LUNG FORCE Heroes
"The world was spinning Mom, and I wasn't even drunk," she blurted, stifling a nervous, awkward giggle. Five months, one week and three days later, my 25 year old daughter died in my arms.
Small cell lung cancer isn't always what you think it is. Some afternoons, a mom feels the hand of a neurosurgeon on her shoulder and hears the words "Your daughter has cancer."
Four days later we were meeting with her new medical and radiation oncologists in her hospital room, prior to discharge. My daughter, Lauren, had gone to the ED just eight days prior, complaining of a 'spinning world' sans alcohol. I'm sure she would have preferred an alcohol buzz to the vertigo and nausea she felt as the tumors, now growing in her brain, pressed against her brain stem, rendering her woozy, wobbly, and wondering. And now these oncologists were preparing us for our future of life with Small Cell Lung Cancer.
Surgery removed the largest tumor on her brain stem, which had spread to her brain from the original origin - her lung. SCLC had also spread to her lymph node and, upon early scans (and later proving to be true), possibly to other areas including her ovaries and other areas of her infested body. "Two to three months without treatment, and a year would be an overestimation," was the news delivered upon my direct request for prognosis.
"25 years old. She has a 3 year-old daughter. How can this be?" I begged. My questions couldn't be quieted, and in my head space I needed to be Mom, not a nurse, in that moment.
The moments soon came, with my 'caregiver face' on, to facilitate getting whole brain radiation for the innumerable tumors in my daughter's brain. 22 years of being a nurse and end-of-life caregiver/companion didn't quite prepare me for the angst of helping my 25 year-old through this. She endured chemo and injections and infected ports, whole brain radiation and chemo and various tortuous tests. She HAD to fight, she wanted to fight, she told us so. So we pressed on! She had a 3 year-old daughter, a new husband, her sister, her parents. She couldn't NOT fight until she couldn't fight.
Sometimes, leaning into the NOW is the best option for people. When Lauren could cross her bucket-list dream of an Alaska cruise off her list. When she had enjoyed one more garage sale with her devoted sister, buying things neither of them needed but for the sake of the negotiation. When she recognized that treatment was hurting her body more than helping it; it is at that point that she planned and communicated her needs and desires in advance, while she was lucid, eager and "well" proved to be a gift beyond measure.
As her chosen Health Care Power of Attorney (and that she had completed her Advanced Care Directive, describing what she would want for HER body in the last stage of her life [try discussing THAT with your daughter over the dinner table!] ), we even went a step beyond in our communication - in her lucid moments.
Wanting to take her last breaths at home if possible, what did she want her room to smell like? Did she like foot massages or was touch contrary to her liking? Did she prefer a particular type of music, art on the walls and color of sheets? Who would she like, or NOT like, in her bedroom?
Looking back, this was perhaps the greatest gift I might ever receive in my lifetime ~ the gift that I KNEW, from her own lips, how Lauren wanted to live her life on her terms, even up to the end. It is a gift that my daughter communicated her health care treatment desires so completely and thoroughly that I've never lost a minute of sleep thinking I had made a wrong decision with her doctors, as every decision was based on those care criterion which she had expressed. It is a gift now to be able to spread her ashes around the world, still experiencing traveling with my girl who wanted as much.
It was a gift to her - knowing and trusting that she would get what she wanted for her body/mind/spirit in her final moments and even after her death, because she communicated it and trusted that her loved ones would carry out her wishes.
We were able to give her the gift of honoring what she wanted: cinnamon candles in her room, decor 'just so' on the walls, her hot pink and green striped teenage bed sheets that she loved. People surrounding her, telling love stories of experiences together with our girl, her grandma rubbing her legs as she took her last breath. I repeated that she mattered, made a difference and that we would be sad but will be okay and would care for her daughter. I even got to hear, in advance, that she didn't really want to talk about the process of dying as long as she wasn't in pain, but rather preferred to envision herself pain-free "on a beach, with my (deceased) grandmas, with hot men and margaritas."
Our late-night communications in those moments of lucidity were indeed gifts for her and for those of us carrying on her legacy.
Sometimes cancer therapy means treatment and therapy and fighting and clawing for more time and love and experiences and life. And sometimes it means a short-term and longer-lasting therapy through communication, so that the patient and the people who love that person know that they did every little and big thing that they could in order to have comfort, care, trust and love.
Fighting your fight is yours, my new LungForce friend. YOUR concern and experience and test results and therapeutic response is unlike anybody else's! You have the right to ask questions, dive deeper and ponder. I wish you the very best as you absorb as much as you can and discern what's right for you as you live with Lung Cancer.
First published: January 7, 2020
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Hero stories are the point of view of the Hero and not necessarily the American Lung Association. The Lung Association does not endorse any specific provider, facility or treatment.