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Patient Experience: Cancer & COVID-19

This Q & A includes a description of one patient’s experience receiving treatment for both cancer as well as COVID-19. This experience may not be typical, similar or expected for anyone else. Please consult with your medical team and oncologist with any specific questions related to your medical needs and COVID-19 testing.

Please take time to read below a personal account of a patient’s experience with COVID-19… please note, everyone’s experience with the impact of COVID-19 can look and feel different. Important guidelines of staying in close communication with your medical team, accessing and utilizing psychosocial support and engaging in adaptive coping mechanisms are essential in deepening our emotional resiliency and feeling supported.

Tell us a little bit about yourself…

My name is Amanda. I’m a 49 year-old company executive and mother of an adult son. I was diagnosed with advanced breast cancer on May 1, 2019 and have since been through four months of chemotherapy, a bilateral mastectomy and seven weeks of radiation. My final treatment was this past Valentine’s Day (though I remain on oral meds and injections). I also happen to have COVID-19. I wanted to share just one firsthand account of what it’s like to have cancer and COVID-19 with the full understanding that everyone’s experience is different.

What led you to think you might be positive for COVID-19? What first steps did you take?

First I should say that I almost didn’t contact my primary care doctor. I didn’t really feel that sick nor did have the “classic” symptoms. But given my fiancé had flown back from London on March 9th and I started feeling a little flush and and achy on March 13th, I thought I should email her as a precaution. I never really ran a fever but I did become short of breath within a few days. So I emailed her the evening of March 16th. She called me the next morning and said I should be tested and that I would receive a call within a day or two. Not surprisingly, it took a little longer. While awaiting an appointment, I continued working from home – Zoom meetings, conference calls and so on. I was tested on March 23rd and received the call to say I’d tested positive on March 26th.

What was the process like when you went in for testing?

It wasn’t what I expected. I thought they would take my temperature, ask questions about travel or exposure to COVID-19 positive individuals. Take notes. That’s not what happened. We pulled into the parking lot and a security guard directed me to the front of the building where two women in masks and gloves checked off my name, handed me a mask and told me to put my hands in my pockets and keep them there. I was whisked in, swabbed twice, and sent out. I recently heard our president say how unpleasant the procedure is but that sounds very silly to someone who has been through 308 days of cancer treatment! It made my eyes water a little and was a tiny bit uncomfortable. On
my way out, they said I’d get a call if my test was positive but if it was negative, it would just be posted to my result page of the UCLA health portal.

Following your test results, what was the recommendation to care for yourself at home?

The recommendation was to stay home and rest. If my breathing got worse (which it did), my primary care physician said to go to the ER (which I didn’t), otherwise, to check in again every three to five days. That was essentially it.

In whats ways did you engage in self care at home?

I had been working until my breathing became too labored. I then stayed in bed for several days, drank a lot of water, took quite a few hot showers and just focused on getting well.

What part of this experience was most challenging?

A little less than two weeks after my first symptoms appeared, I completely lost my sense of smell and taste (though was never congested). I couldn’t taste fresh from-the oven chocolate chip cookies nor could I smell the polish when I painted my nails. I’m surprised at how frustrating and annoying that’s been. In fact, five weeks later, I still have very, very little sense of smell or taste. The other challenging part is to feel sick for so long. I just went through the marathon of cancer treatments so I was surprised how upset I felt at being breathless and fatigued for almost five weeks. I was really sick of being sick. Finally, the unpredictability of the virus was a little scary. Just when I thought I had turned a corner, I would be hit with a debilitating bout of fatigue.

What have you found helpful to help you cope during this time?

So this sounds a little strange, but I feel like some of my fellow cancer patients/survivors/thrivers are going to relate to it. This pandemic has made me feel like a part of something bigger (note: in no way am I marginalizing this serious and deadly pandemic). I feel included. Cancer was very lonely for me. It consumed me. While my wonderful friends and loving family supported me wholeheartedly, they could get away from my cancer. I could not. And now that I have COVID-19, and the entire world’s attention is focused on it 24 hours a day, I almost have forgotten I have cancer! I’m distracted.
Broadly speaking, it’s been challenging to have to face my own mortality twice in less than one year. That said, I also feel very fortunate to have really effective tools in place to deal with this new diagnosis as a result of my ongoing work with Valentina Ogaryan, PhD at Simms/Mann. Our calls, her notes, the additional resources she has sent, all have helped me keep perspective and a clear head.

What are some words of encouragement you’d like to share with the cancer community?

We, as cancer patients, have been through a lot. I’d even say more than our fair share. So that last thing we need is a pandemic, right? It’s surreal. The good news, I guess, is that here’s someone who has been through both and am writing to tell about it. The news can be so scary. The photos are disturbing. The numbers are overwhelming. But I’m sitting in my backyard, enjoying the warm sunshine (and lack of horns and traffic!) while I type to you. This is going to pass. They will develop a vaccine. We’ll all be back on the 405 soon enough cursing the parking lot traffic. In the meantime, take a deep breath. Read a book. Enjoy a midday nap. Remodel your garage (that’s what we’re doing!). You also can take a listen to my current theme song: Tubthumping by Chumbawamba.

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