The Bag or The Box
I don't think I cried immediately when the new doctors at Sloan told me my cancer was back less than a year after treatment; I suspect I already knew deep down. Despite the comforting words of my husband, friends and family, I had this nagging in the back of my head -- and later in my actual lower back -- that something wasn't right.
I didn't cry until, at 29 years old, with my mother and husband in the tiny consultation room, the impeccably dressed though weathered-faced surgeon, less than 10 years older than I said, "We're going to have to take out your bladder. We'll take your intestines, too."
I thought, Would you like my dignity along with those?
"And you'll wear an ostomy bag for the rest of your life, maybe two."
What about chemo? More radiation? Trials? Immuno-therapy? These are the reasons you go to the best hospital. These are the reasons we packed up and drove to Manhattan. Surely, there was some other way?
Celebrating my independence from radiation last summer
There wasn't. And on the day before I turned 30, I endured a 14-hour procedure to cure reoccurring cervical cancer. While I grew to think my lapro-hysterectomy scars we're "kinda cute" over the summer, these doctors gave me a mid-line incision from my breast bone to my pelvis, carefully outlining my belly button. They chose my stoma sight -- I still cringe at the word STOMA -- because they didn't want to cover a tattoo on the other side. As if that even matters, now? As if that life would ever be mine again?
Three weeks in the hospital. Failure in my right kidney. Packing wounds for months. The usual post-op complications for this type of surgery, I was assured. But three months out, I do not share the upbeat optimism of my fellow ostomates -- those with UC or IBD.
My life is, in fact, not getting better. When, before, I had no symptoms, now I search for a bathroom everywhere I go. I agonize over my bag. My thinning hair, my transparent skin. How will I gain the 40 pounds back I lost? How will I go on with my life? How will I work, or travel, or enjoy anything ever again?
There is no relief here, yet. Only worry.
Life post-surgery, six sizes down and a double barrel colostomy.
I decided to start sharing my story because today is my first post-op PET scan, and I am afraid of what they will find. Perhaps I haven't made as much progress coping with my new appliance (can't change it myself yet, leads to many tears and much agony) if I were sure that I am cancer-free. But, will I ever be sure, I wonder?
As I sit here in the waiting room, again -- fielding calls and texts from loved ones urging me "not to worry" or that we "got it this time" -- I can't help but think, That's what we said last year.
A version of this post originally appeared on Medium.