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Thursday, June 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. 

Monday, April 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

Wednesday, April 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 BeyoncĂ©’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!!)

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:

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.

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. 

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 


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. 

xx 

sam

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. 

Sam