Thursday, January 29, 2009

Judith Strasser, 1944-2009

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 fiancĂ©e 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.

Monday, January 26, 2009

Changing Voices

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.

Tuesday, January 20, 2009

Remarkable Day

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!

Monday, January 19, 2009

Choices

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!

Wednesday, January 14, 2009

Bulletin: :No trial, no Chicago

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.

Monday, January 12, 2009

On to Chicago

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.

Monday, January 5, 2009

More vacation!

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!