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.