Tuesday, June 29, 2010

Because you can't be gloomy 24/7

Despite the many stresses in his life, Jerry managed to continue working with his usual meticulous craftsmanship.

Orchidaceous -- I promised her I wouldn't post this picture to the blog. So I lied.

Monday, June 28, 2010

Quick update

Blood counts are lower, CA19-9 is higher -- up to 589. Not great, but the doctor says it's still too soon to tell if the FOLFOX is working. One more round of the chemo and we'll have a better idea.
I'm feeling a bit low these days, and not just because food either doesn't go down or doesn't stay down. People have said all along that I have a great attitude, but not right at the moment. Oh, well. This, too, shall pass.

Friday, June 25, 2010

House projects

I haven't been exactly full of energy the past few days, so it's good that someone around here keeps busy. Shown in progress, but now finished, is the new red accent wall (next to Jerry's knee you can see the sage green it used to be). Quite a project, since it involved taking all the books out of the shelves, and somehow evolved into sorting them. I got rid of three boxes of anthro books that I haven't looked at in 25 years. Anyone want them? (Except I think that after they languished on Freecycle for a bit we took them to the dump.)
Anya was amused at the red wall because Jerry had objected so strenuously to her and Max painting one of the rooms in their previous house red. Jerry says it just goes to show about old dogs and new tricks.
Jerry has also replaced two bedroom windows this week. He's beginning to run out of projects. Maybe a moat or a turret?

Tuesday, June 22, 2010

Yesterday's meeting with the oncologist

I've been having more nausea than before, and in fact, have gone back to scattering large-sized Stonyfield Yogurt containers around the house in case of need. (Lots better than those liver-colored, kidney-shaped bowls they give you in the hospital.) Also, lots of fatigue and weakness, so the big question for Dr. Nickerson was whether these symptoms were due to the change in chemo, the progression of the disease, or something else entirely (leprosy? schistosomaisis?)
His feeling was that after only two rounds of the FOLFOX he couldn't tell for sure, but that because I get the symptoms after the meds should be about out of my system it's probably the course of the disease. Not the answer we were hoping for.
In any case, we decided to keep me on the FOLFOX for another round or two and see how I respond. Best case would be that the tumor markers go down, that I feel better and stop throwing up, and that I'm not so tired. So keep your fingers crossed for that, and I'll keep you updated. Meanwhile, I'm going to go take a nap.

Sunday, June 20, 2010

Peaceful getaway

This is the view of the herb garden and property at Abbott's Glen http://www.abbottsglen.com/
a wonderful, peaceful getaway with a pond, sauna, interesting guests, delicious dinners, and (this weekend) beautiful weather). It was a good respite.

Except that I'm having a lot of trouble with nausea and fatigue these days, so mostly Jerry dipped in the pond while I slept. We see Dr. Nickerson tomorrow and have a lot of questions for him. I'll let you know the results afterward.

Wednesday, June 16, 2010

Incredible unbelievable weekend

We drove down to Florence on Friday night, I thought to celebrate Max and Anya's birthdays. When we got there, Anya said that Miles had something to show me -- it turned out to be Cinda !!!!! who had sneaked in from Seattle for the weekend. I was totally surprised and delighted.
We stayed overnight there, had a wonderful, lazy, relaxed morning. (You can't see Miles snuggling under the duvet, but he was there.)

Then, after a trip to the local yarn store, which is knitters' heaven, Cinda came back to Marlborough to spend Sunday and part of Monday. Max, Anya, Miles, and Stella (to the left, below) came up for lunch Sunday.

Jerry grilled us swordfish; Cinda grilled us asparagus. (Recipes available on request.)
But the weekend continued. Monday my brother Luther and sister-in-law Miriam came up for the day, luckily overlapping Cinda, so they got to see each other. Cinda left to go back to Seattle just after they headed home.
And to top it all off on Tuesday a college roommate I hadn't seen in 45 years but re-connected with on Facebook (yay, Facebook) and her husband, on a trip to the US from Greece, came up to see us. It was funny to see how memories came floating back as we talked --nothing profound, mostly names and faces, a few anecdotes. It was an interesting experience.

And then I zonked out, and have just slept a total of eleven hours. But what a glorious weekend!

Friday, June 11, 2010

More cheers for curcumin

Two friends have recently gotten in touch with me because relatives are just starting treatment for pancreatic cancer. I was happy to pass on my best thoughts for dealing with the Beast and the chemo, but I suddenly remembered that I forgot to talk again about curcumin.

Curcumin comes from turmeric and has been used in South Asia for generations as a panacea, but recent research suggests that it may be especially useful to boost the power of chemotherapy drugs. This is real research at, for example, MD Anderson Cancer Center in Texas. So far, the research hasn't gone too far -- it must be hard to get funding to study something that millions of people eat every day -- but at the very least, it shows that curcumin seems to be harmless. I've been taking it along with the chemotherapy for two years now, and so far it seems to be working! (But anectodal evidence is not worth much, as we all know.)

For the fine (upbeat, enjoyable, authoritative) blog that started me on curcumin, I recommend that you check out Margaret's Corner (living with myeloma) http://margaret.healthblogs.org/ and also Curcumin: the Indian Solid Gold http://www.curcuminresearch.org/ . There are contraindications, but in general it is worth looking into.

Tuesday, June 8, 2010

Another day of full-body macrame

This is Jerry, trying to sort the two chemo tubes plus the wires for my non-battery laptop. Things got even more confusing after he'd left, when I had to go to the bathroom and deal with those plus the two wires attaching the IV pole to the wall. I spent more time untangling than I did peeing.

But (yay!) the new anti-nausea med seems to have worked much better than the old one did, and I feel good today. It also helped that I think I've at least partly solved the sore shoulders problem by sleeping on two pillows, one the temper-pedic and the top one nice and fluffy so I don't feel as though I'm on a sandbag.

The one new and interesting side effect is the feeling I get when any part of my body touches something cold, and I mean less than room temp. I've always had a minor form of synesthesia, a condition where people hear music as color or taste foods as sound. Mine is to experience pain as color + shape and texture, so that a toothache, for example, is always a purplish-red neon tube. Well, now when I touch something cold, I perceive something like the male side of a velcro strip, in silver. It also hurts, and I've had to put winter gloves next to the refrigerator so that I can take the milk out without flashes of silver. It's more annoying (and very interesting) than really painful, but I'm afraid that I won't get many swims in Stone Pond this summer. I usually don't make it in until August, anyway.

Monday, June 7, 2010

The Last Lecture

I finally read Randy Pausch's The Last Lecture yesterday. I didn't want to read it while I was working on the major part of my own book, but now that I'm within spitting distance of finishing mine I figured I should read his, partly to be able to mention it in my query letter (why we don't compete), and partly, of course, from interest. He and Patrick Swayze (also with a book out, but it's out of the library this week) were the closest the pancreatic cancer community had to poster kids. Both Pausch and Swayze died, and after a flurry of interest, pancreatic cancer retreated from public consciousness. Unfortunately, what we need is either a continuing stream of poster kids or at least one person to last long enough to keep the disease in the public eye. I'm working on the latter.

(Big sigh of relief.) We don't compete. Pausch barely mentions the nuts and bolts of his disease and treatment, except for the obligatory how-I-found-out-and-reacted chapter. I have one of those, too, as does anyone who's had the house fall in on them. His book generally, however, is much more "what I've learned in my life and want to pass on" than "how I'm dealing with and living with this impossible situation." Yes, it is funny and inspirational, and I cried as I read his anguish that he would not live to see his children grow up -- but mostly I felt relief that it was not my book.

By the way, thanks to everyone who answered and who sent emails with suggestions for dealing with nausea. Smoothies, snacks at frequent intervals instead of real meals, and that brown rice pudding all sound like good ideas, and I'm trying them all!

Friday, June 4, 2010

Side Effects so Far

You asked, didn't you?

I don't like telling about side effects or how I'm feeling unless I'm doing really well, partly because if I let you know I'm not at my best I worry that I'll sound like I'm whining. Besides, I want to be like the young woman I met in the infusion room who wore a cape her friends had made her that said Super Cancer Girl. Super Cancer Girl doesn't get side effects. They just slide off her back.

But on the other hand, I'm trying to be totally honest here. So here are the side effects I've experienced in the past two weeks, my first cycle of Folfox.
  • Fatigue and weakness. The fatigue comes up behind me and sandbags me. I'll be doing fine, as I was yesterday when my group -- women's group? book group? knitting group? kaffeeklatch? tea party? (that's actually what we call it, but the name's been co-opted by some political group) got together. I had a good time, and then barely made it home before I fell asleep on the couch for an hour before I could get up for some lunch. The weakness is both physical and psychological; generally I feel as though I have no reserves to dip into. Luckily the NYC visit included a lot of down time for me, which I needed, even though I hated to waste a minute on just lying there. The nurse says to exercise, rest, and pace myself (all at once? Then I can practice patting my head and rubbing my tummy at the same time.)
  • Nausea. It was fairly severe for the first couple of days and has been more intermittent and less problematic as time goes on. The nurse says they'll change the pre-med anti-nausea formula for next round and that I should take all my anti-nausea pills before I really need them instead of chasing after the nausea.
  • Loss of appetite, feeling of fullness. Food just isn't interesting, and I have to force myself to eat, even when I'm hungry. Probably because of that, my weight has gone down three pounds since I went on the Folfox. I'm still within a normal weight for my height, but people are beginning to tell me that I look tired, which I'm afraid means gaunt. Haven't checked this one with the nurse yet, but I'm afraid she's going to recommend Ensure, which, in my grandmother's words in a slightly different context, is pig slop. Please send suggestions for tasty, high-calorie, non-stomach-upsetting foods.
  • Tingling and numbness of the fingers (peripheral neuropathy). Not much that can be done about it.
With all of that, I ought to mention that there are some side effects that they mentioned that I don't have -- primarily, so far, I'm not oversensitive to cold. The nurse said to keep gloves near the refrigerator so I could get things out of the freezer without pain. I haven't needed to yet.
Also, no vomiting. No diarrhea or constipation. No fevers.

All of this makes me realize how easily I got off with the Gemcitabine. Looking back, it was a walk in the park. And just because I reacted this way to the first cycle of Folfox doesn't mean I necessarily will to the next. Or the next. Or the one after that. The first time is always a learning experience.