Monday, January 28, 2008

Confounding Numbers

Sitting in the examination room on Monday. Waiting to get the velcade infusion and get out of there. No appointment with Rifkin, as I saw him last week. Expecting to get the results from the blood work that was drawn last Monday. The door opens and in walks Rifkin. "uh oh", I say, "What are you doing here?" He brushes my comment off and says its a good practice when my numbers are available for him to go over them with the patient. NOT! He rarely does that, and my blood pressure starts to creep up.

So, the Igg's have risen a bit in the last month(about 250 points) , but some of the other markers are very good. He must have said 3 times, "I'm not worried." We will stay the course on maintenance for awhile, although I was clear with him that I thought we had let the Igg's run up too high last summer before beginning treatment, as by the end of that run, I was very fatigued and my back was acting up quite a bit. He said if the Igg's continue to go up (which he isn't saying will happen in the near term), he'll probably "pulse" me with another few cycles of revlimid. As he left the room he looked me directly in the eyes and said, "you have a quality of life, Dan, and that's very important." That comment told me everything. The goals of treatment are as much directed at trying to give me the ability to have some normalcy in my life, while at the same time holding the disease at bay. Knocking me down with heavy duty chemo that might temporarily drive the numbers down wouldn't give me much quality of life. Better to play the "numbers rising, but I'm not yet worried" game and give me some good days. I can agree with that.

So, that's what living with this nastiness was like this week. Amazingly, I continue to think that perhaps someday I will go in and the numbers will all be normal. I'm reminded of a blog I wrote almost 2 years ago, on March 27, 2006, titled, "Musings of a Passenger on a Roller Coaster." Now, that was a down time. My transplant had failed and I had just been kicked out of a new clinical trial for not responding to the new drug. Rifkin wasn't sure what the next course of treatment would be or whether it would work. I had been moved to the top of the list for a second transplant with one of my brothers as the potential stem cell donor. We decided, at that time, to boost the velcade with some steroids and, miracle of miracles, it worked. We have come a long ways in 2 years, my friends! I certainly don't feel that I'm still riding the roller coaster, at least not emotionally. We've moved on to a different ride. Would it be the Tilt-a-Whirl? No. How about the Carousel? No. I'm thinking maybe the Ferris Wheel. It certainly has its ups and downs, but is a much gentler ride and you certainly get a broad perspective when you're at the top. Yeh, I'll go with that metaphor, although it's usually associated with a bit more fun than I think we're having. So, staying with that metaphor, I guess we're just swinging toward the bottom, but soon our gondola will gently rise over the carnival (I certainly like that description of our many lives!) and we will exclaim, "oh, what a great view!" Until we reach the crest, we'll keep our eyes looking upward. And the ride will continue and life will be good.

Much love to all,
dan

2 comments:

Sigun said...

Dear Dan,
We have just discovered how much easier everything on line is, including your blog, with broadband. Anyway, Sigun was so impressed b y your latest, especially your ferris wheel metaphor, that she spoke of it just before bed last night (she had just read it) and as soon as i got up this morning. i agree. there is a rhythm-of-life essence to it, as you of course know, that makes it soothing and invites contemplation. we are subject to cycles that give hope on the upswing and cleansing reality on the downturn. the cycle teaches us the necessity of balance and the wisdom of acceptance. amen.

Ingrid said...

Amen, may I just continue with Joe's final word ?
I have to admit, that my English is getting worse, not having anymore all the practice I had before.
But my interpretation of this blog Dan is, that you finally indeed found YOUR words of describing a cronical disease, and that you finally got in your head truly the idea of being affected by one of them, cutting out the fear, but accepting finally how your life will continue and go on.
That is a big step, still a sad one, but it is one that allows you to look forward and you now, I guess, can finally see the light and the end of this long tunnel. That is great. My sincere congratulations for that. Just continue this way !!!
Amen,
Ingrid