Monday, December 16, 2019

Article on me in the July Wisconsin Jewish Chronicle

I didn't realize they published this until today.....

Racine native receives bone marrow donation

Edward Wolfman spent a year on the search for the ultimate mensch — a bone marrow donor who could cure his leukemia and save his life. In the spring of 2019, Wolfman finally got the call; a match had appeared on the bone marrow registry.
Wolfman had reached out to the Chronicle during his search for a match, but before it could be reported, he found a donor from across the Atlantic. On May 16, Wolfman received his life-saving transfusion and is now on the road to recovery.
Wolfman, a Racine native, had his bar mitzvah at Beth Israel Sinai Congregation of Racine and is a graduate of the University of Wisconsin – Madison. Wolfman has lived in Los Angeles for more than 40 years, now with his wife and two adult children, both adopted. 
The donor is a man from England. Once the match was made, the donor went through a physical examination and had a procedure done to extract the marrow. A courier then took the marrow from England to Los Angeles. 

Interested in registering as a potential donor? More questions? Contact the Icla da Silva Foundation, Inc at 217-840-8302. Or visit: Join.BeTheMatch.org.
“It’s kind of weird that there’s someone walking around in England who went to a lot of trouble to save my life for no reward other than the reward of saving my life … when you define mitzvah, that’s it,” Wolfman said in an interview.
Searching for a match
Before receiving the donor marrow, Wolfman spent almost a year undergoing intensive chemotherapy, which doctors hoped would eradicate the disease. However, the treatments were unsuccessful, necessitating a bone marrow transplant for Wolfman’s survival.
Wolfman first turned to the bone marrow registry a year ago, but his initial search for a match was unsuccessful. As Wolfman waited for a match, he remained hopeful, and had “a sense that it will all work out,” he said in an interview before finding a donor.
His hopefulness led him to begin a campaign to find donors, and he turned to Jewish communities for help. Bone marrow donors must share a similar ethnic background with the recipient, and Wolfman needed a donor of Ashkenazi Jewish or Eastern European descent. He told his story to Jewish publications around the country and urged people to join the bone marrow registry. 
“They feel good for life. Someone out there is living because of their efforts,” he said of donors.
Wolfman’s connection with the Jewish community in Los Angeles became stronger throughout his struggle with the disease, he said. His rabbi mentioned him at every service and encouraged congregants to register on the donor list. Congregants drove him to the hospital at times when he was unable to drive, he said.
Now, a few weeks after the transplant, he remains in a weakened state.
“I really just want to get my life back… it’s like I’m a shell of myself,” Wolfman said.
Yet his struggles have reminded him that he is recovering, and he is grateful that he is going through this process. Throughout the ordeal, Wolfman has remained hopeful, from praying for a match to working towards becoming his old self after cancer. 
The rules of bone marrow donation stipulate that the donor and recipient must remain anonymous for at least two years. If Wolfman could meet his donor, he would tell him, “You saved my life, and I owe you a lifetime of gratitude,” he said.

Thursday, December 12, 2019

Pushing Hard!



I’ve started working out in the gym in an attempt to bulk up my skinny body without getting back the fat I lost during this process (My cruising weight prior to all of this was around 175, it’s now 160..which is much healthier.)  I started out with very very light weights.  However, I’ve had to suspend my workouts since I’ve developed some shoulder stiffness.  My oncologist assures me it’s not due to any treatment, so I’m going to see an orthopedist and I’ve been getting some acupuncture.

Got my first post chemo haircut yesterday! That’s pretty significant.  It’s super wavy right now.  Pre-chemo, I had some flecks of grey.  Interestingly, there is no grey in the new crop of hair.  I suspect that will change. 

Received a significant update on my biopsy yesterday.  As I mentioned last time, my doctor sent my results to ClonoSeq, a new analytical tool that can determine whether or not my two cancers came from the same stem.  And it also is much more sensitive than standard tests to determine if I have any active cells.  The results are:
 1) the multiple myeloma and leukemia are not from the same stem.  One did not cause the other.  It is mostly just bad luck that I contracted a second cancer, although it is still possible that the myeloma treatment created an environment conducive to the growth of the leukemia.  But from an ongoing treatment standpoint, each needs to be addressed separately.
 
2) to a measure of 1 in 1,000,000 cells, no active cancer cells were detected.  Specifically, the report says: “Test findings are consistent with a lack of detection of either original clonal population.”  Initially, that caused my doctor to suggest I was cured.  But when I asked him if I could say that here in my blog, he suggested:  ”You can say – I am in the most stringent CR (complete remission) possible, no disease is detectable by the most sensitive tests (MRD-flow and NGS for V(D)J) are both negative).  Cure = 10 years disease-free!  Having said that, depth of remission is related to duration of remission.  If you have negative ClonoSeq at one and 2 years you are probably going to stay in remission a long time or forever.  I’m suspecting that his not using the adjective “cured” maybe following the Jewish custom of not giving a “kinehora” (tempting fate).  But all in all, this is fantastic news.

The ongoing plan for now is to have biopsies every 6 months.  Blood tests and doctor visits monthly for the next six months.  I’m not on any chemotherapy or steroids.  Just some anti-viral and anti-fungal meds and some mineral supplements (magnesium and potassium).  I’m also on meds to treat the steroidal diabetes that was caused taking steroids for several years. And that is working quite well.  My glucose is normal. 

In unrelated news, we’ve been enjoying spending time with our 2-year old granddaughter Madison.  We have a weekly pajama party with her on Tuesday nights.  Lately, she’s been having trouble settling down to sleep.  So, I’ve gotten into letting her fall asleep in our family room while we watch Rachel Maddow. That usually puts her out in about 20 minutes.  Plus, she now knows what “quid pro quo” means!