November 30 2011

Man I hate needles, partly from being a pin cushion during the past three years living with AML. Some vampires were much worse than others. I think I have developed a Pavlov reaction to getting stuck that sometimes. I am now a needle wimp without some serious pre-medication action. But in weighing it all out, I wouldn't let that stop me from going back into the James Cancer Hospital and getting these Bone Marrow Biopsy’s and Bone Marrow Aspirations every quarter. Hopefully we can get to an annual schedule soon.

So what’s the dealio, how am I doing? Well as you can see in the video I am still alive and kicking, just waiting on the results. I am anticipating everything is still good. My doc still will not change my prognosis. Rats, I hate hearing that I only have a 60% chance of 5 year survivability even now. Its frustrating. I am am just as busy if not more so than I was prior to being diagnosed. I have put on a few pounds… well, maybe more than a few pounds, I am still having some respiratory issues that are hindering my physical capabilities. I am also still struggling with cognitive disconnects or chemo brain type episodes, ocular headaches and the daily does of bone and joint pain but considering it all I really can’t complain. I am luck to be alive.

So hopefully I can maintain remission and prove my doc wrong. However, if she is right it will not be a pretty road. My sister was tested to see if she is a bone marrow match and unfortunately, no match. It is very personal decision to be tested and placed in the national registry. After you watch people that are close to you die, some very quickly, others have suffered immensely, and as you watch them die you wish that there is something ... anything ... that could be done to help relieve their pain. In my case there wasn't a thing I could do, I am in the same boat. It is a very helpless, empty feeling.

There are many people in a position to make a difference for someone in a similar situation. Without a bone marrow transplant (BMT), this form of leukemia, called AML, could claim it's victim in about 3 - 5 years, possibly sooner. With life giving marrow this person's chances of a full remission (recovery -- free of cancer) can be as high as 80 - 85 percent!

I signed the back of my drivers license to be an organ donor like many others, but I'd probably have to be dead to do most of that donating. With bone marrow donation, you would replenish your marrow in about 3 weeks (and remain alive too).
Matching is much like hitting the lottery numbers. To date, of the over 2,000,000 people typed by the National Marrow Donor Program (NMDP), only around 4,300 unrelated been fortunate enough to be selected to donate. Currently only 65 percent of all people requiring bone marrow transplants can find a suitable donor. Thirty-five percent are not so lucky. The key to unlock their disease is in the bones of someone still untested. I’m just saying…

So that’s it for now, I know these posts are few & far between but facebook me, it is updated much more frequently.