Friday, February 29, 2008

The Nadir

Dave’s Great Adventure, Book 3
Chapter 1, Verse 6
February 28, 2008
The Nadir

When I started whining about this Kathy reminded me that I used to complain about it back when I first went through chemotherapy in 2002. I’d spend most of a week going through the infusions, then about another week recovering. I’d feel pretty crappy during all that time and we’d spend most of our time at home. And then, after I’d spent two weeks in the house and just as I was starting to feel normal again, I’d hit my nadir.

The nadir is the low point of a chemotherapy patient’s white count. I’m there now. The deal about the nadir is that when your white cell counts are extremely low, you’re also at risk for all kinds of infections from both internal and external origins. We all carry around very dangerous bacteria in and on our bodies, but generally they aren’t a really big deal because our immune systems keep them under control. We have staph in our noses, E. coli in our bowels, strep and fungi on our skin, and women have any number of very dangerous organisms in their vaginas like clostridia and pseudomonas, but it’s just not a big deal most of the time. Our immune systems are wonderfully designed to deal with these things under normal circumstances. But if the immune system is significantly weakened by something, those organisms can go wild and attack. That’s what happens to people with AIDS. The organisms that normally wouldn’t be a big deal can rise up and kill them.

This is also a time that I’m more likely to get diseases from other people, which is why Kathy watches over me so closely when we go anywhere. There is a lot of flu going around Texas right now and several people, including kids, have died of it. (If you haven’t gotten your flu shot yet, it really isn’t too late—it can help even up to April or May according to my sources.) Because of my compromised immune system we’ve been spending way too much time indoors—at home. Just to be very cautious we’ve skipped the symphony, church, and a couple of plays we had planned to go to, because I’m now one of the immunocompromised folks that could die from the flu if I were to get it. And in a crowd, you really don’t know who has it.

So I’m feeling pretty normal again, but can’t be around too many folks, I guess.

Now, Dr. Keating had given me the “no restrictions” talk regarding the chemotherapy when we met in Houston a couple of weeks ago. But that went against everything I’d been told up to that point, as I’d previously been given lots of restrictions around getting the chemo and during its aftermath, especially during the nadir. When my local doc’s nurse came out with my CBC (complete blood count) results, she told me my white cell count was pretty low, at 2,600, and that I was at risk of infection. She gave me the “fresh fruits and vegetables” talk again, the one which had caused Dr. Keating to smile at its mention. Also, my neutrophil count had dropped some more, to 1,400, lower than the low end of the normal range for neutrophils, but that’s not extremely low really. In the past I’ve had times when my neutrophils were down in the 100 range. Now that’s pretty low. In fact, just before my stem cell collection in early 2004, my neutrophil count was zero for several days and I survived. But I digress.

Medicine has been described as a science and an art. And it truly is a blend of both. In this particular situation, the science says that since my white cell counts are depressed, I’m at increased risk for infections. And that’s absolutely true. The art though is trying to decide how low is too low and what activities should be prohibited. Most folks in medicine tend to be conservative about these things, not wanting to take unnecessary risks with their patients. But others are more relaxed in their approach, not wanting to put unnecessary restrictions on their patients. It just varies depending upon your doc’s experiences and risk aversion. As an example, when my white count got down to 1,100 in the fall of 2002, my doc in Denver kept me out of the clinic and actually started me on injections of Neupogen, a white cell growth factor. But just a couple of years later, one of our nurses in the same clinic was going through chemotherapy for breast cancer and when her count got down to about 1,000, her doc didn’t think anything of it and let her keep working, bald head and all. And the Neupogen; well, it works well to stimulate the growth of neutrophils, but my docs here in Denton don’t want to use it because when it’s stimulating the growth of neutrophils, it’s also stimulating the growth of the residual bad guys too. Different places, different opinions—that’s the “art” part of medicine.

Which brings me back to the “nadir.” It’s been about two full weeks since the end of my last infusions of chemotherapy but my white count has continued to drop. That’s for a couple of reasons. Firstly, the Cytoxan has been gone since shortly after it was infused, but during its short time in my veins and marrow, it set about cutting down all the rapidly dividing cells it could find throughout my body, including white cells being newly formed. Likewise, the Fludara was targeting all the white cells it could find during the three days of infusions, so there was an immediate drop in my white count during that time. But now that the rapidly dividing cells have been “clear cut,” the white cells that were to replace my naturally and chemically dying cells aren’t in the pipeline and can’t rush into the battle to replace the ones that have been lost.

And secondly, the Rituxan and the Avastin are antibodies, as I’ve previously mentioned. They’re still hanging around, and though slowly being eliminated, they’re still doing their jobs. They won’t be totally gone until about the time for the next infusions, presently scheduled for March 10th. The Rituxan, remember, specifically seeks out and targets lymphocytes with that CD-20 antigen (the CD stands for “cluster designator” as the CLL lymphocytes grow in little clusters of identical clones in the lymph nodes) and continues to reduce their numbers.

I should have a rebound in my counts shortly, as those stem cells which weren’t killed off will be recovering and starting to make more white cells again, both of the good and bad varieties. I’ll find out how much of a rebound on Monday when I get my next CBC.

Sorry to be so didactic, but there are folks out there who crave these details. Steve, a good friend from Denver and the husband of one of my patients, said “And I always appreciate the technical descriptions along with the narrative-- it must be the engineer in me.” And Monica, also from Denver, said, “It's kind of like attending an online college course in the study of leukemia, without the exams and tuition!!” Hmm…is that good or bad? Monica and her husband Don used to bring me no-beans red Texas chili when I got sick back in 2002, and good stuff it was. It was made according to a recipe used by Don’s sister, Cindy, who tied Bobby Flay, of Food Network fame, in a televised chili cook-off not too long ago (she markets her spice mix as “Cin Chili” and it’s available at Central Markets in the DFW area and, of all places, Cosmic Chili in Bozeman, Montana, if you’d like to try her stuff...and you should!).

Speaking of didactic, I want to tell you a little about what some of the numbers I’ve been throwing around mean. I’ve mentioned that my white cell count, which includes all the varieties of white cells, was about 90,000 before we started the infusions. What that means is that in every cubic centimeter (CC) of my blood, a volume about three-eights of an inch square, there were 90,000 white cells. About 90% of those white cells were lymphocytes, so I had about 81,000 of them per CC of blood. Now, three weeks after the infusions, there are but 700 lymphocytes per CC of blood, so remarkably have the drugs sought out and specifically killed them. We’ve taken out about 97% of all my white cells, and over 99% of my lymphocytes, the great majority of which were CLL cells, but have “only” taken out about 75% of the other, normal kinds of white cells. That’s the great news. But it’s also the bad news in a way. Those normal lymphs that are being taken down…well, they make my antibodies. That’s another reason I’ll be at some risk for many months to come, even after we conclude my current round of drugs.

Meanwhile, Kathy has managed to keep me healthy with her crazy ways. I’ve told you about her wearing masks when she cooked, and spraying down the tub after she used it because she had a little cold. Well, last week I noticed a strange “scent” in the air, kind of an antiseptic smell. I tried to place it but couldn’t so asked Kathy what it was. Well, she admitted that she’d sprayed the bed down with Lysol to try to kill off the viruses she was shedding. She’s a little crazy, but, man, is she dedicated to keeping me well.

I came across a little article recently titled “Treating CLL: Optimism Not Required.” In the article it says, “Contrary to popular belief, there is no evidence that an optimistic attitude leads to a better cancer outcome. In fact, insisting on a cheery disposition when someone is struggling with a scary disease may actually do more harm than good, according to a leading psycho-oncologist.” Now, first of all, have any of you ever heard of a “psycho-oncologist?” It gives me the mental image of a guy in a white lab coat walking around the Bates Motel with a long knife in his (or her, ‘cause I’m not sexist) hand. This guy goes on to say, “The flipside of believing a smile can banish cancer is believing that a frown can cause it.”

I’m glad to hear that, because when I first found out that I had leukemia and that there was no cure, I was determined to go about my life in a way that no one would be able to tell I was sick. I was going to smile, keep up with my work, not complain, and I was going to beat the disease. Yeah, I was going to be the first! Everybody who gets cancer thinks that way, that they’re going to beat the disease even though millions of people before them, good folks with great attitudes and work ethics couldn’t.

But things didn’t work out that way. The first thing was the depression that can overwhelm you when you have found out that you’re going to die in a finite period of time. We all have an image of our life going on out before us in a path that leads to an ever-receding horizon, one we’re never going to get to. But when you get the diagnosis of cancer, especially one with no known cure, suddenly there’s an earthquake in front of you and the earth falls away, leaving you facing a cliff. And you can’t stop advancing towards it. Each day the edge of the cliff gets closer. I put my fears about this into a message to my family and friends in August of 2002.:

I couldn’t escape the depression. And in time, I found I couldn’t escape the effects of the disease and its treatment. I became weakened because of the disease, the drugs, and from the emotional toll of dealing with a lethal illness. But I didn’t want to wimp out and give up. I kept going on and on and on until it became dangerous for me to try to practice medicine, something I’ll talk about in another message. Now I find out, from this psycho-oncologist, that trying to keep a positive attitude wasn’t required and neither did being depressed hurt, at least in terms of progression of the disease. Sometimes it’s hard for Type A people to just give up and not be in charge of things, especially when they have no control over what’s going on anyway. But it’s been easier for me since I did just that. I gave up control of my disease to my docs and gave up my job because I couldn’t control the effects CLL was having on me. And I’m better off for having finally done so. Thanks, psycho-oncologist, for excusing my failures.

Say, I heard recently that Avastin has now been approved for use in breast cancer. And hopefully we’ll find that it works for CLL as well (though we won’t know that for some time). The more uses it gets approved for, the more the stock in its manufacturer is going to rise. And at $30,000 a dose, they may make some money. Hey, Genentech is calling to all you investors out there!

I heard from my step-brother/cousin Tom recently. He and his wife have retired to The Villages down in Florida. “Disneyland For Old Folks,” he calls it. He just checked in to brag about their weather and say that they’d been out in the car with the top down. Oh, yeah, he also said he didn’t really want to hear about how many tax dollars I’d been using up.

And our former neighbor Tom in Highlands Ranch, Colorado also checked in. He made an interesting offer. I’d mentioned that he had mowed my lawn and taken care of things for me while I was out of action with chemo in the past. Well, he offered to mow my lawn all the time if I’d move back to Colorado. Well, now. Maybe I can start up a bidding war or something. Say, how many of you folks here in Texas would match his offer and mow my lawn, and also, say, take out the garbage every week if I don’t move? Tom also sent another note with a more serious message. “I am really glad you are doing this for your posterity, this, your journal and genealogy will be a legacy for eternity. I mean that sincerely, it is a gift of love that probably won't be fully appreciated by your loved ones for some time to come, but trust me, it will be cherished and more than any other thing or inheritance that you might leave.” I agree with Tom, and I think all of us should write down something of our lives for our families and those that come later. I wish my dad had written down his tales of World War II. In fact, he told some stories so many times that we didn’t want to hear them after a while, but now he’s gone and we didn’t write anything down so the stories died with him. I guess that gives more ammunition to Bonnie who wants me to write that book (and a lot of you out there agree with her). But who would publish it and who would buy it?

Martin checked in to say he was in Austin for a marathon and was reading my letter on his phone. He and his brother Neil are techno-geeks and are always checking their Treo phones or their laptops for e-mail, sports news, or whatever. That reminds me; Martin’s overdue for his pap smear.

We also heard from Clovis and Phil, who were our hosts at their beautiful Alaska Wolfhouse B&B in Juneau a couple of times. We went there to recover from my stem cell collection in March 2004. Wow, Alaska in March with a bald head! Cool…literally. Some of you who have been around my scribblings for a while may remember Phil as the guy who threw his typewriter out a third floor window while in a college course. We related that episode to my problems adjusting to the addition of computers to our clinic in Colorado; I was known to damage a few keyboards and mice out of frustration. (See DGA Humor, March 11, 2004) They were wonderful, accommodating hosts and are doing well in retirement up in the small town of Connor, Washington. On our first to Juneau I found I was in good company at the Wolfhouse, as there were two other folks visiting at the same time, both with incurable cancers. Mary Lou had recurrent breast cancer and Judith had primary peritoneal cancer, a malignancy that looks and acts like ovarian cancer, but occurs in women who no longer have ovaries. I have found that, when faced with incurable disease, a lot of folks start taking care of items on their “bucket list,” as the list of things you always wanted to do before you died is fashionably called of late. Going to Alaska seems to be high on many folks’ list. Anyway, both Mary Lou and Judith fought and fought with incredible bravery, but both succumbed to their disease within about a year of our meeting. Mary Lou wrote about herself in verse, and I was getting Judith’s on-line journal fairly regularly. Judith was remarkably upbeat despite her dire circumstances, but I could tell by her descriptions of what was going on that she didn’t have much time left. Then the messages stopped. I guess, as doctor psycho-oncologist noted, a positive attitude, in and of itself, won’t keep you alive. If it would, these two brave women would still be writing.

I didn’t mean to end this on a downer, but I guess I will. Sorry.

Let me close by telling you that I’m already wondering if we can possibly complete all planned six cycles of the new chemotherapy. I pointed out that we’ve already destroyed 97% of my white cells. If the next round destroys another 97% of what’s left, I’m going to be left with not much of any white cells at all. Back in 2002, we stopped after four of six planned rounds of the FCR regimen (without Avastin) because my counts were very low. Well, we’re almost at those same levels already with only one cycle this time. The folks at MDA have told me on at least a couple of occasions that they wouldn’t have stopped when we did back in 2002, that they would have been more aggressive. I guess I’ll find out in the coming weeks how aggressive they want to be and how far we can take this process. Enough for now.

Stay tuned.

Mascot Dave

PS: Please take a few moments to look at this link:
and think what you would be saying during this talk.
(Thank you to my good friend Cesar in Miami for this wonderful message)

Monday, February 25, 2008

Honored Heroes and Small Worlds

Dave’s Great Adventure, Book 3
Chapter 1, Verse 5
February 25, 2008
Honored Heroes and Small Worlds

You know, we had really never thought about going to Kauai. I didn’t even really know where it was. Yeah, it was out in Hawaii somewhere, but with all those islands, who could keep track of them? I didn’t even know how to say it. It wasn’t until we were landing at the airport in Kauai that I found it had three syllables. I thought it was pronounced sort of like “cow-WHY” but as we landed, the flight crew welcomed us to “kuh-WHY-ee.” Just like “Hawaii,” but with a “K” instead of the “H.” And a “U” instead of the “W.” Okay, and only one “I” on the end. Other than that, just like “Hawaii.”

So just what were we doing in Kauai.

I went to college at the University of Texas at El Paso. When I started classes out there in 1966 it was called Texas Western College. That year, the basketball team won the national championship when our coach played five black players against Adolph Rupp’s white guys from Kentucky and beat them. Hollywood likes these kinds of stories and made a highly fictionalized version of the story into the movie “Glory Road” a couple of years ago. Good story, but not a lot of truth in it, just like in most movies that are “based on a true story.” Texas Western College/UTEP is still the only school from Texas ever to win the national championship in basketball.

Out in El Paso I met Kathleen Doyle. She was kinda quiet and shy, like me. We hit it off pretty well after I finally got up my courage to ask her out on a date…to a basketball game. I had thought for months that she was dating a guy named “Johnny” but when I found out that she wasn’t I gathered up all the courage I could find and nervously called her one evening: “Hi, this is Dave. Would you like to go to the basketball game on Saturday? You would? Great! Bye!” Later I was able to talk to her at greater length. And as it developed, things did indeed go pretty well.

Kathy and I were married a few years later and our marriage produced three kids. We also spent a lot of time in El Paso after we graduated from college, as I trained in and worked at the Army hospital there after medical school. Our kids loved El Paso too, and ultimately all three would also go to UTEP for varying lengths of time. So now we had five UTEP alums in the family. And then two of them married UTEP alums too, so we’re kinda inbred.

We’re members of the UTEP alumni association, have been for years. When we moved from Colorado to Texas, we joined the Dallas Chapter. We had to. Our daughter was vice-president and chief “cheerleader” and organizer for the group, keeping lots of the activities going. The other family members were in the group too, and we’d often get together to watch basketball or football games, at local venues when UTEP was playing in town, or at local sports bars when they were on TV. We’d get frequent e-mail messages from the alumni group about things that were going on. One day in late 2006 we got a message from another alum named Jessica out in El Paso.

We didn’t know Jessica, but Jessica was raising money to run in a marathon in Vancouver, I believe, in memory of her mom, who had recently died of leukemia. On her web page she had pictures of her bald mom, sitting with various members of the family, shortly before her death. Her story struck a chord with me for the obvious reasons and I sent her a significant donation. A few weeks later, she e-mailed me to ask about my donation and if I had any connection with this disease, since I’d sent more than the average she’d been getting. So I told her my story about my dad having died of CLL and that I too had it too. I found out that she was a member of the Leukemia and Lymphoma Society and was running with a part of the LLS called the Team In Training. She asked if I was a member and I wasn’t. She suggested that I might want to become an “Honored Hero” with the group and I said I might, not really knowing what the heck that meant. Next thing I knew, she had contacted someone in Dallas and an application to join the LLS as an “Honored Hero” appeared in my electronic in-box. I filled it out and sent it in.

A week or so later I got a call from a young lady in the LLS who asked me if I wanted to join them as an Honored Hero. We talked it over and it sounded like an easy enough job, involving meeting with people who were working out with the teams and not requiring too much in the way of public speaking, which can still scare me, even at my age and after all I’ve been through.

What this was all about was being an image, a real-live person, for the folks in the Team In Training (TNT) to see and identify with. The TNT folks are a fund-raising and training arm of the LLS. The TNT recruits regular folks like you and me and helps them train for events while they raise money from sponsors, friends and family. The athletes train for running and walking marathons and half-marathons, 100 mile bike rides and triathlons. Many of those in training have a personal connection with the disease, with a parent, sibling, nephew or niece or friend who has been affected by the disease. But many are doing it for the training, the adventure or just to be with friends who are doing the training. In any case, the Honored Hero program takes folks like me who are or have been affected by leukemia or lymphoma and makes them a part of the teams. That way the folks doing the events can see who they’re helping with their fundraising efforts, so it won’t be just an anonymous organization that’s getting the money they work so hard to collect.

Kelly called me a few days later. She’s one of our Honored Hero coordinators and has a personal connection, as her son, Ethan, had leukemia when he was three years old. He’s now almost six years into his remission and considered a cure. When he was ill his dad ran a marathon with TNT and as he finished the race, he gathered up Ethan and carried him across the finish line, in a wonderful metaphor. The image gives me chills it’s so beautiful. Kelly now runs marathons with TNT and has done so for years. Kelly invited me to “Kickoff,” which was coming up in a few weeks, when they would start a new season with a new crew of folks training for their events. Kickoff was going to be held at one of the larger hotels in Dallas, and Kathy and I made plans to go.

I expected that I’d meet up with twenty or thirty folks who were gathered to talk about the upcoming season. Instead I was amazed to find many hundreds of people, perhaps a couple thousand or more, and what was a huge pep rally, with lots of cheering, noise and noisemakers, music pouring out of the speakers around the room and videos going on huge screens. Introductions eventually followed, and we heard inspirational talks, including one by another Honored Hero who had beaten her disease, a lymphoma of some kind, and was herself now going into training for an event. This went on for about an hour and then we broke up into smaller groups. Kathy and I joined our team, called the DFW (Dallas-Ft. Worth) Metro Team, and this was the group I had been expecting to see, a group of about sixty or so folks. I was introduced as one of the Honored Heroes, was given a T-shirt with the TNT logo on the front and “Honored Hero” on the back, and thus began my new job.

Now, I have felt from the beginning, a little uncomfortable about being called “Honored Hero.” One of my first tasks after joining TNT was to write up a little bio for the team. In it I told them about myself and about my struggles with leukemia but suggested that “Honored Hero” was way too much title for me, that I’d done nothing particularly heroic nor honorable to deserve that name. I did the things I needed to do in fighting my disease not because I was a hero of any kind, but rather because I really had no choice in the matter. On the other hand I kind of felt that the folks on the team, the ones that were working out and raising money on behalf of folks like me should be my honored heroes. I asked them just to call me their mascot. So I became probably one of the most elderly team mascots in sports history.

The team meets a couple of times a week to get training tips, to receive a little information about leukemia and lymphomas, and to train in their event. The typical meeting times are 7AM on Saturdays and 7PM on Wednesdays. I thought that if these guys and gals were doing this for me, the very least I could do was to get up early on Saturdays and go out on Wednesday evenings to be with them from time to time. Even if I couldn’t run the miles with them, I could be out there and walk while they ran, and get to know them. It’s my new job as mascot; I bring Kathy with me and we go out to be with the team once or twice a week, and we’ve been able to meet a bunch of great people by doing so.

Neil is our running coach. He’s a lawyer who teaches at SMU and has been with the LLS for years. He’s trained at least a couple dozen teams for TNT completely on his own time. He does it for no pay, and is dedicated to the team. And remember Martin? He’s Neil’s brother and is on our team as a mentor, one of several folks on the team who shepherd new trainees along as they prepare for their events.

Last summer Martin, Kelly and several other of our teammates went to Anchorage to run in the Midnight Sun Marathon (I think it was called) at the time of the solstice. They had a great time but Martin came back from Alaska with a bunch of mosquito bites on his ankles. Martin kept scratching them and they were getting worse and worse so he saw a doc while he was in San Antonio (Martin travels a lot) to see what needed to be done. The doc saw that Martin had an infection and prescribed some topical antibiotic and steroid ointments. But the next week at training, he was talking about the scabs on his ankles that wouldn’t get better, and they were spreading. Hmm…sounds like impetigo to me, I said. I offered to prescribe some systemic antibiotics for him to treat the problem and so off we went to the nearby Walgreens to get him a prescription for cephalexin, my favorite antibiotic for lots of things.

Problem was, it didn’t help. After taking the oral antibiotics for a few days without any improvement he went to see a real doc, a dermatologist, who apparently could tell from across the room that Martin’s problem was not impetigo or any kind of infection but poison ivy! Poison ivy?! And he prescribed the appropriate meds. I told Martin that was why God invented dermatologists—to take care of things simple gynecologists couldn’t figure out. But ever since then I’ve been known to the team as Martin’s gynecologist!

The TNT has a number of differing fund raising activities. It sponsors dinners, garage sales, sells TNT items, and then has a couple of major activities each year. One of them last year was a wine tasting at a local winery in Grapevine, Texas. I know that name sounds very pastoral to the non-locals, but please don’t get images of valleys with neat rows of grape vines up and down the slopes for the town of Grapevine. It’s a neat town, but is completely surrounded by interstate highways, and if fact the grapevines of the winery we went to grow right along a freeway. But the winery graciously sponsored our party and about four hundred folks paid $25 each to attend, helping our cause. At the wine tasting we also held a silent auction, selling several hundred items which had been donated to the LLS or solicited by our members. There were meals, plane and boat rides, small electronics, beauty items and a lot more. Among the items was a certificate donated by American Airlines for a three night stay in a luxury resort on Kauai, worth $1500, travel not included.

One thing Kathy and I really like to do is travel. It’s our greatest extravagance, so that particular item got our attention. We’d never been to Kauai. So I bid and bid again and eventually won the coupon, paying about $560 or something for it. What a deal! But then we got home with the coupon and I started looking up fares, and I found that it was going to cost us in the neighborhood of $2,000 to get there and back! Not such a deal, maybe. But you know, as I’ve been asked several times by my family, “What are you saving your money for?” Indeed. We scheduled the trip to Kauai for early February as you well know by now. And there we had the spectacularly good time that I’ve described to you already, but we also had one of those “small world” experiences too.

I’ve told you all about the Marriott Resort and beach club and the fact that nothing was included in the $500 a day rates, not even breakfast. So on our first full day on the island we went across the street to look for breakfast, trying to find a little local place we’d seen an ad for. Since the cruise ships that come to Kauai dock not too awfully far from the area of the Marriott Resort, there are a lot of places in the vicinity which cater to tourists, with travel agents, tour guides, souvenir shops, helicopter rides and lots of little, or not so little, restaurants. The place Kathy wanted to go to was in a small two-story cluster of buildings with a small courtyard in the center which housed a number of these tourist oriented activities. Kathy walked in, looking intently at all the signage along the walls and above the doors, searching for the place she’d read about. A man and a woman were sitting on a bench near the entry way and Kathy passed by them as she walked in. I looked at them…and looked at them. They were engrossed in a pamphlet as they sat outside a helicopter tour agency. Finally the woman looked up, saw me and said, “Dave Eckberg?”

Man, we hadn’t laid eyes on each other in many years, and had no idea whatever that they’d be there, but there were Sheri and Bill. Sheri was a long time friend and a nurse I had worked with in the OB clinic in Denver for several years. We had gone to the wedding of one of their daughters and just missed the wedding of the other, when I couldn’t attend because of my first course of chemotherapy in the summer of 2002. Sheri had moved up in the organization and left our clinic to go into the medical computer business of the company several years ago. She and Bill were in Kauai on vacation (February is a GREAT time to get out of Denver for warmer climes) and we were there because we’d bought the coupon at the silent auction. What an amazing coincidence! They had to hurry along to catch their ride to the helicopters but we made plans to meet up again later. “Later” was that evening when we joined them at an unbelievable restaurant at the water’s edge not too far from the Marriott, a place called the Beach House which has a completely unobstructed view of the Pacific Ocean to the west. From its location the patrons in the restaurant and lots of other folks too, can watch the sunset. Apparently there were lots of sun worshippers among the crowd, as a number of the people huddling along the very narrow beach were doing Tai Chi or yoga or something as they watched the sun god Ra drop behind the edge of the Pacific Ocean. Meanwhile Kathy and I and Bill and Sheri were able to take in nicely prepared local cuisine as we watched the onset of the evening. We were able to have a wonderful time together talking about all the usual things old friends want to catch up on; family, friends, work, and how they were doing with their jobs and how we were doing with retirement. Bill and I also tried in vain to see the almost mythical “green flash” at sunset but were thwarted by some distant clouds on the horizon.

So, you see, that's what we were doing in Kauai. If I hadn’t gone to UTEP I wouldn’t have married Kathy and wouldn’t have had those three kids who also went to UTEP. Then I wouldn’t have joined the UTEP Alumni group in Dallas and wouldn’t have gotten the message from Jessica, so I wouldn’t have joined the LLS and the TNT. And I wouldn’t have attended the silent auction at the wine tasting and wouldn’t have bought the coupon for the vacation in Kauai, and wouldn’t have met up with Sheri and Bill there. Is this a logical connection? Man, the drugs are already taking over the synapses that hold my brain together.

There was a box waiting for me when we got home from Kauai, a box from my friends at the TNT. They know how chilly those infusion rooms always seem to be, and how cool the fluids are that patients have put in their veins, and how cold all that makes us during our treatments. Thinking ahead, they made up a “blankie” for me with “Mascot Dave” embroidered on one corner and “Go Team” on the other. It’s a nice plush blanket and I used it to keep warm every day of my infusions and I’ll be using it for the rest of my treatments too. These guys are great and I’m fortunate to have them, and so many other good friends, on my side. Thanks bunches guys, and we’ll see you again soon.

I just got back from the doc’s office this afternoon. My white count is still dropping and it’s getting into worrisomely low territory already. I’ll tell you the details in the next installment so don’t let your subscription lapse!

Mascot Dave

Thursday, February 21, 2008

Houston...we have a (minor) problem.

Dave’s Great Adventure, Book 3
Chapter 1, Verse 4
February 20, 2008
Houston…we have a (minor) problem

Well, you know, the problem with chemotherapy is that it whacks your immune system and so you have to be real careful to avoid crowds and sick people. And, you know, the problem with chemotherapy is that it’s given in hospitals and clinics. And that’s where crowds OF sick people tend to congregate. Heck of a deal.

When I’m doing this stuff, Kathy always runs interference for me, handling the money, opening the doors (so I don’t touch doorknobs), steering me away from any coughing she hears, giving me the hand sanitizer before I eat and stuff like that. But we still have to sit in waiting rooms. M. D. Anderson is a very popular place, but for that perverse reason just about all the folks that are there are sick, many of them desperately so. The halls and elevators are crowded with people huddled under blankets, wearing masks, wearing knit hats over their chemically balded heads, and with tubes emerging from under their sleeves or over their collars. It makes you sad to see so many very, very ill folks. In the best of circumstances, hospitals harbor many of the worst bacteria around. Having lots of sick folks there mean that lots of bad bugs congregate in hospitals. You don’t want to be in a hospital any longer than you absolutely have to be.

So my last day of this round’s chemotherapy, on Valentine’s Day, went well, but because I was not unexpectedly feeling tired, we spent an extra night in Houston (without a massage!). But by the time we got home Kathy was sick. Nothing too serious, mind you, but she had a scratchy throat, runny nose, a little cough developing, and the usual signs of a cold coming on. She was becoming the person she tries to keep me away from.

So she bought lots of the alcohol hand stuff, got some masks, made me start using a different phone from the one she used, and even tried to move into the guest bedroom. But I wouldn’t let her. She wears masks whenever she’s preparing food, wipes down the TV remote before she hands it to me and is even spraying the tub down with Lysol after she gets out! She won’t get close to me. Man… tough love!

Meanwhile, the drugs really hit me. This weekend I was pretty much down for the count. I had the “fuzzies” bad and couldn’t read the paper. I spent most of my time horizontal, either in bed or on the couch. I expected that, but what I didn’t expect was splitting headaches. I hadn’t experienced them before, but I had been getting them each day since the Rituxan infusion last Monday, and they were getting worse each day. I went through a lot of Fioricet and Imitrex (drugs for migraine headaches) but was able to get only temporary relief. I finally broke the headaches with a combination of four drugs that I’m not going to spell out for fear that someone else might take it as “doctor-recommended.”

A few other things happened too. I’ve been slightly hoarse since about day two of the infusions, but that tends to happen after the steroids and all the fluids I get. But it just hasn’t disappeared yet. Maybe a touch of Kathy’s cold? And whereas I generally gained about 12-15 pounds with each infusion in the past (between all the steroids and fluids), and even needed special jeans for my “fat” days, this time I’ve lost about six pounds, at least partially because the miserable headaches put a damper on my appetite for several days. But I can stand to lose a few pounds.

Folks often ask about the side effects when I’m undergoing the infusions. Let me mention a couple more, one of which I don’t have. First, I’m not losing my hair this time. I may lose some with time, but the last time I did the FCR regimen in 2002 (without the Avastin) my hair thinned a bit but I didn’t go bald.

And the Zofran, the miracle drug I told you about that is so great for nausea that I was able to eat my Ruggle’s burger and follow it with crème brulee…well, it does indeed work great. It quiets the gastrointestinal system so very effectively that nausea is eliminated. But it works so well that, uh, elimination is eliminated too. Food doesn’t come up, but it doesn’t make progress toward the, the…nether aperture either. I guess when my pregnant patients, to whom I gave Zofran, complained of constipation, I blamed it on the pregnancy and Denver’s dry climate, which were certainly factors in the problem. But I’m guessing that the Zofran didn’t help at all. It’s not a problem that commonly affects guys, seemingly being more of an issue for with the gentler sex. Seems many women get it when they travel…don’t know why, but they do. Anyway, it’s not a problem I’m generally familiar with, but one that I resorted to a little milk of magnesia to take care of after I started to get pretty uncomfortable. Good old MOM.

For all my whining, though, the side effects of my chemotherapy cycles have been far less than those folks getting drugs for breast cancer, most lymphomas, and many gastrointestinal cancers. Those folks can be just deathly ill with nausea and vomiting, weakness, mouth ulcers, diarrhea, extremely depressed immune systems and white blood cell counts and so much more. I have much to be thankful for.

I went in to our local clinic on Monday to get my first post-infusion complete blood count (CBC). I was blown away to hear that my white count, which had been about 88,000 before we started, was down to 3,100! My gosh, after only one of the six planned infusions we have destroyed 97% of the white cells that had been flowing in my veins. And what is more amazing, really, is that of the 3,100 white cells left, most of them were bacteria fighters, the neutrophils. In other words, the chemotherapy had effectively targeted the bad guys but spared most of the good guys. That’s because of the Rituxan.

[WARNING: TECHNICAL STUFF FOLLOWS] Rituxan is one of a whole new category of drugs. It’s not even chemotherapy, in some ways, because it’s an antibody; a murine (or mouse) antibody, believe it or not. (Many of my friends who have followed my adventures for years have heard this before, but there are many new folks out there now whom I’m just dying to bore with the details.) It’s an antibody against what’s called the CD20 antigen, a protein that appears on the cell membrane of all CLL lymphocytes. Now, when you get a flu shot or a tetanus shot, you’re getting a bit of the foreign protein (the antigen) of the tetanus or flu and so your body produces antibodies to the germ, virus or toxin. Then, when your body encounters those things in your blood stream, the antibodies glom onto it and allow your white cells to destroy it. So that’s what Rituxan (and Avastin, too) do and why they work so well. The Rituxan antibodies coat the leukemic cells (but not the bacteria fighting neutrophils) and then my immune system destroys them. Cool!

A couple of problems present themselves, however. First, most normal lymphocytes have some, but not as much, of the CD20 antigen, too, and they may get taken down with the CLL cells. And secondly, the other drugs that are given with the Rituxan, the Fludara and Cytoxan… well, they work well, but they damage my immune system, the same immune system that’s supposed to be taking out the CLL cells after the Rituxan coats them.

Most chemotherapy works by attacking rapidly dividing cells, on the theory that cancerous cells are dividing more rapidly than normal cells. Cytoxan is a great example of that; it’s the old fashioned “bombs away” drug that clear cuts through the body, slashing and burning all rapidly dividing cells. But it also gets rapidly dividing cells in the stomach, mouth, intestines, etc. And it kills off lots of the cells from the immune system which are also trying to multiply rapidly. And Fludara is just about as bad. It’s derived from a chemical that was found in the bloodstream of the “bubble boy” who had a complete immune deficiency. He had this chemical which was destroying his white cells, and hence his immune system. They’ve synthesized it and now it’s used to kill off abnormal white cells, but it, too, takes out many of the good guys.

But by balancing the amounts of the Cytoxan, Fludara and Rituxan, they’ve found that they work very, very well together, better even than they work individually, and don’t completely destroy the patient’s immune system. But, my immune system will be compromised for many months, or even years, after we complete my therapy.

I am very happy with our experiences at MDA. They have a very competent and extremely knowledgeable staff. Before each infusion they showed me the drug they were giving, told me the dosage and compared the name on the IV bag with my armband. And they’re quick! Since they use so much less in terms of fluids during the infusions, the infusions go by much faster. Our last day there the drugs only took 90 minutes to flow in. Not even enough time to read much of the material we’d brought with us. We brought a lot, because in the past we’d spend hours and hours getting the drugs. Didn’t need it! And because we’d been getting up (and by “we” I mean “Kathy”) at 5:30 AM (I’d make it out of bed about thirty to forty minutes later) because I had 7:15 appointments to get blood drawn, we slept through most of the procedures anyway.

Plus, the staff at MDA is finely tuned to their patient’s needs. While I was getting my infusions and couldn’t get out, staff members came around taking orders for meals, at no additional cost. And another person, likely a volunteer, came around offering hats to us and the other “soon to be bald” patients; knit caps, baseball caps and more. Another volunteer walked in one day and just asked if there was anything she could do for us. Like many of the volunteers, she had a personal connection, her husband having been treated there as well. She brought us something to drink as we hadn’t had much yet that morning.

It’s not a perfect place, but it’s good. I think they could do a better job of coordinating blood draws to minimize the number of needle sticks folks get (I got five one morning alone) and their staff varies a little in competence and diligence, as it will anywhere. One morning, when I was getting my Rituxan, my blood pressure and other “vital signs” weren’t checked for three hours, when I know they were supposed to be checked every fifteen minutes for the first couple of hours. But I was feeling okay and didn’t raise the issue with the nurse. I suppose I should have.

But we’re finished with MDA for a while. If all goes as expected we’ll get at least the next two courses of chemotherapy here in Denton, following instructions provided by Dr. Keating and his crew. I’m due back in Houston no later than May, however, for a follow-up visit and another bone marrow biopsy.

This has gotten longer that I had intended, and I haven’t gotten around the Kauai story yet. Next time…I promise. And some more feedback about this stuff too, okay?

I’m feeling much better and my appetite has returned. Our friends Bonnie and Quinn brought me some hot wings, so my post-chemo need for spicy foods has been assuaged for now. And it was a great day on Thursday with temperatures in the low 70s so I was able to sit out on the patio and enjoy the sun. Except for my wife warning me not to get too much sun. You see, I’m photosensitive while undergoing chemo and can burn more easily. Not only that, but I’m more prone to get skin cancer because I have leukemia. Kathy watches out for these things when I don’t. All in all, I’m doing very well and hope to get out of the house in the next couple of days.

That’ll do it for now. Thanks for all your messages and feedback.


Saturday, February 16, 2008

Lucky Number Seven

Dave’s Great Adventure, Book 3
Chapter 1, Verse 3
February 16, 2008
Lucky Number Seven

You know, I didn’t really plan on being an experimental model, a “lab rat” if you will, as I was explaining to Martin recently. Martin is a friend from the Leukemia and Lymphoma Society (LLS). He’s a marathoner and also trains others to run marathons to raise money for the LLS. I’m his gynecologist.

It appears that I'm to be a guinea pig for new treatments for chronic lymphocytic leukemia. I'm not sure how I got this role, but it has come to me. I suppose someone has to be among the first to try new things or there wouldn’t be any progress in anything, would there? When I first became ill back in early 2002, there was no agreed upon “best” treatment for CLL nor any general agreement even on if or when to start treatments, since survival wasn’t generally extended even with many of the available treatments. As most of you know, my dad died after having this disease for about five years.

But I was “lucky” enough to get sick at the right time. I got sick while living in Colorado, in late February 2002 and met my oncologist, a great guy named Brian Koester, a month later. He had just read an article about some new treatments which had been tried down in Texas at a place called M. D. Anderson, and they were reporting fantastic results. The lead investigator for these studies was a doctor named Michael Keating. The experimental trials had been performed on, I think about 130 people down in Houston, and the results looked so promising that Brian said we ought to try them on me too. The new combination of drugs used Fludara (fludarabine) and Cytoxan (cyclophosphamide), which had been around for many years, with a new and unapproved (at least for its use in leukemia) drug called Rituxan (rituximab). Rituxan had been approved only for use in patients with lymphomas. This combination of drugs has come to be known as FCR.

So, Brian photocopied off the regimen that Dr. Keating and his crew had brewed up and he gave the orders to his nurses. And for the first time in Brian’s experience and for probably the first time in Denver, the FCR treatments were used. On me. And the results were just great. Within four months I was in complete remission. I was ecstatic at that, but the joy was relatively short lived, as we found the disease was slowly returning about a year later. We probably didn’t use the regimen long enough, as it turned out.

So Brian sent me to a colleague named Jeff Matous, down the street, who is a “transplanter.” We decided that while the disease was at a relatively low level we’d try to collect some of my own stem cells to use in the future when I had otherwise run out of chemotherapy options and might need a stem cell transplant. Jeff used a much higher dose of Rituxan, given several times over a couple of weeks, combined with a very large dose of the Cytoxan, to “clean out” my bone marrow before we collected a bunch of my own stem cells. One day during the process, which took us a few weeks, I asked Jeff if things were going as expected. He said, “I don’t know…I’ve never done this before.” But it did go well, and I now have seven million of my own stem cells in a freezer in Denver, awaiting the day that I might need them (the use of one’s own stem cells is a bit controversial, and in fact does not generally work as well as using a donor stem cell transplant, but it’s an option that I can consider, and is a topic for another day).

Now, six years after Brian tried Dr. Keating’s regimen and four years after Jeff tried his new combination of drugs on me, I find myself at M. D. Anderson Medical Center, the very place at which the FCR combination was perfected, and being cared for by the doc who led the group who designed it! Talk about being in the right place at the right time. Now it’s time to try something new again, and Dr. Keating is the one trying the new stuff.

I’ve told you about the new stuff, the Avastin (bevacizumab—“beh-vah-SIZZ-oo-mab”) and all of its possible side effects. I’ve even been a bit uneasy about trying it because of all I’ve read about the “severe and sometimes fatal” complications. I was talking about this with Martin, whose dad had pancreatic cancer and was treated at M. D. Anderson with Avastin. His dad developed appendicitis after his Avastin therapy and died shortly thereafter. But pancreatic cancer is an extremely aggressive tumor and survival is generally measured in a few months even in the best cases. It appears that Avastin is reasonably well tolerated by otherwise healthy folks, and it’s hoped that its addition to the FCR regimen will keep me going for a few more years. This combination has been tried on six other folks recently and so far, in the short term, they’re doing well. I’m number seven.

This is extremely expensive therapy. To me, it’s outrageously and embarrassingly expensive. The Rituxan (rituximab) alone costs several thousand dollars a dose (you might want to buy some stock in its maker, Genentech). The single four day course of therapy I’m getting, including everything, will cost in the range of $80,000 to $120,000, according to my nurses, though I haven’t seen any bills yet. And (this is an important “and”) that’s before the cost of the Avastin is added in. Right now, since this is an investigational study, the drug company is paying for the drug, which costs about $30,000 PER DOSE! (That’s another reason to invest in Genentech!) By the time I hopefully complete the six months of the study protocol it will have cost way over half a million dollars. I just find that to be incredible. Now, I’m not paying that out of MY pocket, but someone is, and in my case, it’s all of you! Between my military retirement benefits and Medicare (which I suddenly found I was going to be included in, starting in March) the taxpayers of America will be picking up my bill. Think about that on April 15th when you file your income tax return. Your tax dollars hard at work! And thank you very much.

But it seems to be working well. Before we started the therapy, Dr. Keating said, to his team, with his New Zealand accented English, “Okay, let’s get him into remission and then we’ll work on the cure!” And off we went, to the infusion room. Before I started the first day’s infusion, my white cell count was about 88,000 (remember that a normal count is somewhere between 3,000 and 10,000). Monday, on the first day of therapy, I got only the Rituxan. The infusion went well, and by the next morning, my white count was only 34,000! So the second day I received the Fludara and Cytoxan infusions and the next morning the count was 17,000.

Well, on day three I was going to receive the Avastin. It was given along with more Fludara and Cytoxan. They hung the IV bag with the Avastin in it and ran it into my vein. I felt…nothing. It could have been a placebo for all I could tell.

I was feeling a little spacey, but not sick, after the drugs so Kathy and I went out for lunch. We found a little place not too far from M. D. Anderson called Ruggles, sort of an upscale burger and sandwich shop and we each had a burger that was way too big, but tasted great. We can recommend Ruggles. I’ve never yet gotten nauseated from the infusions of the drugs I’ve had, probably because of the wonderful anti-nausea drugs that are routinely given in recent years. In Denver I was given Anzemet and “tested” it frequently. Long time readers will remember my frequent stops at Mexican food places on the way home from my infusions. At M. D. Anderson I was given Zofran, a drug I often prescribed to my pregnant patients who had intractable nausea and vomiting with their pregnancies. Both drugs work extremely well.

So, thanks at least in part to the Zofran, I was able to enjoy my burger, and Kathy surprised me with a crème brulee for dessert. When was the last time you got crème brulee at a burger place?

The next day was the last day of my infusions for this cycle. It was also February 14th. Kathy had a Valentine for me. I didn’t have one for her. Now guys, you know it’s never going to be a good day when your wife remembers a birthday, anniversary or Valentine’s Day, and you don’t; am I wrong? I felt bad about it, but Kathy was very understanding, given the circumstances. We HAVE had other things on our minds, recently (though she was still able to plan ahead and my male brain couldn’t!).

We went in for my pre-infusion labs and found that my white count was now down to 10,000. Amazing, isn’t it? We had the infusions over about 90 minutes and were done for the day. I was feeling crappy though, a feeling that had been slowly building over the four days. And the headache that started on day one, after the Rituxan really had never gone away. But these feelings are caused by the destruction of millions of white cells, and each one is pouring out its contents into my bloodstream, just as they do when they’re trying to fight off the flu or something, and that’s exactly how I felt. We went back to the motel and I slept for most of the afternoon. That night I was still achy and couldn’t sleep well, but I know it’s because things are going as they should. End of Round One.

We heard from lots of friends and family recently after I resurrected my “adventure” series. Our long time friend, Kathy, out in Hotlanta (or is it Drylanta now?) opined that even though I didn’t have the restrictions placed on me that I had in the past, maybe it would be safer to go ahead and follow the old guidelines. She said, “Although they said no restrictions, think I would go back to what I did before. NO fruits, (lots of) water, etc. Okay, maybe some SEX.” Hey, Kathy has her priorities right!

And we got a very nice message from our former neighbor, Tom, in Colorado. Tom and his wife were just fantastic folks to live next to. When I was doing my chemotherapy infusions, he’d come over and mow my lawn and take care of things for me. One time, during a round of therapy, I started feeling reasonably well, so I went in to our clinic to see a few patients. I was embarrassed when I came home to find out that Tom’s wife, April, was mowing my lawn while I was out gallivanting around!

I heard, too, from a good friend, Shara, also in Colorado. Shara was a patient of mine for many years, and famously (or notoriously) said at one point, “We need to find some time to get together outside the clinic so I can talk to you with my clothes on.”

Bonnie wrote to say that it was a good thing that things had changed in the last six or so years, and that I was getting less in the way of drugs than before. Bonnie is quite a gal. She’s a neighbor and friend, but she’s also an artist, sculptor and a writer. And, in “retirement” she has become a professional photographer. She’s also the only person I know of who has read through my whole story, from start to finish, other than my long- time friends and such relatives who have been subjected to it, piecemeal, since the beginning of this “adventure.” Bonnie said, “Like a great book, I couldn’t put it down!” Bonnie says I should write a book. No, actually Bonnie INSISTS I write a book. But, that sounds like a lot of work!

Our dear friends Lou and Joan, up in Golden, Colorado, are also staying in touch. We got daily e-cards from them during our time in Houston. That’s just so much like them. When I was out of work for about seven months back in 2002, getting and recovering from my first rounds of chemotherapy, they sent a card in the mail, every single day for the whole seven months! Get well cards, friendship cards, funny cards, etc. Really, really nice folks.

One last thing before I close this “verse.” While we were in Houston we stayed at a very nice Holiday Inn Express near the hospital, a very well-kept and modern facility. There was, in our room, a brochure. It advertised “Emergency Massage.” Yeah, “emergency massage.” “Call Veronica at 713-591-xxxx for your stress management.” You can get Therapeutic Massage in 30 minute blocks, a dollar a minute; “A magnificent blend of soothing bodywork techniques specific for your needs to help increase circulation, promote relaxation and improve sleep patterns.” Now, guys…what kind of "bodywork" techniques “specific for your needs” best increases your circulation, promotes relaxation and puts you immediately to sleep? Yeah, I thought so. (This all reminds me about what happened when we were in El Paso for our son’s wedding and I was having horrible neck and back pain. We saw that a massage therapist was on-call and so I went for a massage in the motel! If you care to, you can read all about in the entry from September 1, 2004. It had my daughter and my female friends and patients rolling with laughter.)

Enough for now. Next time I’ll tell you how we came to be in Kauai recently and how I became Martin’s gynecologist. There is actually a long and convoluted story tied into my disease that accounts for both. And I'll tell you about my blankie, too.


Tuesday, February 12, 2008

From Paradise to Poison

[Please look at and, if you care to, bookmark my journal at You can also subscribe to the updates with the “Subscribe to: Posts” at the bottom of each page so as to automatically receive any new “adventures” that I add on]

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….

Sunday, February 3, 2008

Book Three, The Adventure Starts Again

Dave’s Great Adventure, Book Three
Chapter 1, Verse 1
February 3, 2008
We Have A Plan!

Well, I guess we have a plan as to what to do next.

It’s been almost four full years since I had my last chemotherapy, in the Spring of 2004. That’s the time that I lost my hair, pulled the tube out of my chest and had the RSV infection, among many interesting missteps in getting the drugs at that time. Some of you long time “subscribers” to these never-ending messages may remember the trials I went through with that treatment regimen. But it has worked well. I never expected to be able to go so long between rounds of treatment, and am very glad that it has been as long as it has. I guess my “mutant” status can be credited with the slow progress of my leukemia and the length of time I’ve been able to go between infusions of poisons.

It’s been so long that Kathy and I have been able to put this dread disease out of our minds sometimes. We kinda forget about it and think that everything is normal and as it should be, and that we can live our lives like everyone else. But then I get a blood test, as I have had to do every two to three months, which shows my white count getting greater and greater and we’re reminded that everything is decidedly not normal.

My white count at the first of this year was about 17,000 or so, higher than normal (which is about 3,000 to 9,000 or so), but not too bad for a leukemic. And that was almost three years after my last infusions of Rituxan and Cytoxan. As I’ve mentioned to many of you over the last couple of years, we’ve been watching things but not treating anything because my white cell counts have not been worrisomely high, and because there STILL is no agreed upon standard as to what treatments are most appropriate or “best” for a patient with previously treated and relapsing CLL.

We’ve been talking for over a year about trying gene therapy, but I guess that’s not going to be an option. I don’t know details yet, but it looks like the protocol we had planned on trying, to “immunize” me against my own leukemic cells, isn’t panning out. Not sure about that yet, but if I get more details, I’ll pass them on. Anyway, in the last year my white count has gone up to 100,000. That’s much higher than any count I’ve ever had in the past, but still not all THAT high for a leukemic. Some patients walk around with counts of 200,000 to 300,000 or so.

But in addition to the increasing white cell count, I also now have enlarging lymph nodes, mostly under my arms, where I have a couple of one inch (2 ½ cm) nodes. I never had any of those before. But other than that, I still feel relatively normal for me. Just some lingering fatigue to remind me that I’m sick.

But at a count of 100,000 white cells, most folks agree it’s time to begin treatment of some kind. So we went back down to M. D. Anderson, Houston, to see my doc again to see what he’d recommend.

M. D. Anderson’s a great place for a person with leukemia to go, because, whereas most patients with my disease see a doc who specializes in hematology and oncology (blood diseases and all cancers), when I go to MDA, I’m seen in the Leukemia Clinic by a Leukemologist, a specialist who treats nothing but leukemias. The clinic I go to doesn’t deal with breast cancers, bowel cancers, brain tumors or anything else except leukemia. I find that amazing and reassuring. In fact, the folks down there(including my doctor there) developed the Fludara/Cytoxan/Rituxan (FCR) therapy which I originally had back in 2002, when it was hot off the press and my doc in Denver decided to give it a try with me.

Anyway, they have a lab that is open seven days a week so that their patients can get blood drawn on weekends, which is great, because if you don’t get your labs drawn on the weekend before you see your doc, you have to get up early on the day of your appointment to get them drawn. I’m getting too accustomed to sleeping in to want to get up at 6AM to get a needle poked into my arm. So I got my blood drawn on a Sunday evening after we got to Houston.

We got into the clinic right on time, of course. No, really, we got there early. When I’m with Kathy we NEVER get anywhere on time. We’re always early. Anyway, that got us into the doc’s office on time or a little early. His nurse went over all the usual questions, and then his nurse practitioner did an exam and asked more questions. She noted the enlarged lymph nodes and my greatly elevated white count. She said, “I guess we’ll need to start treatment now, but I guess it won’t be gene therapy.” I knew that already, from conversations with my doc here in Denton, but still didn’t know why.

She stepped out and shortly thereafter Dr. Keating came in. We got the now-familiar bear hugs and sat down. His first words were, “Are you ready to get back into remission?” He told me that he’d like to put me on a study protocol of the FCR (which his team had developed back in 2001/2002 time frame) plus add the new drug, Avastin, which I mentioned in the previous message. Avastin is “vascular endothelial growth factor inhibitor” or VEG-F. VEG-F is a factor in the blood that promotes the growth of blood vessels. Its inhibitor, Avastin, is used in the treatment of many malignancies because most malignant tumors require lots of new blood vessels to support their rapid and abnormal growth. By blocking the formation of all the new blood vessels to the tumors, Avastin slows tumor growth and facilitates and augments the use of other chemotherapeutic agents.

(Man, this is my first “DGA” in a few years and I’m already deep into medical stuff! Sorry.)

Anyway, though it is widely used in bowel cancers, lung cancers, pancreatic cancers, and more, it has a significant incidence of side effects and complications. I also mentioned these in my previous message, which many of you seeing this have not yet received (more about that in a bit). Among the potential complications are things like, “…serious and sometimes fatal hemorrhage…” and “serious and sometimes fatal bowel perforations have been reported…,” And more! I’ll refer you to the previous message for all the myriad details of what can go wrong. So, I was concerned, firstly, with the serious complications that have been noted, each one with an incidence of 1-2% or so. Those add up to serious numbers in a hurry when there are several of them that can happen.

And secondly, I wondered why a drug designed to inhibit the growth of abnormal blood vessels in tumors was even suspected to be of any utility in leukemia, which is not a solid tumor. Well, the answers are that, regarding the many complications, they are seen primarily in patients with the solid tumors which are eroding into lungs, bowel, etc., or who have active diverticular disease of the large colon. In these conditions there can be a lot of inflammation and if the lesions can’t heal, because the Avastin prevents the growth of blood vessels to the area, then bowel perforations and bleeding can result.

However, though leukemia is not a solid tumor, being mostly a collection of abnormal white blood cells (lymphocytes) in the marrow, spleen, liver, etc.), it turns out that for leukemic cells to survive in the body they require the presence of “nurse-like” cells in order to survive. In the absence of the nurse-like cells, the leukemic cells die within about three days. So the theory is that the Avastin will prevent blood from reaching the nurse-like cells in the marrow, spleen, etc., and thereby hasten the demise of the CLL cells gathering in these organs.

So, recently a study showed that the FCR regimen, which I mentioned above, is probably the best thing going for relapsed CLL, and that there is reason to believe that Avastin might make the results even better. You need to know, however, that this new trial combination of drugs has been tried on only six other patients so far. I’m Lucky Number Seven in the new list of patients!

Now, my doc here in Denton was not at all in favor of me doing the gene therapy, which I really wanted to do, but he is conversely very much in favor of the Avastin. “It’s a wonderful drug.” he said to me. So I have to believe that I should give it a try and hope that I don’t have any major accidents or require any surgery while I’m on the stuff, ‘cause if I do, I won’t heal very well. Remember that the Avastin, which hangs around for about three weeks after each infusion, inhibits the growth of new blood vessels, which are, of course, required for healing.

Dr. Keating feels that as well as I did with the first rounds of chemotherapy in 2002 and 2004, I should do well for several more years after this regimen of medications. And then he said that he predicted that they’d have a cure for the disease in about five years, about the time I might need more therapy. “That would be nice,” I replied. “No,” he said, “that WILL be nice.”

So, I got signed up for the new trial medication, signed the “informed consent” agreeing that I knew what I was getting into, and thought I was done.

But no. The research nurse, Susan, said I hadn’t had a bone marrow biopsy in a while and I needed one before we started. Man, I’d hoped they’d forgotten about those. They are done by drilling into your hip with a needle about the size of a ball-point pen refill, and suctioning out some marrow before going deeper to get a “core” of marrow. They aren’t fun, but I’ve had five of them and, well, have gotten used to them, I guess. In Denver, however, they would typically put in an IV with “feel good” drugs for the procedures. I had heard that at MDA they didn’t take the time for such niceties, instead depending upon local anesthetics to do the job, but that they did a good job at it.

And that turned out to be absolutely correct. The bone marrow aspiration clinic at MDA does about 70 of these procedures a day! Where I was in Denver, they did perhaps two or three daily. The folks at MDA have become very, very skilled at what they do. In fact, they don’t even have doctors doing them. They have nurses or technicians (I’m not sure yet what they were) doing them. I was a bit worried, but it turned out that the procedure itself was not our problem that day; the schedule was.

I was scheduled for 2:30 that same afternoon. As you know, we ALWAYS get to our appointments early. So, after we had lunch at MDA (they have a whole food court in the hospital, not just a typical hospital cafeteria: a burger grill, sushi, BBQ, Chinese, home cookin,’ deli sandwiches, etc.) we went to the clinic. We thought that if we got there early we just might get in for the procedure early too. So we showed up at 12:30 for our 2:30 appointment. Man, the place was packed! The chances of getting in early didn’t look good, and in fact they weren’t. I got in for the biopsy at about 5:10PM after sitting in the waiting area for almost five hours. But that’s not a problem…we’re retired and had nowhere else to go.

The biopsy was just great, if I can use that term for an invasive procedure that no one looks forward to and most folks fear. Despite the lack of any IV drugs, the biopsy was the least painful of all my biopsies. It turns out that they use lots of local anesthetic (they told me they use 10cc of the stuff) and wait until it’s working well. They did a good job. It hurt less than your average flu shot,…really!

So, we’ll be going back down there on the 11th to start Round Three of chemotherapy. If it goes well, we’ll be doing four days of infusions every four weeks for six months. However, I can get the last five infusions here in Denton at my local clinic. I have much more to tell you…but I’m sure you have read enough for now.

Speaking of having enough to read, I’m going to start doing the DGA letters in blog form this time, and have uploaded all my archives for those of you who haven’t yet been subjected to my many rambling thoughts about my disease, about death and dying, and the many humorous stories that made their way into my letters.

I’m not totally happy with the layout of the blog yet, because the entries read from bottom to top in each section, and am still working on it, but if you have absolutely nothing else to do, Books One and Two are at:

You may feel free to pass this along to any family or friends that may be at all interested.

The first 20 or so entries in 2002 are e-mails I was sending to my family before I even knew I had leukemia and discuss the possibilities of what I was facing show my fear and anger at finding out what I had, and then mention the many treatment possibilities including dealing with trying to find a matching donor for me. The journal entries actually start with the entry of July 22, 2002 and record how the treatments went, the funny things that happened along the way and many depressing and deep ramblings about what it feels like when you think you’re dying. You can “subscribe,” if you’d care to, by clicking on the link at the bottom of each page. Or if you’d rather, you can bookmark the site and just check in from time to time. Note that I’ve found that when I get my recent entries sent to my own mailbox they show up (appropriately, perhaps) in my Bulk Mail or “spam” box.

That’s it for now. Much more later….