Monday, November 24, 2008

Possible Phase 2 Study!

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.

Monday, November 17, 2008


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 ( 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.

Monday, November 10, 2008

Chicago? - and more

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.

Monday, November 3, 2008

Before the Election

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!