One of the first of these blog entries was about things not to say to a person living with cancer. (I'm just going to use PLWC after this, an abbreviation [not an acronym, he said fussily] similar to one used for People Living with AIDS. Somehow it sounds cleaner than the alternatives.) The examples in the earlier blog were egregious (my dentist's "Do we even need to make another appointment?") and meant to have a sort of black humor to them. Today I'm going to do a second installment of well-intentioned but infelicitous comments that friends have made over the last two years. I'm a little reluctant to do this because someone may recognize him- or herself. I know that my friends care about me and are sincere in their concern. We all say things that aren't as happily phrased as they might be.
Don't say nothing. I don't mean this for people I see regularly, but when I meet friends I haven't seen for some time and they don't ask about the cancer, I'm always rather baffled. My conclusion is usually that they feel embarrassed or don't know what to say. But saying something as simple as "How ya doing?" is better than saying nothing. And then take your cue from how the PLWC responds: if there's a one sentence, "I'm doing okay, thanks," that probably means that the PLWC would rather not continue the discussion. If you get a fuller response, feel free to ask more specific questions.
Whatever you say, don't play Ann Curry (it didn't work all that well for her): the furrowed brow, the tremulous, halting voice, the leaning forward. I know you're sincere and that you're honestly concerned; you're my friend after all. But this attitude too often comes across as pitying.
Matter-of-fact is good. I can't speak for all PLWC, but I'm perfectly happy to talk about the results of the latest tests, possible alternative treatments, my current state of mind; if not, I wouldn't be doing the blog. And the best tone, for me at least, is factual and relatively neutral. Don't dwell on those things that haven't changed. Prolific pooping is a persistent problem. Nausea, cramps, and loss of appetite are less frequent, but common. But nothing has changed over the last 22 months, and there's really no point in long discussions. There's nothing new to say, so let's just pass over the subject.
Don't be falsely cheerful: "Oh, you'll be back in Paris is no time." No, I won't. "I know exactly what you're feeling. [No, you don't.] I don't have as much energy as I used to; it's just getting older. [No, it's not.] Of course, I don't have cancer so it's probably more severe with you. [Indeed.]" It comes across as dismissive.
I seem to have done a poor job of describing what the fatigue is like; my metaphors of a "black curtain" or a "black wave" haven't done the job. I need a novelist's help here. Several people have said, "Why are you so worried about sleeping a lot. I love a long nap." What happens isn't a leisurely 'nap.' I know that every morning, I'll have a burst of energy. I write the blog and some e-mails after I take the chemo. An hour later, I can eat something. But suddenly, three to four hours later, the black curtain descends. I'll go upstairs to take a shower, but I literally don't have the energy to pass the bed. I fall immediately asleep and am out of it for an hour. Waking up is an ordeal, but I finally manage to shower and put on clean clothes. By then, it's time for lunch and my daily dose of "The Bold and the Beautiful" (cancer doesn't necessarily give you deepened taste). And then suddenly, I can't stay awake any longer. I feel guilty because it's been only a couple of hours since I woke up. I stagger up the stairs, always optimistically carrying my Kindle or a New Yorker, but in 22 months, I've never read a single page. It's as if I pass out, and this time it's at least a two-hour sleep. That's a big chunk of the day given over to sleep. It comes on all at once, and there's no resisting it. There's usually one more shorter sleep when I prop a pillow against Mohamed and stretch out on the couch. That one might qualify as a 'nap.'
After I did the first entry of what not to say, someone e-mailed me to say that what I needed was what to say. That's harder, but I'll work on it.
Monday, April 29, 2013
Friday, April 26, 2013
After one sunny day, it's gray and rainy again today. But the meteorologists are promising 80ºF (27ºC) by Sunday. So maybe spring is really on the way.
My Tuesday-Friday morning routine starts with an hour of sanity as I watch "The Daily Show" and "The Colbert Report," which I've recorded (I orginally typed 'taped,' but that would be showing my age) from the night before. On "The Daily Show," Al Madrigal has done a brilliant three-part series on the gun control laws that Australia passed after a 1996 gun massacre there. Although Australia had the same wild-West mentality as the U.S., although the rhetoric of the debate sounded similar to that we hear in the U.S., although some pro-gun control legislator did indeed lose their office, Australia passed the sweeping legislation in three months. Since then, gun-related violence has decreased dramatically, the number of suicides by firearms has decreased by 80% (what goes virtually unsaid in our debate is that 60% of gun-related deaths in the U.S. are suicides, while "only" 40% are murders), and there have been no mass shootings. The Aussies haven't lost their liberties; hunters and target shooters may still own registered guns, though not semi-automatic ones. Meanwhile in America, despite the handwringing, tears, and memorials, nothing has been--or will be--done. The House is, of course, hopeless, but even the Senate couldn't muster 60 votes. Max Baucus, one of the four Democrats to vote against the severely weakened background check, was supposed to have done so because he feared for repraisals in the next election. But now he's announced he's not running for a seventh term, so he doesn't even have that excuse. Like almost everyone else who retires from Congress, I predict he'll get a lobbying job on K Street or join or start a "think tank." How many of these foundations are there? And who funds them? They proliferate like rabbits, publish predictable papers, and are an endless source of talking heads for the 24-hour a day news cycle. And they pay themselves lavish salaries for this sinecure.
Meanwhile, if I turn on the network news, there's nothing but coverage of the opening of the George W. Bush Libarry. One room, which a newspaper called the "most frustrating exhibit in the museum," is called "Decision Point." It is, of course, interactive. You can read a question like "Should we have invaded Iraq?" and then press 'yes' or 'no.' If you choose 'no,' a video of Bush appears to tell you that you are wrong and that it was necessary to get rid of Saddam. Now that's true interactivity.
Last night there was a nice break in the routine as the English department (and spouses/plus ones) had a dinner for this year's three retirees. Among them, they have a combined total of over 100 years at Washburn. One, Jim, came to Washburn in 1963! He may have set a record for 50 years of teaching and service. In all the time we served together, we never had a disagreement. And Jim was beloved by fifty years of students. I gave the retirement tribute for Virginia, who has taught at Washburn for 39 years. In addition to being my friend and colleague, Virginia and I worked for over a decade on four books and a monograph that began with editing the letters of perhaps the 20th century's preeminent American psychoanalyst, Dr. Karl Menninger. Unfortunately, my stomach had decided not to cooperate, and I thought it was safer to give the tribute sitting down. I tried to go for humorous anecdotes with just a touch of the heartfelt at the end. One of the remarkable things about the English department is that despite our numerous eccentricities, we have almost always all gotten along very well, and the evening was convivial and lively. The general good humor has always helped us when we interviewed candidates. Despite the pathetic salaries and the Topeka location, we've always managed to have an excellent choice of candidates. As one who interviewed while I was chair said with some amazement, "You people actually seem to like each other."
My Tuesday-Friday morning routine starts with an hour of sanity as I watch "The Daily Show" and "The Colbert Report," which I've recorded (I orginally typed 'taped,' but that would be showing my age) from the night before. On "The Daily Show," Al Madrigal has done a brilliant three-part series on the gun control laws that Australia passed after a 1996 gun massacre there. Although Australia had the same wild-West mentality as the U.S., although the rhetoric of the debate sounded similar to that we hear in the U.S., although some pro-gun control legislator did indeed lose their office, Australia passed the sweeping legislation in three months. Since then, gun-related violence has decreased dramatically, the number of suicides by firearms has decreased by 80% (what goes virtually unsaid in our debate is that 60% of gun-related deaths in the U.S. are suicides, while "only" 40% are murders), and there have been no mass shootings. The Aussies haven't lost their liberties; hunters and target shooters may still own registered guns, though not semi-automatic ones. Meanwhile in America, despite the handwringing, tears, and memorials, nothing has been--or will be--done. The House is, of course, hopeless, but even the Senate couldn't muster 60 votes. Max Baucus, one of the four Democrats to vote against the severely weakened background check, was supposed to have done so because he feared for repraisals in the next election. But now he's announced he's not running for a seventh term, so he doesn't even have that excuse. Like almost everyone else who retires from Congress, I predict he'll get a lobbying job on K Street or join or start a "think tank." How many of these foundations are there? And who funds them? They proliferate like rabbits, publish predictable papers, and are an endless source of talking heads for the 24-hour a day news cycle. And they pay themselves lavish salaries for this sinecure.
Meanwhile, if I turn on the network news, there's nothing but coverage of the opening of the George W. Bush Libarry. One room, which a newspaper called the "most frustrating exhibit in the museum," is called "Decision Point." It is, of course, interactive. You can read a question like "Should we have invaded Iraq?" and then press 'yes' or 'no.' If you choose 'no,' a video of Bush appears to tell you that you are wrong and that it was necessary to get rid of Saddam. Now that's true interactivity.
Last night there was a nice break in the routine as the English department (and spouses/plus ones) had a dinner for this year's three retirees. Among them, they have a combined total of over 100 years at Washburn. One, Jim, came to Washburn in 1963! He may have set a record for 50 years of teaching and service. In all the time we served together, we never had a disagreement. And Jim was beloved by fifty years of students. I gave the retirement tribute for Virginia, who has taught at Washburn for 39 years. In addition to being my friend and colleague, Virginia and I worked for over a decade on four books and a monograph that began with editing the letters of perhaps the 20th century's preeminent American psychoanalyst, Dr. Karl Menninger. Unfortunately, my stomach had decided not to cooperate, and I thought it was safer to give the tribute sitting down. I tried to go for humorous anecdotes with just a touch of the heartfelt at the end. One of the remarkable things about the English department is that despite our numerous eccentricities, we have almost always all gotten along very well, and the evening was convivial and lively. The general good humor has always helped us when we interviewed candidates. Despite the pathetic salaries and the Topeka location, we've always managed to have an excellent choice of candidates. As one who interviewed while I was chair said with some amazement, "You people actually seem to like each other."
Tuesday, April 23, 2013
After last Friday's good test results, I should be feeling a sense of relief and relaxtion. Instead, neither Mohamed nor I have been on our game for the last couple of weeks. Last week, when I skipped writing an entry, it was because I didn't have the energy or enthusiasm to write about anything: nothing in particular angered or amused me, nothing in the daily routine had changed. In fact, even in the days leading up to the tests, I wasn't particularly involved in what was about to happen. In e-mails, I sometimes wrote that I felt more apprehension than usual, and while I guess that was true (more tests equal more chances for something ugly to show up), I really didn't spend much time at all thinking about the tests. In part, it was just that the tests have been so regular, so much a part of the new normal, that it was hard to work up much by way of expectations. Even the day of the tests, after they were completed, rather than worrying about what the results would be, I was more preoccupied with how to fill the time, where to get some good coffee, and how I was going to stay awake until Dr. Van appeared. When we finally got the results, there wasn't a sense of euphoria or even a big sigh of relief. It was more like, ok, the routine resumes, and there are no decisions to be made.
In the days that have followed, instead of feeling energized, I've been lethargic. It's back to the train-train quotidien which is fine, but hardly exciting. In part, I'll blame the weather and a touch of SAD. Although we've had a few sunny days here and there, it's mainly been gray, wet, and chilly. Today's normal high should be 69º; instead we're in the low 30s with a mix of rain, snow, and sleet forecast. The cabin fever continues. In part, the national news is discouraging. The Senate couldn't even pass a pathetically weak bill on background checks for guns despite overwhelming popular support and getting more than a majority of votes of in the Senate--the filibuster again. And it wasn't going to pass the House anyway. The "shameful" failure was drowned out by coverage of the Boston bombings, and even they are becoming politicized: the McCain/Graham duo wants Tsarnaev tried as an "enemy combatant" (or at least to make some political hay in demanding that), and Rand Paul, among others, says that because the brothers were immigrants, we need to slow down on immigration reform.
Meanwhile, Mohamed is having a very hard semester and is deriving not a moment's pleasure from his classes. It's been one giant project after another, all intermingled with quizzes and exams. He's not into it at all. The only consolation is that there are fewer than two weeks of classes left, and then after finals, there's a three-month break. And after that, he needs only fifteen more hours to graduate. But I think he's feeling the confinement of the daily routine even more than I am. It's difficult to watch and to be unable to help. "It'll be ok" or "this too shall pass" aren't really all that helpful.
And I've just had trouble getting my ass in gear. I haven't picked up Infinite Jest in a month now. I started a giant cross-stitch project, but once I'd finished the time-consuming, intricate, but not very interesting border, I've ignored the project, which should now be both more interesting and more difficult. I know that three hours after I take my morning chemo, I'm going to crash for an hour and that shortly after lunch I'm going to crash again for two hours. Those are big chunks of the day that interrupt any momentum I might have achieved.
So, although of course we were pleased with Friday's results, we both need to shake ourselves out of our ruts. Ah, the rain has turned to sleet while I wrote this. That's a cheerful development.
In the days that have followed, instead of feeling energized, I've been lethargic. It's back to the train-train quotidien which is fine, but hardly exciting. In part, I'll blame the weather and a touch of SAD. Although we've had a few sunny days here and there, it's mainly been gray, wet, and chilly. Today's normal high should be 69º; instead we're in the low 30s with a mix of rain, snow, and sleet forecast. The cabin fever continues. In part, the national news is discouraging. The Senate couldn't even pass a pathetically weak bill on background checks for guns despite overwhelming popular support and getting more than a majority of votes of in the Senate--the filibuster again. And it wasn't going to pass the House anyway. The "shameful" failure was drowned out by coverage of the Boston bombings, and even they are becoming politicized: the McCain/Graham duo wants Tsarnaev tried as an "enemy combatant" (or at least to make some political hay in demanding that), and Rand Paul, among others, says that because the brothers were immigrants, we need to slow down on immigration reform.
Meanwhile, Mohamed is having a very hard semester and is deriving not a moment's pleasure from his classes. It's been one giant project after another, all intermingled with quizzes and exams. He's not into it at all. The only consolation is that there are fewer than two weeks of classes left, and then after finals, there's a three-month break. And after that, he needs only fifteen more hours to graduate. But I think he's feeling the confinement of the daily routine even more than I am. It's difficult to watch and to be unable to help. "It'll be ok" or "this too shall pass" aren't really all that helpful.
And I've just had trouble getting my ass in gear. I haven't picked up Infinite Jest in a month now. I started a giant cross-stitch project, but once I'd finished the time-consuming, intricate, but not very interesting border, I've ignored the project, which should now be both more interesting and more difficult. I know that three hours after I take my morning chemo, I'm going to crash for an hour and that shortly after lunch I'm going to crash again for two hours. Those are big chunks of the day that interrupt any momentum I might have achieved.
So, although of course we were pleased with Friday's results, we both need to shake ourselves out of our ruts. Ah, the rain has turned to sleet while I wrote this. That's a cheerful development.
Saturday, April 20, 2013
The news from yesterday's trip to the KU Cancer Center was almost entirely good. We got up at 6 a.m. to literally freezing weather. Spring just will not come. The dogwoods are in bloom, and daffodils and some tulips have raised their heads, though they risk a Frost-like beheading. I could drink water to take my meds, but at 6 a.m. I wanted coffee, which was off-limits. By a few minutes after 7, the dog was fed and had been let out, we were dressed, and the car was warm. It always takes exactly 75 minutes, almost all of it on the Interstate, to reach the Cancer Center.
We signed in and almost immediately I was called for the blood work. I had the same cheerful, but not very competent, middle-aged woman that I had had a couple of times ago. Like the previous time, she praised my standout vein, and then dug around saying she couldn't get the blood to flow. No one else has ever had that problem. When I'm having CT scans, it's necessary to put in a port. The time before, when she finally did get blood, she had put in the wrong size port, so it had to be done all over again when I went for the scans. This time, while I was in the middle of x-rays, a tech came to say that the first phlebotomist hadn't drawn enough blood and then discovered that the port wasn't fully in the vein so once more I had to have a new port put in. It's not painful, but it does seem like a pretty elementary procedure to botch twice.
Dressed in my green gown (they have a new design that wraps around twice so nothing risks exposure) I had twenty x-rays, the most ever--from my skull to my toes. And then I started drinking the two large cups of what they insist is just water in preparation for the CT scans. I've gone from the thick, unpleasant liquid of a couple of years ago to "smoothies" to fruit-flavored, clear liquid, to now just water. I'm not sure I'm completely convinced that there are no additives, because I don't see how it can be useful for contrasts if it's just H20 and because, like the earlier versions, it causes immediate chills. They gave me a warm blanket, but then I sat there for an hour waiting for the scans. The warmth dissipated, and the chills returned. Since I'd been moved to an out-of-the-way nook for the reinsertion of the port, I was pretty sure I had been forgotten, but eventually someone came and I had the scans. The tech wanted to know whether I was part of the Missouri Faulkners who raised hogs and reminisced about the good old days on the hog farm.
Finally, I could put my clothes on, rejoin Mohamed, and head outside for a cigarette. The chilly weather and the effects of the "water" I'd drunk didn't make for a long break. We both had coffee, but couldn't find any sweet snacks. I wanted sugar, but obviously a medical center prefers to encourage more healthful habits.
Our appointment with Dr. Vanveldhuizen was scheduled for noon, but as always, he was running behind, and it was 1 p.m. before we saw Jennifer, the physician assistant. Thirty minutes later, Dr. Van appeared. The blood work was all good, almost everything within the normal range. Almost all of the x-rays were back, and there were no problems with bones. The CT scans showed that the secondary tumors, which are scattered throughout my body, were stable, as they've been for some time. The only glitch is that the primary (kidney) tumor has continued to grow, as it has for the last nine months. But its growth is very slow--nothing dramatic. We had already run through the alternatives. I could switch to a different chemo treatment, but so far the Votrient has been quite effective, there is no guarantee that a different medication would be more effective, and my body would have to readjust to a new set of side effects. Or I could have surgery to remove the kidney, but that operation wouldn't prolong my life and has its own dangers given my compromised immune system. What it might (and I stress the 'might') do is make the complications when the tumor is much enlarged less difficult. As before, given the uncertain results and the failure to make a long-term difference, removal of the kidney doesn't much interest me. So we're leaving well enough alone. Cancer, shmancer, abi gesund.
And then I got my extremely expensive bone-strengthening shot, and we headed home. As I knew I would, I slept for the entire trip, and when we got home, I was more exhausted than ever so slept for another two hours. I did pull myself together later, and Mohamed and I went out for dinner. I have to say how important Mohamed is not only in day-to-day support, but also on a day like yesterday. Not only does he drive (I certainly couldn't have driven home), but he's patiently there in what must be for him an even more boring day-long wait. And he's there for the consultation, asking questions and listening attentively (by that time, my mind isn't working at full capacity). Going through this alone would be a quite different and much more difficult experience. With Mohamed, it's much less stressful. Shukran, as they say.
We signed in and almost immediately I was called for the blood work. I had the same cheerful, but not very competent, middle-aged woman that I had had a couple of times ago. Like the previous time, she praised my standout vein, and then dug around saying she couldn't get the blood to flow. No one else has ever had that problem. When I'm having CT scans, it's necessary to put in a port. The time before, when she finally did get blood, she had put in the wrong size port, so it had to be done all over again when I went for the scans. This time, while I was in the middle of x-rays, a tech came to say that the first phlebotomist hadn't drawn enough blood and then discovered that the port wasn't fully in the vein so once more I had to have a new port put in. It's not painful, but it does seem like a pretty elementary procedure to botch twice.
Dressed in my green gown (they have a new design that wraps around twice so nothing risks exposure) I had twenty x-rays, the most ever--from my skull to my toes. And then I started drinking the two large cups of what they insist is just water in preparation for the CT scans. I've gone from the thick, unpleasant liquid of a couple of years ago to "smoothies" to fruit-flavored, clear liquid, to now just water. I'm not sure I'm completely convinced that there are no additives, because I don't see how it can be useful for contrasts if it's just H20 and because, like the earlier versions, it causes immediate chills. They gave me a warm blanket, but then I sat there for an hour waiting for the scans. The warmth dissipated, and the chills returned. Since I'd been moved to an out-of-the-way nook for the reinsertion of the port, I was pretty sure I had been forgotten, but eventually someone came and I had the scans. The tech wanted to know whether I was part of the Missouri Faulkners who raised hogs and reminisced about the good old days on the hog farm.
Finally, I could put my clothes on, rejoin Mohamed, and head outside for a cigarette. The chilly weather and the effects of the "water" I'd drunk didn't make for a long break. We both had coffee, but couldn't find any sweet snacks. I wanted sugar, but obviously a medical center prefers to encourage more healthful habits.
Our appointment with Dr. Vanveldhuizen was scheduled for noon, but as always, he was running behind, and it was 1 p.m. before we saw Jennifer, the physician assistant. Thirty minutes later, Dr. Van appeared. The blood work was all good, almost everything within the normal range. Almost all of the x-rays were back, and there were no problems with bones. The CT scans showed that the secondary tumors, which are scattered throughout my body, were stable, as they've been for some time. The only glitch is that the primary (kidney) tumor has continued to grow, as it has for the last nine months. But its growth is very slow--nothing dramatic. We had already run through the alternatives. I could switch to a different chemo treatment, but so far the Votrient has been quite effective, there is no guarantee that a different medication would be more effective, and my body would have to readjust to a new set of side effects. Or I could have surgery to remove the kidney, but that operation wouldn't prolong my life and has its own dangers given my compromised immune system. What it might (and I stress the 'might') do is make the complications when the tumor is much enlarged less difficult. As before, given the uncertain results and the failure to make a long-term difference, removal of the kidney doesn't much interest me. So we're leaving well enough alone. Cancer, shmancer, abi gesund.
And then I got my extremely expensive bone-strengthening shot, and we headed home. As I knew I would, I slept for the entire trip, and when we got home, I was more exhausted than ever so slept for another two hours. I did pull myself together later, and Mohamed and I went out for dinner. I have to say how important Mohamed is not only in day-to-day support, but also on a day like yesterday. Not only does he drive (I certainly couldn't have driven home), but he's patiently there in what must be for him an even more boring day-long wait. And he's there for the consultation, asking questions and listening attentively (by that time, my mind isn't working at full capacity). Going through this alone would be a quite different and much more difficult experience. With Mohamed, it's much less stressful. Shukran, as they say.
Wednesday, April 17, 2013
Sunday, April 14, 2013
My Saturday and Sunday mornings have been completely discombobulated. From 7-9, I religiously watched "Up with Chris Hayes," but now Hayes has been given an evening series, and after two weeks of "Best of..." the show has returned with a new host, Steve Kornacki. Yesterday's program wasn't good, and Kornacki, perhaps nervous, didn't show much personality. I'm more encouraged today when the theme so far has been "The Austerity Trap," the prompt for which was Obama's discouraging budget, especially his endorsement of a "chained CPI" to calculate social security benefits. The chained CPI would reduce social security enhancements to seniors, veterans, the disabled. First, social security benefits aren't part of the federal budget; they have their own funding and accounting. More seriously, however, the President's budget buys into what has become the common wisdom since the crash of 2008: that the problem is deficit and debt rather than an anemic economy and a virtual absence of government stimulus (to use a word that is anathema to many) to create jobs. As Keynes long ago pointed, the government needs to spend (and even incur debt) when the economy is struggling; it pays down the debt when the economy is strong. You fix the roof when the sun is shining, not when it's storming.
Ten words/expressions that need to be retired from the English language:
Ten words/expressions that need to be retired from the English language:
- entitlements for social insurance. It was President Reagan who first popularized the word in its current, pejorative sense, and ever since, even Democrats, have used the word for what even Reagan had previously called the "social safety net." In theory, 'entitlement' ought to be neutral, but "to have a sense of entitlement" or "to feel entitled" brings with it an unearned sense of resentment.
- accidental racist. If LL Cool J wanted some publicity for the album he's going to "drop" soon, he's certainly getting it. The song is too silly to merit the attention, but, if we could take it seriously, the premise and the examples are clearly offensive.
- assessment. The bane of modern education, 'assessment' sounds logical enough. But as it's implemented, with its narrow focus on reading and math, its assumption that standardized test scores measure something other than how well one takes standardized tests, its emphasis on conformity and consequent squelching of creativity, its incentives to ignore disadvantaged and disabled students, and its punitive consequences, assessment only narrows what education ought to be.
- rubric. Just reduce everything to a one-size-fits-all numeric scale and grading will suddenly seem uniform and objective. Now that Harvard and MIT (oy!) have collaborated on a software program to grade essays, creative teaching seems even more superfluous than ever.
- thinking outside the box. And where exactly would that be?
- (not) in someone's wheelhouse. Popularized, I guess, by "American Idol," I hear this expression all the time now. Does anyone even know what a wheelhouse is?
- awesome/amazing. These seem to have become the only two positive adjectives that Americans know. Perhaps, though, we're better off than the Brits, who seem to have only 'brilliant' as a compliment.
- anyways. 'Anyway' is bad enough as an all-purpose transition, but adding the -s makes it sound particularly hick-y.
- shut the front door! As a euphemism, this one is inane at every level.
- unconditional love. Is this a synonym for masochism?
Thursday, April 11, 2013
Saturday it will be exactly two years since I first heard the words 'you' and 'cancer' in the same sentence. Just to recap the sequence of events since the beginning of this blog was some time ago: in October of 2010, I began having severe pains in my left shoulder. I went to my primary care physician, someone I thought was also my friend though he hasn't spoken a word to me since that visit, for an x-ray. He found nothing and sent me to a doctor who specialized in physical therapy and who diagnosed a torn rotator cuff. I had cortisone shots and therapy, but the pain didn't decrease. Next he decided it was bursitis, so there was more cortisone and therapy with the same lack of results. Finally in April 2011, after six months of misdiagnosis, he sent me for an MRI. On the 13th of April, having retired the year before but still teaching one class as an adjunct, I was in an empty hallway on the second floor of our building on my way to the restroom when my phone rang. It was the doctor who gave me the results of the MRI: tumors that were destroying the left scapula. I had fifteen minutes to digest this information before my freshman composition class, which I taught without, I think, revealing what was really going on in my mind.
The next month--it seemed never-ending--was spent arranging appointments at KU Med. The assumption at this point was that I had bone cancer, and I underwent full skeletal x-rays which revealed how much of the scapula had been destroyed and of more immediate concern a large hole in my right femur. The orthopedic surgeon was amazed that the femur hadn't shattered and that I hadn't had any pain there. As Mohamed and I were leaving the Med Center on a Friday, the nurse called with some good news: the tumor in the scapula hadn't spread into surrounding tissue. The good news was short lived, however, as Dr. Templeton, the surgeon, called me at home on Saturday morning to say that the CT scans had revealed that it wasn't bone cancer, but kidney cancer which had metastasized throughout my body. "That's not good news" was my intelligent response. Dr. Templeton agreed.
Friends were advising that I go to the Mayo Clinic or to M. D. Anderson for a second opinion, but an operation on the femur was urgent, so I immediately entered KU Med. I remember the day before we left, Mohamed asked me whether I was afraid. Naively I said no. I envisioned something like a hip replacement--temporary discomfort followed by feeling better than before. The first day they did an embolization, which I had to look up online. "We don't have to do it," said Dr. Templeton, "but if we don't, you'll never get off the table." The next day was the operation itself. None of the bone of the upper femur was salvageable, so the top half of my femur is titanium with an extension into the lower half and the ball part of the hip joint is plastic. All of the muscles had to be surgically attached to the titanium. I spent nine days in the Med Center, Mohamed at my side the whole time. I was "fitted" with an abduction brace. "One size fits all," said Dr. Templeton blithely, "which means one size fits no one." It cut into my skin, and the first technician couldn't get it to fit. Finally, after three days, a second technician managed to make it less painful. I wore it 24/7 for the next 46 days, each one of which I counted down. I couldn't shower. I couldn't take it off to sleep. It took a few days to master the seven stairs to the bathrooms in our house. I had an oversized wheelchair (because of the size of the brace), which was difficult to maneuver around the house. I had radiation treatments here in Topeka, first on the hip, then on the shoulder. The latter seem to have been quite effective, and neither had any major side effects.
Luckily, I had great support from friends and colleagues and, of course, Mohamed. Visitors came from France, Hawaii, and elsewhere in the U.S. Even getting me up the stairs in the wheelchair and into the house during a rainstorm became a major ordeal. Meanwhile, my care was given over to Dr. Vanveldhuisen, an oncologist, and the new life began. The prognosis, he said--and everything I read on the Internet confirmed it--was 10-11 months. I started on a daily regimen of chemo, fortunately taken orally. I deal with the side effects every day. They're not pleasant, but then since it's been 2 1/2 years since the cancer had spread, I'm a year and half past my expiration date, so I have nothing to complain about.
Last week, the side effects were worse than usual, so for the third time, I gave myself a four-day break in the chemo. The first two times, I had felt rather smug not opening the Votrient bottle, but since over the last six months the primary tumor had resumed growing (though slowly) I was reluctant this time to take the break. For the first three days, the diarrhea lessened, though to my surprise the fatigue did not. On the fourth day, however, all the side effects resumed, and yesterday, when I started the chemo again, was fairly miserable.
Next Friday, we go back to the Med Center. I'll have bloodwork, CT scans (to see whether the tumors are growing), and, for the first time in nine months, full skeletal x-rays. Even though the secondary tumors have been stable in size, it will be good to know whether they are gnawing away at the bones. Ever since the surgery, I've had constant discomfort in the right hip, but no real pain. And I haven't felt pain in other areas where there are tumors, so I'll hope that's a good sign. I'm not a worrier by nature (as I always say), so I haven't spent much time thinking about next Friday, though when I do, I have to admit that I'm a bit apprehensive. So far, though, so good. And now, since I've been up for over three hours, I feel a crash coming on. Every morning at this time and every afternoon at about 2, I absolutely cannot stay awake. In the afternoon, I crash for at least two hours, often longer. I'm a barrel of fun these days. Living with cancer is boring...until it won't be.
The next month--it seemed never-ending--was spent arranging appointments at KU Med. The assumption at this point was that I had bone cancer, and I underwent full skeletal x-rays which revealed how much of the scapula had been destroyed and of more immediate concern a large hole in my right femur. The orthopedic surgeon was amazed that the femur hadn't shattered and that I hadn't had any pain there. As Mohamed and I were leaving the Med Center on a Friday, the nurse called with some good news: the tumor in the scapula hadn't spread into surrounding tissue. The good news was short lived, however, as Dr. Templeton, the surgeon, called me at home on Saturday morning to say that the CT scans had revealed that it wasn't bone cancer, but kidney cancer which had metastasized throughout my body. "That's not good news" was my intelligent response. Dr. Templeton agreed.
Friends were advising that I go to the Mayo Clinic or to M. D. Anderson for a second opinion, but an operation on the femur was urgent, so I immediately entered KU Med. I remember the day before we left, Mohamed asked me whether I was afraid. Naively I said no. I envisioned something like a hip replacement--temporary discomfort followed by feeling better than before. The first day they did an embolization, which I had to look up online. "We don't have to do it," said Dr. Templeton, "but if we don't, you'll never get off the table." The next day was the operation itself. None of the bone of the upper femur was salvageable, so the top half of my femur is titanium with an extension into the lower half and the ball part of the hip joint is plastic. All of the muscles had to be surgically attached to the titanium. I spent nine days in the Med Center, Mohamed at my side the whole time. I was "fitted" with an abduction brace. "One size fits all," said Dr. Templeton blithely, "which means one size fits no one." It cut into my skin, and the first technician couldn't get it to fit. Finally, after three days, a second technician managed to make it less painful. I wore it 24/7 for the next 46 days, each one of which I counted down. I couldn't shower. I couldn't take it off to sleep. It took a few days to master the seven stairs to the bathrooms in our house. I had an oversized wheelchair (because of the size of the brace), which was difficult to maneuver around the house. I had radiation treatments here in Topeka, first on the hip, then on the shoulder. The latter seem to have been quite effective, and neither had any major side effects.
Luckily, I had great support from friends and colleagues and, of course, Mohamed. Visitors came from France, Hawaii, and elsewhere in the U.S. Even getting me up the stairs in the wheelchair and into the house during a rainstorm became a major ordeal. Meanwhile, my care was given over to Dr. Vanveldhuisen, an oncologist, and the new life began. The prognosis, he said--and everything I read on the Internet confirmed it--was 10-11 months. I started on a daily regimen of chemo, fortunately taken orally. I deal with the side effects every day. They're not pleasant, but then since it's been 2 1/2 years since the cancer had spread, I'm a year and half past my expiration date, so I have nothing to complain about.
Last week, the side effects were worse than usual, so for the third time, I gave myself a four-day break in the chemo. The first two times, I had felt rather smug not opening the Votrient bottle, but since over the last six months the primary tumor had resumed growing (though slowly) I was reluctant this time to take the break. For the first three days, the diarrhea lessened, though to my surprise the fatigue did not. On the fourth day, however, all the side effects resumed, and yesterday, when I started the chemo again, was fairly miserable.
Next Friday, we go back to the Med Center. I'll have bloodwork, CT scans (to see whether the tumors are growing), and, for the first time in nine months, full skeletal x-rays. Even though the secondary tumors have been stable in size, it will be good to know whether they are gnawing away at the bones. Ever since the surgery, I've had constant discomfort in the right hip, but no real pain. And I haven't felt pain in other areas where there are tumors, so I'll hope that's a good sign. I'm not a worrier by nature (as I always say), so I haven't spent much time thinking about next Friday, though when I do, I have to admit that I'm a bit apprehensive. So far, though, so good. And now, since I've been up for over three hours, I feel a crash coming on. Every morning at this time and every afternoon at about 2, I absolutely cannot stay awake. In the afternoon, I crash for at least two hours, often longer. I'm a barrel of fun these days. Living with cancer is boring...until it won't be.
Monday, April 8, 2013
Today's is my 150th entry. It seems just a short time ago that I was marveling at hitting #100, but at the rate of one every third day, it must have been five months ago. I had no idea when I began that I'd be around for so many entries or that I'd have enough to say to produce so many words. I'm approaching 15,000 page views or (who said Americans can't do math?) about 100 views for every page. I'm very grateful for all the regular readers and your comments, both complimentary and critical. In the section of statistics about audience, I can see where the readers are located. I seem to have a regular follower or two in Russia and Germany. Last week, there were two pageviews from Rwanda and one from Bangladesh; I wonder what, as they stumbled across the blog, they made of it. Here's to the next fifty blogs.
Last night on TCM I watched Alfred Hitchcock's Spellbound with Gregory Peck and Ingrid Bergman. It brought back memories that I hadn't thought of in a long time. Virginia Pruitt and I edited three volumes of Dr. Karl Menninger's letters, two of his professional correspondence and one of his brief time (1930-32) as an advice columnist for the Ladies' Home Journal. In the first two volumes, most of the correspondence is quite serious as psychoanalysis found its place in American intellectual and popular thought, but sometimes there were unexpected byways. The Spellbound diversion begins on July 13, 1944, when Joseph Mankiewicz, the famous Hollywood writer, director, and producer, writes a long and alarmed letter to Dr. Karl about the dangerous portrayal of psychoanalysis in the film, which is set in part at a mental hospital. He writes, "The psychoanalysts at the sanitarium are almost without exception maladjusted men--and they spend their time twitting each other about their fallibilies. They take turns in making passes at Bergman, whom they constantly tease as being emotionally and sexually frigid. I think I have rung enough gongs--it's time to get down to the purpose of this letter."
The script was written by Ben Hecht, whom Mankiewicz describes as "glib," and like "every other [David O.] Selznick productionn, [Spellbound] will be heavily exploited and there is every reason to believe that it will be an enormously successful film--which means that it will have an audience of millions of people." Mankiewicz wants Dr. Karl to write Selznick urging that the script be vetted by psychoalanlysts and that changes be made. Dr. Karl does indeed write Selznick, a letter rather obvious in its flattery, suggesting that the APA would be happy to review Hecht's script and make it one that educates the public about the true nature of psychoanalysis. Selznick replies that they were "very careful about everything in connection with the film," that Ben Hecht probably "knows more about psychiatry than any other writer in Hollywood," and that Beverly Hills psychoanalyst May Romm, a friend of both Hecht's and Menninger's, has given approval to the film.
Dr. Romm weighs in with a rather contradictory letter. On the one hand, she says that her efforts to make changes in the film have been consistently frustrated: "To give you an example, I wanted to take out the word psychoanalyst and substitute psychiatrist for the leading female character [Bergman], but it was impossible to accomplish that. For even what I considered an improvement, I had to chew carpet." On the other hand, as inaccurate as the portrayal of psychoanalysis is, she says that the current version is a vast improvement on the original and that anyway "I, personally, feel that this is not an important picture from the standpoint of giving the public an understanding of the meaning of psychiatry or psychoanalysis. It's just an ordinary murder mystery."
Selznick does agree to an opening voice-over explaining the nature of psychoanalysis. The content quickly becomes a matter of contention, and the narration is changed to unspoken words that scroll across the screen at the film's opening. The final version reads "Our story deals with psychoanalysis, the method by which modern science treats the emotional problems of the sane." [I detect Dr. Karl's hand in that last word.] The analyst seeks only to induce the patient to talk about his hidden problems, to open the locked doors of his mind. Once the complexes that have been disturbing the patient are uncovered and interpreted, the illness and confusion disappear . . . and the devils of unreason are driven from the human soul."
Some readers have suggested that writing the blog must be "therapeutic," a word I'd resist. But who knows? Maybe I am driving the devils of unreason from ... but then again, 'soul' isn't a word in my vocabulary.
Last night on TCM I watched Alfred Hitchcock's Spellbound with Gregory Peck and Ingrid Bergman. It brought back memories that I hadn't thought of in a long time. Virginia Pruitt and I edited three volumes of Dr. Karl Menninger's letters, two of his professional correspondence and one of his brief time (1930-32) as an advice columnist for the Ladies' Home Journal. In the first two volumes, most of the correspondence is quite serious as psychoanalysis found its place in American intellectual and popular thought, but sometimes there were unexpected byways. The Spellbound diversion begins on July 13, 1944, when Joseph Mankiewicz, the famous Hollywood writer, director, and producer, writes a long and alarmed letter to Dr. Karl about the dangerous portrayal of psychoanalysis in the film, which is set in part at a mental hospital. He writes, "The psychoanalysts at the sanitarium are almost without exception maladjusted men--and they spend their time twitting each other about their fallibilies. They take turns in making passes at Bergman, whom they constantly tease as being emotionally and sexually frigid. I think I have rung enough gongs--it's time to get down to the purpose of this letter."
The script was written by Ben Hecht, whom Mankiewicz describes as "glib," and like "every other [David O.] Selznick productionn, [Spellbound] will be heavily exploited and there is every reason to believe that it will be an enormously successful film--which means that it will have an audience of millions of people." Mankiewicz wants Dr. Karl to write Selznick urging that the script be vetted by psychoalanlysts and that changes be made. Dr. Karl does indeed write Selznick, a letter rather obvious in its flattery, suggesting that the APA would be happy to review Hecht's script and make it one that educates the public about the true nature of psychoanalysis. Selznick replies that they were "very careful about everything in connection with the film," that Ben Hecht probably "knows more about psychiatry than any other writer in Hollywood," and that Beverly Hills psychoanalyst May Romm, a friend of both Hecht's and Menninger's, has given approval to the film.
Dr. Romm weighs in with a rather contradictory letter. On the one hand, she says that her efforts to make changes in the film have been consistently frustrated: "To give you an example, I wanted to take out the word psychoanalyst and substitute psychiatrist for the leading female character [Bergman], but it was impossible to accomplish that. For even what I considered an improvement, I had to chew carpet." On the other hand, as inaccurate as the portrayal of psychoanalysis is, she says that the current version is a vast improvement on the original and that anyway "I, personally, feel that this is not an important picture from the standpoint of giving the public an understanding of the meaning of psychiatry or psychoanalysis. It's just an ordinary murder mystery."
Selznick does agree to an opening voice-over explaining the nature of psychoanalysis. The content quickly becomes a matter of contention, and the narration is changed to unspoken words that scroll across the screen at the film's opening. The final version reads "Our story deals with psychoanalysis, the method by which modern science treats the emotional problems of the sane." [I detect Dr. Karl's hand in that last word.] The analyst seeks only to induce the patient to talk about his hidden problems, to open the locked doors of his mind. Once the complexes that have been disturbing the patient are uncovered and interpreted, the illness and confusion disappear . . . and the devils of unreason are driven from the human soul."
Some readers have suggested that writing the blog must be "therapeutic," a word I'd resist. But who knows? Maybe I am driving the devils of unreason from ... but then again, 'soul' isn't a word in my vocabulary.
Friday, April 5, 2013
A sacrilegious dream and a factoid: A week or so ago, I dreamed that Mohamed and I were walking through a woods when suddenly we stumbled across a huge open-air Mass being conducted by Pope Francis. There were thousands of people cordoned into six sections. We slipped into the back of the last section. The Pope--ever the iconoclast--announced that he was going to do communion first, so we waited patiently while all those people stood in line to receive communion. I told Mohamed he should just stay in his place (there were no seats), since the Pope wouldn't give him communion, but he insisted on joining the line. After hours of waiting, which passed more quickly in dream time, we were the last two left. I held up my hands, and the Pope said I was doing it wrong. He said he'd go get a booklet on how to take communion and then disappeared. Everyone was impatient. I remember that someone was listening to a basketball game on a transistor (!) radio; someone else was sitting in a rusted-out pickup smoking. That made me want a cigarette, but I decided it wouldn't be in good form to smoke while I waited for the Pope. Finally he returned, gave me the brochure, told me I still wasn't holding my hands right, and gave me the wafer. And then with no hesitation he gave one to Mohamed too. I was embarrassed and angry, so instead of putting the wafer in my mouth, I palmed it. I wasn't going to stay for the rest of the Mass, and on the way out, I decided to prop the host up at the base of a shrub to see whether the Pope would have a miraculous intuition that Christ's body and blood were exposed to the elements.
The doctrine of transubstantiation has some philosophical complications--and some technical ones. Millions of times a day, according to the doctrine, the bread and wine are miraculously transubstantiated into the body and blood of Christ. That's a hell of a lot of miracles! If it takes two miracles for someone to be canonized, sainthood should be a snap for every priest who's ever lived. Or do some miracles count more than others? And then there's the ewwww-factor. Should a religion actually be based on eating and drinking flesh and blood? And what about that moment when you realize that the wafer stuck to the roof of your mouth isn't bread but flesh? Less significant perhaps, but something that always fascinated me during by brief life as a Catholic, were the consequences if a consecrated host was dropped or wine was spilled. If the priest or a communicant should unintentionally drop the host, there are complicated rules for what to do (and no, the three-second rule doesn't come into play). If the wafer is intact, then either the priest or the congregant should eat it. But what if it is broken and there are crumbs? There are elaborate procedures for what should happen. What if drops of wine are accidentally spilled? After the communion is over, the priest scrapes up any crumbs on the altar and puts them in the chalice. He then adds water, swishes (the chalice, that is), and drinks whatever wine has remained. But what of any spots? And here's what I always found fascinating. Every Catholic church has a separate drainage system for washing anything that's potentially come into contact with the consecrated bread and wine. You can't just pop these things into a washer that will drain into the sewage system. There must be a separate system so that the water goes into the ground. So, too, if you've got a spot of wine on your shirt, you must hand wash it, air dry it, and pour the wash water into the ground, not down a regular drain.
As for the disc I left under the shrub, I haven't had a second dream to reveal what's happened to Christ's body and blood. If revelation strikes, I'll let you know.
The doctrine of transubstantiation has some philosophical complications--and some technical ones. Millions of times a day, according to the doctrine, the bread and wine are miraculously transubstantiated into the body and blood of Christ. That's a hell of a lot of miracles! If it takes two miracles for someone to be canonized, sainthood should be a snap for every priest who's ever lived. Or do some miracles count more than others? And then there's the ewwww-factor. Should a religion actually be based on eating and drinking flesh and blood? And what about that moment when you realize that the wafer stuck to the roof of your mouth isn't bread but flesh? Less significant perhaps, but something that always fascinated me during by brief life as a Catholic, were the consequences if a consecrated host was dropped or wine was spilled. If the priest or a communicant should unintentionally drop the host, there are complicated rules for what to do (and no, the three-second rule doesn't come into play). If the wafer is intact, then either the priest or the congregant should eat it. But what if it is broken and there are crumbs? There are elaborate procedures for what should happen. What if drops of wine are accidentally spilled? After the communion is over, the priest scrapes up any crumbs on the altar and puts them in the chalice. He then adds water, swishes (the chalice, that is), and drinks whatever wine has remained. But what of any spots? And here's what I always found fascinating. Every Catholic church has a separate drainage system for washing anything that's potentially come into contact with the consecrated bread and wine. You can't just pop these things into a washer that will drain into the sewage system. There must be a separate system so that the water goes into the ground. So, too, if you've got a spot of wine on your shirt, you must hand wash it, air dry it, and pour the wash water into the ground, not down a regular drain.
As for the disc I left under the shrub, I haven't had a second dream to reveal what's happened to Christ's body and blood. If revelation strikes, I'll let you know.
Tuesday, April 2, 2013
The last 54 hours haven't been great. My stomach, despite massive quantities of Imodium, hasn't been cooperating, and all of that leads to more fatigue and less energy to get things done. I haven't even read anything, though it doesn't help that the last book I downloaded to my Kindle was David Foster Wallace's 1100 page Infinite Jest. I read about 40 pages of it, and it wasn't nearly as show-offy as I had expected, but somehow I'm having trouble picking it up again. The Kindle lies like a reproach on the table in front of me. Not having much energy and not having done much, today's entry is going to be short (oh-oh--a dangling modifier; I'd never let my students get away with that sentence). This isn't meant to be worrisome: the ups and downs are constant, and sometimes the ups are higher and the downs are lower than others. It's just the way it is, has been, and, I'm sure, will continue to be. I've taken chemo every day for the last 21 months, and although it's clearly done really good things since I've more than doubled my prognosis, it's also inevitable that my body won't always be happy with the injection of toxic chemicals.
One of the hardest things about living with cancer is what it does to your self-image. I've often said in these blogs that something is just my nature or is simply not my nature. And I do believe that for most people, a cancer diagnosis doesn't lead to an epiphany (when someone claims it does, the enlightenment is always the same: live everyday to the fullest, etc.) and changes in the way one lives but rather just reinforces the way people already are. But sometimes the physical realities clash with the way one has always seen oneself. Some of the conflicts are reflections of the new physical conditions: my hair turned white, I limp, I have trouble with stairs unless there's a railing. But more significant are changes in how I see myself. I had always thought of myself as energetic, curious, adventurous. I prized competence and getting things done. Now, I make a mental list of what I need to do during the day, and if there are more than two things on the list, it seems overwhelming. Just getting my tuches off the couch to clean up the kitchen requires several minutes of forethought. I always thought of myself as someone who laughed easily and often. I still do when I'm awake, but three hours after I take the chemo, I know I'm going to crash for an hour or so. After lunch, I know that the black wave of fatigue is going to drive me to bed for two hours. I'm not exactly a fun person these days. And it's Mohamed who has to see me this way 24 hours a day.
I'll be back on Friday with, I promise, more energy.
One of the hardest things about living with cancer is what it does to your self-image. I've often said in these blogs that something is just my nature or is simply not my nature. And I do believe that for most people, a cancer diagnosis doesn't lead to an epiphany (when someone claims it does, the enlightenment is always the same: live everyday to the fullest, etc.) and changes in the way one lives but rather just reinforces the way people already are. But sometimes the physical realities clash with the way one has always seen oneself. Some of the conflicts are reflections of the new physical conditions: my hair turned white, I limp, I have trouble with stairs unless there's a railing. But more significant are changes in how I see myself. I had always thought of myself as energetic, curious, adventurous. I prized competence and getting things done. Now, I make a mental list of what I need to do during the day, and if there are more than two things on the list, it seems overwhelming. Just getting my tuches off the couch to clean up the kitchen requires several minutes of forethought. I always thought of myself as someone who laughed easily and often. I still do when I'm awake, but three hours after I take the chemo, I know I'm going to crash for an hour or so. After lunch, I know that the black wave of fatigue is going to drive me to bed for two hours. I'm not exactly a fun person these days. And it's Mohamed who has to see me this way 24 hours a day.
I'll be back on Friday with, I promise, more energy.
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