Ottawa·Point of View

I'm terminally ill with cancer. COVID-19 is robbing me of the time I have left

Last July, doctors told Alicia Barr she had a year to live. She became more optimistic this March as her health started to improve. Then the pandemic hit.

Alicia Barr, 32, pleads for caution as restrictions begin to loosen

Alicia Barr writes about weighing the decision to isolate for her own protection against the knowledge that she may be running out of time to see loved ones again. (Jax Hodge )

I am usually a private person. I decided to share my story to urge you to be cautious, even as COVID-19 restrictions loosen. 

I have a terminal diagnosis of stage 4b cervical cancer.

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This puts me at high risk for COVID-19 and complications, and higher numbers of COVID-19 cases in hospitals could also threaten the treatment I need.

Less than a year ago, I was a new mom learning to balance my family and career. I thought I was a healthy 32-year-old. Then all of a sudden, I was in an emergency department as a teary-eyed physician told me that I had metastatic cancer. Incurable. My five-month-old daughter was fast asleep at home with my husband.

A month after Barr and her young family travelled to Italy's Amalfi Coast last June, she received her cancer diagnosis and a prediction she had just a year to live. (Submitted by Alicia Barr)

Oncologists are reluctant to provide prognoses. I was persistent. I asked, "Will I be lucky to be alive in a year?" My oncologist slowly nodded. That was last July. Time became measured in months.

I began to receive drugs intravenously in hospital every three weeks. These drugs are necessary to control cancer growth, and to prolong my life.

With each treatment, side effects of fatigue, pain and nausea were increasingly persistent. Then, incredibly, the cancer shrank.

If my cancer worsens, do I risk seeing family and friends? I dream of years of life, but I also have to grapple with the possibility that I only have months left.- Alicia Barr

My treatment was modified, and in early March I started to feel better. Better enough to make plans to go out for dinner. To visit family and friends. To travel. To enjoy and make the most of this time.

And then the pandemic hit.

My family had to rapidly adjust. My illness and treatment put me at high risk for the virus.

Barr wears a mask to protect herself when she visits the hospital for her regular cancer treatments during the pandemic. (Submitted by Alicia Barr)

For us, that means a decision to voluntarily isolate until there is a treatment or vaccine, or until we are absolutely certain exposure risk is low.

We have not been in any stores. All items are washed or sanitized before being brought into our home. We are vigilant with handwashing and maintaining physical distance.

I now go alone to my hospital appointments and wear a mask. These hospital policies make me feel safer, but I am still nervous about COVID-19 exposure.

We relied on daycare to compensate for my continued fatigue, and to support my husband's career.

Last July, doctors told Barr she had a year to live. She was feeling better in March and had hopes of enjoying this time. Then, the pandemic hit. (Submitted by Alicia Barr)

We now need long-term solutions to keep my daughter at home full time. We lean on my mother and parents-in-law for help, but aren't sure how long this will be fair or safe.

She is a busy toddler, so we go for walks. We aren't always given space, possibly because I don't look vulnerable. Not all vulnerable people are elderly or visibly unwell.

This is the heartbreaking truth: the longer we stay in isolation, the greater the possibility that I may never see my loved ones again. 

If my cancer worsens, do I risk seeing family and friends? I dream of years of life, but I also have to grapple with the possibility that I only have months left.

Barr had these family photos taken with her husband and then 5-month-old daughter just after her cancer diagnosis in July 2019. (Jax Hodge)

After my diagnosis, I moved from Calgary to Ottawa to be close to loved ones, and now again I am at a distance because of the pandemic.

I know that life right now is hard for all of us. We are all making sacrifices and facing new challenges. I sense an urgency for a return to normalcy. But if we are not cautious, COVID-19 cases could rapidly increase.

Talk of herd immunity and phrases like "life must go on" frustrate me. These approaches will cause avoidable deaths, deaths that could include my own.

Alicia Barr is a mom and cancer patient in Ottawa.

An Ottawa mother diagnosed with cancer weighs the risk of isolating to protect herself and her family or seeing her loved ones, potentially for the last time. 9:16

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