It’s that time of year again. As I write it is the official start of summer. It’s been a rainy week and that is predicted to continue however the thunderstorms are indeed the hallmark of summer. Summer for so many here in the northeast is a time of joyful awakening. It’s been cold or dreary, then cloudy and wet, and then summer brings a time of renewal. Many cancer patients watch this from afar. Their time away is no summer vacation.
I met Mark many years ago in the bone marrow transplant unit. A nasty form of leukemia had flattened this vibrant and powerful man. He lay in a darkened room as his wife paced the hallway. She shared much about their lives and also about their adult children. She had done her own statistical research about survival rates and was terrified. I thought to myself as he navigated his treatments that he always seemed FLAT in his bed. After his treatment and discharge I saw him a few months later walking in the hallway of the hospital. He had grown his hair back into a ponytail and also had grown a beard. He remarked how he was only visiting a friend who was having a heart procedure. I reflected and thought of the flat affect I had remembered and now he was once again vibrant man before me.
Although I did my training in all areas of medicine, working in oncology for over 10 years I have come to my own non-scientific hypotheses, conclusions, or antidotal findings. One finding is that there is a rhythm that patients and families develop while coping over a long treatment period. Unlike a trauma or limited illness, the intensity during those times cannot be sustained.
A part of my new patient discussion can be a discussion about coping skills. Let me use the examples I use in my discussion:
If you have a injury, the flu, or time limiting event often people cope in this progression.
“Ugh oh.. I think I am coming down with the flu”, or “I fell and sprained my ankle”, or like scenario.
Regardless of the event, most often the progression of disability is a slow or sudden decline and then a linear progression to what I call the best recovery potential. An example in the case of an orthopedic injury the person may never be as strong as before that injury.
My experience with people in treatment for cancer is that their journey to wellness isn’t EVER linear. Symptoms from treatments, removal from their daily routine for months at a time, etc. all can cause a jagged up-down-up-down-up-down roller coaster of emotion even within a day. The coping skills that we normally develop cause emotional exhaustion. What I often see then is that the person become FLAT in the bed. Hopefully this doesn’t last over a long period of time as a new rhythm develops.
Several years ago I was watching the news when a story came on the TV about a school project for elementary students during the summer. They were to color a gingerbread man style cut out, put him into an envelope and send him on a summer vacation. If he were to visit the beach he could be photographed with a sand pail and write about how the sunscreen stung his eyes. He may have been sent to his grandmother’s house where he got to stay up late and eat ice cream for dinner. At the end of the summer he returned home with a journal of his travels. Stanley was flat yet his adventures allowed him to take on the vibrancy of a human child.
When I look at my patients who have come to the end of their normal push to cope and now lay flat in their bed I think of that flat character. My patients are indeed going on a journey and it is no summer vacation. They may be flat for now however I wait for the day when we all may celebrate they are once again going home.
Authors note: Patients name is not his real name