It’s not a cancer journey unless someone is taking me on vacation

The bag or the box.
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I don’t think I cried immediately when the new doctors at Sloan told me the 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 ten 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.

Allyson Marie

Three months before my initial diagnosis with some babes I know.

Screeching halt. 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? There wasn’t. And on the day before I turned 30, I endured a fourteen-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 site. 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 inflammatory bowel disease (IBD). My life is, in fact, not getting better.

When, before, I had no symptoms (cancer, the silent killer?), now I search for a bathroom everywhere I go. I agonize over my bag. My thinning hair, my ghoulish skin. How will I gain the forty pounds back I lost? How will I go on with my life? How will I work, or hike, or enjoy anything ever again? There is no relief here, yet. Only worry.

Allyson Marie

Celebrating my independence from radiation last summer.

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.

Allyson Marie

Last week, 40lbs down and my house looks like a medical supply store.

In loving memory of Allyson Marie Schieve, Dec 15, 1985 – Nov 16, 2016 (Age 30).