Friday, February 27, 2009

I've complained about this before....

... but really, can't writers think of another way to kill off their characters? In the past week, I've read books in which three characters died of cancer (two breasts and a brain) and seen movies or TV shows in which two more did (another brain and a pancreas). Yes, cancer is the second leading cause of death in the US, after heart attacks, but it's interesting that lung cancer leads in deaths, and you almost never read about a character dying of that. While breast cancer is the second leading cause of cancer death among women, an awful lot of women survive it. Not in books, though -- no one beats it. It's a chance to get rid of interesting secondary characters who might otherwise take over the story.
The second leading cause of cancer death for men is prostate, but when is the last time you read of a character dying of it? No, brain cancer is the preferred killer, even though chances of getting it are actually small.
We have a tradition when we watch a show on TV. As soon as the doctor bows his head slightly and says, "I'm sorry, Mrs. Jones.... It's cancer," we laugh maniacally and throw popcorn at the screen. It helps.

Wednesday, February 25, 2009


Monday as I went in for chemo, I passed a woman in the radiology waiting room, just downstairs from the infusion room. She was clearly accompanying someone who was in for radiation. How could I tell? Easy. She'd been working on the same scarf with big needles and fun fur for three weeks each time I came in for chemo and she hadn't made much progress. Radiation only takes a few minutes, and that department is so prompt that if you're the patient there's no point in taking your knitting. So she was a caregiver. We've progressed to talking about scarves in general and the problems with fun fur in particular, but I haven't asked her about who she's waiting for or the cancer side of things.
Upstairs, I always look around to see if anyone is passing the hours of chemo with needlework. Because chemo takes so much longer than radiation, there's time for big, complex projects. On the other hand, chemo brain and nausea take their toll, so that I haven't seen anyone making, for example, a spiderweb-fine lace shawl while hooked up to an IV.
Monday, besides me, there was only the woman who makes caps for preemies, this time working on a lovely pink one. I haven't seem the woman who does the counted cross stitch for a while, and the caregiver who knitted socks as she sat by her husband has been gone since he finished his treatment. I've wondered if she insisted that he have just one more dose while she bound off the cuffs.
Strangely enough, no one makes chemo caps in the infusion room, though there's a basket full of them. Occasionally someone will check them out, but usually no one takes one.
No wonder. I wish that people who decide to do something nice for those poor, poor women who are suffering so would focus on quality instead of quantity. Instead of making fifteen chemo caps out of the thickest possible yarn and easiest stitch, it would be nice if they made one that anyone would actually want to wear. This mini-tirade is set off by the cap that was on top of the pile on Monday. Sludge-colored, made of the harshest acrylic, it would be enough to send an already-depressed cancer patient into a tailspin.
So am I being impossibly ungrateful? Maybe.
I just want it known that what I'm knitting in the picture above is going to be a chemo cap. It's out of a wonderfully soft wool, and the design is classy. And I'll put it on top of the pile.

Friday, February 20, 2009

Happy Anniversary

It's been a year.

A year ago today we sat in Dr. Ormont's office, with my usual list of a dozen questions, mostly wondering if a few lifestyle changes would take care of the pain and nausea I'd been experiencing since October. Jerry says he knew something was wrong the minute Ormont walked in, because usually he has a smile but now he was pale and grim. He gave us the news and immediately set us up with appointments with an oncologist and a surgeon at Dartmouth-Hitchcock in Lebanon, NH. And the process of dealing with whatever was wrong now became focused onto dealing with pancreatic cancer and moved into high gear.

Over the year, I've had two kinds of chemotherapy, one lasting from March through June, and the other beginning in September and continuing indefinitely. They put in the port in March. I had daily radiation from mid-May through mid-June. I had an ERCP and stent change in February, July, and September. The unsuccessful Whipple procedure was at the beginning of August (six days in the hospital in Lebanon), and the surgery for the perforated ulcer was in December (ten days in the hospital in Keene). It's been quite a year.

So with all of that, what do we have to celebrate?

I've beaten the odds. Supposedly one out of four makes it through the first year, though the more I read the less I trust the statistics. After all, these numbers include a lot of people in their eighties, others who started out in bad health, those who didn't get the good care I have, and maybe some who are just not lucky. (Though I never gamble, because when I've tried I've never won so much as a Bingo game.)

When I look back over the year, though, it isn't the medical procedures that spring to mind. What I think of are the wonderful people: always and forever, my family. The calls from Max and Cinda that keep me anchored. The brothers and sisters and in-laws who keep in touch. The people in the groups I belong to: Westmoreland Town Band, The Writers' Group, The Top of the Hill Friends, my yoga class. Neighbors. The woman whose face I recognized, but who I don't think I've ever spoken with who stopped me at the supermarket to tell me that she was praying for me.

And Jerry, who gave me four chocolate truffles today to celebrate. Without him, no matter how long I lived, there wouldn't be much to celebrate.

In Follies, Sondheim said it best:

I've run the gamut, A to Z.
Three cheers and dammit, C'est la vie.
I got through all of last year --
And I'm here.

Wednesday, February 18, 2009

Green Bananas, the book

It's no surprise to anyone who knows me that I'm writing a book. I'm always writing a book (though almost never finishing one). Over the years, I've tried SF a couple of times, mysteries ditto, at least one gawdawful romance, and three non-fiction, the only ones that got published.

So it seems a natural progression to use my experiences over the past year as the basis for a book on what it's like to have pancreatic cancer. (You can tell already that it's a real upper.) I don't see it as following chronological order, because, so far at least, there's been no real story: no building up of tension to an exciting climax. Thank heavens.

It's been more like what the flight attendant tells you as the plane gets ready to take off. In case of a change of pressure, air masks will drop down from the overhead compartment. Put yours on and breathe normally. It's been a year of trying to breathe normally, which doesn't make for a lot of dramatic tension. On the other hand, I've had amusing, touching, annoying, and scary experiences, all seen through the lens of the cancer.

I enjoy writing about them in the blog, and now I'm enjoying expanding what I think are some of the best into a series of short essays, a combination of memoir, how-to, and meditations.

There might even be an audience out there. If it's true that one person out of four is touched by cancer, maybe a quarter of the population would buy the book? Even more, because with luck they'd all buy it for each other. When I sell the movie rights can I insist that Meryl Streep plays me? But I'm getting ahead of myself.

It would help me a lot to know what sort of subjects you'd like to see in such a book. Are there blog entries that stuck in your mind? (Please say yes.) Are there things I haven't touched on that you've wondered about? Have I said things you totally disagree with?

I promise to put your name in the acknowledgments -- or, if you prefer, I promise never to tell anyone.

Saturday, February 14, 2009

delicious and healthy, too

The original challenge, for another friend with cancer and for me, was to create a dinner including as much turmeric as possible, but these ideas expand. We ended up trying to make a meal with as many of the "foods to fight cancer" as the book of the same name (by Richard Beliveau and Denis Gingras) recommended: cabbage, garlic and onions, soy, turmeric,green tea, berries, omega-3 fats, tomatoes, citrus, red wine, and chocolate.

Her contribution was Tofu Vegetable Hot Pot

1 cup thinly sliced shallots
1 T matchstick-cut ginger
1 t turmeric
1 serrano chili, thinly sliced (seeds removed, if desired, for less heat)
1 garlic clove, minced
1 1/2 c shredded green cabbage
1 c sliced shiitaki mushroom caps
1/2 c thinly sliced carrots
1 c water or chicken broth
14-oz can light coconut milk
1 lb firm tofu, in 1" cubes
2 medium tomatoes, in 1" wedges
1/2 c torn fresh basil leaves
1/4 c sliced green onions
4 lime wedges

In a large saucepan, heat 1 T oil, add shallots, saute for 2 min. Add ginger, turmeric, chili and garlic, saute, stirring 1 minute. Add cabbage, mushrooms, carrot, cook for 2 minutes.
Stir in the liquids, bring to boil. Add tofu, reduce heat, and simmer for 5 minutes. Add tomatoes and simmer 3 minutes. Add basil and green onions, serve immediately, garnished with lime wedges. Serves 4.

Mine was Moroccan Slaw (adapted) from Lorna Sass's Short-cut Vegetarian:

1-2 carrots, peeled and shredded
about 1/8 to 1/4 cabbage, shredded
1/2 onion, sliced very thin
1/2 red pepper, sliced very thin or shredded

Sauce of
3 T roasted garlic oil or olive oil plus a clove of garlic, minced
3 T fresh lemon juice
chopped cilantro
1 t paprika
1/4 t turmeric
1/2 t cumin
salt and pepper to taste
you can add 1/2 c raisins or currants [though I have friends who swear I sneak raisins into everything . Not really true. Sometimes I use dried cranberries.]
Mix everything.

With these, we had brown and wild rice cooked in home-made chicken broth. We ended with Jerry's fruit salad with a yogurt/cinnamon/maple syrup topping, and, on the side, dark chocolates. Drinks were organic red wine and green tea.

Healthy doesn't taste much better than that.

Wednesday, February 11, 2009


The bad news is that my cancer marker, the CA19-9 has gone up, for the first time since last summer, from 32 (normal) to 63. This is not something to worry about-- yet -- for several reasons. First of all, the range for the marker goes up into the hundreds or maybe thousands (there are a couple of ways of computing it), so mine is still low. Second, a random infection could cause it to rise, and while I don't think I've had a random infection in the past couple of weeks, my white blood count has been low, so maybe I did and didn't notice. These things happen.
Then there are are things we'd rather not think about, that the Gemcitabine has stopped working effectively or that the cancer has gathered its forces for another assault; but we're not thinking about those. That's partly because we have to wait and see if the rise in numbers is a trend or a blip, partly because the CA19-9 is just indicative and has to be backed up by a CAT scan or other tests, and partly because I don't wanna think about it. Okay?
However, this has an impact on our plans for next month. We started planning a week's vacation on the Mayan Riviera last fall when it appeared that winter was actually going to come to NH, all with the assumption that my health would make travel possible.
When we checked with Dr. Nickerson, before the marker results came out, he saw no reason we shouldn't go, so we changed my chemo around so that I'd be at the top of my form for March 13-20. I was going to go for a whole month without chemo, but with the marker up, that didn't seem like such a good idea.
The latest plan is that I'll have a week off, two weeks on, and then two weeks off. It seems like a reasonable compromise, but it took a couple of hours (2:30-4:30 am) the other night to work it out. Dr. Nickerson is agreeable, so everything is back on track. Yay!

Tuesday, February 10, 2009

Weight, weight, don't tell me

I recently wrote a piece for the cancer book I'm working on about what losing weight means to a cancer patient and how frustrating it is to be unintentionally skinny in American culture. Because of this, I've been more conscious than usual of my own weight, and I got rather nervous when I suddenly seemed to be losing. Down a pound. Up half a pound. Down two. And then, yesterday, I was down three and a half in one day, after a weekend of eating very well.
This couldn't be. I spent some time worrying, then decided that even cancer couldn't do that to me; if it could, someone would figure out a way to bottle it and sell it over the internet. Can you imagine the advertising?
I got Jerry to try the scales, and he'd lost, too.
Light finally dawned. I bought a new battery for the scale, and lo and behold! today my weight is back to normal.
Not all problems are major. Or even problems.

Friday, February 6, 2009

Ruth Bader Ginsburg joins the community

She doesn't know yet that she's joined a community of about 40,000; in fact, as I remember the surgery and its aftermath, she doesn't know much of anything at this point.
The chatter on the pancreatic cancer discussion boards shows our biases and our specialized knowledge. We are interested in the technical details and discuss:

Why did she choose Sloan-Kettering? Johns Hopkins is closer and is one of the two top pc facilities in the US. (Maybe she has family in NY? Maybe her colon cancer was treated at Sloan-Kettering?)(But on the other hand, some posters recognize the name of her surgeon and assure us that he's tops.)

Did she have a Whipple or a distal? (And everyone who had either the Whipple or the alternate procedure chimes in to discuss the implications.)

Is a week in the hospital reasonable? (General consensus is probably not, but on the other hand she can probably get skilled nursing at home, and who wouldn't rather recover at home?) What about post-hospital recovery time? (Stories from people who went back to work two weeks post-surgery and from others who never quite got their oomph back.)

And many, many wistful posts about her early diagnosis. No one begrudges her the top-quality medical care that gave her a CAT scan as part of her post-colon cancer checkup, but all of us in the pc community wish that our cancers had been discovered in a routine workup, before the symptoms started, before the statistics got so bad.

Coincidentally, another bill has been introduced in Congress by someone whose husband died of pc last year. And at the same time the Senate is about to take up a bill that would add money for pc research (not much compared to what Wall Street and the car manufacturers are getting, but some, at least).

I've asked you before to go to the site and sign the petition. Now is a good time to do it again, while Bader Ginsburg is in the public consciousness and the representatives might realize that even the powerful are not immune to this disease.


Wednesday, February 4, 2009

I got shoes

A problem I've had for the past year has been that the brace which keeps my left foot in order is too bulky to fit most shoes, and especially boots. The only shoes I have are sneakers with mesh in the sides, which has been my excuse for not walking in snow or when it's too cold. And that means most of this winter.
But the other day I went into a shoe store, saw a pair of boots made with a kind of knit fabric, tried them on, they fit, and I walked out of the store, for the first time in my life with the first pair I'd tried on. To make it even better, they were on sale.
And now I can walk outside again. Fate decided to encourage me in this, because yesterday morning we saw three deer from the herd that hangs out in the neighborhood eating the cracked corn neighbors put out for the wild turkeys.
(And I forgot to mention that my blood counts are all back to normal, and Dr. Nickerson continues to remind me that I'm doing extremely well.)
Life is good.

Sunday, February 1, 2009

Miles is four!

And I'm a bit disgruntled because a)I seem to have lost the ability to upload pictures so you can't see how absolutely beautiful, charming, and witty he is, and b)thanks to two weeks of low blood counts, we decided that going to a birthday party with a bunch of (possibly) germy kids wasn't a good idea. So we're celebrating long distance.
Jerry did give him the traditional serenade (french horn) and he reacted with all the enthusiasm of other relatives getting the traditional serenade. That is, politely.

The low blood counts are to be expected. What's annoying is that there isn't much I can to to change them. It's a lot harder to just wait something out than to Do Something about it.

I'm rereading Anna Karenina. One of the main characters is middle-aged, sallow, no longer beautiful, worn-out.... And then it turns out she's 35. Life is a lot better than it was, even for the upper classes, in tsarist Russia.