Tuesday, September 28, 2010

Tuesday, September 28, 2010 – Day 30

You need to rebound in order to win the game. What?!? Basketball talk from the LA Phil season ticket holder, the opera buff, the museum goer? If you know me really, really well or if you’ve known me for a long, long time, you know I like basketball. You might even know that I was a statistician for the UCI men’s basketball program throughout my college years, and was head statistician my senior year. Although I ultimately kept the play-by-play, I was first trained on the rebound chart, thereby learning from the coaches the importance of getting the ball back and “controlling the boards.”

As for rebounding, I’m on it. No more headaches, diminishing muscular aches, growing stamina. I’m sleeping better, food is tasting more normal, and the steroid-induced puffiness has receded. I was happy to be back at work part-time yesterday, and I am happy my colleagues are happy to have me back. I am happy to be gaining some distance from “chemo brain” and have the energy to pick life back up from where it got left in early August – remodeling my bathroom, changing up my landscaping to be more drought-tolerant, working on the ward choir Christmas program.

As for “controlling the boards” with Waldenstrom’s, it means getting to the only clinic in the world dedicated to the research and development of WM treatments and a cure, and that is the Dana-Farber Cancer Institute with Harvard Medical School in Boston.

Right after learning of my diagnosis in August, I started receiving a feed on the most current published medical research on WM and the state of analysis on diagnosis, prognosis, and treatment options. Pre-dawn one morning in Bar Harbor while Akemi was still asleep, I sat on the floor of our hotel dressing area where I didn’t think the light would disturb her, comparing on her computer screen my bone marrow biopsy results and various blood reports with these medical journal articles, all of which were generated by Dana-Farber physician researchers. I satisfied myself that my USC Norris physician knew what she was doing for this frontline approach, but after that, I realized that all roads lead to Dana-Farber.

Also while Akemi and I were in Maine, I had my mother with my brother John’s help get a hold of my father’s medical records. My father passed away three years ago from a non-Hodgkin’s lymphoma, but my mother did not remember nor did she have any materials on hand to indicate exactly what kind of NHL he had.

In reviewing his records, it turns out that Dad also had a lymphoplasmacytic lymphoma. Dum-da-dum-dum. So in addition to inheriting the platelet bleeding disorder from him, it’s likely I’ve also inherited the genetic predisposition for a lymphoplasmacytic lymphoma. These researchers have already identified a strong familial link in WM cases and are actively soliciting cases with first-degree relative connections.

So my USC doctor and I are arranging for a consultation at Dana-Farber later this fall, with the goal of having high-level genetic analysis done. My future treatment options are highly dependent upon whatever my specific chromosomal “glitches” are.

There’s only so much of the board I can control in this game. But my rebound mindset is what the Lord told the Prophet Joseph Smith, while in the midst of deep affliction: “[A]ll these things shall give thee experience, and shall be for thy good” (Doctrine and Covenants 122:7). And so I believe that no matter what happens, these experiences are ultimately for my good. Then go out there and rebound.

1 comment:

  1. Your beautiful blog was part of a very spiritual Relief Society lesson in South Pasadena ward on Sunday. Keep sharing and uplifting us!