Saturday, July 31, 2010

How little it takes

I think it was Wednesday that we got a call from the receptionist/assistant at the office of Dr. Drazin, the chemotherapist to whom we went for a second opinion. We had sent her a "thank-you" card, something we usually have done with many of the medical people we've come into contact with -- and something she particularly merited because when she heard the story and knew time was of the essence she got us shoe-horned into the schedule, I think scheduling us before the insurance approval had arrived (though it did). She was practically crying, saying her day started out badly and the card cheered her up and if there was anything -- anything -- she could do for us, we need only ask, even though I'm not her doctor's patient.

We've had a lot of experiences like that, with medical professionals and many others willing to go out of their way or give that little extra effort. We have also done a certain amount -- well, it was Jen coming up with the ideas -- to encourage people to give us the best care. Jen bought a bunch of treats -- Tootsie Roll pops, chocolate-dipped mint sticks, dark chocolate squares and the like -- and offered some to almost anybody who came into the room, from head nurses to cleaning people. I've mentioned before how Jen chipped in by helping with linen, stool samples and the like during my first hospital stay, and how the hospital personnel said it was rare and appreciated. I think all this pay-it-forward stuff contributed to my having an unusually positive hospital experience. And it took so little effort.

Chemo still going well

It has been a little more than 48 hours since I had a chemo treatment, and so far the experience is mostly unremarkable. I have not had nausea -- although a couple of times on Thursday I got that little pre-puke taste in my mouth after a hiccup, but it was just a mouthful, and medication handled it nicely, thank you.

Based on how I acted, I was probably a little fatigued yesterday -- I didn't do much and kept dozing off. I know chemotherapy is a real ordeal for a lot of people, but so far it has been pretty easy for me.I think my overall good health except for that pesky tumor, still mostly intact after everything, is probably a factor.

Monday, July 26, 2010

Backyard birdsong book

Yesterday was our anniversary (#29) and in line with the increasing attention we have been paying to the multitude of birds in our yard, Jen got me (us!) a book called the "Backyard Birdsong Guide." The fascinating thing is that it includes a little machine with recordings of 176 different songs covering about 80 different birds. This makes it potentially very useful, given that even when one is observing fairly closely you often hear birds that you never see, or don't see closely enough to identify them from their markings.

I don't want to sound too much like on old fart marveling at modern wonders, but this book is something of a wonder. The playback device is about the size of an old-fashioned pencil case. It would not be possible except for digital technology. I'm also fascinated at the amount of work involved in collecting all those recordings. It's co-published by the Cornell Lab of Ornithology, so it's likely the publisher was able to call on cumulative work over the years by Cornell scientists, but still and all, that's a lot of recordings. And they are distinctive. A duck doesn't sound a bit like a sparrow. And to put it all together in a product Costco can sell for 12.99 (it's 19.77 at Amazon) is a tribute to market scale economics.

Chemo still going just fine.

It's Monday, and I still haven't experienced side effects from my chemotherapy treatment on Thursday. I hope that's a good portent for the future. In addition, the open wound on my incision is now closed up enough that we decided this morning to stop packing and dressing it and just let it finish closing up those last few centimeters on its own. That's a signal piece of progress. I still feel a little tightness around the incision, but that will take a while to clear up. I feel really good about licking the big C pretty thoroughly.

Saturday, July 24, 2010

'Twas a Bullock's Oriole

Since we have spent so much time watching and listening to birds during my prolonged period of staying at home and fighting cancer, and since we have trees and bushes that attract flocks and flocks of birds, we got a couple of Southern California bird books to try to identify some of the birds with which we were not familiar. Looking through them has led us to believe that the bird family we watched last summer and recorded in some blogs with such fascination was a Bullock's Oriole. They established a sack-like nest that looked to be made of excelsior-like straw, very light-colored, glued to the back of a palm frond in one of our front yard tall palm trees. The birds are bright yellow and black (a little white) and the female was almost as colorful as the male. We watched the parents sit on what we presumed must be eggs, then could hear chirping and saw the parents bring food apparently tirelessly. Finally we were able to see little beaks stick out of the nest and a few weeks later watched the chicks take their first flights. It was a fascinating experience, observed from the comfort of our front porch. We saw several of the adults flying around this year but didn't see a nest.

We know we have tons of house sparrows and mockingbirds and quite a few hummingbirds (haven't figured out which variety yet -- don't think it's in either book). Now we're finding jays and think we've seen a few starlings as well as mourning doves. It's always interesting to learn more. We bought a birdbath to attach to one of our fences and are deciding just where to put it. That should bring in a lot more birds to see close-up.

Uneventful chemo

It would be just too churlish to say I'm sort of disappointed, so I won't. But almost 48 hours after receiving chemotherapy on Thursday, I have experienced none of the possible side effects -- nausea, fatigue, diarrhea, etc. -- the preparatory pamphlets said were possible. Of course Dr. Saegal's nurses included an anti-emetic (Aloxi) and a steroid (Decodran) in the IV cocktail I received. I also had by my own back-up. The chemo is Gemzar.

This has got to count as good news. Even the recent literature suggests that most people find chemo at least a bit of an ordeal. If it does the job of killing any and all cancer cells without unpleasant side effects, all the better! This, combined with the 5-year-survival rate news we got from Dr. Drazin -- 70% without chemo if I understood correctly -- has me feeling very good about being completely cancer-free.

Thursday, July 22, 2010

Starting chemo today

Today is the day I finally start chemotherapy, and while I would be surprised if there weren't some unpleasant side effects, I'm actually looking forward to it. It marks the beginning of treatment that is more precautionary than absolutely necessary -- they think they got all the cancer with the Whipple surgery and haven't detected any other hot spots -- it still strikes me as a good idea. And beginning the therapy means that I can see an end to it and a resumption of something resembling normal life.

We feel better about starting chemo (the compound they're using is Gemzar) after having gotten a second opinion from Dr. Noam Drazin, the chemotherapist my surgeon, Dr. Nicholas Nissen, normally uses. He was very impressive in his knowledge, and told us he would have used Gemzar, perhaps in a slightly different regimen, and that our doctors in Murrieta seem to know what they're doing. He also had a comforting statistic none of our other doctors had imparted to us. The five-year survival rate after Whipple, even without chemo and radiation, is 70% for the stage of cancer I had. With chemo it should be better -- and aside from that nasty tumor I'm in excellent health and a good candidate for a long life now. He also said that ampullary tumors seldom come back after having been removed. All this was reassuring on several levels. I'm ready to do the chemo and radiation now.

Friday, July 16, 2010

Chemotherapy next week

Everything seems to take longer and be more complicated to get accomplished than seems necessary sometimes. It doesn't seem as if it should have taken until today to get an appointment to begin chemotherapy next Thursday, considering that we had the educational sessions a full week ago. But it did. Ah, well. We'll be ready and then some.

Combine that with Southern California's current humid heat wave and things just seem a bit out of joint. Yesterday afternoon at about 3:30 the sky darkened and the wind whipped up considerably. The Weather Channel said there was a thunder-and-lightning storm near Hemet and we were just getting an edge of it. But it turned out to be an edge that featured thunder and lightning here in Lake Elsinore as well, around 6:00 or 7:00. That's unusual. I know summer and rain go together in most of the country -- I lived in suburban Virginia for 8 years -- but we usually don't get any rain in Southern California after about the end of April.

Today the yard is full of bark blown off our eucalyptus trees and other vegetation brought down by the wind. Clean-up tomorrow, but it's still expected to be near 100, and while I'm not as frail as Jen thinks I am, I can't spend a whole lot of time in that kind of heat before wanting to go inside where it's cooler, since I can't go in the pool yet thanks to the much smaller but still present open wound. . Should be a lazy day tomorrow, buy we'll have to do some pick-up.

Places In Between

I have not been completely frivolous in my reading since being put on disability due to my cancer and the need for surgery and treatment. One of the motre interesting boks I've read was Rory Stewart's "The Places in Between." It records his walk from Herat in western Afghanistan across various snow-covered mountains -- starting in January 2002, no less, just after the Taliban was thrown out -- to Kabul, a trek that took him 36 days, all on foot. There was no electricity along the route he traveled, but various valleys controlled by different tribes. These places were generally isolated from the rest of the country. In some valleys the ousting of the Taliban made a difference in who controlled the local region, and in some valleys it made no difference.

Stewart took money with him so he could buy food if it was for sale in a marketplace in some of the villages he visited, but for the most part he depended on the ancient Muslim custom of hospitality to strangers (the fact that he was British rather than American and spoke some local dialects probably helped). He had some rough patches - youngsters threw rocks at him and at the mastiff dog he adopted along the way more than once, and some people with Kalashnikovs started out rather hostile -- but he made it. He incorporates some history into his observations -- he was in fact following a path taken by Babur, the first Mughal emperor of India. It was quite an adventure. I think his experience helps to point up the difficulty of establishing an effective central government in Afghanistan, let alone a reasonably honest one. The local villages he visited were isolated and felt no desire to have a central government meddling with the way the elders ran things.

Definitely worth reading.

Thursday, July 15, 2010

Pool floating music

Because of my open wound I haven't been able to go into the pool, although it is now prime pool-floating season and the pool (thanks mostly to Jen, who has seen her innate mechanical aptitudes blossoming while I've been somewhat out of it) is in beautiful shape, with the water about 84. In anticipation of being able to swim fairly soon, I'm offering my annual suggestions for proper lounging in the pool and doing pretty much nothing music.

My favorite is still "Journey to the Amazon" by guitarist Sharon Isbin. Ms. Isbin is a first-rate classical guitarist -- I have a Rodrigo "Concierto de Aranjuez" and a Vivaldi recording, and I have seen Bach, Ponce, and other recordings. Here she takes on Brazilian popular music, with its intricate rhythms and gently swinging character -- sambas, bossa novas, etc -- along with saxophonist Paul Winter and percussionist Thiago de Mello. Enchanting!

I'm not sure whether or not to recommend Diana Krall's "From this Moment On" album, which I love. However, it has so many parts that repay careful listening, including what I now see as definitive versions of "It Could Happen to You," "Little Girl Blue," and "Willow Weep for Me," that it shouldn't be seen as mere background music. If you like American standards and good singing, this one's for you.

Finally, the Jacques Loussier Trio 's "The Brandenburgs," which includes arrangements of the six concerti for jazz trio. Interesting. The music is changed almost not at all, except for relaxing the rhythms a bit so it can swing. And yet Bach played almost note-for-note makes some pretty decent jazz -- as the Swingle Singers demonstrated back in the 1960s. This is music that holds your attention yet invites flights of the imagination.

Quote of the Day

"Civilization can only revive when there shall come into being in a number of individuals a new tone of mind independent of the one prevalent among the crowd and in opposition to it. A new public opinion must be created privately and unobtrusively. The existing one is maintained by the press, by propaganda, by organization, and by financial and other influences at its disposal ... This unnatural way of spreading ideas must be opposed by the natural one, which goes from person to person and relies solely on the truth of the thoughts and the hearer's receptiveness for the new truth." -- Albert Schweitzer, from "Civilization and Ethics," 1923

Tuesday, July 13, 2010

Lessons from John Wooden

The recent death of legendary UCLA basketball coach John Wooden at 99 reminded me of a lesson I have learned the hard way. If you admire somebody and they are in anything remotely resembling close proximity to them, make it a point to meet that person even if you feel you are being a little pushy. I was at UCLA off and on for six years, during which time I went to Provo with friends for UCLA's first stint in the regional NCAA playoffs and came to admire John Wooden inordinately. But I never made it a point to meet him. He was gracious to everybody, so I'm sure he would have been gracious to me, and perhaps a friendship would have been sparked. But I didn't play basketball so I figured he wouldn't be all that interested in me.

I also regret not making it a point to meet Friederich Hayek the year he took a guest professorship at UCLA. I had already read "Road to Serfdom" and been influenced by it (and by Milton Friedman's "Capitalism and Freedom") in the direction of a libertarian worldview. So we would have had something to talk about. But he was teaching a graduate seminar and I was an undergraduate and I figured it would be pushy to call on him during office hours or to make an appointment. I deeply regret that because I never did get to meet him -- though I met Milton Friedman some years later and even developed a bit of a relationship with him, Rose and David.

Learn from my mistakes. Make it a point to meet people you admire when you have a chance.

Going flaccid

One of the less attractive aspects of having been a semi-invalid for several months -- limited as to physical activity early on from the PICC line, now because of the incision that is still an open wound (if greatly reduced in size) in my belly -- is seeing my muscles go flaccid. Not that I had anything like huge arm muscles before, but what I had was pretty well defined, even when I was more overweight. Now the flesh hangs loose both in forearm and upper arm. It looks for all the world like the arms of a really old man, which I didn't want to look like for a bit longer. Once the wound is secure I can do a bit more, but then I will be deeply into chemotherapy (we'll get word Thursday as to when we begin) and I don't know just how active I'm going to feel like being during that regimen. People tell me that once reasonably normal activity is resumed -- even stuff like sweeping and doing chores around the yard -- the muscle tone will return. I hope so. The flaccid look is a bit of a drag.

As to weight, here's some context. I played football my freshman year at 165, when I was probably in the best shape of my life. I've been that low a few times since, but mostly have hovered between 170 and 190. Then maybe five-seven years ago I ballooned up to 225. I began losing that weight gradually (and sometimes fitfully) a few years ago and was right around 205 when the jaundice hit in April. Since then I've lost weight steadily and seem to have settled at around 170. I still have flab around my belly, but my waist size is down four inches. I figure to make it more muscle and less flab and stay around this weight once the treatment is complete, which is now looking like October.

Saturday, July 10, 2010

Delayed by the open wound

Quite frankly, our focus on the open wound that Dr. Nissen discovered that day we were getting ready to leave Cedars-Sinai, has been -- once Jen got used to packing it -- to marvel at how steadily it is healing. Our trip to the doctors Thursday and Friday, however, was a reminder of how the wound has delayed the next step in treatment -- precautionary chemotherapy. Both the chemo and the radiation doctors (I'll get their names in a future entry) are eager to move ahead quickly, and grateful that during the time the wound has been healing no new infection or complication has shown up to complicate treatment plans.

It's kind of moot now. The wound that was four inches long and looked like a couple of slabs of prime beef is now smaller than an almond and will likely be fully healed by the time we start chemo -- though apparently that's not necessarily required. It's the radiation that couldn't be done until the wound was healed, but that's more than a month away and the wound should be a distant memory by then.

Moving on to chemotherapy

Almost didn't realize just how long I had been away from this pop stand. Part of the reason is that we've decided writing about politics, which I do for a living, even on my own personal blog, might compromise my status as being on disability, and quite frankly little else seems important enough to me to record here. In addition, with the open wound in my stomach, sitting in front of the computer for long stretches is simply not especially comfortable.

However, I suppose a few people are interested in my physical condition and may check here to find out, and quite frankly that is what does seem to consume me, in general for the better. I'm very much interested in getting better. So . . . we spend a good deal of Thursday and Friday at oncology doctors and made preliminary plans for chemotherapy and radiation. We may go the L.A. for a second opinion, but at this point I fee comfortable with the clinic in Wildomar. Our primary care physician, Dr. Susan Danek, is favorably impressed -- and her father is using them.

The chemo doctor is recommending three weeks of chemo and one week off, to be followed by combined chemo and radiation, apparently for four or five weeks, and then another course of chemo. It's longer than I expected it to be. But he says that while it's encouraging that all the post-surgery reports show no remaining cancerous tissues, the fact that there were some affected lymph nodes -- taken out during the Whipple surgery --, suggests an aggressive approach to make sure no cancer has any proper chance of establishing itself again. I concur.

Bottom line: will probably start chemo next week, assuming Anthem insurance authorizes it (they've been good so far). We'll see how it affects me. They gave us an introductory session Friday noting that there could be nausea and vomiting as well as fatigue and diarrhea. I probably won't feel like doing much of anything on the day of treatment and probably the next day as well. Have take some steps to cope with the side effects.