This past weekend, Craig and I quietly celebrated a year of remission from AML. With that comes a deluge of emotions, many of them conflicting. In hindsight, I was not too terrible at dealing with the active physical fight through AML. When the choices are live or die you do whatever it is you have to do to live, right?
The physical battle was intense but relatively quick compared to those that many others face. So perhaps I had an inkling that with such an unexpected diagnosis and fast paced, intensive treatment might come a longer mental battle. And it has been. For the first time in my life, I’ve given myself the time and space to pick apart and process all of the thoughts and emotions that have come up.
As my hair grows back, as my life goes on (thank goodness) people stop asking how I’m doing because there isn’t anything physical to see. There are no tubes hanging out of my arm. However, there are plenty of emotions hanging on my heart.
We have all kinds of questions about how someone is doing when they have a physical ailment. But when the physical ailment isn’t there anymore (or never was) we are scared to ask how they are doing. The conversation might be uncomfortable for both parties. Or we’ve been taught not to pry. Because generally speaking, we as a society don’t talk about how people are coping mentally. For the record, I’m OK. But I say this because I know from meeting friends along the way that many of them are not. Or many of us find ourselves amidst 50 shades of okay that change from day to day.
After allowing everyone else around me to diagnose me for the last year and a half, I’ve decided to diagnose myself- in a different way. Because I think if we can start to understand how others feel, we can figure out how to be there for them. In every post I have shared throughout this journey, I’ve received emails and DM’s saying thank you for finding the words that others either needed to hear or had within themselves but hadn’t been able to express yet. So I hope that my silly but real self-diagnosis helps someone else figure out what they are dealing with or helps a friend figure out how to support them.
Okay, here we go….
By the powers vested in me by absolutely no one of any medical institution and not even Wikipedia or Web MD (which seems to be enough for most people to consider themselves experts) I am diagnosing myself with:
- Celebratory Paralysis
- Gratitude Shock
- Post Traumatic Is-This-Normal Syndrome
- Mortality Binge Worrying
See, all of that time around medical professionals really paid off!
For those of you who are new to the involuntary roller coaster ride this last year and a half have been for our family, I invite you to a crash course via the links at the bottom of this post. If you’re like me and prefer a more visual deep dive, head over to my Instagram where you can not only experience ALL the emotions, but also watch me go from woman with a full head of newly balayaged hair to baldie to Cosmo Kramer to Carol Brady hair in an almost flip book like fashion.
Let me break these various diagnoses down for you in my own highly legit, very real, definitely not made up terms.
Post Traumatic Is-This-Normal-Syndrome
Post Traumatic Is-This-Normal-Syndrome is a syndrome in which the afflicted goes on to question a multitude of things in life after a major shock and wonder if they are in fact, “normal.”
Those suffering from PTITNS not only can’t pronounce this ridiculous acronym, but also find themselves trying to ensure that they have not completely screwed up their children, spouse and themselves in the process of stayin’ alive.
PTITNS sufferers are constantly trying to figure out if everyone is “OK” without digging too much and potentially creating new wounds. The only thing they fear more than unnecessary exploratory mental surgery is unintentionally sweeping everything under a chic tribal rug and assuming all is fine, which almost certainly guarantees their children a spot in the therapy for life club.
Yes. You guys, I have spent so much time analyzing everything over the last year. A few months back I asked my oncologist for a referral to a psychologist who specializes in oncology patients so I could ask someone with experience how the heck life is supposed to be right now. I must have asked her “is that normal?” a good 50 times in our few sessions together. Long story short, three sessions later her parting words to me were that maybe I need to stop shitting on myself so much. I laughed. Don’t we all?
Once we get past the super scary you might really die right now aspect of the cancer I was dealing with, I have to say that in so many ways I found my experience to be wonderful. A word I feel like almost never comes attached to cancer. When you take out the physical suffering that went with getting through treatment, the rest of the experience was in many ways ideal.
We had support. Incredible, unspeakable support. I had fantastic doctors. We handed over the max out of pocket on our health insurance and I felt like I was getting a freaking bargain for what I got in exchange. Our kids seemed relatively unscathed by the entire experience and thought the hospital was a cool place where treats were handed out like Halloween. Craig and I came back to our marriage like a couple who had aged 20 years emotionally. There was an understanding there that you probably can’t explain until you have truly tested the limits of in sickness and in health. I myself have managed to forget most of the awful parts of the experience. I guess much like having a baby, we’re built to forget.
And because of all this positive around something so negative, I guess I feel like there has to be more. That I must be doing something wrong. That surely I haven’t dealt with this properly or mothered through it properly (as though there is a proper way) and it will come back to bite my family.
Mortality Binge Worrying
Mortality Binge Worrying afflicts many who have narrowly cheated death (at least for now) and have been forced to take their own mortality, hold it in their hands like a snow globe and shake it to see just how the pieces might fall and actually consider it.
Much like snow globes, mortality can sit on a shelf for days, weeks or months untouched and unquestioned. But then every once in a while, someone picks it up and shakes it. And then they shake it some more. Because the snowflakes have already been disturbed, so why not?
I’ve never spent too much time worrying about dying. I think it’s a bit odd if you don’t have any rational reason to worry, right? But now, I think about it more than I want to admit. And I don’t want to think about it because the whole point of living through this was to live, not to worry about dying, right?
I might go a day or a week and then it pops into my head. The fear of relapse. I find myself scrolling AML groups, seeing what other patients are saying. Hoping to find exciting news of medical breakthroughs or new studies that suggest a brighter future. But I know what’s really waiting there. A lot of sadness and desperation. People looking for answers for problems that won’t be solved. I have hope. Real hope that things will change. I often use AIDS as my frame of reference. When I was Kayla’s age, AIDS was new, scary and 100% a death sentence. I can only hope that when Kayla is my age, AML is one of those things they can reliably fix.
I worry a lot about AML relapsing and this disease coming back. Beating it once is one thing. Beating it again will without question be much harder. Say what you want, perpetual optimists. I was born a realist and statistics support this statement. It doesn’t mean I wouldn’t do everything the exact same way and fight like heck. It just means I know the risks and the rewards. And call me a freak, but I’m actually not horrifically afraid of dying itself, which seems easiest on the person who dies. I’m terrified of what it would do to my family who will surely suffer more than I do.
Celebratory Paralysis is a condition in which one cannot celebrate or fully enjoy large or significant moments out of fear of jinxing the good thing that is happening. Those suffering from it cringe at the thought of a big party, or even at the mention of a friend saying something like glad to hear that you’re completely cancer free! (see also my post about remission and the definition of remission) Even the most rational Celebratory Paralysis sufferers tend to believe these thoughts or actions will almost certainly result in the rapid return of the disease and the universe yelling I TOLD YOU SO.
Remission related Celebratory Paralysis can most easily be compared to the first trimester of pregnancy. It is a happy time, but also filled with many unknowns, irrational superstitions and fears about making it through the foreseeable future with all parties in good health. (40ish weeks if you’re pregnant and 5ish years if you’re currently measuring your life against a Kaplan-Meier curve)
Those of you who have known me for a long time know I’m not big on big celebrations. I hid in the bathroom as a kid during the singing of happy birthday. I didn’t want a wedding and the attention and fuss that came with it, though I was super excited about getting married. So not wanting to celebrate big things or maybe being scared to do so isn’t new for me.
I never thought I was invincible but I also never thought I’d be measuring my life against a five year survival curve. I’ve mentioned before that AML comes with a shitastic 26% overall five year survival rate. If you take the time to look at the Kaplan-Meier curves for it, you’ll find that they look exactly like a stock you would NEVER invest in.
And perhaps that’s the crux of it right there. I’m scared to invest in myself for fear that all will be lost. Having spent way too many hours studying them, most people die between years 1 and 3 on those curves, starting from when they are diagnosed. So I guess right now at nearly 18 months out from diagnosis, I know we’ve hit a milestone but I still feel like a sitting duck. I’ve heard that this gets better over time and I believe it, because I have to.
Gratitude Shock is a common and fantastic side effect of undergoing a terrible moment in which humans made it so much better. Non-experts are still unsure if gratitude shock is enhanced by the seemingly rapid decline in behavior of humanity in general or if it’s simply the result of not growing up in the days of barn raising.
Gratitude Shock often occurs when an individual prepares (or has no time to prepare) to take on an overwhelming task on their own only to discover that the whole damn town has shown up to help in unimaginable ways. Those suffering from Gratitude Shock feel the warm, fuzzy, feeling of a debt which they cannot possibly repay.
Yeah, the world is amazing sometimes. I’m still overwhelmed by how the darkest of times for our family have shown just how brightly our friends and family shine. I’ve heard many people who are survivors say they would do it all over again because of what they gained. And since in many ways that sounds INSANE, I think Gratitude Shock plays a factor that those who haven’t been through it can’t understand.
I will randomly be going through a drawer or a handbag and find something. A card, a trinket, etc. from a friend and re-live those moments in the hospital when I received it and all of the good feelings that come with it. Rather than trying to corral them all in one place, I’ve subconsciously but probably intentionally allowed them to live at random so I get these reminders of a time when life was really hard but also, it wasn’t. Because of people. I think we all need that a bit.
One thing I haven’t dealt with yet is my inbox. I haven’t rewound back to those months of treatment to find the messages I know are waiting in there. The ones that I never expected. The one from the old boss who I’ve always loved even though we parted ways so long ago. The ones from ex-coworkers galore who I never expected to care that much. And the ones from old boyfriends I haven’t spoken to in years and years. I guess the paralysis extends, because I don’t even know how to answer them. I think I’ve tried in my head many times, but the words never feel right or enough.
The same with the card for my oncologist. It’s been sitting there for a year with a gift, just waiting to be filled out. As a woman of so many words, it seems I never have the right ones when I sit down to write it. I’ve tried at least a dozen times. At some point she’s getting a card that says thank you for keeping me alive. Because how do you even try to fit all the things you need to say in four inches of card stock?
It is a deep debt I’m living with. But also the best kind of debt one can have.