Monday, December 29, 2008
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!
Monday, December 22, 2008
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.
Monday, December 15, 2008
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!
Monday, December 8, 2008
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?
Monday, December 1, 2008
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.
Monday, November 24, 2008
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
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.
Monday, November 10, 2008
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
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!
Monday, October 27, 2008
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.
Monday, October 20, 2008
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.
Monday, October 13, 2008
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.
Monday, October 6, 2008
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.
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:
Monday, September 29, 2008
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!
Monday, September 22, 2008
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 :
Monday, September 15, 2008
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.
Monday, September 8, 2008
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 and that there is considerable doubt about its safety. It has not been approved for this use by the United States' Food and Drug Administration. 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. 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.
Monday, September 1, 2008
The past few days have confirmed, or re-taught, some of the lessons I've been learning for the past 3 1/2 years: have fun, know your limits, accept help, don't sweat the small stuff (and a lot of the "stuff" is smaller than you think).
Starting with the last of those lessons: On Wednesday last week, I drove down to Chicago to meet up with my college friend Claire, who was stopping over en route to an amazing family reunion on the east coast. After a good dinner at an Armenian restaurant, we walked to Navy Pier for a terrific fireworks show. When we got into the cab to head back to the hotel, I realized that my purse was strangely light. (I'd just started carrying a purse instead of the travel wallet I've held in my hands for years, if not decades.) I unzipped the purse--and discovered that the travel wallet was gone, along with a couple of hundred dollars (including the wonderful billfold designed and folded by my son Jed from twenty one-dollar bills), four credit cards, my drivers license, university ID, library cards, AARP and AAA cards... You get the idea.
We asked the cab driver to take us back to the restaurant (the last place I'd had the wallet out), but when Claire went in to inquire, she got nothing but blank stares from four waiters. She was, I think, more upset than I was. In fact, I was strangely un-upset. Believe me, worse things have happened. And I was kind of amazed (and embarrassed) that Sleazebag Nimblefingers had managed to unzip the purse, lift the wallet, and re-zip the purse without my noticing.
Fortunately, Jed and Nazgol were still in Madison, and Jed was able to find, in the mess in my study, most of the info I needed to report the theft to the credit card companies. I called Chase first, and was astounded and touched that one of the first questions the customer service person asked me was, "Are you safe?" Bank of America asked me (as part of their security check) what my work phone number was--and even though I retired nine years ago, the phone number came right to mind! And the cs person at the third company was able to cancel both that company's card and the one I hadn't yet called. All this took place less than two hours after the pickpocketing, but Sleazebag Nimblefingers had already charged drinks (I assume) at several bars and something (beer?) at gas stations and a Jewel market. I'm sure a good time was had by all that evening! And yes, I was out a chunk of change, but he or she no doubt needed it more than I do. Claire owed me her share of hotel room; she gave me cash, which was more than enough to buy gas and lunch enroute back to Madison.
Don't sweat the small stuff.
As for the help and limits-- Saturday I was joined by four wonderful biking friends (Diane, Angie and Jim, and Gail) on the TeamSurvivor Chocolate Chase fund-raising ride. Angie and Gail decided to do the 20 mile option. Jim and Diane asked what my goal was and when I said 10 miles, they started off with me. Jim lost us after a pit stop in a cornfield, and after only 3 1/2 miles, I told Diane that I had changed my mind and wanted to stop after the 4 mile route. The ride was a bit hilly, and I could tell that I just didn't have the stamina to ride another 6 miles and be able to do anything more than nap for the rest of the day. And I did have other plans for the afternoon and evening! So I sucked up my pride and called it quits. I think the limits on energy/endurance are related to lingering effects of the pneumonia, and I have no interest in courting a recurrence of that. So I'm actually proud that I knew and respected my limits. And that I had no qualms at all about accepting Angie and Jim's help in wrestling the bike back into the Subaru.
And--best of all, and a little reward (I think) for my good sense: at the raffle after the ride, I won a $20 gift certificate to David Bacco Chocolates, an expensive and exquisite place I have heretofore only patronized for gifts for others!
As for having fun: what could be more fun than the past week, which (in addition to the above) included two days with Jed and Nazgol including a visit to the House on the Rock tourist-attraction-supreme; an overnight stay in Wilmette, Illinois, with my high school friend Barbara; two concerts at the Token Creek chamber music festival; a walk at dusk with my friend Sandy in search of great horned owls...
This week it's back to what passes for normal life around here, with a CT scan and visit to the oncologist on Thursday, and who knows--probably, I'd guess--resumption of chemo. But there are still a few days before all that. And I'll post a health status report next Monday.
Tuesday, August 26, 2008
I really have been away from cyberspace for most of that time. Nate (younger son) and his partner, Meghan, arrived in Madison on Thursday, August 14. They'd moved out of their Somerville MA apartment a week or two before, and had been visiting various branches of Meghan's family on the east coast before heading west in their rental car. Eventually, after seeing lots of friends and more family and going to weddings east and west, they will head to Bogota, Colombia, where they both have fellowships for the next year to study and work on various aspects of environmental and human rights law. But the day after they got to Madison, we headed north to Duluth, where we met Jed (older son) and his partner, Nazgol, who had just flown into Minneapolis from France, where they were celebrating Nazgol's successful completion of her field exams for a PhD in sociology.
On Saturday 8/15 the five of us continued north, on Highway 61 (yes, the same one Bob Dylan named his second album after) along the shore of Lake Superior to Grand Marais. After a bit more provisioning (we'd already loaded up at coops in Madison and Duluth, as well as the Duluth farmers' market) we turned inland on the Gunflint Trail and drove another 43 miles into the Boundary Waters, where we'd rented a cabin for the week on Gunflint Lake. And what a week it was! Perfect weather, minimal mosquitoes and black flies, endless raspberries and blueberries ripe for picking, two canoes provided with the cabin, a rental motorboat and a fine restaurant at nearby Gunflint Lodge. Lots of swimming for the other four, though I didn't venture in because the water was pretty cold, reading, fishing, canoeing, game playing, conversation, relaxing. And really beautiful scenery, even though the opposite shore (Canada) suffered a devastating forest fire last summer.
One day we all canoed across Gunflint and Magnetic Lakes; then Jed and Nate took the canoes though a rapids and we went a short distance down river, picnicking on shore just above a small waterfall. I thought I'd paddle back, because we'd had a headwind on the way across, and I could benefit from the tailwind on the return. But of course--just like biking!--the wind shifted and intensified as we started home. So I paddled across Magnetic, and then, in the interest of getting back to the cabin before we all starved, turned the paddle over to Jed before we hit Gunflint. But I was pleased with my effort.
And the exercise stood me in good stead a few days later, at the dragon boat race in Superior. We all drove down on Friday, getting to the motel just after the TeamSurvivor bus arrived from Madison. Jed, Nazgol, Nate, and Meghan did me the honor of waking up early on Saturday, in time to watch me race at about 8:15 AM. Although TeamSurvivor raced in two heats, we had more paddlers than seats in the boat, so some of us--by the luck of the draw--had to sit out one race. I was not unhappy to be on the short end: between the stiff and cold headwind, my lingering pneumonia, the difference between practice (easy) and racing (intense--the longest three minutes you can imagine), and the opportunity to spend more time with my kids, it seemed to me good fortune to have only one race! And with luck, I'll have another chance at the Oshkosh dragon boat regatta in September.
Nate and Meghan headed west toward Glacier National Park mid-afternoon Saturday. Jed, Nazgol, and I spent a delightful hour or so at the Amazing Grace Cafe in Duluth's Canal Park with some of my biking friends from Eau Claire and Madison. Angie, Janet, Renee, Rene, and Eleanor (along with six other women) had just finished a loop ride from Duluth into the Mesabi Iron Range west of the Boundary Waters (Dylan's home town of Hibbing was on the loop). We all caught up on our latest adventures, and then Jed, Nazgol, and I drove to Minneapolis, returned the rental car, re-rented it, and drove back to Madison, arriving home about 2 AM on Sunday!
I was absolutely fried on Sunday, even though I slept in to 10:30, probably the latest I've slept in years, and all we did was grocery shop and go to an Obama fundraiser for a short time! But by yesterday (when I should have been writing the blog), I'd recovered enough to do a bunch of errands and then head out to House on the Rock to show Nazgol one of the area's prime tourist attractions. I remembered the place as totally exhausting, but in fact, it was a lot of fun. I think they've reorganized the exhibits so they're not as overwhelming as they used to be. Or I'm older. Or something! Anyway that--and eating out and watching a movie--was what I was doing yesterday instead of blogging.
Vacation continues this week with a short jaunt to Chicago--and next week, it's back to reality, with a CT scan and an appointment with the oncologist and, who knows, maybe even chemo. But I'll post again before that happens!
Monday, August 25, 2008
Monday, August 11, 2008
Today you get stories in pictures. The first (actually illustrated by the photo below) is a story I told a couple of weeks ago, about the wonderful bike ride I took on Mackinac Island the day before my biking friends headed out on their Upper Peninsula loop. Angie Mayr took this picture. It shows Janet Zimmerman (on the left) and me, and a tiny part of Lake Michigan.
Since that day (which really was a high point in the annals of my biking history), I've done two more short rides. As I think I reported, on the last day of the UP ride, I did the first 11 miles, into a headwind, not knowing that I had pneumonia. And this past week, on Friday, my friend Bonnie Wiesel and I rode from my house to the Olbrich Botanic Garden on Madison's east side (6 or 7 miles one-way) to see the butterfly exhibit. We saw quite a few butterflies emerging from their chrysalises--an amazing sight, because it happens literally in the blink of an eye. But really, I thought the people watching outdid the butterflies. I haven't seen so many babies and toddlers in decades! Plus little herds of day care kids and day campers, each herd wearing t-shirts of a particular identifying color. After we'd had our fill of butterflies and children, we walked a bit in the outside gardens, ate our Power Bars, and rode home. It was a beautiful day, and a lovely ride, for which I have Bonnie to thank, since it was her idea.
The other picture is more recent--from last Tuesday's reading in Chicago. Six of the contributors to the anthology Fresh Water: Women Writing on the Great Lakes read at the Peggy Notebaert Nature Museum, part of a summer-long Read Green, Live Green project sponsored by the Chicago Public Library. The participants: in the front row, Alison Swan, who edited the book and lives in Saugatuck, Michigan; Gail Louise Siegel, from Evanston, Illinois; and me. In the back row: Judith Arcana, who came all the way from Portland, Oregon (she used to be a Chicagoan); Susan Firer, currently Poet Laureate of Milwaukee; and Donna Seaman, of Chicago, who initiated the reading. Not shown in the photo: the great blue heron, the V of geese, and the rat who joined us as we read in the courtyard behind the museum. (To be honest, I didn't see the rat, but others did.)
The reading was an amazing event, well attended by an enthusiastic audience, including many people who were taking part in a workshop on the Great Lakes. The library provided an elegant reception spread of delicious hors d'oeuvres, and in addition to paying us honoraria, put us up in the Talbott Hotel downtown. I'm not accustomed to staying in hotels that provide terry cloth bathrobes and turn down the covers (leaving little chocolates on the pillows) before bedtime. But I could get used to it!
I had been concerned that, because of the pneumonia, I wouldn't be able to go to Chicago. But I was--and am--feeling much better, and the driving was a breeze, especially because my friend Janet lent me her I-Pass and I just whizzed through the innumerable toll plazas on I-90.
Now, on to the next adventure: getting together with my sons and my daughters-out-law at a cabin in the Boundary Waters (northern Minnesota). More on that next week!
Monday, August 4, 2008
But I just did it! Both ears! No problem! Wahoo! Obviously, the neuropathy is resolving, though it's by no means gone.
But in fact my breathing was no worse than it has been all summer (ever since the June blooming of the Japanese lilac trees, to which I am allergic), and it is distinctly better than it was a year or even six months ago, though it is by no means what I or anyone else would consider "normal." This particular doc, who was subbing for my primary care guy, had never met me before, so she was shocked by my impaired breathing, and I think didn't believe me when I said it was no worse than usual. And apparently the first couple of days of pneumonia are the most dangerous. But I started running a fever on Friday, and I didn't see her until Monday--I was already past the first couple of days. And in fact on Saturday morning I'd felt good enough to bike 11 miles into a head wind.
Anyway, I started popping pills Monday afternoon, and they worked just fine. By Tuesday, I didn't need to take Tylenol in the afternoon; by Thursday, I didn't have a fever at all. I saw the doctor again Thursday morning, and she was much reassured--even embarrassed because she couldn't hear anything problematic when she listened to my lungs. She said that it takes 6-8 weeks for pneumonia to completely resolve in someone who has no underlying lung disease, which of couse I do have. So we'll see what happens. They can check on the pneumonia when I have my next CT scan, soon afer Labor Day.
I was supposed to take the levaquin for ten days, but yesterday morning I woke up with hives on my legs which I suspected was an allergic reaction. Went off to Urgent Care, where my suspicion was confirmed by another doctor who said to stop the antibiotic. He also said that the drug does most of its work in the first two days. I'd taken the drug for six days and he wasn't inclined to prescribe a substitute unless I relapse. I'm now allergic to four different classes of antibiotics, so that was fine with me. He did write a prescription for something I can take with me up to the Boundary Waters in a couple of weeks, in case I get sick up there where there are more loons than medical personnel.
So there you have a blessing of modernity: you contract a dread (and formerly fatal) disease, pop some pills, and are miraculously cured. Would that it worked that way for all dread diseases. Stomach cancer's a little more recalcitrant.
And then there's the saga of my new laptop, sterling example of modernity's curse. Well the laptop, which I picked up on Monday (between getting the x-ray and learning the diagnosis), is lovely. But I can't get Thunderbird, my email program, to work, and even if I could, all the addresses are stored somewhere on the old computer, not this one. What's more, I can't get the laptop to communicate with my old, reliable laser printer. Maybe this is a cable problem; maybe not. But I had to order the new cable on line, and the only way to determine if it's defective, I think, is to order another one on line and wait for it to arrive. Of course as some snippy young man at the UW IT help desk suggested, I could just buy a new printer. "They only cost $20 or $30," he said, rather impatiently. But why would I junk a perfectly serviceable, indeed wonderful, old friend? I'm afraid this was a case of generational disconnect. I guess that like my printer, I'm operating on a parallel connector, and this unhelpful and wasteful "support person" is, like my laptop, only conversant with spiffy new USB connectors.
And of course, while I was trying to get the printer to work, the word processing program, which had been running just fine, crashed, permanently, I think.
But hey, all this is just the usual curse of technology, and we know that a little time and money solves that sort of problem. So I'm not as aggravated as I might be. I'm feeling fine, and that's what really matters.