“The best thing we can do is go on with our normal routine.”
~Nurse Ratched, One Flew Over the Cuckoo’s Nest
Recently, I celebrated one of my cancerversaries….a pretty big one too; five years, disease free.
Back when I was going through the cancer, my family and friends would check-in on me all the time. “How are you doing? How are you feeling? Is there I anything I can do for you, anything you need?” they would ask.
So many people were worried about me and for me. I was added to prayer lists across multiple denominations all over the country. People mediated for me and gave me small tokens of faith meant to bring healing. They sent me inspirational quotes and cards and handwritten letters and books about faith and grace.
I both loved and hated the attention.
I loved it, because it made me feel important and wanted and loved. It made me feel tethered to life at at time when I was terrified I wouldn’t survive.
I hated it, because I prefer to spend most of my time trying to just blend in. I’m not comfortable being the center of attention, ever. I’m not comfortable with attention period. I prefer to go unnoticed. At all times. Like an awkward ninja.
But being pregnant with cancer was the sick persons equivalent of being famous. There was no blending. Everyone noticed me.
At the hospital, walking into the infusion center with my big, pregnant belly, the nurses, other patients, volunteers, even the janitorial staff would remark with compassion about my plight.
When my hair started to fall out and I had to shave my head, seemingly every person on the planet began to notice me. It was like I was walking around with a neon, blinking sign that said, “I am pregnant. AND I have cancer. Feel bad for me.”
And please don’t take this the wrong way. I really did appreciate the support, even from total strangers, but it was overwhelming at a time when I could barely manage the broad spectrum of my emotions on a day to day basis.
Some days, I was the person who would respond with uncontrollable tears and fear.
Other days, I was the person who would say things like, “Oh, it’s no big deal, really. I’m going to be fine and so will my baby. At worst, he’ll glow in the dark for six months or so, but they’ve assured me it won’t last.” (Lies)
But now, it’s been nearly eight years since my diagnosis and I’m five years disease free, which means for all intents and purposes, I am cured. Every night and every day, I say a silent prayer of thanks for this life I’m so blessed to be living.
Now, it’s only on the cancerversaries that people ask how I’m doing and how I’m feeling and I always say, “Great! I’m doing great. I feel great!” and that’s the truth, but it’s not the whole truth.
When you look at me, you can’t see the cancer anymore. The chemo glow is gone from my face (think less glow, more wild animal trapped in a cage). My hair has grown back and I don’t have any physical scars, save for the four small radiation markers that were tattooed on my chest. I don’t have any physical limitations, at least none I’m aware of.
If we were to meet as strangers, you would never know I was a survivor….unless you got close enough to smell my favorite perfume and then you might ask why I smell like the exam room at your doctor’s office. (I’ll explain in a second).
The whole truth is this, I am cured, but I’m also not. I don’t physically have cancer any more, but it’s side effects still linger.
I’m not the exact same person I was before the disease. In some ways, I’m a better version of the person I was before and in other ways, maybe not so much.
I have a better understanding of who I am and what I’m capable of. Cancer reset me in a way I think I needed, though I won’t go so far as to say I am grateful for it.
On the flip side, I am also far less tolerant and patient with people I think are ignorant. I’m talking to you Trump supporters and the state of Alabama.
So what I really want to say when someone asks me how I’m doing is this:
“I’m great, I feel great and also….”
1. I love the smell of Cal-Stat
If you are one of those people who loves diffusing a specific essential oil, or burning aromatherapy candles because it helps to alleviate your stress, or anxiety, or just generally makes you feel good….well, that’s what Cal-Stat does for me.
BTW, in case you don’t know, Cal-Stat is a hospital grade hand-sanitizer.
And since you can buy it on Amazon, I am free to wear it like it’s perfume. And I do.
The smell reminds me of my doctors and being at the hospital for my treatments, which some might think would have the opposite effect, but not for me.
I LOVE going to the hospital.
I feel safe there, surrounded by machines that beep and all the sterilized equipment. I like when they take my blood and check my vitals.
If I could persuade my doctor to scan me every week, I would. But apparently, that’s a ton more radiation than would be good for my already radiated body, so he very patiently tells me no every time I ask for a quick zap through the machine.
He likes to tell me it’s a good thing I no longer need to see him more than once a year and of course, that’s true, but my doctor and the hospital are my comfort items.
And since they won’t let me move in, and I can’t just fit my doctor into my pocket….and he refuses to come and live at my house, Cal Stat is the next best thing.
2. Speaking of Anxiety…
Me: I feel really great!
Anxiety: (while I’m minding my own business watching a Southern Charm marathon) No you don’t. Remember that headache you had a month ago? That was a brain tumor and now it’s too late. You are riddled with tumors. RIDDLED. Really. You should Google it.
So, that’s been fun.
3. Bucket lists are kind of my jam
Actually, lists in general are my jam. I love the small pleasure of making a list and crossing things off. But my version of a “bucket list” doesn’t only include big adventures, or once in a lifetime vacations.
It’s an ever changing, running To-Do list of all the things I’ve said I want to do over the years, but haven’t followed through on.
Every new year, in lieu of a resolution, I review my list. I mark off the things I’ve done, I add new things and I carry over the stuff I didn’t accomplish.
It includes books I want to read, recipes I’d like to test out, DIY projects I want to complete and activities I want to do with my family.
I feel the pressures of time and the shortness of life in a way I never did before. My list is a way of keeping me accountable to the actual living of life.
For me, that means all the small things; baking Christmas cookies with my son, teaching him to ski, taking him camping, teaching him how to fish, carving out time just for my marriage and carving out time just for me.
4. But I also have a Fuck-It-Bucket:
I will never be the exact right amount of enough for everyone. And quite frankly, I don’t care to try.
I’m no longer available for things, or people that make me feel like shit.
Also, I’m going to eat the cake and all the taco’s and none of the kale.
5. Everything hurts and I’m dying…
I had no reason to believe I had cancer, before I was told I had cancer. I was in my early 30’s and seemingly, perfectly healthy. I was 22 weeks pregnant and my child was developing without a single complication or concern. Life was good. REALLY good.
When I was diagnosed, my doctors theorized that the cancer had been developing for 6-9 months before it ever said a word. It was terrifying to me that I’d been living with cancer for that long and had no idea.
In the years that have since passed, I have become obsessed with trying to remember how I was feeling during those months I was sick, but didn’t know it.
Were there any clues I missed? Symptoms I didn’t recognize? Something, anything I can watch out for now, so that if it comes back, I’ll know before it gets another head start?
The answer is mostly no, which is scary AF. So as a result, I pretty much think everything is cancer.
Muscle aches = bone cancer
Those occasional post child-birth hemorrhoids = colon cancer
New freckle (age spot, fine) = skin cancer
Headache = brain cancer
Cough = lung cancer
Stomach ache = cancer in all the organs
Normal? What’s that?
In the last few weeks, I’ve been experiencing some gradual, physical changes that have sent me reeling. My Google search history currently reads like I might be preparing for a gynecological board exam.
And of course, the more I read, the more aware I become of my body.
I have to pee. When was the last time I went? Am I urinating more frequently than I was before?
I think I look a little bloated. Am I? Wait, do I feel pain in my abdomen, my pelvis? Where is my pelvis?
I feel tired. Am I more tired than usual? What exactly is fatigue and when is it just fatigue and when is it, you know, FATIGUE?
My back hurts. But I think it just feels stiff, or is that what “pressure” feels like? Oh God, how can I tell the difference? Why doesn’t Google have a definitive answer?
I just ate. Did I eat as much as I normally eat? Do I feel sick now?
I’m crying. I’m crying a lot. I’m terrified and anxious and if I stop moving, I’m going to have to sit with this. And if I have to sit with it, the “what if’s” are going to start running through my brain like a freight train.
What if I have cancer again?
What if this time I can’t survive it?
What if I don’t get to watch my son grow-up?
What if he forgets about me?
What if….what if….what if….
And then today a casual friend says, “Hey, how are you?”
“Great! I say. “Just great….”