By Lela Prewitt
Way back in 1915 Robert Frost wrote his famous poem, “The Road Not Taken”
https://www.poetryfoundation.org/poems/44272/the-road-not-taken. The imagery and sentiment of the road less traveled helps me understand and process what I’ve been through with blood cancer and how I approach my life on the transplant journey.
Those of us who’ve had a stem cell transplant and those who love and care for us are definitely on a road less traveled. More than 50,000 stem cell transplants take place globally each year. Just under 5,000 were reported in the US in 2021. We’re in a bit of an exclusive club. (See https://www.bmtinfonet.org/transplant-article/what-blood-stem-cell-transplant#: and https://bloodstemcell.hrsa.gov/data/donation-and-transplantation-statistics#:, retrieved 07/30/23).
Choosing a stem cell transplant didn’t feel like much of a choice. I was diagnosed with acute myeloid leukemia (AML) in early February of 2021 at the age of 64. A week or so after my initial bone marrow biopsy, when all the myriad and confusing results were in, my wife and I met with my oncologist in Seattle. My prognosis was unfavorable. I needed a stem cell transplant to survive more than a few months. From that visit forward, the goal of every treatment decision was how best to prepare for stem cell transplant. We chose transplant, the road less traveled, because it was the road with hope for the best outcome. We put our heads down, set our feet on the path, and began the long and difficult journey. I had my allogeneic (donor) stem cell transplant on June 10, 2021.
Two months post-transplant, I started my first ever blog, https://www.survivorlela.org/. I was weary but hopeful. I needed to summarize my experience and reflections. Blogging helped me process the sweeping changes I experienced, my emotions and insights, and allowed me to reveal my reality to friends and family.
One thing I’ve struggled with throughout my journey is the idea of normal. Getting back to normal was a big goal for both me and my wife. Post-transplant, we were certain that taking all the medications correctly, monitoring for infection, and getting to clinic everyday—these steps would take us back to normal. I worked hard and gradually became stronger and healthier. My numbers improved and I soon reached 100% engraftment. Discharged at 90 days, we were delighted to head back to our rural home in Port Angeles Washington. There, with any luck, my recovery would be interrupted only by frequent travel to Seattle (3 hours away) for follow-up visits. Fairytale ending, right? Everything gets better and Lela gets back to normal? Not quite.
Eight months after transplant I was still getting better and stronger each week. I’d had some minor chronic Graft Versus Host Disease (cGVHD) of the mouth, eyes, and genitals which was treated with topical steroids…no big deal, right? We’d just returned from a long, wonderful road trip to Southern California to see our families, our first visit since before COVID. All was well. Then routine lab work showed I had cGVHD of the liver. I was immediately put on high dose steroids and tacrolimus, powerful immune suppressants.
Here’s where the bottom fell out of my life. Over the next weeks and months, I got progressively weaker. My muscles couldn’t do what I asked them to. I had trouble showering and dressing. I couldn’t stand long enough to cook a meal, couldn’t climb stairs, turn over in bed or sit up from lying down. Life was clearly not on its way back to normal anymore. I continued to blog and reached out to the National Bone Marrow Transplant Link (nbmtLINK) and other organizations, frantic to connect with other survivors and learn anything I could about having GVHD. I so wanted to understand what was happening to me and when I’d be able to get back to where I’d left off, on the road to normal.
What do you do when it slowly dawns on you that your old normal isn’t possible? I held off on doing the things I loved because I couldn’t yet do them the way I used to, hoping that hard work and physical therapy would get me to familiar ground. It didn’t. Here was a new fork in the road. Do I put my life on hold until I get my old self back or do I accept what is and live well now, accommodating my limitations and disability? It’s a little like loving to swim but not getting into the water until you look great in a bikini again—you could miss out on swimming for a very long time while working to
get your old body back. I grieved over this fork in the road even as I took my first steps toward accepting what is and living well now. It’s taken a lot of creative accommodation, but the effort has been worth it. I had to learn to stop when I’m tired and to carefully manage my energy each day (see spoon theory https://www.patientsrising.org/what-is-spoonie/). I loved to hike and I’m not strong enough to do it so I’ve found accessible trails and I can use a walker with a seat to allow me to enjoy the forest again. I obtained a disabled parking pass. It helps me conserve my energy in order to do what means the most to me. I’m enjoying the essence of what I’ve always loved to do.
It’s a very personal choice. Putting your life on hold until you’re better and doing all you can do to get better is certainly a valid option. However, I’m really glad I chose to live as much as possible in the now. I’m hopeful for continuous improvements and I’ve seen some, for which I’m grateful. I work with what I’ve got now, where I am now to maximize my fitness and to learn tips and tricks for living better with my disability. I don’t knock myself out to get anywhere else. That for me is the road less traveled and it has made all the difference in my life.
I invite you to share the road with me. Let’s exchange our experiences and ideas. My blog is https://www.survivorlela.org/ . You can comment publicly on my posts or reach out to me privately through the Contact Me section and I’ll send you an email.
