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Inside the Mind of Someone With Terminal Cancer During the COVID-19 Outbreak

As I stared at my shoes
In the ICU
That reeked of piss and 409

And I rationed my breaths
As I said to myself
That I’d already taken too much today
As each descending peak
On the LCD
Took you a little farther away from me.

Away from me…

— Death Cab for Cutie, “What Sarah Said”

People with stage 4 cancer have nerves of steel. We’ve dealt with dire predictions. We’ve grown comfortable with uncertainty and fear. We’ve stared into the faces of our own mortality. In my experience, it takes a lot to shake us.

As someone with stage 4 cancer myself, I can tell you that my brain has gone to many places and has been through many phases over the course of the past several weeks:

Three to four weeks ago, I remember thinking that I’ve withstood so many rounds of having my hopes crushed and worst case scenarios that if I actually caught coronavirus, I would pretty much at that point just be dumbfounded, have one last drink and say goodbye. I even entertained the thought that death from the virus might actually be less painful and drawn out than cancer

Two to three weeks ago, I remember feeling that it seemed as if the rest of the world had — finally — caught up with how I’ve felt every day for the past 18 months. They are finally experiencing what it is like to have your whole world turned upside down. They are feeling the tiniest shadow of what it’s like to worry about getting sick or dying, and to not know what is coming next. I felt for the world, but at the same time felt oddly comforted to not feel completely alone in feeling that way.

Two weeks ago, the reports started flooding in from Italy. There were stories of not being able to save everyone, leaving the elderly and persons with co-morbidities to die without treatment since there weren’t enough ventilators to go around. They were taking ventilators away from people who were deemed to not have enough life years left to be “worth saving” in favor of those who did. I took deep, hard, mental stock for the first time that people like me were now considered to be acceptable sacrifices for the otherwise healthy and newly scared people who might catch the virus.

One to two weeks ago, I learned that Washington State had briefed its medical
personnel on a triage plan very similar to that of Italy’s — persons 80 and over or persons under 80 with a co-morbidity scale of five or more were to be refused treatment as soon as need approached the level of ventilators available. The message came to me via a post from Washington State physician Dr. Morhaf Al Achkar, who has stage 4 lung cancer himself, stating that his own cancer put him on the scale at six.

One week ago, I read this article. This was the first time I’d read about the experience of someone dying from this virus. It was not, as I’d imagined several weeks earlier, a quick and relatively painless death. It was torture. You basically slowly drown to death on your own lung fluid. Think this isn’t torture? Try waterboarding.

And in the past week?

I’ve witnessed politicians and internet trolls coming out of the woodwork to say that sacrificing some lives for the sake of the greater economy was the best plan.

I’ve read about lupus patients being denied medication because our president
said it could be used against COVID-19, despite very dubious evidence to support that position.

I’ve read about nurses in hospitals who are not only concerned about their supplies of ventilators and masks, but painkillers, too.

As you can imagine, all of these events have had a profound impact on the
cancer community as a whole, but especially among those of us with stage 4 (terminal) cancer. Concurrent with all of the events above, I also read about several things that were happening specifically to those of us within the cancer community:

1. I’ve heard about clinical trials being cancelled or in danger of being canceled. Trials that stage 4 patients have been counting on for a chance to extend their lives. Trials that they went off chemo several weeks prior to in order to even qualify.

2. I’ve heard about surgeries being cancelled. Surgeries to remove tumors and disease have been put on the shelf until some point in the unknown future.

3. I’ve heard in some cases, chemotherapy itself is being cancelled, as hospitals and doctors have to make the tough choices as to whether bringing someone in for treatment is more or less dangerous than the risk of them getting further immune-compromised, or possibly even being exposed to the virus while going in for treatment. Terminal cancer is scary enough. Terminal cancer without treatment is the wild, wild, west.

All of this has put myself, and many others like me, in a very particular psychological and emotional state. I worry about my own clinical trial that I am depending on to extend my life. I worry about people who feel invincible ignoring social distancing rules and exposing my family to the virus. I worry about the country “opening up” again and all hospitals being so overloaded that I will need to hide in my bunker to protect myself for the rest of the time that I have left on this earth. I worry about what will happen if my husband, who is my primary caretaker, gets this virus. I wonder what will happen if I get this virus…

I have nightmares of being locked up with the other people not deemed worth saving in the hospital, left to die without anyone I love around me. I get visions of being tossed into the wheelbarrow of dead people being ushered down the street like in the “Monty Python” movie.

Seems ridiculous, right? But it’s not really all that far from the truth. Some people who die of this virus, even on a ventilator, die, gasping for breath, all alone and away from their family. In some cases, people dying right now from any cause are quickly buried with maybe only one family member present. Everyone dying right now is being denied even the humblest of memorial services or even celebrations of life.

Even if I die from cancer, I wonder — will anyone be able to come and say goodbye before I die? Will I ever get a memorial service? I can assure you that all of these things have led to some very serious and very disturbing conversations between my spouse and I behind closed doors.

What if… there aren’t enough medical staff to come out to my home and give me hospice care when I get sick? What if… they begin rationing and diverting even pain medications away from people with cancer and to only those COVID-19 patients deemed worthy of saving? What if no matter whether how I die it is in utter, complete agony and without medical assistance? 

Should I even bother to inquire about treatment if I catch the virus and risk getting quarantined away without treatment and left to die? Do I even want a ventilator if I were offered one? I have a living will and have made it clear that I don’t want to die on one. Especially not all alone. I would only want one if it meant a chance at recovery and several more months at life. Is it even realistic to think that would be the case? I am not the only one feeling the weight of all of this right now.

These are thoughts I should never, ever have to think, conversations I should never, ever have to have, and decisions I should never, ever have to make.

Please think of me and others like me as you decide that it is OK to go back to life as usual. Please think of me and others like me as you decide that there are acceptable sacrifices to be made among the elderly and immune-compromised for the sake of the economy.

Signed,

A human being

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Getty image via bruniewska