As we are gradually re-opening our economy, I thought it might be good not to forget the Federal government’s mandate that we have to protect the most vulnerable in our population. To put a face on one of the most vulnerable populations, I interviewed 49 women who have Metastatic Breast Cancer (MBC). Some of these women’s cancer has spread to their bones, liver, lungs, or brain and in a few cases, all of these major organs. It used to be that the average life span of these women would be five years. Thanks to some new, but very expensive treatments, rarely, some patients can extend their life up to 15 years. Every day these women are able to function normally, are precious days. During this pandemic, this day to day living has been turned on its head.
Emily, who has suffered from MBC for eight years finds herself being scared that the quarantine is being lifted, and angry with people who seem so thoughtless of others.
“It is hard. Other people may feel comfortable getting their hair cut, but not me. Other people may be going to the big stores, but no stores for me. I feel trapped. I feel like I’m being robbed of enjoying what time I have by this virus, and thoughtless people. Finding the right balance of caution vs. living life, is something I’ve done fairly well until Covid-19. Now the equation has changed, and I have to re-negotiate that balance with myself”.
Going to the infusion appointments to receive their treatments can be a lonely undertaking. Many women derive their courage and commitment to their family members who accompany them to their appointments and sit to make the sometime 6 to 8-hour infusions go by faster. In this pandemic, most all hospitals are banning guests from accompanying their ill friends and family. This is important to slow the spread of Covid 19 and keep these women safe from others who may have the virus. Yet, that fact is little consolation to those whose disease is compounded by the isolation they find themselves in.
There are also no rules that guide how all hospitals must safeguard their oncology patients in treatment. Miyahita et al, Annals of Oncology, have reported on the outcomes of patients with cancer and COVID-19 during the outbreak in New York City. They reported that among 334 patients with cancer and COVID-19, who received care in one health systemthere was a non-statistically significant higher mortality rate for all patients with cancer. They reported that among 218 patients with cancer and COVID-19 at a different health system there was a 25% case fatality rate in patients with solid tumors and a 37% case fatality rate (68 total deaths) in patients with hematological malignancies.
According to the women that I interviewed, some oncology centers require you to check in, get your temperature taken, make sure you have a mask, sign a document, and get your hands sanitized. They only allow 3 people in the elevator at one time and some have Covid testing outside the building before you go in. The infusion seats are also taped off to enforce 6 feet distancing guidelines.
Other hospitals have the bare minimum, no enforcing of distance, and patients allowed to take their masks off as soon as they get to the infusion center. Is this an exceptable practice? Isn’t there any responsible body that can ensure the same guidelines in all hospitals?
Margie, an MBC patient states, “I struggle with people who refuse to do something as simple as wearing a mask. I tell them, ‘I will wear one to protect you and you can wear one to protect me.’ I went into a store today just to go in and be near people. It was an unnecessary risk. I went in, with my mask on, and I wanted my husband to put the produce in the basket, so I pointed to what I wanted, and my husband put it in the basket. There were only 3 people wearing masks; my husband, a lady, and me. It wasn’t crowded; maybe 20 people in the store. A woman deliberately walked into my space and grinned. I asked my husband for the car keys and went to the car. I sanitized my hands, took off my mask, and cried.”
Yet no matter what transpires inside the hospitals, some MBC patients feel like they have been in a pandemic ever since they received their diagnosis. Mary’s doctor did not want her leaving the house because of the low white blood counts resulting from her treatment that left her vulnerable for any opportune infection or virus.
Mary states, “Now I just laugh when I see young people crying over not going to the movies, malls, and bars. The pandemic will not last forever, but my metastatic breast cancer will. I would never leave my house again if I could reach my feet to put my socks on, clip my own toenails or be able to sleep on my stomach and walk without pain.”
The high financial cost of cancer care is well known but because of the pandemic it has hit MBC patients significantly harder.
Sonya says, “Our income got cut pretty drastically because of the Covid-19 fallout. Finding legit work from a home job that works with having all my kids home and my husband working from home, has been hard. I was a substitute teacher before but hadn’t worked for a couple of months before all this started because of a move so I can’t get unemployment. So, I started driving Door Dash. It makes me so nervous every time I have to go into a business to pick up an order. But we need to pay our mortgage and feed our kids. Seeing how many people are out living like life is normal, makes me so sad. Mostly, because this has all caused me so much anxiety. My husband has a higher risk than I do, so I worry about bringing the virus home. But what else do you do? We don’t qualify for any kind of assistance. It is nice getting out of the house after 2 months home all the time, but so stressful too.”
For most women I interviewed, it all comes down to whether they will be alive by the time a vaccine is found for Covid-19. Without, a vaccine they are in prison, no matter how much the country opens up. Many have a bucket list of things they want to do, and places they want to visit before their disease takes them.
As Gigi states, “My biggest fear is that I will die before there is a vaccine or clear way forward. I am a widow with a 16-year-old high school junior. My greatest wish before the pandemic was to live long enough to see her through high school and at least through her first year living away at college. Now, with this damn pandemic, even starting college in 2021- on campus- is dubious. And so is the likelihood that I will still be alive in 2 never mind 3 years. The uncertainty of MBC, magnified by the uncertainly of COVID, intensifies the heartbreak I already felt from MBC.”
I am hoping that by giving a voice to these women we might think twice before we enter a grocery store without donning our mask or think twice before we complain that we can’t go to the movies or watch a football game. Everyone wants to get back to normal but perhaps not quite as much as those women who have such precious little time.
Deb has worked in mental health as a social worker helping her clients transform their lives.
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