When my wife told me that I had spent a month in the hospital for treatment for acute leukemia, I was stunned. The time lapse had never computed. I had lost track of time, even though the hospital staff wrote every day the date on a marker board in my room.
One of my first days home, sitting in the sun, I asked my wife if I missed Easter. She said I had. She later told me that she and my children had walked with me on the 11th floor at the Vanderbilt Medical Center on Easter afternoon, an experience about which I have no memory, which brings me to a little list of what I’m learning from my experience that may be helpful to others.
Expect crazy talk. My daughter reminds me that one day a friend called. I told him that I had melanoma. She whispered that I had leukemia. I responded sharply that I knew what I had and it was melanoma.
Other conversations were far less kind and humorous. I may not remember them. Yet I’ve been reminded of enough conversations when my family was in the room to know that other conversations must have taken placed. Crazy talk requires an apology to friends who may have heard some when they called. Patients and family members need to accept crazy talk as crazy talk.
Know that good energy comes from friends. Early hospital visits and calls gave me a tremendous lift. Home contacts raised my spirits. Like an athlete who gets feel-good endorphins from exercise, I got and get lots of energy from good friends.
Perhaps that’s why Jesus told his followers to visit the sick. He knew the therapeutic value for the recipient of contact and conversations.
Similarly, I have come to realize that church members who bring food bring something else that is as important as physical nourishment. They provide the lift of connection. They give the recipient and families regular contact with their community of faith, raising their spirits and avoiding over time a sense of isolation.
Recognize the value of cards. I never did. I do now.
For some family members, cards are better than calls, especially after a long day of balancing work and hospital care. For patients, cards with notes of humor or encouragement demonstrate the time investment of friends and divert attention from the self-absorption of treatment.
Talk with some one who has walked a common path. They can help both the patient and the patient’s family to know where they are going and what they might experience.
On my first night home, I woke up every two hours. I was wide awake. We came to realize that my sleeping pattern had been established in the hospital where nurses entered my room to draw blood and to check my blood pressure seemingly every two hours. Had we known what was going on, we would have been more relaxed about this disruptive behavior.
Those who have similar illness and take some of the same medications can provide helpful awareness about side effects, as well as what works.
I had little warning about a number of things—such as nutrition and hydration. It took us a week to discover what I could eat and drink at home. Fortunately, others offered suggestions that paved the path to positive results.
Remember that treatment includes hope.
Upon beginning my second round of “IV chemo” this week, I asked my oncologist if I would experience the same nasty side effects as I did with the first round. He said that he hoped that I would not. I silently questioned his word choice. I found it odd that a scientist of chemotherapy would speak in terms of hope. How could he not know for certain, I wondered?
I had done what many do. I pitted faith and science against one another, rather then seeing them as inseparable fields of mutual understanding. Science is an empirical field of knowledge. Faith, for which hope is an essential component, is often about the unseen. We hope for what we have not seen. Hope, thereby faith, is surely a bedrock of science, albeit too often unacknowledged.
Let go and let God. I knew little about acute leukemia before entering the hospital. But I knew enough, when told what I had, to know that I was in trouble and headed for a lot of tough times.
I also knew that I had to trust the treatment process. I was not in charge. I was in the hands of mostly strangers. In fact, my primary care physician said that “we are taking over.”
Letting go means losing control, forfeiting autonomy and entrusting others. For Christians, this ultimately means giving over everything to God—without bargaining and with acceptance of an unknown future about the treatment outcome.
Robert Parham is executive director of the Baptist Center for Ethics.