This post appeared on Medium.com.
I am not what you would call a good patient. As far as I’m concerned, I’m not even really a good anything: teacher, wife, sister, friend. I do not play by the rules. I am impatient and anxious, a bit nervous and painfully fixated. I can also be driven, compassionate, and nurturing. Thoughtful and introspective.
Many people have asked me what the big "AHA!" moment was after being diagnosed with cancer at 29 years old, just three months after my wedding. You mean other than losing my uterus, cervix, bladder, and large intestines? My hair falling out? Losing forty pounds? I didn’t think there was a big take away or lesson learned. No silver lining, just a temporary inconvenience this time last year (a long surgery, out of work for three months) but then life would go on and this would just be a blip somewhere in my late 20s.
The Christmas decorations were still up when, on 2 January 2015, I was diagnosed with stage 1B cervical cancer. There wasn’t time to worry, my anxiety pushed to the back of my mind as the deluge of doctors, appointments, second opinions, third opinions, failed IVF attempts, and tests began.
It moved very quickly, as it does at that point in one’s illness. Fewer than eight weeks later I was being wheeled into surgery — an eight-hour procedure known as a radical hysterectomy — they would take my uterus, all the lymph nodes in the area, and shorted my vaginal canal. My doctor left my ovaries in the hopes that I would be able to harvest some eggs. I made it work. I did twenty-five rounds of radiation and three internal brachytherapies. I got sick. I dropped twenty pounds. My hair fell out. But I could make it through this temporary exile.
Ninety-two was the percentage — a glaring success by everyone’s standards. Break out the champagne and streamers! They had saved me, and I was more likely to get the flu than have a recurrence of cervical cancer. I had been a bad patient: crying, refusing to eat, often dehydrated and in need of IV fluids, but I did it and after my last round of radiation, I hugged my radiation oncologist and said “see you never” then drove down the shore to begin my summer vacation.
The thing about cancer, whether you beat it or not, I think, is that it never leaves you. At first, it was a quiet voice in the back of my mind — something isn’t right. My husband, my family, friends, and co-workers all assured me there was nothing to worry about. The voice got a bit louder, more persistent.
I went back to work and my students were a terrific distraction. I was able to beat that nagging feeling down most days and focus on my kids, the team I coach, writing assessments — perhaps I was in the clear. However, the day after my first anniversary, my sister took me to see my surgeon for the six-month checkup. On the table, undress from the waist down, the usual drill.
Cold hands, cold lube, cold speculum, and there it was, something “lumpy bumpy” in her words but nothing to worry about. A PET Scan in a few days would confirm what she thought — just some scar tissue from radiation, see you in six more months, honey. Unfortunately, what my scan found was a tumor the size of a Hersey’s kiss tucked neatly between my bladder and intestines. I became incensed. I called everyone.
How could this happen?! In a rush, it began again but this time the feeling of urgency was more palpable. Doctors, nurses, scans, second opinions, third opinions. A permanent double barrel colostomy. Three weeks in the hospital. Partial kidney failure. A stint that runs from my right kidney to my stoma. A bag I can’t change yet, a bag I still cry at the sight of.
Two weeks ago my oncologist called and set up my three-month scans. The anxiety started days before, not eating, pacing the house early in the morning. After the scans were finished, I tried to stay calm and remember I have overcome so much already. And I guess that is the light bulb moment, as we say in the classroom: either way, we had been here before.
In memory of Allyson Marie Schieve, Dec 15, 1985–Nov 16, 2016 (Age 30).