In February of 2006 I was diagnosed with Ductal Carcinoma In Situ in my left breast. I was 36 years old and didn’t see it coming. Not for a second. But it was Stage 0 and totally treatable with surgery, so there was that. I wouldn’t lose my hair, wouldn’t have chemo, wouldn’t suffer much past the initial recovery.
Except I did.
Turns out, life isn’t quite as predictable as a mammogram and an ultrasound might have you believe.
As my surgeon said hours after my double mastectomy (the right side was a choice made out of vanity — if I was getting fake tits, I wanted a matching pair), I had a very good cancer that was about to get really nasty. So I had the chemo, lost my hair, and I suffered. And I still do to this day.
Please don’t misunderstand me: I am a strong person. I got through 16 rounds of chemo, a year of Tamoxifin and 5 years on Arimidex like a champ. I used my cancer for good: I started a foundation called The REST Initiative that brought massage therapy into chemotherapy treatment rooms ay the NYU Cancer Center. I couldn’t have another child (damn estrogen), so I adopted my son. I soldiered on. I was a fighter and a survivor and I got through it and have, thankfully, been on the other side of it for a long time.
Or have I?
Survivorship is a funny thing. It’s incredible. We beat the odds, whether your cancer is in your breast, you lungs, your liver, your bones — it doesn’t matter. You survived. And that’s amazing. It’s a new lease on life, a gift, a chance to gain perspective. But here’s the thing: it can also be a curse.
My last official appointment with my oncologist came after I swallowed my last cancer-related pill. Simply a routine, follow up appointment to do a last check that I probably should have celebrated, but instead I was terrified. I felt like I was being pushed out of a plane without a parachute. The idea of going out into a world filled with “healthy” people paralyzed me. How would I know the cancer was really gone? How would I know it wouldn’t come back? Who would be keeping watch? And the kicker: would my body betray me again?
And that’s when he got real with me. Yes, he reassured me and told that I was no longer in any more danger of getting cancer than anyone else in Gen Pop, that I had eradicated my personal disease, that I was “done.” But he also left me with this piece of information that was so spot on that I almost fell over:
Being a cancer survivor is harder than being a cancer patient.
Sit with that for a second.
It’s profound AF, right? It’s like the dirty little secret no survivor ever tells you until you’ve proven yourself a real fighter. Some kind of twisted reward that’s terrifying and pacifying all at the same time. Because cancer has a ripple effect. It doesn’t go away. It stays with you, and not necessarily in a “my cancer defines me” kind of way, but in a Friday the 13th kind of way. Like: is this motherfucker going to jump out of the closet and scare the crap out of me again, or is this movie really over?
Being a patient means your life is in someone else’s much more capable hands. Being a survivor means that it’s up to you to determine if every ache and pain is just that, or if it’s actually cancer jumping out at you again. And I’ll admit that I have, on more than one occasion, gone back to Sloan Kettering complaining of this or that, fairly certain that it’s back — this time in my leg or my neck or my lungs — only to be reassured that it’s not, which I guess is the point of the exercise each time I do it— to make sure there’s a cross check. And I’ll tell you something else: Every time I walk into that hospital I feel safe. I feel that tiny pit in my stomach dissolve for a minute. I feel a sense of calm that I don’t find anywhere else.
And yes, I know I should wake up every day and be grateful for what I have, for the sort of second life I’ve been granted — and I do. I’m alive. I’m healthy. I have two incredible kids I get to raise. A husband I get to grow old with. A life I am proud of. I am, in fact, blessed (for lack of a better word). But there is also a part of me that’s always waiting for the other shoe to drop. There’s a part of me that thinks that maybe I’m living on borrowed time. It’s not a huge part. It’s not something I spend hours or even minutes worrying about, but it’s there. That tiny pit that formed the day I walked out of the hospital, and if I look for it, I can feel it.
So while I’m proud to be a survivor, to be a part if an incredible group of humans who have been through this ridiculous and unimaginable disease, I guess what I want your takeaway to be is this: We are strong and we are brave. But we’re also scared as hell. So just know that. Not because there’s anything you can do about it, and not because it’s even a rational fear, but because while survival and triumph might go hand in hand, fear gets into that relationship, too. No matter what. It’s just a fact of what happens when you survive something you didn’t see coming. And guess what: that’s what it means to be alive.