Joys on the Journey
— This is the presentation I gave at tonight's Celebrate Today dinner, Memorial Hospital's quarterly celebration for cancer survivors —
Four years ago, I was at this dinner for the first time with my sister. It was Volunteer Appreciation Night, and my sister, Clara Fromme, volunteers at the cancer center and I was her guest.
In April of the following year, 2015, I was here again, this time as a newly diagnosed cancer patient.
Between my first time here and the next, Clara had become my official health-care representative. She had taken me to the E.R. when I didn’t want to go, and to untold numbers of medical appointments. My oncologist is a 2 ½-hour drive from here, and Clara and my two other retired siblings took turns taking me to my chemo treatments. My older sister next to me in age, Rose, took off work two days every three weeks to go along to every single chemotherapy appointment.
Thank you, Clare and Rosie, for all of that and more.
At the beginning of 2015, I started experiencing pain in my left shoulder blade and left arm. A few weeks later, as the pain worsened, I visited my family doctor and then an orthopedist. As the pain became more and more debilitating, I made four trips to the emergency room over three weeks; I left with ever-stronger drugs until I was transferred to an Indianapolis hospital. I stayed in the hospital for a week, during which time I was diagnosed with non-Hodgkin lymphoma. The tumor was at the base of my neck/top of my spine and was crushing two nerves.
It took two rounds of chemo — about eight weeks — before the tumor shrunk enough that I could stop taking the strong painkillers I was on. So if you ask me about my cancer journey, the first thing that comes to my mind is the months of physical suffering.
But give me a few minutes to think about it, and I can recall dozens of reasons for rejoicing that took place along the way.
About six weeks after the pain started, and three days before it was attributed to a tumor, my family — my mom, seven siblings who live locally and my best friend Candy — started providing care for me in my home around the clock. That was their idea, and I was opposed to it. In fact, I called it their "goober plan." Given the medication I was on, I couldn’t drive, so those same retired siblings who later took me to chemo treatment took turns driving me to and from the Life Stories classes I was teaching at the time. When chemo started and my oncologist said I shouldn’t clean my cats’ litterbox, a couple of my sisters, my 9-year-old niece Tori and sister-in-law Amanda kept up with that task for me, so I didn’t have to give up my cats. That summer, my brothers and a nephew kept my lawn mowed.
My cancer biopsy came back on Friday, March 20. I saw an oncologist the following Monday; she worked me in as her last appointment of the day. The day after that I was admitted to Community Hospital in Greenwood, and the following day I had my first chemo treatment. After so many weeks of living with pain, suddenly there was an urgency to starting my healing. I still felt horrible, physically — but emotionally, there was hope.
My youngest brother and his family live in Greenwood, and I stayed with them for two and a half weeks after my first chemo treatment, sticking close to my oncologist and that hospital while risk for infection was greatest. Pat and his wife, Tonya, have three daughters. The youngest, Ella, in the sixth grade at the time, gave up her bed for me. Tonya is a nurse, and I experienced her gentle bedside manner: “Let me help you with that, Hon.” “Oh, Hon, what’s the matter?” Also, she is an excellent cook.
My first day at my brother’s house, I had an appointment with a neurosurgeon. My feet were swollen from some of the medication I was taking, so my shoes didn’t fit. I asked Tonya and the girls if they had some I could wear. Tonya pulled out her slip-on shoes, Ella’s size 11 short boots, some tennis shoes and a couple other pairs, trying to dissuade me from wearing the first pair I tried that fit — my niece Grace’s pink fuzzy house slippers. Tonya said I’d get weird looks from the medical staff.
“Two weeks from now I’ll be bald,” I told her. “I don’t care about no weird looks.” (Using incorrect grammar was intentional!)
At the neurosurgeon’s office, the receptionist and nurse both commented that they liked my shoes. So when I headed to the hospital for admission later that day, I shot a gleeful glance at Tonya and put those fuzzy pink slippers on again!
I know I am not alone when I say that I experienced multiple problems with insurance during my illness. Twice, I was sitting in the chair ready to receive chemotherapy and I had to wait while my insurance company looked for proof that I was covered. After one of those treatments, I took the prescriptions I had to fill and went to the nearest CVS — where I was told I didn’t have insurance coverage. The pharmacists made several calls, to no avail. My insurance company said it had no record of me. The senior pharmacist, who had had cancer herself several years before, listened to my sob story, and my sobs, and said she would make an “executive decision” to let me walk out with more than $300 worth of medication that I hadn’t paid for and for which she had no assurance that insurance would pay. Her name was Pam, and at that moment I had never been so grateful to anyone in my life.
It is not news to many of you that losing your taste can be a side effect of chemo. My taste buds shut down for more than a week after every treatment. On April 26 I wrote: “I’ve not been able to taste much for about 10 days. Until today! The cashew breakfast bar tasted terrific! Everything I eat today will be eaten with specific attention to its flavor and with gratitude for working taste buds.”
My crushed nerves led to loss of function in my left hand. I could not touch the thumb and pinky together. With help from physical therapy, I was able to do that again.
I could not lift my left ring finger, so it was unable to clear the keyboard. For someone who makes her living as a writer, that was a big deal. Mobility of that finger has not fully returned to normal, but it mostly has.
The tumor ate away part of the bone in my upper spine. The bone regenerated itself without the need for surgery.
And now, I get to lead a journaling support group here. I am grateful for that opportunity, and for the fact that I kept a journal of my own journey through cancer.
On the very first day of writing in my journal, Feb. 27, 2015, I jotted down a quote from Wendell Berry. I had never heard of this Kentucky poet and farmer before, and I have no idea where I came upon his words. But I am glad that I found them near the beginning of a very trying time in my life, during which I needed them often. He said:
Though you have
Considered all the facts.
Whether you are a cancer patient or not, I’m asking each of you to jot down a few things from your own journeys that bring you joy amid the pain, amid the frustration, amid the hassles of everyday life, for which to be grateful. We’ll spend just a few minutes doing this. Then take the notecard home with you, and hopefully add to it, as a reminder that there are indeed joys on the journey.