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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.....

PS:

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

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.



xoxo

sam

Tuesday, October 3, 2017

Nevertheless, She Persisted - Run for the Cure 2017

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I'll never forget when I was 24 and I found a lump in my right breast. 
It was the moment that would change my life forever. 

When they asked me to come in for the results on November 18th 2014, my birthday, I didn't change the appointment.
I didn't want to enjoy my day having the results looming over my head. 

My doctor asked me to come in alone and she said some of the most shocking words you can ever hear. 

"Sam, it came back as cancer."

The next thing I remember is my family being rushed in, as I was told I would have to endure chemotherapy, surgery, and radiation. 
I was going to lose my long blonde hair.
 I was going to have to take a leave from my promising career. 
Through the tears, I heard my doctor say - if you do this - if you push through this year - you're going to be okay. 
Trade one year of your life for many happy ones ahead of you. 

I quickly learned I was stronger then I thought, and by Christmas 2014 I had no hair. 
By February, I had completed three treatments and my outlook was insanely positive. 
I started a blog, gained media attention, and with this large following behind me - supportive friends, friends of friends, now husband and family - I never felt alone. 
Sometimes, with my illness, I felt lonely - but not alone. 

They urged my mom for detection as a precaution.
 She underwent mammograms,  ultrasounds, and biopsies and as we sat in the room waiting for her results we all couldn't help feeling - this is all a little too familiar.

My mom was diagnosed 3 months after me with Stage 1 breast cancer.
 Our genes weren't positive so this was random.
 I have always been close with my mom and it felt wrong that we would go through surgery and radiation together - but I also felt as if someone understood me.
 What we were going through together. 
I saved my moms life - this was the way it was supposed to be. 

During summer 2015, I was one body part short, with shorter hair but I felt stronger then I ever have. 
We both rang the bell and celebrations included cake and one direction tickets. 
I was going to go back to work; life.
 And even though I felt conflicted - how do you move forward, when you have gone through so much, and everyone else has stayed the same - I was excited. 
I was high on life. 

In January 2016, I found a small lump in my right armpit. I had learned my lesson and went to the oncologist right away, where they biopsied it just to be safe. I did further tests and I heard the words a second time: the biopsy came back as cancer. It has spread to your lungs and bones and brain.

I'm 26 and have Stage IV breast cancer. 

When cancer progresses to Stage IV, there is no cure.

I remember thinking - I traded a year of my life for better ones ahead. How can this be? 

I will be on treatment the rest of your life - and when the treatments stop - so will I.

I tried to maintain a positive frame of mind but I knew about Stage IV and I was afraid.
 My life is incremental - I live between 3 month scans.

The average life expectancy of someone with Stage IV is 24 months. I have been living 18. 

It took me a long time to figure out how I would make this a positive speech. 
This stage is normally for Survivors - how can I kick off the run and still be true to Stage IV - which isn't always pink, and ribbons and glitter. 

I am living proof that you can have quality of life when you are are diagnosed as Stage IV. With help from amazing oncologists, therapists, and phychologists I can stand here today and tell you I am living my best life.

Every day I wake up feeling good I celebrate - I see friends, eat good food (more like 30 lbs of good food!), I see movies, walk and get a coffee with my husband, adopt the perfect dog named Maverick. I snuggle my best friends baby's and swim, and am overjoyed with this time I have to develop my relationships with friends and family, to take a step back and realize what my purpose is, what am I here for, what am I to accomplish in this life?

Last summer I was very ill and decided to get married. I can't have children, chemo and basic morals have taken that from me. Still, I push forward. I want more time. I beg and plead - more time. More time. More books, music, movies, discoveries. I want more of this beautiful life. 

We are all gathered here today because we have been touched by cancer. We have lost loved ones, we care for those whom have to go through treatments or we are survivors - or thrivers - ourselves. 

I am asking today, not for a cure, but for time. More research, more treatments available to me, means more time to my husband, my best friends and family. It means seeing my nephew walk for the first time and watching my sister go down the aisle. 

More time.
 I'm not asking for a cure, I am asking all of those who have been
Touched by cancer - early or late Stage -
to give to Stage IV and grant us more time.

Thank you to everyone who joined our team, spread word about MBC, donated their precious time and made Metastatic Breast Cancer Ottawa one of the Top 10 teams in the region,  with over $13 000 donated to MBC. I am so grateful to my husband, family and best friends, Thank you to everyone who watched and shared my speech, It was a crazy September, but I wouldn't change a thing.


xx

Sam