Interim update

Tuesday has been the only day this week that I didn't go to the med center. If I start the car at the top of Pleasant St. and fall asleep, I'm sure that fifteen minutes later I can wake up to find myself heading into the Dartmouth-Hitchcock parking lot. It's automatic.

Anyhow, Wednesday and Thursday were the big days, both involving lots of needle sticks. On Wednesday I was supposed to get blood drawn to prepare for Thursday's biopsy, and they couldn't take it from the port, which meant needles in the arm. My veins don't like being punched, so they slither away and develop hard edges so the needle can't penetrate. A nurse can only try twice before handing the job over to someone else.

It took six attempts, punctuated (so to speak) by my visit to Orthopedics, where they gave me a cortisone shot for my shoulder. Back to Oncology, where they finally got blood from me.

Visit in the afternoon to the GI doctor, who fortunately was unarmed, and who basically agreed with the oncologist that the pain I've felt under my ribs doesn't seem to be anything to be concerned about. Maybe a pulled muscle, maybe the cancer or scar tissue rubbing against a nerve, but definitely not anything showing up on the CAT scan.

Thursday was the biopsy. I went in and out of the CAT scanner while they figured out just where to take the samples from. Luckily the lump is right on the abdominal wall, very easy to get at. The person taking the samples said, "Now, don't worry. This needle is no bigger than the ones we use to take blood," and couldn't understand why I almost leaped off the gurney to run screaming through the halls.

However, the procedure itself was fairly easy (love that Lidocaine, even though it involved several injections).

Initial results: the pathologist couldn't find any evidence of cancer in the first draw. The second, according to the person taking the samples, showed pretty conclusively that the lump isn't a hemotoma, because they're sort of squishy, and this was so hard he said he had trouble getting the needle in (so that's what I was feeling) and that it seemed more like scar tissue than anything else. I find that very hopeful, though I'm not sure how I'd get a scar in my abdomen.

We wait for final results, next week. As I count back, I figure that this week I've had at least fifteen needles shoved into me. No wonder I have no interest in getting a tattoo, and even acupuncture doesn't sound attractive.

One other note: Jerry was with me for the first of the blood draws, and when the nurse said, "I have to go get the pink sticker," (which goes on the tube of blood to tell the lab just what to look for), he got a look of sheer horror on his face and asked me, "Did she say she was going to get the pig sticker?" A bit of hearing loss can add real interest to life.

Good news, not so good news, and more waiting around

We met with the oncologist yesterday and got the results of the CAT scan and the latest CA19-9 figures. The good news is that the pancreas seems about the same and there's no sign of cancer in the liver or lower lungs -- and this is very good news. Also there doesn't seem to be any sign of cancer under my ribs, where I've been aching. The doctor isn't sure what the pain is, but I'll mention it to the GI doctor at my appointment tomorrow, and maybe he'll have an idea about it.

The not so good news is that I have a small lump in my abdomen. I knew that, actually, because I could feel it, but I didn't tell Jerry partly because I didn't want to worry him unnecessarily and partly because of magical thinking that maybe if I didn't say anything it would go away. (Magical thinking doesn't work very well.) I'm getting the lump biopsied on Thursday morning. It could be a hematoma or a cyst; apparently random metastases in the abdomen are unusual, so we're trying very hard not to jump to any conclusions.

The other not so good news is that the CA19-9 is up again, to 187 from 156 last time. Again, a reminder to myself as much as to everyone else that this is a minor rise. I just don't like the direction.

So where does this leave me emotionally? I've actually been more bothered by the rotator cuff tendonitis on a day-to-day basis lately than by the cancer. While the cancer lurks in the background, the rotator cuffs hurt. Now suddenly I have to change my focus back. I'm back on the roller coaster, and I've always hated roller coasters. Generally speaking, though, I know that I'm in the best possible hands and have the best possible support, and this helps flatten out the emotional dives. Jerry says, "Whatever happens, we'll deal with it," and I immediately feel better.

Tomorrow I might as well just plan on spending the day at the hospital:
8:30 blood draw for the biopsy
9:00 appointment with the orthopedic physician's assistant to check progress on the rotator cuffs
1:15 appointment with the GI doctor to discuss the ulcer and the pain under the ribs
2:00 physical therapy

And then on Thursday morning I have the biopsy, but don't meet with Dr. Nickerson until next Wednesday. For reasons I don't quite understand having to do with chemo messing up the necessary bloodwork for the biopsy, I didn't have a treatment yesterday, which left me feeling like a kid on a snow day. Wow! a day off.

Keep sending good thoughts, and I'll keep you posted.

CAT scan

Just got back from the every-six-months CAT scan. This one has made me a bit more nervous than usual, because I've developed a few things that can't quite be called symptoms. They're more like blips on the radar, one by one not meaning much, but taken together perhaps pointing in a direction I don't want to look.

There's the weight loss, except that the weight seems to have stabilized again. Varying appetite, which seems to have little to do with how hungry I am.

There's the crushing/crashing fatigue that hits every day so that I need to take a nap. But again, I'm not the only one who takes what my grandma used to call a loll-down in the afternoon.

There's the ache under my ribs on the right side that is definitely more noticeable than it was a few months ago.

There's the CA19-9 that seems stuck around 150, though Dr. Nickerson points out that it hasn't changed much, and it's a major rise that is indicative of problems.

I wasn't even going to write anything until after Monday, when we see the doctor, but I'm trying to be completely honest here, and that includes worries, even when (I hope, I hope) unfounded.

A few days ago during chemo, the man sitting next to me started muttering to himself, so I said, "Bad day?"
"They all are. I don't know why this should take so long. I've been sitting here waiting for them to even start for half an hour."
"Well, they have to check your blood and make up the infusion and some times it takes a while."
He paid no attention, just went on, "Three days a week -- three -- I have to have dialysis and now I have to have this, that's four days gone every week."
"That's rough. What do you do to pass the time?"
"Nothing.... I watch T.V. Nothing."

I wondered, almost didn't ask, then figured why not? And asked, "Is it worth it?"
A pause, and then he said, "No." Another pause, and then he said, "I'm only fifty-five years old. I could live another thirty years. Thirty years like this, dialysis and chemo every week. No, it isn't worth it."

My first thought was "I'll trade you, right across the board. Your thirty years, even with dialysis and chemo for my uncertain shorter time."

But then I thought, "No. Not if it meant having to live in your skin," so I just said, "Hang in there. You never know what they'll discover soon."

Praise and complaint

I feel fortunate to be surrounded by competent people. The latest is the PT, who prodded my shoulder, praised my posture, and gave me generally reasonable recommendations for dealing with my rotator cuff tendonitis -- ice, exercises, and yes, I can continue to play trombone through this as long as I stick to the top three positions, which is going to be interesting.
Even after a day of following her recommendations, I feel better.

Except.

Except for the last suggestion. For most of my life I've been most comfortable sleeping on my right side, shoulder curled forward under me, and because of the super-flexible tendons that got me into this in the first place, that's way forward. And now it's a no-no. I should sleep with my shoulder tucked back, or sleep on my back, or sleep on my other side.

When you've slept with someone for over 40 years, there's a kind of pas de deux that takes place every night. You start spooned one way, then together turn onto the other side, then slide apart and sleep on your backs, then curl up slightly differently, then repeat. The sequence is unvarying and probably delicately timed. Until now, it's only been interrupted when the cat decides to sleep between us, stretched out crosswise.

But last night I either tried to curl my shoulder back (so where does the elbow go?), sleep on my back (and really snore), or try for new positions that wouldn't wake Jerry up (unsuccessfully). It doesn't seem fair that Jerry has to bear the brunt of this as I toss and kick and even try to stretch out crosswise, all without success.

Well, tonight is another night. Meanwhile, even the problems sleeping haven't stopped my jubilation at the visit to the PT. She said that as long as I worked at this she couldn't see any reason the rotator cuff problem shouldn't be fixed. It's such a joy to hear that something physical I have can actually be fixed.

Nature's first green is gold....

I WANDERED lonely as a cloud
That floats on high o'er vales and hills,
When all at once I saw a crowd,
A host, of golden daffodils;
Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

I love spring. Suddenly there are incredibly bright splotches of yellow all over the place, filling me with joy and hope.
However, I can't help thinking that Wordsworth was really lucky that his bright splotches of color were flowers rather than shrubs, or instead of A host of golden daffodils he'd have had to make do with Forsooth, forsythia!

Coffee. Sigh.

Well, croissants, too, actually, but on the cruise I had croissants for breakfast every morning. It's the coffee I miss, partly because it's such a big part of my self-image.

As a teenager, my fights with my mother were always ended with my getting her a cup of coffee. While we drank it we cooled down.

I remember drinking tepid (tap water) instant coffee in my dorm room at AUB, and the wonderful Turkish coffee my friend Mahmoud made, letting the mixture boil up to the edge of the pot three times, a feat made even more impressive by Mahmoud's blindness. He taught me to listen to the sound the coffee made as it climbed the pot.

Over the years, coffee was the accompaniment to conversations, to writing, to just sitting and enjoying a moment of relaxation.

I remember the smell of the coffee-roasters near the bus stop in San Jose, Costa Rica. I'd bring home a kilo of freshly-roasted coffee and one of freshly-roasted peanuts, and when the bus went past the cookie factory I'd go into sensory overload from the mingled aromas.

Then there was the high school English teacher in whose room I camped while teaching ESL. She always had a coffee pot going. I remember that as one of the most civilized years of teaching I spent at Keene High School.

I'm trying a different ulcer med now. Wish me luck. I want my coffee back.

Losing weight

I noticed today that I've lost four pounds in the past month, which for most people under most circumstances would be cause for celebration, or at least an extra piece of cheesecake. It's no proof of self discipline, though, especially since I was on a cruise for two of those weeks, eating whatever and whenever I wanted. (And by the way, this is not to scare anyone. I'm still at what the charts say is normal weight.)

It's just one of those things that cancer can do. There are several factors, only the first of which seems to fit my situation:

• The appetite isn't the same. I've noticed that while I still get hungry and enjoy eating, I just don't ever feel starved or voracious. I ate desserts twice a day on the cruise, but almost never felt like finishing one.
• The digestive system isn't as efficient. In extreme cases, food goes right through without any nutrients actually getting into the body.
• The cancer "grabs" the nutrients before the rest of the body can get to them. This is the basis for some people with cancer going on low-protein or low-sugar diets -- a bad idea, since it's actually cheating the rest of the body from getting any value it might from the food.
• Foods may taste strange or disgusting, or cause nausea or pain. The only food that bothers me is coffee, damn it. I'd be so happy to give up liver or turnips.

Troubles with eating can cause problems in the family. Loved ones watch the person with cancer refuse food or leave food on the plate and get terribly frustrated. Yesterday someone on the Johns Hopkins pancreatic cancer forum posted something that said in part: We try to get him to eat all the time but he refuses much of the time.... I find myself getting angry at him. I know it is hard for him and I have no clue but it is just food, it will help you live! Just drink the ensure and chew the food. I dont care what it tastes like! He has to see it from our perspective also, we are watching our loved one wither away!!! I hate that I am angry with him but I am scared that we wont lose him to the disease we will lose him to a side effect.

There were over 70 answers to this post. The frustration is real, and shared. People with pancreatic cancer described how hard it is to force food down and how their caregivers almost come to seem threatening and hostile. The plate becomes a battlefield.

The suggestions of caregivers ranged from "Let them eat whatever tastes good.... Lots of little meals are better than a big plate full of food.... Have you ever known anyone on pot who didn't get the munchies?...." and most importantly, "Don't let something like this come between you. Make whatever meals are possible a time of love and joy, not a power struggle."

And that last sounds like good advice for all of us.

Summing up

On the way back, we had a couple of days of cool, windy weather, but the sun still felt good.

So how does a vacation from cancer feel? Like a vacation from cancer. It was wonderful to leave it behind for two weeks. I missed a chemo session and (I hope) built up my strength and blood counts. I continued to take curcumin and some of the other meds, but as I looked around the dining room I saw quite a few other people opening pillboxes, so I didn't feel strange.

We didn't talk about my condition, except with friends from other cruises who already knew about it and with a couple who disclosed that she has multiple myeloma. After one conversation trading information and making in-group jokes, we never mentioned it again with them. It was almost like being normal.

Almost, but not quite. I realized that my energy levels aren't what they used to be. I needed as many naps as a two-year-old, and got cranky if I didn't get them. And I gather from Luther and Miriam, who took the previous leg of the cruise, leaving the ship just before we got on, that there was a good band and lots of dancing at night. But we missed it all, Jerry because he doesn't usually enjoy dancing anyhow, and me because I crashed early.

It was refreshing. It was wonderful. It was too short.