Two years ago today I checked into the hospital with an abnormally low platelet count. Little did I know that my life would never be the same.
At midnight on January 1st, 2008 I took a sip of Champagne and started to feel a scratch in the back of my throat. Diagnosed with strep throat, I recovered in a few weeks only to catch flu a week later. I finally recovered from the flu but started noticing bruises popping up where they shouldn't. Additionally, tiny little red spots called petechia started forming on my legs.
Believe it or not, my wife had to talk me into going to the doctor. Except for low energy, I felt fine, and if I feel fine I must not be sick, right? Anyway, after a few days of resistence, she finally talked me into a visit to the doctor, and on Sunday the 24th I went to the clinic. The doctor ordered a blood test and said that she would call me with the results. Two hours later she called and told me I had a low platelet count and to check in to the hospital.
Ten minutes later I checked in to Seton Medical Center and was sent to the seventh floor. My wife and I got off the elevator,one arrow pointed to maternity and the other pointed to oncology. I remember saying to my wife: "Oncology, that's cancer isn't it?" That is the moment that I lost my swagger, the moment when I went from perplexed to downright terrified. That night we watched the Swell Season perform at the Oscars and, at 42, I spent my first night in the hospital ever.
Over the next year I would spend more than a hundred nights in a hospital room. After a bevy of tests I was diagnosed with acute lymphoblastic leukemia(ALL) To quote the Wikipedia entry on the disease:
Malignant, immature white blood cells continuously multiply and are overproduced in the bone marrow. ALL causes damage and death by crowding out normal cells in the bone marrow, and by spreading (metastasizing) to other organs.
Additionally I have the Philadelphia chromosome, where parts of two of my chromosomes switch places. Freaky, huh? (well, it freaked me out)
The next year was, in a word, hellish. I got chemotherapy in my hometown and then, after the Philadelphia chromosome was discovered, received eight more intensive chemo treatments at MD Anderson Cancer Center in Houston. Fifteen years ago my particular strain of the disease would require a bone marrow transplant but in the late 90's protein kinase inhibitors were developed by Novartis, new drugs are doing wonders for leukemia patients. I take a drug called Dasatinib, which, so far, has kept the transplant doctors at bay.
But back to my year in Hell. Chemotherapy is very hard on the body, It destoys your appetite, causes fever and chills, saps your energy, and creats side effects that should not be discussed in polite company. Plus the goal of my particular treatment was to destroy all of my white blood cells, which makes me succeptable to all sorts of ailments. For two weeks after treatment I had to wear a mask in public and take a medicine chest full of anti-biotics, anti-fungals, anti-nausea, anti.... well anti any thing you can think of! If i ran a temperature of 101, it was off to the emergency room and another week or so in the hospital. One time I got sick from fumes caused by bird poop that was baking in the summer heat. I came home from Houston one night and fainted in the bathroom, pulling down a porcelan towell rack. One complication (which will go unnamed, again, because of polite company) required three surgeries. I have to take steroids with chemotherapy, which makes me irritable and hungry, so hungry. I've gained forty pounds over the last year.
My poor wife has had to suffer through the whole thing with me while working full time and haggling with insurance companies, hospitals and doctors. In many ways caregivers suffer as much as the patient, because they often feel helpless as they watch their loved ones deteriorate.
But the good news for my wife, and me, is that I have stopped deteriorating, and have, hopefully, turned the corner. I am in remission and the major chemo treatments have ended. I still have a long way to go, but I have avoided the problematic bone marrow transplant and my doctors are optimistic about my chances of survival. I'm starting to feel like a real human, and am ready to enter the world again. One important question remains, will my hair come back its original red, or will it be blond or have I turned completely grey in the last two years?
We need health care reform....now. We need the public option and we need Government to intervene in the market to bring costs down. It has to happen. If Democrats are gong down in the fall, at least go down fighting for what's important. Use this majority to enact lasting change.
And by the way, Democrats need to stop taking progressives for granted. They seem to think that we will vote for them no matter what. Although that may be true, it is our activism that they need the most, and if we stay home until election day, Democrats have gained nothing by tacking to the right. Speaking of progressive activism, please read nyceve's recommended diary and make some phone calls.
Another thing I'll ask you to do is consider registering as a bone marrow donor. Here is a link to the national bone marrow registry: http://www.marrow.org/...
Thanks for indulging me.