Monday, February 25, 2008

Some Days Are Like That

Started chemo cycle No. 3 today. Numbers will come in next Monday. Couldn't be examined by Rifkin as he had hospital rounds, so I'm scheduled to be seen by one of his partners. The one doc I don't like walks into the examining room. My last experience with him was just prior to my transplant and, without repeating the details of the encounter, I had a deep dislike for him. So I think, make it short and sweet and get out of here. First he tells me my white count is too low and he's not going to authorize my chemo. I object and tell him my white count has run low through much of my treatment. Finally he agrees to call Rifkin and, not to my surprise, Rifkin tells him to authorize the chemo.

Then he starts questioning me about "what's the long term plan here?" Although he won't be the one to recommend my course of treatment, I'm always interested in getting another viewpoint. Well, I certainly got that in response to my comment, "well, what do you think should be the approach?" He is a fervent believer in another transplant, as soon as my IGGs are in the low range, especially because I am doing so well---better able to withstand the assault of the high dose chemo and/or donor transplant from one of my brothers. His view of the chemo approach is that it is prepartory for transplant, not a long term treatment modality. Not a pleasant conversation as I am not interested in the transplant option except as a last resort. And I think the landscape is changing with these new drugs and they may become a long term treatment alternative. I listen and don't argue with him. He leaves and my nurse walks in. She had been in and out of the room and had heard much of the conversation. "what was that about?" she asks. After I tell her, she leans forward and says in a whisper, even though the door is closed, "I wouldn't take the risk of another transplant unless I had no other choice. People often get quite sick after sibling donor transplants. Quality of like is important." I agree and am aware that this is the second time in a month I've heard this "quality of life" comment. It makes me uncomfortable. She then tells me I'm lucky to have Rifkin as he is more informed on the advances in chemo drugs and is not as fond of transplants as some of his partners. If I didn't know it already I know it now: sometimes your health care is wholly dependent upon the luck of who you get as your doctor. Of course, when I was referred to Rifkin I had no idea what his philosophy was compared to his partners.

I think we'll ride this velcade/dexamethasone/and revlimid if necessary, until something else comes along or it isn't working anymore. Tough to get my head out of the negativity of this doctor's visit. Some days are like that. Tomorrow's a new day.

Tuesday, February 19, 2008

Finally----A Posting

After receiving a raft of good natured jabs for not keeping my blog up to date, here is the latest, although it isn't much.

I'm still on maintenance--velcade and steroids once a week. I won't get any reports on my blood until March 3rd (after the blood draw next Monday, Feb. 25th). I have this week off and am enjoying it immensely. The chemo regime this fall--velcade, revlimid and steroids, was so rough that velcade once a week feels like no chemo at all, to me. Until the fourth week of the cycle when I get off all drugs, and then I realize how my reality has changed. Anyway, I'm doing OK, because I am so fortunate to be able to handle these drugs without a whole lot of debilitating side effects.

I'm continuing to enjoy life, choosing to do those things that give me joy, and spending time with many friends. Can't complain about anything.

This year is leap year. I'm sure that has some significance in some calendar or astrological chart, but I have no idea what it means. Maybe one of you will enlighten me.

I'll have more to report in early March. Until then, enjoy your life.
Love,
dan