“I’m love forty down
As the match slips away from me, I need the crowd to pray for me
To turn this one around
I’ve worked far too hard to be this far from victory
I’m battered and I’m bruised
And I can’t afford to lose”
Frank Turner, “Love Forty Down”
From the moment you hear the word “cancer” much of your life experience becomes a series of percentages and numbers. The first percentage that I came across was 6%. I had a 6% chance of making it to at least the 5-year mark with stage IV, CRC. Another published site had those same odds at 15%. Pretty small numbers. And then you have to remember that that’s only the 5-year mark. There are no published statistics for 10-years, but I was told that my shot at making it long term is “very small” because of the incurable nature of my disease and my particular set of “data.”
Then come the waiting rooms, the blood work, the stepping on scales, the blood pressure and temperature checks and of course the incessant repeating of my birthdate over and over (042578, 042578, 042578…). Statistics, Numbers, Data. All unique to me, but at the same time cruelly objectifying. I am a patient with a bar code. Yet I am breathing. My heart is still beating. And my brain? It’s just trying to make sense of it all.
Doctors review your data before they step in the room. And the line that they walk when they speak to you is a very thin one. I don’t want you to lie to me. Please be honest. But it would help if you also not speak to me as if I were already a corpse as well. I am not a statistic. I am not a foregone conclusion. When you tell me that I should see someone to better come to terms with my own mortality, it tells me that you have already decided the ending of this story.
Consider how this feels on the other side of this equation. Doctors are my only hope to get me as long as I can, and I already feel like you’ve given up on me. I need hope. I crave hope. And you’ve given me no grip to latch onto.
I’ve written a lot about the emotional and mental havoc this puts on a person. Am I being too pushy? Too proactive? Asking too many questions? The doctors look annoyed. Am I just in denial?
The momentum of the process, the white coats, the waiting, the numbers- they beat against you like waves. They are intended to lull you into submission. To put you in “patient” mode. Listen to the good doctor. Smile. Do what you are told. And coast along this journey with him until you land at your final inevitable shore of death.
I’ve felt my heart pound out of my chest in waiting rooms. I’ve felt my legs turn into cement, the weight of moving too much to bear- in a doctor’s office after him leaving the room, and on a bench outside the facility. I’ve cried buckets of tears in the car in the parking lot of my driveway trying to get my shit together before going back into the house with my kids.
I even had a panic attack in the middle of a Target after running into a former co-worker and his family. I am probably dying of cancer is not exactly something you bring up in chit chat in front of two small children. I smiled, said I was doing fine. Talked about how much I was enjoying my new job. I held it together until their cart was out of sight, feeling like my chest was caving in on me and the floor sinking beneath me. I strolled the aisles aimlessly, having completely forgotten what I was even looking for or how to find it. I wanted so badly for the mundane story I had just presented to actually be my reality. But it wasn’t.
My stages of grief have been fluid and cyclical. Shock, denial, anger, fear, depression. I’ve cycled through them all. But there is one other that appears to be an essential part of my make-up. Stubbornness. I just don’t have it in me to passively give in. Is this merely my manifestation of the stages described as denial and/or bargaining? Perhaps. But in my view it is a feature that is desperately important for a patient with any serious illness to have.
As I traveled this week to get surgical opinions, I brought a book along with me titled (and yes, I am a nerd), “Me, Myself and Us- The Science of Personality and the Art of Well-Being” by Brian Little. There is a chapter solely dedicated to personality and health. The most important factor when it comes to the relationship between the two, it seems is something called a sense of coherence (SOC). Essentially, this is defined as “the extent to which one has a pervasive, enduring feeling of confidence that one’s environment is predictable and that things will work out as well as can reasonably be expected.” The key is the part at the end about “as can reasonably be expected.”
It all comes back to the serenity prayer, the wisdom of which, endures despite my lack of inclination towards religious endeavours. Grant me the serenity to accept the things I cannot change, change the things I can, and the wisdom to know the difference. As the book describes, “people high on SOC…” are better able to “remain mentally and physically healthy after being exposed to challenges.” We need the three elements of SOC- comprehensibility, manageability, and meaningfulness.
We need something to fight for. We need meaning. We need hope.
I don’t get to tell my cancer whether it will respond to treatment, how aggressive it will be, or where it decides to recur/pop up next. But I DO have a say in how I treat it. That means educating myself, asking questions, being annoying, getting second opinions and advocating for myself to the hilt to ensure my best chances every step of the way.
Over the last 4.5 months, I’ve joined Facebook groups dedicated to different treatment options, researched genomic mutations, and traveled for second and third opinions. I fired my local oncologist. I got a better one. I’ve been very lucky. My disease so far has been very responsive to treatment. That part was out of my control. Now I get to have a say in the next step of my treatment. Which surgeon do I choose? Do I get a chemo infusion pump installed? If they open me up and see any peritoneal disease with their eyes, do I agree to HIPEC (a very intense surgical intervention that literally involves washing out my insides with heated chemo)? How should I weigh my very strong risk of recurrence, given my genomic profile, against the risks of toxicity and other factors from this treatment? I feel confident and educated enough to make these decisions.
This week, I received a whole new set of numbers. I am now one of the lucky one in three that qualifies for a liver resection. That changes my 5- year prognosis from this week’s statistic of 10% to somewhere between 25-60%. How do you like those numbers? I love that they are going up. But that wide range of “data” that I am now entering into says a great deal about how reliable we should consider ANY of those numbers to be. I am not a statistic. I am not a foregone conclusion. My future is unique to me, and all of those factors that play into it. Both outside of my control and within it. And for today, and as long as I can manage, my breath still flows and my heart still beats.