This past week has been extraordinary in many ways. On Tuesday evening, I was part of a very successful reading by three writers (Ronnie Hess, Laura Sims, and I) of so-far-unpublished memoirs. I read a few pages from my manuscript about fear; the short section describes my worries in January 2005, when I knew something was wrong with me, but I didn't know what. (I thought I had heart problems.) The reading, like all readings these days, made me anxious, because I don't trust (or like) my voice. But audience members said it went very well, and was funny as well as moving. And that was reassuring to me, because on Wednesday, I was going into a recording studio for the first time since I retired from public radio in 1999, to record a commentary my former colleagues had requested for a To the Best of Our Knowledge (TTBOOK) program on death and dying.
I am posting the text of the commentary after these introductory paragraphs. Some of the material will be familiar to those who've read earlier blog posts of mine, but it is put together in a new way, and I thought that people who weren't able to hear the program might be interested. The recording session went very smoothly; it was wonderful to see my former colleagues, and a real gift from them to be invited to do the commentary. And they did a great job of editing the recording so listeners said I sounded quite good. I have a hard time judging; I sound quite awful to myself, because I'm always comparing the way I sound now to how I used to sound. And I confess that I used to be very proud of having a "good" speaking voice. Well, we all know what pride goes before....
The third extraordinary thing about the week has been visits by both my sons and my sister Susie. Jed has been here since last weekend, so he was able to come to the memoir reading, to my delight. Nate and Susie arrived Saturday and left this afternoon. Aside from the fact that the three of them spent an awful lot of time talking about their iPhones and their Macs, and I'm a PC/Windows person--and that I lost to them all at Scrabble last night--it was a great visit! Jed and I will both be leaving Madison on Wednesday this week--he to return home, and I to spend a long weekend in Arizona, at an equine retreat for cancer survivors at a retreat center outside Tucson, called Sunstone. (The weather, I'm happy to say, is expected to be in the mid-70s while I'm there. Right now in Madison, we're awaiting another predicted ice/snow storm.) I'll report on the retreat next week, but because of my travel schedule, I'll post the next entry on Tuesday, March 5, instead of the usual Monday.
Here's the TTBOOK commentary text:
I have known for a long time that nothing--and no one--lives forever. When I was 24, my mother died. She was only 48. A few years later, I was hiking in the Sierra Nevada through a forest of giant Douglas firs, tiny seedling firs, huge dead and rotting fir logs. I had my eye out for deer. The sun lifted the scent of humus into the air and I suddenly realized that death--the death of trees, and deer, and people, too--is simply a part of life.
When I was 37, I confronted my own mortality. I was diagnosed with Hodgkin's disease, a potentially fatal cancer. A year of intense chemotherapy and radiation saved my life--and probably also caused the stomach cancer that spread to my lungs 18 months ago. Unlike Hodgkin's disease, metastatic stomach cancer has no cure. I'm only 63. Many Americans live into their 70s and 80s. Dying before the age of 65 seems obscene-- but when my cancer spread, I was given a prognosis of nine to eighteen months. I've outlived that prognosis, but I'll be lucky to make it to 64.
Still, I'm not afraid of death. As far as I can tell, when you're dead, you're dead. It's the people who are left behind who suffer, not the dead person. The process of dying is more problematic. Of course, I'd like to avoid pain, and I really don't want friends and family to endure a death-watch that lasts endless days or weeks. But I've done what I can to ward off such miseries. I have a signed Do Not Resuscitate order and a healthcare power of attorney who knows I would refuse extreme, invasive procedures. I have a certain amount of faith in my doctors, hospice, my relatively high tolerance for pain, and the power of morphine to make the process of dying as easy as possible. And I was relieved to learn, when a good friend died recently, that a cancer death can be relatively quick.
Many people don't want to think about death--their own, especially. But for me, it's essential. Facing death is the only way I can live. It makes me grateful for every day I have. Because I know I may die soon, I try to be conscious of how I live, how I spend my time. Time is precious: it's really all we have.
Time--and the knowledge that after we die, life, and the world, go on. No one is indispensable. We each make our small contribution to the cycle of life. After we're gone, we live in the memories and the actions of our friends and families. Our bodies return to earth. But like those dead and decaying fir trees in the California mountains, our essence remains, a whiff of immortality.
Monday, February 25, 2008
Monday, February 18, 2008
Some Bits of Miscellany
No profound thoughts today; just a little follow-up to my last blog, and a health update, for those of you who are curious. (Preview: things are fine.)
Politics: Just after I "published" my last post, I realized that my concept of a President's job has changed, and my current idea--that a President is, perforce, a leader rather than a policy-maker--is one of the reasons I support Barack Obama. Certainly, policy issues are important, and important to me. But no next President--not an Obama, nor a Clinton, nor a McCain--will be able to implement his or her policies without the support of Congress. Not even the most "experienced" President can enact a law. Those of us who want to see progressive policies implemented must work to ensure that we elect progressive legislators, and then be sure they know that we're expecting them to work on our behalf!
I was at the Obama rally in Madison last Tuesday. What most impressed me (other than the enthusiasm of the crowd) was his clear statement that we will change the political system only if we all work for change. I think he understands that he can propose policies, but he can't implement them without our help. But an engaged, active, electorate--energized and inspired by a true leader--can do almost anything. It's not at all clear to me that Hillary Clinton, for all her experience, has that kind of understanding of the political process. During her foray into the health care morass as First Lady, for example, she did (as I recall) very little to rally public support. And as a result, the well-financed (and apparently corrupt--check out what's happening in New York--see editorial in today's Times) insurance industry had its way.
Blog Sharing: Shortly after I wrote last week, a friend of a friend discovered my blog. She lives in Virginia and had just spent four hours helping to get out the vote for Obama. She asked if she could re-post my blog on other blogs. Of course, her email made my day! And she posted the blog entry on the Daily Kos and Obama's website, and sent copies (or maybe a link, I'm not sure) to about 25 friends. A big thank you to her, and to any of you who have shared any part of what I've written with other people.
Now, it's clear to me that politics is much more interesting to most people than death and cancer. But for those of you who are curious:
Health Update: I'm doing very well. The current chemo regime (oxalyplatin every other Thursday) seems to be working; I've outlived my prognosis and am growing stronger every day, thanks to a combination of whey protein and strength training at the gym. (Those body- builders apparently know what they're doing! But no, no anabolic steroids for me.) My breathing is much improved since the fall, though I'm not up to skiing or, as I noted a couple of weeks ago, swimming. If the snow would ever stop falling, and what's on the ground would melt, I'd try biking on the bike path, though!
The next CT scan won't be for a month or two. Dr. Holen, my oncologist, explained that patients sometimes develop an allergy to the contrast they infuse during the procedure, and the more times you're exposed to the contrast, the greater the probability of an allergic reaction. Besides, what matters, really, is the clinical evidence--that my breathing is better, my voice is no worse (and possibly better), and so forth. After all, the last CT scan I had, in September, looked pretty good. And less than a week later I woke in the middle of the night, unable to breathe, and it soon became clear that however small the tumors were, one or two of them were affecting crucial nerves. I think if (or when) the chemo stops working, it'll be clear to me and everyone else!
But I'm hoping that won't happen at least until I've had a chance to vote in November!
Politics: Just after I "published" my last post, I realized that my concept of a President's job has changed, and my current idea--that a President is, perforce, a leader rather than a policy-maker--is one of the reasons I support Barack Obama. Certainly, policy issues are important, and important to me. But no next President--not an Obama, nor a Clinton, nor a McCain--will be able to implement his or her policies without the support of Congress. Not even the most "experienced" President can enact a law. Those of us who want to see progressive policies implemented must work to ensure that we elect progressive legislators, and then be sure they know that we're expecting them to work on our behalf!
I was at the Obama rally in Madison last Tuesday. What most impressed me (other than the enthusiasm of the crowd) was his clear statement that we will change the political system only if we all work for change. I think he understands that he can propose policies, but he can't implement them without our help. But an engaged, active, electorate--energized and inspired by a true leader--can do almost anything. It's not at all clear to me that Hillary Clinton, for all her experience, has that kind of understanding of the political process. During her foray into the health care morass as First Lady, for example, she did (as I recall) very little to rally public support. And as a result, the well-financed (and apparently corrupt--check out what's happening in New York--see editorial in today's Times) insurance industry had its way.
Blog Sharing: Shortly after I wrote last week, a friend of a friend discovered my blog. She lives in Virginia and had just spent four hours helping to get out the vote for Obama. She asked if she could re-post my blog on other blogs. Of course, her email made my day! And she posted the blog entry on the Daily Kos and Obama's website, and sent copies (or maybe a link, I'm not sure) to about 25 friends. A big thank you to her, and to any of you who have shared any part of what I've written with other people.
Now, it's clear to me that politics is much more interesting to most people than death and cancer. But for those of you who are curious:
Health Update: I'm doing very well. The current chemo regime (oxalyplatin every other Thursday) seems to be working; I've outlived my prognosis and am growing stronger every day, thanks to a combination of whey protein and strength training at the gym. (Those body- builders apparently know what they're doing! But no, no anabolic steroids for me.) My breathing is much improved since the fall, though I'm not up to skiing or, as I noted a couple of weeks ago, swimming. If the snow would ever stop falling, and what's on the ground would melt, I'd try biking on the bike path, though!
The next CT scan won't be for a month or two. Dr. Holen, my oncologist, explained that patients sometimes develop an allergy to the contrast they infuse during the procedure, and the more times you're exposed to the contrast, the greater the probability of an allergic reaction. Besides, what matters, really, is the clinical evidence--that my breathing is better, my voice is no worse (and possibly better), and so forth. After all, the last CT scan I had, in September, looked pretty good. And less than a week later I woke in the middle of the night, unable to breathe, and it soon became clear that however small the tumors were, one or two of them were affecting crucial nerves. I think if (or when) the chemo stops working, it'll be clear to me and everyone else!
But I'm hoping that won't happen at least until I've had a chance to vote in November!
Monday, February 11, 2008
Hillary, Barack, and the Passage of Time
I've been thinking quite a lot about the passage of time this past week, as I've been celebrating three years' survival with stomach cancer. That's a short time, in the scheme of things-- less than 5% of my life, for example, less than a single Presidential term-- but a long time in the world of stomach cancer survival. Time, as we all know, is oddly elastic, especially for something that we measure so precisely.
I was reminded again about the elasticity of time this morning, when Robin Chapman and I gave a talk about our poetry anthology, On Retirement: 75 Poems, at Attic Angels, a local retirement community. In the talk, we describe the process of putting the anthology together, and also the arc of the retirement years as part of the process of human development. The audience was, as you might expect, mostly elderly; most, in fact, probably ten or twenty years older than either Robin or I, who are in our 60s. They were attentive and obviously interested in what we had to say, but I suspect that they--with their much longer experience of both retirement and the aging process--had more to teach us than we could teach them.
Among other things, those of us who have been retired for a while begin to understand that we are not indispensable. Our former employers have long since replaced us with younger, more energetic people: employees who still burn with the fire of ambition, and who see in the workplace possibilities that we long ago dismissed (out of cynicism or hard experience) as unrealistic, unwise, or simply too difficult to merit any expenditure of our time and energy. We have more important things to attend to: long-deferred avocational goals, causes we believe in, grandchildren, crossword puzzles and exercise classes to keep our minds and bodies strong. There are good reasons for retiring-- and good reasons (in addition to saving on our higher salaries and better benefits) that our employers were not unhappy to replace us with younger colleagues.
But none of us really feels "old." We know time has passed--two decades, three, four or more--but we still see ourselves as the twenty-somethings who fell madly in love; the thirty-somethings who gave our all to work; the young parents who spent weekends juggling toddlers' play time, grocery shopping, and endless loads of laundry. We need grandchildren to load our iPods and un-freeze our computers; we know that time and technology has moved along; but many of us are nostalgic for causes and passions that compelled us when we were college students. I remember, when I was a teenager, thinking that World War II was ancient history. In fact, I graduated from high school in 1962, only 17 years after the end of that war. Right now, we are about twice that far from the end of the Vietnam War; nearly forty years past the "Summer of Love." It all seems as though it was just yesterday, but surely, it is "ancient history."
Which brings me to the question of Hillary vs. Barack. I am, as those of you who know me are aware, a strong feminist. But we are long past the the Second Wave of feminism. That is a hard lesson to learn for those of us who were raised with limited options, when there were virtually no women doctors, no women lawyers, no women politicians, no career opportunities for girls other than secretary, teacher, librarian, cosmetician. The Second Wave was truly liberating for us; we don't want to give it up, don't want to acknowledge that times have changed, though four decades have passed. But even in the late 1960s, I had a hard time believing that a woman in the White House would be enough to ensure peace, though I certainly wanted to believe it. (How could a mother justify sending young men off to be killed?) Nonetheless I, like most bright girls of my generation, like--I suspect--Hillary Rodham, was brought up to "think like a man" if I wanted to be respected, to be taken seriously. Thinking like a man, acting tough enough to be considered for Commander in Chief by a still-sexist voting public, is not likely to produce a significantly different kind of president, even if she is a woman.
So the feminist desire for a woman in a White House is not enough to convince me to vote for Hillary. But even more, the understanding that time has passed (even when it seems to have stood still), informs my support for Barack Obama. I believe that it is essential to our democracy to engage young people in the political process. I want my children and their friends to feel the kind of passionate involvement that I and my friends felt during the Vietnam era. We believed that what we did would make a difference. And it did. We weren't very engaged in traditional politics; we were, after 1968, mostly turned off by the electoral system. But politics, in a larger sense, was an essential part of our life.
Barack Obama inspires this sort of commitment in a new generation. That is what I understand to be the consequence of his call for hope and for change. The new generation is the future of our nation, in the same way that the younger colleagues who fill retirees' jobs are the future of any workplace. It's particularly important, I think, that those of us who have experienced the cycle of hope and disillusion in politics since the Kennedy era, recognize how important it is that we return to a politics of hope. Imagine how awful it would be to have come to consciousness some time after 1970 or so! For anyone under the age of about 40 or 45, this is the case. A few years ago, I was working with a very smart, very politically savvy, very progressive younger friend who had trouble accepting the possibility that the political pendulum might have reached the far right of its swing, and that she could, in her lifetime, see better times. All she had ever seen of politics--all my children have ever seen--was so demoralizing and discouraging that she could barely imagine even the possibility of a different political mood, much less of progressive policies.
A politics of despair can only inhibit political participation, and will ultimately destroy democracy. Barack Obama not only understands the importance of a politics of hope; his speeches and his actions have already inspired millions of younger people to get involved in politics. That is why I am joining my children in their support for his campaign, and why I encourage you to support him, too.
Reminder: I will be reading from my memoir about fear on Tuesday, Feb. 19th (primary election day in Wisconsin), 7 PM at Avol's (at the site of the late, lamented Canterbury Bookstore in Madison). Please come if you can!
I was reminded again about the elasticity of time this morning, when Robin Chapman and I gave a talk about our poetry anthology, On Retirement: 75 Poems, at Attic Angels, a local retirement community. In the talk, we describe the process of putting the anthology together, and also the arc of the retirement years as part of the process of human development. The audience was, as you might expect, mostly elderly; most, in fact, probably ten or twenty years older than either Robin or I, who are in our 60s. They were attentive and obviously interested in what we had to say, but I suspect that they--with their much longer experience of both retirement and the aging process--had more to teach us than we could teach them.
Among other things, those of us who have been retired for a while begin to understand that we are not indispensable. Our former employers have long since replaced us with younger, more energetic people: employees who still burn with the fire of ambition, and who see in the workplace possibilities that we long ago dismissed (out of cynicism or hard experience) as unrealistic, unwise, or simply too difficult to merit any expenditure of our time and energy. We have more important things to attend to: long-deferred avocational goals, causes we believe in, grandchildren, crossword puzzles and exercise classes to keep our minds and bodies strong. There are good reasons for retiring-- and good reasons (in addition to saving on our higher salaries and better benefits) that our employers were not unhappy to replace us with younger colleagues.
But none of us really feels "old." We know time has passed--two decades, three, four or more--but we still see ourselves as the twenty-somethings who fell madly in love; the thirty-somethings who gave our all to work; the young parents who spent weekends juggling toddlers' play time, grocery shopping, and endless loads of laundry. We need grandchildren to load our iPods and un-freeze our computers; we know that time and technology has moved along; but many of us are nostalgic for causes and passions that compelled us when we were college students. I remember, when I was a teenager, thinking that World War II was ancient history. In fact, I graduated from high school in 1962, only 17 years after the end of that war. Right now, we are about twice that far from the end of the Vietnam War; nearly forty years past the "Summer of Love." It all seems as though it was just yesterday, but surely, it is "ancient history."
Which brings me to the question of Hillary vs. Barack. I am, as those of you who know me are aware, a strong feminist. But we are long past the the Second Wave of feminism. That is a hard lesson to learn for those of us who were raised with limited options, when there were virtually no women doctors, no women lawyers, no women politicians, no career opportunities for girls other than secretary, teacher, librarian, cosmetician. The Second Wave was truly liberating for us; we don't want to give it up, don't want to acknowledge that times have changed, though four decades have passed. But even in the late 1960s, I had a hard time believing that a woman in the White House would be enough to ensure peace, though I certainly wanted to believe it. (How could a mother justify sending young men off to be killed?) Nonetheless I, like most bright girls of my generation, like--I suspect--Hillary Rodham, was brought up to "think like a man" if I wanted to be respected, to be taken seriously. Thinking like a man, acting tough enough to be considered for Commander in Chief by a still-sexist voting public, is not likely to produce a significantly different kind of president, even if she is a woman.
So the feminist desire for a woman in a White House is not enough to convince me to vote for Hillary. But even more, the understanding that time has passed (even when it seems to have stood still), informs my support for Barack Obama. I believe that it is essential to our democracy to engage young people in the political process. I want my children and their friends to feel the kind of passionate involvement that I and my friends felt during the Vietnam era. We believed that what we did would make a difference. And it did. We weren't very engaged in traditional politics; we were, after 1968, mostly turned off by the electoral system. But politics, in a larger sense, was an essential part of our life.
Barack Obama inspires this sort of commitment in a new generation. That is what I understand to be the consequence of his call for hope and for change. The new generation is the future of our nation, in the same way that the younger colleagues who fill retirees' jobs are the future of any workplace. It's particularly important, I think, that those of us who have experienced the cycle of hope and disillusion in politics since the Kennedy era, recognize how important it is that we return to a politics of hope. Imagine how awful it would be to have come to consciousness some time after 1970 or so! For anyone under the age of about 40 or 45, this is the case. A few years ago, I was working with a very smart, very politically savvy, very progressive younger friend who had trouble accepting the possibility that the political pendulum might have reached the far right of its swing, and that she could, in her lifetime, see better times. All she had ever seen of politics--all my children have ever seen--was so demoralizing and discouraging that she could barely imagine even the possibility of a different political mood, much less of progressive policies.
A politics of despair can only inhibit political participation, and will ultimately destroy democracy. Barack Obama not only understands the importance of a politics of hope; his speeches and his actions have already inspired millions of younger people to get involved in politics. That is why I am joining my children in their support for his campaign, and why I encourage you to support him, too.
Reminder: I will be reading from my memoir about fear on Tuesday, Feb. 19th (primary election day in Wisconsin), 7 PM at Avol's (at the site of the late, lamented Canterbury Bookstore in Madison). Please come if you can!
Monday, February 4, 2008
Warming Up!
And I mean warming up in two senses: first, a report on the warm Caribbean, before memories of my short and very wonderful vacation last week fade into the next snowstorm (due tomorrow, 5-8 inches, according to the too-trusty weatherman); and second, another little rant on the issue of health insurance.
The Virgin Islands were wonderful, despite the obvious degradation of one of my erstwhile favorite spots on earth, the Baths (batholiths) on Virgin Gorda in the British Virgins. When I first saw them, in the late 1970s, they, and the beach, were pristine and virtually deserted. Ten years later, there were more people, and the water (which collects in shallow pools between the house-size boulders) seemed less clear, though that might have been because of surf roiling the sand. I was a little apprehensive about returning after another 20 years had gone by, but I decided to take a day-long boat tour of the BVI, partly because I love boat rides, and partly because the tour included a snorkeling opportunity at the sea caves on Norman Island. (More about that later.) The Baths were the morning part of the tour, and when we got there, I discovered that in the last year, someone has installed some ladders and boardwalks so that instead of clambering over the boulders or swimming through the deeper pools of water, tourists can pretty easily walk through what used to be a bit of an obstacle course. And now cruise ships visit the Baths! In fact there was a huge group from a cruise ship just ahead of us. Definitely not the experience of a lifetime. I was really glad I'd been there before; this time, I could just people-watch and reflect on the pros and cons of tourism. Because of course I was a tourist, too.
And I did a lot of touristing in only four days: sitting on the beach at the Bolongo Bay resort near my friend Jackie's condo; taking the ferry to St. John's, and then an hour-long city bus trip (for $1!) all the way across the island to a snorkeling site protected from the big rollers coming in on the north shore of the island; wandering through the shops on St. Thomas and watching the cruise ship tourists look for "bargains" (one day there were 5 cruise ships in the harbor, each carrying about 2,000 passengers); and eating the most fabulous fish, wahoo, that had probably been swimming in the ocean only two hours before, at Epernay, an excellent restaurant on St. Thomas.
I had expected to snorkel and see a lot of pretty fish. As it turned out, the St. John's snorkeling spot was mostly dead reef, except for very far out-- but even more problematic, I discovered that although I could deal with the snorkel just fine, I'm not strong enough to swim very far. I was appalled, in fact, at how weak my arms seemed, and how quickly I tired--like in five minutes, swimming off the boat at Norman Island, I realized I'd better turn around and get back on board. Yesterday I went to the health club to swim in the warm water pool (the cold water in the regular lap pool just knocks the breath out of me); only ten lengths, which in that pool are very short--and only two of those lengths crawl--practically did me in. This morning I mentioned that to one of the trainers who teaches warm water classes and she pointed out that anemia and hypothyroidism, both of which I have as a consequence of chemo, really affect strength and stamina. So be it. Even though I couldn't really snorkel, and didn't get to see the fan coral in the sea caves, I was so thrilled to be in the warm Caribbean celebrating three years' survival with stomach cancer, it didn't matter. I did get to swim with a big school of yellow-tailed fish attracted by bread thrown off our tour boat, and in my imagination, I saw tangs and starfish and rays and sharks and all the other pretty and intriguing inhabitants of the deep that I've snorkeled with in the Galapagos, off Hawaii, and in the Caribbean on past trips. The experience reminded me of the movie, "The Diving Bell and the Butterfly," which I saw a month or two ago. If you haven't seen it, definitely do go.
And now for the health insurance rant. This morning, I went to pick up my cello, which spent its vacation having some minor repairs done. My luthier friend had a heart attack last year, and I asked him how he was doing. He told me that his health was stable, but as we talked, I heard his insurance horror story. He was (fortunately, probably) in Cleveland when he had the attack, and so he had surgery and spent at least two weeks at the Cleveland Clinic. He and his wife are self-employed as string instrument builders and repairers. She's older than he is, and eligible for Medicare, so he carries his own insurance, as an individual, through the company (not an HMO) that also insures Madison teachers as a group. The insurance company, once he had the heart attack, did its best to cancel his policy and refused to pay the $200,000 he owed for his treatment in Cleveland! As my friend said, they like to insure two kinds of people: dead ones and well ones. And since he was neither--and wasn't part of a group policy--they singled him out as a bad and much-too-expensive risk. It took many months, the services of a lawyer, and the threat of a law suit to get the insurance company to back down. Imagine going through all that stress while trying to recover from a serious heart attack! Of course, insurance companies count on sick people not having the energy to fight for their rights. And the skyrocketing cost of health care is largely due to increased administrative expenses, including the many very smart (according to my friend) and presumably well-paid insurance company employees who spent months trying to defend their employer against my friend's "unreasonable" claim.
None of the health reform packages that feature private insurance--which is to say, none of the reform packages proposed by current Democratic or Republican presidential candidates--will cure this sort of denial-of-benefits problem. Which is one reason my friend now sports a Canadian flag on his bumper. And why we should all push hard for single-payer, not just "universal," health insurance.
Finally, two announcements. First, a reminder that I will be reading from my memoir on fear at Avol's Bookstore in Madison, Tuesday evening February 19, 7 PM. Y'all come! Second, I've decided to try to update this blog every Monday. That will give those of you who've had trouble subscribing a set time to check for new posts. See you next Monday!
The Virgin Islands were wonderful, despite the obvious degradation of one of my erstwhile favorite spots on earth, the Baths (batholiths) on Virgin Gorda in the British Virgins. When I first saw them, in the late 1970s, they, and the beach, were pristine and virtually deserted. Ten years later, there were more people, and the water (which collects in shallow pools between the house-size boulders) seemed less clear, though that might have been because of surf roiling the sand. I was a little apprehensive about returning after another 20 years had gone by, but I decided to take a day-long boat tour of the BVI, partly because I love boat rides, and partly because the tour included a snorkeling opportunity at the sea caves on Norman Island. (More about that later.) The Baths were the morning part of the tour, and when we got there, I discovered that in the last year, someone has installed some ladders and boardwalks so that instead of clambering over the boulders or swimming through the deeper pools of water, tourists can pretty easily walk through what used to be a bit of an obstacle course. And now cruise ships visit the Baths! In fact there was a huge group from a cruise ship just ahead of us. Definitely not the experience of a lifetime. I was really glad I'd been there before; this time, I could just people-watch and reflect on the pros and cons of tourism. Because of course I was a tourist, too.
And I did a lot of touristing in only four days: sitting on the beach at the Bolongo Bay resort near my friend Jackie's condo; taking the ferry to St. John's, and then an hour-long city bus trip (for $1!) all the way across the island to a snorkeling site protected from the big rollers coming in on the north shore of the island; wandering through the shops on St. Thomas and watching the cruise ship tourists look for "bargains" (one day there were 5 cruise ships in the harbor, each carrying about 2,000 passengers); and eating the most fabulous fish, wahoo, that had probably been swimming in the ocean only two hours before, at Epernay, an excellent restaurant on St. Thomas.
I had expected to snorkel and see a lot of pretty fish. As it turned out, the St. John's snorkeling spot was mostly dead reef, except for very far out-- but even more problematic, I discovered that although I could deal with the snorkel just fine, I'm not strong enough to swim very far. I was appalled, in fact, at how weak my arms seemed, and how quickly I tired--like in five minutes, swimming off the boat at Norman Island, I realized I'd better turn around and get back on board. Yesterday I went to the health club to swim in the warm water pool (the cold water in the regular lap pool just knocks the breath out of me); only ten lengths, which in that pool are very short--and only two of those lengths crawl--practically did me in. This morning I mentioned that to one of the trainers who teaches warm water classes and she pointed out that anemia and hypothyroidism, both of which I have as a consequence of chemo, really affect strength and stamina. So be it. Even though I couldn't really snorkel, and didn't get to see the fan coral in the sea caves, I was so thrilled to be in the warm Caribbean celebrating three years' survival with stomach cancer, it didn't matter. I did get to swim with a big school of yellow-tailed fish attracted by bread thrown off our tour boat, and in my imagination, I saw tangs and starfish and rays and sharks and all the other pretty and intriguing inhabitants of the deep that I've snorkeled with in the Galapagos, off Hawaii, and in the Caribbean on past trips. The experience reminded me of the movie, "The Diving Bell and the Butterfly," which I saw a month or two ago. If you haven't seen it, definitely do go.
And now for the health insurance rant. This morning, I went to pick up my cello, which spent its vacation having some minor repairs done. My luthier friend had a heart attack last year, and I asked him how he was doing. He told me that his health was stable, but as we talked, I heard his insurance horror story. He was (fortunately, probably) in Cleveland when he had the attack, and so he had surgery and spent at least two weeks at the Cleveland Clinic. He and his wife are self-employed as string instrument builders and repairers. She's older than he is, and eligible for Medicare, so he carries his own insurance, as an individual, through the company (not an HMO) that also insures Madison teachers as a group. The insurance company, once he had the heart attack, did its best to cancel his policy and refused to pay the $200,000 he owed for his treatment in Cleveland! As my friend said, they like to insure two kinds of people: dead ones and well ones. And since he was neither--and wasn't part of a group policy--they singled him out as a bad and much-too-expensive risk. It took many months, the services of a lawyer, and the threat of a law suit to get the insurance company to back down. Imagine going through all that stress while trying to recover from a serious heart attack! Of course, insurance companies count on sick people not having the energy to fight for their rights. And the skyrocketing cost of health care is largely due to increased administrative expenses, including the many very smart (according to my friend) and presumably well-paid insurance company employees who spent months trying to defend their employer against my friend's "unreasonable" claim.
None of the health reform packages that feature private insurance--which is to say, none of the reform packages proposed by current Democratic or Republican presidential candidates--will cure this sort of denial-of-benefits problem. Which is one reason my friend now sports a Canadian flag on his bumper. And why we should all push hard for single-payer, not just "universal," health insurance.
Finally, two announcements. First, a reminder that I will be reading from my memoir on fear at Avol's Bookstore in Madison, Tuesday evening February 19, 7 PM. Y'all come! Second, I've decided to try to update this blog every Monday. That will give those of you who've had trouble subscribing a set time to check for new posts. See you next Monday!
Saturday, January 26, 2008
Fear
Now, this is an odd topic for a post I'm writing just an hour-and-a-half before I leave for the Virgin Islands! But it's something I've been meaning to write about since last fall-- and it's also an excuse to invite those of you in Madison to my next reading, on Tuesday evening, February 19, 7:00 PM at Avol's Bookstore, 315 W. Gorham St. I'll be reading from my unpublished (maybe never-to-be-published) memoir about fear. It's likely the only opportunity you'll have to experience any part of this magnum opus, so do come!
Last fall, someone asked me if I was afraid. "Of what?" I asked, surprised by the question, even though it came in the middle of a fairly serious conversation. I explained that I don't see any reason to be afraid of death (although I know a lot of people, especially young people are-- and I was probably afraid of it when I was younger, too). As far as I can tell, when you're dead, you're dead. It's the people who are left behind who suffer, not the dead person. The people I feel sorry for are the ones who believe in a literal heaven and hell; they must worry about where they're going to end up. Though someone explained to me that those people also believe in salvation, so they don't actually have to worry, even if they're terrible sinners. Anyway, that's clearly not my theology.
The process of dying is more problematic. Of course, I'd like to avoid pain and suffering, and especially would like not to subject friends and family to endless days and weeks of watching me suffer. But I've done what I can (having a healthcare power of attorney who knows my wishes, and a signed DNR order) to ensure that I'm not subjected to procedures that might lead to unnecessary pain and suffering. And I have a certain amount of faith in my doctors, hospice, my relatively high tolerance for pain, and the power of morphine to make the process of dying as easy as possible. And as I mentioned in December, in my post about my friend Jane Henkel, I was relieved to realize, from her experience, that a cancer death can be relatively quick and doesn't necessarily involve a weeks-long death watch.
I've thought about all this several times recently, when I heard Susan Sontag's son, David Rieff, interviewed by Terry Gross, and when I read the review in the current New York Review of Books of Rieff's memoir of his mother's death. Sontag, according to Rieff, clung so fiercely to life that she insisted on an extremely painful bone marrow transplant, even though doctors said it was extremely unlikely to work, to treat her third cancer, a rare blood disease. I had previously had enormous respect for Sontag; her book, Lllness as Metaphor, came out just after I had Hodgkin's disease, and I thought it was very wise. But when I heard about Sontag's insistence (from the time she was 16, apparently) that she would not allow death to shorten her life, I was appalled at her arrogance. Not as a sixteen-year-old; most teenagers believe they're immortal, after all. But it seems to me that a highly-intelligent woman of 70 who had already survived two cancers (breast and uterine) should understand that no one lives forever; that she has been granted more than twenty years (since her first, very serious, cancer) because of her privileged economic and social status; and that gratitude and acceptance, rather than arrogance, are more appropriate responses. Though I suppose that doesn't have much to do with intelligence.
Sontag was apparently so focused on living that she refused to talk about death, or to accept that she was dying; something that continues, two years after her death, to upset her son, who felt he could only support her wishes, rather than tell her the truth about her situation. This, obviously, is so different from my attitude that it's almost incomprehensible to me. And I'm grateful both for the blog technology and for the forbearance of my readers that I am able to talk, or at least write, about the truth as I see it.
No, I'm not afraid. I'm also not dying at the moment! I'm waiting for the taxi to start me on my vacation with the sun and the pretty fishes. Back in a week or so.....
Last fall, someone asked me if I was afraid. "Of what?" I asked, surprised by the question, even though it came in the middle of a fairly serious conversation. I explained that I don't see any reason to be afraid of death (although I know a lot of people, especially young people are-- and I was probably afraid of it when I was younger, too). As far as I can tell, when you're dead, you're dead. It's the people who are left behind who suffer, not the dead person. The people I feel sorry for are the ones who believe in a literal heaven and hell; they must worry about where they're going to end up. Though someone explained to me that those people also believe in salvation, so they don't actually have to worry, even if they're terrible sinners. Anyway, that's clearly not my theology.
The process of dying is more problematic. Of course, I'd like to avoid pain and suffering, and especially would like not to subject friends and family to endless days and weeks of watching me suffer. But I've done what I can (having a healthcare power of attorney who knows my wishes, and a signed DNR order) to ensure that I'm not subjected to procedures that might lead to unnecessary pain and suffering. And I have a certain amount of faith in my doctors, hospice, my relatively high tolerance for pain, and the power of morphine to make the process of dying as easy as possible. And as I mentioned in December, in my post about my friend Jane Henkel, I was relieved to realize, from her experience, that a cancer death can be relatively quick and doesn't necessarily involve a weeks-long death watch.
I've thought about all this several times recently, when I heard Susan Sontag's son, David Rieff, interviewed by Terry Gross, and when I read the review in the current New York Review of Books of Rieff's memoir of his mother's death. Sontag, according to Rieff, clung so fiercely to life that she insisted on an extremely painful bone marrow transplant, even though doctors said it was extremely unlikely to work, to treat her third cancer, a rare blood disease. I had previously had enormous respect for Sontag; her book, Lllness as Metaphor, came out just after I had Hodgkin's disease, and I thought it was very wise. But when I heard about Sontag's insistence (from the time she was 16, apparently) that she would not allow death to shorten her life, I was appalled at her arrogance. Not as a sixteen-year-old; most teenagers believe they're immortal, after all. But it seems to me that a highly-intelligent woman of 70 who had already survived two cancers (breast and uterine) should understand that no one lives forever; that she has been granted more than twenty years (since her first, very serious, cancer) because of her privileged economic and social status; and that gratitude and acceptance, rather than arrogance, are more appropriate responses. Though I suppose that doesn't have much to do with intelligence.
Sontag was apparently so focused on living that she refused to talk about death, or to accept that she was dying; something that continues, two years after her death, to upset her son, who felt he could only support her wishes, rather than tell her the truth about her situation. This, obviously, is so different from my attitude that it's almost incomprehensible to me. And I'm grateful both for the blog technology and for the forbearance of my readers that I am able to talk, or at least write, about the truth as I see it.
No, I'm not afraid. I'm also not dying at the moment! I'm waiting for the taxi to start me on my vacation with the sun and the pretty fishes. Back in a week or so.....
Thursday, January 17, 2008
Snorkeling and Chemotherapy
First, a reminder: If you want to be notified whenever I've added a post to this blog, scroll all the way down to the bottom of this page and click on "subscribe." Don't worry--you won't fry your computer, whatever you click on! Experiment a little, if you're confused by the lingo.
Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.
So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.
Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.
Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)
I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.
The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.
As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.
Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.
The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.
On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.
By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!
The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.
So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.
If you have questions about all this, post a comment, and I'll be happy to answer, if I can.
Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.
So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.
Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.
Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)
I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.
The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.
As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.
Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.
The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.
On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.
By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!
The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.
So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.
If you have questions about all this, post a comment, and I'll be happy to answer, if I can.
Tuesday, January 8, 2008
Visits and Visitors
Just got back at midnight last night from a vacation with my sons and Jed's significant other at Zion National Park and in Los Angeles. A terrific nine or ten days' respite from thinking of myself as a "sickie." No doctors; no chemo infusions. Just beautiful scenery (we also drove through Bryce Canyon); some short hikes; a truly spectacular Cirque du Soleil show in Las Vegas; and lots of good conversation and love. In LA, I saw my long-time (since college) friends Claire and Deborah, and also my sister Paula who, like Deborah, lives in San Diego County. They drove something like six hours round-trip on very rainy freeways to spend a few hours with me.
I have been trying to get away from Madison for at least a long weekend every month. I really do feel much more like a normal person when I'm not in the shadow of the hospital (almost literally, since I live within walking distance). And of course it's wonderful to see my kids, my sisters, old friends, and I'm happy that they really want to see me. But on this trip, I became very aware of the complicated balancing act required to satisfy other people's desire to spend time with me, and my desire to live my life as normally as possible for as long as possible.
Since the beginning of last summer, I have had a lot of visitors: friends and family who have come to Madison for as little as a few days or as much as a week. They want to spend time with me, and of course when they're here, I want to spend time with them. But when you combine the time I have spent traveling and the time I've had visitors, and then add in the days I'm out of commission because of chemo and its effects, there are not a lot of consecutive days left to live my normal Madison life: spending time with Madison friends, practicing cello, writing.... For me, that's very frustrating. It's not just that I like solitude (which I do). Every visitor, and every day I spend with visitors, is a reminder that my life is not "normal." Much as I love all these people, I hate the reminders.
When we were at Zion, my older son, who just finished his first semester of law school, told me that he was taking a leave from school so that he could spend more time hanging out with me. He has what seem to me legitimate academic goals that he wants to accomplish during the next several months, and his professors agree that taking the time away from classes to write a paper that could be published is a good idea. The school will welcome him back when he returns, and will hold his scholarship for him. So the idea that he would take a leave was not hard for me to accept.
But then he said he'd come to Madison to hang out with me for three weeks each month! I was, I'm afraid, very visibly and vocally appalled. I'm flattered and touched by the idea that my son wants to spend more time with me. I appreciate his desire to be helpful, though at the moment my minimal needs for help (with shoveling snow or preparing for a party) are easily met by friends and neighbors. And I understand that it's important for him now, and will be important for him when, eventually, I die, to have spent time with me--though in my experience, one never feels one has had enough time with people who are no longer around. Still, how do I reconcile all this appreciation and understanding of his needs with my own needs and desires for solitude and for not perceiving myself as a "sickie." How can I even pretend my life is normal if my grown son leaves his home and his girlfriend 2,000 miles away to hang out with me three weeks out of every month?
Well, we compromised. This month he will come for a week or ten days, and he will do his work and I will live my ordinary Madison life, and we'll have dinner together occasionally, or take in a movie, or go for a walk, and we'll see how it goes. But it feels like a balancing act that the Cirque du Soleil might accomplish more successfully than I.
By chance, when I went to the airport this afternoon to pick up my fog-delayed suitcase, I met an old friend, a retired attorney who's close to 80, who'd just returned from spending a month in Seattle where his daughter has started treatment for ovarian cancer. When I told him about my son's desire to spend three weeks a month with me, my friend strongly urged me to let him do it. He didn't change my mind. But I was interested in his reaction, and I'd really welcome your comments and reflections on this conundrum.
I have been trying to get away from Madison for at least a long weekend every month. I really do feel much more like a normal person when I'm not in the shadow of the hospital (almost literally, since I live within walking distance). And of course it's wonderful to see my kids, my sisters, old friends, and I'm happy that they really want to see me. But on this trip, I became very aware of the complicated balancing act required to satisfy other people's desire to spend time with me, and my desire to live my life as normally as possible for as long as possible.
Since the beginning of last summer, I have had a lot of visitors: friends and family who have come to Madison for as little as a few days or as much as a week. They want to spend time with me, and of course when they're here, I want to spend time with them. But when you combine the time I have spent traveling and the time I've had visitors, and then add in the days I'm out of commission because of chemo and its effects, there are not a lot of consecutive days left to live my normal Madison life: spending time with Madison friends, practicing cello, writing.... For me, that's very frustrating. It's not just that I like solitude (which I do). Every visitor, and every day I spend with visitors, is a reminder that my life is not "normal." Much as I love all these people, I hate the reminders.
When we were at Zion, my older son, who just finished his first semester of law school, told me that he was taking a leave from school so that he could spend more time hanging out with me. He has what seem to me legitimate academic goals that he wants to accomplish during the next several months, and his professors agree that taking the time away from classes to write a paper that could be published is a good idea. The school will welcome him back when he returns, and will hold his scholarship for him. So the idea that he would take a leave was not hard for me to accept.
But then he said he'd come to Madison to hang out with me for three weeks each month! I was, I'm afraid, very visibly and vocally appalled. I'm flattered and touched by the idea that my son wants to spend more time with me. I appreciate his desire to be helpful, though at the moment my minimal needs for help (with shoveling snow or preparing for a party) are easily met by friends and neighbors. And I understand that it's important for him now, and will be important for him when, eventually, I die, to have spent time with me--though in my experience, one never feels one has had enough time with people who are no longer around. Still, how do I reconcile all this appreciation and understanding of his needs with my own needs and desires for solitude and for not perceiving myself as a "sickie." How can I even pretend my life is normal if my grown son leaves his home and his girlfriend 2,000 miles away to hang out with me three weeks out of every month?
Well, we compromised. This month he will come for a week or ten days, and he will do his work and I will live my ordinary Madison life, and we'll have dinner together occasionally, or take in a movie, or go for a walk, and we'll see how it goes. But it feels like a balancing act that the Cirque du Soleil might accomplish more successfully than I.
By chance, when I went to the airport this afternoon to pick up my fog-delayed suitcase, I met an old friend, a retired attorney who's close to 80, who'd just returned from spending a month in Seattle where his daughter has started treatment for ovarian cancer. When I told him about my son's desire to spend three weeks a month with me, my friend strongly urged me to let him do it. He didn't change my mind. But I was interested in his reaction, and I'd really welcome your comments and reflections on this conundrum.
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