Early last week, I happened to be driving into my garage, half-listening to WHA, our local public radio station, when Larry Meiller, host of one of the talk shows, announced his guest for the hour. It was Kyle Holen, my oncologist; they were going to talk about the relationship between drug companies and doctors. Of course, I was interested, and as soon as I got into the house, I turned the radio on.
Now, I don't discuss politics during my doctors' appointments. (How many people do?) So I was more than mildly surprised, when a caller asked Dr. Holen why drugs are so expensive, and he replied, "Because in this country, unlike Canada, there are no cost controls." He'd just explained that oxalyplatin, the drug I happen to be on, costs $14,000 a month. I already knew this (as I mentioned in an earlier blog post), but what I didn't know is that oxalyplatin is, at least for Dr. Holen, the drug of first choice for colon cancer patients. There are oodles more cases of colon cancer than stomach cancer in the United States, and $14,000/month treatments for all of those patients must be a hefty contribution to the overall cost of health care, or at least of cancer care.
Dr. Holen went on to explain that in countries with single-payer health care systems, the single payer--that is, the government--is able to use its buying power to negotiate drug prices with the drug companies. Here, however, there are so many clinics, pharmacies, and insurance companies that no one has the power to negotiate prices--and the difficulty of getting all these players to work together and coordinate some sort of price negotiation is pretty much insurmountable.
I would have been thrilled to hear any doctor say this on public radio, but I was particularly pleased that it was my doctor advocating a single-payer health care system. I already liked the guy--he has, after all, kept me alive for three years--but this was extraordinary. A doctor who not only has good (by my standards) politics, but is willing to go public with his opinions!
And then someone else called in to ask if it was true that doctors get all sorts of freebies from drug sales reps. Yes, Dr. Holen said, although he added that he was careful not to accept so much as a pencil from a drug company. He made it clear that even though many doctors insist that free trips and free lunches don't influence their prescription practices, this was unlikely. Why would drug companies spend many millions on this sales technique, if it was ineffective? Dr. Holen described a clinic (outside Madison) where he sees patients once a month or so. At this clinic, lunch is provided daily by drug companies! On the days he's there, however, the other staff has agreed to have a potluck. "I like to think that some day they'll decide to have potlucks even when I'm not there," he said.
As a follow-up, a listener called in to suggest that people might be interested in looking at a website: www.nofreelunch.org. I hadn't heard of the organization, which is focused on breaking physicians' "drug company dependence" by providing arguments and evidence for the link between freebies (including free drug samples) and prescription practices. But Dr. Holen had, and said he contributed to the organization; and then he suggested people might also like to look at the site for Physicians for a National Health Program (www.pnhp.org). PNHP advocates for a universal, single-payer health care system.
These are both great sites. And if you're in Wisconsin, you might want to check out the site of the Coalition for Wisconsin Health, www.WisconsinHealth.org, an organization for which I volunteer. CWH is an affiliate of PNHP; its long-term goal is a single-payer system, but the coalition of over 60 health and social justice organizations understands that this goal may have to be achieved through small, shorter-term, steps, and it has been a strong advocate for the Healthy Wisconsin plan presented by Democrats in the state legislature in the past year.
CWH is also beginning a new state-wide project, Share Your Story. We're hoping that people with horror stories about health insurance, and also with good stories about the benefits of government programs like Badger Care (in Wisconsin) and Medicaid, will let us know that they're willing to take their stories public through the media. We'll interview these people, get their stories, and create a data base that can be accessed by reporters state-wide who are looking for real people with a personal interest in the health care policy debate. If you happen to know of Wisconsin residents with stories to tell, let me know, and I'll pass the information along!
And I really encourage all you readers to comment on, or ask questions about, the economics and politics of single-payer health insurance.
Monday, March 17, 2008
Monday, March 10, 2008
Travel
This past week, I discovered a new way of thinking about my health: assessing my desire to get out of town! Last October, when I was having a lot of trouble breathing, and more trouble than I now have just talking--when I was spending so much time in various clinics that I felt like a professional patient--I decided that leaving Madison for a few days a month was really essential. It made me feel much better to be someplace where I had no doctors' appointments, and where I could at least pretend that I was "normal," not a sickie. So I plotted my escapes, and made them--to DC and Boston, Zion National Park and Los Angeles, the Virgin Islands, Arizona....
But this past week, when I was thinking about another trip east in early April, I realized I'd done enough traveling. The trips themselves have all been great, but each one requires at least a few days of getting ready to go and then catching up on mail, email, errands, etc. when I get back. And I realized that I've been out of town at least five days a month every month since August. (And although I think I was here most of July, I know I was gone for at least five days each last June, May, April....) When I added all that time up, combined with the preparation and catching up times, and took into account the four days/month I'm pretty much out of commission because of chemotherapy, it suddenly became clear why I never get anything accomplished around here! And as my energy slowly returns, I really do have the desire to accomplish something (though I couldn't say what, other than organizing some files and writing some dates in photo albums) rather than be on perpetual vacation! So I take it as a sign of good health that I don't want to go anywhere, at least until the end of May, when Robin Chapman and I will be teaching our class at The Clearing in Door County.
Of course, it could just be a sign that winter seems to be losing its relentless grip, and the temperatures in Madison this week are predicted to go into the high 30s, and maybe even 40s!
And on March 21, after my next CT scan, Dr. Holen and I will figure out if I can take a vacation from chemo this summer, and when-- and you may be sure that if I'm let off of that tether, I won't be hanging around here for the entire time!
In the meantime, I'm happy just to stay in Madison and watch the snow and ice gradually disappear.
But this past week, when I was thinking about another trip east in early April, I realized I'd done enough traveling. The trips themselves have all been great, but each one requires at least a few days of getting ready to go and then catching up on mail, email, errands, etc. when I get back. And I realized that I've been out of town at least five days a month every month since August. (And although I think I was here most of July, I know I was gone for at least five days each last June, May, April....) When I added all that time up, combined with the preparation and catching up times, and took into account the four days/month I'm pretty much out of commission because of chemotherapy, it suddenly became clear why I never get anything accomplished around here! And as my energy slowly returns, I really do have the desire to accomplish something (though I couldn't say what, other than organizing some files and writing some dates in photo albums) rather than be on perpetual vacation! So I take it as a sign of good health that I don't want to go anywhere, at least until the end of May, when Robin Chapman and I will be teaching our class at The Clearing in Door County.
Of course, it could just be a sign that winter seems to be losing its relentless grip, and the temperatures in Madison this week are predicted to go into the high 30s, and maybe even 40s!
And on March 21, after my next CT scan, Dr. Holen and I will figure out if I can take a vacation from chemo this summer, and when-- and you may be sure that if I'm let off of that tether, I won't be hanging around here for the entire time!
In the meantime, I'm happy just to stay in Madison and watch the snow and ice gradually disappear.
Tuesday, March 4, 2008
Horses!
I came back from Arizona last night, just to see if there was still snow on the ground in Wisconsin, and sure enough, there it was. I have to confess that I signed up for the equine retreat at Sunstone, a healing center for cancer survivors on the edge of Tucson, mostly because of the weather. When I left Madison on Wednesday, it was 10 degrees Fahrenheit. And the first full day in Arizona, basking in the sun and even seeking shade when the afternoon temperature climbed toward 80, I started thinking that maybe I really should move someplace warm. Not Arizona, but maybe LA? Not a very practical or sensible idea, but oh, so tempting.
I discovered, though, flying back yesterday that even I can't live someplace for 31 years without getting attached to it. The sky was clear as we flew over Minnesota and approached the Mississippi River, which we crossed right at the confluence with the Wisconsin River. There was (of course) snow on the ground, and because it was late afternoon, the shadows really defined the topography. We paralleled the Wisconsin, heading east, until it took off to the north, and then we flew over all three of Madison's lakes, as well as the isthmus with the state capitol dome shining gold in the setting sun--it was a spectacular flight. And as soon as we crossed the Mississippi, the refrain from an old song, "The Wisconsin That I Love," came, unbidden, into my head, and played over and over until we landed. I guess I won't be moving.
But as a result of the weekend at Sunstone, I hope to be adding two activities to my schedule: returning to a qi gong class, and doing something with horses, perhaps volunteering at a nearby stable that offers equine therapy to people with disabilities. I discovered that I love to be near horses, and would love to learn to work with them, discovering more about how they sense people's energy, and how I can use my energy to make them respond as I wish.
If there was a theme to the retreat, I think it could be described as "intention." We didn't ride the horses (because of liability issues), but performed several exercises with them, learning how to make them turn left and right without touching them, how to get them to jump over a low barrier and to walk over a pipe lying on the ground, how to get them to move to the rail of the round pen and then walk, trot, and lope (gallop) in a particular direction around the pen (clockwise or counter-clockwise), always signaling our intent by changing the size and direction of our "energy bubble." At the end of this last exercise, we stood in the middle of the pen, calmed ourselves down and quieted our energy, which attracted the horse, because horses, being prey animals, like calm places. I was really good at this (it's a lot easier for me to be calm than to make my energy large and compelling enough to get the horse to lope) and the horse, whose name was Romeo, came right up to me and put his head on my shoulder and relaxed. I fell immediately in love. Makes me feel like a 12-year-old girl!
The equine exercises were especially emotional for several participants, some of whom had spent a lot of time with horses, or with a horse they owned, as young people, and who were suddenly put back in touch with their younger selves, whom they'd abandoned or forgotten, and for others who were afraid of horses, and discovered that they really could face and even draw hope and have affection for and control something much bigger than themselves. (Yes, the horse in those cases was a clear metaphor for cancer.) I haven't had much previous experience with horses--I rode with a friend several times in the year or two after I graduated from college, and I horse-packed into the Tetons with my kids and my sister Paula in 1987--and I'm not afraid of horses. Also, I haven't had much problem with intention since the mid-1980s, after I completed treatment for Hodgkin's disease and determined (after a lot of agonizing) to leave my marriage. But I still felt the exercises as powerful; I enjoyed learning to manipulate my energy field; and I wanted much more of that sort of experience.
The retreat also included short introductions to various kinds of meditation and relaxation techniques and to cognitive therapy as a technique for quelling anxiety, a session on nutrition offered by an excellent nutritionist, a qi gong session, and delicious meals with opportunities to get to know the other participants, all of whom were either cancer survivors or their caretakers (including two spouses and one sister of survivors). I made friends with several participants with whom I hope to stay in email touch, and I was especially impressed by the retreat coordinator, Erin Blanchette, who is the best facilitator of anything I've ever met.
The only real down-side to the weekend was learning that our retreat is the last Sunstone will offer. The facility, which is quite beautiful and extensive, on 14 acres, is about to go up for sale. Sunstone runs four or five resource centers for cancer patients and survivors; these are mostly, I think, in hospitals in the Tucson area, and they serve thousands of people each year. The retreat center served, at most, 500 people a year, and was extremely expensive to operate and maintain, so the board decided in late February to close the retreat center and concentrate on the resource centers. The retreat center was run entirely on contributions, and as Erin explained, it has proven very difficult to convince funders that care for the emotional and spiritual needs of cancer patients and survivors is as important as chemotherapy, radiation, or surgery. The oncology community is beginning to come around to this idea; at UW Hospital, for example, I see a physician who specializes in integrative medicine and who works out of the oncology clinic one day each week; I also see an acupuncturist (who is a naturopathic doctor) at the clinic. But I think there are relatively few oncologists like Allan Hamilton, the neurosurgeon who owns Rancho Bosque and runs the equine therapy program with his wife Jane, a psychologist, who really embrace and practice "alternative" and "complementary" modalities along with traditional Western medicine. And as far as funding goes-- research into the sexy and high-profile diseases like breast and prostate cancer attracts the big bucks.
Well-- speaking of alternative therapies, time for me to go to my Feldenkrais class. More next week.
I discovered, though, flying back yesterday that even I can't live someplace for 31 years without getting attached to it. The sky was clear as we flew over Minnesota and approached the Mississippi River, which we crossed right at the confluence with the Wisconsin River. There was (of course) snow on the ground, and because it was late afternoon, the shadows really defined the topography. We paralleled the Wisconsin, heading east, until it took off to the north, and then we flew over all three of Madison's lakes, as well as the isthmus with the state capitol dome shining gold in the setting sun--it was a spectacular flight. And as soon as we crossed the Mississippi, the refrain from an old song, "The Wisconsin That I Love," came, unbidden, into my head, and played over and over until we landed. I guess I won't be moving.
But as a result of the weekend at Sunstone, I hope to be adding two activities to my schedule: returning to a qi gong class, and doing something with horses, perhaps volunteering at a nearby stable that offers equine therapy to people with disabilities. I discovered that I love to be near horses, and would love to learn to work with them, discovering more about how they sense people's energy, and how I can use my energy to make them respond as I wish.
If there was a theme to the retreat, I think it could be described as "intention." We didn't ride the horses (because of liability issues), but performed several exercises with them, learning how to make them turn left and right without touching them, how to get them to jump over a low barrier and to walk over a pipe lying on the ground, how to get them to move to the rail of the round pen and then walk, trot, and lope (gallop) in a particular direction around the pen (clockwise or counter-clockwise), always signaling our intent by changing the size and direction of our "energy bubble." At the end of this last exercise, we stood in the middle of the pen, calmed ourselves down and quieted our energy, which attracted the horse, because horses, being prey animals, like calm places. I was really good at this (it's a lot easier for me to be calm than to make my energy large and compelling enough to get the horse to lope) and the horse, whose name was Romeo, came right up to me and put his head on my shoulder and relaxed. I fell immediately in love. Makes me feel like a 12-year-old girl!
The equine exercises were especially emotional for several participants, some of whom had spent a lot of time with horses, or with a horse they owned, as young people, and who were suddenly put back in touch with their younger selves, whom they'd abandoned or forgotten, and for others who were afraid of horses, and discovered that they really could face and even draw hope and have affection for and control something much bigger than themselves. (Yes, the horse in those cases was a clear metaphor for cancer.) I haven't had much previous experience with horses--I rode with a friend several times in the year or two after I graduated from college, and I horse-packed into the Tetons with my kids and my sister Paula in 1987--and I'm not afraid of horses. Also, I haven't had much problem with intention since the mid-1980s, after I completed treatment for Hodgkin's disease and determined (after a lot of agonizing) to leave my marriage. But I still felt the exercises as powerful; I enjoyed learning to manipulate my energy field; and I wanted much more of that sort of experience.
The retreat also included short introductions to various kinds of meditation and relaxation techniques and to cognitive therapy as a technique for quelling anxiety, a session on nutrition offered by an excellent nutritionist, a qi gong session, and delicious meals with opportunities to get to know the other participants, all of whom were either cancer survivors or their caretakers (including two spouses and one sister of survivors). I made friends with several participants with whom I hope to stay in email touch, and I was especially impressed by the retreat coordinator, Erin Blanchette, who is the best facilitator of anything I've ever met.
The only real down-side to the weekend was learning that our retreat is the last Sunstone will offer. The facility, which is quite beautiful and extensive, on 14 acres, is about to go up for sale. Sunstone runs four or five resource centers for cancer patients and survivors; these are mostly, I think, in hospitals in the Tucson area, and they serve thousands of people each year. The retreat center served, at most, 500 people a year, and was extremely expensive to operate and maintain, so the board decided in late February to close the retreat center and concentrate on the resource centers. The retreat center was run entirely on contributions, and as Erin explained, it has proven very difficult to convince funders that care for the emotional and spiritual needs of cancer patients and survivors is as important as chemotherapy, radiation, or surgery. The oncology community is beginning to come around to this idea; at UW Hospital, for example, I see a physician who specializes in integrative medicine and who works out of the oncology clinic one day each week; I also see an acupuncturist (who is a naturopathic doctor) at the clinic. But I think there are relatively few oncologists like Allan Hamilton, the neurosurgeon who owns Rancho Bosque and runs the equine therapy program with his wife Jane, a psychologist, who really embrace and practice "alternative" and "complementary" modalities along with traditional Western medicine. And as far as funding goes-- research into the sexy and high-profile diseases like breast and prostate cancer attracts the big bucks.
Well-- speaking of alternative therapies, time for me to go to my Feldenkrais class. More next week.
Monday, February 25, 2008
TTBOOK Commentary
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.
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 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!
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