Just had my first round of Cyclofosfomide and Topotecan-- my last hope defense against the Ewing's Sarcoma that I've been fighting for the past seven years. My hope is that this yearlong regimen will give me another remission, perhaps a year or two, and in that time a promising clinical trial will finally come to fruition. For now it seems like a pipe dream, but it's my only hope at extended life. If this chemo doesn't work, it will be palliative radiation and surgery as tumors arise, until they become too numerous and dangerous, and then I will be considering hospice, and my own death.
But for now, I'm back to the middle, back to purgatory. The brain radiation worked-- my scans look promising. I have no active tumors in my body, but it is obvious Ewing's is floating around waiting to take hold again. I will come to Sloan for my daily communion and pray it extends my life.
First day of Cyclo/topo was mild & I didn't need nausea meds. The hardest part is psychological-- back to the infusion suite, the familiar chairs and IV pumps and sugary apple juice. Every fixture the same, yet everything has changed. Most of the nurses I used to know have gone in the last few years (except my favorite, Louise, aka Weezy, who is still here twice a week to take care of me like old times). The most poignant difference is the loss of all of the friends I've met and loved here. My mind goes back to the last chemo year and our little group of young unfortunates, how we'd congregate in the dark, back recliner area and pass the time talking about popular culture, gossiping with the nurses, and complaining about cell counts. They were a light in the middle of those dark days, and they are not here anymore. And not for the reasons I'd like. I'd like to say they've been cured and have moved on with their lives. But that hasn't been the case with anyone I know. Ewing's either kills you, or you survive a little longer until it tries to kill you again. The closer you get to the end of the book, the easier it is to predict the ending (or will there be a twist?).
Most of all I miss M. I haven't been able to talk about her since her death and the way it was handled with her parents. In the last few months she developed animosity towards me because I was in remission while she was dying (at least, this is what I was told by friends). Whatever it was, she never told me, just cut me out of her life. I tried to understand her thought process-- I understand the anger of having your life cut short for no reason, and I understand the frustration of having nowhere to put that anger, no one to blame. It was painful, but I was happy to be the scapegoat if that helped her cope. And then her parents banned me from attending her funeral-- the memorial of my best friend, roommate, ewing's sister. That I could not understand or forgive, I can't even express the pain I felt during that time. I wrote an elegy that I never published. It just never felt right-- as if I didn't have permission to mourn this person who had such an impact on my life. To this day I don't speak with her parents and I have no idea what caused that animosity in those last days. I'm just left with unbelievable pain. And that pain is front and center now that I'm back at Sloan, getting chemo like we used to together, as sisters.
I'm here hooked up to the IV getting premeds as I write this. The idea of chemo for another year doesn't make me cry. Writing about the pain that came with a best friend's death and the rejection I felt from her family-- that makes me cry. I'm not even sure why I am finally sharing this. I've carried it with me for the past year, maybe this will release some of that pain. Maybe I will publish that elegy soon.
I promise I'll write something more upbeat soon. New projects and new developments.
If you look back through my archives, you'll notice I used to joke about everything.
7 years later and I'm a little burned out.
Thank you for all of the well-wishes in the comment section, I wish there was a way for me to respond to comments individually. Rest assured I read them all and appreciate every one. Your love & support have gotten me through, the least I can do is keep writing. Follow me on instagram @kaylinandres if you can, I tend to update there more than here!