What a strange time this is! Most of us are at home. Day in, day out. Some alone. Some with family. For most people, the thought of getting covid-19 is frightening. For those of us with cancer, it is terrifying. Here are some experiences over the last ten days.
- Hair Loss – most people get their head shaved. I planned to allow it to happen naturally, until I started finding hair everywhere and realized what a mess taking a shower is. I decided to go and get it shaved – until I remember the coronavirus. No point in going somewhere just for that. Back to watching it happen gradually.
- I start wearing a mask when I go to Sibley Hospital.
- Sign-in procedures at Sibley on Tuesday, March 17: screening just to get into the hospital – they wiped the pen before giving it to me to use; sign-in for genetic testing – they gave me a tissue to hold the pen; sign in for the PET scan – nothing special. I tried to use a tissue until I realized I had many forms to fill out and gave up. The geneticist took one look at my mask and wiped clean my insurance card before returning it. That was nice.
- Sign-in procedures at Sibley the very next day for my hydration therapy: no pens at all. They signed me in.
- One nurse says she wants my mask since it matches the color of their uniforms. Another nurse says my mask looks “sexy.” Hmmmmm. (The infusion nurses are very nice.)
- A nurse sees me using their wipes to clean off the table in my room. She points out that I need to wear gloves to use their wipes. Oh, maybe that is why my skin is now stinging?
- With my mask on, the Face ID on my phone no longer works.
- Saw the bill for my first infusion – over $14,000. What if I had a job that disappeared due to coronavirus and I lost my insurance?
- I wore my mask when I went to school to video some experiments and freaked out a few students who saw me. Actually, I saw no evidence of them being freaked out. Our students are very polite.
- I read the PET scan carefully and realize it says my “heart is enlarged.” One of the chemo drugs is especially hard on the heart. Before starting chemo, the echocardiogram showed that mine was healthy. And now it’s enlarged? After just two infusions? I message my oncologist to see if there are ways to protect it or if something should be adjusted. She says that PET scans are not necessarily accurate in this regard, and she doesn’t want to order another echocardiogram since “at this point it’s much more important to minimize your stay in the healthcare system.” Wow.
- Home now for the foreseeable future. Isolated. No more hugs from anyone.
- Friends leave meals for me in seemingly furtive ways. Is this what it feels like to do a drug deal?
- I read an article in the Washington Post this morning that says that people with cancer have a 5x higher chance of dying from covid-19 than others. And when rationing of ventilators begins, older cancer patients would probably not be very high on the list. I can’t get this. I don’t dare go out anymore.
- I should give up my hydration appointments (where they infuse saline solution directly into the blood stream for two hours). They were helpful in making me feel better. All appointments besides blood draws and infusions will be via virtual visits. Seems complicated to set up. I haven’t done that yet. (Since I live in Maryland, my oncologist must be licensed in Maryland. I don’t even know if she is. Sibley is in DC.)
- The feeling of isolation is overwhelming. I better understand my friend who rarely goes out because she has ME/CFS (chronic fatigue syndrome). I feel much better once I start having video chats with my colleagues. Just being able to “see” friends is so helpful.
I hope you are all surviving this time as best you can.