By the books
In addition to choosing my theme for the year, which has helped keep my mindset focused on the future, I’ve also done some reading that has been strengthening, books about bone marrow transplants and leukemia. This was a long time in coming, I can tell you. Until recently, I didn’t feel ready to digest details of others with the same diagnosis. They aren’t medical journals, but first person accounts of cancer battles and what it takes to endure them.
The first book I read, Left on Tenth by Delia Ephron, was recommended by a neighbor at a time near my transplant and it took me another six months to have the courage to check it out of the library. Prior to transplant, I had too many “what ifs” circulating in my brain to read about someone else’s experience for fear that mine wouldn’t match it in whatever way, positively or negatively. I do think each patient’s experience is unique, but when I finally opened the book, I found it comforting to read about the author’s journey.
I next read Between Two Kingdoms by Suleika Jaouad. This was recommended by a friend who said she was hesitant to suggest it because of the subject matter. Again, I was buoyed by reading because I realized I wasn’t alone. Suleika aptly describes the anxiety of living between the kingdoms of health and sickness as living on a fault line, waiting for something to happen. I understand exactly of what she writes.
Finally, I reread Eric by Doris Lund, which I initially read as a child. Written by a mother whose son is diagnosed with leukemia as he is about to start college, this probably wasn’t appropriate material for the age I discovered it; the author came to my elementary school book fair. For whatever reason, this book left an indelible mark on me and it has come to mind at random times over the years. Who knew the connection I would find with it later in life. This book illuminated treatment innovations that began 50+ years ago and are considered standard today. Innovations like platelet transfusions, which have been a key part of my treatment. It also showed how some parts of treatment are unchanged.
In rereading the book, I was struck by Eric’s desire for independence and realized how strong this has been in me. My diagnosis brought a dependence I haven’t felt since childhood. The three months post-transplant when I couldn’t drive and relied on my caring mother to take me to and from all of my hospital appointments seemed never-ending. And yet, I couldn’t have been more thankful for all that she did and how she supported me. With my freedom firmly reestablished, I attend my appointments solo now. The team at Yale is always asking about how Mom is doing and whether she has finished her big needlepoint project, a Christmas tree skirt (not yet, but she is making great progress!).
Reading these books helped me realize how far I have progressed from how crappy I felt last summer post-transplant. While this was an expected part of my recovery, it’s helpful to have this reminder, because in many ways, my daily life hasn’t changed that much. I still have a limited list of destinations outside of my home and wear a mask everywhere I go.
However, I can truly see and appreciate the progress I’ve made. After discharge, I was so weak that I could barely walk up a flight of stairs. Now, I start each day with a walk that includes hills and doesn’t require rest stops. While seeing my doctor less frequently initially made me nervous, I now recognize how reducing the frequency of my hospital appointments is a sign of success. I am also thrilled by the medical significance of exchanging my Hickman catheter for a chest port. The two lumens on the Hickman that hung from my chest for nearly a year were vital to delivering chemotherapy drugs and transfusions. Having this swapped for a subcutaneous port meant Dr Oz was confident in my remission and didn’t believe that chemo or transfusions would be needed in my future. This is a huge achievement.
These books have helped reinforce my mental attitude. Yes, I had complications along the way. Things could have been better and they could have been a whole lot worse. While I’m not completely out of the woods yet, I have real reason for continued optimism. That 80 to 90 percent cure is in my sights, even if it can’t be officially awarded for another year or two. Yes, something else could happen and MORE LIKELY, I can just continue on a path of good health. And that’s exactly where I intend to stay. I’m definitely looking forward to celebrating my re-birthday (transplant anniversary) at the end of this month.