Wednesday, April 28, 2010

Optimism vs. Skepticism

We met my new doctor yesterday. Yes, new doctor. Dr. G. has gone east to NYC to head up the transplant program at Sloan Kettering. His departure is lightheartedly called a betrayal by the staff at MDA because Sloan and MDA are always competing for the honor of being the nation's top cancer center. Dr. G. called me in December, before we had committed to MDA to tell me of his decision and to offer alternatives. As you know, we decided to stick with MDA, first because Dr. G would still be here for my transplant and a month afterwards and second because of MDA's reputation for running such a smooth and clean operation. A reputation which has proven to be true based upon our experience. Our new Dr., Dr. Q, from India I believe, is quite warm and knowledgeable. Dr. G has also indicated he will continue consulting on my case, even though he is now in NYC.

The bone marrow results are encouraging. My doctors are very encouraged and Susan and I are a bit more skeptical. My plasma cells were at 29% just before the transplant (down from 87% post Arkansas, due to the 3 months on revlimid). The lastest bone marrow shows them at less than 5% (actually 1 %). So why aren't we jumping up and down in celebration? First, remember that debacle in Arkansas when the plasma cells went from 90% to 5% in one week; only to return to 90% the next week. Although the bone marrow biopsy is often described as one of the most definitive tests, it has its shortcomings. One of those is that myeloma is patchy. It can be concentrated in one section of the marrow, and hardly present in another. So, my view is that they hit a section that has fewer plasma cells, which is not representative of my entire bone marrow. Why do I think this? Because my IGGs haven't moved downward, and because my M protein has also not moved--it remains at 1.7. We are assured that the effects of the chemo will continue for another 30 to 60 days and that can have a positive effect in decreasing the myeloma. The doctors, (Dr. G and Dr. Q) both see the entirety of my blood work as very encouraging. When I was questioning Dr. Q, he immediately asked how my blood counts were in Arkansas, when my bone marrow results were so inconsistent. When I told him that my blood counts were in the toilet, i.e., I continually needed neupogyn, red blood transfusions, and platelets, he noted that I have not needed any of that here, (other than a couple of neupogyn shots) meaning that my marrow is working much better. Regardless, things have definitely stabilized. And they still plan to start me on a regime of revlimid and another infusion of Mike's cells, both of which will help further decrease if not eliminate the myeloma.

An insight into the road we have walked: in mid June when my counts were not recovering, I was still losing weight, I was struggling with a body rash and thrush, my IGGs were rising, and Rifkin was telling me that he could not treat me yet because my counts were too low, I told him that I thought I had really screwed up in going to Arkansas and that I had gotten myself in such a bind that I would never recover. Rather than reassure me, he only said he understood why I felt that way. He essentially acknowledged I was in trouble, and I think that is one of the reasons he ultimately referred me to MDA. In light of that history, stable disease is great and decreasing myeloma is fantastic. We'll take this.

I still wrestle with fatigue, although less so, as well as nausea and diarrhea. Of what fun! But all in all I'm doing well, or in the eyes of my MDA team, I'm doing very well. They are better judges since they see all those who have much more trouble following transplant.

Thank you again for all the support, cards, letters, emails, thoughts, prayers, etc. We continue to be extremely grateful for all the support from family and friends. We love you.


Steven L. Ritter said...

Ya.. I'm just starting down this road but my numbers can drive me crazy. I can only just slightly understand how crazy they can make you. At least Dr. G is still there for you. Trust that you are still at the top of my prayer list... However; I really would like to down grade you soon so lets get this transplant behind you and have your brother's cells start working on the myeloma, OK? Maybe you need to figure out a challenge for them? Worked last time!

Patricia Michael Melnice said...

I love you my friend and I think of you every single day.

Can't wait to have you back home so we can meditate together. Love to Susan!


Mom said...

I saw something today that I really liked. It said"You might shoot for the moon and miss but you'll be among the stars." You are a star in my mind as is Susan. Love, Mom

CancerKicker said...

I think you are dominating....but I'll let your doc be the judge of that :)

Brother Ted said...

Stability vs. Instability
I sure like the idea that you have reached some stability with this damn stuff and it was done without trying to kill you. LR seems to advocate for the Westmorland approach to the disease, "Destroy the patient to save the patient." I really like the pacification approach. I am still looking forward to the post that announces your release from "home and doctor office arrest." I must also honor those who walk this path with you. Susan, you are the greatest. Julia and Catherine, a father could not be luckier or prouder. To all of your friends, fellow myelomaites, and others who follow your blog, THANKS FOR ALL THE SUPPORT YOU SEND IN DAN'S DIRECTION!!!!!!!!!!!!! (my grand daughters tell me that lots of exclamation points really shows that you mean what you say.