A woman with metastatic breast cancer expresses her concerns about COVID-19 restrictions being lifted and shares an idea for those who are immunocompromised to indicate their health status.
On June 15 in my home state of California, all COVID-19 restrictions are being lifted, regardless of case counts. I’m not sure what makes this the magical date. As a person living with metastatic breast cancer and always being in some form of treatment, this makes me rather nervous. From all outward appearances I think I look just like everyone else. With my hair and makeup done, prosthetics on and scars covered, I could pass for a healthy person most days.
On the inside is where the real health issues lie. What healthy people don’t understand are the worries I live with on a daily basis. I worry about being immunocompromised from treatment. With the mask mandates being lifted, I worry about not knowing who has been vaccinated and who has not been vaccinated. I worry about being in close proximity to others outside of my germ family. I worry that the metastasis in my lungs could cause a more severe case of COVID-19 if I were to catch the virus. These are worries only another patient with cancer can truly understand.
Mid-pandemic, I was walking outside near a woman where social distancing was not possible and I had my mask on. She was not wearing a mask. This woman started in on how bad wearing a mask is for our health and how unnecessary they are. She was one of those types of people whose motto is “Everyone is entitled to MY opinion.” I stopped her in the middle of her rant and said rather bluntly, “I have cancer.” She immediately backed off and continued walking as if she had never spoken to me in the first place. It’s these types of encounters I am concerned about in a world after restrictions have been lifted. These are the kinds of people who do not understand what it is like living with an illness that is not always apparent at first glance.
AstraZeneca, the drug manufacturer of Lynparza (olaparib), which I take and has been keeping my disease stable for the past 15 months, has a nurse helpline. Shortly after the vaccine was authorized for emergency use, I called that nurse helpline to inquire about the vaccine and any known side effects or interactions with Lynparza. Do you know what the nurse on the helpline told me? “We have zero information regarding that.” I asked when they would have that kind of information. Her answer, again: “We have zero information regarding that.” And they call this a helpline?
There are still so many unknowns with this virus, even the drug manufacturers don’t have enough data. I plan to continue to wear my mask inside and in situations where it is not possible to maintain social distance until I feel comfortable going without a mask. This could be a very long time. I’m hopeful it won’t be for that long. In the event that it is, I’m thinking I should start a movement for the immunocompromised to wear a special ribbon or something on their mask that lets others know we aren’t wearing masks for no reason. We are wearing masks to express we have a condition which may not be visible on the outside and to respect our personal space.
The research is now showing that the immunocompromised who are vaccinated may not be as protected from the virus and may not develop antibodies. When I had my very first chemotherapy treatment I was told if someone was sick and had to be near me, the sick person needed to wear a mask. With all of the masking we have all done this past year, it does appear that anyone who wears a mask is more protected and is also at the same time protecting others.
I just don’t want to be singled out for still wearing my mask when the rest of the world has long since given them up. So, if you see me out in my mask with a ribbon tied to it, it will be your social cue to give me some space. For now, my mask will continue to be my security blanket and hopefully a reminder to others, especially to those who are healthy, that not all disabilities are visible. As Germany Kent said, “Be kind. We never know what people are going through. Give grace and mercy because one day your circumstance could change and you may need it.”
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