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Sunday, June 22, 2014

Dealing with loss

Two weeks ago I logged into Facebook and saw the devastating news that a friend had passed away. Her name was Rebekah Furey and I call her my friend because even though we only saw each other twice in person, she has given me so much support and guidance over the past 5 years I've been dealing with cancer. Bekah is the reason I know my current doctor and his fabulous medical team and she was always a beacon of light and positivity for me and so many others. She was super smart and knew way more than I could ever know about our disease--she kept up to date on all the clinical trials and drug protocols that were available. I belong to a Facebook group for relapsed or refractory Hodgkin's lymphoma patients (another thing Bekah taught me -- refractory--a word I had never heard my old medical team use, but it's someone who is resistant to chemo or continues to relapse) and over the past few months several members have passed away. It's always disheartening to hear that another cancer patients passed away, but when I read about Bekah I immediately burst into tears.

Beautiful Bekah
She fought for 8 long years and (like me) desired to hold off on an allo transplant as long as possible. Unfortunately she was also diagnosed with MDS (Myelodysplastic Syndrome, the disease that Robin Roberts had) and an allo transplant is the only cure for that disease. So in May, Bekah made the decision to move forward with the allo in hopes of curing both the MDS and the Hodgkins. I knew she would have a tough road ahead of her, but it was a shock to learn of her passing. Although she was only 30 years old, I thought of her as the "leader" of the Facebook group, as she was the one who informed us when others were sick, spread the news when people received good scans, and even organized a card drive to send to those who needed support. Even when she was hurting herself, she was such a bright person who made everyone in the group feel supported.

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's something I was told at a young age, but find to be true more and more.