By Sue Himmelrich
When the coronavirus changed all of our lives, I already had a road map for survival. Mostly because I have been in isolation before.
In 2004 I was diagnosed with Non-Hodkins Lymphoma. After a six-month course of outpatient chemotherapy, they thought I was cured. They were wrong. The cancer returned and my next step was an autologous (using my own stem cells) stem cell transplant in 2006, which required an inpatient stay at City of Hope until I regained my strength.
During my stay at City of Hope, I created an approach much like my approach to the coronavirus today. I woke up every morning at my usual time, showered, and dressed in regular day clothes. I was hitched to a chemo machine through a tube called a Hickman catheter in my chest, so disconnecting and connecting for my shower was the hardest part. Shampooing etc. was the easiest part, since I had lost all of my hair.
Then, every day, I walked 30 laps around the hospital floor with my IV pole. One of my friends who also had a transplant at City of Hope said they now give little prizes as awards for walking the floor. There were no prizes when I was there.
The process for an autologous stem cell transplant is simple. You harvest your own stem cells through the catheter in your chest, then you are admitted to the hospital for administration of chemotherapy drugs that destroy your blood cells and platelets, and finally you are transfused with you own pre-harvested stem cells on Day 0 (which is actually about ten days after the chemo begins.
The worst time is from admission to day 0. You feel weaker every day. Your throat is so raw that only the softest foods will go down. And in 2006, the most depressing part was that most patients never got up at all. They stayed in bed and almost all had feeding tubes. We all were in rooms with an anteroom, where any visitor washed their hands and donned a mask before they entered (sound familiar?).
Admittedly, I had one advantage going in – I am not a barfer. I rarely vomit regardless of how nauseated (or drunk) I am. Some patients could not keep any food down but others simply approached this admittedly life or death passage in a passive way. And I get it. On day -1 or -2, when I felt the worst, I asked the doctor who designed my treatment if my forced eating and exercise routine made a difference because I, too, was ready to take to my bed. The answer was: of course it makes a difference.
I was disappointed when I was released on day 21 (or +10 in transplant days) that I did not set a record for least time in the hospital. No, a 19-year old who never got out of bed and played video games day and night was released after 20 days. But now I know it’s okay because I learned how to deal with forced isolation.
So I am following the same routine I developed at City of Hope. Get up. Shower. Get dressed. Move around every day, sometimes walking, sometimes gardening, sometimes cleaning. Stay in touch with my family, which is flung across the country. We have a Zoom conference every day from 5-6 pm with my parents in Maryland, my 3 brothers, my daughters, and my nieces and nephews. Even my husband who in the glass-half-full/glass half-empty analogy tends to the glass-totally-empty end of the scale is adapting to the routine.
We all are different with a wide range of coping skills and emotional resiliency. I know that. But I learned the hard way that keeping or injecting some structure in your life – what some call just putting one foot in front of the other – works in little ways to make us feel more hopeful. Maybe it will make it easier for you.
Sue Himmelrich is a Santa Monica Councilwoman
