Day 900 - Survivor's Guilt & Saving a Life
Day 900. Survivor’s Guilt. It’s real, and I’m living it.
Cancer patients often develop special attachments to others who are being treated at the same time they are. For me, this was Emily (see my post here about losing Em) and Chaeleigh.
Chaeleigh and I connected shortly after my diagnosis and quickly discovered many commonalities—the same BPDCN diagnosis, the same SL401 clinical trial, and shared demographics (young women in their early 30s who contracted a rare disease that is predominantly found in 60-70 year old men). We grieved the losses that accompanied our diagnoses—sidelined careers when the rubber was just hitting the road and treatments that robbed us of future biological children.
We developed a camaraderie like no other. Like Emily, Chaeleigh was my sister. They were my fellow soldiers. The ones with whom I had marched into battle.
But last summer, Emily’s Acute Myeloid Leukemia returned following her second transplant. Em gained her heavenly wings last November.
Then Chaeleigh’s BPDCN relapsed at 20 months post-transplant. It was a punch in the gut.
In true Chaeleigh form, though, she continued to give me hope and assuage my own fear of relapse. New treatments got her into remission again. She was eligible for a second transplant and they found a new donor. We were all so hopeful it was going to work.
She made it through the grueling second transplant and was slowly improving. Then in March, Chaeleigh’s lungs started hemorrhaging. The new marrow, which was not a perfect match, was attacking her body as foreign. In April, after weeks in the hospital, graft vs. host disease claimed Chaeleigh’s life.
To say that processing Chaeleigh’s and Emily’s deaths has been difficult is an understatement. Although I am thankful their suffering is finally over, it just doesn’t make sense. And it feels so unfair.
I’d heard about survivor’s guilt at Ohio State, but never experienced it myself until I lost these two. Apparently, the phenomenon happens when a person feels guilty about surviving a life-threatening situation when others did not. It’s a common reaction to a traumatic event and is often associated with symptoms of post-traumatic stress disorder.
Survivor’s guilt is not experienced by every cancer survivor, but for those who face it, the feelings of remorse and grief are very real. These feelings are different for each individual and are not limited to survivors of cancer. For instance, some military veterans experience it during times of war, as do people affected by tragic events such as those that occurred on Sept. 11, 2001.
Hidden beneath survivor’s guilt is the idea that there’s only so much luck to go around and that benefiting from good fortune means that someone else is being deprived of it. But luck is random.
I no longer buy the idea that everything happens for a reason. I didn’t get BPDCN for a reason. Emily and Chaeleigh didn’t die while I still survive for a reason. To quote Forrest Gump—I don’t know whether we each have a destiny, or if we’re all just floating around, accidental, like on a breeze. But I think maybe, it’s both, happening at the same time.
I may never understand why one person lives and another doesn’t, but I’m trying to choose to live a wonderful life as long as I am able. In doing so, I honor those who were taken from us by this terrible disease.
As I remember Emily and Chaeleigh, I can’t help but think about what they might wish for me in the future. I know they wouldn’t want me to feel guilty or be sad or depressed. They’d want me to go on living my life and they’d want me to be happy. I know if the tables were turned, I’d have wanted the same for them.
In that vein, I want to share with you two reasons I’m celebrating today. The first, as I’m sure you’ve already gathered, is that today is DAY 900 post-transplant! I have no words.
Second, through YOUR efforts as part of the Case Cured Crew, we are on our way to saving someone’s life. When we were in Ohio for my treatments, the daughter of our housekeeper (who kept things super clean for us when I had no immune system) registered to be a bone marrow donor at one of the donor drives held in my honor. I recently learned that, in the coming weeks, she will be donating her stem cells to someone who is desperately in need of a new immune system!
Guys, this is HUGE. Our 2017 donor drives are giving at least one person another chance at life in 2019. We are giving someone hope! What better gift is there?
Thank you for this, and for your unending love and support.
xo
Rebecca
