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Thursday, January 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:


- 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. 




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.

Monday, December 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. 


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


Monday, August 6, 2018

The (real) Reason I Keep Breaking My Arm - Narcotics!!

I feel like I used to tell myself “I’m not that bad” but I always knew there was going to be a “...yet” at the end of the sentence. First it was “Well I’m thankful it’s not in my brain”, “I’m thankful this chemo isn’t too hard on me”, “I’m grateful that my bones are proving to be stable”. Every time I disprove one of these ideas I scare myself. It’s not one thing that’s happening but it seems to be coming for me all at once. Individually I could handle and treat this fine... when so many things happen at once, I worry. 

This summer has been both fun and difficult, stressful and sad. I’ve lost a lot of friends, aquaintances and family to this disease. I’ve had to think about the big picture while looking at what choices I make in the little picture will affect that. These decisions aren’t light, they torture me, and I can get advice but ultimately the decision is mine. I’ve had to become comfortable with what I can accept as a good quality of life - which I keep having to lower my standards on.

At the end of June, I slipped at a wedding (Nelly came on so obviously I had to jump up) and my humerus broke (upper arm). Before all of this, I had been on bone strengthening drugs and I wasn’t told it was this bad. I went to the emergency dept in Carleton Place and they gave me a half cast (while also cutting an arm off my beautiful dress) (the one I was like “I love this I’ll finally spend money on something good quality so I can wear it again”)(not).

Stonefield wedding - beautiful &so much fun.

They gave me Ketamine in the CP hospital which was an experience all on it’s own (“Oh, I get it.. none of this was real” as I was trying to convince everyone this was an alternate universe. My nurse holding my hand as I was scream crying.. #horrormoviestuff) I demanded pain medication even when it had only been 15 minutes from my last dose. I had to get my x-rays done twice - which was already unbearable having to manipulate the broken bone - only to have no access to them when I got transferred to the General, where they  had to them all over again.

Top - Arm Jewelery / Agony Face
Bottom - broken/with surgery and metal rod 

The paramedics left me alone in a back room and my family had to come find me. I was crying again, nothing with me, nothing around me, no nurse call bell. A resident came over to let me know that there was “other people ahead of me” and I would have to wait. My mom told me I burst out yelling  “OH YEAH? DO THEY ALL HAVE CANCER TOO?”. She walked away, flustered. Oopsies!

I ended up having  a surgery at the hospital but first,  I demanded handheld fans (thanks Aunt Lorraine & Uncle Ric!). I spent a week afterwards in the hospital, sent home with a sling but told I could take it off.., So I went on to bluesfest and cottaging and swimming etc., wearing my sling but taking it off frequently. They told me to excercise it and get it moving again. 

1 / my staples come out from my first surgery 
2 / jeff and I grossed out 

Jeff and I had our wedding anniversary and it started with a trip to the General. My doctor looking at my first arm scan and exclaimed “Oh no”. Just what you want to hear! They had put in a metal rod and at the bottom two screws kept the bone straight and in place. One of the screws from the surgery had fallen out and was floating around in my arm. 

Foo Fighters / the night I may have lost second screw #noregrets

Leading to my next surgery. Replace both screws and make it straight again. I went in on Tuesday and only had the surgery Friday. I took up a bed doing NOTHING for 5+ days, missed family holidays, and fasted (one day from midnight-9PM) in case I were going in for a surgery. I then missed a weekend away to heal that we had been planning since February. 

They sent me home saying to be “extra careful” this time, and if I needed another surgery (in my head I was thinking hell no), it was going to be invasive - they would put more metal in my arm to keep it from breaking further. I was adamant that afterwards my sling was always on. Funny, though, because they told me with the metal rod, I would never break it again...

This Thursday, I went to an appointment to talk about arm radiation - to help with pain and to strengthen my bones. 

As I left that appointment and opened the car door, I broke my arm above my elbow. Holding my arm, we rushed to the emergency room at the General again. They wrapped up may arm and gave me what I think may be the ugliest sling of all time - attached to my neck, a piece of fabric hanging down and holding on to what seems like a felt loop to put my arm im

I miss my old sling because it doubled as an iPhone holder as well..

At this time I was in shock they weren’t going to do anything to fix it - other then giving me heavy duty painkillers (which made me barf in the hospital waiting room) and the sling, which feels less stable then my last. Although, thinking through the situations  a few days later, I get it. They don’t want to make me go through a big surgery if I don’t have to. They want it to heal on its own. I want that too. Yet when I hear my bones constantly clicking together, part of me just wants the surgery now to get it out of the way once and for all. 

While this was all happening, I was told my chemo had failed. They gave me options and I got into a clinical trial (ZW125). My arm really distracted me from focusing on a treatment that ultimately had the chance to really help my quality of life, or lead me into some really bad places. My liver is clear now, my cancer isn’t progressing fast, but this chemo has only been tried by 60 people in the world. It’s in its first phase of trials. There’s little evidence that it works as of yet, but it’s being done out of the General, my oncologist (whom I really trust) recommended I do it, and there is more hope for my family - this could be my miracle drug. Who really knows?  I’ll still have a proven drug if this fails - although it may be a bit more harsh.

Clinical trials are very specific about what you do or take when you’re on them. I’ve had to test my blood, check my heart, have a lung biopsy and an impending brain MRI. If my brain is “stable” meaning I can have the same tumours as before, they just can’t be bigger. That’s the last piece for qualifying completely.

If I had this major surgery, I’d have to put off the trial or go on another drug. I will have been off chemo for a long time when/if I can finally receive this new drug, and that makes me uncomfortable. I don’t want to push it back anymore.

I’ve had a lot going on in my personal life, on top of letting your husband become a caregiver (thank you, Jeff, for learning how to straighten hair, use bobby pins, and shave my legs) which is such a loss of privacy but I’ve learned creates an incredible amount of intimacy. 

Jeff’s grandpa passed on July 27th, after having bladder cancer spread and was in a lot of pain near the end. It was sad - and scary - because I’ve never seen anyone in that state before. My heart lurched into my throat, because just a few weekends ago, I was talking to him. It was scary, knowing that I’ll be the same.  That makes me feel selfish, but was one of the emotions I felt at the time. . 

Roger looked like Don Draper from Mad Men; so dapper, well dressed, charisma, a business man that I know Jeff looked up to. A beautiful life and love story, he had such amazing kids that have all birthed amazing grandkids, one now being my husband. Cousins that were always welcome and warm  to me ane nieces and nephews that show so much kindness and gratitude. I am so proud of how they handled the chaotic last few weeks. Grandpa always said “who’s Marilyn Monroe over there!” when he talked about me and touched my real hair and asked me real questions that no one else would really understand. 

This was the only part of the post I cried while writing, and I always remember how lucky I am to have been accepted and loved by this family. 

I promise I’ll do better at updates. I’ll know a lot more by the end of the weekend. 



Monday, May 7, 2018

That Time I Went On An (un-edited) Rant

I get upset by things because I’m a human - not always because of the cancer. I haven’t talked a lot about that. I’ve talked about being sad, but not angry. Upset. I normally don’t post about these feelings - I let them sit, simmer - sleep on it, or talk to Jeff, my friends or my family about it. I didn’t think they were “appropriate” to write down here. 

Then I thought.. do I really care?

In honouring the transparency I’ve always shared since I was diagnosed in 2014, I thought about it today and decided - hurt feelings or not - I’m going to share what I’m feeling, just as I always have. This is tough because I never want to hurt anyone’s feelings, but in not writing it down, I feel even worse.

I’ve been having all these thoughts weighing on me and I felt I needed somewhere to dump them. So it may seem sporadic, un-organized, or emotionally charged. That’s because it is.

My trip to Nicaragua was amazing without a doubt. I have so many great things I experienced, learned, and am so grateful for. That’s for another post though. In this post, I’m going to say, Nicaragua really highlighted to me how disabled I feel. I am very slow, and my right foot is almost robotic - not allowing me very much balance. Stairs, mountains, hills - all things I try and avoid. I grip to Jeff most of the time because I’m so scared of falling (and rightfully so, because I’ve fallen quite a bit). I had to spend time looking at the ground, wondering where I’m going to step next instead of seeing the beautiful sites and scenery. I have an amazing husband and friends that reassure me all the time that they want to wait for me. That I’m not a burden to them. When they wait for me at the top of the stairs, or get me things because it’s harder for me to get up once I’m sitting down. I love them for that. Deep down, though, my lack of independence has been so hard on me. I’m embarrassed to let others help me. I’m ashamed I can’t do some things on my own. I liked walking around, shopping or attending concerts by myself. I was sick, but I still felt like me. 

As well as my right foot, I lost the use of my right hand. Losing the ability to use my right hand (which was my dominant) has changed everything for me. I can’t write - which I’m reminded of whenever I sign a receipt, am asked to fill out a medical form, sign my passport or write in a birthday card. I used to journal a lot (my own  private escape) which I can’t do anymore either. I can’t do most crafts (scrapbooking, colouring, etc). I can’t paint my own nails, I taught myself to use my left hand to put on makeup or dry my hair, but eyeliner? That’s been retired from my routine. Putting sheets back on the bed, trying to use a razor, zipping up a jacket. 

Have I said “I can’t” enough yet? 

I am complaining here, and I hate it. I should be feeling lucky that I’m still able to have fun, go out and do things, like go on trips. Sometimes I don’t want to feel lucky though. Why should I feel lucky? Sometimes I want to scream (instead I normally get grumpy and cry - sorry Jeff). I have Stage IV breast cancer - I don’t have the option to have children, have a fulfilling career, or grow older - and I should feel lucky?

I am also starting to have a love/hate relationship with social media. I want to post on there, but I feel a judgement pass sometimes. You’re having a great life. You’re social! Energetic. Going on trips, having drinks! Of course I’m not going to post that some days I stay in bed until 3. I’m not going to post all the pills I take. The wicked side effects I get (I’ve thrown up so much that I will ask Jeff to get the dog food to smell - speeds up the process because that makes me sick right away!). Social media, for those that are sick or not, is only showing one side of us. It is not transparent.

I heard someone say “I could never do all of that when I was sick”. The way it was said felt judgemental, like I should be taking better care of myself. It made me doubt what I was (happily) doing. 

There are other women I follow that have advanced cancer, like myself. I always find such pleasure and comfort in being able to connect with them, share their experiences, keep in touch. Sometimes, though, I find cancer pages with misconceptions and I get very mad. I already find that there is a big gap in understanding what Stage IV breast cancer is. Recently, I felt like I had to say something to someone that had a lot of influence and followers. In turn I was blocked and left feeling hurt, wishing I hadn’t said anything at all. My pure intentions came out the wrong way - angry, upset. 

Today, I told this story to a group I was in. Instead of support, the laughing afterwards made it feel like a ‘first world problem’. Most people agreed: don’t say anything next time, don’t have that negativity in your life, saying ‘this is why I hate social media’. I felt young. I felt stupid. I felt regret that I even mentioned it, even though it had been something that had been really bothering me. 

There were two other times that I felt judged in a room that was meant to be non-judgemental, because of my young age. I bet they weren’t meaning to hurt me, but I felt sad anyways. 

I’m so desperate to meet others in my shoes that age never mattered. In fact, I was definitely the “most sick” person in attendance! Still I felt like no one could, or wanted, to relate to me. My age felt like a barrier for the first time. 

Then, I thought, maybe it was because I’m no longer bald. Wearing a wig. Puffy from steroids. I found it much easier to claim sick when there was that visual to go along with it.

In reality I shouldn’t have gone, and I know that. I wasn’t ready to face my reality yet and this group made me angry. Usually it happens this way: I’m the one in the wrong but I blame it on others.

I feel so confused with all the trials and alternative therapies I read about. I would like someone to explain to me what I should do next. My family doctor refers me to my oncologist, my oncologist refers me to my phychiatrist, they recommend me to the OICC and they want to charge me $120 just to see a naturopath, to recommend me treatments. Do I stop this treatment and start a new clinical trial? What if I don’t actually get the drug? What if it fails, what if it works? There are unconfirmed studies that cannabis crosses to the brain, but I went for an appointment that left me with $100 of oil that left me feeling so high I couldn’t function. Even then, I learned, that dose was too low to even be used as a treatment! 

I think a lot of patients have the same confusion as I do - it is hard to be your own advocate, do your own research when you’re tired and worn down. These aren’t pleasant things to think about - especially if you’re NOT looking to take control, like me. I never want to know how many tumours I have, details on how things are working, or keep my paperwork or documents after scans and blood work. I just need to be told if I’m doing ok or not, in basic terms. I find all of the options overwhelming. 

I think I have social anxiety - sometimes I leave my text messages unread, don’t reply for days or often not at all. Same with phone messages (I’ve missed more then one appointment because of this), or cancel plans because it feels like too much. Usually it’s something I don’t want to think about, talk about, or I just don’t know how to respond. Then I feel guilty, and not wanting to explain myself I put it off a little more. A vicious cycle cycle in the end. 

I feel anxiety having to plan out my week since I don’t drive. I feel intense guilt asking people to come to me - or asking for others to skip work to take me to appointments, etc. I cancel or don’t do things because of the driving. I’ve seen this mentioned often in online groups, and I definitely understand, which is why I’m mentioning it. 

And I know what you’re thinking!  “SAM, YOU SHOULDN’T FEEL THAT WAY AT ALL!!”, re: all of the above. 

I do, though. It’s not you, it’s me. I know it’s wrong but I’m not sure I can feel another way. Trust me, I’ve tried. 

Anyways, that’s the start to my week and how I feel today. Other then reading, my hobbies have dwindled, so I have a lot of time for thinking. My mood changes often and tomorrow is a new day. I want to change my record player and storage layout (big dreams) but I should probably make my bed and put away the three piles of laundry (they’ve been sitting there for over a week).

I’m not going to edit this one. I’m going to leave it as is because A) it takes a lot of time and B) trying to be genuine. You know.

If you made it to the end, thanks for reading this word vomit of a post. I feel better already. 


Thursday, March 15, 2018

Last Time On Sam’s Blog (a recap)

Montreal, bestie tattoos, post craniotomy pictures, birthday, engagement parties, Nordik, libraries and the theatre. A few of my favourite things (minus the craniotomy...) 

I haven’t posted in a long time. It’s almost like I need a TV show recap (“Last time on Sam’s blog...”).

I went to Montreal and had a great time. My sister came for the show, I was on the end so I could lean on the side of the chair for balance (!), we went to visit my Nanny plus my Aunt and I got to spend time together. 

I had my craniotomy on that Tuesday in November. We got to the hospital very early and my parents, Jeff’s Mom and Jeff were there to see me off. I don’t remember being too nervous. I was grateful it was in a good spot to take it out, and Dr Sinclair said he blocked off his whole day for me. 

The procedure took a good 8+ hours. My family was going stir crazy and wanted to see me. When I woke up in recovery it was night time but I was on so many drugs I don’t remember a thing. Everyone went home to sleep. I woke up at about 5AM and there were residents everywhere. They put on the lights and ripped my curtain open. They asked me how I was feeling. I could see a bunch of them laugh and eat breakfast behind the one that was talking to me. . He saw someone brought me Quality Street chocolates and said “Hey! Those are my grandma’s favorite!!” .  Another resident asked what I did for work. 

I cried at that point because I felt disrespected, like they didn’t understand the gravity of what I just went through. The residents were eating breakfast, laughing - and I could barely process the last 24 hours. 

Jeff and my mom stayed with me while I was in recovery because they didn’t have a room for me. My nurses and porters were amazing. They took care of my every need so quickly. One nurse showed me her crochet, which I said I loved, and on my bed before I was discharged there the crochet mouse was. The porter knew the hospital food wasn’t edible (understatement of the century) and offered me half of his club sandwich. 

On night three they finalled moved me to my semi-private room. I was really excited to have some privacy. We walk off the elevator and immediately hear someone yell at the top of their lungs “CODE BLUE! THIS IS A CODE BLUE SITUATION!!”. We see the guy yelling be taken down by an officer and that’s when we realized where I was healing was ALSO the place they kept people before they went to the Royal Ottawa. He asked about his scheduled appointments often and someone had to stay outside his room at all times. 

I had tons of visitors bearing My Favourite Murder gear (it’s a podcast look it up!!), hot Cheetos, Archie comics and even Wy as a cotton candy for Halloween taped to a container of cotton candy (let that process!). I am super lucky.

I felt like my head was so big. I genuinely thought it was twice it’s size until I asked Jeff and he said it was pretty normal. The drugs kept me from being in pain. It was such an easy operation, all considered pain-wise. I woke up to no more mobility in my right hand and right foot, though. The steroids had taken all my muscle mass so it was very hard to get up and sit down. 

They asked if I wanted to stay another day. Jeff and I looked at each other and said HELL NO. We were discharged, and I got to go home. I was still on steroids and we all know how I feel about them. After gaining 15+ lbs and not sleeping for weeks, I finally got off of them and started looking forward to recovering.

Unfortunately, the function of my hand has not come back yet and the mobility of my right leg is very ‘robotic’. When I realized I didn’t gain back function of my right hand it felt like I lost everything - being able to hold my toothbrush, a hair dryer, do my own makeup, wash my own hair, text, eat and cut food,  colour. Just using both hands to carry things is something I took for granted. It’s an unimaginable loss and I am still struggling with trying to move on with this new quality of life. My mobility has made me fall so I am shaky on steps and especially ice. I feel like this is the first time I have to really rely on others and that doesn’t feel good. Being “disabled” doesn’t feel good. I have spent a lot of money on physio but so far it’s not working. 

My pathology from my craniotomy came back as mostly necrosis (dead tumour) but also some new tumour growing back - which is why we removed it, in case this were to happen! I had an MRI this last Saturday on my brain, and although I am pretty confident those results will be fine, there is always some anxiety that comes with a scan. 

In January, I had a permanent option of a clip being put in to hold my vocal chords together. They put it in through my throat so I have another scar to add to my repertoire! Although not perfect, I am a lot louder and less raspy. They don’t ask me to speak up at Sephora so I’m basically happy. 

Mentally, this has been a very long winter. Without driving, I feel isolated and there are days when I stay in bed until 4PM. I keep waiting for the sunshine because I know that will help. I think this will be what my next post is about. 

We booked a trip down to Nicaragua with some friends so with this scan (provided it looks good), we leave on April 22nd! I also got floor tickets to Justin Timberlake in April so it’s shaping up to be a good month. 

I definitely missed a ton, but for now this is long enough! If you have any questions or wanna chat - e-mail or Facebook me as always!! 



Tuesday, October 24, 2017

To Do Or Not To Do: That is the question

This one is short but sweet, so I didn't leave you hanging!

I finally forced myself to lie in bed at 3AM last night, knowing I had to be at the Civic today at 12:30.  I had my MRI results, and this would determine my plan of action. I'm not sure if it was the steroids or my unoccupied mind that kept me awake - but man, I got into some dark places. I haven't been on steroids without a "headache" or being very sick, so I wasn't sure how they would affect me. I have a very loud, noisy cough and my bones ached all over. I hadn't yet gotten the results from the neck down, so I let my mind wander into what 'it' could be (definitely not just a cold, or from sleeping sitting up....).

This morning I woke up and knew I was off balance, tapering off of 6mg to 4mg of steroids. I had a few more days left, but I knew there was no change in using my right hand.

They kept me waiting at the Civic for an hour (could be worse!), but my mind kept going dark. I kept thinking about my results, promising to be good, but with the possibility of anything. I never take what the doctor's say firsthand anymore!

First the good news: Dr. S says I am stable from the neck down - my lungs and my bones. I was elated. All these aches and pains are from other medications or illnesses but they are NOT cancer. Thank god!

From the neck up, my scan shows almost the same thing as last time. Meaning, the steroids aren't working to dissolve that dead tissue. Additionally, while I won't know until I get the pathology report back on it, it does look like tumour and necrosis forming together in my cerebellum.

They can't radiate on the spot again while it's in there so it must come out. I will stay on 2mg of steroids unless I feel I need more until the surgery date. They are going to cancel my next chemo so it doesn't interfere with my surgery. I'll do tests this week to make sure I'm ready for surgery, and he said he would call me for a date next week. I'll spend 3-5 days in the Civic hospital. They will have social workers, care and aid for me. This is a bigger procedure then I signed up for!

They can't guarantee the use of my right hand, but it has to come out regardless. They worry if they go too deep I will have hand tremors or long lasting damage (15% I think - 85% not likely as someone pointed out ;) ). I could have fluid bleed out, I could have other side effects, but they will monitor me in the hospital. Everything can be dealt with, and usually it's a fairly straight forward surgery! They will put me out (!!), not even cut my hair, and suture me back up. It's close to the surface so they can do it again if need be - 60% chance of no tumour  growing back if they don't radiate after - 90% chance it won't if they do radiation (but... this could mean more necrosis. I can't win!)

So here's the question.

I want to go away next weekend to Montreal. I want quality of life, I have already made the plans, and I want to go. Is it worth pushing the surgery a week? Should I do it right away? My doctor said to get it done as soon as possible but I know it's still my decision.

I have been sick before and this sense of normalcy - when I can - is what I thrive off of. It helps see me through the dark times so I want to say YES to Lady Gaga, restaurant dates and chats with my aunt, visiting my Nanny and Uncle, going to a Leonard Cohen tribute (the artists are AMAZING). I want to shop for a new iPad and walk St Catharine. Then... have the surgery.

This may be a lot to ask (everyone has told me this is serious) but I feel like I am being serious too. Quality of life versus quantity of life. Y'know?

Anyways, tomorrow I call and ask how time sensitive this surgery is.

My MIL gave me a  brand new scarf from Joe Fresh that I plan to wear.

I'm seeing Kris + the baby.

I also become a real Mitchell (hello new health card!)

So this is shaping up to be a pretty exciting day.

Now if only I could sleep.....


Did you see our costume for book club? I am lucky to have a best friend like mine.

Sunday, October 22, 2017

Steroid Rage is a Thing: Updates from Cancer-land

Steroid rage. Kidding. Kinda.

Sitting here in steroid-induced mania, I decided I would write an update. It's October 22nd - which means it's been 22 days since I haven't had use of my right hand. It's funny when you think of quality of life - what would you sacrifice? - and having a right hand isn't one of them. I still can pick up a purse, but I drop just about everything - from the quiche to my mascara. I can't do much of anything creative (goodbye colouring!), and can barely hold my own fork.

I think my left hand is over compensating by now (as I type this with my left only), and I worry if I ever gain use of it again, it won't know what to do or have the strength to do what it used to.

I've tried everything - from left handed keyboards to voice to text apps (why can't they understand punctuation..) to a "pop socket" (which has proven, actually, to be the most useful).

Three months ago I had a brain MRI, and my new brain radiation doctor told me it looked as if I had a new tumour in my cerebellum - above my neck. Since it was close to another previously radiated spot, he was worried if he hit that one, I may have cognitive damage. Which is why, when I started losing function of my right hand, I knew what it was from and I didn't go to emergency. Still, I went for my MRI at the civic, and my sister-in-law peer pressured me into telling them. I spent the day in emergency. They read my results and determined I had swelling in the cerebellum of my brain. They prescribed me steroids, which I am against (summer 2016... shudder), but I knew I needed them to avoid being inflamed and having a seizure.

They told me to expect a call that Monday (the 9th), with a treatment plan. Not to knock on anyone's jobs, but when a potluck is being served and my MRI is cancelled and I still can't use my hand, I get a little pissed off. My doctor did call, only to tell me "there wasn't anything more he could do for me". Maybe a slight language barrier, but in cancer treatment, THIS IS A PHRASE NO ONE WANTS TO HEAR. I was well educated, so I knew surgery was an option, but having someone say that to me is something I'll always remember.

I got another MRI at the civic, to determine if it was actually new tumour that is growing in my head - or just radiation necrosis. This is dead tissue, but needs to be resolved like a tumour because it is taking up room in my head (AKA why I have no fine motor skills in my right hand). I had that done on Friday, the 20th. They should call me tomorrow with a new plan of action.

Dr. S - my neuro surgeon - told me that if it's necrosis, which he thinks it is, it could be resolved by steroids. This is a better option then having brain surgery, of course, but I'm almost done two weeks of steroids (for example, though - I was on 32 mg last summer, this time I started at 8 mg), and my hand seems to be doing worse. Quality of life is very important to me, so if the surgery is safe, with little side effects, I will go for it. Who knew open brain surgery you were awake?! From what I've heard it's tolerable and safe, but i'll ask tomorrow when they call. He originally told me 6 weeks of steroids - which I will deal with - puffy face, the weight gain, the constant hunger, the blurred vision, the headaches, being out of breath constantly and NO sleep - if they can guarantee my hand back. It's such a weird thing to have to think about, but at 11PM on a Sunday, this is what I'm contemplating.

In other news!

WE MOVED. We live in Carleton Place now (and no, with this gimpy hand I can't drive...), but we save all of our rent from living in Westboro (plus bills etc). This gives us a lot more freedom that I hope to experience with Jeff this year - travelling (even though, no health insurance! Where is safe that I need to go!? Short plane rides!).

I've kept myself pretty busy this September with the CIBC Run for the Cure (our team raised almost $15 000)! Despite being a Stage IV speaker, I got great feedback. I am grateful the packing/kijiji'ing/moving came before the issues with my hand because I don't know how I would have gotten them all done.

I was planning on going back to work very part time - 8 hours a week - in Kanata to experience some Christmas retail joy (I LOVE IT!), but without a working hand and a looming surgery that has been on the back burner. Cross your fingers for me! Life has it's way sometimes.

My voice is also not back to 100% (if Pure Kitchen brings me another turmeric shot - "it will make your throat feel better!). I have an appointment on Halloween to see my throat surgeon about a more permanent option for my voice. Right now, they injected my immobilized vocal chord with a botox substance, but a real surgery will entail a clip to hold my vocal chords together. Again, not a surgery for everyone, but after I heard my voice at the run.... I was like, is that me? We are lucky to get something that would normally be expensive in healthcare land for free here in Canada, and I always choose to feel very lucky for that.

This Tuesday we are having a Halloween book club (group costume with Kris and Wyatt!), and Saturday we are throwing a Halloween party. Friends are coming down, and I am so excited to see them. Life as usual, but weird with cancer trying to get in the way.

My birthday is November 18th, and Jeff and I made big plans to go to Nashville. Half me - wanting to see the CMA Christmas at the Grand Ole Opry - half Jeff, wanting to get a fried chicken sandwich and experience some of the food and culture they have to offer.

I went on a limb and got re-scheduled  Lady Gaga tickets in Montreal and will spend the weekend with my aunt. I have tattoos and Christmas markets to look forward to and every day I feel good, I refuse to lay in bed and feel down.

It isn't always easy - I often think... is this my life? but I've become quite good at accepting my reality - with cancer, with family and children, with work, with life. I am happier when I get to see family, friends, and have experiences I KNOW I wouldn't be able to experience otherwise.

So, time will tell with all the unpredictable variables above. All I can hope for is another day of feeling good, more treatment options, clinical trials. More snuggles with dogs and babies and husbands. More time.

That seems to be the recurring theme around here lately. More time.

Here is a spam of pictures that are NOT organized (oof! time!):

All that matters. Family, friends, husbands, pool parties, raising awareness, random road trips, hotdogs, winning things, cottages, photo shoots, cancer galas, funny cards, pedicures, work besties (turned into IRL besties) and new babies. 

That's it for me today, because this took me three hours to type up (maybe shorter IS better... less words!)

If you want to reach  out to me - I am always happy to one handedly e-mail or Instagram.