Cancerversary | Small Story Big Picture

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5 years…

It was 5 years ago today that I heard the words, “You have cancer.” Amidst the instant whirlwind of scheduling scans and oncologist appointments, Googling “what is ocular melanoma” (bad idea) and “ocular melanoma mortality rates” (REALLY bad idea), I had to break the news to loved ones and try to shepherd my kids through the unthinkable. Somewhere in there (mostly in the middle of the night, when I couldn’t hide from it) I also wrestled with my own disbelief and fear – Really? Me? Now?? Whyyyyyy??

As I struggled to find my bearings in this new and disorienting landscape, preparing to get my fight on, I prayed. Hard. Words and coherent thoughts refused to come, but my heart prayed and cried out anyway (I’m pretty sure that’s a language God speaks, so it’s ok). And as I learned more about my cancer and my odds of beating it (50-50), I wrestled with the very real possibility that I could die from this nonsense. Now, being a good Lutheran of German descent, I was instinctively careful to stay humble with my prayers. Nothing too extravagant, just the bare minimum. I know it sounds ludicrous, but I also know there are a few folks tracking with me here. Don’t be greedy with the prayers, don’t ask for too much (it’s ok, the rest of you can laugh, but for some of us this is a thing). So what was my minimum? What was the very least I could ask for? After serious consideration and calculation, I determined that what I desperately wanted was 5 years. It’s true that with some other cancers, 5 years is a magical number because people can declare themselves cured after that amount of time. Not so with my cancer, because it’s “special” (of course it is). I’m not sure if there’s an official time when we get to declare victory, but I know I get to stop seeing my oncologist at 15 years. So that’s not the reason I picked 5 years.

5 years reflects my overarching concern (ok panic) when I was first diagnosed: my kids. I think this is common in parents with cancer, but my first thoughts were of my kids. They were teenagers. Beyond all the laundry, packed lunches and rides to activities, there was still so much that I needed to teach them, and so many significant events I wanted to be there for. Prom, high school graduation, starting college…

So 5 years meant that I would have seen them both graduate high school and head to college. Riley would be in his senior year and Tessa in her freshman year. By then I’d have had the time to impart all my motherly wisdom, and they’d be old enough to handle things on their own if they had to. And I felt like 5 years was a reasonable ask, because even if the cancer spread before then, I’d probably have a few years after that. So it wasn’t like I was being so brazen as to ask for it to not kill me, I was just requesting some time.

Ok is this even normal?? Probably not. And does God work like that? Nope. But our minds do weird things in crisis situations. I’m not proud to admit it, but I actually spent a significant amount of time calculating all this, as if it were a totally rational thing to do. Mostly at about 2:00 am.

My point with all this is that while all of my cancerversaries are significant, today’s milestone is particularly meaningful for me.

Sheesh, she could have just said that. Look at her, she hits 5 years and suddenly gets all wordy and stuff! Like she has all the time in the world. How long is her post going to be when she hits 10 years??

(No idea who let Jim Gaffigan in here, sorry. Continuing on…)

I spent a good portion of my day today trying to put together a collage of all the important things that I’ve been able to witness and be a part of these last 5 years. Turns out it’s simply too much to put in a single collage, which just wrecked me. In a good way. I listened to “The Riddle” by Five for Fighting (Five! Holy crap, I just noticed that. No seriously, don’t laugh). I talked about that song in a post a few years ago (March, 2016), when I was struggling with finding order and reason in this whole cancer business (spoiler alert: there is none). I had a friend who passed away from cancer, and she loved that song, and I never could understand why until I found myself wrestling with that riddle myself. I find the song very moving and powerful now.

I also listened to “Before the Morning” by Josh Wilson. Here’s the cool story about that one: early on after my diagnosis, while I was still waiting to find out the extent of things and if it had spread, I went to my health club with the goal of sweating some of that fear out. As I unpacked my bag in the locker room and put on my shoes, I noticed the lyrics of the song that was playing:

Would you dare, would you dare to believe

That you still have a reason to sing

Cause the pain that you’ve been feeling

It can’t compare to the joy that’s coming

So hold on you gotta wait for the light

Press on and just fight the good fight

Cause the pain that you’ve been feeling

It’s just the dark before the morning

It was stunning. As if that song played just for me, in that moment, because I needed to hear those words that day. I’ve had a lot of moments like that these past 5 years, when I feel as if God is drawing me close and saying, “Hang on kid, we’ve got this.”

So it’s been a reflective day, to say the least. Looking at pictures, listening to songs, crying a few times. Lunch and shopping with a girlfriend too, so it’s not like I’ve been in my pj’s all day (but a fair amount of it, and I’m telling you now I’m not sorry). I’m so overwhelmingly grateful for these last 5 years, and for the fact that assuming nothing weird happens, I’m going to be around for a good while longer. Maybe a really long time – not that I’m getting cocky or anything (again with the German Lutheran thing). When a hockey game goes into overtime, my husband calls it “bonus hockey.” So now that I hit my 5 years, I’d say this is bonus life. Bring. It. On.

Press on and just fight the good fight

Here’s the thing about fighting the good fight: it’s tough to do alone. Luckily I don’t even know what that’s like, because I’ve had an army with me the whole way, which I think is the thing I’m most grateful for.

Soon after my diagnosis, my girlfriend Jami decided that all the girlfriends needed to come over to my house to pray for me. I wasn’t sure if I was emotionally ready for that, but she insisted and they all showed up. They prayed the most achingly beautiful, loving prayers over me, and by the time we were done everyone was sobbing. After surveying all of our mascara-streaked faces, Jami deadpanned, “Oh, so this is how Avril Lavigne does that smoky eye thing,” at which point we all burst into shrieks of laughter, because we actually looked more like Alice Cooper but that was just funny. At that moment, I heard the garage door opening, signaling that my husband had returned from picking up our daughter from dance. “Guys!” I gasped, “Tessa can’t see us all crying like this, she’ll freak out!” And suddenly, my friends were all world class athletes, vaulting over the sofa, hurdling the coffee table, dashing to the box of tissues and throwing them to each other with laser precision. Which, of course, sent us back into fits of laughter. And that was what my daughter saw when she walked into the house – a bunch of women who love her mom, laughing hysterically together.

That, I think, is what fighting the good fight looks like. It looks a lot like showing up for one another when life gets crazy. When the riddle is unsolvable, when you’re spending sleepless nights calculating irrational prayer requests…when you have no foothold, hold out your hand.

Grateful for so much tonight, and totally crying again, so I’ll leave it at that. I love you, my beautiful army. Thanks for having my back and fighting the good fight with me. You know I’ll do the same for you.

Riley walked into the kitchen just now as I was cutting butter into flour with a pastry blender.

“What are you doing?”

“Making pie. It’s my one year cancerversary today.”

“Really? That’s a thing?”

“Yes. Yes it is.”

It is very much a thing. I’ve been feeling the weight of it for a week or so now, as events remind me of things from a year ago. Thanksgiving – when I was blissfully unaware of what the next week would bring. The day after Thanksgiving – when I noticed an odd shimmering in the periphery of my vision on one side. The next day – when I discovered I had a small blind spot on that side too. Two days later – when I called the opthamologist and insisted I be seen because I had been on Google and was pretty sure I had a torn retina. The next day – when, all alone at the opthamologist, I was told that I probably had cancer. And then the next day, December 4th – when the retina specialist confirmed the diagnosis and it was official: I had cancer. Each day this week I’ve relived the events from a year ago, sometimes wistfully, sometimes with a chuckle at the total absurdity of it all, and sometimes with a profound and melancholy sadness. Today I had a doctor appointment right down the road from the opthamologist’s office. As I drove by the building I could see the place in the parking lot where, after just barely managing to hold my emotions in check in the office, I ran to my car and exploded in violent sobs. I remember it vividly – sitting there, with my head reeling and my heart breaking.

It’s been quite a year. Even without the other two rings of my three-ring health circus, it’s been a learning experience, to say the least. I read a quote recently from a woman who told her doctor, “I’m sorry, I just don’t know how to have cancer.” Obviously, it’s a different experience for everyone, but we all do have to figure out how we’re going to do this whole cancer thing.

So that’s really been the challenge this year: how do I have cancer? And how do I make it a part of my story without letting it become my story? I’m still working through it, to be honest. I’m still looking for that magic formula, but I think it lies somewhere in the tension between forgetting and remembering…

Forgetting. It’s nice when I can forget I have cancer. It means being free from the Kung Fu grip of fear. It means I can focus on other things and just go about my life like a regular person. And it means I get to stop being such a freakin’ hypochondriac – yes, sometimes things just hurt, and it doesn’t mean anything. Pain in your side can actually just be the ghost of burritos past and not metastatic liver cancer. Living in that hyper-vigilant, what’s-going-to-happen-next kind of fear is no way to live. Yes, a little forgetting is nice.

Remembering. I don’t want to totally forget, because to be reminded that you have cancer is to be reminded to live. To really live. Like you mean it, like it counts. Remembering I have cancer can lead to a sucker punch by fear, but it can also be a kick in the pants to do the things that really matter (and what’s with all the violent imagery? No idea. Guess I’m feeling feisty today too). Facing the fragility of your existence brings everything into laser-sharp focus. Suddenly the jerk who cut you off in traffic lacks the power to totally wreck your day. Because you don’t want to waste precious moments on dumb stuff like that, do you? No. None of us do. But we get so caught up in the minutia, the things that ultimately don’t matter. Remembering I have cancer redirects me – to live my life to the fullest, to be patient and gracious and kind to others, to be fully present in every moment, to do the things I want to do now instead of waiting. I told Rich a while back that I want us to go away for spring break this year. Someplace warm with a beach. You hear about people going on a tropical vacation when they find out they’re dying, and I thought – why wait till a bad scan to do it? Let’s go. Bring on the umbrella drinks.

So that’s where I’m trying to live these days: the intersection between forgetting and remembering. When I hit that sweet spot, it’s a good day. When I miss, it’s a less good day. Because really, every day we get to live is a good day. Some days are just better than others.

I have so much more I want to write about, but if I take any longer, my family will never eat dinner. And, I promised myself a martini when I was done, and I reeeeally want that martini. So I will just have to share my other thoughts and observations about this past year in a future post.

And that’s the other huge takeaway from this year: I have some incredibly wonderful people in my life. Thank you all for the support, prayers and encouragement. Your love has been such a powerful force in my life and my family’s lives this year, and we are so very grateful. I want to hug you all. And I just might, so consider yourselves warned.

But first that martini. Happy one year cancerversary.

Cheers.