Mary Ann Kurpinski (patient)

“I don’t think you realize that you probably misspoke … that suggestion of hospice/palliative care in my home. Truly, that was meant for the guy in the next treatment room. Really … I’m okay, I’m doing okay. Got it? I know that you hear everything I am saying … just look at me from the outside instead of the inside — out with all of that lab work, infusion port, chemotherapy, blood transfusions, dynamic phototherapy, external bile drains with brand new metal stents, daily dressing changes, jaundiced skin, and wow, the big-time weight loss and the forever-rising blood ammonia level …”

For sure, I did not see “the big C”— cholangiocarcinoma &mdash; coming. Never really sick, I worked every day as a physical therapy assistant at our local hospital and loved it. Saving for and planning a retirement move to Michigan. My daughter, graduating from college and close to completing her PhD in biochemistry, was studying viruses that flip over to the big C &mdash; ironic, isn’t it? My estimated time on earth was four to seven months, confirmed by my physician team and Google. I was speechless. It really takes everything you have to wrap your brain around that one. I realized that I was not the only patient with cholangiocarcinoma in the world. I know that you are never supposed to say, “Why me?” But I was saying, “Why anyone?” Was it something I did? Something I ate? Or did I have an unknown exposure to something bad? So I put it in the category of Mother Nature and her gift of random selection.

Time progressed, and the cholangiocarcinoma was becoming more invasive, and I was becoming weaker and weaker. The doctors recommended home care, and I needed a palliative care nurse to help. So it was a team effort that helped me to begrudgingly say “Yes” to the palliative care nurse, while letting everyone know that my husband, daughter and sister would still be my primary caregivers.

The agency sent Sharon Bird, RN. It actually was an unbelievably wonderful match for personality, demeanor, respect, and the maximum amount of patience, kindness and experience caring for patients with end-stage cancer. The match of nurse and patient was either extreme good karma or the angels just choosing her and sending her to my bedside. Sharon was the epitome of a brilliant, inventive, proactive, kind and intuitive professional palliative care nurse. And she was my nurse! On a smaller scale, she was a bit like me. We were the same age, both moms and wives, both working in the medical field, both with copper red hair and the complexion to go with it, and, most importantly, she believed in angels.

Sharon gave me permission to grieve, to not blame myself and to hold on to each day and moment. These are priceless gifts that she brought to my bedside. She honored my request for no hospital bed — you know, none of that stuff/equipment that makes you feel like you are sick.

She preserved my dignity, my self-esteem, and she helped me hang on because she knew that I wanted to be there to see and know that my daughter had received her PhD. We were all on the same page on the “joys of proud motherhood.”

She helped manage my pain, my symptoms and my extreme fatigue. This was a great relief to me. It gave me a chance to regroup/repurpose/reframe the energy I had little of. We talked about living in the moment. Every visit we talked about the angels that only I would see — little did Sharon know that she also my angel on earth.

Postscript from Linda Nabozny: My sister Mary passed away on July 4th, with her family at her bedside. The morning of her passing, her daughter received a confirmation from her advisors at the university that her doctoral dissertation for the completion of her PhD was accepted. My sister was somewhat awake when we told her the good news. She turned her eyes to her daughter and moved her lips in a whispery voice to say “congratulations.” Sharon Bird, an extraordinary healer, not only for my sister but for our family. Thank you. We will never forget you or your ability to provide healing in the multifaceted diagnosis of cholangiocarcinoma.

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An Extraordinary Healer essay honoring Sharon Bird, BSN, RN [ THOMAS JEFFERSON UNIVERSITY HOSPITAL IN RADNOR, PENNSYLVANIA ]

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