Going into the infusion unit at Mass General is never easy, even under the best of circumstances. I know I’m lucky – I go in for a brief period of time to receive a life-saving treatment that causes me very little side effects and prolongs my life. I feel like a healthy person … actually, I am a healthy person. But not everyone else is, and especially not most people in the infusion unit on Yawkey 8. With this truth comes guilt, and it was not until last Friday afternoon that the guilt turned into sadness which turned back into guilt.
I don’t often speak to other patients in the infusion room (it’s a large space with several recliners separated by thin curtains). People respect one another’s privacy. But this treatment, I was speaking to my nurse (the amazing Emily E. on the Yawkey 8, if anyone from MGH is reading this!) about her wedding in Maine. A gentleman hooked up to a bag of chemicals killing his cancer cells bellowed across the way, “Are you from Maine?” This led into a conversation about his diagnosis, the recent good news he received, and a swapping of cancer war stories.
Suddenly, mid-sentence, my neighbor was interrupted by the patient next to him. “Be quiet,” the man next door weakly said. We all looked at each other – my neighbor, his wife, my mom, and I – as we all awkwardly paused. The four of us began to apologize profusely. A few minutes later, the man said, “Not everyone is having a good day!”
I walked away wondering, “Where has my empathy gone?” It was not so long ago that I was sitting in that chair, in pain, wondering whether or not the secret sauce running through my veins was going to work. It was just slightly longer ago that I was in those chairs and beds being pumped with chemicals that were not working. It was only a few years ago I was struggling through more than 50 rounds of radiation. And years before there was the high dose chemo and stem cell transplant. I seemed to have lost all sense of time and place; I seemed to have forgotten from where I came.
I felt a profound sadness for this patient. He must have felt so alone, so scared, and so hopeless. I can only speculate that he was thinking, “Why not me?” or perhaps, “Why me?” I know these feelings well. Not just from his perspective, but from my present perspective. I often ask “Why me?” Not why did this happen to me – been there, done that – but why am I one of the lucky ones. Why did this miracle drug somehow decide to work it’s magic on my body? Then I think, “Why not me?” Why am I not sick, why am I not suffering? Sadness quickly turns back to guilt.
It’s not survivor’s guilt. I don’t consider myself a “survivor” (I’m not even sure I like that label) because I continue treatment despite having no evidence of disease and because the medical research is so uncertain that no one really knows how long this will last. For the moment, I get to be healthy, I get to feel joy, and I get to experience a life not limited by illness. So, why me? I’ll never know. But, next time I’m in the infusion unit, I’ll remember there are those who are asking “why me” under different circumstances. Not everyone has good days on Yawkey 8, and I can never forget that as I continue on my journey.