Well today I tried to play golf for the first time since the diagnosis. My back pain has been present but manageable so I popped a vicodin and went to play. I felt pain on about 80% of the swings, sometimes just a twinge, sometimes enough to make me drop to the ground after a swing. But I was managing. I made it through the first nine holes and thought I would continue. I wasn't scoring very well because it was impossible to swing through the ball -- I couldn't rotate around my spine as I'm supposed to. But I thought just to be able to finish the round was a good goal.
I drove on 10 and the ball was a little low but had a decent draw to it and wound up in the center of the fairway about 170 yards from the pin. I took out my club and swung and I felt like somebody had stabbed me in the back with an inch-thick steel rod. I heard a crack (like a knuckle cracking) and I fell to the ground in pain. I was really scared...I thought for a moment that I'd literally broken my back or at a minimum shattered a vertebrae there. It felt very warm at the location where it was tweaked. The pain was very intense for about five seconds and I thought for sure I was going to have to go to the hospital.
It subsided just enough for me to get to my feet, so I knew my back wasn't broken, but golf was out of the question. I moved slowly back to the cart and called Jill to let her know what had happened. My back is tender now but doesn't hurt. Nonetheless, no more golf until I'm better.
I'm going to see Forman tomorrow morning and will ask him about getting on biophosphonates for the back. They have some side effects but I have to arrest the damage being done.
Separately, I received an email from a a very nice woman named Lois who is 56 and who recently completed Dr. BB's therapy. She is in complete remission and feels very good about the protocol and wonders why anybody in my situation would think twice about it. I will be corresponding with her and another couple of people that have gone through it in an effort to educate myself.
One thing that is becoming a bigger concern to me is the lack of long-term disability insurance. I must find a way to get it as I'm going to be out of the office for more than six months -- probably as long as a year.
Anyhow, that's all the news for today. More to post tomorrow after I see Dr. SF, where my topics of questions will include (a) biophosphonates, (b) how he feels about Dr.BB's protocol, (c) whether he could give me any of the maintenance therapy even if he doesn't want to do the tandem transplants, etc. (d) whether any of the information presented at the recent hematology conference changed his perspective on treatment, (e) what the current state of my disease is given the blood work that we did there a month ago -- and they will do more tomorrow, (f) what kind of HLA typing my brothers and I need to do, and (g) what his colleagues said when he had them review my case.
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