What You’ve Done

Dear Body,
You are the architect of my ailments, you are the sack of skin and bone that I endure in. You are the reason that I have cancer – no one knows the cause, one cell decided to misbehave over and over again until the cancer-y cell was what my body decided to order fresh from the bone marrow.

Medication tames you – or at least tries to do so. The first line treatment worked, but you decided to rebel – you threw anxiety in my face, you made me vomit, you made me tired, you made me feel like crap. You didn’t respond at all to the second line drug, so we stopped that and you decided to rebound – my counts went into a range that wasn’t “we must treat this immediately!” Then we did the third drug: it was the first drug again, but administered via shots to the thigh – you didn’t exactly appreciate meeting methotrexate again, and you fought back by making my hemoglobin tank, making me need blood transfusions. Then we started the clinical trial drug – ruxolitinib (or its more friendly name Jakafi) and it took you a while, but you decided to listen to the drug that was telling you, “Hey, stop ordering those bad large granular lymphocytes! Those are cancery! Hit the road, Jack!” and you have been listening to Jakafi ever since (and hopefully for a long time to come.

However, that drug doesn’t come without side effects – you have changed my body. Before I started the drug, I was 5’7” and 120ish pounds and around a year after I started, I had ballooned to 147 lbs – my highest weight at that time. I didn’t have any increased appetite, I wasn’t on any steroids, just boom – weight gain beyond anything I had had before. Around 27 lbs in a year – my clothes stopped fitting in what felt like overnight. Everyone told me I looked good, that I looked healthy for the first time, that I was finally at a “normal” weight – but I didn’t feel normal.

I have been sick my entire life, I have had disabilities since birth, but cancer felt different – it was different – it was my first “adult” illness. I was used to my other things – the ADHD, the autism, the hypotonia and underdeveloped muscles from the mild cerebral palsy, and even the epilepsy (even if sometimes losing consciousness and waking up on the floor is unpleasant)! Even though I got diagnosed with an irregular heartbeat on the cusp at adulthood, at 17, it still didn’t feel “big” – it felt like more of me and my unusual self. Cancer felt like a continuation of the medical curiosity of Cody, at first I was told it would just be a pill a week to keep it under control, it was nothing big and it’d all be fine – it turned out to be anything but: I dealt with two years of crap on the first line drug, then an almost-three-year break until I started drug #2, then we stopped that after four months, then less than a year later I was injecting the first line drug instead of swallowing it, then we started the clinical trial that I have been thriving in back in August 2021 and at first you responded decently, enough to stay on it, but then 18 cycles in you started a “robust response” (to quote my oncologist); that robust response confused everyone, but it’s not like we’re going to argue with the word robust, are we?

Body, for being one letter off from Cody, you sure don’t like to act in my best interests, do you? That “B” must stand for “bad behavior”, right? All of these things you have made me go through have warped my perception of who I am. I still hold on to things that make me feel like me – I stay with similar style glasses (…or maybe that’s because that’s what looks good on my face), similar looking clothes (…or maybe that’s my autism loving familiarity and keeping things the same), and I keep my hair long. Before cancer, my hair never got excessively long (although for those who have seen it, my high school senior photo had me with “Bethoveen-esque” hair – that wasn’t my goal, but hey, I don’t like haircuts) but I would always grow it out a bit long because I hate haircuts. I don’t know if it is the noise of the buzzer or just the sensory feeling of dealing with the bzzzzzzzzzzzzt of the hair trimmer all over my hair, but I have always let it grow a bit long. Nowadays, my hair is down to the small of my back – it sparks envy from nurses and other medical professionals; one time a nurse at one of my oncologist’s asked me how it was so long and beautiful…I uttered the response of “I dunno, maybe it’s because I am young” and then I realized half a second later that that is rather rude, so I rushed to add it “or maybe it’s cancer!”

Now, Body, you might want to issue a rebuttal to my accusations that you are the reason I am the way I am. I will give you your chance to write a letter to me:

“Dear Cody,

Hey, it’s me, your body. You know, that thing you spend most days sitting around on the couch in, browsing the internet on, looking at memes in, and just relaxing when we can. I’ve treated you pretty well over the years, haven’t I? Think of all of the good times we’ve had together! You’ve laughed at things until my stomach hurt! Think of the sacrifices I have made!

We’ve been through a lot together – it’s not like I wanted to get cancer, either. You know that pit in the depths of your stomach when you took chemo pills? That was me! I didn’t want to take it, but I knew you had to in order to get my misbehaving marrow under control! When I made you vomit? That was me forcibly expressing my dislike for the treatment! I couldn’t control it! Don’t blame me!

Cody, I really like this drug that you have been on for a while. Sure, it’s made me grow a bit in some areas that I didn’t want to grow either – but think of the good things! I haven’t had to tell you how much I disagree with it – we haven’t vomited since August 2021! Isn’t it nice? You haven’t felt nauseous or like you need to take a three hour nap the day after treatment (…when you were only up for two hours) for many years now! We’re in a beneficial relationship and I think both of us really like this drug we’re on – although I could really do without the monthly blood draws, the veins keep telling me they want to stop getting stabbed.

Thanks for treating me as well as you can given everything going on. You’re doing a good job, Cody.”

Thank you so much for that, Body – I will take your words to heart while I keep on with my journey with cancer. We’re close to eleven years into this journey, we hopefully have many more years to go – let’s see where you bring me next.