4.01.2020

5 Ways To Handle A Quarantine


I have started this post so many times. First, it was a look at the downward spiral COVID-19 is bringing to the whole world. Then, it was about how unfair the Coronavirus is on cancer patients. Lastly, I made a “funny” post detailing how hard it was for everyone to live the quarantine life - one that I’m very familiar to.

None of them felt right. I felt like I was over-exaggerating, feeding into the fear mongering. I felt as if I was looking for pity, screaming “Don’t forget about cancer!” during a global pandemic. Being funny seemed wrong; it wasn’t the time or place to feel satisfied with a big ol’ “I told you so!”.

A couple of days ago Jeff asked me if he should still post his pictures of new beer he was carrying on Instagram (@beeratbrowns).He posted a poll asking if his viewers thought it was insensitive and the answer was an overwhelming NO - anything to take my mind off of March 2020 PLEASE!

The best way to describe how I’m feeling right now is happy, sad, and worried all at the same time. It’s how I’ve felt the better part of 4.5 years. It’s likely how most of you are feeling now. 

Everyone is affected; you’ve been laid off, you are elderly, your parents are elderly, can I still walk my dog? My kids are driving me crazy! Amazon workers have the virus?! I can’t eat Chinese food anymore! My massage was cancelled? HOW WILL WE COOK FOR EASTER?! Stay home! Stay home! Should I make my own mask? “My ratings are higher then the finale of the Bachelor!!!!!”. 

You are being asked to work HARDER under dangerous circumstances. You are afraid and lonely and doing your best. 

I’m not going to make this about cancer. Just some things I’ve learned after spending a lot of time alone. Mistakes I’ve made so that you don’t have to make them.

I don’t have kids. I don’t go to the gym or excercise (like at all) (even before cancer). My life is way different then yours. I’m just speaking from my own experience. 

When you’re alone for hours on end, it’s hard to quiet your mind. Your brain jumps to things you could be accomplishing with all of this time, the dread of getting up to another day of nothing, and instead of doing anything, mindlessly scrolling. 

By the time your day has ended you’ve had way too much time to think about what a failure you are - unproductive with your time. You should be doing online yoga, enhancing your cooking skills, cleaning out the graveyard of hair products under your bathroom sink! You should be saving hundreds of dollars (the need for a Nintendo Switch was real though!), and less time worrying about how your artificial nails are going to grow out and watching YouTube videos of stylish quarantine haircuts. 



Mood swings are normal when your mind goes from Netflix (Carole Baskin fed her husband to the tigers), to craving someone new to talk to, a change of scenery, and thinking about your inevitable death all in an 8 hour span of time. 

Being at home is the hardest thing I’ve ever done. 

It caused me years of depression, anxiety, hopelessness and self hatred.

It still does, some days. I told Jeff yesterday that I wasn’t feeling good. Those are the words I use when I can’t describe how I’m feeling or where it’s all coming from. I can talk to my parents on the phone like normal and then hang up and have a break down. 

It sounds great to stay at home every day! 

I’ll write a bestseller, get perfect skin with all of those facemasks I’ll be applying, read all of the books, do all of the things! 

No, you won’t. 

I’m here to tell you that it’s okay to be unproductive sometimes. Even though you have this time, it doesn’t need to be filled. Sometimes taking care of yourself and others means having a nap or eating a bag of chips (I know this isn’t just me). I can’t say this without saying that 75% of the time I don’t abide by these rules. I make myself feel like shit all the time, then I flip on Animal Crossing and I forget what I was worried about to begin with. 

My problem was/is not having a routine. You probably feel that way too. Eating all the time because your meals aren’t structured. Or forgetting to eat, next thing you know it’s 6PM and you’ve only had 2 girl guide cookies and haven’t been outside in two days.

Let me speed up the stay-at-home process for you: 

1) Do not put daily pressure on yourself to be productive.

This doesn’t mean give in to laziness. It means it’s ok to lie on the couch browsing Pinterest for an hour. Balance!!

2) Do not get consumed with all of the negative news

The Ottawa Hospital has something called “My Chart”, where you can access all of your scans and results. I have never ever logged in. 

That’s how I’m able to function. I put severe blinders on. I’m happy to let my health care team tell me what I need to do in exchange for results that will tell me if my cancer is “bigger” or “smaller”. I don’t want detail. When I was newly diagnosed I stayed up until 3AM reading about the life expectancies of breast cancer and had a panic attack. I never googled it again. 

I know this is uncommon, and likely some are thinking how this is negligent, not taking my health into my own hands. I know myself though, and I would get caught in the doom and gloom. I would not be able to separate the overwhelming statistics from leading a good life. 

I’m not saying don’t watch the news. I’m just saying be careful on what you consume. Be mindful of  your mental health. Don’t give in to the person who assures you THEY would never let poisonous chemo into their bodies. They will juice it away! 



Have you tried drinking Alkaline water? (@thecancerpatient)

(Be sure you’re getting your information from legitimate sources (Nancy on Facebook is not a legitimate source) ). 

3) Be mindful when it comes to your diet

Again. Chips. Bagels. Mini donuts. Hot Cheetos. Some of my all time favourite things! 

One time I was staying overnight in the hospital after my last craniotomy and I had slept in chunks of chocolate I had dropped in the bed. The next morning the nurses laughed it off (luckily) knowing it’s was chocolate and not feces. 

In that instant it was okay to binge though - have YOU ever had a craniotomy?! 

Just kidding. You’re allowed to eat snacks. I went overboard for a while thinking all bets were off though when I started staying at home. You pay for it later. With lack of exercise that you normally have, try to adjust for it. Some days are for sour cream and onion chips, some days are for smoothies and long walks (to the end of the driveway). 

4) Get out of bed

This can be synonymous with stop mindlessly scrolling. Stop having anxiety naps. Have the will to get up, get dressed. It may feel like a novelty to video chat without wearing pants, but you still need to prioritize your feeling of self worth. 

I have gone days without looking in a mirror or having a shower. There’s been plenty of days where Jeff has gotten home at 5 and I’m in bed, not having turned any lights on. 

I use the ‘excuse’ that I have cancer (or, for you, quarantining) a lot. That’s fair. We are all going through an unprecedented, weird-ass time. I will tell you though (and my future self in this position) that getting up, showering and taking care of your basic needs has. to. be. a. priority. 

I have never regretted getting up and going. 

 5) Talk to your family, often. 

I talk to my parents and sister every day. 

I have my immediate family. My aunt, my grandmothers, my best friends. I have online friends, work friends, book friends - all those people I now consider my family. They’re always checking in on me. It’s important to reach out to them as well. Especially when you don’t want to. (Talking can mean texting too! I don’t talk to anyone other then Mavvy most days, but I feel just as close to everyone!)

You’ll likely lose touch with some people as well under this isolation. That’s ok. They were just convenient acquaintances anyways.

And an extra!!!!*

Take your medication at the same time each day. 

Your routine is disrupted. You’re used to taking it in the morning at 7AM, on your way to work.

Your routine is disturbed. You’re used to taking it at 9:30PM, but now you’re up past one and you’ve forgotten it altogether.

Tomorrow is a bad day. You can’t wake up. The world is dreary. You skip breakfast to fall back asleep. You get up to go to the washroom and feel guilt that your dog hasn’t been out. You can’t make the effort, though. You just feel so down. You skip your morning medication because you’re out of it. Did you eat dinner? You have less energy because of the lack of food.

Sound familiar?

This was basically two years of my life. It is a never ending circle. You lose track of what day it is. 

Just trust me. You don’t want to go through this. Do the right thing. Take your meds on time. 

* This won’t apply to everyone, but if it does: this is my most important piece of advice. 


In the end, I’m not going to tell you that I am the perfect quarantine-er. It felt icky to write things for you to aspire to when I knew them not to be true myself. 

I think the biggest takeaway is treat your mental health the exact same as your physical health. At a time when it’s so easy to get lost in your own head - reach out to loved ones, be mindful of your eating, force yourself get out of bed, don’t worry so much about your productivity (chase what makes you happy instead!), and turn off CNN. 

Dare I say it?

We’re... all.. in this.. together!

xx

Sam

2.23.2020

“I Was Diagnosed With Breast Cancer at 24 - Here’s What It Taught Me”




Sarah Maxey

Back in 2014, I was originally diagnosed with Stage 3 Breast Cancer. It was shocking. I left my job immediately; going on to do six rounds of chemotherapy, a mastectomy, and a full month of radiation (with my mom! Remember when she was diagnosed with cancer right after me? Sometimes I feel like it wasn’t acknowledged enough because I was the priority).

During this time, I started my blog. Through writing I found a true way to express myself. I found something to work on, giving me purpose. It helped me sort out, record and remember my feelings. Mostly, though, I was able to connect with you guys. 

This February marks my fourth year with Metastatic Breast Cancer and this past November marked FIVE years since being diagnosed with cancer. My life has completely changed, so when I re-read the words I had written below, I smiled and nodded, tearing up at how innocent and unknowing I was about the future. I feel like 5 years later, they still ring true.

I read this now and I feel like I want to hold her hand. To stop anything from popping her bubble of a cancer-free life. That the view from those rose coloured glasses would come true. I yearn to be this naive again, but it hurts to think that way. I don’t know her anymore. So instead I’ll leave it here. 

“I was diagnosed with breast cancer at 24 - here’s what it taught me”


Originally published on Hello Giggles July 14th, 2015. 


When I was 23, I had a couple of things on my mind. How I was going to stop my face from breaking out? Wasn’t that supposed to stop after I left my teens? Could I somehow swing going out for drinks when I worked at 5 a.m. the next morning. 

What I wasn’t thinking about was the small, hard lump I’d found in my breast late July 2014. I also wasn’t thinking about renewing my health card or going for a checkup at my family doc. I’m young and healthy. Drinking Starbucks a few times a day is healthy… right

By the time October rolled around that small lump had turned into a large, rock hard one and I was getting nervous. I took the leap and made a doctors appointment. My family doctor assured me: At your age, it’s likely just a cyst! Luckily, she was cautious enough to book me in for an ultrasound. When the imaging came back, I was rushed in for a biopsy (ouch). When they called me to tell me they would like me to come in on November 18, 2014 to discuss my results, I was too shy to say… November 18?! That’s my 24th birthday!

I had pancakes for birthday breakfast and told my boss at work that I was having some testing done but it was likely nothing to worry about. I remember thinking: OK, even if they did find something, I’ll take a few weeks off work, have it removed, be back for the Christmas rush. No biggie!

My mom, boyfriend and I went to the hospital where my surgeon told me the big news: Sam, it came back as a cancer. The rest of the appointment was a bit of a blur, but I remember hearing some scattered terms: chemo, losing my hair before Christmas, leaving my job immediately, surgery and radiation. I was given a letter stating that it would take a full year to beat this thing… so my battle with stage 3 breast cancer would begin on my 24th birthday and end on my 25th

I’ll spare you all of the details. Chemo sucks. It isn’t as bad as it’s made out to be in Stepmom (for me: very little puking, tremendous weight gain). Surgery, in my case, was a single mastectomy (no, they don’t let you keep your nipple). Radiation is exhausting and the open wounds and burns aren’t easy to deal with.

No one can prepare you for the fear and loneliness that accompanies a cancer diagnosis. Your friends and family won’t understand what you’re going through but they’re going to try really, really hard. You’ll start to see everyone around you get purple circles around their eyes and you realize that you aren’t the only one fighting this battle. Everyone will be strong in front of you but when the door is closed, everyone starts to fall apart.

I’m lucky. My cancer was caught at stage 3: it had spread from my breast to my lymph nodes but it had not gone any further then that. Had I waited any longer, my diagnosis could have been much, much different. My genes were tested and my results came back negative.

I finished my radiation a week ago, and I’ve had some time to reflect. Here is what facing breast cancer at 24 has taught me.



People are really good

It’s very easy to believe that our world is full of gun-slinging, blood-thirsty villains. But when you get cancer, your small town will rally for you. I wasn’t in a good place when I was diagnosed: I didn’t have health benefits and I definitely didn’t have any money. There were bottle drives, fundraisers, charity hockey tournaments in my name and even a full page in our local newspaper. Family, friends, friends of friends, strangers, colleagues, schoolmates: everyone started sending me their well wishes. People want to help in a time of need. People are good.



Hopes and dreams are nothing without your health

I love to work. For a while, it was kind of my thing. I worked a lot: 50, sometimes 60 hours a week for the last few years. I chalked it up to good experience, getting ahead. When I was diagnosed with cancer, I realized that I was very sick. And no, I don’t mean with cancer. My mental health had suffered, my skin was breaking out, my weight was on the rise and I was tired, unable to think straight. I had not taken any time for myself in years and it all caught up to me at once. Don’t wait for something like cancer to make you take a time out. Without your health, you can’t achieve your hopes and dreams.



Physical appearances just don’t matter that much

I am a girly girl. I love nail polish and shiny things. When I went in for my surgery, they changed me into a blue robe. I wasn’t allowed any makeup, nail polish, jewelry, or even a hat. I looked at myself in the mirror and saw me for the first time: bald, pale, and not looking very Sam-esque. But… I still felt the same on the inside. I still knew I was in there, the same old me. My outer appearance was shockingly different but I knew that it didn’t matter. And you know what? My new appearance made me more relatable. People are talking to me because they are interested in what I have to say, what I think. Since I decided to focus less on the outside and more on the inside, I have made more fulfilling relationships, I have been able to focus on what makes me feel full and happy at the end of the day. Plus, I’ve saved a ton of money on hair product while I’m at it. Hobbies are fun.



Make time to do what you love

If you don’t know what you love (which is where I found myself on a cold afternoon when a reporter asked me, so what do you like to do in your spare time?) then just try everything. This winter I read a pile of books, I coloured in colouring books, I started weaving, I learned to knit, I learned to cook, I scrapbooked and art journal-ed… the list goes on. It took cancer (and a year off) for me to explore hobbies, but the creative freedom, expression and sense of accomplishment you feel when you complete something as small as a colouring book page is incredible. Make time for yourself, whether it’s a bubble bath, a book club or 5 minutes to meditate in the elevator.



Have faith in something

I don’t care what you believe in, but you have to believe in something. One night, when I was going to bed, I was crying so hard I couldn’t stop. I kept asking “Why me?” Suddenly, I abruptly stopped crying and in my head there was a voice that told me “Because you are strong enough to deal with this.”

I have repeated this to myself ever since. I don’t know who, what or why this happened but I have had faith ever since. Little, strange interventions like this happened throughout my treatments. I always did my best to approach my situation with a positive attitude. I went in to my chemo appointments with all my lucky charms: prayer beads, lucky bracelets, healing stones and the socks that I wore when I got the job I love. I’m not an overly religious person, but my best advice to you is this: You have a choice every single morning when you wake up. Stay positive. Surround yourself with only the things that will lift you up.
Like yours, my story is longer and more complicated then I can fit into an article. But here’s what I want to leave you with: Cancer can happen to you. It happened to me. I’m just a girl. Cancer can happen at any age, on any day, in any situation. You are not exempt from cancer, or for any other potentially scary thing in the world. But this isn’t something to fear. It’s something that can motivate you. Be proactive, and appreciate what you have, whatever stage you’re in.


Samantha Price is a 24 year old business graduate who works in visual merchandising. Outside of her work, she has a handsome boyfriend and two sweet kitties (Oatmeal & Pancakes). She spends her quiet time reading (blogs, books, magazines, cereal boxes), pinning, scrapbooking, and watching Netflix. 


To leave on a high note, here’s what we’ve been up to this week:




 I’m off to enjoy some beautiful February weather (we don’t usually get 5 degree weather in our Canadian winter!)

xo

Sam

1.01.2020

2019: The Times They Are a-Changin



2020



2019 was a strange year. If my screen time did a year in review, I almost certainly would have spent a large chunk of it on my phone. Now - I don’t hate that. I read and listen to audiobooks on my iPad, message friends all day when I’m alone and the only person that hears my voice is Mavvy. I call my parents and my sister nearly every day. I’ve gathered a ton of inspiration and jotted down notes of things I want to complete but didn’t start. This year I want to start.

Before I tell you all about my hopeful plans for 2020, I thought I would do a 2019 recap. I can barely remember what I did in the last week anymore, so this year has been a blur. Recapping a decade?! Trust me, I was going to try but I don’t need that kind of anxiety in my life!

After saying to friends “All I know is that in 2019 I did nothing” (ha), I was reminded that the year wasn’t bad at all.  

                                      
2020 Mood  

Life

I went on a trip in February, saw more then a few shows, celebrated weddings and in August, I started brainstorming my ideas for what was going to be my new fundraiser; Turning the Page on Cancer. 

It was my purpose to get out of bed. I woke up to an alarm, eager to get started. It ended up being overwhelming, sometimes stressful, so much fun and reminded me why in my life, I have always kept busy. Although this time, I still watched Netflix and spent time with Jeff. No workaholic tendencies here. Balance. A huge achievement for me. 

Looking back, I remember after the fundraiser I didn’t feel the gratification. I felt my donation to the Canadian Cancer Society was BIG to me, but would be a small amount to them. On reflection, I realized that while I desperately wanted to work towards a cure for Metastatic Breast Cancer, I started feeling that what I was doing wasn’t going to make a difference. You know the - “one man can’t change the world” quote? This fundraiser was more then that though. It was seeing all of my friends, family and acquaintances (even strangers!) from every corner of my life come together. From book donations (my place became a sea of book boxes!), to great events with everyone generously donating their time to volunteer and join my team, raising funds for a cause that means so much to me, and in turn, means so much to them. We raised over $20 000 dollars after I set my original goal for $5000. This is something to be proud of and not only will it help make a difference, we spoke to so many and educated them on Stage IV. Next year I hope to make it bigger and better, start earlier. For now though, I’m still coasting and taking a break.


                       

                             
2020 - I’d like to stop doing this

Cancer

I started the year on a new Zymeworks trial. I ended up failing the drug in but I was grateful that it granted me more time. I spent a lot of this time overly anxious as communication on a trial (so I thought) was sparse and I regularly felt I was a number, not a person. 


In March I started Tykerb and Xeloda, both take home chemo drugs that come in pill form. They treated me terribly in the beginning, until I found the right dose. I travelled with a barf bag everywhere I went and if we weren’t close enough to a bathroom - I wasn’t going! I stayed on these drugs until November. By the end the sight of them made me nauseous. Even though I had figured out the right dose, the side effects less severe over time, I felt like my life revolved around taking pills 3 times a day. I was getting sick most mornings and I was so tired (although now I wonder, was I tired or was it anxiety and a hint of depression?). I would sleep in late and take the doses at different times each day. I lost my sense of taste and smell so food wasn’t interesting to me, nor a priority. I would take the drugs on an empty stomach, trying to cram them all into my increasingly shorter days. The day I learned I had failed this drug, I was devastated (this was my fault. I begged to try again. This time I wouldn’t take my life for granted). In all honesty though, I felt a sense of relief. I didn’t know what options I had anymore, but I knew I couldn’t continue on this drug. 


In May I fell and from that learned that a lesion in my brain was acting up. I went on steroids to try and shrink the necrosis (dead cells that have been zapped from radiation, taking up space. Equally as dangerous as an actual tumour) and when it didn’t, I had my second craniotomy in June. Brain surgery - and I was awake the whole time! No anesthesia. I will tell you, it wasn’t scary at all and since I wasn’t lucid what was a 6 hour surgery felt like minutes! I was out of the hospital within a day. Isn’t that crazy? 

In December I started SYD985, another trial. It came at a time when I was sure I was out of options and (so far) it has been kind to me. I will take the weekly appointments across the city any day. It’s showing promise in other patients which leaves me excited. I had my second round on December 23rd and I said to my Mom earlier that day - I need caffeine pills, this holiday is leaving me EXHAUSTED. Turns out, there was a reason for that. My blood (hemoglobin for cancer nerds) had dropped to 79, and I needed a blood transfusion. They couldn’t fit me in before Christmas and I mistakenly sipped a drink (which my Onc said not to.. Him: “Do cocaine instead!” Me: “I already do enough drugs”) and fell asleep before dinner.

I got it the transfusion on Friday and feel more energetic. I have a couple mouth sores making it hard to eat and sensitive gums! My eyes are dry and a bit bloodshot (which gets worse) so I’m skipping eye makeup for the most part. We’ll see if I feel like ruining the first bit of 2020 risking it for tonight!! 

Books

This year, I read 35 books. It was the year I started becoming really into audio books. I re-read Agatha Christie’s classic “And Then There Were None”, incredible fiction like “Normal People” and “The Tattooist of Aushwitz”, and some thrillers like “The Silent Patient” and “My Lovely Wife”. For me, though, it was a year for non fiction; eye opening pieces like “Radium Girls” and “Five Days at Memorial” to Jonathan and Tan’s books (from Queer Eye!). 

That being said, my favorites that I read this year were...



Becoming - Michelle Obama

Daisy Jones and The Six - Taylor Jenkins Reid 

Dear Girls - Ali Wong

Know My Name - Chanel Miller 

I listened to Becoming and Dear Girls, they were read by Michelle and Ali themselves. It gives the book so much personality and context this way. 

I also listened to Daisy Jones. Narrated by all the different characters made it unique, however friends that have read it give no less then 5 stars either. 

Lastly, Know My Name is written by Chanel Miller, the girl found in the center of the Brock Miller case. This is a book that needs to be read so you can highlight quotes and re-read sections over and over. 

Music

This wasn’t a great year for music. Just being honest. I discovered a love for 70’s music and listened to a lot of old favorites. This was what I was most excited about released in 2019:



In case any of you were wondering where Jeff’s list was, he said overall in 2019 their weren’t any albums he loved but I suspect it has more to do with prioritizing laying on the couch watching Netflix :).

This is where it gets tricky. Yesterday I chose to make a best of the decade playlist (*clown emoji*). I then thought I should have a pop based playlist and an alt/indie playlist. In the end I mashed it all together and in fear of getting judged, I made it private and chose not to post. Here we are, though, and I’m unashamed to tell you my decade was ruled by Justin Timberlake and Lady Gaga (Fame Monster). Yes I know it was released in November 2009 but it defined and ruled 2010, so it’s included. I know I am the only person who still likes Maroon 5 as well. This is my blog and my playlist though!!

I also made the hard decision of Best Song of the Decade and Best Album. In my opinion. OPINION. Okay?!

BEST SONG

“God is a Woman” - Ariana Grande. This song embodies what this decade was all about - the emergence of GIRL POWER. It’s an anthem. It slays when it comes to aesthetic. I will never get sick of it. Also, can we remember this performance please?


BEST ALBUM

Golden Hour - Kacey Musgraves

Her humble upbringing infused in all her music makes Kacey relatable. She’s hilarious, my personal style icon, throws around swear words and won’t be defined musically (originally Golden Hour wouldn’t be played under Pop or Country). Seeing her live, in an arena or small venue, is always intimate, her band is just as great as her and her personality oozes. I heard Follow Your Arrow for the first time when something clicked. Golden Hour is a traditional more “grown-up” version of the same message. One we need to bring into 2020. Accept everyone as they are. Give love. Be open with your feelings.




Oh, what a world, I don’t want to leave, there’s all kinds of magic, it’s hard to believe 


Ivy and Channel Orange (Frank Ocean) Body Talk (Robyn), Bahamas (Earthtones), Red (Taylor Swift), Anti (Rihanna), Born To Die (Lana Del Ray) and the 20/20 Experience (Justin Timberlake) were all contenders too!


Goodbye to the 10’s

I made a few personal resolutions I’m going to try and stick to:



1 - Set a bed time. Not a get in bed time and go on my phone and listen to my book. A time to actually sleep. I’m always up until the crack of dawn because I have “nothing to do tomorrow”.

2 - Get up earlier. Right now I don’t set an alarm. I usually sleep late into the day after going to bed late. I used to use the excuse that I was a night owl. I would be in my nightie when Jeff would come home from work and I want us to spend more quality time together. I want my days to be filled purposefully



3 - Get (some sort) of exercise. I am used to and accepting of the fact that I have a wardrobe for being a M, L, and XL. This isn’t about weight. It’s when I go to bed I still have energy. My legs get restless. I want to wake up and do some form of (safe, modified) exercise (auto corrected to excruciating, how appropriate). I’m hoping this will also encourage me to eat breakfast... something I don’t get up in time for *facepalm*.

4 - Change all the art of my walls. I need something new to look at. I have a big gallery wall, but since we aren’t able to paint, this feels like the biggest way to make a big impact.


I can’t bring myself to do a timeline of my decade. It was challenging. Even before cancer when I had normal problems.  While I’m “happy and sad at the same time” (get that Kacey reference?!), I haven’t come to terms with my diagnosis yet. I find it cyclical: learning- acceptance - relearning. I hope I see all 2020 has in store for me and find some peace.





Happy New Year xx


PS - A profile picture is supposed to go into the pink square on the right. I wrote a new about me but haven’t included links yet. I have one episode of You left and our Chinese Food is getting cold so... FUTURE SAM PROBLEM! 



11.26.2019

With A Little Help From My Friends



A quick check-in with some updates!

Above is an iPhone dump of photos so you can see what’s been going on the last few months in my world. September & October were dominated by my fundraiser, Turning the Page on Cancer. At first I thought it would be the same as being a team lead at Run for the Cure, but when you factor in the emails, questions, marketing, social media, etc. - it was no joke! For Turning the Page, you would commit to reading for a minimum of 8 hours in October, asking for pledges that would go toward Metastatic Breast Cancer through the Canadian Cancer Society. I originally had this idea when it was clear I could no longer participate in Run for the Cure (I also hate running..). I thought of how much I loved sitting at the library in my pyjamas at school, committing to reading for a full day. I wanted that experience again, a read-a-thon; with prizes for Best Snack, fun events I could totally get behind (Harry Potter trivia?!), and being able to wear my PJ’s and stay inside NOT running but instead roasting in front of my fireplace.

 I ran multiple fundraisers, received hundreds of book donations, connecting with new people and facing a huge amount of support everywhere I went. While my original goal was $5000, we ended up raising $22 218 with a team of 47 people. WOW. From my cracked phone I did all of the social media and events - but really it was thanks to all my family and friends (new & old) for their help, support, book donations; always reminding me why I was making a new trivia the day before the event because I hadn’t saved the original (ouch). I wanted to get the word out about the difference between Stage 1-3 and Stage 4 breast cancer desperately, to share what these women, myself included, were and have had to endure. To each of you that donated, participated, and spread the word - you gave me a hope for the future, gave me steady ground to walk on as I moved forward. 

After the fundraiser, there was a Harry Potter Halloween, a few book clubs, my in-laws buying an RV and taking us to test it out, a birthday trip to Montreal with my family, finding my perfect reading chair, and helping some of my best friends settle in at their new house. 

My new trial is called SYD985. It also gave me hope when I thought there were no options left, and  I’ll always raise my G&T to that. I’ll be starting it on December 4th (if my blood tests allow me too... having some low hemoglobin recently). I remember wondering, before my break in chemo, if I would ever find my motivation again. I was so tired of getting sick every morning, never feeling energetic enough to complete the simplest of tasks: making my bed, letting the dog out. When I found out I was off my last treatment, as devastated as I was, there was a part of me that breathed a sigh of relief. I needed a break. Now that I’ve had this time off I’ve come to a realization

No one gets anywhere by scrolling, they get there by doing 

I was clocking in a screen time of about 7.5 hours a day. Sure I used it for audio books and music, but it mostly came from mindless memes and time spent learning all about the Kourtney/Scott/Sofia drama and creeping influencers I will never meet, creating obscene things that I will never make, selling me things I don’t need. 

I deleted the Facebook and Instagram apps off my phone. I didn’t go on at all for the first week. My screen time was the same - expect now I had finished a book, learned about how an impeachment proceeds, watched a few movies without interruption. The week after my screen time was 2 hours less then it had been the week before. I realized I missed connecting and sharing, so I still go on but through the internet sites (which are frustrating AF, good deterrent), not the apps.

While my thoughts are clear there are the important things I need to look after and prioritize regarding my health and my future. Mainly, however, it has been a privilege to feel somewhat normal again. I know many with this disease never get that. I used to be able to only shop half of Bayshore (a shopping mall in Ottawa), only to come back and do the other half a different day; tired and out of breath. Recently I made it up a big staircase to get to my therapist’s office, something I would usually dread, not even breaking a sweat. I shopped the whole mall with Jeff. Most importantly, I feel like pursuing my hobbies again: decorating, writing, learning, listening. I often become overwhelmed - there is never enough time! 

I’ve made notes on my phone of ideas that come to me now during scans, the middle of the night, in the shower. Story ideas, quotes, images, connecting experiences together and having many a-ha! moments. I sometimes beat myself up about all the time I could have used before, but I always move forward and thank my body and able mind for granting me this time for discovery. 

What I’m Reading:
- Tin Man, Sarah Winman : 5 stars
- Know my Name, Chanel Miller : 5 stars
- Dear Girls, Ali Wong (audio) : 5 stars (very crass and rude but I unashamedly loved it)
- The Chestnut Man, Soren Sviestrup, 4 stars
- The Testaments (not finished), Margaret Atwood:  a fantastic story to accompany Handmaids Tale
- Steal Like an Artist/Show Your Work! : Austin Kleon 

What I’m Listening To:
- Jeff and I have been watching music documentaries and recently are into Woodstock. The 60’s essentials  are ruling my life right now. 
- Snoh Allehgra: “I Want You Around” and “Toronto”
- The Highwomen, The 1975, old Cat Power, new Harry Styles, Beck
- “Like it’s Christmas”: Jonas Brothers (there isn’t such a thing as guilty pleasures ok, I’m just owning it)

What I’m Watching:
- Echo in the Canyon (a music documentary, done by Bob Dylans son), Netflix
- Woodstock: Three Days that Defined a Generation, Netflix
- Lobby Baby: Seth Meyers, Netflix 
- Big Little Lies S2: HBO
- The Challenge: MTV (do I have to remind everyone on my take about guilty pleasures?)
- Bikram - Yogi, Guru, Predator: Netflix
- Unbelievable: Netflix 
- The Crown: Netflix

I got you covered ‘till Christmas, at least. I have enough time to makeup for your lack of it this holiday season, so I really feel like it’s my duty. 

I’ll tell you how my treatment goes, about my hopeful Black Friday glasses purchases, and my vintage Santa collection in my next post.

xx

Sam 







11.01.2019

But I Have So Much Left To Say

Written Nov 1st at 8:30AM

I’m feeling tired so I’m not going to edit this. If this makes me a bad writer - oh well. It’s been deterring me from posting, and it’s better out there then to sit in my drafts. 

I haven’t written anything down in a long time so I’m not sure what’s going to come out next. I’ve been distracted - not busy - over the last few months. Keeping my mind occupied with things that don’t matter much. My concentration isn’t good. When I read a book it will take me two weeks or more to finish. That’s a lot when you have all day, every day. I wrote the trivia and did the graphics for my fundraiser. That was meaningful but again, took me hours that turned into days to complete. It’s only in the last two days I’ve really realized that. I haven’t even fully acknowledged it yet.

When I was able to use my right hand my therapy was to ‘write until I feel better’. The unconscious writing where the words are fluid and time goes by without you noticing, and next thing you’re crying and writing and then you feel a release and you stop. Shut the book and don’t look at the words you wrote. I’ve done this all my life. I’ve never known any other way to cope. 

I am coming to the realization that I’ve been missing that from my life now for a few years. Typing was never the same, although I’ve tried a wide range of journaling apps. I would think faster then I could type. I had to focus on hitting the right letters. I didn’t feel the same gratification. 

All those feelings and thoughts have been sitting on the surface. They’re always ready to pour out. When I have a bad day (or a string of bad days), I’ll call my mom desperate and crying for some relief of carrying around so much. There’s so much there that I can’t put it into words anymore. I just end up saying over and over ‘I just don’t feel good. I’m not right’.

This happened a lot to me over the summer. I’d be with friends and think, I should just go to bed. Everyone will have more fun when they’re not looking after me. I spend hours on my phone mindlessly, just trying to occupy my time. Then Jeff gets home from work; I’m grumpy, I’m mad. I can’t say why, I just am. My anger almost always turns into sadness and the real feelings come tumbling out. It comes out as anger and disappointment. I blame other people because I can’t face the fact that there is no one to blame. I can’t place these feelings on anyone. I have to work through then but I can’t. I stubbornly tell Jeff that I can’t change. I’ve tried, so hard. I don’t know how to.

Over the course of the spring and summer, I was in Xeloda and Tykerb. This chemo was an oral pill I could take at home. I preached the benefits of take home chemo; freeing up a bed and a nurse, less hospital visits, minimal side effects, more free time. Then I actually started taking 30 pills a day (my chemo and all my other pills I take to keep me in check). It was hard. Taking medicine on an empty stomach wad making me get sick nearly every morning. I was sleeping 12 hours, dreading taking more pills. Sticking to a strict schedule wasn’t easy for me. Which is why I usually didn’t.

I never thought I was killing myself until the end of September. By then I was so wrapped up on focusing my time preparing and talking about cancer, I was forgetting to take care of my own cancer. I had lost my sense of smell or taste, so things like chai tea lattes and movie snacks didn’t interest me anymore (we all know that I love my snacks). I would wake up and know that I had a likely percentage of getting sick, so I wouldn’t wake up. I would try and take all these pills in my shortened days (sometimes not getting up until 1 or 2), and I would fail, skip doses. I would hate myself for not being able to stay on track. I would hate myself for wasting my day, not accomplishing anything, feeling pretty worthless. 

The fundraiser I set up on my cracked phone with little knowledge of how this may go turned wildly successful. I would tell myself - you did this. You are using your voice, speaking out, meeting new people, learning new skills. You are doing something worthy. Our final total equaled over $25 000 when I originally set my goal at $5000. My family, friends and compassionate strangers showed up, telling me through their actions that they cared and understood what I was going through. I desperately wanted to share the story of MBC, what myself and others have and will go through. I did that. It didn’t heal me. I never felt proud. I was still angry. I see now in all my posts that I was just translating my sadness, my anger, in a different way. I felt hollow at the end, realizing that I was so lucky, I felt so grateful, I just achieved a major accomplishment . Yet - it didn’t fix me. It didn’t take away my fear and anxiety. 

After the fundraiser I knew I desperately needed some time to reflect on all of this. I didn’t know until I just wrote it out right now that this is what I needed yo think about. I wasn’t granted any time, though. 

In the back of my head I knew that I was putting myself, my health, second. It wasn’t something I wanted to think about. I was riding the high everyday - selling tickets, gathering books, writing posts, running events. This was fun. I didn’t have time to think about anything else.

My last scans were stable, and my doctor had said the pills could be taken “within an hour or two each way” if I forgot. I didn’t admit at the time that I was constantly forgetting (or dreading) taking them; I took his advice and stretched it thin. I never took my pills on time. I would take it at 10AM one day, sleep in and take it at 2PM the next. 

I realize that this sounds like a first world problem. People would trade places with me in a second. I live rent free. I live in Canada, with universal healthcare. For what’s not covered, I have a job with a fantastic health plan. I don’t want or need for much. I had this medication, which overall costs thousands of dollars and I .... wasn’t taking it?

On the Monday after the read-a-thon, I had a visit from a home care worker (I may be messing up her title, I can’t keep everyone that comes in and out of my life straight). She just wanted to touch base. It started with, your cats are so cute! What medications are you on? Then - “ what surgeries have you had?”. I started listing off my long list of scars for her (a mastectomy, my port, throat surgery, broke my arm a few times, two craniotomies...). I mentioned my family doctor had told me already that if it came to it, he would do home visits for me. I was comforted by that, but I opened up the conversation and she felt open to discussing my end of life plan. She wanted to know because ‘things can change any second’, so she could help my family make critical decisions, so she was informed of my wishes. She actually asked me if I had a will, if I’ve thought if I would want a DNR. These thoughts stay tucked away in the back of my mind. I compartmentalize them and don’t let them out. It’s what allows me to move forward and live a good life, keeps me on track, let’s me relax and still have fun. Appreciate others babies and houses and jobs. I can’t let myself think that way. This conversation brought it to the forefront though leaving me to respond with a lot of “uhhhhhs”, “I’m not sure”, “I’ll have to think about that”. I mean, I know I should think about that. I obviously do. Not out loud, though.

This planted a little negative seed in my thoughts and while I didn’t want to upset anyone, I desperately wanted to talk about it. I got mad at Jeff for not asking me more about my visit, throwing mean words around. My nurse visits are usually so routine, there isn’t much to talk about, so I get it. Still, I couldn’t bring it up on my own. I couldn’t speak freely about it. Until now, really. 

With all of this, I was trying to focus on myself and vowed I would wake up and take this medicine properly every day. I made it my priority. Jeff would call me repeatedly to see if I had taken my dose. Within two days my oncologist called: 

“Sam. I got the results of your CT scan. There are two Tumours in your lungs that have grown by half a cm. I believe the chemo you’re on isn’t working. I’m going to refer you to look into clinical trials”. 

My heart stopped. I had no more time to correct my patterns, change my ways. It wasn’t working. I had so many doubts that I was the problem, it WAS working -I just wasn’t taking it properly. My oncologist gently told me that even if I was taking a small dose it would not have grown that much so quickly. I had failed another treatment.

When I was newly diagnosed 5 years ago, I remember him vaguely telling me that we had lots of good options but Xeloda and Tykerb looked promising and something about my last ‘good’ option. The thought kept circling in my head. I failed my last good option.

In the week I waited for my trial appointment I had convinced myself that this was it. It was telling that the home care worker had this conversation with me right before I got this news. You can’t even get into a clinical trial if you have active brain activity, and I hadn’t gotten the results of my MRI yet. My head has been aching, throbbing, I had been throwing up just to relieve the pressure I was feeling. 

I teared up the night before begging God* to give me the grace to take the news, either way. I’ve never believed that you can make a change through praying. It’s genetics, it’s in your DNA, the scan was done weeks ago and you can’t change what is already printed on the paper.

* my therapist and I have spoken about belief regularly. She’s told me I should start looking into what, if anything, speaks to me. I don’t necessarily know who or what I’m talking to - maybe it’s my own conscience, soothing me and giving me positive affirmation. 

I walked into my trial appointment, with a new oncologist. From my last trial, I remember it feeling very impersonal. I didn’t want someone I didn’t know to tell me I was dying with no other options, then leave me to deal with the aftermath. 

To my jaw dropping surprise he came in, excited and smiling. Before we even said hello. He said “Your brain MRI is stable!”. I literally let out a surprised yell and curse word and Jeff and I squeezed each other’s hands so tight. We didn’t have much time before the oncologist excitedly told us that he has a plan, and he thinks it’s going to be a good one. 

I’m still shocked. I’m waiting for all of the appointments that go alongside a trial to flood in. You know when someone says they have a new appreciation for life after a near death experience? I understand now. I never did before. I was always in the mindset that there was another option, that it isn’t my time. When I heard this news I let the idea creep in that this was it. I’m on a break from chemo for 4 weeks and a week in, my headaches and nausea have gonr away. I took a a flight of stairs that have previously been a challenge, and took every step to the top without stopping and losing my breath.  I felt passionate about the possibility of planning for the future again. I feel like this time I have is me-time. I was granted it when I didn’t expect to have any. 

I stopped taking the X&T combo right after my appointment. They need four weeks to flush it out of my system. I start my treatment Nov 27th and I’m elated to have a small break, and have a solid plan for when I get back at it. 

The side affect of my new chemo isn’t nausea or hair loss. It’s extreme eye dryness. I can’t wear my contacts anymore, I doubt I can even wear eye makeup. I’m on the hunt for a perfect pair of glasses (or 5), before I start. I’m taking November to just enjoy my time / it’s my birthday so I’m planning on having MTL road trips, parties and lots of laughs with my family and best friends. 

I didn’t realize how I let this drug rule my life. Beside the pressure I put on myself to take it, I also lost my sense of taste and smell. Little pleasures I always took for granted. Chocolate, red skittles, smelling the fall candles. The things that still keep me happy and give me quality of life, I wasn’t able to enjoy. Those should all come back anytime now. I never thought I would say I’m EXCITED for a new treatment, an IV chemo, but I am. I’ll take my eyeshadow pallette off the Christmas list gladly. 

As for the mental battle, I don’t have an answer. It keeps haunting me and isn’t something I can get a grip on. It’s always there and here to stay, for now. 

When I have more information, I’ll keep you updated. 

xx

Sam

6.27.2019

Acceptance





I was diagnosed with breast cancer 
I could deal with that 

I had to take a years leave from my job?
I could deal with that 

Losing my hair? 
Dealt with that 

The cancer went to my brain
I guess I could deal with that..

Two brain surgeries? 
I dealt with that

Being retired at 26?
I (unhappily) dealt with that

Losing my voice? 
I can (somewhat) deal with that

Losing the use of my right hand?
Devastating. I’m still dealing with that

It’s recommended I use a walker?
I sadly have to deal with that

Staying at home all day?
It’s lonely but I deal with that 

Losing 
motivation
energy 
sleep 

Losing the right to govern my own body?

Losing my sense of pride?

Slowly losing myself? 

I just can’t deal with that. 

4.29.2019

A Loss In The Breast Cancer Community

Just stopping in to say hi. My surgery went better then I can explain - and dont worry, I will! I actually found out this afternoon that my pathology results came back and not only did the scan show that it was perfectly clear (!), it was also radiation necrosis and not tumour. For this I am so grateful. Ready to heal and take the next step - which will be adjusting to my new chemo which will start March 10th.

I just wanted to quickly post that the breast cancer community lost an advocate and wonderful person yesterday. Teva Harrison wrote the novel “In Between Days” - which I heavily reference on my blog and would recommend as the book I can always relate to most, living with Stage IV cancer. Her honesty yet complete positivity would shine from her.

I found out yesterday but couldn’t deal with it. Pure ignorance on my part. I went about my day. I knew I was angry but I buried it until I was ready. Today I can think about it. I feel sad, angry, betrayed. This was my - our - beacon of hope. You hate to admit that heroes are just people too. 

She said she hopes her work lingers in people’s minds - just a little bit - so she can be remembered after she’s gone. 




hi


xox

Sam
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