March 5, 2009 11:55 PM 84 days to go

We are now in what I'll call potato mode. Since I only go to the clinic on Wednesdays, that day obviously generates the most noteworthy medical updates and really is the meat of what I have to say to you. So it kind of "boils down" to 1 day of meat and 6 days of potato(e)s (where's Dan Quayle when you need him?).

But I can still report on other "major" events that do occur...

For example, today, I had my wife buzz cut my hair as it was growing at all different rates and she was saying that I looked like a puff ball and a Chia pet. This is the first time that my hair has been trimmed since November 3rd but I would not recommend chemotherapy as a way to avoid having to get your hair cut.

Also, now that my counts are coming back, I can actually brush my teeth again. So, today, was the first day that I have done that since February 10th and it does feel good to have your teeth nice and smooth again. Now don't get the idea that my mouth must be some kind of skeevy mess at this point - other oral healthcare products have kept my mouth in excellent shape. In fact, they are surprised at Dana-Farber that I have never had mouth sores as they are one of the most common side effects of chemotherapy even if you do the prescribed oral regimen. From what I understand, that is not a very pleasant thing to contract as it affects your appetite and tends to greatly limit what you can and want to eat.

I am going to greatly change the subject here because I have always shared what's going through my mind and there is something that has always been going through my mind from the day that I was informed of my illness. I am prompted to do this because I just emailed a friend and I shared this with her. And to be honest with you, I have gotten so wrapped up in the other things that I have written that I have been negligent to mention this.

You all obviously know that I have always been very upbeat about what is going on and with my own prognosis as to attaining a full recovery. Rest assured, those have been and still are my exact feelings. As a man of faith, I have felt the touch of God's healing hand so many times during this experience that, in my mind, there can be no other outcome for me.

But, you all have to realize that AML M5 is one of the worst types of leukemia to have. Depending upon what you may read and from what my doctor said, in simple terms, the prospects of surviving the first year are about 50-50 and only 25% after year 2. This is not an attempt to evoke anyone's sympathy, it is just a fact. From my standpoint, those are only numbers,however, and we are all individuals. So the numbers mean little to me - especially so since I have continually defied the odds up to this point.

So what has been on my mind?

Last year a fellow parishioner in my church died from leukemia. As I understand it, he had a different form of leukemia than I and it was, for whatever reason, difficult to find a donor for him requiring that they constantly try to keep him in remission via chemotherapy. Ultimately, it was not possible to do so and the disease overtook his body before the bone marrow transplant could be done - even though they finally located a donor for him. He was someone that I had the opportunity to work with at the church and it was especially hard to see him pass on - even moreso as he was a younger man than I. Obviously, I had no idea that only a few months later that I would be placed in his position. So every time I sit down here to write, I can always see his face and I always wonder why I am doing so well and he had the misfortune to not make it through.

So, maybe, just maybe, I am writing this blog for the two of us...

Bob