A year ago, I was in Tuscany, staying at an organic farm/villa with my younger son, Nate and his girlfriend, Meghan, as guests of Meghan's dad, step-mom, and sister. On New Year's Eve, we went to an excellent restaurant in a small town nearby for an eight-course dinner that began at 9 PM and ended (with ultra-sweet sparkly wine) promptly at midnight.
Before dinner, on the advice of the woman who'd called about twelve restaurants to find one that had room for us, we went to the beautifully preserved ruin of a medieval abbey. The lighting was especially well-done and subtle, and the experience was heightened by the full moon, which was centered in the stonework of the rose window at one end of the building. There were few people around, and the place was magical, mystic, maybe even spiritual.
Dinner was spectacular, though with my tiny stomach (80% removed three years ago), I could only take tastes from other people's plates. I'm not sure that even with a full-sized stomach I could have consumed all eight courses! I was a little sad that everyone else got a new place setting with each course, and I just kept eating off my charger (the underplate). But then, the restaurant wasn't charging me for eating, either.
At midnight, everyone in the restaurant--everyone in the town--adjourned to the town square, where someone was serving mulled wine from a big cauldron, and someone else was providing music, singing along to a karaoke machine, and everyone was dancing. Philip and Kathleen (Meghan's parents) wowed the crowd, especially the young Italians, with their moves from the '60s. It was quite a party, but about 2:30 AM (surely the latest I'd been up in years), I really began to fade. And, no thanks to the mulled wine, get morose. An elderly couple was dancing: she in her mink coat and high heels and carefully dyed and curled hair, he in a trendy orange/rust colored cardigan. They were probably in their 80s, and I thought, I'll never be as old as they are; in fact, this is likely my last new year's eve.
Well, obviously, it wasn't. I'm leaving this afternoon to meet Nate in Las Vegas. Tomorrow we'll drive to Zion National Park and meet up with Jed (my older son) and his partner, Nazgol. I imagine we'll spend a rousing New Year's Eve playing Scrabble. Or maybe we'll go out-- but whatever we do, I'll be there! And since I doubt there will be any mulled wine, maybe I can dispense with the moroseness, and just enjoy the fact that I've had a great year, and that I'm once again able to greet the new year in a beautiful place with people I love.
Happy new year to you!
Saturday, December 29, 2007
Monday, December 24, 2007
solstice, christmas, chanukah
It's Christmas Eve, and I've spent part of the day restoring order to the house after what might have been the best solstice party ever. (See pictures taken by my good friend Jim Henkel.)
And that's saying something, because I think I've been making latkes for friends--the main event of my solstice parties--for 41 years, ever since I graduated from college.
I'm not sure what made the party so wonderful. Part of it, I'm sure, was the help I got from my friends: Janet Zimmerman (who's standing to my left in the bottom picture) went shopping with me two weeks ago and lugged the wine, beer, and other heavy stuff to the basement for safekeeping until the party; Janet and Diane Lauver came over about ten days ago to help make the latkes; Janet came back on Saturday afternoon to bring stuff up from the basement and help move furniture around; Jim showed up early the day of the party and volunteered to shovel and sand the front walk. I've never had--or asked for--help with the party before, except for the year (1981) I had just been diagnosed with Hodgkin's disease, and my sister Susie flew in to Madison from wherever she was then living (Olympia, Washington? ) to help. This year I wondered why I'd always thought I could, should, do it alone. It was so much more fun to shop and cook with friends!
The weather yesterday was really terrible: snow, ice, very high winds, bitter cold. Several people called and said they didn't want to leave their houses, or they wanted to but their car doors were frozen shut. I was sure that the weather, combined with the fact that a lot of my friends were leaving town, or trying to leave town, to get to their families for the holidays, would mean the party would be very small. Well, it was perhaps smaller than the average solstice party, but there were still about 60 people here. And because the crowd was a little thinner than usual, I think it was more comfortable. Often, we're squeezed so tight around the table full of delicious food (everyone brings a contribution) that it's almost impossible to move!
Of course, part of my feeling of celebration was just knowing that I'd made it to another solstice party. Last year at this time, I really wondered whether I'd be around to give the party in 2007. And here I am! It's hard not to read too much symbolism into the return of the light, because I feel so much better than I did just three months ago. Of course, that's because of the chemo, and we know that eventually the chemo will stop working. But the point is, at the moment, things are fine.
The sad part of the party was that two long-time friends and solstice party regulars were missing: Jane Henkel, who died earlier this month, and Sasha Sternberg, who was swept out to sea off the Cape of Good Hope last May, when he (along with his wife Helen and their daughter and son-in-law) was visiting his son Pasha, a college junior who'd been studying at the University of Cape Town. Sasha was only 52, and his death was a terrible shock, and a terrible tragedy. I never imagined that I woud outlive him, and suddenly--he was gone. But one of the lessons of giving a party for all one's friends every year is realizing how friendship patterns shift: how people come into our lives and leave them. The Henkels were probably the only people in attendance at the first Madison party, in 1976, who were still on the guest list 30 years later. And even they weren't around for the first parties, which were in California. I'm still friends with the people for whom I made those first latkes, in 1966: I'll see Claire Gorfinkel in LA just after New Year's; I just got a lovely card from Laura and Bruce Saunders, now in Seattle; Chris Emerson Salo, an old SF housemate also now in Seattle, emailed to say she still makes "my" latkes. But of course, it's been many years since any of them has actually made an appearance at a solstice party.
Still, one of the wonderful things about the solstice party is the reminder of all the friends I have; all the people who've supported me (and my kids) through the years, from parents who stood with me watching endless soccer games in the freezing cold, to fellow founders of the Madison Children's Museum, to old neighbors and car-pool drivers.... Well, I think you get the idea.
I can't let Christmas Eve pass without mentioning two memorable Christmas Eves, quite different, from my past. One, when I was perhaps twelve years old, made me perfectly miserable. My father had volunteered me to babysit for a colleague of his, a Belgian with a couple of small kids, while the parents went to midnight mass. After serving the children dinner (the memorable part was frozen French fries with mayonnaise instead of ketchup!) and putting them to bed, I settled down to watch TV. Every channel featured something that had nothing to do with me: Christmas services, Christmas movies, Christmas carols on the variety shows. I felt completely left out. I was convinced that everyone in the world except me was enjoying a wonderful, cozy holiday with their perfect families. I wouldn't have put it quite this way at the time, but it really sucked to be a Jewish pre-teen on Christmas eve.
The other memorable Christmas eve was in 1982. I had been in Palo Alto for almost a month, having the third (and last) series of radiation treatments for Hodgkin's disease. Everyone at Stanford Hospital took a break for Christmas, and my sister Susie came down from Washington so we could spend the holiday together. We drove through San Francisco to Pt. Reyes that evening, stopping in the city for dinner (at a wonderful ethnic restaurant featured in a "great meals for under $5" article in the Chronicle). We also stopped into a very ritzy wine shop on Union Square to buy ourselves a bottle of port. "This one will be very nice," the proprietor said. "But tell the lucky recipient to set it by for about ten years." Oh no, we said: we wanted something for ourselves, to drink right away. I think he was horrified, but he directed us to a less distinguished (and much less pricey) bottle. Which was delicious, when we opened it several hours later. We proceeded up to Pt. Reyes, and the next day hiked and then had dinner at a fine Czech restaurant full of Jews, atheists, and assorted Christians who were happily escaping their families' celebrations and neuroses. It was a terrific Christmas.
This year, Susie and I tried to find a time, today or tomorrow, when we could have a long Internet chat. But we couldn't. Oy, I said. The Jews are so busy ignoring Christmas they don't even have time to chat!
I'm off in an hour or two for (Jewish) comedian Jodie Cohen's more-than-slightly-irreverent Christmas eve show, followed by dinner at a Chinese restaurant. And tomorrow, I'll be at a movie (Juno) and dinner at some other restaurant run by people for whom December 25 is just another day when the light grows a little stronger.
But for all of you who celebrate rather than (try to) ignore these holidays: have a wonderful Christmas! And I'll be back later in the week, before I take off for New Year's with my kids.
Friday, December 21, 2007
Writing and Work
People often ask me two questions that I have difficulty knowing how to answer. The first-- which I (and every Medicare recipient) gets asked before every medical appointment-- is Are you employed, retired, or self-employed? (You'd think that the computer could remember the answer to these and the other tiresome Medicare questions, but apparently it can't.)
I have trouble with that question because yes, I'm retired from my job at Wisconsin Public Radio, but am I really retired? I still file a Schedule C with the IRS, because I still have a tiny bit of self-employment income each year. But am I really self-employed, when my most of my days are consumed with tasks that have nothing to do with earning a living? (Not that I could ever have lived on my self-employment income!) So sometimes I tell the receptionist I'm retired; sometimes I say I'm self-employed. Depends on my mood.
But really, the question is, am I (still) a writer? No one's asked me that question--I think everyone (except me) assumes that I am. A lot of people--friends and acquaintances--do ask me, Have you been writing poems? And that's the other tough question. The short answer is actually quite simple. No, I haven't written a poem since last May, when Robin Chapman and I taught our annual Poetry Camp workshop at The Clearing in Door County. We always do the exercises along with the other workshop participants, so I wrote some poem drafts then. But most, maybe all, of those drafts still need to be revised. So it's been more than half a year since I wrote a poem. I dutifully show up at our Lake Effect bi-weekly poetry critique sessions, but it's been months since I brought a poem to present for the group's reaction. The truth is, I don't have very much interest in writing poems now.
There are a lot of reasons for this. I wrote an entire manuscript of poems, Limited Warranty, between August 2006, when I learned the cancer had spread, and the spring of 2007. These poems, which reflect my experience and emotions about having cancer, came very quickly and felt necessary to write. My poet friends tell me that they are very good--in fact, my best work. It's quite clear to me, though, from the reaction of editors at the many literary journals to which I've sent these poems, that the subject matter doesn't have much appeal. Only three have been accepted. One, "Immune Response," just appeared in Poetry East. Two will be published in January (I think) in a brand-new journal published by a medical school that features work with a medical theme. I've stopped sending individual poems out to journals because I don't want to leave my poet friends/literary executors with the time-consuming, mind-numbing bookkeeping required when the rejections arrive in the mailbox. I have been sending the whole manuscript to various contests/publishers in the hopes that maybe someone will like it enough to bring it out as a book. So far, the response has been deafening silence.
The (non) responses don't make me eager to write more poems on this topic; but more to the point, I feel as though I've said what I have to say in poetry about cancer. To the extent that in the past I've used poetry as a means to access my feelings-- well, I'm pretty clear about how I feel about my situation. I don't need to write more poems to tell me I'm sad about the prospects of a shortened life, or grateful for the years I've had, or delighted by the challenge to live each moment as consciously as I can. And frankly, at the moment I'd rather write work that has more hope of an audience than poems do. This blog, for instance. Or the newsletter articles and the proposal I've written for the Coalition for Wisconsin Health, which is working for universal single-payer health care. So no, I'm not writing poems these days.
But that doesn't mean I've stopped writing. And sometimes, other people do things that remind me that I am a writer, if not at the moment a poet. A few days ago, for example, the southwestern writer Susan Albert posted a really thoughtful review of my memoir, Black Eye, on her website: http://www.storycirclebookreviews.org/reviews/blackeye.shtml and on Amazon. And I just signed the Letter of Intent to donate my papers to the Historical Society. Their interest in archiving the papers (including all those unpublished poems) is definitely affirming. One of my tasks for the months ahead is to organize the papers. I suppose you could call that "writing work."
So yes, I'm retired. Sometimes I'm self-employed. No, I'm not writing poems. Yes, even I have to admit I'm still a writer. Stay tuned.... and thanks for asking!
I have trouble with that question because yes, I'm retired from my job at Wisconsin Public Radio, but am I really retired? I still file a Schedule C with the IRS, because I still have a tiny bit of self-employment income each year. But am I really self-employed, when my most of my days are consumed with tasks that have nothing to do with earning a living? (Not that I could ever have lived on my self-employment income!) So sometimes I tell the receptionist I'm retired; sometimes I say I'm self-employed. Depends on my mood.
But really, the question is, am I (still) a writer? No one's asked me that question--I think everyone (except me) assumes that I am. A lot of people--friends and acquaintances--do ask me, Have you been writing poems? And that's the other tough question. The short answer is actually quite simple. No, I haven't written a poem since last May, when Robin Chapman and I taught our annual Poetry Camp workshop at The Clearing in Door County. We always do the exercises along with the other workshop participants, so I wrote some poem drafts then. But most, maybe all, of those drafts still need to be revised. So it's been more than half a year since I wrote a poem. I dutifully show up at our Lake Effect bi-weekly poetry critique sessions, but it's been months since I brought a poem to present for the group's reaction. The truth is, I don't have very much interest in writing poems now.
There are a lot of reasons for this. I wrote an entire manuscript of poems, Limited Warranty, between August 2006, when I learned the cancer had spread, and the spring of 2007. These poems, which reflect my experience and emotions about having cancer, came very quickly and felt necessary to write. My poet friends tell me that they are very good--in fact, my best work. It's quite clear to me, though, from the reaction of editors at the many literary journals to which I've sent these poems, that the subject matter doesn't have much appeal. Only three have been accepted. One, "Immune Response," just appeared in Poetry East. Two will be published in January (I think) in a brand-new journal published by a medical school that features work with a medical theme. I've stopped sending individual poems out to journals because I don't want to leave my poet friends/literary executors with the time-consuming, mind-numbing bookkeeping required when the rejections arrive in the mailbox. I have been sending the whole manuscript to various contests/publishers in the hopes that maybe someone will like it enough to bring it out as a book. So far, the response has been deafening silence.
The (non) responses don't make me eager to write more poems on this topic; but more to the point, I feel as though I've said what I have to say in poetry about cancer. To the extent that in the past I've used poetry as a means to access my feelings-- well, I'm pretty clear about how I feel about my situation. I don't need to write more poems to tell me I'm sad about the prospects of a shortened life, or grateful for the years I've had, or delighted by the challenge to live each moment as consciously as I can. And frankly, at the moment I'd rather write work that has more hope of an audience than poems do. This blog, for instance. Or the newsletter articles and the proposal I've written for the Coalition for Wisconsin Health, which is working for universal single-payer health care. So no, I'm not writing poems these days.
But that doesn't mean I've stopped writing. And sometimes, other people do things that remind me that I am a writer, if not at the moment a poet. A few days ago, for example, the southwestern writer Susan Albert posted a really thoughtful review of my memoir, Black Eye, on her website: http://www.storycirclebookreviews.org/reviews/blackeye.shtml and on Amazon. And I just signed the Letter of Intent to donate my papers to the Historical Society. Their interest in archiving the papers (including all those unpublished poems) is definitely affirming. One of my tasks for the months ahead is to organize the papers. I suppose you could call that "writing work."
So yes, I'm retired. Sometimes I'm self-employed. No, I'm not writing poems. Yes, even I have to admit I'm still a writer. Stay tuned.... and thanks for asking!
Wednesday, December 12, 2007
Jane Henkel, In Memoriam
Yesterday afternoon, while I was writing my "Ducks in a Row" post (see below), I learned that my good friend, Jane Henkel, died Tuesday night. Jane had liver cancer. If I remember correctly, she was 58 (and still working as a staff attorney for the Wisconsin legislature) when she was diagnosed. She was given two years to live. She way outlived the prognosis--she would have turned 66 on March 21.
Jane and her husband Jim were the first friends I made when we moved to Madison in 1976. Jim and my husband Steve had sailed together in high school, along with a third friend, Doug Tormey. The Tormeys also moved back to Madison that summer, and the three men bought an E-scow together and began winning many, many races. Jane, a consummate athlete, often sailed with them. (Was I jealous? Just guess! There is nothing quite as exhilarating as hiking out--leaning your whole body out of the boat, parallel to the water--on a sunny, breezy summer day, except maybe riding your bike downhill at 35 or 40 mph in western Dane County on a long and beautiful summer evening.)
When we realized that we were going to stay in Madison (we had come for a two-year post-doc) and bought a house on Sherman Avenue, with a backyard on Lake Mendota, the boat and the sailing program moved into our back yard. Jim and Jane were around virtually every weekend, and many Wednesday evenings, too, hanging out before and after races. And I couldn't begin to count the number of Friday evenings they came over for pizza and dominoes in those years. It was our regular Friday night entertainment. And the Henkels remained steadfast friends--to both Steve and me, and to our sons--through our divorce and afterward; of all our friends and acquaintances the only people able to accomplish this difficult feat.
Jane and I were in many ways very different. She was a quiet, private person, not interested in making the details of her disease and treatment public. She was extremely conversant with computers (during and after college she worked as a programmer at the UW Computer Center, and in the past seven years, she used the computer extensively to edit and make slide shows of her excellent flower photographs) but she would never have considered writing a blog! But she was my role model. Not only did she outlive a grim prognosis by many years, she understood that if you're alive, it's incumbent on you to live, and live fully.
After her diagnosis, between chemo treatments, she and Jim road biked through many (mountainous) countries in Europe, and skied and mountain-biked in Colorado and other western states. Jane continued to bike regularly on Wednesday nights until just a few years ago, when the combination of treatment and disease slowed her down too much to make the rides enjoyable. (But finally, I could keep up with her!) Still, she found other people to ride with on other days, and continued riding into last summer. After her retirement, she returned to playing music with others, as she had in high school, and began serious study of the recorder. (When I started taking cello lessons, we tried to play duets, but she was so much better than I that we had to give it up.) She attended recorder workshops and played in several glorious concerts in the Capitol rotunda. And she was a regular at the gym. The last time I saw her, in fact, was at our spinning (stationery bike) class last Wednesday. There was no way to know she would not be there on Monday, too.
Several people have offered me condolences today, and asked, concerned, how I feel. The truth is, I'm sad, but I feel pretty good. Even in death, Jane is a role model. I realize, now, that the end of life isn't necessarily the bed-ridden weeks, surrounded by long-faced family and friends, that I have imagined. It could be as short as three days. Because as Jane knew, you have to live until you die.
Jane and her husband Jim were the first friends I made when we moved to Madison in 1976. Jim and my husband Steve had sailed together in high school, along with a third friend, Doug Tormey. The Tormeys also moved back to Madison that summer, and the three men bought an E-scow together and began winning many, many races. Jane, a consummate athlete, often sailed with them. (Was I jealous? Just guess! There is nothing quite as exhilarating as hiking out--leaning your whole body out of the boat, parallel to the water--on a sunny, breezy summer day, except maybe riding your bike downhill at 35 or 40 mph in western Dane County on a long and beautiful summer evening.)
When we realized that we were going to stay in Madison (we had come for a two-year post-doc) and bought a house on Sherman Avenue, with a backyard on Lake Mendota, the boat and the sailing program moved into our back yard. Jim and Jane were around virtually every weekend, and many Wednesday evenings, too, hanging out before and after races. And I couldn't begin to count the number of Friday evenings they came over for pizza and dominoes in those years. It was our regular Friday night entertainment. And the Henkels remained steadfast friends--to both Steve and me, and to our sons--through our divorce and afterward; of all our friends and acquaintances the only people able to accomplish this difficult feat.
Jane and I were in many ways very different. She was a quiet, private person, not interested in making the details of her disease and treatment public. She was extremely conversant with computers (during and after college she worked as a programmer at the UW Computer Center, and in the past seven years, she used the computer extensively to edit and make slide shows of her excellent flower photographs) but she would never have considered writing a blog! But she was my role model. Not only did she outlive a grim prognosis by many years, she understood that if you're alive, it's incumbent on you to live, and live fully.
After her diagnosis, between chemo treatments, she and Jim road biked through many (mountainous) countries in Europe, and skied and mountain-biked in Colorado and other western states. Jane continued to bike regularly on Wednesday nights until just a few years ago, when the combination of treatment and disease slowed her down too much to make the rides enjoyable. (But finally, I could keep up with her!) Still, she found other people to ride with on other days, and continued riding into last summer. After her retirement, she returned to playing music with others, as she had in high school, and began serious study of the recorder. (When I started taking cello lessons, we tried to play duets, but she was so much better than I that we had to give it up.) She attended recorder workshops and played in several glorious concerts in the Capitol rotunda. And she was a regular at the gym. The last time I saw her, in fact, was at our spinning (stationery bike) class last Wednesday. There was no way to know she would not be there on Monday, too.
Several people have offered me condolences today, and asked, concerned, how I feel. The truth is, I'm sad, but I feel pretty good. Even in death, Jane is a role model. I realize, now, that the end of life isn't necessarily the bed-ridden weeks, surrounded by long-faced family and friends, that I have imagined. It could be as short as three days. Because as Jane knew, you have to live until you die.
Tuesday, December 11, 2007
Ducks in a Row
It's stopped snowing, for the moment, though both my cello lesson and my Feldenkrais class have been cancelled-- leaving me a blissfully long day with nothing scheduled. And since I'm nearly two weeks past my last chemo day, I can really enjoy it.
This morning, Robin (my walking partner of (gasp) something like eight years) and I did our first mall walk, ever. It's not just that the cold makes walking outside really unpleasant for me these days, because the chemo makes me very cold-sensitive; but the combination of ice and snow underfoot makes it really pretty hazardous, no matter how young and healthy you might be. So there we were, hiking from Sentry Foods to Sundance theaters and back again, over and over, our take-out coffee and green tea in hand! I'm sure we'll be there again, if this weather keeps up. And why wouldn't it keep up? It's winter in Wisconsin, whatever the calendar says.
I've been thinking about this "Ducks in a Row" post, and anticipating writing it, for a long time. Though I realize you might find yourself less eager to read it than I am to write it-- especially if you're the sort of person who quails at the thought of wills, do not resuscitate orders, and the like. But I long ago-- at least as early as last summer-- decided that this fall I was going to get all my ducks in a row, and then, once they were, I could live another ten years, or ten months, or ten weeks-- whatever-- without worrying about details related to death and dying. Then in mid-September, when I had serious breathing problems (before I started this round of chemo), all the ducks took on a kind of urgency they hadn't before. I decided that once I got everything pretty much in order-- and I figured it would take me most of the fall, which it has-- I would tell people about the process and what was involved, not so much so you know what I've done for myself, but so you can consider what you might want/need to do for yourself. Because (like avoiding treacherous sidewalks), you don't need to be old or ill to pay attention to some of these things.
Like a will. Everyone should have one. In fact, I did have one--but it was written after my divorce, some 20 years ago, when my sons were still minors and I hadn't published a single poem. It needed to be updated. And I needed to decide what would happen to my papers--journals, unpublished poems, the other detritus that crowds my study. People encouraged me to see if the Historical Society would be interested in them. I was skeptical; it seemed the height of hubris to assume that they would be. But they were! So now I'm in the process of refining and signing a letter of intent to donate all this stuff--in the not-so-secret hope that a hundred years from now, some poor grad student in English will be looking for a dissertation topic and will discover me for posterity!
And what the funeral industry calls "pre-arrangement" or "pre-need planning." My father had done this, and it was a great comfort to my sister Susie, his wife, and me after he died to pull out the card in his wallet with the phone number we should call. Although he'd made his plans with (and paid the bill to) a funeral business in Pittsburgh, where he lived, he died in Madison. The person who answered our phone call referred us to a local funeral home, which took care of the details of the plain and simple cremation, just as he desired. Before I called to make an appointment with someone from that same funeral home, I had to talk to the rabbi of our congregation. I wanted to know why, traditionally, Jews oppose cremation, and whether, if I were cremated, she would be willing to conduct the rather non-traditional service that I prefer. Obviously, not everyone chooses (as my father did, and I will) the least expensive, no-frills option. But if you can bring yourself to think about this, and make the choice--believe me, it will save your heirs some difficult moments. Just watch a few episodes of "Six Feet Under" if you need further convincing!
Other "ducks"-- choosing (or in my case, updating) a health care power of attorney and financial power of attorney-- are also things you can and should do, however young and healthy you may be. When my father died, one of the things we learned was how important it is to designate someone to make decisions about your care--according to your wishes--if you are unable to make them. Dr. Norman Fost, the former head of the ethics committee at University of Wisconsin Hospital, says this is even more important than having a living will, which can never cover every possible circumstance. My dad had a living will, which I was proud to be able to find in my safe-deposit box. It clearly stated circumstances under which he did not want to be resuscitated. I brought it to the hospital; as a consequence, I thought he had a DNR (do not resuscitate) order. But he didn't. And he was resuscitated after his heart failed. His brain had been deprived of oxygen for a relatively long time, we were told. It took us a long, difficult day, and a meeting with Dr. Fost, to get the hospital to remove him from life support systems that we--my sisters, his wife, and I--all knew he did not want.
I was telling this story to the social worker in the oncology clinic when I learned that in Wisconsin and seven or eight other states, there's a law that distinguishes between a DNR order that's effective in the hospital, and one that an EMT has to honor, if someone calls 911. So one of my ducks--really the most difficult for me, emotionally--was to get a non-hospital DNR order. This isn't something everyone would want. But I do. As one of my oncologists said, even if someone with advanced cancer is resuscitated successfully, the consequences are not so pretty. So now I wear a silver bracelet that should alert any EMT to my wishes.
I also contacted hospice to learn about their services-- and talked to my oncologist to see if it was time to be admitted to hospice, which it isn't. (Medicare puts you on a different track if you're a hospice patient, and they wouldn't pay for my very expensive chemotherapy if I were receiving hospice services.)
And finally--and this turns out to be the "fun duck"--I'm doing an inventory of every room in my house. On the advice of my attorney, I'm making a list of specific items that go to specific people. But I'm also writing down the provenance of certain items--who made what piece of artwork, or gave me certain pieces of jewelry, or where I bought the obi that decorates my bedroom window. (Duh, Japan, of course.) I'm not much of a materialist, and I don't have as many "things" as a lot of people, but it really is fun to think about the objects that surround me in terms of when and where and how they entered my life.
OK, enough said. Or written. Time to go live life-- or at least have supper!
This morning, Robin (my walking partner of (gasp) something like eight years) and I did our first mall walk, ever. It's not just that the cold makes walking outside really unpleasant for me these days, because the chemo makes me very cold-sensitive; but the combination of ice and snow underfoot makes it really pretty hazardous, no matter how young and healthy you might be. So there we were, hiking from Sentry Foods to Sundance theaters and back again, over and over, our take-out coffee and green tea in hand! I'm sure we'll be there again, if this weather keeps up. And why wouldn't it keep up? It's winter in Wisconsin, whatever the calendar says.
I've been thinking about this "Ducks in a Row" post, and anticipating writing it, for a long time. Though I realize you might find yourself less eager to read it than I am to write it-- especially if you're the sort of person who quails at the thought of wills, do not resuscitate orders, and the like. But I long ago-- at least as early as last summer-- decided that this fall I was going to get all my ducks in a row, and then, once they were, I could live another ten years, or ten months, or ten weeks-- whatever-- without worrying about details related to death and dying. Then in mid-September, when I had serious breathing problems (before I started this round of chemo), all the ducks took on a kind of urgency they hadn't before. I decided that once I got everything pretty much in order-- and I figured it would take me most of the fall, which it has-- I would tell people about the process and what was involved, not so much so you know what I've done for myself, but so you can consider what you might want/need to do for yourself. Because (like avoiding treacherous sidewalks), you don't need to be old or ill to pay attention to some of these things.
Like a will. Everyone should have one. In fact, I did have one--but it was written after my divorce, some 20 years ago, when my sons were still minors and I hadn't published a single poem. It needed to be updated. And I needed to decide what would happen to my papers--journals, unpublished poems, the other detritus that crowds my study. People encouraged me to see if the Historical Society would be interested in them. I was skeptical; it seemed the height of hubris to assume that they would be. But they were! So now I'm in the process of refining and signing a letter of intent to donate all this stuff--in the not-so-secret hope that a hundred years from now, some poor grad student in English will be looking for a dissertation topic and will discover me for posterity!
And what the funeral industry calls "pre-arrangement" or "pre-need planning." My father had done this, and it was a great comfort to my sister Susie, his wife, and me after he died to pull out the card in his wallet with the phone number we should call. Although he'd made his plans with (and paid the bill to) a funeral business in Pittsburgh, where he lived, he died in Madison. The person who answered our phone call referred us to a local funeral home, which took care of the details of the plain and simple cremation, just as he desired. Before I called to make an appointment with someone from that same funeral home, I had to talk to the rabbi of our congregation. I wanted to know why, traditionally, Jews oppose cremation, and whether, if I were cremated, she would be willing to conduct the rather non-traditional service that I prefer. Obviously, not everyone chooses (as my father did, and I will) the least expensive, no-frills option. But if you can bring yourself to think about this, and make the choice--believe me, it will save your heirs some difficult moments. Just watch a few episodes of "Six Feet Under" if you need further convincing!
Other "ducks"-- choosing (or in my case, updating) a health care power of attorney and financial power of attorney-- are also things you can and should do, however young and healthy you may be. When my father died, one of the things we learned was how important it is to designate someone to make decisions about your care--according to your wishes--if you are unable to make them. Dr. Norman Fost, the former head of the ethics committee at University of Wisconsin Hospital, says this is even more important than having a living will, which can never cover every possible circumstance. My dad had a living will, which I was proud to be able to find in my safe-deposit box. It clearly stated circumstances under which he did not want to be resuscitated. I brought it to the hospital; as a consequence, I thought he had a DNR (do not resuscitate) order. But he didn't. And he was resuscitated after his heart failed. His brain had been deprived of oxygen for a relatively long time, we were told. It took us a long, difficult day, and a meeting with Dr. Fost, to get the hospital to remove him from life support systems that we--my sisters, his wife, and I--all knew he did not want.
I was telling this story to the social worker in the oncology clinic when I learned that in Wisconsin and seven or eight other states, there's a law that distinguishes between a DNR order that's effective in the hospital, and one that an EMT has to honor, if someone calls 911. So one of my ducks--really the most difficult for me, emotionally--was to get a non-hospital DNR order. This isn't something everyone would want. But I do. As one of my oncologists said, even if someone with advanced cancer is resuscitated successfully, the consequences are not so pretty. So now I wear a silver bracelet that should alert any EMT to my wishes.
I also contacted hospice to learn about their services-- and talked to my oncologist to see if it was time to be admitted to hospice, which it isn't. (Medicare puts you on a different track if you're a hospice patient, and they wouldn't pay for my very expensive chemotherapy if I were receiving hospice services.)
And finally--and this turns out to be the "fun duck"--I'm doing an inventory of every room in my house. On the advice of my attorney, I'm making a list of specific items that go to specific people. But I'm also writing down the provenance of certain items--who made what piece of artwork, or gave me certain pieces of jewelry, or where I bought the obi that decorates my bedroom window. (Duh, Japan, of course.) I'm not much of a materialist, and I don't have as many "things" as a lot of people, but it really is fun to think about the objects that surround me in terms of when and where and how they entered my life.
OK, enough said. Or written. Time to go live life-- or at least have supper!
Tuesday, December 4, 2007
Bicycle Dreams
Nothing profound today-- just some comments and anecdotes of the sort that I would share with you in a friendly conversation, if we could have a conversation.
First, those dreams. The bi-pap machine I use at night pushes air into my lungs when I inhale (at least I think that's what it's doing), and if the mask slips, I get a rush of air aimed at my face. Last week some time I woke up with the air rushing past, dreaming that I was headed downhill on my bike at 20 mph. Delightful! But last night's dream was even better (and had nothing to do with the bi-pap machine). It was a whole bike ride with friends on familiar roads around Madison. The best thing about it was that the route, which had several good down-hills, had no up-hills! So even though I had cancer, and difficulty breathing, I had no trouble at all with this ride. It was a real pleasure.
Now you bikers need to spend the winter finding that route for me! Not on your bikes (though I have seen a few crazy people heading past my house in the past few days, on the rutted ice, to the bike path. I'm sure they think they have full control of their bikes, but what about the drivers of the cars they meet?)
To give you non-Madisonians a sense of the road (and sidewalk) conditions here since our snow-and-ice storm on Saturday: yesterday I walked across the yard to the compost bin on top of 4-6 inches of snow, capped by a crust so thick it didn't even crack! When the junk was falling on Saturday afternoon and evening, I stayed in the house and wrapped Chanukah presents instead of venturing out to the orchestra concert I was supposed to play in on campus. Sunday morning, having been in deep denial about the approach of winter and the need to arrange shoveling help, I looked out the window to see two neighbors, Jack O'Maera and Michael, a very fit guy across the street whom I don't even know, attacking my sidewalk and front walk and driveway entrance with a vengeance. I burst into tears. Later, I saw Susie O'Maera, who's about 10, I think, working on the sidewalk. And someone--I don't know who--also did the route from the garage to the back door, which is the way I usually get into the house. Thank you all!
Speaking of thanks-- in the past couple of weeks, two people have just dropped by the house, without even calling, and I really enjoyed their visits. In both cases, they were coming by to drop something off, and I happened to be home. But it made me realize that this is a nice, spontaneous kind of get-together (and kind of un-American, not part of our ordinary culture, where we make elaborate plans, or at least call ahead). So if you get the urge, come by. If I'm busy, I'll let you know it's not a good time. And if I'm not home, which I'm often not, leave a note.
One last thing: those of you who will be in Madison on December 23, save the date! I'm having my annual solstice party that afternoon/evening, 4-9 PM. I'll provide latkes and drinks; you bring a solstice food (something that means the season to you) and be prepared to go shoeless. Two things will be different this year: most important, my good friends Janet Zimmerman and Diane Lauver are helping me get ready for the party. And also, it's not going to be possible for me to make myself heard over the din of the assembled multitudes, so bring a little anecdote to tell me, in lieu of a two-way conversation. Invitations will go out in the mail next week, but if you read this, consider yourself invited.
First, those dreams. The bi-pap machine I use at night pushes air into my lungs when I inhale (at least I think that's what it's doing), and if the mask slips, I get a rush of air aimed at my face. Last week some time I woke up with the air rushing past, dreaming that I was headed downhill on my bike at 20 mph. Delightful! But last night's dream was even better (and had nothing to do with the bi-pap machine). It was a whole bike ride with friends on familiar roads around Madison. The best thing about it was that the route, which had several good down-hills, had no up-hills! So even though I had cancer, and difficulty breathing, I had no trouble at all with this ride. It was a real pleasure.
Now you bikers need to spend the winter finding that route for me! Not on your bikes (though I have seen a few crazy people heading past my house in the past few days, on the rutted ice, to the bike path. I'm sure they think they have full control of their bikes, but what about the drivers of the cars they meet?)
To give you non-Madisonians a sense of the road (and sidewalk) conditions here since our snow-and-ice storm on Saturday: yesterday I walked across the yard to the compost bin on top of 4-6 inches of snow, capped by a crust so thick it didn't even crack! When the junk was falling on Saturday afternoon and evening, I stayed in the house and wrapped Chanukah presents instead of venturing out to the orchestra concert I was supposed to play in on campus. Sunday morning, having been in deep denial about the approach of winter and the need to arrange shoveling help, I looked out the window to see two neighbors, Jack O'Maera and Michael, a very fit guy across the street whom I don't even know, attacking my sidewalk and front walk and driveway entrance with a vengeance. I burst into tears. Later, I saw Susie O'Maera, who's about 10, I think, working on the sidewalk. And someone--I don't know who--also did the route from the garage to the back door, which is the way I usually get into the house. Thank you all!
Speaking of thanks-- in the past couple of weeks, two people have just dropped by the house, without even calling, and I really enjoyed their visits. In both cases, they were coming by to drop something off, and I happened to be home. But it made me realize that this is a nice, spontaneous kind of get-together (and kind of un-American, not part of our ordinary culture, where we make elaborate plans, or at least call ahead). So if you get the urge, come by. If I'm busy, I'll let you know it's not a good time. And if I'm not home, which I'm often not, leave a note.
One last thing: those of you who will be in Madison on December 23, save the date! I'm having my annual solstice party that afternoon/evening, 4-9 PM. I'll provide latkes and drinks; you bring a solstice food (something that means the season to you) and be prepared to go shoeless. Two things will be different this year: most important, my good friends Janet Zimmerman and Diane Lauver are helping me get ready for the party. And also, it's not going to be possible for me to make myself heard over the din of the assembled multitudes, so bring a little anecdote to tell me, in lieu of a two-way conversation. Invitations will go out in the mail next week, but if you read this, consider yourself invited.
Thursday, November 29, 2007
Chemo benefits--and cost
Hello blog-readers! I'm delighted to report that the CT scan I had yesterday showed that, as I thought, the chemo is working to shrink the tumors, at least a little. I feel so much better than I did in mid-September, before I started back on chemo, that I thought it had to be working. In fact I was so un-stressed-out about seeing the oncologist this time that my blood pressure was only 116/60, or something ridiculous like that. But it was nice to have it confirmed.
But the cost! Forget about side effects-- I mean the dollar cost of this therapy (oxalyplatin, for those who like details). I learned today that it is $14,000 per month! It's entirely covered by insurance--Medicare, in my case. But it's kind of breathtaking to think about whether one's life is "worth" so much money. When my father was in the hospital, just before he died, he was adamant about refusing even relatively routine tests--a CT scan of his head, I think was one--on the grounds that we spend way too much money on the last six months of life, and it would be money much better directed toward prenatal and infant care so that perhaps the US would join other developed countries in reducing infant mortality. My dad was adamant that I read a book he'd just read on the subject of rationing health care in this way.
At the time, of course, I said, "But you're talking about public policy, and we're talking about you. Two different things." And of course they are two different things--and I'm not going to stop chemo that's improving my quality of life, just to save Medicare $14,000 a month that wouldn't go to prenatal or infant care anyway. But it did give me pause.
And I'd be very interested in your comments on this. You don't need to be a "member" of anything to comment. Just hit the comment button and post your reaction. I will be moderating the comments, but be assured that anything you say about this will be published.
And hey-- thanks for paying your taxes and contributing to my improved health!
But the cost! Forget about side effects-- I mean the dollar cost of this therapy (oxalyplatin, for those who like details). I learned today that it is $14,000 per month! It's entirely covered by insurance--Medicare, in my case. But it's kind of breathtaking to think about whether one's life is "worth" so much money. When my father was in the hospital, just before he died, he was adamant about refusing even relatively routine tests--a CT scan of his head, I think was one--on the grounds that we spend way too much money on the last six months of life, and it would be money much better directed toward prenatal and infant care so that perhaps the US would join other developed countries in reducing infant mortality. My dad was adamant that I read a book he'd just read on the subject of rationing health care in this way.
At the time, of course, I said, "But you're talking about public policy, and we're talking about you. Two different things." And of course they are two different things--and I'm not going to stop chemo that's improving my quality of life, just to save Medicare $14,000 a month that wouldn't go to prenatal or infant care anyway. But it did give me pause.
And I'd be very interested in your comments on this. You don't need to be a "member" of anything to comment. Just hit the comment button and post your reaction. I will be moderating the comments, but be assured that anything you say about this will be published.
And hey-- thanks for paying your taxes and contributing to my improved health!
Tuesday, November 20, 2007
Gratitude
I should be packing for my trip to DC, but I've been thinking all day about writing one last post before I leave both Madison and the blog for the weekend. I'm calling it "gratitude," though I think that word's more than a little over-used these days. Isn't "thanks" good enough anymore? But "thanks" isn't exactly an attitude, and "thankfulness" has a kind of made-up, awkward quality to it. Anyway, here are a few of the things I'm thankful for--all the time, not just in this week of gobbling good food:
The radiation therapy that helped cure my Hodgkin's disease in 1982, and no doubt caused the tumor that grew in my stomach, smack in the middle of the radiation field. It enabled me to live long enough to raise my sons, who were 3 and 6 when the Hodgkin's was diagnosed, and to see them become young men of whom I'm very proud.
The health insurance I was able to get through my former employer, the State of Wisconsin. Also, Medicare-- that "socialized" medicine option for those of us who are disabled or over 65. Everyone should have such options.
My highly-skilled and very compassionate doctors, nurses, and other health care providers.
The nearly three years since I was diagnosed with stomach cancer, and especially the past 15 months, since I learned it had spread to my lungs. Recently, someone looked deeply into my eyes and said, a little too soulfully for my taste, "You're on a journey." I wanted to say, aren't we all? Because of course we are, from the moment we're born. But it's a real gift to have the nature of the journey so impressed on you that you not only want to live fully, consciously, without regret--but actually try to!
The technological advances that make it possible for me to communicate without much of a voice. (Big concession from a would-be Luddite.)
And most important, the friends and family who provide emotional and physical support in whatever way they can: through e-mail, little gifts, dinner invitations, offers of rides, prayers.... Too many ways to enumerate!
May you all have a wonderful Thanksgiving with your friends and loved ones, and may you gather back here next week when I will have some suggestions about how we can create a real discussion in the comments section about realities (illness, dying, death, the benefits of socialized medicine, to name just a few) most of us find hard to face.
The radiation therapy that helped cure my Hodgkin's disease in 1982, and no doubt caused the tumor that grew in my stomach, smack in the middle of the radiation field. It enabled me to live long enough to raise my sons, who were 3 and 6 when the Hodgkin's was diagnosed, and to see them become young men of whom I'm very proud.
The health insurance I was able to get through my former employer, the State of Wisconsin. Also, Medicare-- that "socialized" medicine option for those of us who are disabled or over 65. Everyone should have such options.
My highly-skilled and very compassionate doctors, nurses, and other health care providers.
The nearly three years since I was diagnosed with stomach cancer, and especially the past 15 months, since I learned it had spread to my lungs. Recently, someone looked deeply into my eyes and said, a little too soulfully for my taste, "You're on a journey." I wanted to say, aren't we all? Because of course we are, from the moment we're born. But it's a real gift to have the nature of the journey so impressed on you that you not only want to live fully, consciously, without regret--but actually try to!
The technological advances that make it possible for me to communicate without much of a voice. (Big concession from a would-be Luddite.)
And most important, the friends and family who provide emotional and physical support in whatever way they can: through e-mail, little gifts, dinner invitations, offers of rides, prayers.... Too many ways to enumerate!
May you all have a wonderful Thanksgiving with your friends and loved ones, and may you gather back here next week when I will have some suggestions about how we can create a real discussion in the comments section about realities (illness, dying, death, the benefits of socialized medicine, to name just a few) most of us find hard to face.
Sunday, November 18, 2007
Comments
I think I have figured out how you can comment on the content of this blog without sending me an e-mail message. I will be moderating the comments; what you write may or may not get "published" on the comments page, depending on how I feel. (This is my blog, after all. If you want total freedom of speech, set up your own blog!) If I end up being overwhelmed by the task of moderating comments (not too likely), I'll just disable this function.
So-- leave a comment here, if you'd like!
So-- leave a comment here, if you'd like!
Saturday, November 17, 2007
I Do Exist!
Here they are!The problem wasn't my techno-naivete, but a Blogger problem that thousands of people had & Google quickly fixed. (On a Saturday-- they do work hard. Sarkozy would be
envious.)
Top to bottom: 1. Reading at the Capital BookFest in Largo MD, early October. Photo by Susie Strasser.2. In Nate Ela and Meghan Morris's apartment in Somerville, early October. Photo by Nate Ela.
3. Lake Effect Poets' reading at the Wisconsin Book Festival, Madison's Overture Center, mid-October. Left to right: me, Catherine Jagoe, Alison Townsend, Robin Chapman, Susan Elbe. Photo by Jed.
4. Me reading (slow, soft, and gasp-y) Grace Paley's poem, "Here," from the anthology Robin and I edited, On Retirement: 75 Poems, at the Book Festival. Photo by Jed.
5. Reading one of my poems, Catherine listening, Photo by Jed.
How to Subscribe - and photos?
I just disconnected myself from the chemo pump I have to wear for 46 hours after each bi-weekly chemo infusion at the clinic, and to celebrate, I'm returning to the task I tried (unsuccessfully) to accomplish yesterday: posting a little slideshow of recent pictures, mostly of me reading at various venues. I've discovered that unless people actually see or touch me, they don't seem to be certain I exist. This is particularly true of out-of-towners, of course; but even local friends I haven't seen recently seem eager to see me. Well, OK, but I don't know if I've got the technology down. We'll see. You'll see.
Also, some of you have e-mailed to say you don't understand what happens when you click "subscribe." I don't, either, never having subscribed to a blog. Who knows, maybe this post will just show up in your e-mail in-box. Let me know.
And now--ta dum!--some pictures....
Well, maybe I don't exist. The pictures I thought I uploaded don't seem to be here, and I got some sort of "securityToken" saying the action I tried to take couldn't be accomplished. I'll try again, but don't hold your breath!
Also, some of you have e-mailed to say you don't understand what happens when you click "subscribe." I don't, either, never having subscribed to a blog. Who knows, maybe this post will just show up in your e-mail in-box. Let me know.
And now--ta dum!--some pictures....
Well, maybe I don't exist. The pictures I thought I uploaded don't seem to be here, and I got some sort of "securityToken" saying the action I tried to take couldn't be accomplished. I'll try again, but don't hold your breath!
Thursday, November 15, 2007
Beginning to Blog
November 15, 2007 - This seems like a very odd thing for me to be doing. I've tried to avoid blogs, even friends' blogs, even the excellent TomDispatch blog which still arrives by e-mail. Seems to me they just suck up time, and how much time does any of us really have?
But here I am, with vocal folds paralyzed by tumors caused by metastatic stomach cancer, pretty much unable to speak except in a very soft, very whispery, very low voice, and pretty much unable to be heard except in very quiet places, trying to figure out how to communicate with people. So I've added text-messaging on my cell phone and instant messaging on my computer to the e-mail I've done for years. And since I am, after all, a writer--why not try a blog? The trick--since virtually all of my friends and family are over the age of 15--is to get the technically naive and even the technophobes to learn these new tricks.
So I'm using this evening, recovering from my latest chemo infusion, to start a blog. For now, no bells or whistles (or photos, either). But eventually.... who knows what you may find here!
And for those of you who may be curious, the next CT scan is after Thanksgiving, November 29. I'm pretty sure this chemo is working, since I can breathe a lot better than I could before it started. But I'll report the results here.
But here I am, with vocal folds paralyzed by tumors caused by metastatic stomach cancer, pretty much unable to speak except in a very soft, very whispery, very low voice, and pretty much unable to be heard except in very quiet places, trying to figure out how to communicate with people. So I've added text-messaging on my cell phone and instant messaging on my computer to the e-mail I've done for years. And since I am, after all, a writer--why not try a blog? The trick--since virtually all of my friends and family are over the age of 15--is to get the technically naive and even the technophobes to learn these new tricks.
So I'm using this evening, recovering from my latest chemo infusion, to start a blog. For now, no bells or whistles (or photos, either). But eventually.... who knows what you may find here!
And for those of you who may be curious, the next CT scan is after Thanksgiving, November 29. I'm pretty sure this chemo is working, since I can breathe a lot better than I could before it started. But I'll report the results here.
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