What is Normal?

My name is Tori and I am 24 years old. I was diagnosed with acute myeloid leukemia at 19, right before I was about to finish my second quarter of my sophomore year in college. I remember I had just gotten back a paper from my philosophy course that I got 100% on, and I was 2 or 3 weeks away from finals. My first year of college was a rough one and my grades were not at all worthy of putting on the fridge, but in my second year, something had changed. I found motivation and actually had a desire to do well, and to meet that desire. Now this wasn’t the only thing my diagnosis messed with but the fact that I had to take an incomplete for that quarter and didn’t get any credit for the courses I had worked so hard for just felt like this looming symbolism over my life. At the time of my diagnosis, I was working my first official job, I was in my first official relationship, and I was able to be myself with my friends. I think I was happy.

“How long will it take me to feel normal again?”

I sort of remember my first week at the children’s hospital where I received all my treatments. I sat up in my hospital bed, hair hadn’t even started to fall out yet from the chemo, and I asked my oncologist, “How long will it take me to feel normal again?” I can never tell if the question quite caught my doctor off-guard, but looking back now I know we were thinking about totally different things. He was thinking about how to kill what was inside of me before it killed me. I was thinking about how if I live, what is that going to be like after? I had no idea, and frankly neither did anyone else. But he gave me an answer anyway. “Some patients begin to feel a sense of normalcy around 3 years, maybe more.” He said this before it was eventually decided I needed to have a bone marrow transplant because the chemotherapy was not doing enough work on its own.

While there was a lot that went on during my 7 months of inpatient treatment, I do want to focus on the transition back to *gasp* real life afterwards. I will note that during my treatment, all I could think about was the life I was missing out on. And on my week-long stays at home (which I was actually terrified to do since there were no nurses and doctors and IV pumps in case something bad happened), all I could think about was how the germs around me which I couldn’t see were a danger to my health. I couldn’t leave the house without wearing a mask (which now I am heh-heh-ing at everyone complaining about having to do that today). I couldn’t stand for too long without feeling totally winded. I couldn’t stop thinking about how I would not be able to provide a family for my partner. I couldn’t even think about going places in the future without absolutely losing my sh*t because I didn’t know when that was going to be. I was 19, going on 20, and so were all my friends, so was my boyfriend at the time. We had no idea how to handle something like this.

I lost a lot in the first year after I was officially discharged for my cancer treatment. I lost my partner, I lost some friends, I lost my mind several times. I was on medications that had emotional side effects and if you mix that with trauma you get a whole lot of thoughts and behaviors which make you feel (and look) crazy. But what’s important to me now is that when I look back at myself, I see this severely injured being who maybe just didn’t have the right support around them at the time. I have to be softer with them, care for them the way they didn’t allow anyone to care for them. And I have to remember with all my heart that nothing was my fault, nor my parents, nor my friends. Sh*tty things happen, and they happened to us.

The truth is I never stop thinking about everything that’s happened over the past five years..

When initially writing this piece, I started over 5 or more times. There is so much I could write in response to any prompt or question. I feel like my whole diagnosis, treatment, and life afterwards is important to any and all aspect of my experience with cancer. So yeah, even when you’re done reading what someone’s written or listening to what they’ve said, there is always so much more. The truth is I never stop thinking about everything that’s happened over the past almost 5 years, which as you can imagine messes with someone’s mental health and how they interact with others. There are reminders all around me that there was a before, and I am now hyper-aware of the after I am living in. And while I’ve gotten better at getting a hold on those thoughts as opposed to letting them eat me alive for the remainder of my days, it doesn’t feel as though this transition back to “real life” ever ended. It’s still happening and I’m still learning to love the me that I am today. We are not and will never be who we were before cancer, and that’s okay. It’s something I still have to actively accept on a day-to-day basis, and even though it doesn’t always work, I want people to know that there is no blueprint and while that’s pretty frickin’ scary, it’s okay. Unfortunately, this is rarely taught to us and is hopefully among the things we learn. Sometimes I wish I could go back in time and give myself a little nudge like, “Hey… ya know what, you are going to miss out on things but that’s just your life right now and eventually it won’t be.” Even though I can’t actually do that, at least it’s what I’m thinking now. It was all painful, it still is, and I am here, almost 5 years later. I still deal with mental health issues, medical issues, and the fact that a majority of the people in my life will never fully understand what I’ve gone through. Sometimes I feel like my fight didn’t begin until I found out I was going to live, but no one can fight 24/7. If I had to give any sort of advice to someone in that beginning transition stage, I would definitely say rest. You deserve it.