Tuesday, February 12, 2008

From Paradise to Poison

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Dave’s Great Adventure, Book Three
Chapter 1, Verse 2
February 12, 2008
From Paradise to Poison

Yeah, Kathy and I went from Paradise to Poison in 2.6 days this week. We spent most of five days in Kauai last week and got home just in time to repack and get back to M. D. Anderson in Houston for the start of my chemotherapy. We were in Kauai because…well, it’s a long story and I’ll have to come back to that later.

Part I: Paradise
We left Denton for Kauai last Monday, with my doctor’s blessing. I told him that we’d cancel our previously made travel plans if he thought we ought to start the chemotherapy right away, but he insisted we go ahead with our plans. He mused that maybe we’d need an assistant to go along with us. Don’t know WHOM he could have had in mind. We had planned the trip to start the day after the Super Bowl, foolishly thinking that the Cowboys would be playing in that game. We didn’t count on the Giants beating the ‘Pokes on the third try (for non-football fans, the Cowboys beat the Giants twice during the regular season, only to have the Giants beat them in the playoffs and go on to the Super Bowl!).

We also planned on using our frequent flyer miles with United Airlines to get a first class upgrade on the very long flight to the island. So we booked with a partner airline, U. S. Airways, only to find that they wouldn’t grant us an upgrade with UA miles. Live and learn. The flight was fairly uneventful except for the takeoff after we changed planes in Phoenix. It was snowing as we were landing there, raining as we took off, and a bit rough once we got into the air. And, as we took off, bouncing around a bit, we saw and felt a sudden “FLASH-THUD.” Nothing too bad, though. Moments later the captain came on the speaker and announced “You probably noticed that we were hit by lightning back there, but everything looks good and all the instruments appear normal.” He further noted that sometimes lightning can cause pinhole burns in the fuselage, but there was no indication that our fuselage had been damaged. I guess this happens more often that we think, and generally causes no problems. The rest of the flight was uneventful and we got to Kauai on time. We gathered our luggage and headed for the rental car area. The chickens were a surprise, though. We heard a rooster crowing as we traversed the short distance to the rental car counter and I wondered why someone would have a farm near the airport.

So we claimed our car and drove the short distance to the Marriott Resort and Beach Club, a very nice place to spend time in Kauai. The resort was right on the beach, on a calm bay with gentle surf and soft sand. It was magnificently and immaculately maintained, with palm trees, multiple koi ponds, tropical flowers and bushes, grass that looked like putting greens, and marble and tile walkways. Just getting into the resort was impressive. You descended a three story escalator which takes you to the courtyard, a large 50 meter square park/garden surrounded with huge Romanesque columns that one might see around an ancient temple. Our room had an ocean view, too. It was a neat place, as well it should be. Did I mention that the place cost pretty near $500 a night?

Now, I’ve paid less than that for a month’s rent or a house payment in years past. But, it was after all, a very nice place on a very expensive island. But wouldn’t you think that for $500 a day there would be a lot included? I would have. But, think again. Want to park your car? $7 a day, unless you let the valet do it for $10 (plus a tip, of course). Want breakfast? About $10 for a continental breakfast, about $20 for a full breakfast. Internet access? A mere $13 a day. There were lots of activities you could take part in as well. Pilates was $5 a day, surfing lessons were $75, scuba lessons were $35, and so on. Bring lots of money!

But it was beautiful there, and we kept hearing those roosters crowing! It was rainy and cool when we arrived, but we wanted to see the island despite the weather. Our first full day we went to Waimea Canyon on the leeward side of Kauai. Now, Kauai has areas which average 440 inches (really!) of rain annually which makes it a wonderful place to grow things. They call their island The Garden Island. “Lush” doesn’t begin to describe the appearance. And it’s the area described in “Puff The Magic Dragon,” the song of decades ago (remember the references to “the land of honah lee” which was “by the sea“). Hanalei is a bay on the northeast part of Kauai. Cool. It has also been the setting for at least parts of several movies and TV shows, like “Jurassic Park,” “Raiders of the Lost Ark” and “Fantasy Island” (“The plane, boss, the plane!”) among many others.

Anyway, we went to Waimea Canyon. The weather was not beautiful, being intermittently rainy and windy and cool, but it was nevertheless, wonderful. The drive was up narrow, twisting roads, surrounded and enclosed by forests or jungle. We got to one of the first overlooks and had a magical moment.

We walked among several chickens (there they were again!) and reached the railing, looking at the vista before us. The wind was rushing by quickly and it was cool but not really cold. Waimea Canyon is a beautiful, smaller, red/brown /green version of the Grand Canyon and is about ten miles long. The wind was blowing bands of rain and mist through the area with the sun breaking through intermittently. We were standing in the misting rain and below us, below us (!), was a rainbow. I don’t believe I’ve ever looked down on a rainbow in all of my sixty-one years. It was a complete 180 degree rainbow, beautiful to behold. I got out my camera. The batteries were dead.

Across the canyon was a waterfall, actually a two part waterfall. A large stream emerged from the forest atop the canyon walls and began its journey to the bottom to join its friends which were flowing from other areas of the canyon walls. It fell about fifty feet or so, but was stopped by an unseen pool, a water hideaway behind the green growth along an invisible ledge. But it escaped the pool and tried again to flow to the canyon bottom. But it couldn’t. The stream dropped another fifty feet or so down the side of the reddish slopes, but then was foiled again and again in its attempt to reach its goal. The wind repeatedly whipped the white stream of water to the right, dissolving it into a faint mist. The stream couldn’t achieve its goal because of forces beyond its control, though it tried and tried. Sometimes, despite our best intentions and attempts, we can’t make things work out the way we think they should. Life’s little lessons from nature.

One more thing before I stop this too-long travelogue; we took a helicopter ride, like so many tourists. Our copter flew around the island but at one point flew, our pilot said, “into the volcano.” To us it looked like a large, deep valley. But what was wonderful about the place was that there was an incredible, uncountable number of waterfalls, in all directions. I’ve never seen so many falls in one place at the same time. It was fantastic, beautiful and stunning.

The next day we left Kauai at 11:30 PM for a long, miserable overnight flight back to Texas (which is why I wanted to be in first class seats) and got back only to have to get ready to leave again. Tired is not the way you want to start out a trip for chemotherapy.

Oh yeah, about the chickens. Just like Colorado is overrun with rabbits, and Texas is overrun with coyotes and armadillos, Kauai is overrun with chickens. The unsubstantiated rumor is that they got loose from a chicken farm during a hurricane, and now are free-range and live all over the place. They are beautiful, for chickens, with the roosters having golden mantles over brown bodies with black/green iridescent tails, and the hens are various spotted shades of brown and reddish brown. And they are just about everywhere you go on the island. Kinda like island mascots.

Part II: The Poison
My, my, my, how things have changed. Long -time readers of my journal with its descriptions of my treatments (and so many other related or completely unrelated topics) may remember some of the many restrictions and warnings that I have been given before my chemotherapy infusions in the past. (For the full stories look at the entries for July 2002). A few of them are:
--We can’t give the Rituxan until your white count is below 50,000.
--You have to avoid fresh fruits and vegetables while your white count is depressed by the chemotherapy.
--You have to drink liters of fluids and we have to infuse at least two liters of fluids after each chemotherapy infusion to flush the drugs out of you system.
--You have to take allopurinol for the duration of your chemotherapy.
--You should avoid sexual contact while your white count is low.
--Increase your intake of rich foods in order to maintain your weight.
--No dental work will be allowed during your chemotherapy.
--Et cetera.

Before we began “our” first round of chemotherapy in 2002, we certainly felt like it was a REALLY BIG DEAL. I mean, they’re putting very toxic substances into your veins which have any number of dangerous side effects. This was reinforced by our pre-chemo briefing. Kathy and I watched a thirty minute film on chemotherapy and its possible side effects and were given a bunch of pamphlets to read to make sure we knew what to look out for in terms of problems and complications, which included all the above and much more.

So, this time we met with Dr. Keating before we started our treatments here in Houston and his briefing was exactly this:

“Everything in moderation, no restrictions.” Quote and unquote.

I just couldn’t believe that, having expected another long talk about the do’s and don’ts of chemotherapy. I told him that before my earlier rounds of chemotherapy I’d been warned about eating fresh vegetables and fruits, which might be contaminated with bacteria, and that sexual contact had been proscribed during my times of very low white counts. He smiled a bit and said, “Well, was that because she’s a vegetable…or are you a fruit?” (Insert rim shot here.)

The approach to chemotherapy here is almost casual, I suppose because they do so much of it. And it’s not just in the “everything in moderation” advice. It applies to the drugs they use as well. They use a lot less, overall. You may remember that when I was first scheduled to begin my therapy in July 2002, we couldn’t use the Rituxan at first because my white cell count was 67,000. There was the fear of severe reactions if too many white cells were destroyed at one time, each of them releasing cytokines, lymphokines and histamine releasers, substances that are very useful in fighting infection by causing inflammation, but potentially dangerous if released into the blood stream in large quantities. They can cause severe low blood pressure, difficulty breathing and severe allergic type reactions (called anaphylaxis).

Well, now…. When I got here my white cell count was 88,000 (down a bit from two weeks ago) but despite that elevated count, not only were we going to give the Rituxan in the first cycle, we were going to give it as the first drug and in larger quantities than I’d had several years ago. Nobody had any reservations about it at all. And you know what? These guys in general, and Dr. Keating in particular, invented this regimen and they probably know best what works and what is safe.

And they use far lower doses of less powerful steroids in conjunction with the drugs. The steroids were the drugs I took several years ago which caused me to gain fifteen pounds or so with each infusion, and grow my little “man boobs.” This time, rather than taking the powerful steroid Decadron everyday I was getting the infusions of the various drugs, I’m taking the much less potent steroid hydrocortisone, and I’m only taking it on the days I get the Rituxan, not every day of the chemo infusions. And I’m only going to take the allopurinol for five days total, not for four months. (It’s a drug that prevent all the debris from the millions of white blood cells that are being destroyed from clogging up my kidneys.) They do add one more drug I didn’t have before, an anti-viral drug called Valtrex. This is a drug commonly used for herpes, but has activity against many other viral infections. It’s used to prevent reactivation of any latent viruses that might do me harm while I’m severely immunocompromised or weakened. I will be taking this as long as I’m undergoing the chemotherapy.

And back to the “consume mass quantities” of fluids program that previously had me strolling back and forth to the bathroom during my infusions and for the day following it, since I had been instructed to keep drinking large quantities of water for 24 hours following the completion of the infusions…. Well, whereas in Denver they infused two liter of fluids with the chemo drugs, here they put in about 250cc, about one tenth as much. And I have been given no particular instructions about forcing fluids after the completion, though I am drinking more than I usually do in the evenings.

This has gone on too long, but before I close this “verse” I’d like to tell you how my first two days of the chemotherapy have gone. The first day I had the Rituxan (which I’ll explain later). They go slowly with the infusions because of the possibilities of the reactions I mentioned earlier, so the infusion took about six hours. But the only problem I had was with the Benedryl (diphenhydramine) which I was given as a pre-med to help prevent reactions caused by the rapid dissolution of millions of leukemia cells. It made me loopy for a couple of hours, but once it wore off, I was fine, except for a bad headache. Then today, I got the more toxic drugs, Fludara and Cytoxan. They went in without any problems whatever, but within a few hours of getting “home” to our motel, I was starting to feel weak and fatigued. And that was only after the first doses. We’ll see how I’m doing after I get the next two day’s worth of drugs. Plus, tomorrow I get the Avastin, the drug that has only been used in combination with the FCR drugs in six other people. Wish me luck!

Until the next overly long verse….
Dave