Sometime during my battle with Chronic Myelomonocytic Leukemia (CMML), I lost the ability to feel, and by that I mean emotions, not a physical pain. I am sure it was a way to protect myself, as the enormity of it all was just too big.
Others dealing with CMML and approaching a transplant ask how to deal with the fear and everything that goes with it. I’m honest. I tell them I thought I was being strong. Everyone told me that. You are so strong. But the reality is that I wasn’t being strong. I was afraid, just like everyone else, and the only way I could deal was to put the brave face on. But maybe there’s strength in that as well.
I just finished reading “Between Two Kingdoms” by Suleika Jaouad, a young woman’s story about her life with Acute Myeloid Leukemia (AML). While it’s a separate cancer than what I dealt with, it’s actually closer than it may seem. If CMML progresses too much, you can wind up with AML. It nearly happened to me. My CMML progressed to the point I no longer had it, and I was heading quickly toward AML.
Because of that, there was so much in her story that I could relate to: some of the symptoms before being diagnosed, the way it changed every relationship, the loneliness of it all. And all of that is of course beside the only known cure for leukemia: a stem cell transplant.
It awakened feelings in me that I had buried for 10 years. It awakened feelings I didn’t even know I was suppressing. I started to feel again in 2019 while going through counseling, but there was still more to come. The other feelings just weren’t ready to come out yet.
I didn’t even start reading this book because of the approaching anniversary of my CMML journey. I started reading it on the recommendation of my cousin, Karen. And I’m so glad I did. It was life-changing for me, opening me up again.
Aside from the disease aspect, Suleika is also a writer, so I connected to the story on that level as well: the desire to share the story, sitting back examining in it all, and wondering what it means. She, too, started a blog early in her journey, and hers went national, earning her a column in the New York Times with many regular readers, some of whom she meets in person later in her journey.
Truth be told, I didn’t read the story, I listened to it on audiobook while I walked every day. Don’t get me wrong, I love to read, but it’s not relaxing for me as it used to be now that I’m an editor. I just want to fix everything I read. And with autobiographies, it’s great to hear them in the person’s voice. And listening to the last chapter, I understood Suleika so much. I understood her choices with her relationships, her desire to strike out alone, the drive to visit with people who’d read her story and reached out to her.
Most of all, I connected with her feelings of loss: for the part of her life that she lost, as well as her fellow cancer survivors who had passed on. I am and have been a part of a few Facebook groups that deal with stem cell transplants, CMML, and Graft vs. Host Disease, a secondary disease that transplant patients pick up. In particular, it reminded me of a young gal who had AML and was bullied in the groups, as fellow survivors didn’t believe she had cancer. I lost touch with her, then learned a few years later that she passed away after battling the disease multiple times. She is with me … always.
It’s all what brought me back here. Listening to Suleika talk about her blog, I knew I had to pick up this one again. There is much more I have to say. And anyone who knows me isn’t surprised by that. Apparently, she has more to say as well. I decided to research her just now, and I learned that her cancer came back. Here come the feelings again, and now I can admit that, yes, I do have them.
Life, Love, and Loss with LauraBelle 
