Heroes & Villains by Susan Allott

Susan Allott has competed and placed in many Howl Story Slams in the past. Though she’s not competing in this year’s Grand Slam, the theme inspired her to tell a new story…

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My sister Jan, eight years my elder, is my hero. She changed my diapers, cared for me growing up, became my friend, travel companion, shopping partner, wedding date and confidante. She was also my daughter’s “Boston mom”. The last time she visited in June 2022, she complained about a painful earlobe rash. I, being a nurse, checked it out and seeing nothing, passed it off, secretly thinking she was being a bit of a baby. Throughout the summer she continued to complain of rashes, not healed by her Dermatologist or GP. She didn’t feel “well” enough to visit. 

In September 2023, I called Jan and she confided she had been in Salem hospital for six days. They were trying to control her night sweats and fevers. She had lost 20 pounds over the summer. The rashes persisted. She mentioned Lymphoma. I asked about her CBC . Now Jan is a smart, master’s degree educated retired ESL teacher. She had little medical knowledge and didn’t know what a CBC was. Her husband had similar abilities, with hearing loss in addition. Over the next few days, we talked frequently and I counselled her on what to look for and what to ask. By day 10 she had had all the inpatient diagnostic tests and fevers were sort of controlled. She lobbied fiercely for her discharge home with referral to the local cancer center for the final tests…PET scan and lymph node biopsy. 

I visited Jan in Salem, Mass. on my birthday, September 24^th. She looked good, was in pretty good spirits and seemed her normal self, with a bit of fatigue. Her biopsy and PET scan were being scheduled. I brought her a colorful Skida scarf to complement her expected hair loss.

By the end of October, Jan had a confirmed diagnosis of Hodgkin’s Lymphoma. This is the villain. She pushed for chemotherapy at the earliest availability. On November 8th she had her first chemotherapy at the Danvers Cancer Center. We texted throughout the week. I knew she didn’t tolerate it well. I was worried and asked if we could talk. No response. By Saturday I threatened to call her unless she gave me the best time. She responded in 1/2 hour. She could reply to my questions with one word at a time. She seemed short of breath, and low on energy. Her husband reported her blood pressure had been low, oxygen saturation fair and heart rate high. He was trying desperately to push food and fluids; my sister valiantly refusing to go to the hospital. 

Three days later on November 15th I received a call from Jan’s husband. He had taken her to the hospital the day before. She was in ICU, in DIC (disseminated, intravascular coagulation) with a DNR order. I spoke with her nurse around 2:00 pm after confirming with her that I had ICU experience. Jan had multiple transfusions, had an absolute neutrophil count of zero, with gram negative sepsis and kidney and liver failure. At 5:30 pm that day, and a week after her chemotherapy, she passed away with her husband, two sons and my Boston daughter at her side.

Chemotherapy was both Jan’s hero and the villain. We planned that she would start it in November, feel better right away, be done in April, and attend my son’s June wedding. I believe this intended hero quickly turned villain, though, killing not only her cancer cells, but also her normal infection fighting cells. Faced with two powerful villains, she didn’t stand a chance.

My sister Jan is now my superhero as she lives on in spirit. I see her on the  Atlantic beaches, at the lobster shack and  in  our favorite shops. I hear her in the song of the red winged blackbird. May you all have and cherish such a person in your lives.