Hello family, friends, and coworkers. I am going to use this blog as an attempt to keep everyone updated on my health status in one spot.
As of today I have officially been diagnosed with myelodysplastic syndromes (MDS, formerly known as “preleukemia”). There are a lot of different types and later on I might follow-up with more specifics. For now, the treatment is outpatient chemotherapy and getting my three brothers “typed” to see if they are candidates for stem cell transplant. The therapy is 5 days of chemo, followed by 3 weeks off chemo, over the course of several months. After that, a stem cell transplant could occur which is the ultimate cure.
How did it come to this? Well, I don’t know. You can read the description of disease and it pretty much is a random thing. But I can tell you how it was discovered…
After our last softball game on July 1, 2010, I got what I thought was a pulled muscle in my chest. After several days of not getting better, and since I also had some strange heart palpitations (which I have had in past) when I would go up several flights of stairs, I thought it best to see doctor. To his surprise, after an X-Ray he found the “pulled muscle” was really pneumonia or some pneumonia like infection (interestingly, I was not having any pneumonia symptoms). At that point he prescribed a 10 day antibiotic treatment and also took some blood tests.
The pneumonia cleared up but I was still having heart palpitations. The blood tests came back with all my blood counts low…red, white, platelets….anemia. That explained the heart palpitations as my heart was compensating for low oxygen levels in blood. I do not have any heart problems. But anemia is a symptom of something else, not a disease on its own.
More tests confirmed anemia was not diet related. Doctor then assigned me to a St Marys Hematologist, who performed a Bone Marrow Biopsy – BMB (if you look BMB on internet, the test is not nearly as bad as some sites make it out to be. It was actually painless). The result of that test was somewhat inconclusive….the sample was not the best and the numbers were borderline. Then I was sent to the “Ivory Tower” specialists as Barnes Siteman Center. Another Bone Marrow Biopsy, lots of blood draws, and the final diagnosis is what we have today.
For the most part, I am fine now. I can go out to store, drive, etc. I can’t do very strenuous things more because I can’t risk injuring myself while my blood counts are low. I could end up with uncontrolled bleeding or infections. My main problem right now is neck and back muscle stiffness, probably from being on computer too much 😉
So with that, I better stop for now. Look for more updates soon. Thanks for all the notes and emails of concern, I really appreciate it 🙂