By Rich Rothman
In September 2013, I had a bone marrow transplant that doctors advised was the only potential cure for a blood cancer known as MDS (myelodysplastic syndrome). Although we lived in New York City, we chose to have the transplant done at Dana Farber because we were impressed with everything we saw and everyone we met there—especially Dr. Ted Alyea. I was released from the hospital in October, and Melissa and I settled into our life of quarantine. Almost immediately, I started to worry, and what I worried about most was what I would to do once I emerged from the bubble I was in—barred for around nine months from my office, any public place, and, with few exceptions, people.
I had lots of time on my hands. I knew I couldn’t return to my job—working 50 hour weeks as a law firm litigation partner—anytime soon. Nor could I foresee the day when I’d be in shape to play tennis or go fishing with friends. But silver linings started to appear quickly, and although it’s taken a few years, a new, bright picture has taken shape.
Perhaps the first of those silver linings was that I’ve been able to read more in the last 3 1/2 years than in my entire adult life. (I’ve written about some of my favorites on my blog. ). A second bright spot was the apartment’s piano. Several weeks after being discharged, I was lucky to find Rebecca, a terrific jazz pianist who came to the apartment wearing a mask and gloves to teach me. The lessons were great until she got sick and my doctor wouldn’t let her near me. So we continued them by Skype. The lessons –and my very slow progress— continue to this day. I have time to practice daily—an impossibility in my old life.
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Despite the books and piano, I spent a lot of time worrying, obsessing, about what I would do professionally once I could work at least part time. Although I’d enjoyed my career as a corporate litigator, it wasn’t the career I’d anticipated when I went to law school 40 years ago to be a public interest lawyer. Cancer forced me to think hard about what I wanted to accomplish — and what I wanted to experience and enjoy — during my lifetime, which now had a much shorter horizon. I began to focus on how I could reshape my career once I could get back to working.
There have been bumps and detours along the way. But after a few years of internal turmoil, burdening Melissa with my consternation, and chasing dead ends, things seem to have fallen into place. I’ve decided to devote my professional time to public service work helping people in need: disadvantaged children, victims of domestic violence and human trafficking, and prisoners who should no longer be incarcerated and those attempting to make a fresh start after release. I’m also spending time on things I rarely had time for in my pre-cancer life—fly fishing (not catching), traveling, taking courses, seeing plays with Melissa, continuing my slow progress on the piano, and now writing. While I certainly wouldn’t have wished for cancer, I’m happy with my “new life,” and don’t pine for the old one.
My other source of worry was the sorry state of my body. Although I’d been active before I became ill, every ounce of strength seemed to have been sapped by the pre-transplant intensive chemo I’d undergone. Later, the prednisone steroid I took, while life-saving, severely weakened my muscles. I struggled to walk up stairs, and even after I could return to the tennis court I had no strength to run for balls, no stamina. I felt like a decrepit old man.
In the face of these frustrations, I just tried to keep moving ahead to regain strength—even when the most I could do was very little and progress was elusive. There were months when exercising served only to remind me of my feebleness. And there were times when I pushed myself too far and suffered the consequences. But that was just a part of the back-and-forth process for me. It’s only been in the past several months that I’ve felt strength returning. I can exercise more frequently and I’ve made some (albeit unimpressive) progress on the tennis court. But even now, my strength still seems to come and go, and I know there will continue to be ups and downs—physically and emotionally.
The three overarching lessons I’ve learned from this experience are:
- Try not to waste a lot of time bemoaning what you can no longer do. Focus instead on what you can do
- Take advantage of the silver linings. Find and enjoy the good things you couldn’t or didn’t do before. Seize the opportunity to “redesign” and make the most of your life.
- Stay in the game physically. Do as much as you can, even if that’s not much and you feel like you’re not making progress. It will come.
For more from Rich, visit his blog at Reflections Across The Spectrum.
Thx, Rich, for your thoughtful post. I could certainly relate to it having my stem-cell transplant Dec, 2014 at Dana, due to MDS/AML, having been extremely active career wise and physically and now having to reinvent myself without my Superhero spouse who died suddenly one year post my transplant. The weakness was most apparent that first year out, then the grieving process took up much of that 2nd year with trips back to Dana for GVHD of lungs, skin and eyes. This year I am focusing on ME; attending GVHD symposiums to try and get the latest info and improve my health as much as possible. Confidence is a big issue for me. Solving issues without my Superhero, although very sad, has been impowering. Surrounding myself with positive, thoughtful, caring friends who don’t feel sorry for me but inspire me has been most helpful. I jumped a major hurdle in going to the Swiss and Italian Alps last month with my skiing
family. No, my skiing days are over but the thrill of watching family members jump into snow shoulder height with the ease and confidence of their US ski team days was just wonderful even with my lungs at 12,000′. I did it and maybe those are the 3 words I try to grab hold of everyday. Do something, anything, that can bring out those 3 words at the end of a day. That has really helped me. Wishing many more days with joy and peace to all the stem-cell transplants out there. Be Well, Anne Lemke
Very thoughtful post. So proud to see a cancer survivor having fun.