i am not the word

I keep trying to write about my experiences through chemotherapy. My first time trying typing this up, I gave a play by play of what it literally was like. It bored me to tears. I scrapped it. The second time was more of an emotional rendition of what it was like, and honestly it was just not quite doing it for me. So I scrapped that too. I have sat and looked at both of these attempts and neither really compelled me to hit ‘Publish’.

The fact of the matter is, the literal ‘story’ of chemo for me was pretty anti-climactic. Not that I was expecting something ‘exciting’ by any means. I had no expectations going in because I never really thought about cancer before I had cancer. But the day to day of chemo was pretty basic. I went for 6 cycles, with 4 rounds of chemo each cycle. Every Monday and Thursday with a week off in between cycles. I had to get blood work done before each week of chemo to determine something, who knows. I can’t remember the specifics.

I find it fascinating to be in cancer groups when they talk about the specifics of their blood work or their chemo. Right now, if you were ask me what chemo I had I wouldn’t be able to tell you. I have my doctors files and could find out, but unless you are someone going through multiple myeloma treatment yourself, you wouldn’t even know what the words I write mean, hell I don’t know what it means and I had it coursing through me.

When my oncologist explained that my chemo would be the same in Canada as it would be in Ecuador, I am sure he told me what exact concoction he planned to give me. But at the time, I just trusted him and emailed my doctor back in Canada to just check in and see what he thought. Doing chemo in Ecuador seemed like the best plan so I did it. Did I double check the chemo medication names to what they give in Canada? Or as the cool guys say ‘Did I do my own ReSeArCh?’ No, I am not a doctor, I trust the oncologists, that’s what they studied. I studied literature and hadn’t gotten into a phase of reading about cancer just yet. But don’t worry that came in the form of memoirs soon after.

Now, hearing stories of people’s experiences of chemo in Canada during the pandemic, I am glad I did stay put. Nick was allowed to come with me to my appointments. Every single one. Even though at first they said he likely wouldn’t be able to. But the reality was that I had my own private room to sit in for chemo, so we weren’t exposing anyone or being exposed to anyone but my medical team.

Chemo consisted of sitting in a chair for hours while they put an IV in me and pumped liquids into my blood. The actual process was about as exciting as watching paint dry. I usually brought my laptop, my kindle and my phone. Always planned to do work or read, but played games on a my phone a lot as time went on because my focus was harder and harder to keep in check.

I am an emotional person. I assumed after my first chemo session where I cried through most of my time there, while squeezing Nick’s hand, that I would spend every session crying after that as well. But I didn’t cry often. I became pretty numb to it all in the moment. There were moments I would break down, alone in that room with Nick. But for the most part, I was Linkin Park numb.

Chemo is such a wild ride, because you read about these side effects – the ones they tell you you could have, the ones other people have had – the first few cycles, I thought I was getting off scot-free. Fuck you chemo, my body is a machine and ain’t going to take any shitty ass side effects. If anything, after my first cycle, I started to finally feel better. The ridiculous pain in my chest that sent me to the ER in the first place was going away. I was finally about to move more and get up off the couch. I could work (teaching virtually)… more on that interesting decision later, it needs its own post.

And then it hits. The nausea. The diarrhea. The neuropathy. The deteriorating eye sight. The chemo brain. Here I was thinking I would spend my chemo days reading and working, and I just couldn’t. I had to magnify everything on my screen just to be able to read emails and student work. My brain could only handle so much, and once I got my work done I barely had any energy or brain power to read for pleasure. And even if I did, the words would have to be magnified the size of the second line of an eye test and I would constantly have to reread things I already read just to remember what I read last time I opened the book.

I was terrified that my eyesight would be like that forever now. Two years post laser eye surgery for nearsightedness and now I have become farsighted from chemo!

And the neuropathy, oh the neuropathy. I wish I could explain to you what this felt like without ever making you feel what it felt like. It was not painful, for the most part, which I think was due to the medication they gave me. I remember my medical team at the start asking me if I had tingling all the time. I remember the language barrier making the question confusing for me at first. But about 3 cycles in and I was tingling all right. And so the medication started. But the tingling was ever present. The tingling for the most part felt like when your limbs ‘fall asleep’ or what some call ‘pins and needles’.

But as I weened myself off the many pills I was taking a day – was it 4 or 6, who knows – I thought I was okay. Yay, the neuropathy was gone. (Narrator: it was not gone.) It came back with a fiery vengeance when I went completely off the pills and had to wait to get access to more (transition from Ecuador to Canada with poor planning on my part). It kept me up at night, and I could not get comfortable. I sleep on my side so every damn time I turned in my sleep, I had to adjust my legs so one leg was not touching the other. I couldn’t wear socks or pants to sleep because the fabric touching my skin would somehow flare it up.

Nausea was rough, but honestly I still ate. I rarely felt too nauseated to eat. I love food. I wasn’t really a puker. But the other end of me… well, let’s just say Nick had a constant rotation of gatorade in our fridge cause I was losing liquids and needed the electrolytes very badly. It didn’t matter what I ate, it flowed right through me.

So chemo sucked, but also was anti-climactic at the same time. The physical act of being there was just that, being there. In a room. Mine happened to be a cute private room where one of the nurses would bring me tea and crackers, and a lady would come massage my feet. At first I never wanted the massage cause I am not a fan, but it did help with moisturizing my cracked up feet. Did I mention chemo dries the shit out of your skin and you need to moisturize yourself constantly? Yeah, that’s a thing. But there were times when the massage helped my neuropathy and times when it hurt.

I am sure there is more to it than all this. I will think of something that I wish I added or there are parts of it (like working through chemo) that deserve a whole essay of their own. But I have been trying to write this for awhile and I finally felt like writing today, inspired if you will. So this is a start anyways.