In Lieu of Speech

Judith Strasser, 1944-2009

2009-01-29T21:34:00.002-06:00

Judith Strasser, Madison, born September 30, 1944 in New York City to Alexander Strasser and Maxine Hochberg Strasser, died at home in Madison on January 29, surrounded by family. She was raised in Pittsburgh, Pa. She received her BA in history from Reed College, Portland, Oregon in 1966 and her masters in communications research from Stanford University in 1972. She married Steve Ela in September, 1972 and they traveled the United States in a van for over a year before settling in Davis, California. Their son Jed Ela was born in California in 1975 and turned one as they crossed the Rockies to their new home in Madison. Their second son Nate was born in Madison in 1978. Judith and Steve were divorced in 1989.

Judith was instrumental in the creation of the Madison Children’s Museum, inspired by the volunteer work of her mother-in-law Janet Ela for the old Madison Art Center, now the Madison Museum of Contemporary Art. Judith raised the money necessary to create the Children’s Museum’s first home on South Bedford Street and to hire the museum’s first permanent staff member. Judith has also contributed her time to WORT, the Wisconsin Public Radio Association, Madison Literacy Council, and the Wisconsin Coalition Against Domestic Violence, among other organizations. She was employed as a grant writer and grants administrator by the Wisconsin Educational Communications Board from 1983 to 1985. In 1985, she produced an award-winning documentary on women judges in Wisconsin, and for the next five years worked as an independent scriptwriter and producer for Wisconsin Public Radio. In 1990, she was hired as a producer and on-air interviewer for “To the Best of Our Knowledge,” a nationally syndicated weekly public radio program. She retired in 1999 to pursue a career as a writer. Her books include two prose volumes, Black Eye: Escaping a Marriage, Writing a Life and Facing Fear: Meditations on Cancer and Politics, Courage and Hope. She has also written two collections of poetry, Sand Island Succession: Poems of the Apostles, and The Reason/Unreason Project, which won the Lewis-Clark Expedition Award. She is co-editor with Robin Chapman of On Retirement: 75 Poems.

Judith was successfully treated for Hodgkin’s Disease from 1981 through 1982 with chemotherapy and radiation. In February, 2005, she was diagnosed with stomach cancer, probably a consequence of the earlier radiation treatment, which had enabled her to raise her sons from the ages of 3 and 6 to their adulthood -- an easy trade-off, Judith always said.

Judith’s survivors include her sons, Jed Ela of Los Angeles (and his fiancée Nazgol Ghandnoosh) and Nate Ela of Bogotá, Colombia (and his partner, Meghan Morris); her sisters Susan Strasser of Takoma Park, Maryland (and her husband Bob Guldin), Paula Strasser of Fallbrook, California and Erica Ryon of Saint Louis (and her husband Roger Ryon); and her niece Maxine Ryon. She will be missed also by her many friends: poets, cyclists, dragon boat paddlers, members of Congregation Shaarei Shamayim, the Walrus Club, and partners in her numerous other activities.

A memorial service will be held at the First Unitarian Society, Madison, on February 14, at 1:00. In lieu of flowers, contributions may be sent to HospiceCare, 5395 E. Cheryl Parkway, Madison 53711.

Changing Voices

2009-01-26T16:29:00.001-06:00

Dear readers of “In Lieu of Speech” –

This is Susie Strasser, Judith’s sister. I'm writing to you from Madison, where I was scheduled to come on Thursday, but hearing from Nate on Saturday that Judy was declining fast, I arrived yesterday; Jed and Nazgol and Meghan came last night, and my husband Bob will be here tomorrow.

Perhaps the most important things to tell you are that Judy is not in pain and that she is at this point entirely present. She has lost interest in the news and in reading -- though she definitely finds that curious -- and has asked local people not to visit now that we are here. She is completely aware of what is happening, clearly listening to everything though she does close her eyes pretty frequently, and very much Judy Strasser. Nate has been reading her email to her, as well as comments on the blog, and she is definitely interested in, so keep commenting. She says she plans/hopes to stay as present as she is now until she dies, and that she hopes/plans/expects to die not long after Bob gets here and we've all had a chance to be together for a bit.

And the hospice nurse says she may well do it as she plans.

We will keep you up to date. Thanks so much for all of your love and support.

Remarkable Day

2009-01-20T15:21:00.003-06:00

When I saw Dr. Holen at 11 AM today, I asked him just one question: could he give me any reason, other than the astonishingly low chance of success, for me to do more chemo. No, he said, in my condition (which is very frail--I weigh just over 90 pounds, need oxygen to help me breathe, etc.) it would hurt more than help me.

Then it's a no-brainer, I said.

Nate and I walked out to the oncology waiting room, which was jammed with people (because of the holiday yesterday), all watching TV and grinning. Obama was just about to take the oath, and we all watched that and applauded and then watched the speech. I kept thinking how amazing that so many of these people (like me) had survived to see this day. It was really, despite the decision, a very happy occasion.

I am all set up with hospice, which has been here several times; I have a classy walker and a wheelchair I will use to get to the Bobby McFerrin concert Thurs at Overture with Nate and Janet, and I feel very lucky that I get to see Obama inaugurated, but won't have to watch the debacle to come!

Choices

2009-01-19T16:26:00.004-06:00

On Saturday afternoon, I did something quite extraordinary: sat in bed and listened, really listened, to the entire Metropolitan Opera broadcast of John Adams's amazing "Dr. Atomic." This is his telling of the first atomic test, and of J. Robert Oppenheimer's role, and anguish, about his role in the development of the A-bomb.

I wasn't at all sure that I could listen. I don't like Adams's earlier opera, "Nixon in China," and (like most people, I imagine), I've never sat down and listened to an entire opera broadcast. But "Dr. Atomic" is wonderful, and this was also a trial for something I plan to do a lot of in the months ahead--really listen to music. In fact, as I type, Nate is assembling my new Bose Wave radio/CD changer.

And it also seemed important that I think about the people--from Marie Curie to the citizens of Hiroshima and Nagasaki to, yes, me, who have or will succumb to various kinds of radiation. And to think about choice. Because even though Oppenheimer questioned whether he had a choice about working on the bomb, of course he did. We all do.

Tomorrow I will choose between the only alternatives I have left, as far as the cancer is concerned: begin a course of irinotecan, the only chemo for stomach cancer that I haven't tried, or do nothing. There are many problems with the drug: it's the one that's very likely to cause diahrrea; they could only give me a 50% dose; it has a 15-20% chance of working; even if it worked, it would give me only a few months.... Of course, the alternative--do nothing--likely means dying in very few months.

Tomorrow I will see Dr. Holen nd once again talk about this choice. (We, with Nate, also discussed this last Thursday.) Because I know a lot of you will not want to wait a week to hear my decision, I'll post an update tomorrow afternoon.

As Oppenheimer knew, choice is difficult. But it's also important, and good.

Ironically, my appointment with Dr. Holen is scheduled at the exact time of Barack Obama's inauguration. We all made a very good choice!

Bulletin: :No trial, no Chicago

2009-01-14T14:11:00.003-06:00

Yesterday (Tuesday), literally five minutes before we were about
to leave for Chicago--Nate was loading and warming up the car--
Dr. Kang called to say I am not eligible for the trial.
Apparently, although I have no symptoms, the EKG showed
that I have a damaged mitral heart valve, and it would
be too dangerous for me to be in the study.

About 5 PM last night Dr. Kang called again to confirm that
the head of the study, Dr. Raitan, had made the final decision
on this.

I have an appointment tomorrow (Thursday) at UW to see
what's next.

Am I surprised?  No.  Angry about the timing?  For sure.

On to Chicago

2009-01-12T10:44:00.003-06:00

Vacation is over and, as promised, this post will focus on medical stuff.

Tomorrow, Nate and I will drive to Chicago so that I can start the Phase 2 study bright and early (7:45 AM) on Wednesday. Here's the outline of the study design:

Everyone starts on the drug, brivanib, which is designed to cut off blood flow to solid tumors. The drug is oral, and taken every day. After three three-week cycles, participants have a CT scan to see if the drug is working. The researchers expect it to work in a third of the participants; to not work in a third; and to be equivocal in a third. If it's working, you continue on the drug. If it's not working, you're out of the study. If they can't tell whether it's working, you are randomly assigned to either a placebo or the drug. If you're in this group, and start to do worse, they "unblind" you, and, if you are on the placebo, put you back on the drug.

Of course, there are no guarantees that the drug will work, and no knowing what the side effects may be, but nothing ventured, nothing gained.

The study requires that I be in Chicago every Wednesday in January, although the 21st and 28th are very short visits, and two Wednesdays in February, one of them a 7:45 AM appearance. This means that I will often be gone from Madison two or three days mid-week, depending on the weather. We have a wonderful place to stay in Wilmette, with my junior high friend Barbara Stock, and since Wilmette is pretty far from the hospital, the cancer resource people at the hospital have found us a good rate at a downtown hotel for the Tuesdays before the 7:45 AM appointments. Nate is staying in Madison for an indeterminate time to do the driving (and much else)--thanks to his fellowship sponsors at the Harvard human rights program, he can work from here as well as Bogota, at least for a time. And thanks to Meghan, who is in Bogota, for lending him to me!

How I feel: Still weak and often tired--it seems easier to sit around than to do any exercise, though I know that the only things that will increase my strength and energy are eating and exercise. Fortunately, with a lot of prompting from Nate, I am beginning to eat decent amounts of food again. (In the hospital and for a couple of weeks afterward, I ate almost nothing.) He's a great cook--this morning I had a bit of a truly gourmet mac and cheese casserole he made. And I am hoping to get back to the gym next week. Maybe before then I can motivate myself to do some easy exercises at home.

In summary, it's a long, slow slog, but the direction seems right, and I'm optimistic.

More vacation!

2009-01-05T08:00:00.001-06:00

Decided to write this post on Sunday in LA and schedule it for "publication" tomorrow so I don't have to worry about it when I get back to Madison.

The past week has been wonderful. After Jed's marathon driving feat from LA to El Paso, and meeting Nate at the El Paso airport, we headed the car toward Big Bend on the 29th (was that Sunday? or Monday?--it's been the sort of vacation where you lose track of the days). We didn't stay in the national park, but rather at Lajitas, a beautiful but now financially troubled fancy resort just outside the state park, which I think is even larger than the national park. In November, a flood wiped out the resort's golf course (which had been its main attraction, I think), but Nate found a bunch of articles on the internet that suggested the financial problems had begun a few years ago. No need to go into details--for us, the place was just fine. More than just fine--luxurious. I had a really good massage at the spa; we drove into the national park, including the Chisos Mountains, and saw quite spectacular scenery; we ate well and slept on terrific beds; Jed and Nate bought me a painted walking stick that helped me negotiate short walks (from the parking lot to the dining room, say), which were a challenge at 4,000 feet.

We celebrated New Year's eve with room service and TV--and then Nate asked if I would like him to fly back to Madison with me and drive me to Chicago for my appointment on Thursday. I was overjoyed, because I had been spending a lot of time trying to figure out how to deal with the trip if it was really snowy. Instantly, I stopped obsessing about it. I really can't express how grateful I am to both Jed and Nate for helping me through these difficult times--or explain the many, many ways they've helped me do what I need to do without losing or compromising my dignity. (What little I have left!)

On January 1 we left Lajitas and drove to Marfa, Texas, an odd little piece of Williamsburg (Brooklyn) that's about three hours by car from anywhere. In the 1970s, Donald Judd, a minimalist artist, bought about half the town and an old Army base and went about creating his art work and, not coincidentally, an artists' colony, in the middle of west Texas. Jed had been here five or so years ago, and he knew that the tours of the Chinati Foundation, which houses Judd's art, involved a lot of walking. But the Foundation was pretty accommodating of my needs. On the morning tour, which includes walks through huge buildings where Judd's big--and each subtly different--machined aluminum boxes are lined up, I was accompanied by Yolanda, one of the office staff, who carried a folding chair that I could sit on whenever I needed to rest. The buildings have huge windows, and the sun, which is pretty intense even in early January, reflects off the boxes, creating interesting effects of shadows, translucence, and so forth. Just sitting and looking at the boxes is almost meditative. Lovely.

In the afternoon, Nate and Jed figured out how to borrow a wheelchair from the two-room Marfa medical clinic, and we essentially got a private tour of the artworks, the highlight of which are fluorescent light installations by Dan Flavin. I had seen one of his installations a few years ago at the LA County Museum, but it was a lot of fun to be wheeled down the long halls into the tunnel-like recesses full of light.

In Marfa, we stayed at the historic hotel, a really gorgeous building with a downstairs lounge warmed by a fireplace, where I could hang out. Our room was quite nice, but up 24 steps, which I chose to climb once a day. (The elevator stopped operating decades ago. Jed offered to carry me up the steps, but I assured him that, even at 4,000 feet, I could climb them myself. I think he was amazed that I did, but they were not much of a problem. Once a day.)

And then, yesterday, Jed and Nate shared the 14 hour drive back to LA. My sister Paula is coming late this afternoon and staying for dinner, and tomorrow, Jed returns to law school and Nate and I return to Madison. I haven't checked the weather; I just assume it will be cold, very, and snowy, likewise.

We head to Chicago on Wednesday, and I have my appointment to sign the consent form for the Phase 2 study on Thursday morning, so presumably next week I will have something substantive to say about the medical aspect of this journey. See you then!

Happy New Year

2008-12-29T09:27:00.004-06:00

Just a short post today to let you know that Jed, Nate, and I met up last night in El Paso and are headed to Marfa and on to Big Bend for the rest of this week. The trip has been amazingly easy for me--the hardest part was getting a hundred yards or so from the Van Galder bus outside Union Station in Chicago, through piles of rutted snow, into the station itself. But from there--duck soup! Red caps helped me onto an elevator, down to the very civilized lounge for sleeping car passengers, and then several hours later, onto a little cart which took me and my luggage right to my sleeping car.

Two days later, a red cap/cart took me, relaxed and happy, into LA's Union Station, where my college friend Claire met me. Claire and I, joined by our friend Deborah, spent two fine days mostly sitting around talking--joined by Jed and Nazgol for dinner on Friday as they were driving back to LA from northern California. And on Saturday, Debbie dropped me off at their apartment on her way home to San Diego. We spent the afternoon doing errands, including getting a smashing pair of red jeans--my Chankah gift from Nazgol--shortened. And we watched the sun set over the Pacific--lovely!

And yesterday at about 5:30 AM, Jed and I left for El Paso. He did most of the driving, an amazing feat, though I did take the wheel for an hour or so through Phoenix--the first driving I've done since early December. Glad to see it's a skill you don't lose! Got here in plenty of time to meet Nate's plane--he'd flown from Morocco to Madrid to Chicago to El Paso, with no problems.

So, off we go on our adventure!

Next Monday I will be traveling all day and have no access to the internet, so my next post will likely be on Tuesday, January 6. Have a great week and a happy new year!

Gifts

2008-12-22T14:12:00.004-06:00

Last week, I got three wonderful gifts of a medical sort. First, the follow-up X-ray of my lungs was much improved after the pleurodesis, and the doctors agreed I was not crazy to get on the train tomorrow and head west. Second, they suggested that one of the reasons I was so tired was that I was marginally anemic, or maybe just plain anemic, and marginally in need of more red blood cells. So Friday I had a transfusion, and it has made me more peppy, though certainly not hugely energetic. And third, I learned, also on Friday, that I am still being considered for the Phase 2 study at the University of Chicago. I am to be there on Thursday morning, January 8, to sign the consent form and begin the further screening process. This means leaving Madison on Jan 7, less than two days after I get home from my trip to Clifornia and Texas--I just hope by then the weather has moderated a bit.

Obviously, this is all good news, and the sorts of gifts I can never repay. But it does occur to me that all you healthy people out there can help by going to your nearest blood bank and making a donation. I used to do this regularly as a young adult, and really, it's one of the most rewarding things I've ever done. They treat you like a very special person (which you are), and you know that you're making a really valuable contribution to someone's health.

Now I am in the very strange position of heading out of Madison to see friends and family over the holidays (and my sister Paula's birthday) and not taking a single gift with me. Not even a house gift of Wisconsin cheese or chocolate. I have barely been out of the house since the beginning of the month, and then chiefly on trips back and forth to the hospital and clinics. I haven't driven in weeks. And internet shopping seems particularly heartless to me. I've alerted my family to expecct their Chanukah gifts by Groundhog's Day. Still, it feels weird.

But I have seized on a conversation I had recently with my neighbor Bridget, a self-confessed "ambivalent Catholic," who was describing the priest's message at mass a week or two ago--about how this season is about presence, not presents. It does seem egotistical, if not egomanaical, to suggest that my friends and family shoulde be satisfied with my presence. But I know, from my experience the last couple of weeks, that people's presence is really what it's all about. I have been helped by so many people, in so many ways--from the doctors who made sure I got to my book party, to the hosts of the book party, to friends who brought food and comfort, did laundry, shoveled snow, drove me to the clinic and hospital and also on a little round of errands, helped me prepare for and totally cleaned up after last night's mini-solstice party... these people's help and their simple presence in my life has literally made it possible for me to function and progress beyond "invalid" status. These are the true gifts this season.

As the light grows stronger and the days longer, my wish for all of you is that people are present in your lives, as they have been for me. In the last chapter of Facing Fear, I write about the importance of community. But the chapter is really about the importance of other communities, in other places. I wish I had known, when I was writing that chapter, how much I would come to value my own community, my friends and neighbors. I would have included you all in the book.

Thank you. May you have holidays full of the presence of good friends and family.

Lungs and Friends

2008-12-15T15:21:00.003-06:00

Well, friends come first, and I will write about them, but I know a lot of you are waiting for an update on my lungs and hospital stay--so I'll fill you in briefly.

I was in the hospital until Wednesday night. This was a shorter stay than I'd expected, because on Monday, when the surgeons poked around in my chest, they discovered a tumor blocking the bronchus in the right lung. This meant they did not want to (could not?) do pleurodesis to that lung, but instead decided to do something else, like ablate the tumor with a laser, after New Year. I have to say, knowing the difficulty of recovering from pleurodesis to one lung, that I can't imagine what recovering from two such procedures would be like.

For two days after I got home, I could barely get out of bed. My big adventure on Friday was to walk (once) from my bedroom to the den and the study and back to the bedroom. Anyone who's been on my second floor knows that amounts to maybe a hundred feet. And just motivating myself to do something as simple as put on a clean pair of underpants already set out on my bed took about an hour.

I think, looking back, that some of this had to do with lingering effects of anesthetic, but some also had to do with energy. Finally on Saturday I was able to take a bath and go downstairs. (Down wasn't the problem; the question was could I get back up.) I just stayed down for an hour or so, but yesterday (Sunday) I spent pretty much the entire day downstairs, entertaining a succession of friends who'd come with food, or to shovel snow, or to bring an article about Big Bend, or to do laundry, or to chat. I went upstairs five or six times during the day, and by the last few trips, could go up without stopping to rest. So I'm definitely getting stronger, but very slowly.

Tomorrow's goal is to actually leave the house. I'm still hoping to be getting on a train to LA on the 23rd, but I'm not going to make the final decision until Thursday afternoon, when I have an "after hospitalization" follow-up appointment with the oncologist.

Now, about my remarkable community of friends and neighbors. Obviously, without help, I would have been stuck in bed with no food for 48 hours. Although I'd left the back door unlocked so people could come in even if I was upstairs, the long driveway was snowy and slushy, hard to navigate. I had a lot of dirty clothes--the washer is in the basement, and since my dryer is broken, wet clothes have to be hung on lines. (It's so dry here in the winter that even heavy towels dry overnight.) You get the idea.

Well, the list of people who just figured out what needed to be done, and jumped in to do it, is very long: led by Janet, my next door neighbor Bridget, and Diane, but including many more--Liz, Dave and Kim K, David T, Tracy, Dennis, Robin and Will, Catherine, Jesse Lee, Sandy. And I'm terribly afraid I'm leaving someone (or more than one) out. The farther back I try to remember, the harder it is--effects of anesthesia, I think.

What I can't forget, fortunately, is the truly spectacular book party last Sunday. It was such a warm and wonderful gathering of friends and fans, including several people who were instrumental (whether or not they knew it) to the writing of Facing Fear. Friends had followed my sister Susie's request to bring an amaryllis on her behalf, and they found what has to be the tallest and most flower-full plant in the city of Madison. It's still blooming in my bedroom, after keeping me company at the hospital for half a week.

The memory of the party warmed me through the week, and will continue to buoy my spirits forever. And so will my gratitude to the wonderful people who are helping me get through this difficult time. Thanks so much to everyone!

Hospital Days

2008-12-08T07:00:00.003-06:00

Yes, you read that right. I have been comfortably ensconsed in my single room at UW Hospital (views of the Capitol and Lake Mendota, wi-fi, room service meals) since Thursday evening, and I will be here through most of the next week. When I got back from Thanksgiving, I decided that I'd better find out why I was so exhausted and whether the MDs could make it easier for me to breathe. Things had been slowly getting worse--I really should have seen a doc before Thanksgiving, but I didn't want to screw up my trip east, so I just ignored what was going on. But Wednesday, after shopping for chicken soup ingredients and getting my flu shot, I came home to make the soup and had to sit down at the dining room table to cut up the veggies. And then later I had to call the neighbors to ask if they'd wheel the trash cart out to the curb. So I decided I should call the clinic Thursday AM.

The nurse, after consulting briefly with my primary care doc, said I should go directly to the ER. I was kind of surprised--I mean, don't we hear all the time that we should not go to the ER? Well, when I got there (dropped off by my friend Robin), I discovered that I had uttered the magic words: "I'm having trouble breathing." They had me in a wheelchair and whisked into an examining room and hooked up to oxygen within what seemed like seconds, and two teams of docs, first the medical service and then the oncologists, appeared minutes later. Then there was a nebulizer treatment and an x-ray, and then the conclusion that I had a pleural effusion in my left lung--fluid (caused by the tumors) built up in the pleural cavity, which is the space between the lung itself and the membrane that connects the lung to the chest wall. (I am learning so much anatomy! It's really fascinating.)

So the fluid had to be drained, and because they were also concerned about a blood clot that might have formed in the lung, I needed a CT scan. Somewhere in there I asked if I was going to be admitted to the hospital and they said yes. I explained that was all very well, but I needed to be out by Sunday evening because my friends Frank and Dolores Emspak and Janet Zimmerman were hosting a book party for Facing Fear. The on-call oncologists (a resident, a fellow, and the attending) who had been consulting with Dr. Holen, knew about the book and could not have been more helpful and accommodating. They drained 1.2 liters of fluid Thursday evening (which immediately eased my breathing) and also arranged for me to have the CT scan that evening. (Fortunately, there was no blood clot. I still haven't heard anything from U of Chicago about a phase 2 study, and at this point I'm not optimisic, but a blood clot in the lung would have definitely put the kibosh on it.)

Then they started figuring out how to proceed with the next steps, while still getting me to the book party. There are apparently three options for pleural effusions: repeated draining (not an especially painful procedure, but has to be done frequently because the fluid builds up rapidly); a permanent drain; or a surgical procedure called pleurodesis. This last is preferred for people expected to live longer than three months, according to a website I was checking for the spelling of the name. Pleurodesis is very strange, I think. The surgeon totally drains the fluid (even after they took 1.2 liters out, there was still more--it's too dangerous to take it all out at once). Then they blow (?) sterile talc and/or maybe antibiotics into the cavity, causing inflammation and scarring. Apparently if there's no space for the fluid to go, the tumor cells just don't produce any! I'd love to know who figured that out, and how they did it.

The thoracic surgeon prefers to do this procedure in an operating room, although I guess that's not essential. I told him (well, them--fellow and attending) that my goal was to go to LA on Dec 25, so they decided to try to find an OR on Monday morning. And they did! Working with the oncologists and my desire to go to the book party, everyone agreed that I could be in the hospital until Sunday morning, have a day pass, and then come back Sunday evening to be ready to go this morning. (Full disclosure: I'm actually writing this on Saturday evening, to be "published" on Monday. I suspect that the painkillers and anesthesia I'll be subject to would not generate a very coherent post.)

Today they will also put a drain in my right lung cavity, which has less fluid, but still some, and on Wednesday, they will blow talc into that cavity through the tube, which they will then remove. I think I will be in the hospital until some time Friday.

I asked the surgeon if I could fly on the 25th, and was actually delighted when he hesitated a little, giving me an excuse and permission to take Amtrak from Chicago and spring for a roommette! I actually love trains, and I will get to LA (if the train's on time) 12 hours earlier than I would have by plane--I think this is grand! After I spend a couple of days with my friend Claire, Jed and I will drive to El Paso to meet Nate, and we will have our Texas adventure--their gift for my (last September) birthday.

I know it sounds odd, but I think things couldn't be much better. I have had to give up the idea of the traditional big solstice party, since there are only ten days or so between getting out of the hospital and leaving for LA. But I'm still going to make latkes (fresh, not frozen) on the 21st, which is the first night of Chanukah as well as the solstice for the many friends and neighbors who've helped turn the past week, which could have been so dark, into a splendid display of light--running errands, visiting me, shoveling, and even doing my laundry! Not just odd--even sappy, because who could ask for anything more?

Thanksgiving Report

2008-12-01T19:44:00.005-06:00

Well, it's still Monday--and I did warn you that I might not gt to this post until evening. I got home about noon today, after a wonderful Thanksgiving weekend at my sister's in DC. Jed, Nazgol, and Nate were also there; Meghan stayed behind in Bogota to show the Colombians how to cook turkey. (Not really! I think she found it a little daunting to figure out how to visit her mom's and dad's families as well as Nate's in one four or five day trip to the US. Not to mention expensive.)

On Thursday, the six of us (Susie and Bob, Jed, Nazgol, Nate, and I) were joined for dinner by my aunt, who took the train from Philadelphia for the day, and five good friends of Bob's and Susie's, who have been at many other Thanksgivings. Nate was the youngest in our party, but the age range extended upward from 30, past my aunt, who is 83, to Dinah, 98, the mother of Bob's best friend Hank, whom he's known since grade school. A very lively crew, and everyone with every marble intact.

The highlight of the day, however, was Jed and Nazgol's announcement of their engagement! They will be married in LA on Labor Day weekend...so I definitely have a new goal!

Friday, Susie introduced us to SpaWorld, a Korean mega-spa in suburban Virginia. (Actually, Jed had been there for a bachelor party some months ago, and raved about it.) I was a bit apprehensive about this, thinking the humidity might make breathing pretty difficult for me. But the humidity didn't bother me, and anyway, SpaWorld offers a lot more than humidity and hot baths. There's the "poultice room," a huge area with mats on heated tile floors where people hang out and eat Korean food and make little forays into the surrounding saunas, each with a different feature. The only one I tried--not being a big sauna fan, ever--was one with a thick layer of marble-sized clay balls to dig into or lie on. Fun! We stayed at SpaWorld for something like six hours, and I don't remember ever being more relaxed. And on the way home, we stopped at Nazgol's uncle's house and had take-out Iranian food with him, his wife, and their two very smart sons who were about to celebrate their 7th and 9th birthdays.

Nazgol stayed at her uncle's for the rest of the weekend; the rest of us returned to Susie's and on Saturday we tried to see "Milk" as our traditional Thanksgiving weekend movie, but it was sold out. Instead, we opted for "Slumdog Millionaire." I'd read a bad review of it, and resisted going, but I really enjoyed it, and I think the others did, too.

Other weekend activities for me were pretty much confined to sitting on the couch or in the dining room reading, and seeing my old friend and housemate Julie who lives near Susie and came over for tea yesterday. I skipped the traditional Rock Creek Park walk--not enough stamina or breath.

Now that I'm home, I'm turning my attention to getting ready for my annual solstice party, which I will again host with the help of my good friends Janet and Diane. They are coming over on Thursday to help address invitations, so today's task involved getting the address list together and getting the invitation ready to duplicate--which helps explain why it took a while to get to this post.

Still haven't heard from Chicago, but I imagine I will before I write another post. Stay tuned.

Possible Phase 2 Study!

2008-11-24T13:32:00.004-06:00

The big news of the past week was my trip to the University of Chicago Medical Center on Wednesday to see whether I am eligible for any of their clinical trials. I had thought (and actually been told) that I would only be considered for Phase 1 studies--in fact the clinic where I was seen is the Phase 1 study clinic. But as it turned out, there's a possibility that I will actually be able to be in a Phase 2 study--one that does more than look at a drug for possible toxicity.

In general the trip was really good. It was interesting to see differences between two university medical centers--not that one seems better than the other, but just that they have different feels, Chicago much more urban and crowded, but still very efficient and humane; Wisconsin also efficient and humane but in a more spacious and gracious facility. It was also interesting to be in the position that so many of the patients I see at UW are in--from distant places, unsure of traffic and directions and whether they'll get to their appointments on time, and in a "foreign" environment (both the city and the clinic itself) that they have to navigate. Sure compounds the anxiety!

But the actual appointment couldn't have been more reassuring. I saw a Korean doctor, Peter Kang, who basically spent all afternoon (from about 3 PM until 5) with me, taking my history and explaining options and checking with various colleagues about possibilities. It quickly became clear that he and his boss, Dr. Ratain, who was in the clinic but whom I never saw, really wanted to get me into a phase 2 trial of brivanib, an oral drug that has been shown to inhibit growth of blood vessels that feed tumors and also (perhaps?) to kill tumor cells.

The only possible fly in the ointment is that I have a blood clot in my liver. The clot has been there for at least two months and when I saw him Nov 13 Dr. Holen didn't think that it was necessary for me to be on an anti-coagulant--a good thing, because that would have automatically made me ineligible for the study. The Chicago people, though, seem to think that if the clot has been around for several months and is stable, it would be safe for me to be in the study. So last Thursday I had UW fax them 31 pages of radiologists' reports on all my CT scans in the past 12-18 months (they already had the images of the scans on a CD I brought with me), and Dr. Kang or Dr. Ratain (the PI on the study) will talk to Dr. Holen, and they will make a determination. I thought the decision would be made early this week, and this morning I emailed the study nurse; he said (in a very noncommittal response) that he would get in touch with me next week to let me know when my next appointment is.

So I'm still up in the air about whether I will be in this study, but what was exciting was that it was so clear that they were working hard to figure out how to include me even though the exclusion criteria include blood clots.

If I am eligible for the study, I will start it after New Year's. They actually were ready to start me after Thanksgiving, but for the first cycle, I have to go to Chicago every week for four weeks, and I would have had to be at the clinic all day on Dec 31. When I explained that I was planning to be with my sons in Texas then, the study nurse suggested starting a month later. I was a little upset by the idea of putting off treatment yet again, but I talked with both Dr. Kang and (through a nurse) Dr. Holen, and they both assured me that the tumors are growing slowly enough that this should not be a problem. Dr. Kang emphasized that he couldn't make a decision for me and then told me how wonderful it had been for him to go to Korea last summer for three days at a resort with his whole family, whom he hadn't seen in several years. And of course in the long run, the trip with Jed and Nate is way more important than the month's delay.

I can give you more details about the study itself, but think I will wait until I know for sure that I am in. The fallback is a phase 1 study of avastin, an earlier-generation anti-angiogenesis drug that I think is FDA approved for kidney cancer. I have the details of that study but haven't read them yet, because the focus was all on the phase 2 study and I still have my fingers crossed, though I admit that they're getting a little numb in that position.

Meanwhile, I am collecting thing to be thankful for--chiefly, this week, friends. One of the reasons that I am willing to consider driving to Chicago almost weekly for a clinical trial is that my dear friend Barbara Stock lives in a big house in Wilmette, and I can easily stay overnight with her. We've known each other since junior high school--she was a year ahead, but we were on the newspaper staff, in Junior Writers club, and in other activities together, and we used to usher together for the Pittsburgh Symphony concerts. Barbara's still working, so we don't spend every minute together when I'm there, but we have a very easy and wonderful relationship. I spent Wednesday night in Wilmette before driving back on Thursday to Madison--it made the trip much easier. The weather was fine last week, but it did take nearly 4 hours to get from my house to the medical center, which is in Hyde Park, in south Chicago.

Winter descended on Madison last night in the form of an inch or two of snow that stuck. This morning I woke up to a sound that I first interpreted as a push lawnmower, but then realized, when I looked out the window, was someone shoveling. Later, my neighbor Kim Kantor was on my front walk with her shovel. I sure hope we don't get the amount of snow this winter that we did last--my neighbors did about three years' worth of shoveling my walk last year!

On Sunday, I was out of the house for a couple of hours, reading from Facing Fear at a local bookstore. When I came back, the last leaves had disappeared from my lawn, thanks to Laurie Greenberg and her daughter Alana. Great timing, and a real gift to be thankful for.

And I was also thankful for friends from many different circles (including TeamSurvivor, writers, bikers, and more) who filled the chairs at A Room of One's Own yesterday afternoon. It's not that I haven't read to tiny audiences, but it's so much more fun to introduce a bunch of people to what I've been doing! And I think Room sold quite a few books, which is a good way to thank them for the reading.

Finally, a shout-out to Janet Zimmerman and Ron and Bonnie Hennell, who came to the Community Orchestra concert Friday evening. I think they enjoyed it--and I especially enjoyed knowing that I wouldn't be dragging my cello all over Madison anymore. (Why didn't I stick with flute? Well, I doubt I'd have the breath to play a wind instrument now.) Janet carried my cello back to my car after the concert--one more thing to be thankful for!

Have a great Thanksgiving! I'll be out of town until Monday afternoon, so next week's post will appear Monday late afternoon or evening.

Olio

2008-11-17T15:07:00.005-06:00

No, not margarine. As crossword puzzlers know, an olio (with an i) is a collection of miscellany. And since I couldn't figure out a coherent way to present what I have to say, I decided just to list the items and call it an olio.

1. The health report. My medical records and I are going to the University of Chicago on Wednesday to find out whether their phase 1 clinic has any trials for which I am eligible. I really don't know anything more than that--don't know how long the appointment is, or how many doctors see me, or whether they will be able to tell me on Wednesday whether there is a trial for me. Presumably, I will have some sort of answer about a trial, or no trial, by next Monday.

2. The anniversary report. This week is the one-year anniversary of this blog. I'm amazed that I've actually been writing it for a year, but even more amazed that people (especially people who don't know me) are reading it. Just this week someone told me that her office-mate checks the blog every Monday. I can track the readership, or at least the number of hits the site gets, using Google Analytics, and I can tell you that last Monday and Tuesday, November 10-11, there were nearly 100 hits. (Ninety-seven, to be exact.) As you might expect, the number of hits is highest on Mondays and then drops off during the subsequent days, trending slowly down to about 13 or 14 hits on Saturday and Sunday and then climbing steeply on Monday. This happens every week, so the usage graph has a very regular pattern. Except that the week before last, usage was down (relative to other weeks) on Monday and Tuesday (Nov 3-4), and the graph was pretty flat all week. This is the first--and only--time that's happened. I guess people were otherwise occupied!

3. Weather report. It snowed earlier today and the lawns still have snow on them. I guess winter is here. Sigh.

4. Performance report. A reminder that I will be reading at A Room of One's Own in Madison this Sunday at 2 PM. I won't be reading anything you've already heard, I promise! I'm also going to be playing in the Madison Community Orchestra concert at the Mitby Theatre (MATC near the airport) at 7:30 PM on Friday. This is most likely the last time I'll play cello in public (not that you would actually be able to hear me, I hope, even if you were at the concert). This past weekend I decided that the stress of getting to rehearsals and then staying awake enough to actually play is just too much. I'm not a very good player anyway, and when I get tired, any technique I have simply disappears. Last Tuesday I was so tired by the end of rehearsal (9:30) that I could barely hold the cello. And rather than being a rewarding experience, playing is simply embarrassing. So why put myself through that?

5. Writing report. This week I am guest writer for an interesting web site, Great Lakes Town Hall (greatlakestownhall.org). Each morning I will post a short essay about the Great Lakes; if you hurry, you can still read today's before it's replaced by tomorrow's!

And that's it for this week's miscellany. Hope to see some of you on Sunday.

Chicago? - and more

2008-11-10T15:17:00.005-06:00

For you Madison blog-followers: I will be at A Room of One's Own, 307 W. Johnson Street, at 2 PM Sunday, November 23, reading from and talking about Facing Fear. I plan to reflect on lessons from the recent election and to offer tips on how to cope with anxiety in the face of the current financial crisis. I'll also talk about life as a cancer survivor.

And on that subject, here's the latest from the world of what's next. I saw Dr. Holen last Thursday and learned that 1) the CT scan last Wednesday showed the tumors still growing very slowly (1-3 mm in two months); 2) genetic study shows that I have not one, but two mutations on the genes that express the crucial enzyme that allows people to metabolize irinotecan, the only (I think) drug I haven't had that is FDA approved for stomach cancer. The mutations mean that I don't produce enough enzyme and a full dose of the drug would generate life-threatening diarrhea.

Which leaves us with another possible option. The University of Chicago has a Phase 1 clinic and a lot of trials, overseen by a doctor Holen knows. So the next step is to go to Chicago to be seen by this guy, who will have in his hot little hands a full listing of every treatment I've had for both Hodgkin's and the current cancer, and who can determine whether I'm eligible for any of their studies. CancerConnect, the office here that researches available studies for various cancers, will set up the appointment and call me. I haven't heard anything yet, but I imagine that I will this week. (Because if I don't hear anything in the next day or two, I'll call them.)

Meanwhile, my energy comes and goes. I think it depends on whether the sun is out (right now, it is, which is great), how much rest I've gotten, the phase of the moon, and how successful I am in putting into practice what I know about allaying anxiety. Not as easy as you might think.

Speaking of energy--Saturday night my friend Janet and I went to see the tap dancer Savion Glover. He is unbelievably great. Go see him, if you ever get a chance. In addition to being a fabulous dancer and stage presence, he is one of the most aerobically fit human beings I've ever seen. Some time during the first part of the show I realized I was holding my breath, watching him. But of course, he had to breathe--and it turned out that he could not only breathe while dancing, but also sing.

Friday night we'd seen Sarah Chang, the violinist, play Brahms with the Madison Symphony Orchestra. Another virtuoso performance (Chang, not the MSO). It's truly amazing what humans can do. Individually, and also--as we learned last Tuesday--in community.

Before the Election

2008-11-03T08:00:00.000-06:00

Just a few comments, more in the nature of personal, even psychological reflections on the campaign than on politics, per se. You know who I'm voting for anyway.

Some time in the past year, maybe when Obama won the Wisconsin primary, I said--and maybe even wrote in the blog--that I hoped I'd live long enough to see the election. And I have, which is kind of amazing, whoever wins.

But I realized this past week that I'm not likely to see the way the next administration actually unfolds over four years. I was watching an episode from the first season of "The West Wing" when it hit me that I was using this TV fiction as a kind of stand-in for my hopes for an Obama presidency. I never saw any of the series before this year, and I've been following it, very slowly, on Netflix, over many months. The episode that knocked me for a loop was the one in which the Bartlet people put a Hispanic jurist on the Supreme Court. To my total amazement, I burst into tears when the Senate confirmation vote hit 51. Yes, it's a well-scripted and even emotionally manipulative scene. But still, it's only television. And then I understood that it was exactly the sort of thing that I hoped would happen if Obama were elected--but that even if he became president, I might not be around to see his first Supreme Court appointment.

The whole incident made me feel silly and more than a little gullible, as well as rueful and sad. And then, a couple of days later, the New York Times ran an article talking about how much "The West Wing" seemed to predict the future. (That is, today's present.) They were referring especially to the last two seasons--6 and 7, I think--which aren't even on my Netflix queue yet. But it did make me feel better about conflating President Bartlet with the possibility of a President Obama.

Because of my limited energy and my lack of voice, my campaign volunteering has been restricted to data entry. But I enjoy doing that, and for the past couple of weeks I've been going in to the nearest office, which was (until Friday evening) Madison campaign headquarters, every day or two for an hour or two. The real benefit has been watching (and listening to) the high school volunteers, whose enthusiasm is boundless. It reminded me that in 1960, when I was 16, I was a Kennedy Girl. All I remember of this is wearing a white plastic boater with a red, white, and blue ribbon on it and carrying a sign to a rally when Kennedy campaigned in Pittsburgh. Maybe I did more, though the Kennedy campaign certainly wasn't so organized as the Obama operation. But even if it was just the rally, that bit of participation in politics certainly affected me and helped make me a politically involved adult. One of the biggest reasons I initially supported Obama was that I saw how much he excited young people--and I really believe that augers well for the future of our democracy. At least some of the kids I saw at the Obama office using Facebook to recruit their musician friends to entertain voters standing in line at the polls are going to be doing political work for decades to come.

I had a less satisfactory experience with the campaign on Saturday. I'd set aside much of the weekend, Monday, and Tuesday to volunteer in whatever capacity I could. Saturday morning I went to a training for poll watchers--I'll be doing that from 12-4 tomorrow. Then I stopped at the local office where I'd been doing data entry to see how I might help. The office has been transformed from city campaign headquarters to a neighborhood staging area for the four-day Get Out the Vote effort. I knew that, but talked to the man in charge and explained that I couldn't canvass or phone bank, but was free to do anything else. He informed me that there wasn't anything else happening at that office and added, "I can't just invent something for you to do."

I have to say that I was crushed. I was already feeling bad that, because of my energy level and my evening schedule (orchestra rehearsal) tomorrow, I couldn't sign up for more than one shift of poll watching, and because of my voice I couldn't be one of the people at the polls reporting back by cell phone to some central location on who had voted. And now I was being told that even though I'd set aside three days to volunteer on the campaign, I was useless if I couldn't canvass or make phone calls.

Thinking about it later, I understood several things. First, the campaign needs what it needs; it runs on the physical energies of its volunteers; and it can't be making special cases for every volunteer with disabilities. (I ran into this several weeks ago when I got myself deputized as a registrar of voters, thinking I could sit at a table somewhere, and then discovered that the campaign wanted its registrars to go out and canvass so they could register anyone they came across who wasn't registered.) Second, this is really the first time that I have been forced to recognize what I can't do, with no opportunity to substitute something that I can do. I can't begin to express how diminished--useless, really--it made me feel and how much it made me understand how the "normal" world is set up to disregard, disrespect, ignore--you fill in the verb--people who aren't "normal," who in any way can't fit in. I think it's very ironic that I learned this lesson trying to help out a campaign that is in many ways the most diverse we've ever had. But maybe it's just an indication of how far we have yet to go. I think of people who live their whole lives in wheelchairs--or are profoundly deaf, or blind. We don't make it easy for them to maintain their self-respect.

Well, I've dug myself out of the little depressed hole that this experience created on Saturday. A surprise visit from my friend Beverly, who was walking past my house Saturday afternoon helped a lot. And so has filling the rest of the weekend with productive tasks, even though they have nothing to do with the campaign. Tomorrow, I'll be a poll watcher. And I'll vote!

Be sure you vote, too!

What Next?

2008-10-27T12:23:00.005-05:00

The short answer--I don't know.

The longer answer: Last week I was deemed ineligible for yet another Phase 1 drug trial, this time because the researchers realized I'd had stomach surgery, and they think the drug is likely absorbed through the stomach. (Later I asked my oncologist whether they couldn't have assumed that since I had stomach cancer, I'd had surgery. He said no--apparently when some unfortunate people are diagnosed with the disease, the cancer has already spread so much that it's pointless to remove the primary tumor.)

Over the past three-plus years I've been deemed ineligible for four Phase 1 trials, if I remember the number correctly: one because I'd had too much radiation (for Hodgkin's disease, 28 years ago); one because I'd had too many kinds of chemo, including the treatment that cured my Hodgkin's; one because my tumors were too small for the researchers to follow with their experimental technology; and one because I have a tiny stomach. This does not make me optimistic that I will suddenly find a trial for which I am eligible. And in any case, these Phase 1 trials are generally designed to test for toxicity and find the maximum tolerable dose of drugs that have only been shown to be active against cancer in some lab animals. They are far from proven effective in humans.

On Thursday, Jed (who's in town for three weeks working on the Obama campaign) and I went to see Dr. Holen, my oncologist, and talk about options. One--which we'd all like to avoid as long as possible--is going back on oxalyplatin, which worked against my cancer, but which also caused neuropathy in both my hands and feet. The neuropathy has begun to resolve, but it would come back quickly if I went back on the drug. Neuropathy sounds merely unpleasant--and it is that--but it can also be very dangerous. It destroys balance, and makes falling much more likely, and it's not something that one wants to invite into one's life.

Another possibility is a drug called irinotecan. In order to metabolize this drug, one needs a particular enzyme, which some people have and some don't. The vampires have collected a bit of my blood and sent it off to be analyzed for this enzyme; I gather it takes a couple of weeks for the results to come back.

I asked Dr. Holen about Phase 1 studies at places other than UW. (The problem with UW is that to be fair to all potential study participants, they will only let you sign up for one study at a time. It takes them a week to wash me out of each study. They have something like 18 studies going, and I figure at this rate it would be February or March before they determined I was ineligible for all of them!) He gave me the number for Cancer Connect, which will do a search for studies elsewhere--in specific cities--for which I might be eligible. But the disadvantage of this approach is that any study would require that I get all treatments, blood tests, and related medical care at the study site. This might be feasible in Chicago; it would be onerous but not impossible to drive to Chicago every week, if necessary. And slightly less feasible at Mayo; Rochester MN is considerably farther from Madison than Chicago, but not out of the question.

For other places, though, I'm inclined to say that the questionable benefits of a Phase 1 study are not worth the cost of picking up my life and moving it to, say, LA or DC or SF where I have family and friends (but would still have to rent an apartment), much less San Antonio, where there are apparently the most studies, but where I know no one. And then there's always the question of whether I'd be found eligible for any of the available studies, anywhere.

Meanwhile, although I don't want to sound like Voltaire's Dr. Pangloss ("all's for the best in this best of all possible worlds"), there's a lot for which I'm grateful. Most patients with metastatic stomach cancer live for a much shorter time than I have. I told Dr. Holen that--depending on the day--I feel as though I am (crawling on all fours) (balancing on a tightrope) (dancing) out on the long tail of the survival curve. (Today, it's dancing.) This is a good, even exciting place to be.

When I was at the clinic waiting for my blood to be drawn, I could not help but hear a cell phone conversation that also made me feel very fortunate. A young woman, in her early twenties, I'd guess, and her parents were sitting in the waiting room. The father made a call and was telling the person on the other end that all the news was good: the cancer was only in one breast, there would be more tests, but things were positive. At which point the young woman said "Give me the phone," and told the person on the other end, "We didn't hear one bit of good news. It's all bad." She went on to explain that her cancer was estrogen receptive and she had to decide between having her ovaries removed or, as she put it, "winging it" and hoping that the cancer would not recur. She was clearly angry that she might be unable to have children, and although she was also still able to make ironic jokes, I felt very sorry for her, and very glad that my Hodgkin's treatment (which put me into menopause when I was 37) occurred after I already had two sons.

One last thing: last night, Jed and I went to see "Trumbo," the documentary about screenwriter Dalton Trumbo, who was imprisoned for nearly a year and blacklisted during the McCarthy era (1951-1960, in his case). I thought the movie was really powerful and effective, but I was also struck by something Trumbo said near the end. The blacklisting wreaked havoc on his life and his family's--and those of other blacklisted people, in the movie industry and in other professions. Some of those people, shamed and unable to support their families, committed suicide. It's clear that in ways most of us will never experience, the daily lives of all these people were out of their control. But whatever happened, Trumbo advised his friends, don't forget to have fun.

The oak tree outside my study window has turned a spectacular red, and this morning, as Jed and I drove to the gym, we could see snowflakes on the windshield. Later this week, we'll head into the countryside to see the last of the fall color.

Stamina

2008-10-20T12:09:00.007-05:00

Facing Fear is (almost) here! (Yes, I know that rhymes.)

The books didn't arrive in time for yesterday's event at the Wisconsin Book Festival, but they will be shipped from the printer this Friday. You can pre-order now on Amazon--just search for "Strasser Facing Fear"--or, if you'd like a signed copy, send me a check for $20 and I'll mail one to you. My address is 511 Sheldon Street, Madison 53711. I imagine that local (Madison) bookstores will have copies in a couple of weeks. Those of you who live elsewhere can order copies through your favorite bookseller.

Whew. Seeing this book through to publication has taken stamina, for sure. I started work on it in the late fall of 2004, after Bush's reelection campaign, and wrote the first draft in the spring and summer of 2005, while I was recovering from surgery and undergoing the first rounds of chemotherapy for stomach cancer. Without the friendly urging and deadlines set by my writing buddy Anne-Marie Cusac (who was working on her own book on the history of punishment in America, due out in the spring from Yale University Press), Facing Fear might never have happened.

And then there was the revising, the search for a publisher, the anxiety about whether I would live long enough to see the book into print.... Not to mention the question of how someone without a speaking voice or the ability to travel very far for very long can schedule and perform the readings essential to marketing a book these days. (For my memoir, Black Eye: Escaping a Marriage, Writing a Life, I organized one- or two-week book tours to both the east and west coasts.) Any of you who have marketing ideas for Facing Fear, please send them along! And if you can somehow help by spreading the word via blogs, email, Facebook, or anything else, bless you!

I hadn't planned to write so much about what it took to get a book out into the world, but yesterday evening, thanks to introductions by Anne-Marie, I had the pleasure and honor of meeting Reginald Gibbons, a poet who teaches at Northwestern University. Gibbons' latest collection of poetry, Creatures of a Day, has just been named a finalist for the National Book Award. Like an earlier book, this one was published by Louisiana State University Press--but Gibbons has had to seek out a different publisher for each of his other five poetry collections. (He's also the author of a terrific novel, Sweetbitter, and many scholarly works.) And even after a distinguished career as a poet, Gibbons spent five or six years and fielded rejections from eight or nine publishers before finding a home for Creatures of a Day.

I asked him what he told his students about publishing their work, given this experience of the brutal reality of the American poetry scene. He said that he quoted his own teacher, Stanley Kunitz, who died in 2006 at the age of 100, after a 76-year career as an active and widely-published poet. What it takes to be a published poet, Kunitz said, is "stamina."

Actually, I think that's what it takes to be anything. It takes stamina to be alive. As someone has said, the key to success in life is showing up. (I don't have the stamina to chase down the source of this bit of wisdom.)

So although this post may seem to be about writing, or poetry, or publishing, it really is a metaphor. As I head farther and farther out on the tail of the gastric cancer survivorship distribution, some days I feel as though I'm crawling on all fours, hanging on for dear life; other days (the really good days, like today) I feel as though I'm balancing gracefully on a high wire without a net. But always, it's about showing up. About stamina--mental and, as much as possible, physical.

Thanks, Reg, for the reminder.

Anxiety

2008-10-13T12:47:00.004-05:00

To all you Madison blog-readers: Please join me at the Wisconsin Book Festival on Sunday afternoon October 19, 4 PM, main (downtown) public library. I will be reading from Facing Fear: Meditations on Cancer and Politics, Courage and Hope, and will be joined by my publisher, Richard Quinney, and Carol Bjerke, the artist whose image of a rowboat is on the cover of my book. Both Richard and Carol are cancer survivors, and both of them also have new books coming out this fall. We'll be talking about the relationship between our experiences with illness and our art. Despite the grim aspects of the topic, I think it will be an uplifting discussion!

When I met Carol at the Gallery Walk a week or two ago, we agreed that we couldn't comprehend how people who are not artists or writers cope with illness or other major traumas in their life. We know that it's perfectly possible for them to cope; it's just that making art (for Carol) and writing (for me) are such big and important parts of our own coping mechanisms that it's hard to understand how anyone could be without one or the other.

I had to remind myself of that, though, when it came to writing today's blog. My first impulse was to report that I didn't have much to say, except to encourage people to come to the Book Festival presentation. But when I thought about it honestly, I realized that I had plenty to say, but it wasn't going to be easy to write, or, perhaps, to read. It's not the "I'm keeping my spirits high and focusing on the wonder of the moment" kind of stuff I prefer to write--the way I prefer to think of myself. (And really, the way I usually am, I think.) It's about anxiety, which is my current emotion.

Last night I dreamt that my oncologist was leaving town. I have absolutely no reason to believe this is actually happening, but part of my anxiety, I know, results from the fact that he has been out of town for the past week, and therefore I am quite up in the air about my treatment options. Most of the time I don't think this one-week delay matters much, but I've been off chemo now for four months, and who knows what the cancer is doing. Every time the phone rings, I expect it to be Dr. Holen, who's supposed to call to tell me what's next. So far, it's been a friend who knows someone who wants to buy a copy of Black Eye; the Democratic National Committee which wanted money for Senate contests; and (as I was writing the last sentence), someone from The Nation, who presumably also wanted money, but I didn't wait to hear what she had to say before I hung up.

I'm also anxious about a "swallow study" scheduled for tomorrow, ordered by my primary care doctor because the radiologist who diagnosed my last pneumonia thought it might have been caused by aspiration. "Is that possible?" the primary guy asked, and I said it certainly was. As anyone knows who's eaten with me in the past year, unless I'm pretty mindful of chewing and swallowing, I have a tendency to choke on crumbs or even liquids. (My mother always told me not to talk with my mouth full, but I don't seem to have learned that lesson.) I'm anxious about the procedure itself, which I think involves swallowing barium, which doesn't sound too delicious, and also about what they might say about the cause(s) of the swallowing difficulty, and what they might want me to do about it. Eat only mushy stuff? I don't think so....

And of course there's the stuff everyone's anxious about these days. The election. Well, I tell people that to allay their anxiety, they should go out and work for Obama, and in the past week I've done as much volunteering as I could find time for. In Facing Fear, I write about the importance of working together, in community, as a means of finding courage and hope, and I can tell you that it really does help. I've been totally astounded by the number of people walking into the Obama headquarters every time I've been there, all volunteering their time to make the country a place they're proud of living. It really does make me hopeful. And if Obama loses, I'll know it wasn't because I sat at home, worrying.

The economy. As the stock market plummeted last week, I assiduously avoided looking at my financial statement or calling my financial advisor, under the theory (also propounded in Facing Fear) that sometimes having more information is simply not useful. I long ago decided to find someone I trusted to take care of my money, and to pay him to do it, and I'm not about to make any big changes right now. I can still pay my mortgage and I don't need a new car. So why do I need to know exactly how much money I've lost since October began?

I think it's time to go back to Facing Fear and re-read all the other prescriptions for allaying anxiety. Maybe that'll help with the medical stuff. (I'm reminded of the line from Disney's "Alice in Wonderland": "I give myself very good advice, but I very seldom follow it.") But I have to thank all of you for reading this far, and giving me the chance to say what's on my mind. I'm feeling better already. (That's what writing does for me.) I'm just a bit concerned that now I've spread the anxiety around, and maybe you feel worse.

Sunitinib Trial Update

2008-10-06T14:44:00.002-05:00

I just got a call from one of the phase one trial nurses who told me that the PET scan people have decided I am not eligible for the trial. Apparently the "lesions" (aka tumors, I believe) are too small for them to reliably follow with their imaging technology. Good news for me, maybe, as far as the cancer's progression is concerned, but not so great in the what-next-for-treatment department. And I won't know about that until I get a chance to talk with Dr. Holen, my oncologist, who is out of town for the week.

Sigh. The big annoyance is that I was beginning to think it was safe to plan some trips for the winter, and now that's all up in the air again.

Wonderful Week

2008-10-06T12:53:00.004-05:00

What a fine week, ending yesterday with the birthday season finale, a brunch with biking friends hosted by Diane Lauver--in the picture, from left to right: Gail Van Haren, Maureen Armstrong, Margaret Peterson, Tracy Lewis (standing), Kathy Waack, Diane, Angie Mayr, me, Susan Riley. Although I describe these as my biking friends, they are, of course, much more than that, and I realized during the brunch that one of the wonderful things about their friendship is that they've kept me part of the group, in the loop, even as my annual biking mileage has dipped well below 100. Thanks!

The week included other wonderful events, too. On Friday evening, I participated in the local gallery walk--something I usually shun, because hanging out at noisy receptions trying to make small talk has never been fun for me. And now I can't even hang out at the food table, stuffing my face to avoid mingling. But both my publisher, Richard Quinney, and my book designer, Ken Crocker, had shows of their art work opening on Friday, so I wanted to go to those galleries. Seeing their work (Richard's photographs and Ken's paintings) would have been treat enough, but at each gallery, there was a bonus. Richard's gallery is connected to a coffee house next door and Caroline Hoffman, a friend from starting-the-Children's-Museum days (early 1980s) was showing her photographs of poppies there. I didn't know about the show, but Caroline saw me at Richard's gallery and told me about it. Wonderful work; in fact, I ordered a t-shirt with one of her poppy prints on it.

The bonus at Ken's show was meeting two psychologists (a couple) who were very interested in Facing Fear. Linda Roberts, in fact, does research on the effects of a cancer diagnosis on couples' relationships. We had a long and interesting conversation, not at all "small talk." Fortunately, it was quiet enough for me to be heard!

Ken told me I'd just missed seeing Carol Bjerke, the artist whose image of a boat is on the cover of Facing Fear. I was disappointed, because I hadn't yet met her. But later in the evening, by amazing coincidence, we did meet. I had such a good time gallery hopping that I decided to stop at one more gallery on the way home, to see photographs by Jim Barnard, another Children's Museum friend whom I haven't seen in about 25 years. I was catching up (more or less) with Jim and his wife Barbara, when Carol walked into the room, looked at me, and asked, "Are you Judith Strasser?" (Later she said she recognized me from my blog picture.) We had a good conversation, and I'm really looking forward to our presentation together (with Richard Quinney, too) at the Wisconsin Book Festival on Sunday, October 19. (Main public library downtown, 4 PM--come see us!)

All this took place at Ma Cha, a tea house/gallery, where the proprietor has a truly amazing memory for his customers. I've been there four or five times, always in the afternoon, so when he saw me leaving on Friday about 9 PM, he said, "You're out late tonight!" A young guy who was buying tea looked at me and said, "Of course. It's Friday night. She's partying down!"

And I was. It was really a great evening, one I never expected would, or could, be so wonderful!

This entry has gone on long enough, so I'll just mention a few other of the week's activities: counting and assembling Obama/Biden lawn signs for three or four hours; celebrating my birthday (yet again!) with Janet Zimmerman, Susan Riley, and Diane Lauver at a nice restaurant before going to a play Wednesday evening; sending off the final cover proof for Facing Fear, the last bit the printer needs to make the book happen; receiving all sorts of wonderful gifts, including a gorgeous bouquet of Farmers Market flowers from my friend Sandy; and signing the consent form to participate in the sunitinib trial. I still don't know when that will start--a nurse was supposed to call on Friday with the schedule for the CT/PET scan that has to happen first, but I still haven't heard from her. I gather this requires coordination with the nuclear medicine physicists involved in the trial, so I won't get too impatient until tomorrow.

And the wonderfulness of the past week has already spilled over into this week. If you get a chance, check out this blog about the Great Lakes, which I just learned about today:

http://www.greatlakestownhall.org/opinion/issueview.php?forumid=2&topicid=1166&postid=2399&topicsubject=%22Island%20Eyes%22&dontscroll=

Birthday Season

2008-09-29T12:49:00.005-05:00

Before I begin the main subject of this post (my birthday), I don't want to forget something that I meant to mention last week. The cover for Facing Fear--here it is again, since you might have forgotten the image--includes artwork by Madison artist Carol Chase Bjerke. The image is called "Vital Signs - Boat with Power" and it's from her Life Boat series, which she created while she was being treated for cancer. I was really excited when my book's designer, Ken Crocker, suggested using this on the cover. I think it's perfect for my subject, as well as beautiful. You can see more of Carol's work, including the rest of this series, at www.carolchasebjerke.com.

Tomorrow I will be 64--"the Beatles age," someone said to me recently. Whatever age it is, it's a birthday I wasn't sure I'd ever have, so it's pretty nifty. And the celebrations have already begun. Last Thursday, my writing group (which is very good about celebrating everyone's birthday, which ensures an ample supply of cake throughout the year) met at my house. There was a cake (of course!) which even had "Happy Birthday" written on top, and wonderful presents. An excellent season opener. Since then, I've gotten a happy birthday message from a Facebook friend, and an e-card from a relative. And there are plans for a birthday dinner with friends on Wednesday before our first Madison Repertory play of the year.

As for tomorrow, the actual day--well, once again, I have to share it with Rosh Hashonah, the Jewish New Year. This happens fairly often, though erratically, given the lunar Jewish calendar, And it is, I suppose, appropriate (beginnning a new year and all that), but it does mean going to services on my birthday, about which I have mixed feelings. Nate pointed out that I don't have to go to services, but I want to go--it's just not my idea of how to best celebrate a birthday. However, after services I will go to my friend Jackie's for her annual Rosh Hashonah dinner, always delicious. And since it's my birthday, she suggested that I bring cheesecake for dessert. It's in the oven now, smelling up the house with delicious sweet odors.

The other major event tomorrow is Nate and Meghan's departure for their year in Colombia. I won't see them off since they're leaving from Newark, but Nate already has plans to come back for Thanksgiving at my sister Susie's, and I will see him then. And then later, maybe, in Cartagena--at least that's my hope for when it gets really cold in Madison.

On Thursday, I see the oncologist, and since I am pretty much done with the pneumonia, I think I will probably get the go ahead to start the clinical trial I mentioned in the last post. More about that next week. Meanwhile, happy new year, to those of you celebrating it, and happy 64th birthday to me!

Down and Up

2008-09-22T13:14:00.008-05:00

It's come to my attention that some of you think I'm amazingly upbeat all the time--you can't imagine how I manage. The truth is, I don't. And last week was a fine example. Thanks (or no thanks) to the pneumonia, I was not only tired and short of breath, but I also felt extremely sorry for myself. After the weekend, which had been about as gloomy, weather-wise, as Madison gets (no sun at all for two days), Monday and the rest of the week were gorgeous. But I could barely walk as far as the coffee shop on the corner--and my summer-long goal of riding my bike the twenty miles of the Capital City trail one of these September weekends was totally out of the question.

The two antibiotics I am taking were working, I could tell, but much more slowly than the levaquin I had last time, to which I am now allergic. Several wonderful friends called or e-mailed at the beginning-middle of the week to see if I could come out and play, and I couldn't. Poor, poor me. Not even the knowledge that Facing Fear had finally gone to the printer was enough to cheer me up.

Then a nurse called to talk to me about taking part in a clinical trial of sunitinib, a drug (a pill, actually) that acts to inhibit angiogenesis--the proliferation of new blood vessels that are essential for tumor cells' growth. I had heard and read about sunitinib, which is already approved by the FDA for kidney cancer (for which there is no other treatment) and one other solid tumor, a stomach tumor of a kind I don't have. The trial I expect to be joining looks at whether sunitinib is effective against other kinds of solid tumors. It actually compares two dose protocols--one group takes the pill for two weeks, has one week off, and then repeats that cycle; the other group takes it for four weeks and has two weeks off. But both groups do take the sunitinib--there's no placebo control involved.

Of course, I can't start this until the pneumonia is resolved. Suddenly I realized I'd be quite happy to go to the hospital to get a stronger IV antibiotic, if that was necessary to get into the sunitinib trial. But I doubt it will be necessary; I'm feeling remarkably much better, and I still have another few days on the oral antibiotics.

Even this news (which came on Wednesday, I think) wasn't quite enough to pump my spirits back up to their usual level, though. That required feeling better physically, which happened gradually, and finally really took hold over the weekend sometime. My breathing seems almost back to normal (what passes for normal for me), and I have much more energy, though I can't say I'm actually doing very much with it other than hanging out with friends, drinking green tea or coffee. Which is, of course, great fun.

On Saturday I did get myself deputized to register voters, but the local Obama campaign is really focused on canvassing and phone banks, not registration drives, and since those activities are pretty difficult for me with my lack of much voice, I'm not sure what I'll be doing. Something, I hope. Though I confess to having gone to the gym this morning instead of to the rally with Michele Obama.

Come to think of it, there are a lot of things I'm not sure about! For instance, I still don't know whether Facing Fear will be available in time for my appearance at the Wisconsin Book Festival on October 19, but if you're interested in knowing what that's all about, check out the Book Festival web site :

http://www.wisconsinbookfestival.org/schedule/events.php?eventdate=2008-10-19

Living in the Moment

2008-09-15T20:30:00.005-05:00

I already knew it was a good idea to live in the moment, but today was an excellent lesson in the necessity of doing it. But before I explain why--let me offer the best moment of the past week: seeing the cover design for Facing Fear. (I was going to include the image in this post, but what I have is an Adobe Acrobat pdf, which apparently doesn't work on blogspot. Ah well--this is part of living in the moment! Instead, here's a photo of me, taken at Olbrich Park in Madison this past summer by my friend Bonnie Weisel after we biked to see the butterflies. No, there are no butterflies in this photo.)

So now-- about today. My plan for the day was to go to the gym for my strength-training class in the morning, then come home and work at my desk until I went down to the county clerk's office to be deputized as a voter registrar. But then late yesterday afternoon I spiked a fever that seemed all too reminiscent of the pneumonia I had in late July. So I scrapped the gym plan, called the clinic, and ended up going there at 3:30. Where I learned that I do indeed have pneumonia again. I managed to avoid hospitalization because there are still two oral antibiotics to which I am not allergic, but between the clinic visit and the trip to the pharmacy, I also managed to miss the 5 PM deputization.

Well, no matter. The reason I was going to get deputized today at the county clerk's office was that I had planned to go to a dragon boat festival and race in Oshkosh on Saturday, which was when someone comes to the Obama headquarters to deputize registrars. But with the pneumonia--which does make breathing a bit problematic--I'm not going to be racing on Saturday. So I just stopped at the Obama hq en route to the pharmacy and signed up to be deputized on Saturday.

Other plans for the week are similarly affected. I have to see the doctor for a follow-up appointment on Wednesday at 1 PM, so I can't introduce the domestic violence survivors who will be reading their work at a fundraising luncheon that noon. I probably won't go to dragon boat practice Wednesday evening. On the other hand, I might finish the two excellent books I'm reading, Beijing Coma by Ma Jian (a novel) and Anti-Cancer, recommended by Fred B in his comment on last week's blog post. And maybe I'll also watch some more episodes of the first season of The West Wing. As I learned this summer, pneumonia's an excellent excuse for lying around, doing only what one wants to!

In fact, my next task of the evening is to place an order with the Willy St. Coop so that they will deliver some groceries tomorrow. A real luxury!

By the way--when the picture above was taken, I was only a few weeks past my last bout of pneumonia. I know my immune system is strong: Dr. Holen complimented me on my white cell count two weeks ago. And best of all, one of the two antibiotics is my favorite color, rose, and matches both the turtleneck and the fleece I am wearing today. So I figure it's just a matter of time before I'm in the pink of health, as they say.

Therapies That Work

2008-09-08T14:05:00.006-05:00

Last Thursday I had my first CT scan and first oncology appointment since the beginning of the summer, when I started my vacation from chemotherapy. Much to Dr. Holen's surprise and mine, the scan showed remarkably slow growth of tumors in the months since I stopped chemo. (Haven't had oxalyplatin since May, or anything at all since mid-June.) So rather than start the oxalyplatin again, which clearly worked but causes neuropathy, not to mention cold sensitivity, Dr. Holen suggested two possibilities--one, waiting until things change for the worse and then (presumably) going back on oxalyplatin, and two, investigating what clinical trials I may be able to enter. He described three or four new drugs that look very hopeful; of course, whether the trials are open, and whether I'd be eligible for them, are big questions. He seemed to think eligibility was not an impossibility--I'm skeptical, having already been washed out of a couple of trials because of too much prior radiation and/or chemo. Anyway, he's going to check on what's available and get back to me sometime soon. And in fact today I returned from the gym to find phone messages about getting a blood test that made me think maybe the process of figuring out my eligibility for a trial is alread in motion.

Dr. Holen seemed genuinely excited by the results of the scan and the possibility of finding some sort of scientific breakthrough for stomach cancer, and he admitted, "It's odd to say to someone "'your cancer is worse'" (because the tumors are bigger), and yet have the overall picture be good news.

Of course, maybe he was unduly influenced by the little (but very high-end) cupcake I gave him to celebrate two years of survival with metastasis, but I don't think so.

Anyway, all this meant no chemo on Thursday--a big surprise--so they just de-accessed my port and I went to an expensive shop and bought a leather wallet to celebrate, and to replace the wallet lifted Sleazebag Nimblefingers when I was in Chicago.

One of the things Dr. Holen said to me was, "Whatever it is you're doing--exercise, whatever--keep it up!" Which helped me decide to describe, in this blog post, some of the things that I am doing, as well as some of the things that I'm not.

I've often said, in recent months, that I think that the reason I'm still alive has a lot to do with the supplements I take, recommended by Dr. Lu Marchand, the integrative medicine doctor who comes into the oncology clinic to work with cancer patients. Obviously, the chemotherapy I was on all last fall, winter, and spring, has been vitally important. But when I first saw Dr. Marchand last fall, I was losing 5 pounds a month (I went from about 130 to just barely over 100 pounds between June and December 2007) due to diarrhea that I couldn't control. I was extremely weak: I had almost no muscle mass and needed to use those door-opening buttons designed for handicapped access to get into public buildings with heavy entrance doors. Obviously, this situation couldn't go on much longer, and also obviously, chemotherapy wasn't likely to help--in fact, the chemo was partly responsible for the diarrhea.

Dr. Marchand made a lot of recommendations, all based on (the admittedly limited amount of) scientific evidence on "alternative"--or rather, complementary--therapies. She suggested that I make myself smoothies using whey powder (for protein), yogurt, and flax seed oil, with a banana to improve the taste. I don't much like bananas, and I don't find this at all delectable, but I do force myself to eat a certain amount of this glop every day, and the extra protein, plus the strength training I've been doing, has definitely built some muscles.

I also take a lot of supplement pills: milk thistle, melatonin, vitamin D-3, Host Defense (a combination of powdered medicinal mushrooms) and a squirt of another combination of mushroom extracts, as well as a multi-vitamin and calcium (both of which I've taken for years). Most of these, I think, are intended to boost my immune system and help the chemo work against the cancer. To control the diarrhea, I take immodium and, with every meal and snack, pancrecarb, a formulation of pancreatic enzymes that help digestion. I'm still playing with dosages of these, and also with the timing of meals. It's hard enough, because of my surgically-reduced stomach, to get enough calories to sustain life; I hate it when--as often happens when I eat in the evening--the food departs my system before there's time for the nutrients to be absorbed!

Before she recommends any supplement, Dr. Marchand checks it against the chemo I'm taking to be sure there won't be adverse reactions. Very important--and a good reason why no one should just look at the list of supplements above and decide, "Oh, those would be good for me."

All this--thinking about food and digestive problems and having to eat glop and count out pills and make sure I've taken them (and I haven't even listed the various prescription drugs I take daily)--is very tedious. I hate it. But obviously, it has worked. I haven't been able to gain any weight, but I haven't lost any more, and I've definitely built muscle. (Just ask my massage therapist!) And something--my hyped-up immune system working with the chemo, maybe?--has slowed the spread of the cancer.

So there's definitely something to complementary therapies (including acupunture, regular exercise, maybe even massage and Feldenkrais). But--there's also a lot of potential for quackery. Every so often, a very well-meaning acquaintance or even a stranger will tell me about something I definitely should take to fight my cancer. I've had people who read my blog implore me to investigate supplements sold on web sites set up by friends of theirs. A stranger once sat down next to me in an airport waiting room and described an alternative medical clinic in Florida that I should investigate. And recently, a new friend--a tourist visiting Chicago from another country--spent a lot of time trying to convince me to take "Vitamin B-17," found in apricot pit kernels; she based her advocacy of this therapy on the testimony of one man who claimed to have cured himself of leukemia by eating apricot kernels, avoiding caffeine and alcohol, and I don't remember what else. My friend was thrilled to disover that in the U.S., apricot kernels are freely available for purchase in health food stores. In her country, she said, they're banned. Not too surprising. Here are a couple of quotes from the Wikipedia article on amygdalin, aka Vitamin B-17 or laetrile:

"Though it is sometimes sold as "Vitamin B17", it meets none of the criteria of a vitamin. Amygdalin/laetrile was claimed to be a vitamin by Ernst Krebs, Jr in the hope that if classified as a nutritional supplement it would escape the federal legislation regarding the marketing of drugs."

"A 2006 Cochrane review of the evidence concluded that there is no sound evidence that laetrile is an effective cancer treatment^[8] and that there is considerable doubt about its safety.^[8] It has not been approved for this use by the United States' Food and Drug Administration.^[5] The U.S. government's National Institutes of Health evaluated the evidence, including case reports and a clinical trial, and concluded that they showed little effect.^[9] A 1982 trial of 178 patients found that tumor size had increased in all patients. Minimal side effects were seen except in two patients who consumed bitter almonds and suffered from cyanide poisoning."

Cancer is no fun, chemotherapy is often even less fun, and I understand why many cancer patients and their family and friends look for alternatives. I consider myself extremely fortunate to have found a board-certified doctor who is a knowledgeable advocate for tested therapies that supplement and complement chemotherapy--indeed, to have easily available access to her in my oncology clinic. Many oncologists are still very wary of "alternative" therapies, which they seem unable to distinguish from evidence-based complementary therapies, and I have friends and family members with cancer whose university-associated clinics offer nothing by way of integrative medicine.

This is more than a pity. It's as much of a scandal as apricot kernels and other quack remedies.

Cancer Lessons

2008-09-01T08:00:00.000-05:00

The past few days have confirmed, or re-taught, some of the lessons I've been learning for the past 3 1/2 years: have fun, know your limits, accept help, don't sweat the small stuff (and a lot of the "stuff" is smaller than you think).

Starting with the last of those lessons: On Wednesday last week, I drove down to Chicago to meet up with my college friend Claire, who was stopping over en route to an amazing family reunion on the east coast. After a good dinner at an Armenian restaurant, we walked to Navy Pier for a terrific fireworks show. When we got into the cab to head back to the hotel, I realized that my purse was strangely light. (I'd just started carrying a purse instead of the travel wallet I've held in my hands for years, if not decades.) I unzipped the purse--and discovered that the travel wallet was gone, along with a couple of hundred dollars (including the wonderful billfold designed and folded by my son Jed from twenty one-dollar bills), four credit cards, my drivers license, university ID, library cards, AARP and AAA cards... You get the idea.

We asked the cab driver to take us back to the restaurant (the last place I'd had the wallet out), but when Claire went in to inquire, she got nothing but blank stares from four waiters. She was, I think, more upset than I was. In fact, I was strangely un-upset. Believe me, worse things have happened. And I was kind of amazed (and embarrassed) that Sleazebag Nimblefingers had managed to unzip the purse, lift the wallet, and re-zip the purse without my noticing.

Fortunately, Jed and Nazgol were still in Madison, and Jed was able to find, in the mess in my study, most of the info I needed to report the theft to the credit card companies. I called Chase first, and was astounded and touched that one of the first questions the customer service person asked me was, "Are you safe?" Bank of America asked me (as part of their security check) what my work phone number was--and even though I retired nine years ago, the phone number came right to mind! And the cs person at the third company was able to cancel both that company's card and the one I hadn't yet called. All this took place less than two hours after the pickpocketing, but Sleazebag Nimblefingers had already charged drinks (I assume) at several bars and something (beer?) at gas stations and a Jewel market. I'm sure a good time was had by all that evening! And yes, I was out a chunk of change, but he or she no doubt needed it more than I do. Claire owed me her share of hotel room; she gave me cash, which was more than enough to buy gas and lunch enroute back to Madison.

Don't sweat the small stuff.

As for the help and limits-- Saturday I was joined by four wonderful biking friends (Diane, Angie and Jim, and Gail) on the TeamSurvivor Chocolate Chase fund-raising ride. Angie and Gail decided to do the 20 mile option. Jim and Diane asked what my goal was and when I said 10 miles, they started off with me. Jim lost us after a pit stop in a cornfield, and after only 3 1/2 miles, I told Diane that I had changed my mind and wanted to stop after the 4 mile route. The ride was a bit hilly, and I could tell that I just didn't have the stamina to ride another 6 miles and be able to do anything more than nap for the rest of the day. And I did have other plans for the afternoon and evening! So I sucked up my pride and called it quits. I think the limits on energy/endurance are related to lingering effects of the pneumonia, and I have no interest in courting a recurrence of that. So I'm actually proud that I knew and respected my limits. And that I had no qualms at all about accepting Angie and Jim's help in wrestling the bike back into the Subaru.

And--best of all, and a little reward (I think) for my good sense: at the raffle after the ride, I won a $20 gift certificate to David Bacco Chocolates, an expensive and exquisite place I have heretofore only patronized for gifts for others!

As for having fun: what could be more fun than the past week, which (in addition to the above) included two days with Jed and Nazgol including a visit to the House on the Rock tourist-attraction-supreme; an overnight stay in Wilmette, Illinois, with my high school friend Barbara; two concerts at the Token Creek chamber music festival; a walk at dusk with my friend Sandy in search of great horned owls...

This week it's back to what passes for normal life around here, with a CT scan and visit to the oncologist on Thursday, and who knows--probably, I'd guess--resumption of chemo. But there are still a few days before all that. And I'll post a health status report next Monday.

What I Did on My Summer Vacation

2008-08-26T09:56:00.003-05:00

I have to say--this does feel a bit like a school assignment, even though I assigned it to myself and I really do like writing the blog. But after ten days or so of non-stop playing, it's a little shock to get back to the computer.

I really have been away from cyberspace for most of that time. Nate (younger son) and his partner, Meghan, arrived in Madison on Thursday, August 14. They'd moved out of their Somerville MA apartment a week or two before, and had been visiting various branches of Meghan's family on the east coast before heading west in their rental car. Eventually, after seeing lots of friends and more family and going to weddings east and west, they will head to Bogota, Colombia, where they both have fellowships for the next year to study and work on various aspects of environmental and human rights law. But the day after they got to Madison, we headed north to Duluth, where we met Jed (older son) and his partner, Nazgol, who had just flown into Minneapolis from France, where they were celebrating Nazgol's successful completion of her field exams for a PhD in sociology.

On Saturday 8/15 the five of us continued north, on Highway 61 (yes, the same one Bob Dylan named his second album after) along the shore of Lake Superior to Grand Marais. After a bit more provisioning (we'd already loaded up at coops in Madison and Duluth, as well as the Duluth farmers' market) we turned inland on the Gunflint Trail and drove another 43 miles into the Boundary Waters, where we'd rented a cabin for the week on Gunflint Lake. And what a week it was! Perfect weather, minimal mosquitoes and black flies, endless raspberries and blueberries ripe for picking, two canoes provided with the cabin, a rental motorboat and a fine restaurant at nearby Gunflint Lodge. Lots of swimming for the other four, though I didn't venture in because the water was pretty cold, reading, fishing, canoeing, game playing, conversation, relaxing. And really beautiful scenery, even though the opposite shore (Canada) suffered a devastating forest fire last summer.

One day we all canoed across Gunflint and Magnetic Lakes; then Jed and Nate took the canoes though a rapids and we went a short distance down river, picnicking on shore just above a small waterfall. I thought I'd paddle back, because we'd had a headwind on the way across, and I could benefit from the tailwind on the return. But of course--just like biking!--the wind shifted and intensified as we started home. So I paddled across Magnetic, and then, in the interest of getting back to the cabin before we all starved, turned the paddle over to Jed before we hit Gunflint. But I was pleased with my effort.

And the exercise stood me in good stead a few days later, at the dragon boat race in Superior. We all drove down on Friday, getting to the motel just after the TeamSurvivor bus arrived from Madison. Jed, Nazgol, Nate, and Meghan did me the honor of waking up early on Saturday, in time to watch me race at about 8:15 AM. Although TeamSurvivor raced in two heats, we had more paddlers than seats in the boat, so some of us--by the luck of the draw--had to sit out one race. I was not unhappy to be on the short end: between the stiff and cold headwind, my lingering pneumonia, the difference between practice (easy) and racing (intense--the longest three minutes you can imagine), and the opportunity to spend more time with my kids, it seemed to me good fortune to have only one race! And with luck, I'll have another chance at the Oshkosh dragon boat regatta in September.

Nate and Meghan headed west toward Glacier National Park mid-afternoon Saturday. Jed, Nazgol, and I spent a delightful hour or so at the Amazing Grace Cafe in Duluth's Canal Park with some of my biking friends from Eau Claire and Madison. Angie, Janet, Renee, Rene, and Eleanor (along with six other women) had just finished a loop ride from Duluth into the Mesabi Iron Range west of the Boundary Waters (Dylan's home town of Hibbing was on the loop). We all caught up on our latest adventures, and then Jed, Nazgol, and I drove to Minneapolis, returned the rental car, re-rented it, and drove back to Madison, arriving home about 2 AM on Sunday!

I was absolutely fried on Sunday, even though I slept in to 10:30, probably the latest I've slept in years, and all we did was grocery shop and go to an Obama fundraiser for a short time! But by yesterday (when I should have been writing the blog), I'd recovered enough to do a bunch of errands and then head out to House on the Rock to show Nazgol one of the area's prime tourist attractions. I remembered the place as totally exhausting, but in fact, it was a lot of fun. I think they've reorganized the exhibits so they're not as overwhelming as they used to be. Or I'm older. Or something! Anyway that--and eating out and watching a movie--was what I was doing yesterday instead of blogging.

Vacation continues this week with a short jaunt to Chicago--and next week, it's back to reality, with a CT scan and an appointment with the oncologist and, who knows, maybe even chemo. But I'll post again before that happens!

Having too much fun...

2008-08-25T20:54:00.002-05:00

...to post last week or today. But tomorrow, I promise! And I'll fill you in on all I've been doing while away from cyberspace. Thanks to all who've expressed concern, but my silence does not mean I've taken to my bed!

Picture Me.....

2008-08-11T13:55:00.005-05:00

Today you get stories in pictures. The first (actually illustrated by the photo below) is a story I told a couple of weeks ago, about the wonderful bike ride I took on Mackinac Island the day before my biking friends headed out on their Upper Peninsula loop. Angie Mayr took this picture. It shows Janet Zimmerman (on the left) and me, and a tiny part of Lake Michigan.

Since that day (which really was a high point in the annals of my biking history), I've done two more short rides. As I think I reported, on the last day of the UP ride, I did the first 11 miles, into a headwind, not knowing that I had pneumonia. And this past week, on Friday, my friend Bonnie Wiesel and I rode from my house to the Olbrich Botanic Garden on Madison's east side (6 or 7 miles one-way) to see the butterfly exhibit. We saw quite a few butterflies emerging from their chrysalises--an amazing sight, because it happens literally in the blink of an eye. But really, I thought the people watching outdid the butterflies. I haven't seen so many babies and toddlers in decades! Plus little herds of day care kids and day campers, each herd wearing t-shirts of a particular identifying color. After we'd had our fill of butterflies and children, we walked a bit in the outside gardens, ate our Power Bars, and rode home. It was a beautiful day, and a lovely ride, for which I have Bonnie to thank, since it was her idea.

The other picture is more recent--from last Tuesday's reading in Chicago. Six of the contributors to the anthology Fresh Water: Women Writing on the Great Lakes read at the Peggy Notebaert Nature Museum, part of a summer-long Read Green, Live Green project sponsored by the Chicago Public Library. The participants: in the front row, Alison Swan, who edited the book and lives in Saugatuck, Michigan; Gail Louise Siegel, from Evanston, Illinois; and me. In the back row: Judith Arcana, who came all the way from Portland, Oregon (she used to be a Chicagoan); Susan Firer, currently Poet Laureate of Milwaukee; and Donna Seaman, of Chicago, who initiated the reading. Not shown in the photo: the great blue heron, the V of geese, and the rat who joined us as we read in the courtyard behind the museum. (To be honest, I didn't see the rat, but others did.)

The reading was an amazing event, well attended by an enthusiastic audience, including many people who were taking part in a workshop on the Great Lakes. The library provided an elegant reception spread of delicious hors d'oeuvres, and in addition to paying us honoraria, put us up in the Talbott Hotel downtown. I'm not accustomed to staying in hotels that provide terry cloth bathrobes and turn down the covers (leaving little chocolates on the pillows) before bedtime. But I could get used to it!

I had been concerned that, because of the pneumonia, I wouldn't be able to go to Chicago. But I was--and am--feeling much better, and the driving was a breeze, especially because my friend Janet lent me her I-Pass and I just whizzed through the innumerable toll plazas on I-90.

Now, on to the next adventure: getting together with my sons and my daughters-out-law at a cabin in the Boundary Waters (northern Minnesota). More on that next week!

Exciting Addendum

2008-08-04T14:03:00.004-05:00

I know, I've already posted today's blog, but I just had to share this with you. I am getting ready to go to Chicago tomorrow to participate in a reading, and I decided to see if I could wear earrings. Because of the neuropathy, it's been many months since I could put earrings into my pierced ear-holes--I simply couldn't feel the holes, and I also couldn't put the tiny earring backs on the posts. The last time I tried, I gave up in total frustration after fifteen minutes of vain (I admit it) attempts. Attempts in vain.

But I just did it! Both ears! No problem! Wahoo! Obviously, the neuropathy is resolving, though it's by no means gone.

Modernity: Blessings and Curses

2008-08-04T08:05:00.002-05:00

Well, first the blessings. The "minor virus" I reported on last Monday turned out to be pneumonia. I know, that doesn't sound like a blessing. And when the x-ray revealed that the afternoon fevers (102+ when I finally got to a thermometer on return from Michigan last Sunday) were caused by pneumonia in "three places" (lobes?), the doctor wanted to lock me up in the hospital. That struck me as a Bad Idea and I refused. So she put me on a strong antibiotic (levaquin) and a short tether, telling me that if my breathing got any worse, I should go to the ER immediately and get myself admitted.

But in fact my breathing was no worse than it has been all summer (ever since the June blooming of the Japanese lilac trees, to which I am allergic), and it is distinctly better than it was a year or even six months ago, though it is by no means what I or anyone else would consider "normal." This particular doc, who was subbing for my primary care guy, had never met me before, so she was shocked by my impaired breathing, and I think didn't believe me when I said it was no worse than usual. And apparently the first couple of days of pneumonia are the most dangerous. But I started running a fever on Friday, and I didn't see her until Monday--I was already past the first couple of days. And in fact on Saturday morning I'd felt good enough to bike 11 miles into a head wind.

Anyway, I started popping pills Monday afternoon, and they worked just fine. By Tuesday, I didn't need to take Tylenol in the afternoon; by Thursday, I didn't have a fever at all. I saw the doctor again Thursday morning, and she was much reassured--even embarrassed because she couldn't hear anything problematic when she listened to my lungs. She said that it takes 6-8 weeks for pneumonia to completely resolve in someone who has no underlying lung disease, which of couse I do have. So we'll see what happens. They can check on the pneumonia when I have my next CT scan, soon afer Labor Day.

I was supposed to take the levaquin for ten days, but yesterday morning I woke up with hives on my legs which I suspected was an allergic reaction. Went off to Urgent Care, where my suspicion was confirmed by another doctor who said to stop the antibiotic. He also said that the drug does most of its work in the first two days. I'd taken the drug for six days and he wasn't inclined to prescribe a substitute unless I relapse. I'm now allergic to four different classes of antibiotics, so that was fine with me. He did write a prescription for something I can take with me up to the Boundary Waters in a couple of weeks, in case I get sick up there where there are more loons than medical personnel.

So there you have a blessing of modernity: you contract a dread (and formerly fatal) disease, pop some pills, and are miraculously cured. Would that it worked that way for all dread diseases. Stomach cancer's a little more recalcitrant.

And then there's the saga of my new laptop, sterling example of modernity's curse. Well the laptop, which I picked up on Monday (between getting the x-ray and learning the diagnosis), is lovely. But I can't get Thunderbird, my email program, to work, and even if I could, all the addresses are stored somewhere on the old computer, not this one. What's more, I can't get the laptop to communicate with my old, reliable laser printer. Maybe this is a cable problem; maybe not. But I had to order the new cable on line, and the only way to determine if it's defective, I think, is to order another one on line and wait for it to arrive. Of course as some snippy young man at the UW IT help desk suggested, I could just buy a new printer. "They only cost $20 or $30," he said, rather impatiently. But why would I junk a perfectly serviceable, indeed wonderful, old friend? I'm afraid this was a case of generational disconnect. I guess that like my printer, I'm operating on a parallel connector, and this unhelpful and wasteful "support person" is, like my laptop, only conversant with spiffy new USB connectors.

And of course, while I was trying to get the printer to work, the word processing program, which had been running just fine, crashed, permanently, I think.

But hey, all this is just the usual curse of technology, and we know that a little time and money solves that sort of problem. So I'm not as aggravated as I might be. I'm feeling fine, and that's what really matters.

The Can Do/Can't Do Ratio

2008-07-28T07:37:00.001-05:00

Hello from Manistique, Michigan! Today (I'm writing this on Saturday July 26) was the last day of the MUP Shoreline bike ride, and the riders had a terrific tail wind most of the day, which was gloriously sunny. The ride ended where it started, in St. Ignace. We spent some time at the annual whitefish festival, which happened to be today, and then started to drive south, taking a brief detour to drive across the Mackinac Bridge, which connects Upper and Lower Michigan, and then back again.

I'm taking advantage of the Internet access and computer at the Comfort Inn where we're staying because I will be computerless when I get home Monday. I should be able to pick up my new computer Monday, but who knows how long it will take for me to set up the Internet connection. Better to write the blog today and set it to publish on Monday, I think.

Which I suppose is another instance of the can do/can't do ratio I've been thinking about today. This has not been the most wonderful vacation I ever took (in any event it would have a hard time competing with Mozambique and South Africa, the Galapagos, Hawaii, Japan, Egypt....). But I think the problem was the almost constant reminder of what I can no longer do, compared with what I can. I generally try to focus on what I can do, not what I can't, but that proved to be pretty hard, when everyone else was riding and talking about rides past, present, and future. Although my friends were very willing to ride slowly with me, the weather conditions, the nature of the beginning and ending of each day's route, and a mild virus that laid me low on Wednesday evening, combined to ensure that, other than the spectacular circumnavigation of Mackinac Island last Sunday, I only rode yesterday morning.

That was just 11 miles, into a headwind, and I was actually very lucky to do it between rain showers. Later in the day, the bikers were drenched by rain so heavy that the car windshield wipers couldn't keep up with it. I was thrilled not to be on a bike right then (and also on an earlier day, when my friends arrived at our B&B bedraggled and soaked, having just biked through an hour or two of storms).

Well, live and learn. It was good to be with my friends, and to revisit some sights (like Tahquamenon Falls) that I haven't seen in more than 20 years. But I don't think I'd do this kind of trip again. Makes me too sad because of the can do/can't do ratio.

On the other hand, I did finish proofing the galleys for Facing Fear, sitting in a variety of coffee shops, parks, and restaurants. So at least I accomplished something!

Finally, a reminder to all of you who send me personal comments through the blog and clearly want me to respond. I will not publish personal comments for everyone to read; I will not respond to personal comments on the blog; and I will only respond to you directly if you send me email. My email address is jlstrass@wisc.edu.

See you in August, from my new laptop!

2008-07-26T19:37:00.000-05:00

Bittersweet

2008-07-21T07:34:00.006-05:00

Greetings from St. Ignace (pronounced, by the locals, IG-niss) on the beautiful Upper Peninsula of Michigan! It's 8:30 AM, and I've just seen off my five bike-riding friends on the first day (56 miles) of their ride and have returned to the Econo-Lodge where we spent the night, and which has an Internet-connected computer in its lobby for use by guests. I never imagined it would be so easy to blog today!

Of course, I'd rather be riding my bike, though the weather right now (cloudy, chilly, misting a bit) is not so tempting. But I admit to being a little teary as I drove away from the ride start. That's the "bitter" part of "bittersweet."

Still, as alway, I try to focus on what I can do, not what I can't. So here's the "sweet" part: Yesterday, five of us took our bikes on the ferry from St. Ignace to Mackinac (pron. Mackinaw) Island, and rode the eight-mile circumferance road that hugs the shoreline. It was a gorgeous day, the scenery was magnificent, the route was flat, and my friends tell me I was grinning from ear to ear. I was thrilled to be on my bike, having a fine and easy time of it, somewhere other than the Soiuthwest Bike Trail in Madison, which is a half-block from my house. The only slightly difficult part of the ride was near the end when we turned into a fairly stiff headwind, and I no longer had the breath to chat with Janet.

Highlights of the ride: Lake Huron and a great view of the Mackinac Bridge, a very long suspension bridge that connects Upper and Lower Michigan; lots of flowers, both wild and cultivated; the breccia outcroppings high above the shore, including a lovely natural arch that we climbed quite a lot of steps to see. (And I didn't find the climb difficult....) Also, the sense that the world could be a much calmer place if cars were banned everywhere, as they are (and have been since the late 1800s) on Mackinac Island. The only modes of transportation are bikes and horse-drawn vehicles. There are a lot of really gorgeous, big, old, and I'm sure expensive houses on the island, and it was amazing to think of how the materials arrived at the building sites, which are by no means all close to the shore. But there were, after all, thousands of years of human experience with large-scale construction projects before the invention of the internal combustion engine. It did remind me, though, of the abandoned Model T Ford on Sand Island in the Apostles, which Gertrude Wellish, a Minneapolis school teacher had used in the early 20th century to haul materials to build the summer "cottage" where I stayed for three weeks in 1998 when I was Artist-in-Residence at the National Lakeshore.

One more bittersweet moment from the past week: On Friday, I had my last cello lesson with my fabulous teacher, Carina Voly. Carina has accepted a great job with the New World Symphony (that's the sweet part), which means she will be moving from Madison to Miami next month. I'm really happy for her, and for the New World Symphony and its young musicians, whom Carina will help make the transition from conservatory students to professional teachers and orchestra members. But for me, I'm kind of devastated. Carina helped me make the transition from 55-year-old non-string-player to 63-year-old intermediate-level cellist who enjoys participating in easy (and non-auditioned) orchestral performance. Along the way, she's put up with my extreme performance anxiety and my unreasonable expectations of myself as a musician, and--most recently--has helped me figure out how to work around the chemo-induced neuropathy in my fingers. She's irreplacable as a teacher, and I'm not quite sure what comes next. I managed to control myself when we hugged goodbye, but as soon as her condo door closed behind me, I burst into tears....

Ah, well. Time to move on with the day. As usual, not sure what it will bring: maybe sitting on the shore of Lake Huron, proofreading Facing Fear. Or proofreading in a coffee shop somewhere, if the weather doesn't improve. And if it does improve, perhaps riding my bike back from De Tour Village (tonight's stopover) to meet my friends as they end their ride.

Health Care Reform (and more personal matters)

2008-07-14T13:32:00.006-05:00

(Note: I may not be able to post blog entries of much substance between now and about August 1. To learn why, see end of this entry.)

I know, I know-- you're probably more interested in my health and activities than in the arcane political jockeying among progressives on issues of health care reform. So I'm not going to go into detail on the politics, but just give you a heads-up on what apparently is going on. It's the old debate about different means to an agreed-on end, applied to a "new" old issue. To be specific: do we insist on pushing for a single-payer plan, or do we assume that's not going to happen in the near future, so we support incremental change that somehow mixes existing private insurance plans with some sort of subsidized insurance for people who can't afford or aren't eligible for private coverage?

Here's how the debate seems to be shaping up:

Rep. John Conyers has sponsored single payer legislation in Congress. HR 676, the U.S. National Health Insurance Act (also sometimes referred to as "Medicare for all") was endorsed in late June by the U.S. Conference of Mayors, and has received more media attention than one might expect for a "radical" proposal.

And you may have heard about the HCAN campaign that's ramping up. HCAN is an acronym for Health Care for America Now, a $40 million organizing and media campaign sponsored by a fairly broad coalition including unions, Move On, Planned Parenthood, and others. Maybe AARP? I haven't checked on that. According to a Move On fundraising plea, the campaign will fund 100 organizers "on the ground" (which doesn't seem like very many, considering the size of the country), plus TV and radio ads, etc. HCAN advocates an incremental, "any reform is better than what we have" approach.

You can find out more about both these approaches by Googling HR 676 and HCAN. I'd be interested in knowing which strategy you favor.

And now a few things about me: I've been home for a week now, and am getting ready for my next trip, a week plus a couple of days on Michigan's Upper Peninsula. I'm going with five friends who are signed up for a bike tour sponsored by the League of Michigan Bicyclists; they'll do a 6-day loop, including one rest day, starting at St. Ignace (near the famous Mackinac Bridge) and heading first north and a little east, and then west and south. I'm signed up as a "non-rider," since there's no way I can ride 60 miles a day, and will spend time entertaining myself while the others are riding, but eating breakfasts and dinners with them and also hanging out with them in the evenings and on the rest day and the day before the ride starts, when I think we'll go to Mackinac Island.

I'm planning to do some sight-seeing (the tour organizers promise a special sight-filled route for non-riders) and also, I think, will be proof-reading Facing Fear, which is supposed to go to the printer in early August. And I'm taking my bike; I hope that I will be able to ride a little of the route in reverse from the end each day, and meet my friends as they're coming into town.

As I said above, my blog posting may be a little spotty, or even non-existent, between now and late July or early August. Next Monday (7/21) I will be traveling between St. Ignace and De Tour Village, Michigan. If there's a library with internet connection for non-natives in the Village, and if I have time, I'll post something Monday, but it might be more likely to find both time and internet on Tuesday or Wednesday, when we'll be in Sault Ste. Marie.

I'm not taking my computer with me; in fact, my current laptop will spend my time in Michigan with the people who are selling me a new laptop, so they can move stuff from this hard drive to the new one. I'll probably pick up the new computer on Monday 7/28, and it should be ready to go--except for my wireless connection, which I'll have to re-install. So maybe I'll be able to post on 7/28, and maybe not. You know how it is with new technology.... No promises! Except that my sons, who lobbied heavily for replacing this admittedly cranky four-year-old beast, and who even made the initial phone calls to the vendor, assure me that I will be thrilled with the new laptop. Even though it will be a PC, not a Mac.

Now a word about my health: it's terrific to be off chemo! I can tell the neuropathy is getting better because my balance is much improved. And so's my digestion. Not to mention my mood. And I think so far the tumors are behaving themselves.

One more thing-- for those of you in Chicago, or inclined to visit Chicago for a day, I will be reading at the Peggy Notebaert Nature Museum in Lincoln Park on Tuesday, August 5, at 6:30 PM. The reading is part of the Chicago Public Library's Read Green, Live Green program; I and other contributors will be reading from the anthology Fresh Water: Women Writing on the Great Lakes.

Rationing Health Care

2008-07-08T16:45:00.006-05:00

I'm back from a lovely weekend, visiting my sister Susie and her husband Bob in Takoma Park, Maryland, and taking in the fireworks display in our nation's capital--a little muted by low-lying clouds (aka light rain), but maybe that's some sort of metaphor for our times.

Susie and I spent much of my visit viewing reels and reels of 8 mm movies, taken by our father, Alex, between about 1950 and 1966. So many birthday parties (there are four of us Strasser girls) and miniature train rides and pony rides at the Pittsburgh Children's Zoo and children (including some totally unrelated Dutch kids in Amsterdam) on swings! And a lot of really, really bad photography. This is not art; more a kind of obligatory "this is what fathers do" documentation of mid-twentieth-century family life.

But thinking about Alex, combined with reading a long article about the high--perhaps socially indefensible--cost of a new cancer drug in Sunday's New York Times, led me to muse, once again, about the cost of health care. More specifically, on the question of how much extension of whose life is worth how much money.

When my dad was in the hospital in Madison in the fall of 2002, being treated (unsuccessfully) for a staph infection that he contracted after hip surgery, he was quite adamant that I should read a particular book that presented the argument for rationing health care, spending more on pregnant woman, infants, and toddlers and less--much less--on the elderly. The book pointed out that, in our present system, by far the lion's share of expenditures goes toward keeping old people alive for the last six to twelve months of their lives.

My father, who was 84 at the time, was quite explicit about his belief that the focus on keeping old people alive was an abomination. He, himself, had a living will and a healthcare power of attorney, and made it clear to his wife and his daughters that he did not want any extraordinary measures taken to prolong his life. When he was trying to refuse a diagnostic CT scan on the grounds that it was too expensive a procedure for a man his age, I remember saying, "That may be good social policy, but we're not talking policy reform here. We're talking about you." He finally gave in.

(Despite his resistance to extreme--or even not so extreme--medical treatments, and his careful advance directives, he was subjected to resuscitation efforts that left him severely disabled after his heart stopped and his brain was deprived of oxygen for more than fifteen minutes. We had to argue with the hospital to withdraw life support--an argument that, ironically, we won only after I described to the chair of the ethics board how intensely my father insisted that I read the book about rationing health care. But that's another story.)

The Times article reminded me of that argument about the CT scan, and about the different perspectives that even a single person (like me) might have about rationing health care. The article raised the question of whether it makes sense to spend as much as $50,000 or $100,000 for a cancer treatment that may only extend a patient's survival by four months. In the scheme of things, four months is a tiny amount of time, a tiny fraction of a normal life span. Like Alex, I really do think it makes much more sense to invest that kind of money in prenatal and early childhood care--and even on young adults who can expect many more years of productive life--than on terminal cancer patients. But as a cancer patient who has now outlived her prognosis by four months thanks to very, very expensive treatments paid for by insurance and by the American taxpayers who fund Medicare, I can tell you that every good month--heck, every good day--is precious. (So thanks, you taxpayers out there.) And even if I didn't have cancer, I and many of my friends have already passed the arbitrary magic number--60, or 62, or 65--that in many rationing proposals would make us ineligible for open heart surgery or other very expensive treatments. That's a much more sobering reminder of mortality than becoming eligible for Social Security or Medicare.

In the long run, I suspect that rationing health care may be necessary. (In fact, one can and probably should argue that rationing exists now, determined by the market: poor and uninsured people don't get treated; wealthy and insured people do.) But "official" rationing, and the difficult decisions and heartache it will necessitate, can at least be delayed if we take a hard look at cutting health care costs. I recommend the Times article (available here), which explains some of the reasons for the outrageous cost of cancer drugs, as one place to start educating yourself on this issue. And then you might investigate the cost-saving advantages of a single-payer insurance system. They're considerable.

Better Late Than....

2008-07-01T15:11:00.003-05:00

Well, so far two people have remarked on the fact that I didn't post my regular Monday blog entry yesterday. It's great, really, to know that you're out there reading! And, some of you, even commenting--though I do wish more of you would do that.

I could say that I was just preparing you for the fact that next week, the blog post will appear on Tuesday, not Monday. (On Monday I'll be returning to Madison after a glorious Fourth of visiting my sister and watching fireworks in DC.) But the truth is, I was just too busy yesterday to get to the blog. In addition to spending most of the morning working out at the gym and then having brunch with Jed and our friend Jim, I was doing a bunch of desk work, picking up copies of th Facing Fear manuscript and delivering them to people who've agreed to write blurbs for the cover, meeting with the book designer to talk about interior and cover designs, and then spending several hours looking at fearful images on various web sites for potential use on the cover. I discovered, in that search, an amazing collection of Arthur Rackham illustrations for Wagner's Ring cycle. None at all appropriate for the cover, but if you're a Rackham afficianado, or just curious, go to the Wikimedia site and search for Rackham.

In the past week, I've run across a couple of articles that provoked me to file them away to share with you. One is an interesting piece in the June 23 issue of The New Yorker addressing the question of whether a computer can ever actually have an intelligent conversation with a person. Two things in the article ("Hello, Hal" by John Seabrook) struck me as especially pertinent to my situation. First, I discovered that there's actually a scientific explanation-- complete with a name, the Lombard effect--for why I find it tiring to talk against loud background noise. We humans unconsciously raise our voices to compensate for ambient sound. Of course, I'm often aware that I won't be heard against, say, the passing bus or truck, or (at a recent party) a salsa band, and I just shut up. (At the party, I whispered a response into a friend's ear when he asked, in the middle of a lively piece, how I was. "I can't talk," I said. Which he already knew.) But often, I'm not even aware that I'm trying to compete. I just know that talking is tiring.

The other salient point in that article really irritated me. After some comments about how dissatisfied many customers are with the speech recognition programs that many companies use ontheir customer service lines in place of touch-tone menus, Seabrook refers to Leopard, Apple's new operating system which responds to voice commands. This, he point out, "is wonderful for people with handicaps and disabilities...." Which I'm sure it is. But I wish he'd been as sensitive to the needs of people who have trouble speaking when he was writing about those speech recognition programs. Last fall, when I needed to call some company (I think it was Northwest Airlines) that offered only this option, the friendly computer could not understand a word I said, and I was so frustrated I came close to crying. Eventually, the computer got frustrated, too, and turned me over to a real person, who also had trouble understanding me. Even though my voice has gotten a lot stronger, I still quail at the thought of conducting business on the phone. Recently, I had to call both a credit card company about a questionable charge, and the UWHealth business office about an invoice question, in the same day-- and when I was able to successfully complete both calls, I felt like I'd accomplished an amazing feat. Two amazing feats, in fact.

On a more positive note, here's some interesting information from a post that appeared recently in the Topeka (KS) Capital-Journal blog (http://blogs.cjonline.com/index.php?entry=7452). The blogger, Bill Roy, a retired physician and former member of Congress, was reporting on a talk by the senior vp and chief medical officer of a Kansas medical center to an audience of retired physicians. The vp, Dr. Kent Palmberg, said he thought eventually the U.S. would "end up with something like Medicare for all." And then he added, "I'm not sure that's all bad. They pay promptly, predictably and adequately, with a minimum of paperwork. That beats costly fighting with scores of insurance companies, plus caring for the many uninsured."

Dr. Roy notes that this attitude is growing among physicians. He writes that "a 2007 study published in the Annals of Internal Medicine...found that 59 percent of physicians in the U.S. support 'government legislation to establish national health insurance,' up 10 percent in five years." Last December, the American College of Physicians endorsed single-payer as "one pathway" to universal coverage. And Dr. Marcia Angell, former editor of the New England Journal of Medicine, says, "There's only one choice for universal health care at a cost we can afford, and that's single payer, Medicare for all."

Please tell this to your Senators and Representatives, and to both Presidential candidates, too! And to every Harry and Louise you meet.

See you next Tuesday. And have a brilliant Fourth....

Vacation Begins!

2008-06-23T09:00:00.002-05:00

I'm writing this at 9 AM on Saturday, June 21--though it won't be posted until Monday, when I'll be in Boston (Somerville, actually), visiting Nate and Meghan. Nate doesn't know it yet (as I'm writing), but I'm planning to leave Madison very early tomorrow morning, arriving at his house in time for his birthday party tomorrow afternoon. As I explained in last Monday's post, in my mind this is almost as much a celebration of my 27 years as a cancer survivor as of Nate's thirtieth birthday.

Speaking of cancer survivors: here's a photo of some of the members of TEAMSurvivor Madison and the TSM dragon boat, which has been moved to Rutabaga's back lot--but has not yet been in the water. The man in the picture holding the dragon head is the boat's builder, Jim Caldwell, who donated hundreds and hundreds of hours to the project, beginning in March. You can get an idea of how big the boat is when you realize that you can't even see all of it in the picture.

So vacation has begun! In about a half hour, I will disconnect from my chemo pump, and with luck, I won't have any more chemo until after Labor Day. And tomorrow will be the first of six trips, big and little, I have planned for the next two months: two to the east coast, two to Chicago, one to the Upper Peninsula of Michigan, and one to the Boundary Waters in northern Minnesota. That one ends with a day at the Dragon Boat Festival in Superior, Wisconsin.

Sounds like a lot of fun. Now, if the tumors will just behave.....

27 years and counting....

2008-06-16T16:27:00.003-05:00

Lots of fun this past week: a wonderful bike ride with new TEAMSurvivor friends; paddling practice on the Yahara River; a great party, co-hosted with good friends, to celebrate various people's retirements, pending retirements, and/or resistance to retirement. The last guests left after midnight--and I was sorry to see them go! Who says "seniors" (I guess that's who we are, now) can't party hearty?

And best of all, a meeting with the marketing department at UW Press, where we were encouraged to bring out Facing Fear this fall, instead of next spring. The official publication date will be December 15, but we hope to have books in hand by the time of the Wisconsin Book Festival in mid-October. Of course, this depends on the production process moving smoothly and swiftly, but we have reason to believe that it will. I'll keep you posted!

But what's really been on my mind the past week is my younger son's impending Big Birthday. He'll turn 30 next Sunday. This means I will no longer be able to trust either of my sons. (Those of us who came of age in the '60s understand that we can't trust anyone over 30--ourselves excluded.) But seriously--and much more important--it means that despite having had two cancers, I've seen both my sons into their thirties. They were only 3 and 6 years old when I was diagnosed with Hodgkin's disease in 1981. I didn't spend a lot of time worrying that I wouldn't live to see them grow up--but I'd be lying if I said the thought didn't cross my mind. So here I am, 27 years later, and here they are, all grown up (and then some). Amazing. I feel very lucky. And as I've said before, it's a lot easier for me to cope with the stomach cancer, which was likely caused by the radiation treatments for the Hodgkin's, knowing that the radiation also made it possible for me to raise my sons.

So Nate may be worried about getting old (though he told me the last party he and Meghan hosted didn't break up until 6 AM, so he couldn't be feeling too old!) But I'm thrilled that he's turning 30, and that I'm around to see it happen.

Dragons

2008-06-09T13:25:00.004-05:00

I was trying to decide how to title this post, which--as you'll see--is about a variety of things: a chemo vacation, anxiety, anger, (lack of) control. And about dragon boats, too. So I decided to call it "dragons," and as I typed that into the title box, I realized how apt a title it is for a chronic disease, which drags on, and on, and (hopefully) on.... And which is, or can be, a drag on energy, spirit, etc.

So "dragons" it is.

Last Thursday I saw Dr. Holen, my oncologist, for what we both hope will be the last time until September. I have one more chemo treatment (on June 19), and then I'm on vacation from treatment for the rest of the summer--unless something comes up before then. Dr. Holen warned, "You must be very vigilant about your health." And of course it was last summer, when I was on vacation from chemo, that the tumor attacked my vagus nerve and my voice began to disappear.

I was pretty anxious, going in to the appointment. What if the doctor discovered something going on when he listened to my lungs? What if he ordered a CT scan (which he'd mentioned last time I saw him), and it showed the tumors growing? It seemed entirely possible that all my plans for a summer of fun (including several trips with friends and family) would have to be scrapped.

But they weren't. In fact, Dr. Holen suggested that the next CT scan be in September, rather than this month, precisely because if something nasty showed up, they'd have to treat it, and if it showed up now, that would screw up my summer. Sometimes it's better not to know.... even (or especially) if you're a doctor!

A day or two after this appointment, I had a dream that revealed to me how angry I am at the cancer and my inability to take control of it and banish it from my life. In the dream, I was furious, screaming at the symbolic stand-in for the cancer, "You are so selfish; you don't take my needs into consideration, it's all about you, you, you." Oddly, until this dream, I never realized I was angry about being sick. Sad, yes, but not angry.

But the dream also pointed out that I can (and do) still control some aspects of my life, however small--in the dream, I went to a diner for breakfast when I was hungry because I'd had to rush out of the house without eating--and that means quite a lot. It's really important to do what one can, when one has the ability. Ultimately, none of us is going to be able to walk away from all the dragons!

In fact, this past week I took a big step toward a dragon--a dragon boat, that is. I went to my first training session for the Dragon Boat regatta that will take place on Lake Superior on August 23. (A dragon boat is an elaborately decorated huge canoe-type boat, that holds a crew of about 20 paddlers. The first, and maybe only, one I ever saw was poking around the Capetown, South Africa, harbor, but I think the sport is growing rapidly in popularity, world-wide. The Superior regatta attracts a hundred boats.) I will be part of TeamSurvivor's crew--TeamSurvivor is a group of Madison-area women cancer survivors who do a variety of physical activities through the year. The dragon boat program, which is generously supported by Rutabaga, a local paddle sports shop, involves weekly paddling sessions on the Yahara River. Right now, until our very own dragon boat is completed in mid-July, we train in Moby, a white war canoe on loan from Carl's Paddling (another local shop) that holds about 10-12 paddlers. I was afraid that I wouldn't have the stamina, upper body strength, or aerobic capacity necessary to paddle, and I was delighted to discover that none of that was a problem. And it certainly would have been, six months ago. So all the strength training I've been doing at the gym is really paying off! And I can't wait for the next training session, this Wednesday. It's really wonderful to be out on the water in the early evening.

As for the tumor dragons--I'll just have to trust I can fend them off for another two or three months. Right now, I definitely feel strong enough!

Poetry Camp

2008-06-02T12:23:00.003-05:00

I'm back from Poetry Camp, the class Robin Chapman and I teach at The Clearing, a wonderful adult education center in Door County, Wisconsin. (Door County is the "thumb" of Wisconsin, a peninsula extending into Lake Michigan.) The Clearing, which was started in the late 1920s by Jens Jensen, a Dane who emigrated to Chicago and became a well-known and influential landscape architect, is modeled on the Danish Folk School idea. He conceived it, originally, as a place to train young landscape architects, much the way Frank Lloyd Wright conceived of Taliesin as a hands-on school for architects. The summer classes at The Clearing these days range from the arts and crafts (writing, water-color painting, glass fusing, photography, weaving, woodworking, etc.) to nature studies (bird watching, plant identification). And more. Check out their catalog on line!

The Clearing's grounds are beautiful--over 100 acres on the Green Bay (western) shore of the peninsula, close to the very tip. The view is much the same as that from my former mother-in-law's cottage, which is just a bit to the south on the shore path. But the grounds, of course, are much more extensive, and include open meadows as well as woods, which this past week were crowded with trillium. The season is about three weeks behind Madison's--it was fun to watch the early spring unfold again as we drove north--and it has been a very cold spring up north, as well as here, so the yellow lady slippers, lovely orchids which usually have appeared en masse by the time we're in Door County (we teach the same week each year), were just beginning to come out as we left. Most of the week was quite chilly, though on Thursday, the temperature climbed above 60 and the sun was warm, so I headed off to the east side of the peninsula and lay on the sand beach, reading, and wearing only a turtleneck and jeans (no fleece) for about an hour and a half. Heaven!

Poetry Camp itself was wonderful: small (there had been several cancellations due to illness), but full of enthusiastic poets whose writing clearly improved over the week. Robin and I do all the exercises along with the students, so I ended up with a few poems that might even have a life beyond camp. One of the advantages of being at a retreat with artists from other genres is a kind of cross-fertilization that goes on, and a Sudoku-inspired quilt, pieced by an independent study resident (the wife of one of the Photoshop class instructors), found its way into one of my poems, much to my surprise.

I'm somewhat reluctant to post the poem (or any unpublished poem) on my blog, since one interpretation of the "rules" of poetry says that posting on the internet constitutes publication and precludes any appearance in a print journal. (And in response to Matthew, who asked in a comment why not self-publish, I have to say that for me there's a constant tension between the desire to have my work "out there" for others to read, and the desire for acknowledgment and acceptance of that work by editors and other gate-keepers of the poetry community, and I generally have resolved that tension in favor of professional validation.)

But I don't want to be a tease, either-- so here's the poem:

Sudoku

Such a bore--digits, no words,
pure exercise of logic and, since
I never cared enough to advance
beyond the easy ones

just a routine of trial-by-error
penciling-in of tiny numbers
in empty squares, erasures,
crossings-out.

But Carol's Sudoku quilt!
Three rows of three squares each,
no color repeated in any column
or row. Nothing to solve

except the problem of creativity:
how one perceives
without either numbers or words.

Poetry

2008-05-26T08:07:00.003-05:00

As I write this, I am eating breakfast and hoping it will take only another hour to write this post and get the car packed, the garbage tossed, the dishwasher emptied and reloaded...etc, so I can head out to pick up Robin and point the car north to Ellison Bay and The Clearing for Poetry Camp. (We'll drop Jed, who's been here for two weeks at the UW Memorial Union to catch the bus to O'Hare.)

But when the message is posted, tomorrow, I will be trying to write poems, along with our Poetry Camp participants. Robin and I do the exercises--in fact the last poems I wrote, none of them worth even revising, were last year's exercises. I haven't written poetry in a year; haven't even wanted to.

The last good poems I wrote, collected in a manuscript, "Limited Warranty," have spent the past year or more trying to get published, to no avail. One or two have made it into journals, but the rest just collect rejections--one in the past week from a press that specifically wanted poems about illness. It's been, to say the least, discouraging.

I have an idea of why no one wants to publish these poems, most of which I wrote in a rush in the months after I learned that my cancer spread. People's reactions to any writing--fiction, nonfiction, poetry--is based largely on their ability or desire to identify with the subject, or with a character. For example, a woman who has chosen to stay with her husband rather than pursue a true(r) love may be blown away by the currently popular novel, Loving Frank. Mamie, Frank Lloyd Wright's second wife and the protagonist of the novel, represents the life not chosen--wild, romantic, risky.... A reader who hasn't had an affair, or hasn't considered leaving her husband and children in pursuit of true love, may find the novel a good read, but nothing special.

And most people really resist identifying with someone who's destined to die, and soon. No one wants to confront their own mortality, in poetry or anyplace else. So some editors tell me they find my poems "very moving" and "fine writing" -- but they're not interested in publishing what they, or their readers, may perceive as a downer. (And one manuscript screener, very young by the look of her handwriting and the tenor of her comment, wrote "Thank you for giving poetic voice to your experience," which I have a hard time accepting as anything other than thinly-veiled disdain .)

So, since my subject is often death, and what everyone from Oprah to journal editors and poetry contest judges prefer is recovery, I feel as though writing and sending out poems is a colossal waste of time. Better to write the blog, which is there for the people who know me, and are therefore interested, or who find their way to the writing through the magic of the internet.

Where would I be without cyberspace?

And now, I'd better get to the dishwasher!

Busy Days....

2008-05-19T20:33:00.002-05:00

....so busy, in fact, that the week has gone by without my thinking very much about the blog, or what to write today! I've been really focused on the book manuscript, Facing Fear, trying to tie up the final revisions before I leave next Sunday for a week in Door County. Every day, I go through a chapter, trying to make the format uniform and--most tedious--converting the cryptic footnotes into some sort of coherent listing of sources that will appear at the end of the book. I've assigned myself a chapter a day, and today I finished the next-to-last piece. All that's left is the epilogue, the page of guidelines for confronting fear and anxiety (self-help condensed, is the way I think of that page), and the acknowledgments. And then printing out about 250 pages. Maybe I can do all that tomorrow afternoon; maybe it'll slop over to Wednesday. At any rate, I think I will be ready to take the manuscript to Kinko's on Thursday. And then I can turn my attention to getting ready for the poetry class (we call it Poetry Camp) that Robin Chapman and I teach at The Clearing in Door County.

What else have I been doing? Jed arrived Monday evening (a week ago), and Nazgol, his significant other, flew in from LA on Thursday night and left this afternoon. So I've been playing with them in the afternoons and evenings. Fortunately, I guess, the chemo I got on Thursday didn't include oxalyplatin, so I bounced back quickly, and was pretty much fine by Friday. We went walking in the UW Arboretum to see the glorious crab apples and lilacs, and on Satrurdy drove all over southwest Wisconsin, it seemed, on back roads--taking the Merrimac Ferry (free, cable-pulled across the Wisconsin River, one of my favorite parts of the state) to go to the International Crane Foundation and a nearby, sort of, natural area, before heading to a fine potluck celebration of a friend's 60th birthday. Yesterday, I went to a graduation party for Pasha Sternberg, who immigrated with his family from the USSR as a 5-year-old seventeen years ago. Amazing to see kids grow into fine young people, especially since I don't feel any older than I did in 1991.

And I've been busy planning trips for the summer-- to DC for fireworks on the 4th of July, and up to the Boundary Waters in August with both my sons and their girlfriends, a trip that I will combine with participation (I hope!) in a Dragon Boat regatta in Superior, Wisconsin. I've signed on with TeamSurvivor, a group of women cancer survivors who do all sorts of exercise, for their paddling sessions on Wednesday evenings. Can't wait to get out on the water, although it won't happen this week, when I have a meeting of another group, or next, when I'll be at Poetry Camp.

Speaking of next week-- I'm going to try an experiment, made possible recently by Blogger, the Google program that hosts thousands of blogs, including this one. I won't have my computer with me up north, but I will be able to write a blog post before I leave Madison, to be automatically posted next Monday. So you'll have something to read even though I'm far from cyberspace, solidly planted in the real world, amid the trillium and maybe even yellow lady slippers.

Visit to Trinity UCC Church

2008-05-12T15:06:00.003-05:00

Yesterday's trip to Trinity United Church of Christ in Chicago was quite wonderful. Fourteen of us went, many from Congregation Sha'arei Shamayim (CSS), the Reconstructionist Jewish congregation of which I am a member. (The bus driver and his wife also joined us. They didn't even realize that it was Obama's/Wright's church until they were inside--and they really liked the service.)

I couldn't have organized the trip without the help and support of many people, including CSS administrative assistant Jim Manos, who made many phone calls for me to bus companies and to a restaurant we stopped at for lunch, Rabbi Laurie Zimmerman, and several friends and acquaintances, including Bacia Edelman and Judy Klehr, who helped promote the trip to people they knew. Several people who could not make the trip for various reasons (illness, Mother's Day commitments, and so forth) sent checks to help pay for the charter and make seats available to people who could not afford the fare.

The trip generated some wonderful publicity, including a conversation on last Tuesday's "Eight o' Clock Buzz" on WORT, our community radio station, between Norm Stockwell and host Stan Woodard, and a really good article in the May 7 Capital Times by Judith Davidoff, which you can access at http://www.madison.com/tct/archives/. I know it also generated a lot of discussion (dare I say argument?) between friends, spouses, and acquaintances. I couldn't have imagined better consequences!

We were warmly greeted by the church, and our presence was noted from the pulpit. The service itself was incredible, and quite different from the Youth Sunday service that Jed and I attended in late March. This was a full-out regular service, with the adult choir, which must have nearly a hundred members, singing almost throughout the service, accompanied by organ, electric guitar, and drum set. Rev. Otis Moss, James Wright's successor as pastor, led the service and gave the sermon. He's an amazing orator, and the organist accompanied him with little riffs as he built, again and again, to a peak of excitement and exhortation.

At one level, the service could be seen as purely religious, though clearly that strain of Christianity that emphasizes Jesus's compassion for the poor and unfortunate and insists that we emulate it. At another level, there were clear (to me, anyway) though implicit references to current political events. For example, a responsive reading reiterated the statement, "Divine love does not ask family to choose between family members." The minister was explicit about the inclusive nature of this statement: "Beloved, we love W.E.B. DuBois and Booker T. Washington. We love Marcus Garvey and Ida B. Wells. We love A. Philip Randolph and Bayard Rustin. We love Ella Baker and Angela Davis. We love Martin Luther King, Jr. and Stokely Carmichael." And a little later in the litany: "Beloved, we love Ishmael aned Isaac. We love Jacob and Esau. We love Moses and Aaron." He never said "We love Rev. Wright and Barack Obama," but the importance of not choosing between even these "family members" driven apart by politics and media was clear.

The sermon, also, was effective on multiple levels. On the surface, it was exegesis of the week's scripture reading, Luke, chapter 7, verses 36-49. In these verses, a Pharisee, Simon, invites Jesus to have dinner with him. A prostitute enters the house without being asked, and washes Jesus's feet with her tears, dries them with her hair, kisses them repeatedly, and anoints them with balm or perfume. Simon is appalled. If Jesus knew she was a prostitute, he says to himself, he wouldn't allow this. (Rev. Moss said, in an aside, "Now how would Simon know who this woman was, unless he'd been hanging around the red light district himself?") Jesus tells Simon a story to emphasize how much more important forgiveness is, for someone who has many sins, and he forgives the prostitute's sins, wiping the slate clean, so to speak, so she can begin a new life.

At the beginning of the sermon, partly I think because it was Mother's Day, Rev. Moss emphasized the righteousness of women, and the difficulty they had in being ordained by the men who governed the churches (including UCC), even though they had clearly been "ordained by God." It was a very feminist and also, in parts, very funny introduction, praising women (like the prostitute) who did not know their place, and refused to accept other people's definition of who they were. It introduced one of the themes that ran through the whole sermon: do not let other people define you. Rev. Moss focused, later, on how important this was in the black community, especially for black youth, so often defined in negative stereotypes by the media, the school system, the police and the courts. As he pointed out, "If I can dismiss your pain [by defining you as a "bad person"], I don't have to act [to change society or correct injustices]."

The second main theme of the sermon, picking up on Jesus's forgiveness, wiping the slate clean, was that we, too, should forgive past sins and look to the present and the future. Again, Rev. Moss focused the congregation's attention on black youth, suggesting that what should matter is what a young person is doing now, and what he or she will do in the future, not his or her past grades, or drug use, or misbehavior. He pointed out that even Richard Nixon was spared certain punishment by Rosemary Woods' judicious use of the "delete" button, and noted that "God does not want a resume of yesterday; doesn't care about the stereotype people have of you.... Jesus doesn't see every negative thing.... If God doesn't look back, why should we?" So use that delete button!

Not everyone in our group agreed, but several of us saw the sermon as (among other things) an extended metaphor about Rev. Wright, and the way he has been defined and stereotyped by others--and particularly by those who don't want to act to correct the problems in the black community, and in the US, that Wright has spent his career addressing. (And I'm not referring to the spread of AIDS by the government. Or his alleged anti-Semitism.)

It was really a masterful sermon, I thought, because it was so rich in meaning, and in levels of meaning. And I have to say, it was some of the best theater I've ever seen! Truly, the whole day was wonderful.

And now i'm off to the Arboretum, where I think the fruit trees are in full bloom.

Balancing Acts, Faith, and Denial

2008-05-05T12:05:00.005-05:00

When I saw my oncologist last Thursday, he decided to take me off oxalyplatin, one of three chemo agents I've been getting, because my neuropathy--numbness in both feet and hands--has been getting significantly worse. In truth, it had occurred to me to cry "uncle" to him, not just because of the neuropathy, but because it's been taking me longer and longer to bounce back from each chemo treatment. But all I had to say was that I'd been dropping things (like half a can of Coke in a hospital elevator--what a mess!) and having a little trouble with zippers, and that was enough for him to decide to keep me on the leucovorin and 5FU, but take me off the oxalyplatin, which is what causes the neuropathy. The problem is that the neuropathy can become permanent, if it goes on too long. Not a pleasant prospect.

Of course, this is a two-edged sword, because the oxalyplatin has clearly been working on the tumors. "Well," Dr. Holen said, "we don't know that for sure. Maybe it's the leucovorin and 5 FU that's been working." Right. But if I have an oxalyplatin holiday, they can always start it up again if, or when, the tumors resume growing. I'll have a CT scan sometime in June, before I start the promised two-month vacation from all chemo.

Meanwhile, without the oxalyplatin, I bounced right back from chemo this week--no nausea, not much fatigue. It was a definite, and pleasant, change from the past two or three chemo infusions. So now I just have to have faith that the tumors have been beaten back enough that they'll lie low for a while. Or maybe what I have to do is just ignore, for now, the possibility that without the oxalyplatin, they'll grow back. We call this denial. Which is not to say it's a bad thing to do.

The experience mirrored, in a way, the balancing act involved in organizing Sunday's trip to Trinity UCC. People who had expressed interest in the trip started questioning the decision to go as soon as Rev. Wright's media exposure began. But the responses ranged from "don't go"--expressed quite well by Fred B in his comment on last week's blog post--to "I would be even more interested in the trip if Rev. Wright were going to be preaching." And I had already chartered the bus. So what to do? How to balance the "go" and "don't go" arguments?

Since I never intended the trip to be an endorsement of Rev. Wright or Barack Obama, much less Louis Farrakhan, but had been clear from the beginning that I wanted to bring people to Trinity to express support for the congregation itself, I decided to go ahead with the trip. I had to have faith that people would understand the rationale for the visit, whether or not they agreed with it--and to practice a little denial, too, about the likelihood that people wouldn't understand. I explained my motivation aned intent to everyone who asked--including a reporter who's doing a story about the trip in this week's Capital Times (now, sadly, a weekly rather than daily paper). No one canceled his or her reservation, and at the moment, it looks like at least 16 of the 29 seats on the bus will be full. Maybe more. I'll report on the experience next Monday.

Meanwhile, I came across a quotation in an article about the psychological challenges of living with chronic cancer that gives another perspective on balancing acts. The article (which was in an online journal called cureextra) quotes Steven Passik, a psychologist at Memorial Sloan-Kettering Cancer Center in New York. Passik points out that living with chronic cancer requires perspective-taking.and compartmentalizing. "Suddenly, you want to live every moment of every day. But this is just not possible. You can't live in the moment all of the time. You need to cultivate being involved in life with enough denial to put the cancer at arm's length."

Precisely. And it's good practice for all the balancing acts of life.

Planning

2008-04-28T14:24:00.006-05:00

Hola! glad to be back after last week, which was highly productive but pretty tough, mentally. More about that later. But first, an invitation:

I'm organizing a "field trip" from Madison to south Chicago on May 11 to attend services at Trinity UCC, where Rev. James Wright is now senior pastor. (See the March 31 post for a description of my trip to Trinity with my son.) Madison Jews and others upset by the anti-democratic "guilt by association" rhetoric that links Barack Obama through Rev. Wright to Louis Farrakhan, and who want to support the beleaguered congregation at Trinity, will be warmly welcomed at the 11 AM service.

We will head down to Chicago on Sunday morning and will return immediately after the service (which is about two hours long), stopping on the way back for lunch. We will travel by chartered bus; the cost, if the bus is full, will be $30 round-trip.

If you'd like to join us, or would like more information, please email me at jlstrass@wisc.edu. (Email will work much better than a comment to the blog, which won't give me your name or email address!) To reserve your space on the bus, send a check for $30, made out to Judith Strasser, at 511 Sheldon Street, Madison 53711. We can take 29 people. At this point, enough people have expressed interest to fill about half the bus-- but only a few have sealed their commitment with a $30 check! Still I expect the bus to fill, on a first-come, first-served basis. So if you want to join us (and I hope you will), send in your reservation money ASAP!

Now, about the past week. I was, as I mentioned last time, at Edenfred, an artists' retreat in Madison. Although I went home at night, I worked very intensely from about 9:30 to 5 every day, Monday through Friday, revising my manuscript, Facing Fear. The retreat was a wonderful gift; I was able to make it almost the entire way through the manuscript, and I now feel confident that I will have the revisions finished before May 25, when I go up to Door County (northern Wisconsin) to teach poetry for a week at The Clearing.

But the week was exhausting, and emotionally difficult. For one thing, it was a very monastic existence, and I'm no monk. For another, the subject matter of the book is occasionally difficult. For a third, when I took short breaks to read a novel, the book I chose (because it was related to the subject of the last chapter of the monograph) was Lovely Green Eyes, by Arnost Lustig. Lustig is a terrific writer. He's a Holocaust survivor, and his many books of fiction, including Lovely Green Eyes, are accounts of life at Theresienstadt, the concentration camp where he was imprisoned. Not exactly escapist literature.

Also last week, I learned that a friend and fellow poet had been suddenly taken ill and was scheduled for very serious surgery in May. She sent me an email telling me about this, and explaining that she and her husband would likely not be able to go to Chicago with us, which they had been planning. But now, of course, it's difficult, or impossible, for her to make plans. When I wrote back, explaining that I understood completely about the way illness interferes with planning for the future--it's one of the really big losses I've experienced--I suddenly realized that this was precisely what I'd been struggling with all last week, without being really aware of it. I have no idea whether I'll be around to see Facing Fear when it is finally published. Which, in a way, calls into question all the work I was doing--because if I'm not around to market the book, it's unlikely to get into many readers' hands. (Hardly any books, these days, get sold without considerable marketing effort by the author.) Of course, that's why I didn't allow myself to think about this problem while I was at Edenfred--it could easily have paralyzed me, and then I wouldn't have accomplished anything. But sometimes it takes a lot of effort not to think.

Another friend pointed out that nobody can really plan how the future will take shape; people just think they can. Which is, of course, true. But I'd argue that those of us who live with existential uncertainty because of illness are a different breed. It's difficult to sit quietly and listen while friends plan their biking trips for next week, or their vacations next fall, or reserve hotel rooms for conferences next February, when these are events that I would, under different circumstances, also be involved in.

Last summer, when I had to cancel my plan to go to a chamber music retreat, I fell into a pit of despair, thinking I'd never be able to plan anything again. Soon enough, I climbed out of the pit by reasoning that I could plan to do things so long as, if I had to cancel, I wouldn't inconvenience other people. So, for example, last fall I recruited my friend and co-editor Robin to accompany me (and if necessary, substitute for me completely) on a speaking engagement in late April. Honestly, I didn't think I'd be around to give that talk. But last Tuesday evening, Robin and I drove happily off to Brookfield (near Milwaukee) and spoke to a group at the Unitarian church. Sold books, too!

Similarly, I now expect to be able to teach (with Robin) the last week in May in Door County; something I really questioned last fall, when we signed up. So planning is possible, but difficult.

As is quite obvious when I look out the window. Here it is, April 28, and it's snowing. Great big flakes.

Crocuses and My Voice

2008-04-14T12:45:00.002-05:00

Finally! The sun came out today, and the three or four clumps of purple crocuses in my front yard, which have been up for about a week, opened today. They're gorgeous. Ever since they started showing purple, they've been tightly wrapped around themselves--like me hugging myself, trying to keep warm. (We actually had some snow on the ground Saturday evening.) But as I say, the sun is out, and it's warming up quickly--they say tomorrow and Wednesday the highs will be well into the 60s. All I want to do is sit out on the front stoop and admire the flowers. Oh, and pump up my bike tires to see if I can manage 15 minutes on the trail near my house.

But what I'll spend time on, instead, is getting ready for a little in-town writing retreat next week, to work on revisions to the fear manuscript. I read through it last week (for the first time in two years), and was surprised and pleased to realize it won't take as much work as I--uh--feared. (To use the word loosely.) But I have a big pile of clippings and other material that's accumulated in the years since I finished the manuscript, and this week I plan to go through all that stuff and read it and sort it into folders related to each chapter. Next week, I'll just head every morning by 9 AM to Edenfred, the local artist's retreat where I've been generously offered a place to work, away from temptations like coffee with friends, the gym, email, and even this blog. So no post next Monday. Sorry, but if I don't completely clear the decks, I won't get the revisions done. Procrastination is my middle name. I should probably take solitaire off the laptop, too!

An email from an old friend who recently read my blog said it sounded like now I could talk, even on the phone. I realized that I haven't really made clear what's going on with my voice. It's true that the chemotherapy I've been on since last fall has improved matters significantly. My voice, as a number of people have commented in the past month or so, is much stronger. I attribute this (with no actual evidence) to the tumor on my vagus nerve letting loose its grip. I can breathe more easily, and speak more easily. But things are not perfect. I imagine the tumor is still there, hanging on a little. Or maybe it permanently damaged the nerve. The ENT doc I saw last fall said that sometimes paralyzed vocal folds recover completely; sometimes they don't, even if the cause (which could just be a virus, though obviously that wasn't my experience) disappears.

I can make myself heard fairly easily in relatively quiet places, but not in noisy restaurants or, say, on a busy street when a truck or bus is passing. I can have short phone conversations on good connections (usually land lines, but sometimes cell phones) with people who have no hearing problems (and you'd be surprised how many people, young and old, do--even if they're not aware of it). But I actually find even short conversations, like the one I'm about to make to schedule an oil change for my car, tiring. And the long, lovely conversations I used to have with friends and family are still quite impossible. I can speak in public with a microphone, but again, it's tiring, and I still need to share the podium with others, like my friend and co-editor Robin, who will come with me in the next couple of weeks when I have been asked to give two out-of-town talks about our retirement poems anthology.

What makes speaking tiring, I think, is partly psychological (will I make myself understood?) and partly physical. I just don't have enough breath to sustain a long sentence. I speak in phrases. I would like very much to be able to sing, for example, but when I tried it in the car a couple of days ago, I could only get out a word or two before I had to stop for breath. It's this limited aerobic capacity, also, which affects how much physical activity I can do. I'm much, much better than I was last fall, when I could only walk about a quarter of a city block before stopping, gasping to catch my breath. But on Friday night, when a friend and I parked and then walked a block uphill to a theater, I was very slow. Level is good--Robin and I walk for 45 minutes or an hour in the mall, and I don't gasp at all. Uphill is problematic. But I'm working on it. And I realize that if I were not working out several times a week, walking and going to strength training and spinning classes at the gym, I wouldn't be doing as well as I am.

And now, with the sun and the warmth, the crocuses and I have the whole outdoors to explore, at last!

Remember--no new blog post next Monday, but you can use the time to read old posts and post your own comments! And I'll see you back here on April 28. Cheers!

It's Spring....

2008-04-07T14:20:00.002-05:00

...and in Madison that means that there are promising days, and not-so-promising. The piles of filthy snow are (mostly, but not completely) gone; the street-cleaning machines seem to be getting a lot of the sand and salt out of the gutters; people are raking their lawns, which are ever-so-slightly less brown; the temperature went into the 60s over the weekend... and today it is again cold and windy and gray.

It's sort of like life. (Heck, it is life.) I had my CT scan on Friday, and saw Dr. Holen, who reported that the tumors are smaller, and some of them are no longer visible! Hooray! But I also had chemo on Friday, and the after-effects laid me low for pretty much the entire weekend. It occurs to me that I try very hard to put on the best possible face, in this blog, and when I see and speak with friends and family, and for myself, too (in fact, mostly for myself)-- and a lot of people, as a result, think I'm "courageous" (which I'm not) and (probably) also insanely perky.

So here are a few sentences describing the downside, aka this past weekend. I felt fluish most of the time--nauseous, a little feverish, tired. Pretty much all I did on Saturday was sleep and put one load of laundry in the washer. Sunday was a little better: two more loads of laundry, and tidying the kitchen. Naps. Virtually the entire Sunday Times. A couple of chapters of Drew Gilpin Faust's history of how the Civil War changed Americans' understanding of death, This Republic of Suffering. It was beautiful outside, and I really wanted to take a walk, but I couldn't motivate myself to open the door until near sunset, when I saw my neighbors, who had brought over a piece of cake a couple of days earlier, walking past the house. I opened the door to return the plate. That was the extent of my "walk." I had a brief conversation with Kim (the neighbor); she was the only person I talked to the entire weekend, except for a couple of brief phone conversations with my friend Helen. Helen and I hoped to get together, but she's an MRI tech and was on call all weekend; worked all day Saturday and until 3 AM Sunday morning, and then went back to the hospital to work some more late Sunday morning. So getting together was out of the question.

I felt physically cruddy, and extremely sorry for myself.

Today is much better. I worked out at the gym this morning; I feel good; I'm getting some work done. Filed my income taxes, for example. Wrote this entry. Am about to read another chapter of the fear manuscript. And... there are purple crocuses blooming in my front yard!

Up, down, up. It's spring.

Tunic Pix

2008-04-03T20:05:00.004-05:00

As promised....

Chicago: "Carousel," Church, Courage

2008-03-31T14:52:00.005-05:00

This past weekend, Jed and I went to Chicago. The idea for the trip was his. The evening before Easter Sunday, he said he had a "wild and crazy" idea. "How'd you like to go to church tomorrow?"

"Not at all," I said.

His idea, as it turned out, was to go to services at Trinity United Church of Christ in south Chicago, the church Barack Obama sometimes attends, where Rev. Jeremiah Wright is now senior pastor. I said I had other plans for Easter Sunday (going to a movie with a friend), but I thought it would be fun to go to Chicago, and interesting to attend a service at Trinity.

So Saturday afternoon we headed south; met my writing friend Anne-Marie for a wonderful dinner at Topalabampo; went to a good, somewhat minimalist revival of the 1946 musical, "Carousel," at the University of Chicago's Court Theater. I was surprised by how many words of those old songs I knew. (I'd had the same experience earlier in the month at a revue of Irving Berlin songs. I think it has to do with growing up in the 1950s, when all that music was on the radio, and also with music classes in elementary school, when we sang lots of songs, many either popular or patriotic.)

Of course, the most moving of the "Carousel" songs, especially for me, is "When You Walk Through a Storm." And that's really the theme of the show (it having been written just at the end of WWII): "When you walk through a storm/hold your head up high/And don't be afraid of the dark./At the end of the road is a golden sky/and the sweet silver song of a lark//Walk on, walk on, with hope in your heart/and you'll never walk alone...."

What was interesting, was that this was also one of the themes of Sunday morning's service at Trinity, which has certainly been at the center of a storm recently. (As we were entering the church, a woman looked at us and said, "It's so nice to finally be going to church without all those TV cameras!") I had thought of our visit as similar to the visits I used to make to churches of various denominations when I was in high school, with others in the American Friends Service Committee youth program: something interesting to do. But it was immediately obvious that we--and other visitors--were really there as supporters of a beleaguered congregation, and we were very warmly welcomed.

The service was joyous, full of music and choreographed dancing by the "dance ministry" group of young people. Yesterday happened to be Youth Sunday; the youth choir sang, many members wearing really colorful African dress; and much of the service was led by young people. A high school senior, Anita Pennington, gave the sermon, which was about "persistence and consistence" in action, faith, and prayer. She was a powerful speaker, especially when she was talking about being persistent and consistent in "fighting for justice and fighting for our rights." She talked about the way Martin Luther King continued his pursuit of racial equality and justice even when his life was threatened, but she also referred to the inspiring persistence and consistency of King's widow, the widow of Malcolm X, and the mother of murdered 14-year-old Emmett Till in working for civil rights even after their devastating losses. The implication was clear: Trinity's members must continue on their path despite the storm of publicity and attacks on Rev. Wright, and the (politically necessary) less-than-fervid endorsement of Wright by Barack Obama. I'm not sure anyone at the church mentioned the word "courage," but it was really a service devoted to courage and hope. I think there must have been a thousand or more people in attendance--every seat in every pew was filled, and there were people standing along the back wall, as well as people in an overflow room somewhere, watching on video--and for sure, all those people were walking through the storm with their heads held high. They are black, and they are proud: of Jeremiah Wright, of their church, and of themselves.

The church bulletin included a fascinating and well-written defense of Wright by Tim Wise, a white man, the author of a memoir, White Like Me, and "among the most respected anti-racist writers and educators in the US." You can read the essay, "Of National Lies and Racial Amnesia: Jeremiah Wright, Barack Obama, and the Audacity of Truth," on Wise's web site: www.timwise.org. Just click on the essays archive.

On other subjects: next Monday, I'll give you a report on the CT scan I get this Friday. And I promise those who've asked that I will put up some pictures of the calligraphed tunic (see the last post, if you don't know what this is) as soon as I get a chance. Also--to those of you who do comment and wonder why I haven't responded: I don't get the email addresses of commenters. So if you want a response, please, please, send me an email with your address! But don't stop commenting! Thanks...

New Art

2008-03-24T15:46:00.004-05:00

First, a correction. Several people have noted that a couple of weeks ago I wrote that my "next" CT scan would be March 21. That was a mistake. It's Friday, April 4, and I will report the results in my post the following Monday, April 7.

And now about that art! My living room has a new piece, a beautifully calligraphed tunic, conceived and executed by my college friend, Chris Emerson. Chris (with assistance from another college friend, Deborah Young) emailed a bunch of family and friends, asking them to contribute words for the project. Chris chose the words she wanted to write--they include "grasshopper" (a family joke), "Judy" (written upside down, so I know who I am, if I'm wearing the tunic), "cousin," "antelope" (my totem animal), and quite a lot more. And then she wrote them, artfully dispersed, on the unbleached cotton tunic.

I imagined the tunic displayed on a dressmaker's dummy (also known as a "dress form") and last week I found one on the web and ordered it. It arrived on Thursday, and Jed (who arrived for another visit Friday morning) hauled the big box inside and helped me set up the dummy, which is surprisingly elegant. Now clothed in the tunic, it stands in front of the fireplace (which is never used), ready for viewing. I plan to have a viewing party in the relatively near future for the contributors-of-words, but anyone who'd like to see it can just come by! It's really wonderful, and very meaningful, and I'm both touched and delighted to have received this gift.

In other "art" news: the manuscript I wrote while I was on chemo three years ago during the first attempt to treat my stomach cancer has been accepted for publication! Borderland Books, an imprint distributed and marketed by University of Wisconsin Press, will bring out the book, tentatively titled Facing Fear, at a date yet to be determined. First I have some revisions to do--and since it's been two years since I finished the manuscript, and I haven't read it since then, I don't have the slightest idea, yet, what will be involved in the revision.

I decided to write a book about fear right after the 2004 Presidential election. I was thinking about a new project, and I decided that if Kerry won, I could try to revise the very bad draft of a novel I'd written the previous year. But if Bush won, I was going to find a way to write about the long-term consequences of the political manipulation of fear. I'd been thinking about this since 1986, when a right-wing nut murdered my college friend Chuck Goldmark, his wife, and two young sons. The murderer apparently confused Chuck, a liberal attorney, with his father, a respected Washington State legislator who had been red-baited and voted out of the legislature during the McCarthy era. In a sense, I believe, Joseph McCarthy and the politics of fear were responsible for these deaths.

I went to Seattle to do research for the book in January 2005, coincidentally the month my cancer was diagnosed. The book quickly morphed into a much larger meditation on fear--where it comes from, and how to cope with it. Even as I was writing, I realized that I was trying to get a grip on my own fears of cancer and death. And when I finished the manuscript, I knew that in some ways it didn't matter whether it was published: I had written it for myself, and it had served a really important purpose, teaching me how to live my life with joy and hope, despite a truly awful diagnosis.

Still, as you blog-readers might have noticed, I do want other people to read what I write! So I'm absolutely delighted that the book will actually see the light of day. Borderland publishes gorgeous books, and I'll also put at least part of the text on the web, to try to maximize readership. Keep reading the blog, and you'll be among the first to hear when Facing Fear is available.

But that won't be for a while. First--those revisions!

Advocating for Single-Payer Insurance

2008-03-17T19:02:00.007-05:00

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.

Travel

2008-03-10T15:32:00.004-05:00

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.

Horses!

2008-03-04T15:30:00.002-06:00

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.

TTBOOK Commentary

2008-02-25T15:45:00.003-06:00

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.

Some Bits of Miscellany

2008-02-18T12:52:00.004-06:00

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!

Hillary, Barack, and the Passage of Time

2008-02-11T13:28:00.000-06:00

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!

Warming Up!

2008-02-04T13:37:00.000-06:00

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!

Fear

2008-01-26T15:53:00.000-06:00

Now, this is an odd topic for a post I'm writing just an hour-and-a-half before I leave for the Virgin Islands! But it's something I've been meaning to write about since last fall-- and it's also an excuse to invite those of you in Madison to my next reading, on Tuesday evening, February 19, 7:00 PM at Avol's Bookstore, 315 W. Gorham St. I'll be reading from my unpublished (maybe never-to-be-published) memoir about fear. It's likely the only opportunity you'll have to experience any part of this magnum opus, so do come!

Last fall, someone asked me if I was afraid. "Of what?" I asked, surprised by the question, even though it came in the middle of a fairly serious conversation. I explained that I don't see any reason to be afraid of death (although I know a lot of people, especially young people are-- and I was probably afraid of it when I was younger, too). As far as I can tell, when you're dead, you're dead. It's the people who are left behind who suffer, not the dead person. The people I feel sorry for are the ones who believe in a literal heaven and hell; they must worry about where they're going to end up. Though someone explained to me that those people also believe in salvation, so they don't actually have to worry, even if they're terrible sinners. Anyway, that's clearly not my theology.

The process of dying is more problematic. Of course, I'd like to avoid pain and suffering, and especially would like not to subject friends and family to endless days and weeks of watching me suffer. But I've done what I can (having a healthcare power of attorney who knows my wishes, and a signed DNR order) to ensure that I'm not subjected to procedures that might lead to unnecessary pain and suffering. And I have a certain amount of faith in my doctors, hospice, my relatively high tolerance for pain, and the power of morphine to make the process of dying as easy as possible. And as I mentioned in December, in my post about my friend Jane Henkel, I was relieved to realize, from her experience, that a cancer death can be relatively quick and doesn't necessarily involve a weeks-long death watch.

I've thought about all this several times recently, when I heard Susan Sontag's son, David Rieff, interviewed by Terry Gross, and when I read the review in the current New York Review of Books of Rieff's memoir of his mother's death. Sontag, according to Rieff, clung so fiercely to life that she insisted on an extremely painful bone marrow transplant, even though doctors said it was extremely unlikely to work, to treat her third cancer, a rare blood disease. I had previously had enormous respect for Sontag; her book, Lllness as Metaphor, came out just after I had Hodgkin's disease, and I thought it was very wise. But when I heard about Sontag's insistence (from the time she was 16, apparently) that she would not allow death to shorten her life, I was appalled at her arrogance. Not as a sixteen-year-old; most teenagers believe they're immortal, after all. But it seems to me that a highly-intelligent woman of 70 who had already survived two cancers (breast and uterine) should understand that no one lives forever; that she has been granted more than twenty years (since her first, very serious, cancer) because of her privileged economic and social status; and that gratitude and acceptance, rather than arrogance, are more appropriate responses. Though I suppose that doesn't have much to do with intelligence.

Sontag was apparently so focused on living that she refused to talk about death, or to accept that she was dying; something that continues, two years after her death, to upset her son, who felt he could only support her wishes, rather than tell her the truth about her situation. This, obviously, is so different from my attitude that it's almost incomprehensible to me. And I'm grateful both for the blog technology and for the forbearance of my readers that I am able to talk, or at least write, about the truth as I see it.

No, I'm not afraid. I'm also not dying at the moment! I'm waiting for the taxi to start me on my vacation with the sun and the pretty fishes. Back in a week or so.....

Snorkeling and Chemotherapy

2008-01-17T08:28:00.000-06:00

First, a reminder: If you want to be notified whenever I've added a post to this blog, scroll all the way down to the bottom of this page and click on "subscribe." Don't worry--you won't fry your computer, whatever you click on! Experiment a little, if you're confused by the lingo.

Snorkeling: I was thrilled, this week, to discover that I have enough breath to snorkel! At the end of this month, I'm going to visit my friend Jackie, a speech therapist who's working on St. Thomas and St. John in the Virgin Islands this semester. I really wanted to be able to snorkel, but last fall when I tried to swim (at the gym), it was a near-disaster. I slid into the lap pool and the cold water knocked out what little breath I had left (this was before, or maybe just after I started chemo again in October). I managed to swim about a half a length, gasping, very close to the wall of the pool, before I realized that there was no one at all, except me, in the pool room, and this could be the stupidest thing I'd ever done in my life. So I got out of the lap pool, and tried swimming in the warm water pool. That was better, but not great. And although I didn't try snorkeling then, I'm sure it would have been extremely difficult, if not impossible.

So it was with some trepidation that I took my snorkel and mask to the warm water pool on Tuesday. But it was no problem! So I am off to see the pretty fish on Jan 27.

Chemotherapy: Last Thursday, when I was sitting in the oncology clinic getting my chemo infusion, it occurred to me that people (at least some people) might be interested in knowing what this is really like. (If you're not one of those people, you can stop reading now.) In my experience, chemo has changed enormously in the past 25 years; all I can remember from my Hodgkin's chemo is spending two days after each treatment on my knees in front of the toilet. But that was before anti-nausea drugs were available. I recently mentioned to a long-time chemo nurse that I thought it was odd that I had no memory of actually receiving the Hodgkin's chemo. "Oh," she said. "That's because we used to knock you people out so you wouldn't get sick before y9u left the clinic." Oh.

Of course there are many different types of chemo, and different people have different reactions to each of them. But here's what happens to me, on my current regimen. I'm now getting oxalyplatin and 5FU; this is the third kind of chemo I've had for stomach cancer. (The other two regimens stopped working, which is common. The tumor cells eventually evolve to get around
whatever was stopping them from growing.)

I get an infusion of oxalyplatin every two weeks, on Thursdays. This involves sitting in a chair in the clinic for at least 2 1/2 hours--a half hour while the pre-med pills (a steroid, dexamethasone, and an anti-nausea drug) take efect, and then two hours while the oxalyplatin runs through my veins. I have a port--a direct line from my chest into a vein--installed because I long ago ran out of really good veins to access for an IV line. The Hodgkin's chemo effectively destroyed the veins in my right arm, and after a couple of rounds of chemo for stomach cancer, it was just taking too much time for the lab techs to find decent veins in my left arm.

The infusion, including accessing the port with a small, fine needle, is painless. I sit there and do the Times crossword puzzle, read the New Yorker, and watch DVDs. A year ago, for my birthday, my sons and sister Susie gave me a really terrific present: a portable DVD player and a Netflix subscription. I would never have imagined I could enjoy a present so much. I've been working my way through "Six Feet Under," one episode per infusion--I'm at the end of the fifth season now, and because my sense of irony may be fading, I'm thinking of getting "The Wire" next.

As soon as the oxalyplatin infusion is done, I get hooked up to a portable pump, which I wear for 46 hours while it infuses 5FU into my veins. (Another reason for having a port; I couldn't very well walk around Madison for two days with an IV pole.) Again, this is totally painless. I disconnect myself from the pump on Saturday morning, and go on my way.

Of course, there are side effects, but really, they're not too bad. And I'm amazed by how predictable they are. After the Thursday treatment, I'm pretty wiped out, and often just go home and sleep. Until this last treatment (last Thursday), the steroid perked me up by Friday morning and carried me through the weekend. For some reason, last week that didn't work. Maybe I was fighting some other bug, or maybe I was still recovering from my New Year's trip to Zion and LA, but I slept pretty much all of Friday. I'd get out of bed, do something strenuous like reading the newspaper, and then decide I had to crawl back into bed. By the time I disconnected from the pump on Saturday morning, though, I was pretty much back to what passes for normal energy for me these days.

The most stunning side effect of oxalyplatin, which apparently happens to virtually everyone, is extreme cold sensitivity. I have to wear gloves to take things out of the refrigerator! If I eat or drink something cold, the inside of my mouth tingles. When I go out in the Wisconsin winter, the insides of my thighs tingle, my hands tingle and even sometimes get kind of rigid, my face tingles and my jaw freezes. This effect starts pretty much right away, and lasts about four days. It's worst on Friday and Saturday, I think; by Monday, it's pretty much gone, or at least so tolerable I don't notice it very much. It's not a painful sensation, but it's not exactly pleasant. Sort of like the prickles you get when an arm or leg has gone to sleep and is waking up.

On Sunday, I often get another side effect: stiff calf muscles. But stretching takes care of that.

By Monday, I'm really beginning to feel good, and this feeling only improves for the next ten days or so, until the next chemo treatment. But a week after the treatment, again pretty much like clockwork, I notice that the insides of my mouth and nostrils--places where cells are turning over pretty fast--have become sensitive. The sores (if you can even call them that) last only two or three days, but I can't eat spicy food because it burns my mouth. Not really a big deal, except when (like last night) I forget to tell the waiter to ask the chef to leave out the red peppers in the sauce for the mussels and clams!

The long-term side effects of chemotherapy include destroying the villi that line the intestine and are instrumental in absorbing nutrients, and destroying red and white blood cells, or the ability of the bone marrow to replace them. I've had a lot of gut problems and consequent weight loss, though I think I'm finally getting that under control. I haven't had any problem with my white blood cells; I did have some anemia, but twice I got Epo shots (Epogen--the same thing some nefarious athletes use in blood doping), and I guess that worked, because last week, my red count was good enough that they didn't give me a shot.

So there you have it. I wouldn't say chemotherapy is unmitigated joy, but it isn't the horror that many people assume. And I do think that the assumption that it will be a horror feeds a fear that only makes the experience worse.

If you have questions about all this, post a comment, and I'll be happy to answer, if I can.

Visits and Visitors

2008-01-08T22:03:00.000-06:00

Just got back at midnight last night from a vacation with my sons and Jed's significant other at Zion National Park and in Los Angeles. A terrific nine or ten days' respite from thinking of myself as a "sickie." No doctors; no chemo infusions. Just beautiful scenery (we also drove through Bryce Canyon); some short hikes; a truly spectacular Cirque du Soleil show in Las Vegas; and lots of good conversation and love. In LA, I saw my long-time (since college) friends Claire and Deborah, and also my sister Paula who, like Deborah, lives in San Diego County. They drove something like six hours round-trip on very rainy freeways to spend a few hours with me.

I have been trying to get away from Madison for at least a long weekend every month. I really do feel much more like a normal person when I'm not in the shadow of the hospital (almost literally, since I live within walking distance). And of course it's wonderful to see my kids, my sisters, old friends, and I'm happy that they really want to see me. But on this trip, I became very aware of the complicated balancing act required to satisfy other people's desire to spend time with me, and my desire to live my life as normally as possible for as long as possible.

Since the beginning of last summer, I have had a lot of visitors: friends and family who have come to Madison for as little as a few days or as much as a week. They want to spend time with me, and of course when they're here, I want to spend time with them. But when you combine the time I have spent traveling and the time I've had visitors, and then add in the days I'm out of commission because of chemo and its effects, there are not a lot of consecutive days left to live my normal Madison life: spending time with Madison friends, practicing cello, writing.... For me, that's very frustrating. It's not just that I like solitude (which I do). Every visitor, and every day I spend with visitors, is a reminder that my life is not "normal." Much as I love all these people, I hate the reminders.

When we were at Zion, my older son, who just finished his first semester of law school, told me that he was taking a leave from school so that he could spend more time hanging out with me. He has what seem to me legitimate academic goals that he wants to accomplish during the next several months, and his professors agree that taking the time away from classes to write a paper that could be published is a good idea. The school will welcome him back when he returns, and will hold his scholarship for him. So the idea that he would take a leave was not hard for me to accept.

But then he said he'd come to Madison to hang out with me for three weeks each month! I was, I'm afraid, very visibly and vocally appalled. I'm flattered and touched by the idea that my son wants to spend more time with me. I appreciate his desire to be helpful, though at the moment my minimal needs for help (with shoveling snow or preparing for a party) are easily met by friends and neighbors. And I understand that it's important for him now, and will be important for him when, eventually, I die, to have spent time with me--though in my experience, one never feels one has had enough time with people who are no longer around. Still, how do I reconcile all this appreciation and understanding of his needs with my own needs and desires for solitude and for not perceiving myself as a "sickie." How can I even pretend my life is normal if my grown son leaves his home and his girlfriend 2,000 miles away to hang out with me three weeks out of every month?

Well, we compromised. This month he will come for a week or ten days, and he will do his work and I will live my ordinary Madison life, and we'll have dinner together occasionally, or take in a movie, or go for a walk, and we'll see how it goes. But it feels like a balancing act that the Cirque du Soleil might accomplish more successfully than I.

By chance, when I went to the airport this afternoon to pick up my fog-delayed suitcase, I met an old friend, a retired attorney who's close to 80, who'd just returned from spending a month in Seattle where his daughter has started treatment for ovarian cancer. When I told him about my son's desire to spend three weeks a month with me, my friend strongly urged me to let him do it. He didn't change my mind. But I was interested in his reaction, and I'd really welcome your comments and reflections on this conundrum.

New Year

2007-12-29T09:42:00.000-06:00

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!

solstice, christmas, chanukah

2007-12-24T16:13:00.000-06:00

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.

Writing and Work

2007-12-21T12:04:00.001-06:00

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!

Jane Henkel, In Memoriam

2007-12-12T11:23:00.001-06:00

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.

Ducks in a Row

2007-12-11T14:41:00.001-06:00

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!

Bicycle Dreams

2007-12-04T07:26:00.000-06:00

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.

Chemo benefits--and cost

2007-11-29T20:28:00.000-06:00

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!

Gratitude

2007-11-20T17:32:00.000-06:00

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.

Comments

2007-11-18T20:51:00.000-06:00

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!

I Do Exist!

2007-11-17T18:06:00.001-06:00

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?

2007-11-17T12:15:00.000-06:00

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!

Beginning to Blog

2007-11-15T17:35:00.000-06:00

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.