Wednesday, March 5, 2008

Of Anniversaries and Life's Celebrations

Dave’s Great Adventure, Book Three
Chapter 1, Verse 7
March 5, 2008
Of Anniversaries and Life’s Celebrations

We all celebrate anniversaries of various types. Some are national anniversaries, like the Fourth of July or the remembrance of D-Day, and the like. But most of the anniversaries we celebrate are more personal. The one we most commonly celebrate is our birthday, for if we hadn’t survived that trip into our world we wouldn’t have the annual gathering of friends and family with the cake, candles and gifts, and the ritual of having songs sung badly to us, sometimes with references to monkeys and zoo smells, too.

And there are other anniversaries. The anniversary of the start of a job, when you might get a small raise in pay, or the anniversary marking many years at that job, when you might be able to hang it up and retire. And there are the dates we remember because they are special only to us; the memory of a first date with our future spouse, or the time we moved to a far-off place (“Omigosh, has it really been twenty-six years since we moved to Frankfurt?”), or more importantly, the remembrance of a wedding anniversary, a most important date that husbands fail to remember only under pain of icy stares and a curt “Nothing” as the answer to the question, “What’s wrong?”

I was reminded of anniversaries again this week. I joined many of our teammates from TNT at a couple of training sessions, staying distant from those who were sniffling or coughing. Kim is one of our teammates and was there. As of a couple of weeks ago she is three years out from her treatment for a lymphoma and celebrated a clean bill of health from her doctor, still having no signs of the disease. The team threw her a party, for few things are more important when you’ve had cancer than the celebration of your victory over that disease. And I also saw Ethan this Saturday morning at training near Grapevine Lake, where the team runs each weekend. Ethan is nine years old and is about to celebrate his sixth year in remission, after having been treated for leukemia when he was but three years old. He’s doing just great.

Ethan and I share a sixth anniversary. That Saturday when I was out with the team marked almost exactly six years since I found out that I had leukemia. Our anniversaries are a bit reversed however, as he’s celebrating six years of being disease free, whereas I’m celebrating six years of having the disease. Now, you might not think of that as something you’d normally want to celebrate, but to me it is. You see, when I first saw my oncologist back in early 2002, he told me the average survival with my disease was about six to ten years. Pessimist that I am, I zeroed in on the six year figure, figuring that’s when I was scheduled to die, in 2008. Many of the things we did subsequent to my visit with my doctor were based on that assumption, including moving to Texas to be near family and buying a home in a retirement community so Kathy would have built-in friends, neighbors and activities when I died this year.

I’ve spent my anniversaries with ups and downs in the course of managing my disease. On my first anniversary, in 2003, I was in a great remission, after having completed four cycles of the brand new FCR (Fludara, Cytoxan and Rituxan) chemotherapy regimen. But by my 2004 anniversary, I had started to relapse and underwent more intense chemotherapy and a stem cell collection. 2005 was good. I was in remission again, but found out six months later that I was relapsing yet again. The 2006 date was marked by watching my white count slowly climb, though it was doing so very slowly at the time. By 2007, however, it was starting to climb more rapidly and it was time to do something. So, on my 2008 anniversary, I’m celebrating six years of living with this disease and doing just about as well as one can do when you have leukemia. I’m still alive and death is apparently not imminent. And I’m celebrating being able to try out a new course of therapy for my disease. And just what should I do to celebrate this anniversary?

Our younger son asked why we were doing the FCR again, when I had relapsed within a year of finishing using it years ago. Fair question. First of all, there is a small subset of folks who have been given the FCR and seem to have been cured. Years after their treatment with this regimen, they have no signs of the disease and even very sensitive testing shows no molecular evidence of CLL. The folks at MDA have told me on several occasions that they think we stopped too soon when we quit after only four cycles back in 2002, the implication being that I might have had a longer remission or even achieved one of those possible cures if we’d been more aggressive. Further, the testing of this regimen against other “standard” treatments for relapsed CLL shows that it has become the best available regimen, achieving the longest remissions.

So, on this anniversary we’re using FCR again and, as noted multiple times, adding the drug Avastin to the regimen. It’s important to remember that the Avastin has not been used in CLL before and its addition to the FCR is not designed to effect a cure, but rather to hopefully help me get into a deeper and more durable remission, during which time a cure may be found. Remember that Dr. Keating has sort of “promised” me a cure within my lifetime.

Meanwhile, things are going sort of as expected, but not really according to plan. My white count dropped dramatically after my first series of infusions, as I’ve previously reported. That’s what the chemotherapy is supposed to do, but the white cell numbers dropped further than I, and apparently the staff here in Denton, expected. The low point, or nadir, is generally about 10-14 days from the infusions. So, we were expecting a “bounce” in my numbers this week, which is now three weeks from the start of my infusions in Houston. Surprise! My numbers are continuing to drop. My white cell count as of Monday was 2,400 with only 900 neutrophils. Remember that I had about 1,400 neutrophils last week. Therefore, most of the drop in the last week was in neutrophils, which are the white cells we want to protect since they kill off the bacteria that surround me at all times and attempt to invade my body every day. This continued drop is likely an Avastin effect.

With that low count, which was done by cell-counting machine, the lab followed up with a more accurate manual count, just to be sure of what was going in. The manual recount (sounds like election stuff, huh?) came up with a neutrophil count of only 360!

That low count apparently triggered some phone calls to Houston and discussions about the next step. It first of all is hard to imagine giving me more chemotherapy when the first round has damaged and depleted my marrow so extensively already, yet I’m scheduled to start again next Monday, the 10th. Secondly, if I get more drugs starting on Monday, should the doses be reduced? And lastly, should I be given injections of white cell growth factors (Neupogen) to help bring my neutrophil count back up?

Last things first. I mentioned the white cell growth factor in my last letter. I’ve had it in the past, when my counts were very low, but the use is controversial, because though the drug is designed to stimulate the growth of neutrophils (good!) it can also stimulate the growth of CLL cells (obviously counterproductive). But first I need to survive the treatments. So, the “art” of medicine came to the fore again, trying to balance the good and the bad, and as of Wednesday I’m getting shots of Neupogen daily, for at least a few days (at about $400 a shot). We’ll see what my counts are doing by the end of the week when I see my doc in preparation for the next round.

And the folks at MDA said that, no, they wouldn’t stop the infusions or reduce the dosages if my counts are depressed but they would consider waiting longer between rounds of infusions. We’ll have to wait until next Monday to see if my white counts have recovered enough to continue for now, or whether we need to wait a few days or a week or more. Stay tuned, as this might get interesting.

I received a number of nice messages from friends and family after my last letter. Our neighbor and good friend Bonnie checked in with a question about whether I was sharing all my self-medication regimens with my docs. Good question. They’ve asked about every single thing I’m taking; supplements, baby aspirin, Motrin, calcium, Imitrex, etc., so they know about all the drugs I might use, but I hadn’t told them specifically what combinations I use on occasion, like when I had the miserable headaches after the first round of infusions in Houston. Speaking of which, I recalled having a similar situation with horrible headaches at some point during my first round of FCR and needing more than usual amounts of drugs to knock it out. I looked through my old letters and found that I had just about the same reaction and took just about the same combination of drugs just after my first infusion of just FC back in July 2002, even before I had the Rituxan. So, I can’t blame the Rituxan but rather the destruction of billions and billions of white cells for that lousy headache.

In the last letter I told you I’d heard from my step-brother/cousin Tom, down in Florida. Nobody even asked about that tangled, hillbilly description of our relationship. Well, just to make things more interesting, this week I heard from Charlotte, up in Iowa, who is my double first cousin, once removed. Charlotte told me that my descriptions of what was going on with my treatments were very educational and she enjoyed reading about them. She also mentioned how sad it was watching the video clip I attached, about the professor who was dying of pancreatic cancer but nevertheless continued to talk about the great things he had enjoyed about his life. Yes, it was sad. I think he is an exceptionally brave guy and I hope I can be like him.

And I had just sent out the last letter, with the description of “Cin Chili” sold by Cindy, the sister of our friend in Colorado, when Kathy’s sister wrote that she had just seen Cindy on the TV in Albuquerque and that she was in town at a Fiery Foods Festival. So, Carol and Frank went to the festival, got their taste buds scorched by sampling copious amounts of spicy goods and bought some Cin Chili mix and a batch of prepared Cin Chili too.

We heard from Bobbie again. Bobbie lives in El Paso and has been a friend for many years, as she was our realtor when we were in Germany and were renting out two homes in that town. Bobbie is a feisty German gal and said she was sending some of her guardian angels to be with me and turn everything around for the best. She said that the Germans were stubborn and she was sending stubbornness to me as well to give me the strength to fight on and win. There’s a lot of German blood in me too, from my mom’s side of the family. My wife has always said I was stubborn. That’s why, I guess.

We heard from Larry this weekend, but not with an e-mail. Larry has been my financial advisor for about fifteen years or so, though I probably frustrate him because I’m a lazy investor, a buy-and-hold kinda guy, despite his best attempts to get me going and moving money around as the markets change. But, omigosh, that takes so many decisions, Larry! Some folks who believe in astrology would say that’s because I’m a Libra which makes me indecisive. Whatever. Larry sent us a box of home-made chocolate chip cookies from San Antonio, cookies he and his wife Ginny made. Thanks so much, Larry. They’re almost gone already.

And of course, I’m still getting cards from Joan.

I better wrap this up and get it in the mail. So, what am I going to do for my anniversary, the one I mentioned a long time ago? Well, I’m going flying. An antique B-17 bomber is coming to town on a “heritage tour” and they offer flights for those who want to go up in it or the other plane on the tour, a B-24. I’ve been trying to get on one of these flights for years but have missed out over and over, either because I wasn’t in town when they came through Denver or Dallas/Ft. Worth or because they were booked up when I finally realized they were in town. This time I found out in time and have reservations on Friday afternoon to fly on the “Nine-0-Nine,” a restored B-17. I’m not sure if most of you, except for my friend Peter in Denver, would think this is cool, but I’m really looking forward to it.

Enough for now. I’ll be back to tell you about what we’re going to do with my low white counts and the plans for more chemotherapy when we know something.