"...Not all those who wander are lost..." - JRR Tolkien

Oct 10, 2015

In the midst of trying to adjust to life post treatment, and all the challenges that that entailed, it came.

The Call.

I was at work and my cell phone rang. It was a number that I didn’t recognise, which meant likely a medical person was on the other end. With so many appointments lately I answered and was not surprised by the “Is this Cynthia Faas” (yup...one of my medical team…)  So I was listening with pen in hand waiting for whatever appointment I was likely going to be reminded about.

“This is Mary Anne from the genetics clinic”.

Hmmm….I wonder if they need something more from me because I was just there in June and its only October…they said results would be a minimum of 6 months to a year or sometimes longer …

“I’m calling to book an appointment for your results.”

Whaaaaa…? My heart stopped. Or felt like it did. Results? So soon?  Early results – this freaking early – is definitely not good.

After I came back to earth, she asked me if I would like to come in person or get them over the phone (they had already told me this would be my option when I met with them in June). All I could think is Phil wouldn’t be able to get time off on such short notice and neither could I (which was not necessarily true but it felt true in that moment)

“Over the phone will be fine.”

I felt like I was in a fog.

“Ok we have an appointment tomorrow at 1pm. Prianna will call you then. Do you have any questions?”

Questions? My life could once again drastically change tomorrow at 1pm…I  had lots of questions. But none that she could answer.

“No”.

“Ok she’ll talk to you tomorrow. Take care and if you need anything or have any other questions, feel free to call me”.

And with that I hung up.

I felt like I did on that fateful day when I got the call to come in to the clinic about my results from the biopsy. The day I was diagnosed. I really hadn’t worried about genetics. It was going to be possibly a year or longer before I had my results. But it had only been 4 months. I was now within 24hrs of finding out if I carried a gene that would put me at a higher risk for other cansers.

Plural. 

A gene mutation that is hereditary. One that I that I might have passed to my 2 babies. Before the crushing guilt could flood into my heart, I somehow was able to push the whole idea of getting results from my mind. I wasn’t getting the results today, so why worry? Maybe it was denial. I didn’t think 24hrs of denial was unhealthy in this case. My Inner Ninja was awake and ready to rumble, but there wasn’t any info yet so if I allowed myself to go into full battle mode, I’d just end up scaring myself. If my life was once again going to change tomorrow, I wanted to enjoy the reality of life as I knew it now for just a little longer. We have faced everything head on but I just couldn’t go there yet.

And so I put “genetics” in a locked box in the corner of my mind, and hid the key.

I think my family were bracing themselves. There wasn’t any “oh its probably nothing” this time. They just essentially said “well, whatever the results we’ll deal with it like we have everything else. You’re not alone and we will get through this together.”

Am I lucky or what? If they were worried, they didn’t say. I felt bad though that I was putting more on their shoulders. I didn’t want them worrying about me. I was a little scared, and I didn’t want them to be scared too. I also didn’t want to continue to be a burden.

I actually slept well that night. But when I woke up, the first thing on my mind was, “today I get the results”. It was a lot harder to keep my fear in check compared to the day before. I just kept thinking “please let it not be a mutation” As the day went on, it turned into “please if it’s got to be a mutation, let it be BRCA2”. But even BRCA2 carried with it risks. I felt like a mutation would mean canser was written into my very genes. It wasn’t a comforting thought.

The closer it got to 1pm , the harder it was to concentrate. I had an office I could use for privacy so I could conference Phil in to the call. This was thanks to my manager and her boss – they were really great about it all.

1pm came and went. Each minute after 1pm was excruciating. At 1:10 I emailed my family to let them know I was still waiting for the call…and then my phone rang. My blood ran cold. My heart rate suddenly increased. I answered the phone then called back both Prianna the genetics couseller and Phil. Once we were all on the phone, she got right to business.

“So the report came back and a mutation was found…”

I can honestly say this felt almost exactly like the moment I was told I had breast canser. The world stopped turning for a second. Everything slowed down…It felt like a physical blow. They found a mutation.

As she started to go into detail about what the mutation was, I interrupted.

“Which one is it? BRCA1 or BRCA2?”

“Oh, sorry, yes it’s a BRCA1 mutation….”

I felt like I had been hit again. I’m glad Phil was on the phone because I was having a hard time processing this piece of information as she was explaining exactly what the mutation was. All that kept running through my mind was that I had a mutation. And that it was BRCA1. The bad one…F*%k.

Looking back now, I realize I was in shock at that moment. 

As she was going over the risks associated with this mutation, she started with “so this is why we would attribute you having had breast canser. We would recommend a bilateral mastectomy, but you have already had one so that’s good. This mutation puts you at a 35-46% lifetime risk of getting ovarian canser. We recommend surgery to remove the ovaries and tubes, and can refer you to a specialist if you want more information, who can go over screening and surgery options. The reason surgery is recommended is because the current screening methods are not reliable. Unfortunately ovarian canser is hard to detect due to there not haveing a lot of symptoms, and by the time there is pain or discomfort, it usually means it has spread to other organs or the tumour is so large it is pressing on other organs. If you decide to see the specialist she can go over everything with you and give you the information to make a decision.”

“How long does it take to get in and then have surgery if that’s what I decide?”

She answered “Well it depends but I just had one woman who saw the specialist within a month, then had surgery within a couple months of that appointment.”

Wow. That seemed fast. My head was spinning.

And then I asked what I had been dreading to ask.

“What about pancreatic screening? My Dad died of pancreatic canser and you mentioned when we first met that that can be linked to BRCA1 mutations. “

“Yes, you can see a Gastro Specialist to ask about pancreatic screening. We think there is only a slightly elevated risk associated with BRCA1 and pancreatic canser. The screening for pancreatic canser, like that for ovarian, is also not reliable but the specialist can go over that with you if that’s something they recommend and you want to pursue.”

“And my kids?”

“Yes, well there is a 50% chance the mutation could have been passed onto them. It’s possible neither of them carry it. This mutation is not like a recessive gene that can be passed on but not be expressed. Either the children of carriers get it or they don’t. If they didn’t get the mutation, they never will, and they can never pass it to their future children. It would stop there. Because the canser risks associated with this mutation are considered adult onset, (which means they are not ones that present in childhood) the kids wouldn’t be able to get tested till they are 18 years of age. It would be their decision if they wanted to get tested or not. Even if they choose not to get tested, they would still be eligible for whatever screening methods are available for high risk people. That’s a long time away, so there could be different kinds of screening available to them by then – maybe even better ones than now.”

I was trying to take all this in. I hadn’t cried or been scared or felt anything really. Still in shock I guess. Then she said something that broke through that shock barrier.

“For your daughter, if she tested and carried the gene she would have the option of having a profolactic mastectomy…”

I don’t know how much more I heard because the tears started pouring down my face, like a switch had suddenly been turned on. My babygirl may have to decide if she is to have her breasts removed? All I could think of was what a burden that would be for a young woman to have to carry. I couldn’t stop the guilt now – it took over and one of the very rare times I thought “why us? Why our family? Why my kids?”

I don’t honestly remember much else of that call, except that she recommended that my mom come in to get tested, mostly to confirm the mutation was on my Dad’s side. Then if I wished they could put a letter together for me if I choose to reach out to his family to let them know of my mutation and that they could all get tested if they wished.

We hung up, and in that office, all alone, I cried out my anguish.

Not for me, but for what it could mean for my kids. For the decisions they may need to make in future. There was no room in my grief for hope in that moment. It suddenly felt so wretchedly unfair. All of it.

And so I cried.

Remembering I was still at work, I forced the tears to stop. I came out with red puffy eyes to tell my boss (and friend) the news. My eyes swam with tears when I got to the kids part.  With only an hour or so left of the day, she sent me home.

I had another cry when I got to the van.

At some point I called my parents, my sister in law and Phil’s parents (he may have called them) But I don’t remember these conversations though….at all.

I picked up my kids, got home, let the kids get on their bikes and I opened a beer. Phil came home with the 2 things I needed: Guinness and a hug. I was glad it was Friday- because I was on planet Pity Party, population 1. Tomorrow I’d wake my Inner Ninja and take on this new challenge but tonight I was going to let myself fall apart….

As the night went on though, I kept receiving all these texts, messages on Facebook and phone calls of encouragement and support from my amazing teammates, friends and family near and far.

Fall apart I may, but alone I wasn’t.

"I don’t feel that this is unfair. That’s the thing about cancer. I’m not the only one, it happens all the time to people. I’m not special. This just intensifies what I did. It gives it more meaning. It’ll inspire more people. I just wish people would realize that anything’s possible if you try; dreams are made possible if you try." - Terry Fox

Oct 5, 2015

As much as the last couple of years have been a journey for Phil and I, our kids sadly have been thrust into a world where they think its normal for people to get canser…which I suppose is not that strange given at 3 and 5 their own mother went through breast canser treatment, but it was horrifying to me. What kind of childhood is that? We were lucky though that they never asked if I could die. It never occurred to them that canser can kill. Last year we were also lucky in the sense that Emily’s kindergarten class didn’t talk about Terry Fox because they were not going to be doing the Terry Fox Run (each year the school switches the morning and afternoon class as to who will participate). This year though Emily was in grade 1 and so her class was going to learn about Terry Fox and then participate in a Terry Fox run at school. We had spoken to her teacher and knew they would talk about Terry Fox – including that he died. This made me worried about how Emily might react to this news.

Not wanting her to be blindsided in class, we decided to tell her about Terry Fox at home, the night before they were to discuss it in class. Her teacher mentioned they were going to watch a video about Terry Fox.  I was dreading the whole thing to be honest. I felt like Emily was just getting back on her feet, and I wasn’t sure how she would handle the news that canser kills. I hoped I was far enough along post treatment that she wouldn’t worry about how that new piece of info could impact her mom.

Phil was the hero. He looked up Terry Fox YouTube videos until he found one to show her. As I put Ethan to bed, he and Emily sat and watched the video together. Maybe it was cowardice, but I didn’t want Ethan to watch it. I wanted to keep his innocence intact a little longer. I didn’t want to bring death into the conversations I have with my 4 year old. Not yet. Breast canser, “chopping off boobies” (their words not mine!) and chemo were already conversations I wish we never had to have but felt we had no choice (though I think it was the right choice). But I drew the line at death (especially since it did not pertain to me).

When I was done with Ethan I made my way to Emmy’s room, where she and Phil were quietly talking. Phil told me as I walked in that Emmy wanted to talk to me. I looked at Em and noticed she had red puffy eyes. She was looking down at her hands. I could feel a lump building in my own throat.

As we talked, she told me she cried when they got to the part in the video where Terry Fox died. She said she was so sad he died and I wrapped my arms around her as she cried and tried to comfort her as best I could. I made sure she knew that had he got that canser today, he would not have died.  She started asking about my lungs and the canser I had and if it went to my lungs. I was a bit confused why she was asking and she said “well your canser was near your lungs so I’m worried it went to your lungs too” (I didn’t realise Terry Fox’s canser had come back to his lungs). I told her it wasn’t in my lungs and that the medicine the doctors gave me worked very well and that so far the doctors said I was doing well and getting strong. I reiterated that’s why I was trying to eat healthier and exercise – to stay healthy and strong and to help my body. But I hated that now another part of her innocence was gone – she now knew that canser can kill. And she knew that her mom had had canser. So did Terry Fox. And his came back….and then he died.

I haven’t gotten angry at my diagnosis very often. But I have to say I was filled with anger that my babygirl was hurting over something I had no control over. Over something that had come uninvited into our life and forced my 2 little kids to deal with stuff that is hard even for adults to deal with. And I was angrier still that I couldn’t say “don’t worry that won’t ever happen to us” because the truth was I didn’t know. I felt helpless. Feeling helpless when your child is hurting is one of the worst feelings. I focused on every positive truthful thing I could muster about our situation and just about canser advances in general. But I’d be lying if I said my heart didn’t break at the tears falling down her face. I kept it together until I got downstairs then I had a good cry.

I am so very glad though that we showed it to her at home. The next day in class the teacher showed them her video and she said Emily looked upset at the part when they talked about Terry dying, but didn’t cry. Then the teacher did something I think was brilliant. Up until now “mommy having canser” was like Emily’s “dirty little secret”. In kindergarten she always wanted me to wear my wig and prosthetic breasts when attending any of her school stuff and even sometimes for bus pick up. I was fine with this. If school was the one place she was just a “normal kid” I was totally good to go along with it.

After speaking with Emily quietly first, she asked the class if anyone had ever known anyone who had canser. Emily was the only one who put up her hand. Then the teacher asked Emily if she wanted to talk about it.

And Emily did…and the other kids responded! They asked her questions and I think it made Emily feel important that her mom and Terry Fox – the Canadian hero – had something in common. The way the teacher brought it up made it safe for Emily to talk about it, and it was the perfect context. I think it gave Emily a different way to look at it too. The kids were really interested in my story from Emily and she told them about chemo and how I was bald, which the other kids just couldn’t picture. Emily actually came home and asked if we could find a picture of me bald so she could show the other kids. I couldn’t believe it – my baldness was something she hated when it came to school.  I am so very thankful for her teacher’s quick thinking. I really think it helped Emily process some of what we had gone through as a family and gave her a different way to frame it. A positive way.

The night before the Terry Fox Run at her school, Emily asked if I would run it with her. My heart swelled. Of course I would. And we did. She put my name on her bib that was on her shirt. During the Run she asked if maybe next year we could do it as a family – Ethan would be in Kindergarten and she wanted Phil there too. I thought it was a fabulous idea.  So that will become another yearly tradition – doing the Terry Fox run together.

So as it has happened throughout the last couple of years – something that I was dreading turned out to be a really great Silver Lining in the end. We now have a new family tradition, and Emily finally wanted to talk about her experience and was encouraged by both her teacher and her peers – from a person and event that I thought would make her retreat further into herself…

And as for me, watching the video of Terry Fox’s life and legacy made me see him in a new light. Since I was a kid, along with pretty much most other Canadians, I knew he had canser in his leg, started his run to raise awareness and funds for canser research, then died during it. But I didn’t really know a lot of details. Having now gone through a canser diagnosis myself, and all that that entails, my respect for him has grown a hundred fold. His physical accomplishment – what he endured day, after day, after day physically with one leg while attempting to run across the country (and I wonder what side effects he may have still had from treatment) - is nothing short of miraculous. His passion and determination resonates with me. And I hope it did with Emily too.

I’ve attached the YouTube video I watched incase it’s been ages since you read about or watched anything in detail about Terry Fox. (esp. if you’ve since been through a diagnosis.)

And prepare to be re-inspired.

"...And when I ask "how was your day?" and you answer "not so good"...when you know you will make your way, but you just can't see how ..I will shine the light" - Shine the Light (Sugarland)

Oct 4, 2015

My birthday has become so much more than just another day to me. Having myself and my dad both diagnosed at age 35 and only one of us making it to 36 made my 36th birthday extremely special to me. It did not make my 37th birthday any less so. Each birthday from here on out is a birthday my own father never got to see or experience. So I kinda made a pact with myself (and him) that I would live for the both of us. It has become another way for me to reflect on the previous year with a different perspective. Although it makes me a little sad, I think he’d be happy for every extra day I get that he didn’t. I know that’s what I’d want for my own kids. Maybe that’s why I feel so close to him when I’m on my bike –it’s a time when I feel completely alive – whether from the peace and happiness in my heart or from the pain in my legs and/or lungs. Both remind me that I’m alive. And that’s not something I want to take for granted. So now when I wake up on my birthday, I use the first few moments of being awake to think of all that I have to be thankful for. It’s probably something I should do every day, but it’s something that comes automatically now on my birthday. I honestly think ‘wow I made it to another birthday!’.  Which I suppose kinda sounds morbid but that’s not how I mean it. I’m just grateful. Really, really grateful.

This year we didn’t do a big huge party just because we had a bunch of busy weekends before and my Grandma who was visiting from Montreal for the summer was leaving on my birthday. So the night before we went for a nice family supper. The next night my in-laws came over and we celebrated with them. My parents stopped by for a quick drink as well.  We had The Run For The Cure early the next day so we couldn’t do anything too crazy. But it was just nice to celebrate with those who were deep in the trenches with me as I have been healing – physically and emotionally - since finishing treatment.

Part of my way of celebrating 37 was asking my friends and family to walk or run with me at this year’s Run For the Cure. My goal was to get at least 37 people on my team, to celebrate my 37 years and to celebrate my first year walking it in “remission or canser free”. It was also my way of giving canser the finger. I like to give it the finger as often as I can…

Anyways, as usual, they rose to the challenge and actually surpassed 37 people with over 40 people !! Phil and I decided to walk it this year so we could do it as a family. Our kids last year walked with the grandparents but this year we wanted to do it all together.

This year’s walk was very different for me than last year. It didn’t really have anything to do with my being done treatment really, although I did want to walk it with those who supported us, kinda like our own personal victory lap. A thank you of sorts. But last year the walk was an encouraging, hopeful event when I was in the middle of some very scary treatment. It was a place of love and acceptance and above all hope. After surviving chemo, and then running 5k I felt almost invincible. I was in survival mode so my only option was to survive. This canser world was still relatively new to me. I was still bald.

I wasn’t scarred yet – emotionally or physically. I had no time for scars when I was fighting for my life.

But this year….this year I had 8 months from the end of treatment till The Run for those scars to leave their mark.

This year I had 2 red marks across either side of my chest where my breasts once were.

This year I had emotional scars that were open wounds from the toll the previous year had taken.

This year I had wiped away tears and soothed the hurt my diagnosis had caused my children.

This year I lost Sarah.

I now had a good understanding of what it means to have/had breast canser. Of surviving and what the aftermath of treatment feels like. Of losing friends to it – most of them young mothers of little kids. Of watching those living with Stage 4 face the ups and downs of a disease that can change in the blink of an eye. It’s messy. And unpredictable. And unfair.

So I arrived to this year’s Run For The Cure broken hearted, feeling a little lost, and more somber than hopeful. The shiny eyed innocence from last year was gone – replaced by a battle weariness from scars that ran deep.

And then an unexpected thing happened.

As we pulled up to the parking lot to meet some of our team, and I saw Andrea,  plus friends and family who got up early on this cool October morning, I suddenly felt emotional. These people hadn’t had breast canser. They didn’t have to be here. They not only signed up for my team and raised money, but also got their butts out of bed before the sun was up on a cool Sunday, to support me. To show me I wasn’t alone. To celebrate the good that had come in the last year. To show others battling they also weren’t alone. To raise money to hopefully make it easier for those after me.

Ultimately they showed up because I asked.

I always knew they supported me. But to actually see it in action was something else. The heartache I was carrying suddenly felt shared. In their eyes I didn’t see pity. I saw understanding. Acceptance. Love. Broken pieces and all.

Like The Ride, it didn’t change what I had been through. But it made it easier to bear. I think burdens are always easier when they are shared. And that is exactly what those who came and supported me did – they helped to shoulder the load.

The emotion I felt caused the start of a lump in my throat. To see my kids and my two nephews along with our neighbour’s daughter all “pinked out” in crazy gear was heartening. Especially to see the words “Aunty Cindy” and “Mommy” written in their scratchy handwriting across their chests.

I had a bib too but just couldn’t figure out what to write on mine. I put it off.

We all walked over to the Mall where the Run was starting from. And suddenly I was in my element – I kept seeing some of my breast canser girls and more and more of our team showed up…by this point the lump  in my throat was quite large…and then I saw Janis. I met Janis back in 2014 when I went to Wellspring after she was done treatment. She had the same kind of breast canser I had and had a rough, emotional journey from diagnosis to present day. But if you met her you would never know it. She is just so damn positive and exudes a joie de vivre. It’s infectious – I doubt anyone could be around Janis long and not feel happy. Which isn’t to say she hasn’t been know to cry….alot lol. She cries when she’s sad, she cries when you’re sad and she cries when she’s overcome with joy (she’s probably crying if she is reading this…ha Hi Janis!). She is compassionate, and kind and fierce. She has a heart of gold and she is one of those few people you meet in life who is just pure of heart. I count myself incredibly lucky that I met her during one of the scariest times in my life.

When I saw her with her beautiful superhero Survivor cape on, we threw our arms around each other and that’s when my tears were unleashed. They just started and didn’t stop. I think she cried too ha.

And then the amazing woman that she is, she just wiped away her tears, gave me an extra squeeze, told me she loved me and off she went inspiring others around us. What can I say, the people who surround me are pretty awesome. I’m a lucky SOB.

Anyways, most of my team had arrived and I still needed to write on my bib. I had met so many amazing women, so I could do like my flag for The Ride and try to put all their names on it. But really, this year there was one woman in particular who was on my mind. Sarah. And so I wrote:

Sarah

#FightLikeSarah

That was her call to arms amongst all those who followed her. #LiveLikeSarah was the other. She fought and lived with such gratitude for every moment she got. Even on her worst days, when she was in incredible pain, she would write about gratefulness and love. You couldn’t help but feel inspired by her. And you couldn’t help but love her. Sarah was stage 4 when I first read her blog post “This time will I die bald?”. Stage 4 means incurable. Our stories are 1 stage apart but eerily similar. When I first read the blog, her story scared me. I could have chosen to close my heart and just forget about her. Pretend I never read it. But I didn’t. I chose to reach out to her. And follow her journey. And got to know her. And love her. I cheered with happiness for her victories along the way. And cried with heartbreak each time the disease progressed and she was faced with some new scary reality. From a country away, I got to know her 5 children as she spoke of them with such love and pride. I often thought of Phil as she lovingly spoke of her husband and best friend Andrew. In the year that I knew this phenomenal woman, she taught me things about life and love that I will forever be grateful for. Some people may think I just opened myself up to pain by following her story. But really I opened myself up to love and compassion and gratitude. I do not regret my decision to follow Sarah. I feel incredibly blessed that our lives crossed paths, if even for a short while.

Writing #FightLikeSarah on my bib reminded me why I was there.

That hashtag may seem simple, but it’s tremendously powerful to me. Sarah was a true warrior. She loved fiercely, lived fully and tried to bring awareness that this is a disease that still kills, and without more research dollars to get more effective treatments for stage 4, will continue to do so. And so there I was walking to raise money.

Last year I was so happy that two of my One Aimers came out to run the 5k with me. This year, I was joined by 4 or 5 times that many One Aim teammates, along with some of their family members!

Talk about a great birthday present!!

I was with Phil and the kids, my sister in Law Andrea (who captained my Run for the Cure team) and her family, our parents, friends of our parents, neighbours, great friends (some I hadn’t seen in years – Thanks Lauren!!), kids and some One Aim teammates…

I felt incredibly loved. Which I think is the best medicine for a broken heart.

So as we all made our way to the start line, and then started our 5k walk after the runners took off, I felt a kind of peace and happiness. There was still sadness too, but the edges were a bit softer.

While on the walk I ran into some of the women from my BCSCF recovery class. They looked fabulous and I realised how much I had missed them. Then I saw Kelly and Judit. I think it’s seeing all these women who have been along for the ride and been through it themselves that make up the healing part of the walk. I just can’t feel alone when I’m in their presence. They know an intimate part of me like I know an intimate part of them just by virtue of having been through treatment.

And so we walked, and talked and danced and I smiled. We finished the 5k, got a picture of part of the team at the end, and everyone scattered back to their normal Sunday stuff...

It was chilly out so by the end we were cool, but I now carried a warmth inside that lasted long into the night. Another Run was done, money raised and with it a huge reminder that I was so very much loved.

So thank you to those who sponsored us, who walked with us and who showed up. I may not have said anything (for fear of crying) but it meant alot to me :)  Thanks for being my light...

I've added Shine The Light at the end of this blog - it perfectly sums up my feelings from this year's Run For The Cure. Have a listen. It's one of my favourite songs on the rough days.