The Girl Who Lived

How do I start? I haven't even thought about updating this blog in a long time. When I was in the midst of my transplant, when I was diagnosed with leukemia, I didn't imagine a time when it wasn't in the forefront of all of my thoughts. It was life defining. The center of everything. And now its not. Not exactly. Its still a big part of my identity. My trauma. But its not everything I am. Not anymore. Today marks 5 years since my stem cell transplant. There are a lot of things I didn't say. A lot of things I didnt share while I was in the hospital, and shortly after. Nothing groundbreakingly important, but just stuff that I would have liked to know beforehand. And I read every account, every blog that I could find so that I would know what to expect. Here are a couple of things that surprised me: - After I was released from the hospital my skin turned a weird color - dark - in the places that I sweat. Under my arms, between my legs, under my breasts. It faded away but it took a few weeks. - I was only 38 when I had my stem cell transplant. I expected that I would no longer have my period afterwards, but I did. For nearly 3 years. - My hair is just not coming back in well. Its sparce and fine, and I cant get it to grow past my chin in the front. I think it was the Busulfan. Im not sure it will ever grow back and be long like it was before. Its not horrible, but its not good either. I feel silly for being so vain about it, but I feel like its just one more thing lost. One more thing sacrificed. - Many of the doctors at the hospital praised me, and asked me what my secret was for doing so well when I had my transplant, and I think most of it was luck, but part of it was knowing what to expect, and not feeling sorry for myself. I couldn't be around people that felt sorry for me, because then I would start to feel sorry for myself, and that was unacceptable. I couldn't have made it emotionally if Id spiraled into depression. - After my state disability ended, I applied for SSDI and I was denied. Twice. Even though I was in the hospital for nearly a month, and required to live in Los Angeles for a month following my transplant, and then had numerous complications including debilitating joint pain, the reviewer decided that I was not disabled. I had to get a lawyer, and was finally approved nearly two years after my transplant. - I used to be any easy stick for the phlebotomist, but I now have so much scar tissue that its difficult to find a place to draw blood. Theyve hit a nerve twice, so theyve now pretty much moved down to my forearm. - I still see my oncologist every 3-4 months. And I dread it. Thinking about it makes me sick to my stomach. Going there, even though my gvhd is stable and my treatments haven't changed, takes everything I have in me. The horror. The horror. (But kinda, really. I think I have a bit of PTSD about it all.) - Cancer is so expensive. We've probably spent close to $100,000 between medications, treatments, infusions, travel, and doctors since I was diagnosed. And all of that is WITH health insurance. Those are just some of the things that I don't think that I explicitly shared. Its now been five years since I've had cancer. I take more medications, I experience more pain, and I have lower expectations now for myself. I feel like Ive aged quite a bit in the past five years. Pain will make you old fast. I know that a lot of people celebrate their "new birthday" but mine, like my real birthday actually, makes me feel a little bit melancholy. A little bit sad. And I think thats ok. Its okay to be sad for the things that I've lost. It doesn't mean that Im not grateful to be alive. Five years down. Many more to go. ("Lord willing and the creek dont rise." Amiright?)