I should have been dead nearly 10 months ago. Thanks to Mary Pat, our friend Kim-Anh Do, my brother Mark, my doctors and nurses at M.D. Anderson, and hundreds of cancer researchers and clinical trial volunteers, I am still alive. The problem with beating overwhelming cancer odds is you get cocky. Last night at dinner I launched into a monologue about how if only I could exercise the discipline to eat the right diet and to remain physically active, I could boost my immune system and continue to beat the odds. Mary Pat interrupted me and delivered a cold dose of reality. She reminded me that plenty of people who were younger and healthier than me have died from leukemia. She noted that the odds are still against me and that there’s not a lot I can do to change those odds . I understood that in the beginning. However, as time went by I fooled myself into believing that I could control the cancer by my actions. I think that my reaction is a common one. If you have cancer you want to believe that you have some control over the outcome and that there is something you can do to beat the odds. We all come to believe that we can fight a relapse of our disease with the right diet, exercise, vitamins, or alternative medicine. Mary Pat is right. Some things really are out of our control and we have to remind ourselves of that cold hard fact.
Yesterday was a long day for both me and Mary Pat at M.D. Anderson. First, I had 12 test tubes of blood drawn for various tests and clinical trials. That’s a record for me but my phlebotomist tells me she had to draw 22 test tubes from one of her other patients so I can’t brag. The good news is that the anti-rejection drug Tacrolimus seems to be tamping down the GvHD. My liver enzymes are dropping back down to near normal levels and my platelet count has recovered nicely.
Next on the agenda was a bone marrow aspiration and biopsy. For those of you who are morbidly curious and want to know what it’s like to have a hollow tube augered down into your hip bone while fully awake, I’ve already covered that topic elsewhere in this blog at The Human Pin Cushion. The interesting thing is that I could actually see my brother Mark’s stem cells in the bone marrow slides they prepared. If you look closely at the photos below, you can see small round dots. Those are stem cells. The preliminary test results came in late in the day and they show that there are 2% blasts in my marrow which is well-within normal limits. It will be at least a week before the molecular bone marrow test results become available. Those results will reveal whether any of the leukemia mutations have returned or whether I continue to be in complete remission. I don’t know if I can hold my breath for a full week but I’ve got no choice.
We then went to the Stem Cell Unit for a meeting with a Survivorship counselor. Our counselor has been working with stem cell transplant patients and their spouses for over 20 years. Her job was to assess how well I am doing mentally, how well we are coping with cancer as a couple, and whether we have any special needs at this stage of the battle. I learned from the counselor that “Chemo Brain” is a reality and that I need to prepare to deal with it by using electronic reminders and sticky notes from this point forward. I wish we could have stayed longer to hear more advice from her but the waiting room was full of patients waiting to meet with her and I was late for my next appointment at the CardioPulmonary lab.
Lung damage is one of the common side effects of heavy chemotherapy and GvHD. I was placed in an air-tight glass chamber where my nose was clipped shut. I was asked to blow through a computerized device for a series of tests designed to measure my lung capacity. The last test required me to inhale a large dose of carbon monoxide and to hold it for 10 seconds before blowing it out. I believe the test was designed to tell how long it took my lungs to clear the carbon monoxide. I don’t have the lab tests back yet but the technician said he was happy with the preliminary results.
Osteoporosis is another side effect of chemotherapy. I went to the Nuclear Medicine department for a bone density scan. A bone density scan uses a light dose of radiation to scan the lower back and both hip bones. The scan is designed to detect if I’ve suffered a loss of bone mass. I wonder if they were able to see the nine holes in my hip from prior bone marrow biopsies and aspirations.
This is Chemo Week for me so I’ll be going in to M.D. Anderson every day this week for two injections into my belly per day of Vidaza (azacitidine). The fun continues. As I keep telling myself, it beats the alternative.