(Note: I may not be able to post blog entries of much substance between now and about August 1. To learn why, see end of this entry.)
I know, I know-- you're probably more interested in my health and activities than in the arcane political jockeying among progressives on issues of health care reform. So I'm not going to go into detail on the politics, but just give you a heads-up on what apparently is going on. It's the old debate about different means to an agreed-on end, applied to a "new" old issue. To be specific: do we insist on pushing for a single-payer plan, or do we assume that's not going to happen in the near future, so we support incremental change that somehow mixes existing private insurance plans with some sort of subsidized insurance for people who can't afford or aren't eligible for private coverage?
Here's how the debate seems to be shaping up:
Rep. John Conyers has sponsored single payer legislation in Congress. HR 676, the U.S. National Health Insurance Act (also sometimes referred to as "Medicare for all") was endorsed in late June by the U.S. Conference of Mayors, and has received more media attention than one might expect for a "radical" proposal.
And you may have heard about the HCAN campaign that's ramping up. HCAN is an acronym for Health Care for America Now, a $40 million organizing and media campaign sponsored by a fairly broad coalition including unions, Move On, Planned Parenthood, and others. Maybe AARP? I haven't checked on that. According to a Move On fundraising plea, the campaign will fund 100 organizers "on the ground" (which doesn't seem like very many, considering the size of the country), plus TV and radio ads, etc. HCAN advocates an incremental, "any reform is better than what we have" approach.
You can find out more about both these approaches by Googling HR 676 and HCAN. I'd be interested in knowing which strategy you favor.
And now a few things about me: I've been home for a week now, and am getting ready for my next trip, a week plus a couple of days on Michigan's Upper Peninsula. I'm going with five friends who are signed up for a bike tour sponsored by the League of Michigan Bicyclists; they'll do a 6-day loop, including one rest day, starting at St. Ignace (near the famous Mackinac Bridge) and heading first north and a little east, and then west and south. I'm signed up as a "non-rider," since there's no way I can ride 60 miles a day, and will spend time entertaining myself while the others are riding, but eating breakfasts and dinners with them and also hanging out with them in the evenings and on the rest day and the day before the ride starts, when I think we'll go to Mackinac Island.
I'm planning to do some sight-seeing (the tour organizers promise a special sight-filled route for non-riders) and also, I think, will be proof-reading Facing Fear, which is supposed to go to the printer in early August. And I'm taking my bike; I hope that I will be able to ride a little of the route in reverse from the end each day, and meet my friends as they're coming into town.
As I said above, my blog posting may be a little spotty, or even non-existent, between now and late July or early August. Next Monday (7/21) I will be traveling between St. Ignace and De Tour Village, Michigan. If there's a library with internet connection for non-natives in the Village, and if I have time, I'll post something Monday, but it might be more likely to find both time and internet on Tuesday or Wednesday, when we'll be in Sault Ste. Marie.
I'm not taking my computer with me; in fact, my current laptop will spend my time in Michigan with the people who are selling me a new laptop, so they can move stuff from this hard drive to the new one. I'll probably pick up the new computer on Monday 7/28, and it should be ready to go--except for my wireless connection, which I'll have to re-install. So maybe I'll be able to post on 7/28, and maybe not. You know how it is with new technology.... No promises! Except that my sons, who lobbied heavily for replacing this admittedly cranky four-year-old beast, and who even made the initial phone calls to the vendor, assure me that I will be thrilled with the new laptop. Even though it will be a PC, not a Mac.
Now a word about my health: it's terrific to be off chemo! I can tell the neuropathy is getting better because my balance is much improved. And so's my digestion. Not to mention my mood. And I think so far the tumors are behaving themselves.
One more thing-- for those of you in Chicago, or inclined to visit Chicago for a day, I will be reading at the Peggy Notebaert Nature Museum in Lincoln Park on Tuesday, August 5, at 6:30 PM. The reading is part of the Chicago Public Library's Read Green, Live Green program; I and other contributors will be reading from the anthology Fresh Water: Women Writing on the Great Lakes.
Monday, July 14, 2008
Tuesday, July 8, 2008
Rationing Health Care
I'm back from a lovely weekend, visiting my sister Susie and her husband Bob in Takoma Park, Maryland, and taking in the fireworks display in our nation's capital--a little muted by low-lying clouds (aka light rain), but maybe that's some sort of metaphor for our times.
Susie and I spent much of my visit viewing reels and reels of 8 mm movies, taken by our father, Alex, between about 1950 and 1966. So many birthday parties (there are four of us Strasser girls) and miniature train rides and pony rides at the Pittsburgh Children's Zoo and children (including some totally unrelated Dutch kids in Amsterdam) on swings! And a lot of really, really bad photography. This is not art; more a kind of obligatory "this is what fathers do" documentation of mid-twentieth-century family life.
But thinking about Alex, combined with reading a long article about the high--perhaps socially indefensible--cost of a new cancer drug in Sunday's New York Times, led me to muse, once again, about the cost of health care. More specifically, on the question of how much extension of whose life is worth how much money.
When my dad was in the hospital in Madison in the fall of 2002, being treated (unsuccessfully) for a staph infection that he contracted after hip surgery, he was quite adamant that I should read a particular book that presented the argument for rationing health care, spending more on pregnant woman, infants, and toddlers and less--much less--on the elderly. The book pointed out that, in our present system, by far the lion's share of expenditures goes toward keeping old people alive for the last six to twelve months of their lives.
My father, who was 84 at the time, was quite explicit about his belief that the focus on keeping old people alive was an abomination. He, himself, had a living will and a healthcare power of attorney, and made it clear to his wife and his daughters that he did not want any extraordinary measures taken to prolong his life. When he was trying to refuse a diagnostic CT scan on the grounds that it was too expensive a procedure for a man his age, I remember saying, "That may be good social policy, but we're not talking policy reform here. We're talking about you." He finally gave in.
(Despite his resistance to extreme--or even not so extreme--medical treatments, and his careful advance directives, he was subjected to resuscitation efforts that left him severely disabled after his heart stopped and his brain was deprived of oxygen for more than fifteen minutes. We had to argue with the hospital to withdraw life support--an argument that, ironically, we won only after I described to the chair of the ethics board how intensely my father insisted that I read the book about rationing health care. But that's another story.)
The Times article reminded me of that argument about the CT scan, and about the different perspectives that even a single person (like me) might have about rationing health care. The article raised the question of whether it makes sense to spend as much as $50,000 or $100,000 for a cancer treatment that may only extend a patient's survival by four months. In the scheme of things, four months is a tiny amount of time, a tiny fraction of a normal life span. Like Alex, I really do think it makes much more sense to invest that kind of money in prenatal and early childhood care--and even on young adults who can expect many more years of productive life--than on terminal cancer patients. But as a cancer patient who has now outlived her prognosis by four months thanks to very, very expensive treatments paid for by insurance and by the American taxpayers who fund Medicare, I can tell you that every good month--heck, every good day--is precious. (So thanks, you taxpayers out there.) And even if I didn't have cancer, I and many of my friends have already passed the arbitrary magic number--60, or 62, or 65--that in many rationing proposals would make us ineligible for open heart surgery or other very expensive treatments. That's a much more sobering reminder of mortality than becoming eligible for Social Security or Medicare.
In the long run, I suspect that rationing health care may be necessary. (In fact, one can and probably should argue that rationing exists now, determined by the market: poor and uninsured people don't get treated; wealthy and insured people do.) But "official" rationing, and the difficult decisions and heartache it will necessitate, can at least be delayed if we take a hard look at cutting health care costs. I recommend the Times article (available here), which explains some of the reasons for the outrageous cost of cancer drugs, as one place to start educating yourself on this issue. And then you might investigate the cost-saving advantages of a single-payer insurance system. They're considerable.
Susie and I spent much of my visit viewing reels and reels of 8 mm movies, taken by our father, Alex, between about 1950 and 1966. So many birthday parties (there are four of us Strasser girls) and miniature train rides and pony rides at the Pittsburgh Children's Zoo and children (including some totally unrelated Dutch kids in Amsterdam) on swings! And a lot of really, really bad photography. This is not art; more a kind of obligatory "this is what fathers do" documentation of mid-twentieth-century family life.
But thinking about Alex, combined with reading a long article about the high--perhaps socially indefensible--cost of a new cancer drug in Sunday's New York Times, led me to muse, once again, about the cost of health care. More specifically, on the question of how much extension of whose life is worth how much money.
When my dad was in the hospital in Madison in the fall of 2002, being treated (unsuccessfully) for a staph infection that he contracted after hip surgery, he was quite adamant that I should read a particular book that presented the argument for rationing health care, spending more on pregnant woman, infants, and toddlers and less--much less--on the elderly. The book pointed out that, in our present system, by far the lion's share of expenditures goes toward keeping old people alive for the last six to twelve months of their lives.
My father, who was 84 at the time, was quite explicit about his belief that the focus on keeping old people alive was an abomination. He, himself, had a living will and a healthcare power of attorney, and made it clear to his wife and his daughters that he did not want any extraordinary measures taken to prolong his life. When he was trying to refuse a diagnostic CT scan on the grounds that it was too expensive a procedure for a man his age, I remember saying, "That may be good social policy, but we're not talking policy reform here. We're talking about you." He finally gave in.
(Despite his resistance to extreme--or even not so extreme--medical treatments, and his careful advance directives, he was subjected to resuscitation efforts that left him severely disabled after his heart stopped and his brain was deprived of oxygen for more than fifteen minutes. We had to argue with the hospital to withdraw life support--an argument that, ironically, we won only after I described to the chair of the ethics board how intensely my father insisted that I read the book about rationing health care. But that's another story.)
The Times article reminded me of that argument about the CT scan, and about the different perspectives that even a single person (like me) might have about rationing health care. The article raised the question of whether it makes sense to spend as much as $50,000 or $100,000 for a cancer treatment that may only extend a patient's survival by four months. In the scheme of things, four months is a tiny amount of time, a tiny fraction of a normal life span. Like Alex, I really do think it makes much more sense to invest that kind of money in prenatal and early childhood care--and even on young adults who can expect many more years of productive life--than on terminal cancer patients. But as a cancer patient who has now outlived her prognosis by four months thanks to very, very expensive treatments paid for by insurance and by the American taxpayers who fund Medicare, I can tell you that every good month--heck, every good day--is precious. (So thanks, you taxpayers out there.) And even if I didn't have cancer, I and many of my friends have already passed the arbitrary magic number--60, or 62, or 65--that in many rationing proposals would make us ineligible for open heart surgery or other very expensive treatments. That's a much more sobering reminder of mortality than becoming eligible for Social Security or Medicare.
In the long run, I suspect that rationing health care may be necessary. (In fact, one can and probably should argue that rationing exists now, determined by the market: poor and uninsured people don't get treated; wealthy and insured people do.) But "official" rationing, and the difficult decisions and heartache it will necessitate, can at least be delayed if we take a hard look at cutting health care costs. I recommend the Times article (available here), which explains some of the reasons for the outrageous cost of cancer drugs, as one place to start educating yourself on this issue. And then you might investigate the cost-saving advantages of a single-payer insurance system. They're considerable.
Tuesday, July 1, 2008
Better Late Than....
Well, so far two people have remarked on the fact that I didn't post my regular Monday blog entry yesterday. It's great, really, to know that you're out there reading! And, some of you, even commenting--though I do wish more of you would do that.
I could say that I was just preparing you for the fact that next week, the blog post will appear on Tuesday, not Monday. (On Monday I'll be returning to Madison after a glorious Fourth of visiting my sister and watching fireworks in DC.) But the truth is, I was just too busy yesterday to get to the blog. In addition to spending most of the morning working out at the gym and then having brunch with Jed and our friend Jim, I was doing a bunch of desk work, picking up copies of th Facing Fear manuscript and delivering them to people who've agreed to write blurbs for the cover, meeting with the book designer to talk about interior and cover designs, and then spending several hours looking at fearful images on various web sites for potential use on the cover. I discovered, in that search, an amazing collection of Arthur Rackham illustrations for Wagner's Ring cycle. None at all appropriate for the cover, but if you're a Rackham afficianado, or just curious, go to the Wikimedia site and search for Rackham.
In the past week, I've run across a couple of articles that provoked me to file them away to share with you. One is an interesting piece in the June 23 issue of The New Yorker addressing the question of whether a computer can ever actually have an intelligent conversation with a person. Two things in the article ("Hello, Hal" by John Seabrook) struck me as especially pertinent to my situation. First, I discovered that there's actually a scientific explanation-- complete with a name, the Lombard effect--for why I find it tiring to talk against loud background noise. We humans unconsciously raise our voices to compensate for ambient sound. Of course, I'm often aware that I won't be heard against, say, the passing bus or truck, or (at a recent party) a salsa band, and I just shut up. (At the party, I whispered a response into a friend's ear when he asked, in the middle of a lively piece, how I was. "I can't talk," I said. Which he already knew.) But often, I'm not even aware that I'm trying to compete. I just know that talking is tiring.
The other salient point in that article really irritated me. After some comments about how dissatisfied many customers are with the speech recognition programs that many companies use ontheir customer service lines in place of touch-tone menus, Seabrook refers to Leopard, Apple's new operating system which responds to voice commands. This, he point out, "is wonderful for people with handicaps and disabilities...." Which I'm sure it is. But I wish he'd been as sensitive to the needs of people who have trouble speaking when he was writing about those speech recognition programs. Last fall, when I needed to call some company (I think it was Northwest Airlines) that offered only this option, the friendly computer could not understand a word I said, and I was so frustrated I came close to crying. Eventually, the computer got frustrated, too, and turned me over to a real person, who also had trouble understanding me. Even though my voice has gotten a lot stronger, I still quail at the thought of conducting business on the phone. Recently, I had to call both a credit card company about a questionable charge, and the UWHealth business office about an invoice question, in the same day-- and when I was able to successfully complete both calls, I felt like I'd accomplished an amazing feat. Two amazing feats, in fact.
On a more positive note, here's some interesting information from a post that appeared recently in the Topeka (KS) Capital-Journal blog (http://blogs.cjonline.com/index.php?entry=7452). The blogger, Bill Roy, a retired physician and former member of Congress, was reporting on a talk by the senior vp and chief medical officer of a Kansas medical center to an audience of retired physicians. The vp, Dr. Kent Palmberg, said he thought eventually the U.S. would "end up with something like Medicare for all." And then he added, "I'm not sure that's all bad. They pay promptly, predictably and adequately, with a minimum of paperwork. That beats costly fighting with scores of insurance companies, plus caring for the many uninsured."
Dr. Roy notes that this attitude is growing among physicians. He writes that "a 2007 study published in the Annals of Internal Medicine...found that 59 percent of physicians in the U.S. support 'government legislation to establish national health insurance,' up 10 percent in five years." Last December, the American College of Physicians endorsed single-payer as "one pathway" to universal coverage. And Dr. Marcia Angell, former editor of the New England Journal of Medicine, says, "There's only one choice for universal health care at a cost we can afford, and that's single payer, Medicare for all."
Please tell this to your Senators and Representatives, and to both Presidential candidates, too! And to every Harry and Louise you meet.
See you next Tuesday. And have a brilliant Fourth....
I could say that I was just preparing you for the fact that next week, the blog post will appear on Tuesday, not Monday. (On Monday I'll be returning to Madison after a glorious Fourth of visiting my sister and watching fireworks in DC.) But the truth is, I was just too busy yesterday to get to the blog. In addition to spending most of the morning working out at the gym and then having brunch with Jed and our friend Jim, I was doing a bunch of desk work, picking up copies of th Facing Fear manuscript and delivering them to people who've agreed to write blurbs for the cover, meeting with the book designer to talk about interior and cover designs, and then spending several hours looking at fearful images on various web sites for potential use on the cover. I discovered, in that search, an amazing collection of Arthur Rackham illustrations for Wagner's Ring cycle. None at all appropriate for the cover, but if you're a Rackham afficianado, or just curious, go to the Wikimedia site and search for Rackham.
In the past week, I've run across a couple of articles that provoked me to file them away to share with you. One is an interesting piece in the June 23 issue of The New Yorker addressing the question of whether a computer can ever actually have an intelligent conversation with a person. Two things in the article ("Hello, Hal" by John Seabrook) struck me as especially pertinent to my situation. First, I discovered that there's actually a scientific explanation-- complete with a name, the Lombard effect--for why I find it tiring to talk against loud background noise. We humans unconsciously raise our voices to compensate for ambient sound. Of course, I'm often aware that I won't be heard against, say, the passing bus or truck, or (at a recent party) a salsa band, and I just shut up. (At the party, I whispered a response into a friend's ear when he asked, in the middle of a lively piece, how I was. "I can't talk," I said. Which he already knew.) But often, I'm not even aware that I'm trying to compete. I just know that talking is tiring.
The other salient point in that article really irritated me. After some comments about how dissatisfied many customers are with the speech recognition programs that many companies use ontheir customer service lines in place of touch-tone menus, Seabrook refers to Leopard, Apple's new operating system which responds to voice commands. This, he point out, "is wonderful for people with handicaps and disabilities...." Which I'm sure it is. But I wish he'd been as sensitive to the needs of people who have trouble speaking when he was writing about those speech recognition programs. Last fall, when I needed to call some company (I think it was Northwest Airlines) that offered only this option, the friendly computer could not understand a word I said, and I was so frustrated I came close to crying. Eventually, the computer got frustrated, too, and turned me over to a real person, who also had trouble understanding me. Even though my voice has gotten a lot stronger, I still quail at the thought of conducting business on the phone. Recently, I had to call both a credit card company about a questionable charge, and the UWHealth business office about an invoice question, in the same day-- and when I was able to successfully complete both calls, I felt like I'd accomplished an amazing feat. Two amazing feats, in fact.
On a more positive note, here's some interesting information from a post that appeared recently in the Topeka (KS) Capital-Journal blog (http://blogs.cjonline.com/index.php?entry=7452). The blogger, Bill Roy, a retired physician and former member of Congress, was reporting on a talk by the senior vp and chief medical officer of a Kansas medical center to an audience of retired physicians. The vp, Dr. Kent Palmberg, said he thought eventually the U.S. would "end up with something like Medicare for all." And then he added, "I'm not sure that's all bad. They pay promptly, predictably and adequately, with a minimum of paperwork. That beats costly fighting with scores of insurance companies, plus caring for the many uninsured."
Dr. Roy notes that this attitude is growing among physicians. He writes that "a 2007 study published in the Annals of Internal Medicine...found that 59 percent of physicians in the U.S. support 'government legislation to establish national health insurance,' up 10 percent in five years." Last December, the American College of Physicians endorsed single-payer as "one pathway" to universal coverage. And Dr. Marcia Angell, former editor of the New England Journal of Medicine, says, "There's only one choice for universal health care at a cost we can afford, and that's single payer, Medicare for all."
Please tell this to your Senators and Representatives, and to both Presidential candidates, too! And to every Harry and Louise you meet.
See you next Tuesday. And have a brilliant Fourth....
Monday, June 23, 2008
Vacation Begins!
I'm writing this at 9 AM on Saturday, June 21--though it won't be posted until Monday, when I'll be in Boston (Somerville, actually), visiting Nate and Meghan. Nate doesn't know it yet (as I'm writing), but I'm planning to leave Madison very early tomorrow morning, arriving at his house in time for his birthday party tomorrow afternoon. As I explained in last Monday's post, in my mind this is almost as much a celebration of my 27 years as a cancer survivor as of Nate's thirtieth birthday.
Speaking of cancer survivors: here's a photo of some of the members of TEAMSurvivor Madison and the TSM dragon boat, which has been moved to Rutabaga's back lot--but has not yet been in the water. The man in the picture holding the dragon head is the boat's builder, Jim Caldwell, who donated hundreds and hundreds of hours to the project, beginning in March. You can get an idea of how big the boat is when you realize that you can't even see all of it in the picture.
So vacation has begun! In about a half hour, I will disconnect from my chemo pump, and with luck, I won't have any more chemo until after Labor Day. And tomorrow will be the first of six trips, big and little, I have planned for the next two months: two to the east coast, two to Chicago, one to the Upper Peninsula of Michigan, and one to the Boundary Waters in northern Minnesota. That one ends with a day at the Dragon Boat Festival in Superior, Wisconsin.
Sounds like a lot of fun. Now, if the tumors will just behave.....
Monday, June 16, 2008
27 years and counting....
Lots of fun this past week: a wonderful bike ride with new TEAMSurvivor friends; paddling practice on the Yahara River; a great party, co-hosted with good friends, to celebrate various people's retirements, pending retirements, and/or resistance to retirement. The last guests left after midnight--and I was sorry to see them go! Who says "seniors" (I guess that's who we are, now) can't party hearty?
And best of all, a meeting with the marketing department at UW Press, where we were encouraged to bring out Facing Fear this fall, instead of next spring. The official publication date will be December 15, but we hope to have books in hand by the time of the Wisconsin Book Festival in mid-October. Of course, this depends on the production process moving smoothly and swiftly, but we have reason to believe that it will. I'll keep you posted!
But what's really been on my mind the past week is my younger son's impending Big Birthday. He'll turn 30 next Sunday. This means I will no longer be able to trust either of my sons. (Those of us who came of age in the '60s understand that we can't trust anyone over 30--ourselves excluded.) But seriously--and much more important--it means that despite having had two cancers, I've seen both my sons into their thirties. They were only 3 and 6 years old when I was diagnosed with Hodgkin's disease in 1981. I didn't spend a lot of time worrying that I wouldn't live to see them grow up--but I'd be lying if I said the thought didn't cross my mind. So here I am, 27 years later, and here they are, all grown up (and then some). Amazing. I feel very lucky. And as I've said before, it's a lot easier for me to cope with the stomach cancer, which was likely caused by the radiation treatments for the Hodgkin's, knowing that the radiation also made it possible for me to raise my sons.
So Nate may be worried about getting old (though he told me the last party he and Meghan hosted didn't break up until 6 AM, so he couldn't be feeling too old!) But I'm thrilled that he's turning 30, and that I'm around to see it happen.
And best of all, a meeting with the marketing department at UW Press, where we were encouraged to bring out Facing Fear this fall, instead of next spring. The official publication date will be December 15, but we hope to have books in hand by the time of the Wisconsin Book Festival in mid-October. Of course, this depends on the production process moving smoothly and swiftly, but we have reason to believe that it will. I'll keep you posted!
But what's really been on my mind the past week is my younger son's impending Big Birthday. He'll turn 30 next Sunday. This means I will no longer be able to trust either of my sons. (Those of us who came of age in the '60s understand that we can't trust anyone over 30--ourselves excluded.) But seriously--and much more important--it means that despite having had two cancers, I've seen both my sons into their thirties. They were only 3 and 6 years old when I was diagnosed with Hodgkin's disease in 1981. I didn't spend a lot of time worrying that I wouldn't live to see them grow up--but I'd be lying if I said the thought didn't cross my mind. So here I am, 27 years later, and here they are, all grown up (and then some). Amazing. I feel very lucky. And as I've said before, it's a lot easier for me to cope with the stomach cancer, which was likely caused by the radiation treatments for the Hodgkin's, knowing that the radiation also made it possible for me to raise my sons.
So Nate may be worried about getting old (though he told me the last party he and Meghan hosted didn't break up until 6 AM, so he couldn't be feeling too old!) But I'm thrilled that he's turning 30, and that I'm around to see it happen.
Monday, June 9, 2008
Dragons
I was trying to decide how to title this post, which--as you'll see--is about a variety of things: a chemo vacation, anxiety, anger, (lack of) control. And about dragon boats, too. So I decided to call it "dragons," and as I typed that into the title box, I realized how apt a title it is for a chronic disease, which drags on, and on, and (hopefully) on.... And which is, or can be, a drag on energy, spirit, etc.
So "dragons" it is.
Last Thursday I saw Dr. Holen, my oncologist, for what we both hope will be the last time until September. I have one more chemo treatment (on June 19), and then I'm on vacation from treatment for the rest of the summer--unless something comes up before then. Dr. Holen warned, "You must be very vigilant about your health." And of course it was last summer, when I was on vacation from chemo, that the tumor attacked my vagus nerve and my voice began to disappear.
I was pretty anxious, going in to the appointment. What if the doctor discovered something going on when he listened to my lungs? What if he ordered a CT scan (which he'd mentioned last time I saw him), and it showed the tumors growing? It seemed entirely possible that all my plans for a summer of fun (including several trips with friends and family) would have to be scrapped.
But they weren't. In fact, Dr. Holen suggested that the next CT scan be in September, rather than this month, precisely because if something nasty showed up, they'd have to treat it, and if it showed up now, that would screw up my summer. Sometimes it's better not to know.... even (or especially) if you're a doctor!
A day or two after this appointment, I had a dream that revealed to me how angry I am at the cancer and my inability to take control of it and banish it from my life. In the dream, I was furious, screaming at the symbolic stand-in for the cancer, "You are so selfish; you don't take my needs into consideration, it's all about you, you, you." Oddly, until this dream, I never realized I was angry about being sick. Sad, yes, but not angry.
But the dream also pointed out that I can (and do) still control some aspects of my life, however small--in the dream, I went to a diner for breakfast when I was hungry because I'd had to rush out of the house without eating--and that means quite a lot. It's really important to do what one can, when one has the ability. Ultimately, none of us is going to be able to walk away from all the dragons!
In fact, this past week I took a big step toward a dragon--a dragon boat, that is. I went to my first training session for the Dragon Boat regatta that will take place on Lake Superior on August 23. (A dragon boat is an elaborately decorated huge canoe-type boat, that holds a crew of about 20 paddlers. The first, and maybe only, one I ever saw was poking around the Capetown, South Africa, harbor, but I think the sport is growing rapidly in popularity, world-wide. The Superior regatta attracts a hundred boats.) I will be part of TeamSurvivor's crew--TeamSurvivor is a group of Madison-area women cancer survivors who do a variety of physical activities through the year. The dragon boat program, which is generously supported by Rutabaga, a local paddle sports shop, involves weekly paddling sessions on the Yahara River. Right now, until our very own dragon boat is completed in mid-July, we train in Moby, a white war canoe on loan from Carl's Paddling (another local shop) that holds about 10-12 paddlers. I was afraid that I wouldn't have the stamina, upper body strength, or aerobic capacity necessary to paddle, and I was delighted to discover that none of that was a problem. And it certainly would have been, six months ago. So all the strength training I've been doing at the gym is really paying off! And I can't wait for the next training session, this Wednesday. It's really wonderful to be out on the water in the early evening.
As for the tumor dragons--I'll just have to trust I can fend them off for another two or three months. Right now, I definitely feel strong enough!
So "dragons" it is.
Last Thursday I saw Dr. Holen, my oncologist, for what we both hope will be the last time until September. I have one more chemo treatment (on June 19), and then I'm on vacation from treatment for the rest of the summer--unless something comes up before then. Dr. Holen warned, "You must be very vigilant about your health." And of course it was last summer, when I was on vacation from chemo, that the tumor attacked my vagus nerve and my voice began to disappear.
I was pretty anxious, going in to the appointment. What if the doctor discovered something going on when he listened to my lungs? What if he ordered a CT scan (which he'd mentioned last time I saw him), and it showed the tumors growing? It seemed entirely possible that all my plans for a summer of fun (including several trips with friends and family) would have to be scrapped.
But they weren't. In fact, Dr. Holen suggested that the next CT scan be in September, rather than this month, precisely because if something nasty showed up, they'd have to treat it, and if it showed up now, that would screw up my summer. Sometimes it's better not to know.... even (or especially) if you're a doctor!
A day or two after this appointment, I had a dream that revealed to me how angry I am at the cancer and my inability to take control of it and banish it from my life. In the dream, I was furious, screaming at the symbolic stand-in for the cancer, "You are so selfish; you don't take my needs into consideration, it's all about you, you, you." Oddly, until this dream, I never realized I was angry about being sick. Sad, yes, but not angry.
But the dream also pointed out that I can (and do) still control some aspects of my life, however small--in the dream, I went to a diner for breakfast when I was hungry because I'd had to rush out of the house without eating--and that means quite a lot. It's really important to do what one can, when one has the ability. Ultimately, none of us is going to be able to walk away from all the dragons!
In fact, this past week I took a big step toward a dragon--a dragon boat, that is. I went to my first training session for the Dragon Boat regatta that will take place on Lake Superior on August 23. (A dragon boat is an elaborately decorated huge canoe-type boat, that holds a crew of about 20 paddlers. The first, and maybe only, one I ever saw was poking around the Capetown, South Africa, harbor, but I think the sport is growing rapidly in popularity, world-wide. The Superior regatta attracts a hundred boats.) I will be part of TeamSurvivor's crew--TeamSurvivor is a group of Madison-area women cancer survivors who do a variety of physical activities through the year. The dragon boat program, which is generously supported by Rutabaga, a local paddle sports shop, involves weekly paddling sessions on the Yahara River. Right now, until our very own dragon boat is completed in mid-July, we train in Moby, a white war canoe on loan from Carl's Paddling (another local shop) that holds about 10-12 paddlers. I was afraid that I wouldn't have the stamina, upper body strength, or aerobic capacity necessary to paddle, and I was delighted to discover that none of that was a problem. And it certainly would have been, six months ago. So all the strength training I've been doing at the gym is really paying off! And I can't wait for the next training session, this Wednesday. It's really wonderful to be out on the water in the early evening.
As for the tumor dragons--I'll just have to trust I can fend them off for another two or three months. Right now, I definitely feel strong enough!
Monday, June 2, 2008
Poetry Camp
I'm back from Poetry Camp, the class Robin Chapman and I teach at The Clearing, a wonderful adult education center in Door County, Wisconsin. (Door County is the "thumb" of Wisconsin, a peninsula extending into Lake Michigan.) The Clearing, which was started in the late 1920s by Jens Jensen, a Dane who emigrated to Chicago and became a well-known and influential landscape architect, is modeled on the Danish Folk School idea. He conceived it, originally, as a place to train young landscape architects, much the way Frank Lloyd Wright conceived of Taliesin as a hands-on school for architects. The summer classes at The Clearing these days range from the arts and crafts (writing, water-color painting, glass fusing, photography, weaving, woodworking, etc.) to nature studies (bird watching, plant identification). And more. Check out their catalog on line!
The Clearing's grounds are beautiful--over 100 acres on the Green Bay (western) shore of the peninsula, close to the very tip. The view is much the same as that from my former mother-in-law's cottage, which is just a bit to the south on the shore path. But the grounds, of course, are much more extensive, and include open meadows as well as woods, which this past week were crowded with trillium. The season is about three weeks behind Madison's--it was fun to watch the early spring unfold again as we drove north--and it has been a very cold spring up north, as well as here, so the yellow lady slippers, lovely orchids which usually have appeared en masse by the time we're in Door County (we teach the same week each year), were just beginning to come out as we left. Most of the week was quite chilly, though on Thursday, the temperature climbed above 60 and the sun was warm, so I headed off to the east side of the peninsula and lay on the sand beach, reading, and wearing only a turtleneck and jeans (no fleece) for about an hour and a half. Heaven!
Poetry Camp itself was wonderful: small (there had been several cancellations due to illness), but full of enthusiastic poets whose writing clearly improved over the week. Robin and I do all the exercises along with the students, so I ended up with a few poems that might even have a life beyond camp. One of the advantages of being at a retreat with artists from other genres is a kind of cross-fertilization that goes on, and a Sudoku-inspired quilt, pieced by an independent study resident (the wife of one of the Photoshop class instructors), found its way into one of my poems, much to my surprise.
I'm somewhat reluctant to post the poem (or any unpublished poem) on my blog, since one interpretation of the "rules" of poetry says that posting on the internet constitutes publication and precludes any appearance in a print journal. (And in response to Matthew, who asked in a comment why not self-publish, I have to say that for me there's a constant tension between the desire to have my work "out there" for others to read, and the desire for acknowledgment and acceptance of that work by editors and other gate-keepers of the poetry community, and I generally have resolved that tension in favor of professional validation.)
But I don't want to be a tease, either-- so here's the poem:
Sudoku
Such a bore--digits, no words,
pure exercise of logic and, since
I never cared enough to advance
beyond the easy ones
just a routine of trial-by-error
penciling-in of tiny numbers
in empty squares, erasures,
crossings-out.
But Carol's Sudoku quilt!
Three rows of three squares each,
no color repeated in any column
or row. Nothing to solve
except the problem of creativity:
how one perceives
without either numbers or words.
The Clearing's grounds are beautiful--over 100 acres on the Green Bay (western) shore of the peninsula, close to the very tip. The view is much the same as that from my former mother-in-law's cottage, which is just a bit to the south on the shore path. But the grounds, of course, are much more extensive, and include open meadows as well as woods, which this past week were crowded with trillium. The season is about three weeks behind Madison's--it was fun to watch the early spring unfold again as we drove north--and it has been a very cold spring up north, as well as here, so the yellow lady slippers, lovely orchids which usually have appeared en masse by the time we're in Door County (we teach the same week each year), were just beginning to come out as we left. Most of the week was quite chilly, though on Thursday, the temperature climbed above 60 and the sun was warm, so I headed off to the east side of the peninsula and lay on the sand beach, reading, and wearing only a turtleneck and jeans (no fleece) for about an hour and a half. Heaven!
Poetry Camp itself was wonderful: small (there had been several cancellations due to illness), but full of enthusiastic poets whose writing clearly improved over the week. Robin and I do all the exercises along with the students, so I ended up with a few poems that might even have a life beyond camp. One of the advantages of being at a retreat with artists from other genres is a kind of cross-fertilization that goes on, and a Sudoku-inspired quilt, pieced by an independent study resident (the wife of one of the Photoshop class instructors), found its way into one of my poems, much to my surprise.
I'm somewhat reluctant to post the poem (or any unpublished poem) on my blog, since one interpretation of the "rules" of poetry says that posting on the internet constitutes publication and precludes any appearance in a print journal. (And in response to Matthew, who asked in a comment why not self-publish, I have to say that for me there's a constant tension between the desire to have my work "out there" for others to read, and the desire for acknowledgment and acceptance of that work by editors and other gate-keepers of the poetry community, and I generally have resolved that tension in favor of professional validation.)
But I don't want to be a tease, either-- so here's the poem:
Sudoku
Such a bore--digits, no words,
pure exercise of logic and, since
I never cared enough to advance
beyond the easy ones
just a routine of trial-by-error
penciling-in of tiny numbers
in empty squares, erasures,
crossings-out.
But Carol's Sudoku quilt!
Three rows of three squares each,
no color repeated in any column
or row. Nothing to solve
except the problem of creativity:
how one perceives
without either numbers or words.
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