This is Part Four in a five-part (Read Part I, Part II, and Part III) series from empowered multiple myeloma patient Lisa Hatfield. In Lisa’s candid and compelling telling of her cancer journey, she shares her story from diagnosis in 2018 to how she lives well with cancer in 2021. Lisa provides thoughtful feedback about becoming an empowered patient and the value of Patient Empowerment Network as a resource, and she offers her advice to anyone newly diagnosed with cancer: Learn, Breathe, Feel, Share, Live, Connect, and Hope. In Part One Lisa tells her story. In Part Four Lisa continues to share poignant and powerful advice based on her experiences one breath at a time.
“You have cancer.” It takes your breath away, this phrase. Personally, the “limbo window,” from diagnosis to commencement of treatment was the most challenging. Uncertainty debilitates, terrifies, suffocates. One day at a time is too much to fathom. Take one breath at a time. Work up from there.
As I stood up from the exam room stool to leave, Dr. Mike handed me two papers. A prescription for anti-depressants and a prescription for anti-anxiety medications. “You’ll need these,” he said. I didn’t feel depressed or anxious, just numb and hollow. My only thought was whether or not I’d be around to see our daughters graduate. Given the prognosis and life expectancy for myeloma, that prospect seemed unlikely. No anger, no sadness. Just numb and breathless…again.
Shock was the first emotion. Each visit with a new provider, first the neurosurgeon, then the radiation oncologist, medical oncologist, stem cell oncologist, amped up the shock. The final cherry on top was the financial coordinator. The stem cell transplant price tag is $350,000 to $600,000.
A cancer diagnosis and accompanying uncertainty surrounding treatment, prognosis, and outcome, result in overwhelming waves of shock and fear. As the shock begins to wane, denial and questioning swiftly ride in, followed by anger, frustration, and sadness, in no particular order.
The grief cycle, usually reserved to describe feelings associated with losing a loved one, can also be applied to a cancer diagnosis. With a cancer diagnosis you lose your life routine as you knew it, and often lose hopes, dreams, and expectations. Cancer is terribly disruptive. Cancer patients feel shock, denial, anger, despair, depression, and acceptance, often sliding quickly from one feeling to another. There is no timeline for grief. Don’t feel obligated to create one. Just let yourself feel. No judgement, no time limits, no guilt, no apology. It’s okay to feel.
I bought a self-serve ice cream machine in July. It’s a full-size, commercial grade machine on wheels and is parked in our garage. Not sure if it was the chemo or Covid isolation or the less-than-good news appointment I had that day that led me to pull the trigger on purchasing a used machine. Maybe it was the resulting desire to live every moment that cancer patients feel as we struggle with medication side effects, endless appointments, and the loss of life’s routine. Or the desire to deeply inhale every breath of life.
Anyway, the money spent on the machine was only a fraction of what we would have spent on a cancelled vacation. Once a week, we sanitized, set up, and filled the machine with vanilla and pineapple soft-serve mix (yes, it has a “twist” option, too). On our driveway, we could socially distance while enjoying ice cream with friends and neighbors. Ironically, chemo side effects seemed to lessen each time we started the process of setting up. I can’t wait for the weather to warm again.
When you’re feeling well, think of things that energize you. Past or present. Mine was memories of Dole Whip at Disneyland. It can be anything. Watching movies, sitting on a beach towel with a picnic, watching kids run around the neighborhood, going for a walk, writing, the ocean…the list is endless. Identify at least one activity that you can do and make it happen even if it requires soliciting the help of others and making some adaptations.
Live. As often and as big as you can.
Read Part V of Lisa’s story here.