Update on my procedure

The wonders of technology. Using the brand-new iphone, Jerry took the picture of me getting prepped. If he'd waited a minute he could have gotten one of me grimacing as the nurse tried to find a vein for the IV. She finally did, so I wasn't conscious while they sent the little camera down my gullet (more wonders of technology). I won't try to reproduce the resulting pictures, because all the squishy bits inside look ... squishy. However, Dr. Krishna got a great shot of the ulcer, a gray squishy -- well, you get the idea. And it explains why I've had periods of pain and nausea. The report they gave us describes the ulcer as "large and deep." Yuck.

What happens next could be explained better with a tree diagram than in prose. Dr. K sent tissue off for biopsy. Unfortunately it will take a week or so to get the results back. He thinks that this ulcer is related to the one I had in December, and if so it probably isn't cancerous, because that one wasn't. Obviously, if it should turn out to be, the tree diagram would take us in directions I don't even want to think about, though at the moment I'm hanging onto my optimism. Meanwhile we wait.

But, meanwhile, there's the ulcer itself. I have been taking Pepcid since December. This is a med that has been superseded by the new proton-pump inhibitors, Nexium and Prilosec, which unfortunately I'm allergic to. Dr. K says I need something stronger than Pepcid, so he's prescribed Sucralfate and Pantoprazole, though it may turn out that I'm also allergic to the latter. He told me to wait until Monday to start taking it just in case. Hey, neither of us wants the weekend interrupted.

So stay tuned.

Quick Medical Update

I'm still feeling good, most of the time, mostly, but as I've mentioned I've had some bouts of stomach pain and queasiness over the past few weeks, and Dr. Nickerson decided it was worth my having an endoscopic ultrasound, so that is scheduled for Friday. He mentioned something about my perhaps having an ulcer, and after December's perforated ulcer no one wants to take chances.

Chemo today, recover from chemo tomorrow, EUS on Friday -- life is just full of interesting experiences.

Added to that, my CA19-9 tumor marker has gone up from 75 last month to 93 this month. The good news is that it's still down from the 105 in March. And, in any case, these are just blips. The CA19-9 can go up or down hundreds of points, so twenty is, as the nurse told me, "stable."

So it isn't great news, but it isn't dire, either.

Learning Curves

Okay, it ended up six tries to get the second sleeve to look anything like the first.

And while everyone assures me that the iphone is "intuitive" I'm still learning. The gadget itself is intuitive, but somehow the information the computer gives me on how to download things seems to be in a new language. Luckily, both Max and Luther were here yesterday to help, and I now have Koi Pond and Scrabble apps downloaded plus a beginning on some music. Plus I have voice mail, email, and the weather for Marlborough. So I'm getting there.

But I think it's funny that both the fanciest of new technology and the simplest of the old are both challenging my brain with new ways of thinking. At this rate, I'll never have to worry about Alzheimer's.

5/21/43 -- Joy

About 15 months ago, whenever I rode the bike at the Y and it asked my age, I wondered if I would ever be able to punch in 65. And now it's 15 months later, and yesterday, a day early so I could post the picture today, I was able to punch in that my age is 66.

I am thankful and joyful.

Digression into knitting

Knitting: I'm working on a sweater for myself, a cotton/silk/bamboo blend in a muted shade of teal. The pattern is interesting because you make the sweater top down, and once you have the sleeve holes you pick up stitches and then knit the sleeves in, also top down. It involves a lot of short rows and counting, which should have warned me right at the beginning, but I was entranced with the idea. No seams to sew up at the end. And you can try it on as you go, presumably ending up with something that fits.

First thing was that I discovered that if you have three parts of the sweater (two sleeves and a body) all in progress, you need a lot of needles. I began to feel as though I was knitting a bagpipe. Then I discovered that if you want to try it on, you need to slip the stitches off the needles onto waste yarn or you'll impale yourself.

And then I got to the second sleeve. The first went so smoothly that I was already planning several more sweaters made the same way.

I am now on my fourth iteration of the second sleeve. How many dumb mistakes can I make with short rows? The latest was a real beginner's goof. I got through the short rows and on the next row started back in on the round, and somehow went backwards. Naturally it took a while to notice that the pattern wasn't working, and then I wasn't able to frog back just to the place where I screwed up, so it's back to the beginning.

In Liberian English you don't have to take responsibility for this kind of thing. You just say, "De ting broke," meaning I didn't do it. It must have been some cosmic error on Someone's part. I just wish Someone would fix it.

Two remembrances

This week has been rough, in a way, because we went to two gatherings to remember people who had died. One was for someone who had been Jerry's boss years ago. Paul was not religious, so his family decided on an open house at his home on a local pond, with no ceremony. We gathered, enjoyed the sunshine and view of the pond, ate, and in some cases reminisced about Paul.

The other was quite a contrast, a Catholic burial service for the son of a neighbor. We'd been to the viewing several weeks ago. Around here it's a tradition to wait for interment until the ground thaws, and obits explain through the winter that "spring burial" will take place at such-and-such a cemetery. So this was a spring burial, a very traditional one in the sense that the casket was brought to the decently-astroturfed hole. Someone placed two Yankees baseball caps on the casket (this broke tradition because we're all Red Sox fans around here), the priest led us in prayers, and Joe's mother placed a bouquet of 44 red roses, one for each year of his life, on the casket. I did okay until then, but was overcome for a bit. I can't help taking this kind of thing personally.

Afterward, we went to her house for food and sociability, and I found myself remembering a class on death and dying I took at the U. back when I was going to be a gerontologist. I did a term paper on the food served at Mormon funerals, and I developed a theory that you can tell the joyousness of the occasion by the height of the cake: wedding cakes have several tiers, birthday cakes a couple of layers, and the cakes that used to be served at LDS funerals were always sheet cakes.

Food is always a cultural marker. What you eat, when you eat it, what you say while you're eating it tells about the culture, especially when it's for a ritual occasion.

The food at both the gatherings, unlike the ceremony or lack of it, was similar: soft rolls with lobster salad, large-sized shrimps and tartar sauce, various kinds of coleslaw and potato salad, a platter of cheeses and meats to go with the artisan-style breads. And neither featured cake of any kind.

I have two conclusions from this, first that region trumps religion. The two ceremonial meals in NH resembled each other much more than either resembled what I remember of the Utah Mormon funeral feasts. Or is my Mormon information just out of date?

The second conclusion is that it is much easier for me to put on my anthropologist hat than to think too deeply or personally about these ceremonies.

Band Concert update

We played well, considering.
And the audience was great. They saw this as an interactive performance.
Carlson: Good evening, ladies and gentlemen. We're really happy to be here.
Voice from Audience: And we're happy you're here.
Another: Except that it's damn cold in here.
Carlson (desperately): Well, we'll try and warm things up with a medley from Chicago.
Later, after the medley was well received and someone had to be stopped from marching around the room to The Olympic Spirit, Carlson introduced the next piece: Some of you may be old enough to remember a group called the Tijuana Brass.
Voice from Audience: Oooh, yes, I remember them. Do you remember them?
Carlson: Well, I bet you haven't heard them recently.
Voice: Oh, yes we have. They were here last week.
Pause, while Carlson admitted himself defeated, and then we played that medley.
Afterwards, the voice from the audience said, "You know, they were almost as good as the real ones."
The BSO doesn't get that kind of response.

Band Concert Tonight

The first concert of the summer season is traditionally at the same nursing home each year, and every year it's a disaster, rather like the horrible dress rehearsal that promises a great opening night. We gather in the dining room, and the audience is wheeled in to watch and comment.

This is always the concert where the snare drum doesn't bother to watch the conductor, the saxes go wandering off in their own direction, and the trumpets forget that someone has to play first part. The trombones, of course, play brilliantly.

Actually, we generally do play better than anyone else, but it has less to do with our talent than with our sitting next to the door. Everyone else in the band simmers in the nursing home heat, while we get a cool breeze.

But you couldn't ask for a happier audience. When they know the tune, they sing along. In fact, they sing along sometimes when they don't.

We all have our favorite stories from nursing home gigs. There was the Alzheimer's patient who had once played trumpet with the Boston Symphony. Whenever we started to play, his face lit up and he put his hands together to blow into the space between his thumbs. He was usually on key, too.

Then there was the other man who spent a whole concert trying to run through the clarinet section. We couldn't decide if he was trying to escape or if he was just a music lover.

Last summer, between getting ready for surgery, having surgery, recovering from surgery, I had to skip the season. This year I'm looking forward to it.

I read it in a book

In order to sell a book to an agent or publisher, you have to show them how your book is different and better than anything already out there, which means you have to at least look at a lot of books on the subject. Let me tell you, several days straight of cancer memoirs is ... depressing.

There are lots of breast cancer memoirs -- and my advice to anyone just diagnosed with breast cancer is don't read any of them written before 2000, because the field has changed so much that you probably don't have to worry (or read) about uncontrollable projectile vomiting.

Then there are the very few written by men, the "I've got the balls to deal with this" school of writing. Cf Lance Armstrong.

And a few written by people with rare, nasty cancers. I actually enjoyed parts of Bald in the Land of Big Hair, by Joni Rodgers. From this:

A sample of doctor-speak: Testing indicates clankankorous miss moss pooniak slar.... Blah reeh moo noo spahsh mlork malignant planurtion. Woop woop dee jarmud oncologist immediately plinka meesh meesh chemotherapy....

And possible titles for books on cancer:

Chicken Soup for the Condemned to Hell Soul

Don't Sweat the Small Stuff -- and it's all Small Stuff Except for Cancer, Which is Godzilla

The Illustrated Encyclopedia of Doom and Despair

Death for Dummies....

Well, I thought it was funny. You should see what the depressing stuff looks like.

Awkward conversation

Last night at band rehearsal, as we prepared for our next week's gig at a local nursing home, one of the other trombones said, "Do you realize, one of the patients there is famous -- she's 113 years old, the third oldest person in the world. And she's still got her smarts."

That started a conversation between the two other trombones.
"One hundred thirteen. I can't imagine being that old."
"If I thought I was going to live that long, I'd sure change my lifestyle now."
"...Or twenty years ago," added the younger one. "Sometimes I think I won't even make it to 70."

I just kept quiet and smiled encouragingly. What could I say? "Hey, I'm really excited these days because it looks like I'll actually see 66."

One hundred thirteen would have been a stretch before. No one ever put a guarantee in writing that I would live a long life, but I always assumed that I'd last into my nineties, and of course keep my smarts and physical health. My parents came close to that age; Jerry's died very young (41 and 50), so I think we both assumed that I would outlive him.

I always loved the Greek myth in which the elderly couple so impressed a god with the beauty of their relationship that he turned them instantly and together into trees so that their relationship and lives could continue. I hate to think of either of us without the other.

Not being able to look very far into the future is something you never get used to. How far do I dare to look? In fantasies, maybe a couple of years more. More realistically? Can I believe that I'll still be alive at the end of this summer? We make firm plans through our trip to Utah at the end of July (but buy trip insurance). I certainly expect to play the nursing home gig next week.

Meanwhile, I keep working on living in the eternal now. I could get good at it, I think. If I just had enough time.

More about the book

When people who don't know my situation ask what I do now that I'm retired, I'm not quite sure what to say. Frankly, staying healthy takes up a lot of my time, but if I say, "Well, I work out three times a week, and walk as much as I can, and have a yoga class," it sounds as though I'm a fitness fanatic. An unsuccessful one. No abs of steel here.

If I say that I'm writing a book, the next question is "What's it about?" and if I say, "It's a memoir of my first year of pancreatic cancer," I can just imagine the reactions, but I never say that because I don't want to go into the whole thing with people who are just acquaintances.

However, I thought I'd bring you up to date about the book. It will consist of a series of short pieces, many taken from this blog and expanded. Some will be about what I've been through, others semi-technical explanations of parts of treatment, others suggestions for caregivers and concerned friends and relatives. I have six finished. The titles are Cancer for Dummies, Hair Today, Port Authority, Prayer, Weighty Matters, and What to Say. Several more are in various stages of working and reworking: Scansion, Prologue, Zapped, Diagnosis and Testing, Community Happens, The People You Meet, The Stages.

I've had suggestions that pieces on how to stay optimistic and how one deals with a suddenly foreshortened future could be interesting/useful.

Any other suggestions?

Meanwhile, when people ask me what I'm doing these days, I usually tell them I'm knitting (in progress right now, two chemo caps not for me but for charity, and a summer sweater out of a bamboo/silk/cotton blend, definitely for me).

Gemcitabine side effects

I've been feeling, basically, crappy for the day or two following chemo: I run a bit of a fever, have a headache and muscle aches, and have no desire to do anything except lie on the couch with the cat on my stomach listening to music. Then the next day I'm fine.
It's only taken a couple of months for me to figure out that these spells might have something to do with the chemo. For the past six or eight months I had no side effects, so they dropped off the radar and I assumed that they would continue to. But there must be some cumulative effect.
Now I know what others on Gemzar complain about. If you look at the side effects listed below, I'm actually in pretty good shape. Some, like the low blood cell levels of one sort or another, I only have occasionally. Others, like the fever and aches, are no fun, but as long as I know that they're bounded and that they're just a result of the chemo and not a sudden dropoff in my health, I can stand them. I'll just have to figure out how to work around the off days.

From Oncolink
Common Side Effects


Decrease in the number of white blood cells (neutropenia) I've had this
Puts you at risk of infection.
What to do: Call your doctor or nurse for a fever of 100.4 F or greater. Avoid people with the flu or colds. When working in your yard, wear protective clothing including long pants and gloves. Do not handle pet waste. Keep all cuts or scratches clean. Shower or bath daily and refer to Chemotherapy and You (NCI, 1997) for mouth care. Do not cut cuticles or ingrown nails. You may wear nail polish but not fake nails. Ask your doctor or nurse before scheduling dental appointments or procedures. Ask you doctor or nurse before you or a family member has any vaccinations.

Decrease in red blood cells (anemia)
Causes loss of energy.
What to do: Call your doctor or nurse if you feel more tired than usual or short of breath while doing normal activities.

Decrease in platelets (thrombocytopenia)I've had this one, too.
Puts you at risk for bruising and bleeding.
What to do: Call your doctor or nurse if you notice any unusual bruising or bleeding. Do not floss or use toothpicks. Use a soft-bristle toothbrush or cotton swab. Ask your doctor or nurse before scheduling dental appointments or procedures. Use an electric razor to avoid cuts. Do not use medication containing aspirin or ibuprofen without asking your doctor or nurse.

Nausea and Vomiting No vomiting (except when my stent was blocked; but sometimes I get nausea or queasiness.
What to do: Take your anti-nausea medications as prescribed. Try to drink 6-8 glasses of fluid a day. Avoid eating fatty foods, large meals, and acidic foods (e.g. tomatoes, lemons, oranges, grapefruits) and spicy or hot foods when you feel nauseated. Call your doctor or nurse if you are unable to keep fluids down for more than 12 hours or if you feel lightheaded or dizzy at any time.

Decreased appetite I get this one the day or two after chemo.
What to do: Try to eat five or six small meals or snacks throughout the day. If you are not eating enough, nutritional supplements may help. Ask your nurse for a copy of the Eating Hints booklet (NCI, 1995) and about nutritional counseling services.

Diarrhea Nope.
What to do: Call you doctor or nurse if you experience an increase in the number of stools, an increase in the volume of stool or if the stool becomes more liquid. Take the antidiarrheal medication your doctor has prescribed. Increase your fluid intake by drinking more liquids than usual (e.g. sport drinks, broth, gelatin, popsicles, soups). Eat bland foods such as bananas, rice, unsweetened applesauce, toast, cereal, and potatoes. If the diarrhea continues, contact your doctor or nurse again.

Effect on skin Not so far.
What to do:Call your doctor or nurse if you develop a rash, especially if it is itchy. Your doctor may prescribe a cream or ointment.

Fever Yes, the past few rounds of chemo, but not above 100.4 (Of course, my usual temp is 97.4. Does this make a difference?)
Gemcitabine can cause a low-grade fever the night after your treatment and for 2-3 days after treatment.
What to do:Call your doctor or nurse if you have a fever greater than 100.4F or chills.

Flu-like symptoms Yes.
What to do: Call your doctor or nurse if you have a fever greater than 100.4F, weakness, body aches, decrease appetite or headache.


Uncommon Side Effects: We'll skip those, since I don't have any problems with lungs, liver, kidneys, or any of the other horrors they mention except for thinning hair. Damn it.