How I Protected My Sanity in The Mental Health Oasis of Oncology
When I was asked to write something about mental health in oncology, I thought, “nothing easier.”
In a way I was right, but for every right there is also a wrong. Everyone in cancer has an experience that is the polar opposite of someone else’s. There is no experience more subjective than one’s journey though oncology.
So instead of trying to meld forty-seven different blogs into one, I’ll start with my case, at the end.
Or… one of the ends.
See, I’m a bit different. At 46 years old I was the most joyful girl in hospice. Not that I wasn’t dying–I very clearly was. But I had two things working in my favor. I had a bone-deep belief that I could fight this cancer and go back to my real life. Also, I had escaped a month-long stay in an ICU, during which no one would even humor the possibility of my survival.
Positive thinking, envisioning the future, making goals… none of that was on my treatment plan. I had arrived in the ICU with a tumor covering 95% of my trachea. I weighed 60 pounds. I had a trach in my throat attached to a ventilator. I had recently danced with sepsis, and also developed pneumonia in my only working lung. Oh, and it was discovered that my small bowel had developed maybe eight small tumors. In case that left room for hope.
But the very worst part; the most painful part? The trach in my throat had rendered me mute. In my 25 days in the ICU, I was only able to speak for a few hours. I am a talker. It’s how I cope, plot, plan, express fears, and gather courage. And now I was trapped inside an invalid’s 60 pound bed-bound body.
I was furious.
I was consumed by thoughts of food, and why my doctor refused to let me have it. Every day, all day, the two phrases I heard most were:
“You MUST accept you are dying,” and
“I can’t understand you. I don’t read lips.”
But I still had my mind, and I kept myself as sane as I could. For a girl with a lifelong scathing anxiety disorder as well as PTSD, it wasn’t easy. But anxiety had taught me problem solving. It taught me when to seek comfort, when to fight and when to seek flight. It was my superpower during cancer, because I never leaned in. I tried to get away. I lamented the day my legs stopped working so I could not run away. I was not someone who wanted to embrace my diagnosis or do the “F cancer” thing. I considered myself a visitor. I didn’t feel like I was a victim; that’s a strange way to humanize such an impersonal disease.
In short, my view was, “It got me. Now let’s get rid of it.” I’m not a peppy perky person. My life happened in a way that made me a lover of laughter, cynicism, dark humor and avoidance of adulting at any cost.
So I came up with a plan to save my life. I didn’t think it was outrageous to try and cure the cancer over a dozen doctors had already pronounced lethal. But they would get pretty bothered about this idea that I thought I knew more than they did.
I did think I knew more, because I sure as hell cared more. I knew my name. I had a life before I became this skeletal mockery of who I was. I knew how hard I would fight to be able to walk into a bathroom and shut the door again. I’d say they underestimated me, but they’d never even considered me.
The mistake I made was telling people I had a plan. This got me a psych evaluation in the ICU. Because obviously… I was crazy.
So after hammering it into me that I had mere weeks to live, they sent in a psych resident to ask me things like,
“Are you experiencing depression?”
“Low mood?”
“Suicidal thoughts?”
“Feelings of hopelessness?”
In the SAME session that was supposed to convince me to accept my death.
Every once in a while I post the notes from that day on my social media. It brings me joy to see irony embraced in such a pompous way.
…Especially considering that I was still mute! To have only the options of nodding my head, shaking it, or giving a thumbs-up or down? The psych resident didn’t even notice that I was mute at first. Not until he got upset because I “wasn’t answering” his first question. He scolded and threatened me with restraints… and then, finally, he actually took a look at me.
What all this has in common is that it was not my fault. Not my fault equals not my problem. My job was to get well, and I did.
My plan ended up working. I told the ICU I wanted to be released to hospice. I spent six days in hospice care before leaving to revisit my original oncologist. I convinced her to start me on immunotherapy. Then I started eating as much as possible while learning to use my body again.
Nine weeks later I had gained back over thirty pounds. I could walk on my own. And I got my first clear scan.
One the day of my first immunotherapy infusion I officially had only days to live. By my 4th infusion I drove myself to the cancer center.
How could an easy, painless, rapid cancer treatment like this be overlooked?
Easy. It wasn’t an FDA standard treatment protocol. I had ablation in the ICU, followed by solo immunotherapy. Try asking for that particular treatment today. It’s not permitted.
I’m alive because I played the system. Immunotherapy was then considered a palliative drug – not curative. Stage 4 patients are not allowed curative treatment. But I believed that immunotherapy would cure me, and it did.
Or… did it?
On paper, I am still a terminal and incurable stage 4b lung cancer patient. That means I have 0% odds of having survived the past few years. Yet, I celebrated six years of clear scans last week. I have been off immunotherapy for over five years. I’ve run my own case since 2019. I no longer believe the doctors who read that first clean, miraculous scan and told me, “You’ll likely still die. It will be back. Don’t get too comfortable.”
None of my doctors have ever congratulated me. I’ve never rung a bell. I’ve never been allowed to put it behind me… because stage 4 cancer cannot be cured. It’s true. Someone wrote it down somewhere a long time ago, so that’s that.
My cancer was discovered February 15th, 2019. Treatment started June 7th. In the ICU on July 16th. Released to hospice August 9th. Immunotherapy began August 29th.
That first clear scan was December 9th.
For six months I fell straight down into cancer, and three months later it spit me back out.
Still, today, if I’m in a medical building, I’m a “terminal lung cancer patient.” So you best believe I avoid medical buildings, but I’ve found reasonable people to work with. Any doctor who hears my story and still says I have terminal cancer, I fire. That’s my prerogative. They’re placing more value on the system than on the patient.
Because, and I’m going to be real with you – it’s nonsense.
The basis for this flimsy assessment is that I might still have hidden, undetectable, dormant cancer cells.
…Just like every other human on earth.
So! Let’s try these scenarios…
Scenario One: I sit on my couch. I binge episodes of “Murder She Wrote,” never exercising, eating only ultra-processed food… maybe I take up drinking. Why bother? Why live? I’m dying, right? It’s just Year Six of waiting for the inevitable. My god, when will the sweet reaper come and release me from the misery of waiting to die? I have NOTHING to live for. The doctors have made that clear.
Or:
I run up to you, bouncing around because I’m a bit energetic in real life, and I yell “HEY! HEY! Feel sorry for me, I’m dying! It is my 2,322nd day with only 3 days to live!”
(That’s truth. There’s no backtracking, no “getting better” with stage 4. So many “last days!”)
Maybe you ask me, “Why are you dying?”
“I had the deadliest cancer in the world over six years ago. I’m fine now; perfectly healthy. But I’m still dying and I cannot be cured.”
You might ask, “What medicines are you on?”
“None! I haven’t taken any immunotherapy in over 5 years, and I was cancer-free a year before I stopped it.”
“Well, then why do you think you are dying?”
“Because every doctor says so! It must be! It cannot be changed. It’s fact. It’s science.”
My point in all this is that never once in my oncology story did a single doctor give a thought to my mental health. It never crossed their minds. It’s why I became a cancer advocate, because if you don’t think that first scenario is more common than the second? That people are given 3 YEARS to live… and then they just sit down to wait? It happens all the time.
In my experience, people will argue about anything save an educated guess on when they might die.
The thing is, an uneducated guess might be just as accurate. Because the odds are always 50-50. Doctors like to get fancy with median percentages from a decade ago. That was long before 80% of the drugs used in oncology today existed, but it’s about the same.
My story is awful. I get that, but I didn’t get sad or depressed about it, because I knew: that actually might kill me. I think it’s a story about listening to your instincts. By the end I would laugh whenever I received a new estimated time of death.
Part of the reason I published my book is because it includes large chunks of my medical file. It exposes the serious medical abuse I was subjected to. If I could have spoken at the time; if one doctor had ever listened to me talk… they would have known I was never going to let them kill me.
My husband’s mother was diagnosed with stage 4 lung cancer four months after I was. She died on the day of my third clean scan. Days before, she called me and told me: You go get ‘em, kid.
And so I do. I raise awareness. I do it in her honor, and also on behalf of all the patients who are callously thrown away.
So remember: Sometimes, you really DO know best. No matter what the doctor says, you know yourself better, and you care about you more.
I didn’t survive everything I went through just to swim in the trauma of my past.
I thrive as a badass who everyone underestimates… because people think anxiety is a weakness.
