Bekah's blog True Beauty Never Hurries was super informative for Hodgkin's patients and really showcased the type of person she was. She always laid out all her options and really sought to make her readers understand what she was going through.
There's this thing in the cancer community called "survivor's guilt' and while I've always assumed it was for people who achieved remission and went on to live long and happy lives, I've realized it can be for anyone who gets to live another day on this earth while someone else doesn't. Although I've experienced some horrible things during this cancer journey and I mourn for my old life, because so many things will never be the same, there are people who have had it much worse. And while I do feel guilty that I look so healthy and have had a relatively easy time with most treatments, with each passing of a fellow Hodgkins warrior, I can't help but get scared and wonder when my time will be. I have seen so many young people with so much life to live pass away from this awful disease, that I can't help but think when my turn will be. Once again, I think "why me?" why am I still here, alive, living a fairly normal life? Is it only a matter of time before cancer takes me too?
Last night I spent a few hours reading Bekah's blog and because she was so close with so many warriors, she often posted links to their blogs. So I clicked on the links, only to find out that so many of them have also passed away. It's devastating and scares me to my core to think that one day someone could write a post on my blog that I passed away. Part of me wants to know where I will be a year from now, 5 years from now, but part of me doesn't want to know. So much can happen with this disease and everyone's body is different.
As for me, since April I've been in a holding pattern. My insurance company didn't want to approve Revlimid and made my medical team jump through hoops to get it approved. So I have been suffering with the side effects of the disease without a new treatment. The worst is the constant itching and drenching night sweats every night. I never had the itching side effect when I was first diagnosed, so this has been so frustrating. Literally, my entire body itches and I want to jump out of my skin. And then the night sweats wake me up every night, leave my sheets soaked and make me feel disgusting every morning. Needless to say, I haven't been sleeping very well. Thankfully a few weeks ago it was finally approved, and I just started taking the meds, so hopefully it stops these side effects soon!
I have thought about Bekah a lot over the past week and continue to be in denial that she no longer walks this earth. I can't justify her death or make sense of it at all, and I can only imagine how her sweet family feels. Life is not fair...it's something I was told at a young age, but find to be true more and more.