7 Lessons I Learned As a 23-Year-Old Cancer Survivor (Or, Advice the Doctor Doesn’t Give You About Remission)

I’m in remission. In fact, I recently celebrated my 2 year remission-versary, otherwise known as Remission Day. (Yeah – that’s a thing.) And although remission is joyous and freeing and a giant relief in about a million ways, it can also feel confusing and complicated. It’s difficult to navigate sometimes. It’s like you’ve hit the road for an exciting vacation, and then you suddenly realize that you don’t have a map. So for those of you who’ve never driven this thoroughfare, here’s seven of the things you learn as a cancer survivor.

1. ‘Remission’ does not mean you’re free of struggles. 

I had very high expectations on the afternoon that I found out I was in remission. I thought I’d have the reaction that my parents had, the quintessential movie-moment reaction. They burst into tears of joy, hugged my doctor, thanked him profusely.

I asked him, “What’s next?”

To my parents, I had beaten cancer, so the fight was over. To me, my body still felt like it was deteriorating. I was recovering from surgery and radiation, and there were a lot of rules to follow. For the next three months, I wasn’t allowed to exercise. I couldn’t lift more than three pounds. I had to schedule years’ worth of follow up appointments. I can’t donate blood, and I had to get a new license because I am no longer an eligible organ donor. My body is not good enough for that anymore.

In that moment, I knew I wasn’t going to die, but I also knew that my relationship with cancer was anything but over.

2. You form a strong attachment to the people who care for you and it can be very hard to leave them. 

You see your hospital friends, your nurses, your doctors, every day for months and months. You trust them; you depend on them. Then, all of a sudden, they’ve saved your life and they tell you to go home. You miss them, so this tiny piece of you misses going to the hospital. Bizarre but true.

3. People know what you’ve been through, and they don’t always react gracefully, to say the least.

Google me. You’ll find out in three seconds flat that I had cancer. Don’t underestimate the casual Facebook tag or Instagram photo or mention in that newspaper article about Relay for Life. My employers knew before they hired me. My Tinder dates know before they meet me at the bar for the first time.

Once, while walking through Central Park in the moonlight, my date started running his hands through my hair. Not in a romantic way though. Shit got weird pretty quickly. He was basically giving me a scalp massage while we were hiking up a narrow dirt path in the dark. Then he asked “Is this your hair?” and I realized that he was checking to see if I was wearing a wig.

Ironically enough, he was a doctor.

4. You’re still looking at a long-term commitment to your illness, even if you’re in remission. 

A decade of doctor appointments. It’ll all be over in 2024. That means ten years of staying in an accessible distance from my hospital. I still call it “my hospital” for goodness sake. It’s a long term relationship.

5. Things do not go “back to normal” because you have to discover a new version of what’s “normal.”

“Now everything can go back to normal.” That’s what a lot of people said to me, and I wanted to slap every single one of them. I fundamentally changed because of cancer. My purpose changed, my priorities changed, my world changed. I came out of treatment a different person. I had to figure out a new normal.

6. Remission Day becomes more exciting than your birthday. 

You’ll very quickly realize that Remission Day is 10 times more exciting than your birthday. You worked for this day, and you worked damn hard. For your birthday, you were simply birthed. I mean really, we should be celebrating your mother. Your birthday celebrates becoming one year older, while Remission Day celebrates surviving another year. Remission Day reminds you that this period of time in your life was not a given. You earned this.

7. Remission does not equal “Cancer free.”

By definition, remission is “a diminution of the seriousness or intensity of disease or pain; a temporary recovery.” It means that cancer could creep back in at any time. This doesn’t usually bother me. I’m not scared of cancer. I’ve beaten it once and I believe I can do it again. My checkups are so regular, and I trust my doctors with every fiber of my being – literally, so there is no room for fear or worry.

But once in a while, at 4 am when I can’t sleep, the realization that this thing could still kill me washes over, and I cry until I’m all out of tears.

But only once in a while.