Arnie Reed

“I believe caregiving is much under-appreciated. It is much more than sitting beside the patient’s bed.”

I have been a caregiver for two different cancer patients. In both cases I completely immersed myself in caregiving. Leukemia and lung cancer were very different experiences, and of course each patient is an individual and has his or her own ways of dealing with life-threatening diseases.

My wife, Nancy, was diagnosed with acute myelogenous leukemia on April 16, 2002, the day before her 50th birthday, and she died 11 days after her 51st birthday. She began chemotherapy the night of her diagnosis. Each time she had a chemo infusion, she had to remain in the hospital for 30 days at a time because the chemo basically killed her immune system, so that any bacterium, virus or fungus could kill her.  She also had to have prophylactic doses of antibiotics, antifungal and antiviral medications, as well as drugs to counteract their side effects.

I took leave from my job with state government and spent 102 nights with her at St. Thomas hospital in Nashville. I slept in a narrow and uncomfortable cot next to her bed.  I carefully monitored all of her lab results and insisted that anyone who came into her room wash their hands first. One time, I refused to let a doctor see her because he had a cough. I frequently went out and picked up carry-out meals for us from favorite restaurants. Hospital food gets old quickly, and a person with cancer needs nutrition. Her tastes changed with chemo, so I changed what I got for her depending on what sounded good to her. I made her hospital room into a living room, setting up a small stereo and receiver so we could play her favorite music. I made trips to the local video store to get movies she wanted to watch. In the evenings we enjoyed watching reruns of Seinfeld and Scrubs. As get-well cards came in, I taped them to the walls, so that at the end of her stay there was practically no uncovered wall space. I also put up pictures of loved ones – anything to remind us of home where we belonged.

During the first days after her diagnosis, the phone rang off the hook, and I quickly realized it wasn’t good for either of us for me to explain to each concerned caller about her condition, treatment and prognosis. So I unplugged the phone and instead started emailing a growing list of recipients. This too became problematic, because new people would be added to the list and needed to catch up. So I created a website with which to communicate her progress to family and friends, sending out the link when there was something new to report. Now, thankfully, there is CaringBridge for that purpose. I spent a lot of time researching how blood is made, what leukemia is and how the various medications worked. It soaked up a lot of my excess energy and helped relieve anxiety among the recipients. I have found that ignorance breeds fear, so the more you can learn, and the more you can educate others, the less fearful you and they are. I also saw a therapist, with whom I could talk about issues that were difficult or improper to speak of in front of my wife, such as my concern about what happens to me if she suffers or dies.

After her first 30-day infusion, the doctor performed a bone marrow biopsy, and the next morning we were told the lab results showed she was in remission. So I went home to prepare for her homecoming but was interrupted by a call from the doctor informing me that a mistake had been made, and that she was not in remission. He told us another round of chemo must begin immediately. But that night Nancy decided she’d had enough, and the next day she came home under Hospice care. After a couple of weeks at home, her blood counts began to return to normal, and she felt like taking another go at it. So we went back for another 30-day round of chemo. After a brief respite at home, she was given a third “consolidation” round of chemo.

After Nancy’s consolidation round, we had about six months of “normal” life, during which we took a vacation. I had exhausted my annual leave and sick leave, so we couldn’t take extended trips. She went in monthly for blood tests, which showed her in remission, but after the first of the year, she got an earache that got worse and worse. Medication and tubes put through her eardrums didn’t alleviate the pain.  Her oncologist brushed off my suggestion that it had something to do with her leukemia. Eventually we abandoned the ENT near where we live and I took her to Nashville to see the ENT group that had seen her in the hospital. They immediately ordered a CT scan, which showed a mass behind her mastoid bone. Her blood test showed her white blood cell count was only 17 – a sure sign the leukemia had come back. After a blood transfusion, she had a mastoidectomy, which confirmed a chloroma (mass of leukemia cells outside the bloodstream in the mastoid). The surgery took care of that pain, but by then Nancy had only a couple of weeks to live. She died on April 28, 2003.

My second wife, Suzanne, had a very different experience when she was diagnosed with advanced small cell lung cancer. Her chemotherapy infusions were done on an outpatient basis, and her only hospital admissions were during the last two weeks of her life, and of course I spent those nights in her hospital room. You don’t get much privacy in the hospital, so the caregiver must get used to living in a cramped space, remaining cheerful and upbeat.

At the outset of her diagnosis, we decided that since her time was going to be short, we would do our “bucket list.” We took wonderful trips, including a 3-week driving trip down the west coast of Florida to Key West, then up the Atlantic to Charleston and back to Nashville via Asheville, NC. During our trip we swam with dolphins. (Dolphins Plus in Key Largo offers free dolphin swims for cancer patients.

We spent two weeks in the West, in Wyoming, South Dakota and Colorado, and visited with friends and family. Then we spent two weeks in Norway, during which we stayed with friends who live out in the country and who took us on breathtakingly beautiful drives every day.

So we stayed on the move, bringing whatever supplies she needed to deal with chemo side effects including Depends, rubber sheets and of course medications of all kinds. I tried to avoid overly long daily drives, making sure we had plenty of time to rest and enjoy each place we visited.

Earlier in 2015 we visited a friend in Madison, WI and friends who live south of Buffalo, NY. We also took frequent trips to visit her family in the Florida panhandle. Suzanne died on January 3, 2016.

I do have a few tips for anyone who is caring for a cancer patient:

  • Cancer patients under chemotherapy treatment often develop “chemo brain,” which makes it easy for them to forget which medications to take or when to take them, etc. So one of my jobs was to keep a spreadsheet up to date with the meds Suzanne needed to take. I built the spreadsheet myself and we printed it out before each doctor’s appointment, instead of filling out a long list by hand. Thankfully, Vanderbilt is well integrated so all of her providers there had access to the same list of medications
  • Self-care is important for caregivers. It’s easy to focus all of one’s attention on the patient. But caregivers need to keep themselves physically and mentally healthy if they are to be effective. You don’t want to get sick and pass something onto your patient. My primary care physician wrote me a prescription for Valium, which was helpful during those times where I would get overwhelmed with anxiety and might have trouble sleeping or just coping. Caregiving is a marathon, not a sprint.
  • Often, there are things that caregivers need to talk about that we don’t want to or shouldn’t say in front of our patient. Suzanne and I were both active in Gilda’s Club with weekly support groups. I found the caregiver’s group very helpful, because caregivers have a different set of issues than the people for whom they are caring. We enjoyed attending a lung cancer support group as well.

I believe I kept Nancy alive longer because of my constant attention to her needs. Suzanne’s oncologist said her remarkable longevity (twice the median) was in large part due to the role I played in keeping her spirits high. I believe caregiving is much under-appreciated. It is much more than sitting beside the patient’s bed. To be effective, the caregiver must learn as much as possible about the disease and treatments, then put his or her own anticipatory grief aside for the good of the patient.