Letters To Amy : Desert Island Discs Edition

I started corresponding with Amy as my penpal earlier in 2020 after exchanging post cards and short notes for years. We dubbed our afternoon movies Tuesday Matinee’s (heavily featuring Hannah, Jackie, Tuesday, endless snacks and platypus crocheting - you have seen the Crimes of Grindelwald, haven’t you?)  and one time I was even on the receiving end of a letter of her’s that was a mailed and stamped Maple Cookie box 😅.

We met briefly at work but after she shortly reached out once I had my stage 3 diagnosis via e-mail, I’ve been so lucky to call her one of my close friends. I was reading back some of our prime letter writing content and while I will only share my own stories here out of privacy, they really opened the dusty book of memories for me: I document some pretty hilarious and heartbreaking pieces from my life. I figured I would share some here. 

(background for this letter: there is a music station in the UK that encourages you and your friends to come up with 8 songs you would listen to straight on a desert island. Here are my picks!)

April 2020

Dear Amy,

The notion of a multi media platform to your last letter aka the supporting Spotify playlist got me so EXCITED. After a fair amount of hum-ing and haw-ing I think I’ve finally got my picks nailed down!

You’ll be pleasantly surprised to know that I loved your song choices. Billy Joel is a staple in our household and I was actually supposed to BE at the Bruce Peninsula concert! What a coincidence? (Is anything ever coincidence?). I couldn’t make it, but it did remind me to reconnect with an old high school friend whom I bonded with music over. 

I love the idea of Desert Island Discs and it really got Jeff and I thinking! I definitely want to challenge my friends to it.

So here we go. The top 8 in no particular order.

Friends - Francis in the Lights (feat. bon Hiver)

I have a long history with Kris. When we were in grade 9 we made this unbreakable friendship and when we came into each other’s lives, both of us seemed to blossom and find ourselves (browsing little vintage shops, eating pad Thai in the back of movie theatres, drinking Venti Vanilla Bean Frappuccino’s  (I think they’re like 1000+ calories 😅) dreaming of living in New York together (heavily inspired by how many times we watch Rent). When she married Graham, she said our foursome friendship is the best thing that has ever happened to us. It’s pretty special to be best friends married to best friends. When Graham found this song it became a favourite and one that I can always listen to over and over. 

Be Here Now - Ray LaMontagne

I first met Jeff when I was only 18 and he was 24. It was pretty scandalous Loblaws drama at the time (he was my boss) and I remember barely being able to get the words out of my mouth to my mom that I wanted to sleepover on Valentine’s Day. He made us pasta (where his roommate lovingly sat at the table with us, eating a portion) and watched a Disney movie (Up? Ratatouille?). We fell asleep holding hands listening to this album, so when things seem so difficult now I like to think back on these easier times.

“Don’t lose your faith in me and I will try not to lose faith in you”

Doin’ It Right - Daft Punk

Okay this song reminds me of Chapters and a hint of my cancer diagnosis. When I used to arrive at the store at 5AM my absolutely favourite thing was to turn on the lights and blast music - something about being alone in this HUGE store surrounded by books. Honestly, I couldn’t believe that I lucked out to get a job that allowed for me to do this. Every morning it put me in a great mood and pumped me up for a great day (on repeat - can’t hold us/Macklemore and any Justin Timberlake). Nearing the end, this was on my playlist. I was going for ultrasounds, biopsies and appointments and trying to keep up the momentum, but I grew to knew something was wrong until I finally took leave in November 2014.

Jolene - White Stripes

Have I ever told you about my long standing love for the White Stripes? When I got an .mp3 player in grade 10, I decided I would become a little bit gothic. I loved feeling like I was ~so~ emo (praising over Evanescence or Good Charlotte), but Jack and Maggie. Were they lovers? Were they siblings? What about that sex tape! I referenced them in my yearbook and when I saw them at Bluesfest - what I attribute to opening my eyes to what music could really be.

Steal My Girl - One Direction 

It’s no secret that I am obsessed with boy pop stars. No matter the age I’m still fangirling. Jonas Brothers? N*Sync? Shawn Mendes? Justin Bieber? So when I got cancer my sister got me floor tickets for us to see One Direction in Montreal where we shopped and ate and it was one of my happiest memories to date. We always have the best adventures together which usually revolve around road trips, concerts and smoked meat spaghetti 🍝 

John Legend - Let’s Get Lifted

My parents met working at a night club in Toronto. Most kids were listening to Kidz Bop in school, but I had R&B in my soul. Friday nights spent on Limewire finding all my favourite new songs (while playing Neopets and eating pizza awaiting the downloads.. I only got porn and viruses on my family computer a few times…). John Legend was our car soundtrack to school in Grade 9, and it became my Do It For the Love pick, where I got four tickets for free because of my MBCA diagnosis to see him at Christmas with my family in 2019 !

Better Together - Jack Johnson 

If I could pick someone to soothe my soul for the rest of my days it would be Jack Johnson. When he came to Folk Fest and I couldn’t find anyone to come with me, I was determined (cancer and all) to go alone. Doing something on my OWN again - I relished in the independence! I ordered a poutine and sat on the grass - I was people watching, it was warm and I felt alive! When he came on, I realized I was small enough on my own and could scoot up right up to the front.

Tall Tall Shadow - Basia Bulat

Jeff and I were moving to Westboro - this is where our lives were going to start! I loved walking to get groceries and a coffee, all the fun food and indie shops. The Record Store quickly became a day off afternoon stroll for us when we saw Basia Bulat’s new release. Bringing her home, it became our most played record that year and during the 2020 pandemic Bluesfest summer we got to see her play live from our cars! 

Records remind me to listen to full albums again and appreciate all of the songs, and the songwriter.

Honourable Mention  

MTV Unplugged in NYC - Nirvana 

When Jeff and I started dating this was our non-stop. 

Thank you for the inspiration and making this grey snowy day in April liveable. Can’t wait to hear from you next. 

Love,

Sam 

Dying with Grace

About a week ago I met at the General Hospital to see my oncologist. It was a conversation I knew was coming but I still didn’t really know it was coming

“If it was my wife or sister I wouldn’t recommend they do anymore treatment. In fact, your quality of life may be longer and better”.

It’s been the better part of 6 years and being given permission to be still now, to be grateful and applauded for what I’ve been able to accomplish feels good. My mantra has always been to fight for those living with MBC when they couldn’t anymore - now the time has come when I hope someone will do that for me. 

(There was a new drug, Tucatinib, that I am not going on. It is so similar to Neratinib, which I’ve squeezed all the benefit from during the pandemic, it’s not expected to work all that well. Then what do I do, after possibly burning myself out from handling this new drug  that may last a few months (diharrea, nausea, extreme fatigue, possible dehydration). There isn’t a plan anymore. A plan is always something I’ve felt comfort in - I always know what will happen, no matter how bad, I will get through it.)

This time I’m left with this insurmountable decision - one that you think you’ve made when you’re well  (“I would never jeapordize any of my QOL!), to letting that fear creep in (“well maybe I can handle one more treatment”).

So now I look for grace to handle what is inevitably going to be my decision alone - do I try another treatment? Or do I enjoy the time I do have - which looks a lot like printing photos for new vinyl photo albums, getting my health records documented on my blog, seeing my friends and family, putting some early work into this years Turning the Page on Cancer, snuggling dogs and (hopefully) being able to see the gorgeous end of the renovation.

PSA:

I still desperately want everyone around me to be normal. I’m not deep down sad - I feel a sense of change to how I’ll do things now. Unapologetically and boldly, excited about accomplishing what matters and makes a difference to me. I feel the same on the inside. I’m currently still watching the same bad reality tv and I plan on getting the new BTS McDonald’s meal tonight with Lianne and Jeffy. 

As for a timeline, I know after 6+ years no one can tell me definitively how to navigate this. My oncologists have told me to expect sooner then later but they aren’t sure. 

That’s the cancer update I never wanted to post. Now it’s done and I feel an immense weight lifted off me. If I have any advice for those that will unfortunately come after me, it was that I spent so. much. time. Where I was thinking and planning for this moment, and I wish I hadn’t. The anxiety of sitting in this negative mind space for so long wasn’t worth giving up any time when you could be feeling good.

I’ll update again soon.

Sam xo

“This is it”

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

Holiday Update

Happy Holidays!

I’m happy to report that I wake up every day still feeling good. I’m very grateful for that. The Neratinib continues to work and its looking like I’m going to have a very Merry Christmas! Since 2015, I have always had to live in cancerland with new treatments, side effects and surgeries back to back. I’ve never been stable for this long, and I know i’m lucky to have this time. 2020 wasn’t an “ideal” time to feel good - I can’t travel, see friends, or shop in real stores-  so I’ve taken this time to really think about my morals and values, and dig deep on the non-cancer part of my life. This process is twisty, painful, shocking, joyful -  every time I learn something new about myself I yearn for more time to live out these new realizations.

Does that make sense? 

Okay, I know most of my family and friends are just here for the photo dump - so, enjoy! My life has revolved around the dog park, picking the perfect (local) gifts to give and learning block stamping (thanks to my new book)! 

(This wig is from when I FIRST was diagnosed. Got it washed and styled and kind of find the darker colour refreshing!)

Brigette & Ryan got back their wedding photos (📸: Amy Pinder Photography) and they are stunning. So happy to be by your side on your big day.

@peopleiveloved

Sam

30: I Made It

I have a wrinkle 

A worry line
In between my eyes 

I like to think it’s from 
Squinting at the bright sun in Mexico 
Concentrating on a concept in a loved book
Confused frown that I ordered a gin and tonic 
and this was most definitely soda

I ran to the bathroom mirror 
To the bedroom mirror 
Frantic 
I have a wrinkle!
I’m so grateful I lived long enough to experience 
This wrinkle

MBC Day 2020

Recently I’ve started to feel like a cancer veteran 

Calming the newly diagnosed and informing the advanced

I explain what WBR stands for

(Whole brain radiation. However, I try to avoid telling people it almost killed me.)

How a lung biopsy feels

(Coughing up blood is normal) 

What to do to prepare for chemo

(after 50+ sessions everything they say about mints and fuzzy sweaters don’t matter because you’ll sleep through it anyways)

If you ask me, what’s a port?

Just get one and don’t ask questions

I realize I’m 29 though

I should know that KUWTK 

Is for Keeping up with the Kardashian’s 

And getting real tattoos instead of radiation tattoos 

I should be worrying about buying a house and having kids

And not about clinical trials, prognoses, and medical insurance

I should be waking up AT 5AM, to go to a job I love 

Not going to bed at 5AM because 

insomnia, intense heartburn, pain in weird places, and crying uncontrollably

Despite this I love my stage IV life 

But imagine what it could’ve been 

The number of women expected to get breast cancer in her lifetime: 

1 in 8 

The number of women expected to be diagnosed with Metastatic Breast Cancer (MBC) in her lifetime: 

Unknown 

There is no data and statistics recorded for those of us living with stage IV. When we progress from early to late stage it isn’t recorded. We want more research, but we don’t even have the basis to found it on. 

Today is #metasticbreastcancerday. I’m fighting tirelessly to create stage 4 awareness. We need you to be an MBC ally - it shows you understand, will advocate and support #MBC. 

Make me count. Sign here. 

I’m back!

Hey!

It’s been such a long time since I’ve posted regularly. I guess I deemed blogging a thing of the past, turning to social media to document my crazy cancer life. 

Don’t think that I’m going to stop putting my face in your feeds anytime soon though. It’s October which means it’s breast cancer awareness month. It turns out that I have a lot to share this year but Turning the Page on Cancer takes a whole post of it’s own

(quick plug (I can’t help it!!) : Join Turning the Page on Cancer, our read-a-thon on Sunday October 25th! Raise money and awareness for mBC and commit to reading for a full 8 hours straight! To learn more and join click here 💕) 

So,  the last time I really posted was when the pandemic started. Let’s go back.. 

After I wasn’t able to be on my clinical trial any further. I waited for my thinning hair to grow back but..it didn’t. I had a reverse mushroom cut and finally I decided to embrace the bald going forward. Here’s a video of me shaving my head (for the fourth time):

Months went by and they felt so long. My mom took a leave from her job and started coming over every day. I was so used to being alone, that the quarantine changed my life (for the better!). My days started to look like this:

I started becoming more active in the online cancer community:

I got  back into scrapbooking and art journaling:

Some redecorating:

Peel and stick wallpaper and a handy husband!

And lots and lots of:

During all of this I ended my trial drug (mentioned above) - my eyes were so damaged , my oncologist told me if I continued I’d go blind (keratitis). So even with good scans (although I DID debate if going blind was worth it - that’s how desperate I am), I switched onto Neratinib. It’s a take home chemo. I take 4 pills every morning. I’m not going to lie, the first month is shitty (literally). I started by eating a Crohn’s like diet and added things back in as I went. I suffered but not terribly. I am to the point now where I rarely take Imodium! 

The loss of appetite and taste changes are affecting me the most - I’m not even sure at this point what treatment they’re from. I’m smaller then I was at 21, and while you may yearn to be skinny, having an advanced cancer has made me open my eyes and be realistic. Skinny isn’t sexy or anything to strive for and the fact that it’s normalized makes me want to throw up. I want to be strong. I want the weight on me to be able to afford any sudden weight loss if something were to happen to me. 

My scans show I’m doing well on Neratinib. The nodules in my lungs have decreased significantly! I get scanned again next week, so we get to see if I’m continuing to show recession.  

Unfortunately, it isn’t my body that’s the problem. My oncologist told me that my body wouldn’t be the cause of a sudden decrease in my health - it’s my brain, I have little to no options left. I have had two craniotomies and they can’t take any more of my brain out. I have had whole brain radiation and targeted radiation. I have exhausted all my options. So I made the choice not to scan my brain going forward. 

My oncologist explained it to me - if I’m feeling good and continue to scan my brain, what can we do about it if the results are negative? Nothing. So why look if there’s nothing left we can do. 

It’s a bold and scary move. I open my eyes every day assessing my symptoms - blurry vision, dizziness, pressure headaches, random nausea. With that being said, I’ve never felt better. More clear. I rarely ever cry or worry. Realizing I don’t have any control has made me feel free. I’ve given myself permission to do whatever I want these days - sometimes it means staying in bed until 3, some days I wake up at 7 all ready to go. 

I don’t allow myself to think of the future. It’s always been the way I’ve coped with my mBC diagnosis. When I’ve planned something far in advance, I am so disappointed if it doesn’t happen. Not planning is hard to do, requiring strict blinders at all times. It’s not that I don’t acknowledge my cancer, I do. I just choose not to think about it a lot of the time. I believe in modern medicine that will help keep my mind stable, medicine that takes pain away. I find ways to enjoy my life as it is at that moment. When my eyes were sore and I couldn’t read, I listened to audiobooks. When I started limping, I continued to dance - staying in place, only moving my arms. I’ve been asked why I’m able to stay positive. I truly think it’s because even when I can’t see, hear, walk, read - I adjust my expectations. It usually means lowering them. I try not to dwell on the things I can’t do - I always focus on the things I can and still look forward to. When I close my eyes at night, I ask for guidance and strength. I don’t barter or plead for a miracle. Metastatic breast cancer is the life I’m living and every day I’ve had to choke down this reality and learn to accept it. It’s the hardest thing I’ve ever had to do. I don’t really have a choice though, do I?

xx

Sam