Thursday, November 29, 2007

Chemo benefits--and cost

Hello blog-readers! I'm delighted to report that the CT scan I had yesterday showed that, as I thought, the chemo is working to shrink the tumors, at least a little. I feel so much better than I did in mid-September, before I started back on chemo, that I thought it had to be working. In fact I was so un-stressed-out about seeing the oncologist this time that my blood pressure was only 116/60, or something ridiculous like that. But it was nice to have it confirmed.

But the cost! Forget about side effects-- I mean the dollar cost of this therapy (oxalyplatin, for those who like details). I learned today that it is $14,000 per month! It's entirely covered by insurance--Medicare, in my case. But it's kind of breathtaking to think about whether one's life is "worth" so much money. When my father was in the hospital, just before he died, he was adamant about refusing even relatively routine tests--a CT scan of his head, I think was one--on the grounds that we spend way too much money on the last six months of life, and it would be money much better directed toward prenatal and infant care so that perhaps the US would join other developed countries in reducing infant mortality. My dad was adamant that I read a book he'd just read on the subject of rationing health care in this way.

At the time, of course, I said, "But you're talking about public policy, and we're talking about you. Two different things." And of course they are two different things--and I'm not going to stop chemo that's improving my quality of life, just to save Medicare $14,000 a month that wouldn't go to prenatal or infant care anyway. But it did give me pause.

And I'd be very interested in your comments on this. You don't need to be a "member" of anything to comment. Just hit the comment button and post your reaction. I will be moderating the comments, but be assured that anything you say about this will be published.

And hey-- thanks for paying your taxes and contributing to my improved health!

Tuesday, November 20, 2007


I should be packing for my trip to DC, but I've been thinking all day about writing one last post before I leave both Madison and the blog for the weekend. I'm calling it "gratitude," though I think that word's more than a little over-used these days. Isn't "thanks" good enough anymore? But "thanks" isn't exactly an attitude, and "thankfulness" has a kind of made-up, awkward quality to it. Anyway, here are a few of the things I'm thankful for--all the time, not just in this week of gobbling good food:

The radiation therapy that helped cure my Hodgkin's disease in 1982, and no doubt caused the tumor that grew in my stomach, smack in the middle of the radiation field. It enabled me to live long enough to raise my sons, who were 3 and 6 when the Hodgkin's was diagnosed, and to see them become young men of whom I'm very proud.

The health insurance I was able to get through my former employer, the State of Wisconsin. Also, Medicare-- that "socialized" medicine option for those of us who are disabled or over 65. Everyone should have such options.

My highly-skilled and very compassionate doctors, nurses, and other health care providers.

The nearly three years since I was diagnosed with stomach cancer, and especially the past 15 months, since I learned it had spread to my lungs. Recently, someone looked deeply into my eyes and said, a little too soulfully for my taste, "You're on a journey." I wanted to say, aren't we all? Because of course we are, from the moment we're born. But it's a real gift to have the nature of the journey so impressed on you that you not only want to live fully, consciously, without regret--but actually try to!

The technological advances that make it possible for me to communicate without much of a voice. (Big concession from a would-be Luddite.)

And most important, the friends and family who provide emotional and physical support in whatever way they can: through e-mail, little gifts, dinner invitations, offers of rides, prayers.... Too many ways to enumerate!

May you all have a wonderful Thanksgiving with your friends and loved ones, and may you gather back here next week when I will have some suggestions about how we can create a real discussion in the comments section about realities (illness, dying, death, the benefits of socialized medicine, to name just a few) most of us find hard to face.

Sunday, November 18, 2007


I think I have figured out how you can comment on the content of this blog without sending me an e-mail message. I will be moderating the comments; what you write may or may not get "published" on the comments page, depending on how I feel. (This is my blog, after all. If you want total freedom of speech, set up your own blog!) If I end up being overwhelmed by the task of moderating comments (not too likely), I'll just disable this function.

So-- leave a comment here, if you'd like!

Saturday, November 17, 2007

I Do Exist!

Here they are!

The problem wasn't my techno-naivete, but a Blogger problem that thousands of people had & Google quickly fixed. (On a Saturday-- they do work hard. Sarkozy would be envious.)

Top to bottom: 1. Reading at the Capital BookFest in Largo MD, early October. Photo by Susie Strasser.

2. In Nate Ela and Meghan Morris's apartment in Somerville, early October. Photo by Nate Ela.

3. Lake Effect Poets' reading at the Wisconsin Book Festival, Madison's Overture Center, mid-October. Left to right: me, Catherine Jagoe, Alison Townsend, Robin Chapman, Susan Elbe. Photo by Jed.

4. Me reading (slow, soft, and gasp-y) Grace Paley's poem, "Here," from the anthology Robin and I edited, On Retirement: 75 Poems, at the Book Festival. Photo by Jed.

5. Reading one of my poems, Catherine listening, Photo by Jed.

How to Subscribe - and photos?

I just disconnected myself from the chemo pump I have to wear for 46 hours after each bi-weekly chemo infusion at the clinic, and to celebrate, I'm returning to the task I tried (unsuccessfully) to accomplish yesterday: posting a little slideshow of recent pictures, mostly of me reading at various venues. I've discovered that unless people actually see or touch me, they don't seem to be certain I exist. This is particularly true of out-of-towners, of course; but even local friends I haven't seen recently seem eager to see me. Well, OK, but I don't know if I've got the technology down. We'll see. You'll see.

Also, some of you have e-mailed to say you don't understand what happens when you click "subscribe." I don't, either, never having subscribed to a blog. Who knows, maybe this post will just show up in your e-mail in-box. Let me know.

And now--ta dum!--some pictures....

Well, maybe I don't exist. The pictures I thought I uploaded don't seem to be here, and I got some sort of "securityToken" saying the action I tried to take couldn't be accomplished. I'll try again, but don't hold your breath!

Thursday, November 15, 2007

Beginning to Blog

November 15, 2007 - This seems like a very odd thing for me to be doing. I've tried to avoid blogs, even friends' blogs, even the excellent TomDispatch blog which still arrives by e-mail. Seems to me they just suck up time, and how much time does any of us really have?

But here I am, with vocal folds paralyzed by tumors caused by metastatic stomach cancer, pretty much unable to speak except in a very soft, very whispery, very low voice, and pretty much unable to be heard except in very quiet places, trying to figure out how to communicate with people. So I've added text-messaging on my cell phone and instant messaging on my computer to the e-mail I've done for years. And since I am, after all, a writer--why not try a blog? The trick--since virtually all of my friends and family are over the age of 15--is to get the technically naive and even the technophobes to learn these new tricks.

So I'm using this evening, recovering from my latest chemo infusion, to start a blog. For now, no bells or whistles (or photos, either). But eventually.... who knows what you may find here!

And for those of you who may be curious, the next CT scan is after Thanksgiving, November 29. I'm pretty sure this chemo is working, since I can breathe a lot better than I could before it started. But I'll report the results here.