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 (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. 

xx 

sam

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. 

Sam

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!! 

xx 

Sam