Dave’s Great Adventure
Book Three, PS3
February 12, 2010
Recently my mother received a very late Christmas card and letter from some elderly friends of many years ago. The letter started out, “I better get a letter out to my friends or else everyone will think we’re dead.”
That’s rather where I am right now. I have planned an update, have started composing an update in my head, and have promised many friends that an update was coming…for many months now. As I’ve said in other delayed reports in the past, when I am silent for too long, some folks have to fear for what is going on, and so I have received a few tentative “How are you doing?” type messages, to which I have apologized for being so tardy and promised to get a message out. I have been busy, but not so busy that I couldn’t have gotten at least a short message out if I had just sat down and done it.
Anyway, the short answer to the question about how I’m doing since I completed my last round of chemotherapy is, “Just fine!” I have been in complete remission now for almost 19 months. That’s significant, as I’ve now been in remission for a longer period of time than ever before, my previous long remission having been 18 months after my course of intense therapy in March 2004. And although I have had a return of some of the “chemo brain” effects, with problems remembering things and in trying to multitask, my strength is as good as it’s been in many years, as I’ll tell you in some following paragraphs.
And the remission is even better than “just” an eighteen month remission! I had a bone marrow biopsy last August 2009 and at that time my docs at M. D. Anderson couldn’t find leukemia in my blood, or in my bone marrow, and couldn’t even find any evidence of disease at the MOLECULAR level with a test called a PCR probe (polymerase chain reaction)! I know of another CLL patient, a journalist who also sees Dr. Keating (my doc at M. D. Anderson), who achieved PCR negativity ten years ago and still is in remission. That’s not to say he’s cured, but that’s an amazing stretch of remission. In fact, he says in his writing that he is, for all intents and purposes, cured. But, I imagine that he still gets tested periodically. Maybe I’ll ask Dr. Keating about him the next time I see him and see if our doc thinks he’s cured.
Now, I’m very, very happy to be PCR negative, but I still have to go back and be tested periodically. In fact, I have to go back to Houston next week for yet another bone marrow biopsy, to see if there’s any evidence that the disease has returned. Wish me luck!
Several things have happened over the past year since I last sent out an update, things that many of you may find of interest. The first concerns my wife Kathy, whom many of you know. Now, Kathy has cared for me through every day of every course of the therapy I’ve had since I got sick back in 2002. Well, it has been my turn to care for her recently. Kathy has an inherited trait for degenerative arthritis and has had increasing pain in her knees in recent years, just as her mother and sisters have had. One sister and her mother ended up with joint replacements and so, in the last few months, Kathy has had both knees replaced, one in September and the second one last month. She is recovering very well and things are on track for a complete recovery soon, but her surgeries have given me the opportunity to care for her as she has done for me for so long. She’s currently going to outpatient physical therapy and is doing just great, less than four weeks after her second surgery. She rarely even uses a cane anymore. I’m not much of a househusband but I’ve been able to be trained to do laundry, clean up the kitchen and warm up some food while Kathy’s been laid up.
Back to my chemotherapy; I did very well during the time I was getting the drugs and in the months thereafter, except for a bad bronchitis/pneumonia I had about a year ago, but my immune system has taken quite a hit. One of the drugs I took, called Fludara, specifically targets white cells, which of course are the cells which help protect me from infections. Well…. Last year Kathy and I went to Antarctica on an “expedition,” which was just wonderful. I recommend such an adventure to all of you. But, during the course of our trip, we were in daily contact with penguins and their, uh… guano… or excrement. The shores around their colonies were often coated in the stuff. Now, we had rubber boots and were protected from the stuff (unless we slipped and fell in it, as some folks did) but at the end of each trip to the shore, we had to take our boots off. And even after the boots had been cleaned upon our return to our ship, they had some remaining “stuff” on them. We inevitably must have gotten some on our hands as we removed our boots, at least on a microscopic level. Anyway, Kathy probably got some penguin poop on her hands, and then into her eyes, because she developed a bad eye infection. The ship’s doc had some simple antibiotic eye drops which slowly seemed to take care of the problem, until we got home, when it seemed to recur. So we went to a doc here in town to have her re-evaluated and get some different antibiotics, which worked quite well.
So, just as she was getting over her infection, I got it. I treated myself with the same stuff that had worked so well on her, and it did work well. But now, it recurred in Kathy. And then when I finished my antibiotics, I got it again, too! We ping-ponged the infection back and forth for about ten weeks, despite cleaning the whole house, washing all the bed linens, washing down sinks, light switches, counter tops, etc. Then, during the time all that was happening, my ophthalmologist took a look inside my eyes and discovered that I also have a fungal infection called histoplasmosis in/on my retinas! Now, there is no good treatment for this. If it starts to spread, as it can, they can use lasers on the spots (destroying the retina with the infection) or inject the spots of histoplasmosis with drugs, like the Avastin I was getting during my most recent chemotherapy. So far, in the months since this new infection has been discovered, it has not seemed to spread at all.
And, during this time, I started having clusters of growths on my hands and right forearm. That was curious, so I went to a dermatologist to have a biopsy done, which showed that I was developing warts on my hands and arm. I’ve had some problems with warts on my hands since I first found I had leukemia, and getting warts is not uncommon for chemotherapy patients since our immunity is compromised, but I was getting them in places I’d never had them before. So, I’ve been going to my dermatologist for months now and have had probably a dozen treatments to destroy over 20 warts, and we still have a few persistent ones to deal with.
And then, as if the eye problems and the warts weren’t enough, the irregular heart beat I’ve had for years got much worse about this time. I was having irregular beats throughout the day, predominantly a rhythm called “bigeminy,” where you repetitively have a normal heartbeat immediately followed by an abnormal heartbeat. This led to several consultations, prolonged heart monitoring and eventually starting more medications, along with talk of possibly going into my heart to “ablate” the abnormal part of my heart that is causing the problem. I’m doing much better now, and my heart rhythm is more normal than when this problem first developed, but I still have frequent problems with the bigeminy. I’ll be seeing my “arrhythmologist” again in a couple of weeks to see what our next step is.
Last year, just before I stopped writing, I had mentioned that I was doing more and more with the kind folks from the Leukemia and Lymphoma Society’s Team in Training. I had started doing some of their events and had even signed up for a half marathon. I’m extremely pleased to tell you that I was strong enough to be able to complete that half marathon last May, and then in a fit of irrational exuberance, I went and signed up for half marathons in Denver in October and again in Dallas in December. I’ve been raising funds when doing these events and have been pleased to have completed both the half marathon walks without great difficulty, but also have been able to raise more money for the society. And, I’ve been doing something even tougher (for me)…I’ve been doing a bit of public speaking at some LLS events, at recruiting meetings and at pre-marathon dinners. It’s tougher for me, probably, because I’m prone to terrible stage fright when in front of crowds, but I’m happy to say that I’ve done reasonably well in my attempts at public speaking.
And, I’ve gotten so “into” these events that I’ve signed up for yet another half marathon for later this year. In June I plan to do the San Diego Rock and Roll Half Marathon as yet another fund raiser for the LLS. I think that I’ll take Kathy out there and I’ll do the event and then we’ll have a little vacation out there as well.
And one last thing; my mom, whom many of you know, just celebrated her 90th birthday last week. Happy birthday, Mom!
And I think that’s enough of an update for now. I’ll be back when I have more news. In fact, I may be back rather soon to report on the results of my upcoming bone marrow biopsy.