This post originally appeared in Cure on August 16, 2017.
I’ve spent four years on a journey that has included a bone marrow transplant and open-heart surgery among other episodes. Thanks to my extraordinary wife, we’ve been able to find silver linings and enjoy life as we’ve run this gauntlet.
In 2013, shortly after turning 61, I was diagnosed with MDS — a blood cancer for which, in my case, the only potential cure was a bone marrow transplant. I had no apparent symptoms at the time and was working 50-hour a week as a law firm partner, playing tennis and working out regularly.
Hematologists advised that the MDS could likely kill me in as little as three years, so we decided to go ahead with the transplant at the Dana-Farber Cancer Center in Boston. I was admitted to the hospital in September after returning from a “last hurrah” fishing trip with friends. Before the transplant, I had intensive chemotherapy intended to destroy my immune system so my body wouldn’t reject the unrelated donor’s bone marrow. Following the transplant, I remained in the hospital for a month, in virtually complete isolation as my immune system was severely compromised. After discharge, my quarantine continued for another eight months. I was barred from my office, restaurants, stores or public transportation.
After passing the initial 100-day survival hurdle, I experienced problems associated with graft vs. host disease — a function of the battle in which the donor’s cells sought to destroy my remaining cancerous blood cells. This has affected my mouth, eyes and skin. Moreover, the prednisone I took — while life-saving — severely weakened my muscles, accelerated cataracts and damaged my hips.
That said, I was making progress until January 2015, when I suffered a nearly fatal pulmonary embolism that required emergency open-heart surgery. I’ve had a steady stream of adventures since then, including severe internal bleeding, eye surgeries and my fourth spinal operation. But throughout this odyssey silver linings emerged: I’ve read more; I began taking jazz piano lessons; I’ve spent more time at our place in the Maine woods; and the experience drew Melissa and me closer together as we tackled the challenges together and laughed a lot.
Except for periodic anxiety that I was about to suffer another pulmonary embolism, I worried most about what to do professionally once I could work part-time — and especially whether to resume my commercial litigation career. Ultimately, I decided to devote myself to public service work — the reason I originally went to law school. I’m also spending time on things I rarely had time for before — fly fishing, traveling more with Melissa, continuing my slow progress on the piano, and now writing. While I wouldn’t have wished for cancer, I wouldn’t trade my new life for my old one.
Here are some things that have helped me:
- Try not to waste too much time wondering “why me?”: Although you won’t always succeed, try to march ahead with life rather than looking back and bemoaning your misfortune.
- Develop a routine: Following a daily routine, even if modest, will help you avoid spending your days thinking and talking about your illness, especially during a protracted hospital stay.
- Learn to be patient: You’ll spend a lot of time waiting in doctors’ offices. There’s nothing you can do about it, so find ways to enjoy the time. For me, this meant never going without my Kindle.
- Take advantage of the silver linings: Find and enjoy the good things you’re able to do. Seize the opportunity to “redesign” your life and do things you’ve wanted to do but never did.
- Stay in the game, physically: Do as much as you can, even if that’s not much today and you feel you’re not making progress. It will come.
- Expect that life will be bumpy and unpredictable: Just when you think you’re out of the woods, new problems will arise. Try to take them one at a time and go on — like jumping the waves at the beach.
- Don’t be too proud to seek help; you’ll need it: It would be virtually impossible — logistically and emotionally — to navigate this journey alone. Whether it’s a spouse, sibling, friend or support group, others will want to help; let them.
My stage 4 breast cancer seems like a cakewalk after reading your article.
I might suggest trying meditation and positive visualizations. It helped me tremendously deal with the the unpleasant side effects of treatment, and maybe even to get through it all standing. As you say, not a choice but no regrets. It transforms your life in so many positive ways. And maybe even helps to find peace with mortality. Been healthy now for 31 years.
B. B eautiful expressions of hope and great tips on mastering. The art of living❤️
So glad I came across this blog and the positive attitudes. I am an active 64 year old woman who was just transitioning into part time work from full time management when I was diagnosed with Stage 4 T cell Lymphoma. Though currently living in NY, my husband and I chose Dana Farber for treatment and stem cell transplant. I agree with you about establishing a schedule and exercising. Although I was not too active with working out, hiking, kayaking in the past few years when my job became more demanding I feel like the silver lining is I am reading all the novels I bought and shelved. I’m exercising as best I can (chemo and high dose prednisone weakens you) and I water paint- not very well but I do paint, sketch and I love it. Congratulations on taking jazz piano lessons and fly fishing- very exciting, I walk everyday and graduated from using a wheelchair ( prior to being diagnosed I was pretty weak) to walking 2-3 miles a day, riding my bike which is on a stand, and do yoga and meditation. I love my life which is peaceful now.
The challenges you faced and your attitude have helped me realize that my setbacks will be the new norm. My treatment is on hold as the the response was not what they wanted to see after 3 cycles -though I feel great,. we’re trying something different after a biopsy and other tests. I am going with the flow, one day at a time. My husband is my cheerleader and extremely supportive, can’t imagine going through this without him.. Congratulations Leslie on your many years of good health! This process does help you find peace with your own inevitable death whether by old age or leaving a bit earlier than desired..