Wednesday, January 28, 2009

Under the weather

Sometimes the old-fashioned phrases make more sense than the modern ones. I could say that I'm feeling crappy today, but I'm not, exactly. I have a bit of the stomach palaver I get occasionally, a bit of just not feeling up to par. Nothing major. The phrase "under the weather" fits perfectly, especially because of the storm outside. Even if I felt great the prospect of anything from six to twenty-two inches of snow would discourage me from going out and doing stuff (not to mention the sleet and freezing rain that might happen somewhere in the middle of it all).
Today is definitely a day to lie on the couch with a cat on my lap and a cup of tea near at hand, reading either one of the books that friends have lent me or a book that Luther loaded into my new Kindle, maybe doing some knitting, but in any case being very glad that I'm inside and don't have to go out.
And I wish you a peaceful day, too.

Saturday, January 24, 2009

The Rite

I don't like going to viewings.
I don't like going to viewings of young people.
And especially, I don't like going to viewings of people who died of cancer.
But, supported by Jerry and my closest Marlborough friends, that's what I did last evening.

I didn't know Joe very well. He'd grown up and moved away not too long after we'd moved here, and when he moved back last year so that his mother and sister could care for him, most of our brief conversations consisted of words of encouragement and questions about each other's treatments.
So going to the funeral home last night made me think less about his life and death than my own.

There are the morbid logistics: if Jerry puts me in an open casket, I swear I'll rise out of it and chase him screaming around the room.
The quirky: So where could they fit the Westmoreland Town Band to play Wonderful World in these little rooms?
The wistful: but here are all these people and I won't have a chance to share a last joke or expression of love.
And then I take refuge in denial: I'm here, there's no point in getting ahead of myself, and besides, the rite is for those who are left.

For me, it will be beside the point.

Wednesday, January 21, 2009

Inauguration -- and two Maxes

When our son Max was born in Liberia, we didn't expect any problems. We didn't have any, either, until the time came for us to come back to the States, when the official at the Embassy refused to issue him a passport on the basis that I might be his mother, but how could we prove that Jerry was his father? Jerry protested that he had been there at both ends of the process that produced Max, but the official was unimpressed.
"Where is your marriage certificate?" (Which come to think of it suggests real naivete on his part.) Our marriage certificate was back in Salt Lake City, safely in storage.
Jerry, in desperation, asked, "Couldn't you just give him a bastard's passport?" but the official sniffed, "We don't do things like that."
Finally he accepted the name change in my passport as proof that we were married and Max was legitimate. He issued us the passport, but he had the last word. "You realize that because the child was born overseas he will never be able to become president."
This didn't bother us, and doesn't seem to have bothered Max, either.

As I watched the inauguration, though, I thought about it. If he had decided to go into politics, he would not have been able to become president, because he was African-American.

But mostly I thought about our great-nephew, also Max, who, though born here, is racially African-American. He is three years old. Maybe he'll be the president by the time he is son Max's age. And no one will find race or birthplace even worth mentioning.

Monday, January 19, 2009


Suddenly, finally, it's back. Saturday we went down to the Northampton area to look at a house with Max, Anya, and Miles, and it was fun. While I was tired by the time we got home, the trip wasn't exhausting. Yesterday I had enough energy to do a few things like baking, writing, and even some housework. And this morning I woke up thinking of all the things I want to do today, without planning down time in between them.
Life is no longer what happens between naps, and this is a big change. I hadn't realized how rundown I was until now, when I'm not.
When Jerry had his heart surgery I spent a lot of time scolding him for expecting to be back to normal immediately after major surgery. He has been wonderful about not throwing my words back in my face this last month. In fact, I think he's taking better care of me than I ever did of him. But that's another entry.

Thursday, January 15, 2009

Checkout with the surgeon

When did the people who go up to their elbows in your insides get so young? It hadn't really struck me in the hospital because I was so groggy, but on my final meeting with one of the surgeons who operated on the perforated ulcer, I suddenly thought, "This man could be my son" (though I prefer the one I have). I try to think of it as his having quick reflexes and good eye-hand coordination rather than impulsiveness and lack of experience.
In any case, since he and his partner did such a great job I shouldn't quibble about age.
Doctors get a kind of smugness shining through their professional veneer when they got it right, and this doctor radiated smug. He said that as long as I keep taking Pepsid, I can eat or drink anything, that I can do anything (I tried to get him to ban pilates, but he refused), and that a perforated ulcer, or any kind of ulcer, is unlikely, unless the cancer spreads, in which case it's a different kind of problem.
So I went to band rehearsal the next night, and if 90% of everything is just showing up, I did my 90%. And it was fun.

Tuesday, January 13, 2009

Food, Glorious Food

When I was in the hospital and they finally let me eat jello, I was amazed at the subtleties in flavor and texture in what I'd always thought was the blandest of foods. But, oh, the delicate shadings as the sun shone through the jello, the wonderful feeling of the slippery spoonful sliding down my throat.
I quickly went far beyond that, back to my normal sneering at America's Comfort Food. It just goes to show you how people are never satisfied, because less than a week after jello was the high point of cuisine, I was complaining about the Trailer Trash Diet and already starting to cheat on it. Though I preferred to call it Cautious Creative Experimentation.
I think garlic was the first I tried. How can garlic be bad for you? It's right up there with yogurt as the ultimate health food. In fact, a nurse told me that her Italian mother had always said that garlic is not only good for physical health but also calms the nerves. It calmed mine and didn't seem to hurt me physically, either.
Next came the brownies that a friend sent. What could be wrong with brownies? Except for the nuts, which were a definite no-no. But my stomach said yes-yes.
Last night I reached the pinnacle of good health: I ate an entire meal without worrying about The Diet. We had pasta with veggies and mint pesto, which reminded me of summer, and Jerry made a salad with avocado, oranges, and onions. Delicious.
Food is good. Life is good.

Friday, January 9, 2009

Another bit of publicity

Sorry -- you'll have to copy and paste this link. I still don't know how to make it simpler.

Do I get angry about my situation? As I've said before, not really. If it would do some good, I'd get furious, but as things are, I have better places to put my energy.
Like getting angry at the people responsible for cutting the funding for research. I wouldn't wish this disease on anyone in the world, but I find myself wondering how they'd feel....

Thursday, January 8, 2009

Patrick Swayze interview

I only caught the bits of the Barbara Walters/Patrick Swayze interview that made it to Youtube this morning, but I checked the pancreatic cancer boards to see what others thought. Interesting.

First of all, everyone wanted to know all the technical details. So how are his mets doing? If he had to change types of chemo, what kind of reaction did he have to the first ones? And what is his CA19-9 marker right now? Finally someone pointed out that he's fighting the good fight and deserves his privacy.

Well, yes and no. Obviously, I'm all in favor of anyone with pc (or all of us, for that matter) having as good a life as possible without interruptions from paparazzi or people with morbid curiosity. On the other hand, those of us with pc really need a poster boy, and Swayze makes a great one, if only because he's survived so well so long.

I was struck by a couple of things about the way he's dealt with it. He's continued to work, and he's continued to smoke. I'm filled with admiration that he's been able to work through the disease and the chemo, though I'm thankful that I'd retired before mine happened. I think maybe there's a difference between being a high profile star who can probably take naps in his dressing room between shots and being a teacher with kids in and out all day. But that is not to put down his accomplishment -- and for him, being able to continue working has probably been in itself great therapy.

As for the smoking? In my humble opinion, he's out of his mind -- though the time he should have quit was years back. On the other hand, I quit years back. And maybe smoking 40 years ago put me where I am today, and maybe it didn't. However, at this point, does it make much difference? There's a lot of discussion on the pc boards about "minor sins." If someone is losing too much weight, is ice cream a bad solution, even if it has all that sugar, which feeds the cancer? What about painkillers? I read a post from someone with late-stage, very painful disease whose doctor didn't want him addicted to painkillers and wouldn't prescribe them. That's simply wrong.

I like Swayze's attitude of setting priorities and dealing with the big stuff first. And if, for him, that means continuing to smoke, well, more power to him.

Wednesday, January 7, 2009

Every day in every way.... Catch up on medical stuff

It's always a surprise to discover how long it takes to get back from surgery and a hospital stay. Someone told me once to count on a week's recovery for each day in the hospital, and by that measure I'm doing well. But I have lots of fatigue leading to long naps during the day and over nine hours of sleep at night.
The best thing is that I have only one more day of the Jesus Christ what we eat diet. I've been cheating: garlic has sneaked into the otherwise bland soups, whole wheat bread has taken the place of the white stuff, and I put strawberries in my last smoothie. No problems so far. In fact, my GI tract is behaving beautifully.
We went in to the rheumatologist on Monday even though the worst of the arthritic symptoms had gone, and he basically said that I probably had a virus, and that I was obviously about recovered from it. (I'm not, yet, but it's not as bad as it was.) In any case, he ruled out Fifth Disease and Rheumatoid Arthritis, pointing out that it would be really unfair if I'd developed the latter on top of everything else. I'd noticed.
So, like computer viruses, it apparently falls into the category of "they do that." Meanwhile, I take Tylenol as needed.
I'm back on track with the chemo now, and have the feeling that the extra week off was probably good for my system.
So enough of the medical stuff. My big question today is whether, after our saunas, I will actually roll in the fresh snow. And if you think that's a real question, you don't know me as well as you thought you did.

Saturday, January 3, 2009

Another year, another bump

I've been putting off trying to do something deep and meaningful about the New Year. So much of the hoo-haw seems, from my perspective, either irrelevant or superficial. Resolutions? Lose weight? Let me recommend the 10-day in the hospital fast and cleansing. Six pounds gone immediately.
Work more productively? Today's the first day I've felt good in almost three weeks. Productivity of any kind is still a long-term goal.

Mostly the resolution continues to be, as it has been, to Deal With It.
What it comes down to is that I don't know how long any predictions or resolutions are good for, and an annual rite like New Year's just reminds me of uncertainties.
I'd prefer to just keep going one day at a time, with my only change remembering to write 2009 on checks.

One thing that made me less than cheery the past few days is that I've had since Monday an annoying and painful bout of wandering arthritis: sharp pains and stiffness that move from joint to joint. It was bad enough that yesterday we went in to see an internist, who said that it could be reaction to yet another painkiller that I seem to be allergic to (in which case it's self-limiting and I just have to get through it), a virus of some sort (ditto), or something like rheumatoid arthritis triggered by inflammation. So Monday I see a rheumatologist. Jerry points out that we now have seen just about every specialist in the med. center except for neonatal and adolescent mental health. In the mean time I take Tylenol, saunas, and hot baths.

On the other hand, and because in spite of the tone of the above, life really is good, I got a call from the oncologist's office late yesterday afternoon. My tumor marker number, the CA19-9, which we've been tracking, has continued going down (good!) and is now at 32 -- in the normal range!!!! This means that whatever else is going on, the cancer is not doing anything at this time. And that's worth focusing on.