Monday, April 07, 2008


Monday morning at the clinic. No doctor, just the nurse to infuse the velcade. Numbers report from last week looks good. IGGs are steady at 1558 (last month 1660). A few of the other markers look improved so I'm happy. Other blood work, like white count, platelets, neutrophils, hematocrit, also all look good. Maintenance is doing what its supposed to--maintaining.

Had an interesting discussion with the nurse, who read the "substitute" doctor's note from last week, as Rifkin was out of town again and I was seen by another one of his partners. As with the other partner, this one was interested in knowing "the plan." I think these guys have a song stuck in their heads, the name of which is, "transplant on my mind." Boy, talk about being in mental ruts. Try expanding your thinking guys. This doc wasn't as pushy as the other one, but still, it was obvious he thought the plan should include another transplant. Maybe they think they're going to clone me into one of my brothers because I'd be getting their stem cells. The world couldn't handle it!!!! Anyway, my nurse today tells me that he wrote in the chart, "patient adamant about not having allo transplant"--that's allogenaic, meaning, from a foreign donor--a nice way to refer to my brothers. I don't remember being that adamant, but I do know given that I feel pretty good these days, I'm not really interested in planning for a transplant. I tell my nurse this, and ask her, if she had my "numbers" would she be interested in having a transplant. A clear no is the response. One hour and I'm out of there. Record time. I'm ready to have Rifkin back.

We had a very successful fund raiser for Light the Night. We raised close to $5000!!!! A good start for my plans to exceed the $25,000 we raised last year. People's generosity continues to humble me. The longer I live the more committed I find myself to helping to rid the planet of this nasty disease. With your help we'll see a cure in my lifetime!
Love to all,


Ingrid said...

Dear Dan, I think we all know by now, how precious Dr. Rifkin is for you and probably not only you.
And as I told you befor, I know HOW upsetting and depressing the point of view of other Doctors about your own disease can be.
What I learned in those past 27 years is, that you have to stick with the Doctor's opinion which you value the most, while listening also to the others. Very rare times, but still sometimes they might have one tiny little idea, that might even be a good one, about which you can think and then talk with YOUR Doctor. But most of all make sure, you always can see Rifin again and continue his cure.
And the next step is to get immune against the lack of diplomacy and elegancy those other doctors often have, sometimes even teaching them those two important behaviours in life.
Next time you see this Doctor, ask him, whether he has siblings? If yes, then ask him, how he refers to them? If now, aks him: if he had some, how he would refer to them?
Diplomacy is one of the most important behaviours you need when talking to Doctors, always, because you never know, when you might need who in case of emergency.
Try not to get hurt by those exclamations, be superior as you ARE.
You have so much healing going on inside of you, don't waste time with this kind of wounds.

And congrats for the good blood results, what more do we want?


Big Frank Dickinson said...

Congrats on the good numbers - may they hold steady.

This "foreign donor" is stateside again - does that make me a "domestic donor"? I share your reservations on any cloning - let's keep the identities separate!


shawnandjaike said...

Hello Dan,
Good to check in with you via the blog. You have probably posted it but, can you tell us how we can make a contribution to your charity that is approaching the cure for this disease?
Hope Rifkin gets back soon.