It’s Complicated

Cancer took my twenties from me. It took my potential career from me. A year into my post-college job search, I was told that I had a “hematologic malignancy of some kind.” Over 10 years later, I am still considered “mildly immunocompromised” despite my neutrophils being normal. The neutrophils are those little white blood cells that they give you a bone aching shot of Neupogen/Neulasta/filgrastim to create (ouch, just thinking about it makes me ache!). Now, you might be asking, “Cody, what were you going for a job in that you can’t do because you’re immunocompromised?” and the answer is that I have a B.A. in Special Education K-6. So, I would be working with the walking and talking adorable germ factories known as children – the carriers of all kinds of new and interesting diseases!

Not being able to teach has made me reevaluate myself. Who am I if I cannot do the thing that I went to college for five years for? I’ve never really based myself off of that, I never viewed it as my identity, but I always saw myself at least trying to teach and be as independent an adult as possible. Now, it’s one thing if I were to try and fail to teach due to my disabilities or whatever else came up – it’s a totally different matter when it is stolen from me, easier than candy from a baby.

Cancer took things I already had and amplified them, not all negative. My entire life, I have been the kind of guy who helps my peers. I have been told how when I was in my self contained special education classes, I was the one who “translated” for the kids that the teachers couldn’t understand – I told them what the kid was saying (or, at least, my best guess). I don’t remember those days but if I had to guess why I did it, I think it’s simple: I wanted them to be seen, I wanted them to be heard. When I was older, in college, I faced some professors who had their own views that did not match their expectations of me. I had to research my rights under the laws to see what I was entitled to and exercise those rights. I was so good at it to the point that the attorneys my university had on retainer asked me who my attorneys were – they were rather surprised when I told them that I wrote the letters myself.

Now if I was like this pre-cancer, what did cancer do to me? It put those skills in overdrive – when I was diagnosed I looked up everything I could about my cancer from the etiology of it to resources to help me out. Eventually, I began sharing these resources, which led to me stumbling into supporting others, becoming an accidental advocate, helping out as many people as I can with my overwhelming document of resources. Cancer turned my helping instincts into who I am now – I want to help as many people as I can whenever I can. I eventually formed a Facebook group for my cancer to help people find the support they need and after three years, the group has over 1000 members for a disease that has an incidence rate of 1 in 5 million in America. How does that happen? I didn’t set out to do this when I got diagnosed! The stone just kept rolling down the hill gaining momentum and it just keeps going faster and faster.

I have always been a shy person, a wallflower, the person who doesn’t raise his hand in class even though he knows the answer. I have always liked my shell, my comfort zone is as it says in the name: comfortable – I like being comfy, even when it isn’t always the best thing to stay in stasis. I never expected to turn going to YA Cancer Gabfest a couple of times to finally going to Zoom groups after psyching myself up for years to getting published in a magazine to gaining my first true friends to actually meeting them in person! I have met some amazing people throughout my cancer experience that will hopefully be there the rest of my long life. I have people who will be with me on this journey and we will share the ups and downs, highs and lows, the good and the bad.

If I could go back and wave a magic wand to make it so I never had cancer, I don’t know if I would. It has forced me to grow in ways that I don’t think I would have been able to otherwise – I was already chronically ill prior to cancer, but nothing like cancer, that thing that is accompanied by dramatic music whenever it is mentioned in the movies or on TV. I only had the stuff that made people go “Oh, epilepsy, that’s where you see flashing lights and have a seizure, right? (I don’t have photosensitive epilepsy – it actually only affects 3% of epileptics)” or “Huh, what’s that?” in the case of my dysgraphia (it makes it so my handwriting is illegible). As strange as it sounds, cancer helped me, no, forced me out of my shell. It led me to finding the people I connect with who I would have never met if it weren’t for this horrible, crappy disease.

Cancer takes and takes and it takes – someone is there one day and gone the next. Someone is clear for a year and suddenly they tell you it’s back – they’ve had another recurrence and now their team is figuring out next steps. Who knows what is going to happen with people like that? If I could talk to cancer, I would ask it why, why do you have to come back after someone is done with you? Didn’t we deal with enough treatment for a lifetime? Apparently not. Cancer takes the thoughts we had prior to it of “Oh, that’s just a cough.” when we are sick and turns it into “Oh no, I coughed. Do I need to call the doctor? That felt weird, is it cancer?” Our experiences with cancer give us whatever we make of it, be it pivoting into advocacy, finding some friends, or whatever else may present. Find whoever or whatever you can during cancer and make what you can out of it, you might find the cherry to put on top of the rancid sundae that is cancer.