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

4.17.2019

Another Winter, Another Surgery


Before I left on my trip my brain was swollen. I still begged my doctors to to let me go on a safe trip with good healthcare. She was hesitant and asked me to bring steroids for brain swelling - just in case. I was starting my new at-home chemo pills (Xeloda & Tykerb) when I got home. When I’m scared about something - adjusting to a new treatment, a new dose, recovery, surgeries - I like to do something big.

Jeff and I ended up going to Mexico and *sigh*. Can someone leave me there next time? Drinks, food, sun, books, swimming. Room service, swim out rooms, cheesy beach photo sesh. This time, Jeff and I chose to have no schedules. If we didn’t want to go for breakfast we ordered in. We didn’t rush to the beach at 8AM. We watched movies, took naps, and ate a ton of ice cream. I lucked out. No steroids needed. My brain was behaving! It made my winter bearable. I wasn’t sad or depressed this year. I can’t believe I’m saying that about Winter, it’s been so many years. 










Unfortunately once I came home, I started my new chemotherapy. I was really sick. I was throwing up, my stomach felt like exploding. I couldn’t eat. One day, I woke up in the middle of the night and blacked out: I fell - hard - onto the ground on my broken arm, right side. Jeff ran to me, I had no memory. I was sure my arm was broken. I couldn’t feel my hand and foot. I rushed to emergency only to find out - all along - the swelling in my brain was taking over. They put me on steroids  (what’s sleep? Why am I always angry? I make anal retentive lists for Jeff and he just.. puts up with it. I never, ever say sorry. I am always right!!!). While I have PTSD now when I hear I have to be on them, they’re a necessary evil. I felt better in three days. I can only shuffle on my right foot. I’m painfully slow. At the hospital yesterday, I got asked if I was okay repeatedly. Here I am though, able to move around, even if if I need some help when it gets too steep, putting on my boots and getting into the shower. Snuggles with Mav are always welcomed though - to say we spend a lot of time together is an understatement! 

When I treated my brain, the chemo nausea was gone right away. That’s when I  was able to look at my true side effects and took notice; I lost my sense of smell and taste! My doctor acted like it was not a big side effect in the big picture but.. but. I love to eat!!! This is greatly affecting my quality of life!! 

The stomach and gastro problems are less with a lowered dose of chemo, with some chance of these weird side effects to lessen or disappear. At this point, I’m so confused with my body. Who knows what it’s caused from - my brain? The chemo? Your guess is as good as mine. 

I waited a while after this emergency visit, to let my brain surgeon, chemo oncologist, and brain radiation doctor chat.

This morning, I had an appointment with my brain surgeon.

I love when a doctor is confident and has a plan, so although I’m nervous and scared I’m relieved.

He told me that I was an emergency case. I had a lot of swelling. The good news was, the second he takes it out the cause of the swelling is gone. I should have immediate relief. 

Since it’s an emergency I go in TUESDAY. As in, 5 days from now. He wanted me tomorrow but they’ll be closed for Easter! So happy weekend to me (and please, oh please, let me enjoy my cheesy broccoli without my full taste).

Even though I’m admitted Tuesday, it could take place that day, Wednesday or Thursday. It is based on if anyone with a bigger “emergency” comes in to tend to. For now, I feel ok. I like that I have a timeline and it makes the potential of waiting less frustrating. 

This time I’ll be more prepared. Snacks (although I’m starting to like hospital food *facepalm*), my own pajamas, pillows, toothbrush, downloaded Netflix (did you know it’s banned at the hospital?). 

Side note : THEY GOT ONE OF THOSE AUTOMATIC ICE CREAM MACHINES! Looking for the little silver linings because...

I’m gonna be awake this time. I have a friend that did her whole surgery awake, and she said although it was long they keep you drugged enough that it feels like no time has gone by. My surgeon (whom I love and trust), said that to make sure I don’t lose function and mobility he will let me listen to music, ask me questions, make sure my hands and feet are responsive. So even though it feels daunting - I feel calm. I’m not nervous, which is shocking. Maybe I knew it was coming since my trip, so I had time to think about it. 

When I have the surgery, I’ll stay in the hospital for 3-5 days. 

There’s one thing I should mention. My surgeon was the first person to confirm that my new chemo crosses to the brain. I had heard this, although no one had ever confirmed it. He was really hopeful and wants to do an MRI before I even go in because if it’s shrunk, he doesn’t want do the surgery at all. This is VERY optimistic thinking. I’m making this comment but NOT hopeful. I can say I “completed” six weeks, but in reality I haven’t been able to take a full week without a break. I don’t think I’ve consumed enough to see a difference, working or not. 

Since my trip I got to see Ariana Grande in Montreal (had to save my energy for that one!), but sadly had to miss My Favourite Murder live podcast and a trip to Toronto to see the Dear Evan musical with my sister. The end of Winter and the beginning of Spring has been a challenging, weird season for me.



When you order your fave and it end up being gross AF with your new tastebuds

I should also say - because right now I’m treating it as a future Sam problem - I have two spots in the back of my brain where they’ve already radiated. He said I don’t have much “retail space” left back there so he can’t remove it without doing more damage. So, hopefully.. this next chemo works! There isn’t a lot of options otherwise. One thing at a time though. I’m choosing not to think about it yet. 

Right now I’m passing all this time..

- Binging books. Currently reading “Becoming” by Michelle Obama. 

- TV (duh). Killing Eve, The Voice, MTV, my guilty pleasure - Star. All the good shows, you know?

- Scrapbooking. I realized recently I was thinking a lot about what people wanted from me and it was crippling. My therapist asked me what makes me turn off and forget about the world around me. I love sharing, so I likely will with this hobby,  but I also don’t care if one page takes me four hours. Or if my edges aren’t cut straight. I’m an 80% > 100% girl anyways.  This is my time to listen to music and create something for me. 

I think a lot of the time about what I’ll leave or do for others, and I quickly realized that not only was the pressure stressing me out, that isn’t the point for me. I have all of this unexpected time to use to focus on me - weird questions like why I’m here, why do things happen the way they do... and also why is Adam Levine still on The Voice? 

So having some me time to contemplate is very important. 

Anyways! I hope everyone gets to enjoy their Holidays in their own little way. Whether it’s Beyoncé’s new Netflix doc, working to the bone in retail to make sure others enjoy their day, or a family dinner celebrating at home. Every holiday is special to me now.

Thank you for reading and all of your love in advance! Is it presumptuous of me to say that? Ah well.

See you on the other side!!

Sam



(I have no idea where these are from so if you know.. link me so I can give credit!!)

1.10.2019

The “Best” Of 2018

When asked how my year was, I automatically answer with “awesome!”. I thought about it and what I define as  “awesome” these days is pretty different then I would have 4 years ago! Still, 2018 was good to me. This is my recap:

2018

- 18 Chemo Treatments (Kadcyla)
- 20 Trial Treatments (ZW25)
- 1 Larynscopy Surgery (Throat surgery in human language)
- 3 Broken Arms (in 2 months): 
      1 traumatic experience at the Carleton Place hospital (my first time on Ketamine!)
      1 lie of the year (How much have you had to drink?)
      3 screws that came out of my bone causing it to break again  (“they’re just floating in there!”)
      1 car door (I just opened it and my arm broke!!)
       92 staples (*upside down smile emoji*)
       1 metal rod and 4 metal screws removed
       2 metal plates placed in my arm (bionic woman)

- 4 surgeries this year in total (thank u, next)

- 3 blood transfusions (help people like me out and donate!)
- Bloodwork, scans, doctors appointments (too many to count)

- 5 shows (Harry Styles, John Legend, Les Miserables & JT x 2 .. could’ve been 6 but I left Drake hanging)
- 7/12 book club picks (and multiple viewings of The Bachelor)
- 7 days in Nicaragua (+39 > -20)
-  1 Bachelorette (Harry Potter themed)
- 3 weddings (does late twenties make you a better dancer, or do you just stop caring what people think?)
- 4 birthday parties (6 pairs of kitty ears)
∞ Mozza Sticks (w/ seafood sauce) 

Reflecting on the year, Jeff and I eagerly (better late then never?) made playlists based on 2018’s Best Albums. Let’s just say there’s a little something for everyone.. 

Jeff  “albums are meant to be listened to together” Mitchell :




Sam “don’t judge me” Mitchell:


My favourite books I read this year:

The book that most impacted me this year: 
Call Me By Your Name/Andre Aciman

My fave fictional story of the year: 
The Seven Husbands Of Evelyn Hugo/Taylor Jenkins Reid

The best non-fiction:
Being Mortal: Medicine and What Matters in the End
/Atul Gawande

Saving my favourite for last. My year in pictures!




Entering into this year I was recovering from a craniotomy and the loss of using my right hand. A lot of the time I thought - if this is my time, I’m happy. Then a year went by, and not only did I learn to work with what I have and listened to my body about how I feel (no more acidic foods and no more holding babies.. my heart breaks for both) I am feeling good and in a much better place then the start of this year. 

On January 7th I had a trial PET scan because I had swelling in my brain. This scan will tell the doctors what’s going on in there - growing tumour or dead tissue from it being previously radiated. Either way it will need to be treated and there isn’t really a ‘great’ option. Welcome 2019, I’m ready to face whatever you bring my way. 

xx

Sam

EDIT*

This post consumed me for a lot of last week. I posted it, left it up for a few hours, then deleted it. I had this positive outlook on this year, but shortly after posting I saw on Facebook that two of my breast cancer friends had chosen to end their treatments. This was such a brave decision, but it gave me such mixed feelings. I felt I couldn’t post anything happy or positive after that. The truth is - this doesn’t get any better for us. We have as many good moments as we can, but inevitably it will get worse. There is no good outcome I have to look forward to. I’m not going to get better. In reality,  I’m not ready to be sick again in 2019. My view on this year dramatically changed.

Last night I wrote a letter to someone I know about his end of life decision. I thought it would break me, but instead I thought about it long and hard. What is really important when it comes to the end?

Every time I think I’ve come to peace with “why” this is happening to me, I feel differently and have to try and relearn it all over again. I’ve always come to the same conclusion though; we are loved, we matter and we are the lucky ones. We get to see our friends, family and community show us an outpouring of support. Getting to see these moments before we ultimately move on is amazing and important, being able to experience this gives us a great sense of self and answers all of the questions. I often ask, “Why am I here?”. Often, I feel I haven’t done enough that is making an impact, that’s “worth” it. I think the real meaning is experiencing what we love, connecting with everyone we love, and loving our bodies for enduring so much and allowing us to do the first two things. 

So here I am posting this blog because I’m still allowing myself to be ‘me’; I am my own person first, not my diagnosis. I’m trying not to get trapped in dark thoughts, reminding myself that to have hope isn’t a bad or unrealistic feeling. I’ll relearn this over and over, as I said in my letter above, but today I can only hope for a better day and continue to seek out strength so that I’m able to keep going.

12.10.2018

December - A Legendary Christmas


I said after the summer I was happy, that I was ready now, I got my time in and I could take what life throws at me (which makes me LOL in retrospect because I did break my arm 3 times and still considered myself very happy).

I agreed to go on a clinical trial (ZW25) that only had less then a hundred participants in the world (talk about taking a chance), because if I could, I wanted to keep my hair. I didn’t want harsh chemo side effects. I was ready to feel more normal, less sick, blah blah. 

My first treatment came and went and as I waited for side effects, the days passed and the side effects never came. A few treatments later I was still #blessed enough to have nothing more then an acnelike rash on the side of my face and back of my head, both which were easily manageable. 

My first set of scans showed my body and brain stable and that was a win! This was in October or so. 

I had another round of 6 treatments and I was able to not only attend - but have fun - at two of my friends weddings, a Montreal bachelorette, my birthday, and a Christmas Party. 

On top of this, a little birdie told me that this trial was in such demand and so effective that doctors at the General were taking notice and investing. 

I won’t lie. I let my usually sensible guard down and thought, maybe this will become a chronic disease for me. Maybe this will give me more time. Maybe I can keep living this way!!! Maybe I’ll see sand, oceans and holidays again! 

I had my scans two weeks ago (if you’re opposed to drinking the Barium dye then you’re a baby) (joking) (not really time to stay quiet about it and SAVE YOUR LIFE). I got my results the week after and I didn’t even tell anyone! I was really confident. Turns out I should’ve been more prepared, because although they weren’t the worst, they weren’t the best either. 

My scans from the neck down don’t show any new spots. My liver is still clear. Three spots have grown a few mm though which is considered progression. They’re going to scan again in one cycle (six weeks) and if it continues to look worse they pull me off of the trial. 

Ugh. 

Future Sam problem. 

As for my delicate brain, it isn’t as important in the trial but it’s still VERY important to me. This week I’m supposed to have an MRI, and although optimistic, I was confident about my last scan too. We’ll see!

Hopefully we can have a very Merry Christmas; with cocktail dresses, gin, and lots of good food. I want my biggest choice to be whether to eat all the breakfast casserole, shortbreads, or pistachios. Let’s be honest though - I’ll eat all three. 

With my ‘positive thinking’ I planned ahead - something I don’t always love to do, admittedly - but I’m going to see Kacey Musgraves in January, My Favorite Murder (podcast) in February and in March... seeing Ariana Grande and Dear Evan (musical!!).

Throw in some hot trips and I know I am spoiled and it is fully appreciated on this side. I don’t take anything for granted. We are able to live this way when many others aren’t, but in turn, we’ve had to make major sacrifices too. Whenever I think about a future career, family, house... I know that isn’t in the cards for me. 


Feeling fancy at John Legend 

Another post will have to come about my experience with the Do It For The Love foundation, my never ending fight against take home cancer drugs (politics let me take out my angry side... what can I say?), trying out new unproven brain treatments (think cannabis and not turmeric...)  and a little bit more of a life update. 



& if you have a special remedy for sleeping. Hit me up. #4everawake


xox
Sam 


The (un)Organized Mind + Blog design by labinastudio.