Saturday, 28 March 2015

"I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles" - Christopher Reeves

Feb 29, 2015

Local Hero. How fitting. 

That's the name of the last riding (cycling) session that Phil and I signed up for at this year's CANSuffer to Conquer event at Southcenter Mall. Although there were 7 heroes, not just one...

If you recall, this is the same event I stumbled upon during my chemo induced bald debut last year. The one that gave me the courage to accept my bald head when I was struggling with that acceptance. 

And so much more.

We were side by side on our bikes, for the second time that day. So many things were going through my mind. As I looked around at everyone pedalling, my heart was full.

And every time I looked at those 2 crazy guys on stage, my heart felt like it was going to explode from the overwhelming emotion. You see, everyone participating was there for the cause and committed to raising funds (ultimately benefiting the Alberta cancer Foundation). Just by being there, on a stationary bike or for support - they had my love and gratitude. But 3 guys - Mike, Martin and Jeremy - started out deciding they were going to truly, horribly, insanely suffer to raise awareness and funds for The Ride to Conquer cancer and people who are suffering through canser.

They decided to ride for 24hrs.

Straight.

Only 15 minute "breaks" between videos. No sleep. Lots of food.

Oh and lots of pain.

Think about going 24hrs just without sleep. No, not when you were in your early 20's and a party animal.

Now.

Think how awful that feels. Then throw in sitting on a hard, little seat (from hell??) while cycling to videos that have the name "suffer" right in the title... Kinda takes suffering to a whole new level. Why in God's name would anyone put themselves through that? As Martin (the founder of the CANSuffer event) put it:

"Because people with canser and their families don't choose to suffer - they have no choice. So we choose to suffer until there comes a time no one has to suffer because of canser". (do you sense some hero worship starting to build? You're right....)

There were also 4 slightly less insane individuals - Shawna, Myles, Ben & Simon - who signed up to ride for 12 hours. Yes, hours.

And you thought I was nuts for signing up do to The Ride To Conquer?! I think my threshold for what's considered crazy just rose a notch...or 100. 

Last year I didn't know about the 'suffering' part of the CANSuffer event until after. But the event touched me in a way that it gave me strength to keep going - these people believed in what they were doing and how research can make a difference. That belief and the action they took in turn sprung hope in me.

Being a participant 9 months later was extremely emotional for me. Phil and I walked in the same mall doors I walked through last year - and I only made it about 6 feet from the escalator (to go down to the event) before I dissolved in tears. I wasn't expecting that.

I got myself together, and when Mike and Martin spotted me on the escalator and acknowledged me with a nod and salute while pedalling on stage, I felt my eyes well up once again. They had been going for over 15hours by then. I could only think "I'm here. I'm actually here." And there they are, going for 24hours. For people like me. I broke down again. I wasn't expecting that either.

And then I touched base with many of my One Aim members. I got to see who Jeremy was - the 3rd person going for 24hrs. I also got to see Shawna, Ben, Myles and Simon. I had met Shawna previously, but didn't know the rest of them.

I was with my team. And they were with me.

And then Bobbi showed up with her family in tow. Then Andrea. And Liz and family. I knew they had all signed up, and was expecting them, but seeing them there in the flesh - Liz never having been on a spin bike, Andrea only twice before (the previous week!) and Bobbi ready to push herself - I could feel another damn lump in my throat.

They were here. For me. How lucky was I?

My parents got to the mall too to cheer us on since they had a concert to get to a while later. They had mentioned they would come - but seeing them show up touched me still. I had surprises that day too. Ray - who knows my parents - and who I (sadly) met at one of my last oncologist appointments & his first, came by with his wife to say hi and cheer us on! He was just finishing up radiation. I kinda hoped we were mutual inspiration for each other that day. He was there for me, and I was riding for him.

When the Revolver session started - our first - the whole energy of the event felt hopeful and there was this great sense of camaraderie. For the first time, my 'fear' of not being able to complete The Ride subsided. These people - whether it be my One Aim team, Phil or my cheerleaders - wouldn't let me fail. Of that I was certain.

And in all this emotion, there was Phil. Pedalling away - chatting to everyone and smiling and having a great ol time. My rock. My silent partner who is often quietly in the background, but always actively supporting me. I gave him a smile but I don't know if he could see the emotion behind it. Knowing him, he probably did....

Phil's parents showed up with our kids and another wave of emotion hit. I'm doing this for those who've gone through canser. For those we've lost to canser. For those who are currently going through it. And so that future generations - like my kids - won't know the crushing feeling of having the words "you have canser". My hope is the money we raise now will either lead to a cure, or at least make it a manageable disease that is more annoying than life threatening.

The night before CANSuffer I was so inspired by the 3 24hr riders that I decided to sign up for a 2nd session. Phil said he was good with just the one session we were already signed up for. After asking my One Aim teammates, I chose session 10, which was the last session. Phil got a good laugh when I realized - after I signed up - that it was not an hour, but 1hr 20 min!!!

After our 1st session, Phil himself was inspired by the event and camaraderie and the first thing he did when he got off his bike was sign up for session 10. 1hr 20 min or not. He got the last spot.

Kelly and Janis came to lend their support during my speech....ya Martin, the founder of CANSuffer, asked if I could say a few words...which turned into like 12 minutes worth of words lol. I never was good with 'brief'! It was not too hard to write - being on a topic so near and dear to my heart - but I was pretty nervous. Writing a blog is one thing - talking in a mall is a different thing altogether!! But with so many supporters there it went well and I didn't even fall off the stage or drop my speech! Here it is if you are curious (and have 13 minutes to spare...)




I did miss a fellow warrior's speech - Carol-Lynn - who is going through central nervous system lymphoma treatment right now (and who's chemo put her chronic lumphocytic leukaemia into remission). She was rocking some awesome pink hair and everyone was talking about her speech when Phil and I returned to the mall later on. I was very sad to have missed it (but found her on Facebook and now can follow her story live ha)

So as we rode together in session 10, with our One Aim teammates by our side, I took a moment and took it all in. The feeling of joy and love and hope lifted my spirit - which had been struggling since treatment ended. I looked at all the red, sweaty faces of each rider. My eyes watered yet again when I looked on stage at those inspiring, amazing, crazy Angels up there who must have needed toothpicks to keep their eyes open and God knows how their legs kept moving through the pain. 

9 months ago my Mall Angels helped me through treatment. And now they are helping me through survivorship. What a gift.

A lifetime would not be enough to thank them for what they've given me. 

I believe participating in CANSuffer 1 month after radiation ended was fuelled by the motivation they provided. No one doubted I could do it - so I did it. My love for the team is what will carry me through to The Ride To Conquer. (ok, and maybe some training with them & Phil will help too...along with the cheerleaders in my life!!) 

So to my teammates, my family, my friends, and my Luv who were all by my side - Thank You.

To the 4 individuals - Shawna, Ben, Simon and Myles - who pedalled a crazy 12hrs - Thank You.

To Jeremy who completed an insane 18hrs - Thank You.

And to Mike and Martin - you are my heroes. I can't imagine the pain during and in the days following your heroic 24hrs of suffering but from someone who's suffered because of canser - it meant the world to me. 

Thank you all from the bottom of my heart.

As I posted that night on Facebook:

"The absolute best of the human spirit. That is what we experienced today. The best day - top 5 for sure. The blog for today will write itself, but at the moment I am overcome with emotion and at a loss to adequately express it. Everyone we rode with or came to support us - Thank You. For a second year in a row I've been humbled. What an absolute privilege and honour. I will never forget today".

I'm so glad you came.







Thursday, 26 March 2015

So, Where's The Party? - (from Picking Up the Pieces by Sherri Magee & Kathy Scalzo)

Feb 20, 2015

Today I had an epiphany.

Which is great because this week I feel like I crashed and burned in all my "survivorship" glory. I had been warned about the period following the end of treatment. How suddenly it all catches up to you - but I thought because I was writing my blog I had been "dealing" with things along the way. So maybe for me it wouldn't be so bad.

Sigh.

You think I would have got an inkling what was in store for me when I had a few very bad nightmares over Christmas - which was before radiation even started. How the fear of re-occurance has steadily grown since surgery. How that bad headache or strange back pain can scare me so bad I can't fall back asleep at 3am cause I wonder if it's come back and metastasised...

Wednesday I hit the wall. Watching 3 women with stage 4 breast canser - all three were re-occurrences of previous non-stage 4 - who's disease is progressing, broke me. I posted a very down Facebook post and was filled with anger at the pink ribbon. Breast canser is NOT pink or cute or fashionable. So what's the point? Ra ra ra, go Team Pink, but women are still dying.

Dying. 

This disease kills.

And then my anger dissolved and I cried. For about half an hour. It was a bit of why me? Why anyone? How long will my kids have their mother for? Two of the women I mentioned have kids. One has kids the same age as mine. They are living my biggest fear. 

The epiphany came a little while later - while I was walking Daisy. I was thinking about how I've felt like when treatment ended, I walked through a door and fell into an abyss. A black hole of "what now?" I no longer have canser - which is frickin' fantastic - but canser is a sneaky bastard. It never seems to be just cut and dry "you're done - it's gone forever". They even put a timeline as to when it's the highest chance if it's going to come back... 5 years is general but seems like for triple negative breast canser it's actually highest chance in the first 3 years...when does the clock start? I've read mixed timelines on this too - I thought it was after treatment ended but I've seen some oncologists say it starts day of diagnosis...so beats me - 3 years plus/minus a year...

Anyways it was as I was thinking of all this and fear was washing over me that I realised I never truly dealt with the emotional trauma from treatment. Maybe you just can't when you're going through it because then you might not get through it. You may acknowledge the feelings but it's more like "ya, nope, not going there right now". When physically you are going through hell, mentally you need to focus on any positive you can. At least that's what I had to do to get through it. Yes, I wrote some "dark" blogs, about some of the bad days - but that just helped me to move past it - not deal with it.

And that was my epiphany. 

Now is the time for facing, processing and ultimately healing from the emotional trauma of being - as another blogger put it - "poisoned, cut and burned". Just having that light bulb moment made me feel better. I think sometimes having an understanding of what is happening to you makes it less scary. Because the last week I was getting pretty freaked out.

At yoga the next day our (amazing!) instructor Kelly was talking about the new moon and asked us to write an intention for the next month. Something to focus on. 

I decided this would be my month of mourning.

No, I'm not gonna cover all the mirrors and wear black everyday...But I will allow myself to mourn all the loss I've endured the last year. I've been so grateful but it doesn't mean it has been without sadness either.

I don't plan to be consumed by it - but in order to move past it, I have to move through it. Let the emotions come to the surface so I can feel them, accept them, then let them go. 

I think this prospect is scarier than all the physical trials I've faced. But if I don't face them now, they will burrow deep and will need to be faced eventually.

No time like the present right?


Sara Bareilles - Gravity (YouTube)

Tuesday, 24 March 2015

Oh Happy Day - The End of Treatment At Last!

Jan 20, 2015

8 rounds of chemo.
A bilateral mastectomy.
16 rounds of radiation.

And it was my last radiation treatment.

The last one!


I practically leaped out of bed that morning. We surprised the kids the night before with the news that they could come with us if they wanted to. Emily even got to miss school...we kinda thought this was more important...

The four of us walked in all excited. The kids were physically bouncy and full of energy but I think I had a grin that would give the Cheshire cat a run for his money.




Last change in the change room (accompanied by Emily lol). Last wait in the waiting room. Last time waiting under the big machine to get 'radiated'. Last set of nerves as the machine finished the treatment. I could feel my tears pooling as that last treatment came to an end - but this time they were not tears of fear.


They weren't just happy tears either.




They were also tears of immense relief that the traumatic canser treatments had now come to a close. And with it, permission to hang up the gloves, and loosen up the emotional armour that had protected me and allowed me to get through all of it - from the first chemo to the last radiation.

I was done!



As I got off the bed and walked through the (thick!) door back to my family, I felt like I was literally closing the door on my "canser patient" title and opening an new one. To what title - I did not know.

We walked up to the infamous bell and tied a ribbon to my Thank You card which Emmy and I tied to the "thank you" bar. There were many, many Thank You ribbons there. I felt the lump in my throat as my note joined the rest.


Maureen, who had come to all but 2 of my chemos, once again came down to congratulate us on our last day. She is the one who took the happy video of us tying the ribbon.

And then ringing that bell.

The ringing of the bell - which we did as a family - symbolised so much more to me than just the end of radiation.

It was the end of "mommy being sick". The end of scheduling my life - and my family's life - around canser. The beginning of "life after canser". And yes, the end of frightening treatments. All of them.

Good riddance.










We left my morning appointment and headed to one of my favourite spots - Second Cup lol. I had a celebratory mocha because it was too early for a Guinness - even by my standards!

Like the rest of the events on this road, I still only focused on that day. I didn't dare look forward - the future was about to get scarier in the days to come but for the moment I was happy and chose to live in the moment. The moment my "active canser" chapter finished.






It was a joyful, happy day and a milestone I won't soon forget.

Looking back now, I realise I was on the edge of falling into the Survivorship Void - but hadn't yet fallen...





Pitbull - Feel this Moment (Veevo official video on YouTube)

Friday, 20 March 2015

Keep Calm and Beam On - Halfway There!

Jan 8, 2015


It doesn't take long for you to just fall into the 'canser ass kickin' routine...as the days went by, there was a comfort in the predictability of the daily treatments. Ha- even if every appointment time pretty much changed. But it was the same people, the same unit and some of the same warriors too. I saw that young warrior (packed in bags - from my first day) a handful of times. 

We decided to bring Emily up for my second treatment since now we knew what to expect, and because she had many questions. We decided NOT to bring Ethan...partly because he was 3 1/2 and we thought a bit young to see it, and partly because we didn't want to risk a 'radioactive incident' due to his mischief...




Emily felt very mature that she got to come up. I was glad we made that decision. The techs were amazing with her - she got to come right into the room and got to take pics lol. She asked a few questions and they answered her fully and respectfully. I think she felt very important....
Then she got to watch me on the camera's and spoke to me via microphone as I received my treatment. To be honest the waiting for it to start still freaked me out a bit but Emily was a good distraction and got me to dig deep so no tears leaked out this time. I was glad now she could envision what my daily treatment consisted of instead of imagining God knows what. There were no needles, no noises, no pain and no blood.





She talked about it for days after.

Originally my New Year's Eve radiation was scheduled at 3:15. We were spending New Years with our friends Dave & Mandi (and all the kids) so I was a little disheartened that it was so late. I mean I guess spending the last day of 2014 at the Tom  Baker getting zapped by radiation is a bit disheartening ha ha. But having it so late sucked more because then we might hit traffic and be even later to get home. I don't know if I've mentioned it but I live way in the deep south city limits. It takes 30 minutes on a good day to get to Tom Baker. On bad days it can (and has) taken over an hour. Thankfully they found an opening at 9:30am and changed the time!!


Getting it over with first thing was nice because then I had the rest of the day to get some bean dips ready to bring to Dave's. Mandi is a vegan so it was nice to try out some recipes from the new cookbooks we got over Christmas on someone happy to try them...as opposed to scared to try them! (at least if she was scared it was just cause of my general lack of culinary skills and not because they were vegan!)









It was a great relaxing way to spend New Years Eve. I decided not to drink (at all!) through radiation so I just brought my fake beers which consisted of Amber O'doules. New Year's Day I had no treatment (yay for stats!) so we really enjoyed it. Skating as a family and then off to Phil's aunt's place for supper. My fatigue was still pretty much in check so I was relieved we were able to go.



Knowing they really encouraged people to bring family and friends led me to ask Andrea and my parents if they wanted to come up with me and see what all the fuss was about. They were all interested, which was nice because it meant I had different people to come with me.



I have to say, halfway through, I was still getting nervous before each treatment. Just while I was alone in the room, waiting under the machine for it to start...A psychological thing I guess. I thought maybe by the end of it I'd be all good with it.

My skin itself was not fairing too badly thus far. More dark pink than light pink...looking like I went in the sun for a few hours without sunscreen. But the damn cream!! Here is my current cream stash...







Each one is for a different part of me!! Granted, most of it is once a day, but the Glaxal is 4x a day...It's more time consuming than I thought, although I remember Kelly saying it took alot of time. All the other creams are not just because I'm trying to be high maintenance...trust me, I'd love nothing more than to be regular ol Cindo again...but the treatments have taken their toll. My skin is dry from chemo still...my toenails I still fear might fall off - the nails are brittle and yellowish...my heels crack if I don't cream them - (which used to only be in the summer from wearing sandals...). My arms and legs slough dry skin (that looks like dandruff) if I don't cream every morning as soon as I'm out of the shower. My face is the same...And I have a vitamin E cream for my left side that Kelly got me to help heal the scar tissue so it's less...there?



And of course the 1 hour "air out" time....If you put your hand on my right chest you can actually feel the heat after radiation. The nurses have assured me though that I am not "radioactive"...a tad disappointing...
However, my friend Liz said now I really am a "hot" Mama! ha ha...I said to another friend "I should go outside on a cold day and see if I steam - then I'd be a "smokin' hot Mama"!!



Anyways, I try to air out when the kids aren't home because they are still sensitive to "my lines"as they call them (which I like much better than "my scars" so from now on that's how I'll be referring to them!) It forces me to take a 1 hour break daily so that's a bonus I guess...

I also don't have any blisters yet...however near my right armpit - like the soft part just below - it's getting quite tender. Kelly told me she got blisters there and so I have been putting extra cream. But I didn't realise part of my actual armpit (lower half) was also getting zapped so I hadn't put any cream on it till the other day...So I'm a little worried that's going to blister...And the itching!! I don't remember anyone telling me it would itch like this...kinda like after a sunburn before you peel - I could scratch all day long and still get  no relief. Although the cream does soothe it for a while...but that's more annoying than painful (unless I give a real good scratch with my nails when I'm not thinking...that doesn't feel so nice!)




But overall it's all going OK. I've gone to a few appointments now on my own and I use the drive there and back to sing loudly in the van. Probably a good thing for others on the road these days that it's not summer with open windows...

Oh and you can now find me on Facebook if you want an easier way to follow the blog because its a public page called My Inner Ninja - A Journey Through Triple Negative Breast canser And Beyond.




Thursday, 19 March 2015

Here's to a New Year filled with more "dances"


Dec 31, 2014




The Dance by Garth Brooks



Looking back on the memory of,








The Dance we shared, beneath the stars above.





For a moment,
All the world was right
How was I to know, 
That you'd ever say goodbye? 













And now I'm glad 
I didn't know






The way it all would end, 











The way it all would go...








Our lives, 










Are better left to chance,













I could have missed the pain,










But I'd have had to miss 














The Dance.



Holding you, 













I held everything.










For a moment, wasn't I a king?










But if I'd only known,
How that king would fall,










Hey who's to say,












You know I might have changed it all.











And now I'm glad I didn't know 













The way it all would end,


















Natasha visiting from PEI

The way it all would go











Calgary - Cindo's Rack Attack





Our lives are better left to chance










Ottawa - The Inner Ninja's



I could have missed the pain, 










But I'd have had to miss





















The Dance. 



 Yes my life







Is better left to chance,








I could have missed the pain








But I'd have had to miss The Dance.