I actually wanted to name my final post - the one where I ask Jeff to post if anything goes wrong - “This is it”.
Thinking about it, though, this is it. These times right now. A lot has been going on regarding my cancer in 2021, and I was lying awake in bed last night thinking how important these times would be to document and look back on - the in between moments where everything is still hazy and I have no idea how things will work out.
A quick rundown if you’re new here: I’m Samantha Mitchell. When I was 24, I was diagnosed with Stage 3 Breast Cancer (2014). By 2016 it had metastasized to Stage 4 Metastatic Breast Cancer - in my bones, lungs and brain. Six years later, I’m 30.
The innumerable treatments and side effects I’ve endured have made me an enigma to my oncologists and cancer world - I should have been dead a long time ago. Yet, I persevere (with a robotic metal enforced arm and a few too many treatments under my belt).
March 25th 2021
I learned a bit more about my clinical trial today. I didn’t want to discuss it openly until I knew more information and could speak about it more clearly.
Things have been delicate over here for awhile. Neratinib (which is a pill form of at-home chemotherapy) has kept me stable over the pandemic. I stopped doing brain scans in February of last year - I was out of options, the rationale being why look and stress if I couldn’t do anything about it anyways. Last week, though, I started having mobility issues again with my right leg (weak, shaky) and a slew of other random side effects (numb lips, a shingles diagnosis (?) , painful cramping and bloating). Which led me to today - with a prescription for steroids (fml.., iykyk) and a brain MRI on Tuesday.
Let’s take it back a little though. I’m getting ahead of myself...
In February, my oncologist told me that he had a trial for me that was particularly exciting. He hasn’t given me much information yet, but with some of my own research and the little info he did give me I have deduced it will be like a CAR-T cell treatment for breast cancer.
It is a stage 1 trial, which means it hasn’t been performed on humans before. It’s incredibly risky, the side effects can be deadly but it could lead to complete remission. Cured. A word I never thought I would hear someone in the medical field ever say to me again.
I have never allowed myself to think about being cured. I won’t even entertain the idea of having a career, or the ability to adopt children. I can’t allow myself to give in to the hope. I live my life in small three month increments - a stable scan will mean getting to see Harry Styles in Montreal, seeing In the Heights in theatres, a getaway with Jeff. I have shifted my whole life to live this way.
(As I drifted off to sleep last night, I dreamt I was in school to become an interior designer. I was all choked up when I awoke, so point proven).
I don’t have any of the usual normal-to-me symptoms when it comes to brain metastasis. Headaches that won’t go away with Tylenol, double vision, confused thinking, slurred speech. Part of me thinks I’m just desperately out of shape (I hope that’s the case) but we’ll see on Tuesday.
I’m not sure what the parameters are around the trial (they do accept stable brain mets) but I’m fairly sure if things aren’t stable up there I won’t qualify. I’m at the end of the line when it comes to brain treatments, so I’m relying on this.
Except I don’t feel nervous or empty yet. Why don’t I feel sad, with nervous anxiety over it? I’m over here watching the finale of MTV’s The Challenge like nothing special is happening! The nurse was telling me to show up at 2:50 on Tuesday for my MRI and I was smiling and thinking how it’s all going to be okay. Where did I get that reassurance? Am I blindly trying to cope?
I never wanted the attention to be on me, exactly (although I admittedly like all the attention - I’m a proud Scorpio). I always wanted my narrative to be focused around how rare it is to see a young woman live and thrive with MBC. This time, in a panic that won’t be buried by new kitchen appliances and tiles, experimenting with new wigs, big Sephora orders and trying out nail wraps, I can’t keep the cancer anxiety at bay anymore.
So I started reaching out to others in the cancer community. I have been so hesitant to let anyone that isn’t in my immediate circle in my life for years.
“I don’t need a cancer support system!! Look at all of my family and friends I have right here beside me!!”
That is, until you want to talk about the dark stuff. Can’t talk to mom about that. Then there’s the sad stuff. I don’t want to burden Jeff with that. Plus the I-cry-when-I-think-about-you-at-the-cottage-without-me stuff. I can’t even find the words to say that to my best friends. There’s something about speaking in medical terms and not having to explain yourself. The cyclical grieving. Someone who knows.
I took the plunge into #bcsm (breast cancer social media), became involved with OMG (Ottawa monthly gatherings), and started attending The Writers Collective, led by my loyal new friend Lindsey. Every time I reach out to the cancer community and they open their non-judge-y arms to me after all this time, I’m grateful. It feels right.
So right now, at 2AM, I’m debating why I don’t live a nocturnal existence, going through the drafts folder of my blog. It’s like a good, moving, eye opening deeply sad and troubling kind of torture. I have a dozen more posts from over the years that I didn’t have the courage then to post. Since I’ve become dedicated to transparency, I feel confident to share these feelings in hopes that they’ll find their way to someone that needs to hear them now. It’s also part of my life that I want to keep documented here. I’ll be posting them over the next few months with the dates posted in italics. There are some dating back to 2014 and admittedly, it was hard to go back and read my naïveté (glad I finally got to use that word).
Accepting all the good vibes, puppy pictures, prayers, superstitions and anecdotes you can give me for my scan on Tuesday.
Talk soon.
xx
