topeka where I underwent radiation) is brightly lit, spacious, and friendly. Dr. Van's physician assistant, Dr. Heins, is warm and funny, and she too inspires an easy confidence. We joke with the nurse and with the scheduler. When Ilka, the scheduler, had a baby, we all waited for word and later looked at pictures of Noah, the new baby. This may seem irrelevant to the larger story, but it's not: going to the cancer center can't exactly be an experience to look forward to, but at least it's not an experience to dread; it's not in and of itself depressing--and that makes an enormous difference.
I suppose the question oncologists must dread most is "what's the prognosis?" But it's question I'm sure every patient asks. Online and in the kidney cancer book, the answer for stage four kidney cancer was 10-11 months. Dr. Van answered quietly when I asked, "Nine months to a year." Although I wasn't diagnosed till nine months ago, my cancer had metastasized at least sixteen months ago. I don't feel as if I'm living on borrowed time; chemically extended time, though, is ok with me.
The chemotherapy we decided on is Votrient, which I take once a day orally at a cost of $6,000/month. I feel very lucky to be able to take it orally rather than having to go to a facility for a drip. The most immediate side effect was raising of my blood pressure, so I now take three separate medicines to keep the blood pressure down. Those meds plus reducing the dose of Votrient from 800 to 600 mg. a day seem to have solved that problem. It didn't cause my hair to fall out, but the hair did turn gray. I try to convince myself that it looks "distinguished"--the Anderson Cooper look maybe. More significantly, my body's fighting the cancer, the chemo, and the blood pressure meds cause enormous bouts of fatigue. It's not as if I'd like to take a nap; it's two or three times a day my mind and body just shut down. And I, like most patients on Votrient, have really debilitating diarrhea. And it's not just exhausting, but it's potentially embarrassing. Before I go out, I make sure to have taken Imodium--and then I cross my fingers and hope.
I had 12 sessions of radiation here in Topeka for the scapula and then later 11 sessions on the femur. I was surprised at how quick the treatments and how few the side effects were. The ones on the scapula especially were very effective in reducing pain.
Once a month I go to the cancer center in KC to see Dr. Van or Dr. Heins. On two of the monthly visits I have blood work (so far, so good) and a consultation. I also get a bone-strengthening shot. One shot costs $11,187. One shot! Every three months, in addition to the blood work and shot, I go through the whole battery of tests: full-body x-ray to see whether there are more attacks on the bone and CT scans (which involve drinking two bottles of barium, euphemistically labeled "Creamy Vanilla Smoothie," a ploy that might work if you didn't actually have to taste the stuff). The next full screening is February 3; needless-to-say, I'm apprehensive.
I also get an anti-coagulant shot at home. For the first few months, Mohamed gave me these subcutaneous shots twice a day; now it's down to a stronger shot just once a day. I don't mind shots, and Mohamed gives them easily. (Dr. Van's idea of humor: when I expressed relief at having just one shot a day, even if it was 120 mg. rather than two at 80 mg., Dr. Van said, "Yes, but the needle is much bigger." He chuckled at his own joke; it took me a second or two to realize that it was a joke.) The cost for this is over $3,000/month.
The drugs alone cost $20,000 each month. Medicare helps enormously (at this rate, I move through the "donut hole" with remarkable speed). And I have supplemental insurance, but still my share is significant, and now that the new year has begun I'm back in phase one of Medicare coverage. What if this had struck before I was 65? Or what about those who simply don't have the money for out-of-pocket expenses? The inanity of our current system, the waste of money on the constant TV ads by Big Pharma, and the superficiality of the debates about health care--all are infuriating.
Wednesday, January 25, 2012
Then.
Sunday, the day before I entered the Med Center for surgery on my femur, Mohamed (my partner) asked me whether I was frightened. I said no, which was true, but which was also incredibly naive. I really had no idea what was to follow. On Monday, Dr. Templeton, the orthopedic oncologist, scheduled an embolization (I had to look it up). Evidently, there are so many blood vessels in the area of the hip and the surgery was so complicated that it was necessary to cauterize vessels to reduce the amount of possible bleeding. Dr. Templeton, who is, I think, a wonderful surgeon, is also often blunter than I would like: "We don't have to do it," she said, "but I doubt if you'll survive the operation if we don't." After the embolization, there was a day of recovery before the surgery. Of course, I couldn't eat before the operation, which kept getting moved to later and later in the day as my stomach and I both growled. It started about 4 p.m. and was done by 7. The top half of my femur and the ball part of the ball-and-socket joint with the pelvis are now titanium and plastic. The titanium extends through the center of the bottom part of the femur.
In addition to the success of the surgery, I was lucky in many ways. First, I had the constant support and advocacy of Mohamed, who spent eight nights sleeping in my room, going out for food (hospital food has improved over the years, but Gordon Ramsey hasn't yet visited the hospital kitchen), changing dressings, cleaning bedpans (the nurses were very happy to let him help), and providing unending support and affection. Despite the stereotype that Kansas often has, at no time in any of the hospital and cancer center visits in Topeka and Kansas City has Mohamed been treated with anything but respect. When I entered the hospital and filled out forms, the receptionist asked what his relationship with me was. I said "partner"; she wrote down "life partner." The doctors include him in every discussion; the nurses brought him a comfortable (or at least it looked comfortable from my vantage point) chair for him to sleep in. I was lucky too to have many friends in KC. Sometimes I'd complained about how many of my friends had moved to KC from Topeka, but now it was a pleasure to have constant visitors. It might not have been exactly a party atmosphere in the room, but there was nothing lachrymose or lugubrious (or any other polysyllabic L-word) about it.
The least happy part of recovery was the abduction brace that I had to wear for the next 46 days (all of which I counted down). There was a large, hard plastic band (perhas a foot in width) that wrapped all the way around my chest, another around my right thigh, and a metal rod joining them and preventing my right leg from turning in (to say nothing of my bending at the waist). I had to wear this 24 hours a day, 7 days a week; I couldn't even take it off to shower. Until it was adjusted, a process that took two or three days, the hard edges cut into my flesh or stuck to it and pulled it off. "One size fits all," said Dr. Templeton breezily, "which means that it fits no one." After three attempts to shave it and round the edges and pad it, the brace finally didn't actually hurt, but it certainly inhibited movement.
I had brief physical and occupational therapy sessions every day and slowly learned to sit up, then to walk a few steps, and then to climb up one step. I got an oversized walker (the abduction brace was too wide for a regular walker) and an oversized wheelchair. After nine days, I was ready to leave the hospital. Because at home there is no bathroom or bedroom on the first floor, the hospital staff thought a rehab center should be the next step, but I was eager to be home, so that was where I went. I rode to Topeka, wriggling into the back of an SUV and staring at the ceiling and the gray skies outside. When we got home, there was, luckily, a large group of friends waiting at the house. This was good because getting me inside wasn't easy. The back entrance has no steps, but it had been raining steadily and the yard was too soggy to support the heavy and awkward wheelchair. The steps from the garage were fewer, but the door was too narrow. Finally, four friends just hoisted the chair and squeezed me up the front steps and through the front door, a few of them, I'm sure, scraping their knuckles. They also brought a mattress and springs down from upstairs, and we (well, they) rearranged the furniture in the TV room so I had a place to crash. So I was home at last--with a bed, a bulky wheelchair, a walker, and a commode. I could stand with difficulty and take a few steps from one place to another. Everyone had some wine in celebration, and the recovery began.
Now:
One of my friends, an American who lives and works in Paris, called yesterday to tease me (gently--he's a wonderful and generous person) for blogging about doing laundry. But the quotidian is the reality. I read a lot of course, and I watch too much bad TV. I sleep a lot and enjoy all the friends who come to visit (and, in good Midwestern fashion, often bring delicious food) and excursions out for lunch and dinner. Trips to KC for medical appointments are usually combined with lunches with a great friend there. But all of that is often exhausting, so changing the bed and descending to the basement to do the laundry--these seem important as minor marks of independence.
Last night I watched the State of the Union address. Mohamed always teases me (hey--what's with the mocking of a sick guy?) because even though I have never cried throughout the ordeal, neither the physical or emotional parts, he'll look over and see tears running down my face while I watch some sappy or sentimental news story on TV. He bet me I couldn't go 15 minutes into the speech without shedding tears. I assured him that he was wrong, and then before the speech even began, Gabrielle Giffords came in, and, hoping in vain he wouldn't notice, I had wet and salty cheeks. As disappointed as those of us on the left sometimes are with President Obama, the contrast between him and the inane and hateful Republican debates was impressive. One of the overlooked aspects of Romney's tax returns yesterday was the contrast with Gingrich. Those of us who have spent much or all of our lives in academia have certainly encountered a number of Newts: cocksure blowhards, though Newt is more mean-spirited than most. In the pie charts yesterday that compared income, charity, and taxes of Obama, Newt, and Romney, I noticed the teeny sliver of income that Newt gave to charity. Tiffany's vs. tithing--I'll be that's a dilemma that never crossed Newt's mind.
Sunday, the day before I entered the Med Center for surgery on my femur, Mohamed (my partner) asked me whether I was frightened. I said no, which was true, but which was also incredibly naive. I really had no idea what was to follow. On Monday, Dr. Templeton, the orthopedic oncologist, scheduled an embolization (I had to look it up). Evidently, there are so many blood vessels in the area of the hip and the surgery was so complicated that it was necessary to cauterize vessels to reduce the amount of possible bleeding. Dr. Templeton, who is, I think, a wonderful surgeon, is also often blunter than I would like: "We don't have to do it," she said, "but I doubt if you'll survive the operation if we don't." After the embolization, there was a day of recovery before the surgery. Of course, I couldn't eat before the operation, which kept getting moved to later and later in the day as my stomach and I both growled. It started about 4 p.m. and was done by 7. The top half of my femur and the ball part of the ball-and-socket joint with the pelvis are now titanium and plastic. The titanium extends through the center of the bottom part of the femur.
In addition to the success of the surgery, I was lucky in many ways. First, I had the constant support and advocacy of Mohamed, who spent eight nights sleeping in my room, going out for food (hospital food has improved over the years, but Gordon Ramsey hasn't yet visited the hospital kitchen), changing dressings, cleaning bedpans (the nurses were very happy to let him help), and providing unending support and affection. Despite the stereotype that Kansas often has, at no time in any of the hospital and cancer center visits in Topeka and Kansas City has Mohamed been treated with anything but respect. When I entered the hospital and filled out forms, the receptionist asked what his relationship with me was. I said "partner"; she wrote down "life partner." The doctors include him in every discussion; the nurses brought him a comfortable (or at least it looked comfortable from my vantage point) chair for him to sleep in. I was lucky too to have many friends in KC. Sometimes I'd complained about how many of my friends had moved to KC from Topeka, but now it was a pleasure to have constant visitors. It might not have been exactly a party atmosphere in the room, but there was nothing lachrymose or lugubrious (or any other polysyllabic L-word) about it.
The least happy part of recovery was the abduction brace that I had to wear for the next 46 days (all of which I counted down). There was a large, hard plastic band (perhas a foot in width) that wrapped all the way around my chest, another around my right thigh, and a metal rod joining them and preventing my right leg from turning in (to say nothing of my bending at the waist). I had to wear this 24 hours a day, 7 days a week; I couldn't even take it off to shower. Until it was adjusted, a process that took two or three days, the hard edges cut into my flesh or stuck to it and pulled it off. "One size fits all," said Dr. Templeton breezily, "which means that it fits no one." After three attempts to shave it and round the edges and pad it, the brace finally didn't actually hurt, but it certainly inhibited movement.
I had brief physical and occupational therapy sessions every day and slowly learned to sit up, then to walk a few steps, and then to climb up one step. I got an oversized walker (the abduction brace was too wide for a regular walker) and an oversized wheelchair. After nine days, I was ready to leave the hospital. Because at home there is no bathroom or bedroom on the first floor, the hospital staff thought a rehab center should be the next step, but I was eager to be home, so that was where I went. I rode to Topeka, wriggling into the back of an SUV and staring at the ceiling and the gray skies outside. When we got home, there was, luckily, a large group of friends waiting at the house. This was good because getting me inside wasn't easy. The back entrance has no steps, but it had been raining steadily and the yard was too soggy to support the heavy and awkward wheelchair. The steps from the garage were fewer, but the door was too narrow. Finally, four friends just hoisted the chair and squeezed me up the front steps and through the front door, a few of them, I'm sure, scraping their knuckles. They also brought a mattress and springs down from upstairs, and we (well, they) rearranged the furniture in the TV room so I had a place to crash. So I was home at last--with a bed, a bulky wheelchair, a walker, and a commode. I could stand with difficulty and take a few steps from one place to another. Everyone had some wine in celebration, and the recovery began.
Now:
One of my friends, an American who lives and works in Paris, called yesterday to tease me (gently--he's a wonderful and generous person) for blogging about doing laundry. But the quotidian is the reality. I read a lot of course, and I watch too much bad TV. I sleep a lot and enjoy all the friends who come to visit (and, in good Midwestern fashion, often bring delicious food) and excursions out for lunch and dinner. Trips to KC for medical appointments are usually combined with lunches with a great friend there. But all of that is often exhausting, so changing the bed and descending to the basement to do the laundry--these seem important as minor marks of independence.
Last night I watched the State of the Union address. Mohamed always teases me (hey--what's with the mocking of a sick guy?) because even though I have never cried throughout the ordeal, neither the physical or emotional parts, he'll look over and see tears running down my face while I watch some sappy or sentimental news story on TV. He bet me I couldn't go 15 minutes into the speech without shedding tears. I assured him that he was wrong, and then before the speech even began, Gabrielle Giffords came in, and, hoping in vain he wouldn't notice, I had wet and salty cheeks. As disappointed as those of us on the left sometimes are with President Obama, the contrast between him and the inane and hateful Republican debates was impressive. One of the overlooked aspects of Romney's tax returns yesterday was the contrast with Gingrich. Those of us who have spent much or all of our lives in academia have certainly encountered a number of Newts: cocksure blowhards, though Newt is more mean-spirited than most. In the pie charts yesterday that compared income, charity, and taxes of Obama, Newt, and Romney, I noticed the teeny sliver of income that Newt gave to charity. Tiffany's vs. tithing--I'll be that's a dilemma that never crossed Newt's mind.
Tuesday, January 24, 2012
Then:
In October 2010, I began to have pains in my left shoulder (and I'm left-handed). I couldn't lift things, and extending my arm was impossible. After having retired as professor and chair of the English department, I was still teaching as an adjunct, but I couldn't even lift my arm high enough to write on the board. My partner and I were considering moving to Florida. We'd made three trips there to look at houses and had a fourth scheduled. In preparing to put our house up for sale, we'd done renovations, and I assumed that in moving furniture, I'd pulled a muscle. But when the pain didn't go away, I went to my GP, who did an x-ray, saw nothing unusual, and suggested that I go for physical therapy. He sent me to a place where his brother worked as an osteopath, but didn't take Medicare patients, while his partner, an M.D., did. After the first session, I wasn't impressed and called several other facilities, but each said it would be about a month before anyone could see me. Even when I said that I was in pain, the response was still the same, so I settled for the first facility. The doctor there did an ultrasound and said I had a torn rotator cuff; for a month or so, I had a cortisone shot and went for therapy, but nothing seemed to help. The doctor did another ultrasound and said it was bursitis, so there was more cortisone and more therapy, all with the same results: none. Finally, in April, six months after I had first seen a doctor, he said that perhaps he was overlooking something and I should have an MRI.
I went for the MRI, not thinking that it might be anything serious. The next day, as I was walking alone in a virtually empty corridor at my university, my cell rang. The results were in, and the doctor was very somber: I had a tumor on the left scapula, which had been severely damaged. Even though he said 'tumor' and 'cancer' and even though I taught my next class in a state of shock, I still thought that since there hadn't been a biopsy, the diagnosis wasn't certain. Between then and mid-May, my GP was evidently searching for the right oncologist at KU Med Center in Kansas City. At no time did I actually talk to my primary doctor, despite his being a friend--not a close one perhaps, but more than acquaintance. No matter how often I called or asked to speak to the doctor, I never got beyond his nurse or scheduler.
Finally, I got to see an orthopedic oncologist at the Med Center. A series of x-rays showed, in addition to the damage to the scapula, a quarter-sized spot where the right femur had been eaten away. Although many friends were urging me to go to Mayo or M. D. Anderson for a second opinion, it was imperative that the femur be replaced immediately. The oncologist was amazed that it hadn't already fractured and that I wasn't in any pain. On the Saturday morning between the x-rays and the scheduled surgery, the oncologist called me at home with the results of the CT scans I'd also undergone. What we had thought was bone cancer was really kidney cancer, which had metastasized to several bones. "That's not good news," I said. And indeed it wasn't.
Now:
Yesterday I had more energy than usual and did three loads of laundry, which involves going up and down stairs, not painful, but not smooth. I had gone 48 hours without Imodium and without frequent trips to the john. That qualifies as a good day. I watched as much of the 212th Republican debate as I could stand. What a frightening group of four is still left! By then, however, my G-I tract had begun to rebel, and the next several hours involved several trips to the bathroom. Still, I managed a good night's sleep.
In October 2010, I began to have pains in my left shoulder (and I'm left-handed). I couldn't lift things, and extending my arm was impossible. After having retired as professor and chair of the English department, I was still teaching as an adjunct, but I couldn't even lift my arm high enough to write on the board. My partner and I were considering moving to Florida. We'd made three trips there to look at houses and had a fourth scheduled. In preparing to put our house up for sale, we'd done renovations, and I assumed that in moving furniture, I'd pulled a muscle. But when the pain didn't go away, I went to my GP, who did an x-ray, saw nothing unusual, and suggested that I go for physical therapy. He sent me to a place where his brother worked as an osteopath, but didn't take Medicare patients, while his partner, an M.D., did. After the first session, I wasn't impressed and called several other facilities, but each said it would be about a month before anyone could see me. Even when I said that I was in pain, the response was still the same, so I settled for the first facility. The doctor there did an ultrasound and said I had a torn rotator cuff; for a month or so, I had a cortisone shot and went for therapy, but nothing seemed to help. The doctor did another ultrasound and said it was bursitis, so there was more cortisone and more therapy, all with the same results: none. Finally, in April, six months after I had first seen a doctor, he said that perhaps he was overlooking something and I should have an MRI.
I went for the MRI, not thinking that it might be anything serious. The next day, as I was walking alone in a virtually empty corridor at my university, my cell rang. The results were in, and the doctor was very somber: I had a tumor on the left scapula, which had been severely damaged. Even though he said 'tumor' and 'cancer' and even though I taught my next class in a state of shock, I still thought that since there hadn't been a biopsy, the diagnosis wasn't certain. Between then and mid-May, my GP was evidently searching for the right oncologist at KU Med Center in Kansas City. At no time did I actually talk to my primary doctor, despite his being a friend--not a close one perhaps, but more than acquaintance. No matter how often I called or asked to speak to the doctor, I never got beyond his nurse or scheduler.
Finally, I got to see an orthopedic oncologist at the Med Center. A series of x-rays showed, in addition to the damage to the scapula, a quarter-sized spot where the right femur had been eaten away. Although many friends were urging me to go to Mayo or M. D. Anderson for a second opinion, it was imperative that the femur be replaced immediately. The oncologist was amazed that it hadn't already fractured and that I wasn't in any pain. On the Saturday morning between the x-rays and the scheduled surgery, the oncologist called me at home with the results of the CT scans I'd also undergone. What we had thought was bone cancer was really kidney cancer, which had metastasized to several bones. "That's not good news," I said. And indeed it wasn't.
Now:
Yesterday I had more energy than usual and did three loads of laundry, which involves going up and down stairs, not painful, but not smooth. I had gone 48 hours without Imodium and without frequent trips to the john. That qualifies as a good day. I watched as much of the 212th Republican debate as I could stand. What a frightening group of four is still left! By then, however, my G-I tract had begun to rebel, and the next several hours involved several trips to the bathroom. Still, I managed a good night's sleep.
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