I was excited when I got the news that fellow patient, Ed Wolfman, had decided to share the story of his multiple myeloma journey with us. And after only two installments, I soon learned that Ed had some fans!
Unlike me, most other people have lives! So when Ed got busy and wasn’t able to get me the third part of his saga right away, I started receiving emails asking how he was doing and why I hadn’t run more.
Since it has been several weeks since I started Ed’s story, here is what I originally wrote when I introduced the series:
I have met so many incredible people since my multiple myeloma diagnosis.
The common bond we share makes small talk unnecessary. And it instantly breaks-down the superficial walls that we all use when we deal with others.
Add-in a few other commonalities, and PRESTO! Friends for life!
I have never met Ed Wolfman. He lives in California and I live in Florida. But multiple myeloma brought us together. I can’t even remember how we first met online. He must have emailed me about a post I wrote. Or maybe I commented on his patient blog.
I do know that we both attended the University of Wisconsin. And like me, he is a big Badger sports fan.
Ed is a few years older than I am, but we were both in our early 50′s when we learned the hard way about multiple myeloma. And we both chose to wait to transplant until after our first relapse.
Hopefully we will meet someday. At a UW football game perhaps?
In the meantime, Ed has kindly agreed to share the details of his myeloma story with us now…
All caught-up? GREAT!
So by request, here is installment three of Ed’s myeloma journey: Relapse
Things were rather uneventful from late 2006 to late 2010. Semiannual bone marrow biopsies, while inconvenient but altogether necessary to track the condition of a non-secreter, continued to show no trace of active disease. I was on a maintenance program of 40 mg of dex, once per week. I found that over time, the dex became more and more problematic. I was cranky. I developed urinary problems, my blood sugar would spike on dex days to diabetic levels, and endured the familiar wired to tired cycle that experienced dex users are so familiar with. But all in all, it was a small price to pay. I had no bone pain. I was able to work, play, sleep, eat and live quite normally.
When I met with my doctor to review the results of my year-end biopsy in 2010, I could tell something was not right. She reported that the myeloma had returned–that 15% of my bone marrow cells were diseased and that treatment would need to be resumed. (Being an oncologist must take a special dose of fortitude. I would suppose that you just can’t get too emotionally involved in your patient’s survival, as many just don’t make it. Nevertheless, doctors are humans and in this case, my doctor admitted that she had to take about 10 minutes before seeing me to steel herself before delivering the bad news. She’s a gem!) She recommended that I schedule-up with Dr. Vescio ASAP to discuss options and strongly suggested that the transplant option should be seriously considered.
I met with Dr. Vescio shortly thereafter and he strongly advocated the transplant. In my case–as I approach 60–he felt it would be important to perform the transplant before I get too old to handle such an intense procedure. He told me that I was approaching the informal age cutoff for doing transplants, but also said that the decision was becoming less age related than health related. Nevertheless, he advised that I should take advantage of it before any other health issues had a chance to crop-up.
It was a pretty straightforward decision. I was on the transplant road.
The process began with a resumption of Velcade plus dex, this time supplemented with Cytoxan, a new chemotherapy agent to me. The objective was to tamp down the myeloma cells as much as possible in order to transplant a clean cell population. I started this regimen in February with the expectation that my transplant would be scheduled for in the June/July timeframe. I tolerated the VCD regimen well and had no unexpected side effects beyond the usual dex related malaise.
On April 1, I woke up with severe abdominal pain. I went to the ER and was quickly diagnosed with acute diverticulitis–a disease of the colon. The attending doctor wanted to do immediate surgery, but was willing to try administering antibiotics to bring down the infection. The antibiotics worked well, but it was still felt that I would need to have surgery to cut out the diseased portion of my colon. While this episode was not directly related to myeloma, it was entirely possible that the large doses of dex may have been responsible for bringing this about. Nevertheless, my induction therapy needed to be stopped in preparation for the surgery. I had the surgery and took a few weeks to recover, then resumed the VCD regimen. I had my last infusion on the last day of 2011. A subsequent biopsy showed that the VCD had reduced my disease to negligible levels. Now it was time to prepare for the transplant.
One thing that I have always noticed about Ed is the almost matter-of-fact way he seems to deal with his cancer. Continuing to live as near normal a life as possible has always been a top priority for Ed.
But what we want–and what we ultimately get–are often two different things, right? Most of us have had medically significant episodes related to our myeloma and/or myeloma therapy. Ed’s bout with diverticulitis illustrates this point.
I’m anxious to read highlights from Ed’s transplant experience. Thanks again for sharing, good friend!
Feel good and keep smiling! Pat