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Thursday, 6 October 2016

“In order to rise from its own ashes, a phoenix first must burn.” ― Octavia E. Butler, Parable of the Talents

Dec 9, 2015

I have to admit when I finally got my appointment date with Dr Kristensen, the gynecologist who would talk to me about having an ooferectomy, I was really disappointed. My appointment was for the end of March. March 20. I got my genetic results at the beginning of Oct. That means almost 6 months from when I got my genetics results, to when I would just talk to the doctor. When the genetics counsellor mentioned that the last woman got the surgery within 3 months of being at the genetics clinic,  I was kind expecting to get in to talk to the gynecologist within a month. Not 6.

When I went through all the tests to get diagnosed, then was diagnosed with canser, everything happened fast. I received top notch care. I felt like my life mattered to all who were involved on the medical team. I realize having cancer is something that requires urgent attention. But an appointment about preventing a canser that I have an almost 50% lifetime risk of , 6 months out, was like a punch in the gut. It made me feel like now that it was genetic, and that it only affects a small percentage of people, I didn’t matter. That my life didn’t matter.

It was a terrible feeling.  

“Genetic” cansers tend to be more aggressive, harder to treat as well as occur at an earlier age than “non-genetic” cansers of the same kind. The key is prevention, or at the very least, catching them (very) early in order to have a better chance at survival. It made me wonder how many gynecological surgeons we have in the province, and how much money goes into the hereditary canser “sector”.   I still hadn’t heard from the GI clinic about pancreatic screening either. I felt like a pest every few weeks calling the genetics counselling to see if they had heard from the GI clinic. But one thing I’ve learnt is you are ultimately responsible for your own health and you can get lost in the shuffle, so I kept at it, even if I was feeling frustrated with each call that didn’t result in an appointment.

From the time I had received the crushing genetic testing results, I started looking for others with BRCA1 mutations to turn to to discuss all the stuff that inevitably would come up as I processed the info. I found a few BRCA1 groups on Facebook. I joined a couple. I noticed in many of the groups there are a lot of previvors. What that means is they are people who carry the gene, but have not had canser – although they are at a high risk for breast canser as well as the others I have mentioned in prior blogs. They still have decisions to make, but as a preventative measure.  I honestly found it a bit hard to relate sometimes… Or maybe I just wondered how could they relate to me when, although I carry a mutation,  I also have scars and baggage from going through canser treatment, which is something they have not been through. We are making similar decisions about our future and our health, but our paths to get to those decisions are very different. So are the things that need to be taken into consideration – like radiation with regards to reconstruction. And the “flashbacks” that future surgeries can evoke from going through canser treatment. Or having to decide if/when to get a mastectomy when you are young and never had canser (although having the gene puts you at high risk – talking 80%- it doesn’t mean you WILL get breast canser – so the decision is ultimately left up to the individual). I am in no way saying one is harder or easier than the other – but in some ways its totally different. It bummed me out cause sharing and knowing others feel similar – that it’s not just me – is how I’ve gotten through so many scary things in the last couple years. And now I was mostly just reading what was posted cause I didn’t feel like some of what I was feeling was relatable to the rest of the women in the group…I felt like maybe it was just me. It also felt like my group of “canser peeps” who “got what I was going through” shrunk infinitely smaller. Which made me feel very alone.

This turmoil in my mind was not helped by my avoidance of the gym at work. My self-esteem was again at an all-time low, and I couldn’t bear the thought of going to the gym with colleagues who might look, or wonder, or talk about me and my freakish body. I’m sure not exercising made things worse. From July when I went back to work, till Christmas,  was probably the hardest 6 months emotionally since finishing treatment.

Its only in looking back that I realize it was completely understandable. I was adjusting to going back to work. I was adjusting to being more tired. I lost friends and my dog to a disease I hate with all my soul. And I didn’t have the benefit of riding with my One Aim team now that winter was here. Or exercising. And I was too tired and stressed to meet up with my canser girls…I was lacking many of the supports that up till this point had gotten me through the rough patches (I still did have Phil, my family and girlfriends, without which I would have for sure been in an even worse place)

After talking to Phil, my Mom, Andrea and Dr. Taylor,  I bought a gym pass for the new year (yes at my work gym – I decided I should face those insecurities head on...which included a new gym outfit ha). I called Kelly for a meet up. And I planned a One Aim Christmas party so I could see my beloved teammates.

Those were some of the best decisions I could have made, cause they ultimately led to a complete shift in my way of thinking, and best of all, in my way of viewing myself physically. Which was kind of funny timing with the New Year on the horizon…

Thursday, 1 September 2016

“In everyone’s life, at some time, our inner fire goes out. It is then burst into flame by an encounter with another human being. We should all be thankful for those people who rekindle the inner spirit.” – Albert Schweitzer

Dec 5, 2015

I’ve been blessed to have such love and support in my life…in those first few weeks when my friends and family and I were trying to wrap our heads around what “triple negative breast canser”  meant, and next steps, and all the (terrifying) tests required, Kelly came into my life.

She came in as a bright light of hope, throwing me a lifeline that helped to keep my head above water and we clung to each other during one of the scariest times of our life. We texted all day long most days going through treatment – esp. while going through chemo together. I finally had someone who really understood what I was feeling. Someone who had the same fears. Someone who made me feel not alone – a priceless gift when going through something so terrifying. Someone who could talk me down and who I could in turn talk down when our fears got the better of us. We each took turns being the rock…and being the emotional mess.

Kelly played a huge role in getting me through those days. Or hours. Or sometimes moments when I was paralysed with fear.

Navigating life after breast canser is tricky. It is often downright scary. Although we don’t talk as much as we did then, she continues to be my lifeline. The road after treatment has been more difficult in some ways than going through treatment was. It’s been almost a year since treatment ended, over 1.5 years since I was diagnosed, and still there are days, hours, and moments that I struggle to get through.

Kelly is by no means my only “canser” support – I’ve met so many amazing people on this road. I met a class full of women through BCSCF that are strong, vibrant, amazing women. I’m part of the Rethink closed Facebook group for young Canadian women who are going through or been through breast canser. They have all been great for a larger network of support. But sadly, not everyone’s story turns out with a happy ending. Some of these very women who have lent support and/or advice have their cancer return. The dreaded “mets” (meaning their original breast canser, has metastasised elsewhere in the body and is now incurable…also known as terminal.) I don’t think I’ve met anyone in the canser world who isn’t apprehensive of the canser returning. It’s a fear/anxiety sadly you just need to figure out how to handle. I’m told it gets easier with time.

However, when someone in the group gets mets – it’s a huge trigger. Suddenly every twitch I feel might be canser lurking…headaches are brain mets. Pain on my chest must be bone mets to my ribcage. Soreness, pain or aches between my ribs and pelvic bone must be some kind of ovary/kidney/liver mets. With my BRCA 1 status, I worry about new cansers like ovarian and pancreatic. I know it must sound laughable. Delusional even. But it’s actually really scary when this happens. The physical “symptoms” trigger my mind to go to very dark places -I look at my kids and wonder if I’ll see them grow up. Get married. Hold my grand kids. Many of the women in Rethink are young moms. Many of them too had been declared “canser free” before discovering it back and spread. They are not so different from me. I know people don’t want to hear about this side of the coin, and I’m not trying to scare anyone but its part and parcel of my life after breast canser. I just don’t talk about it.

Except to Kelly.

Hearing the heart wrenching stories also causes “survival” guilt. I don’t wonder “why me” so much as “why not me”? That also sounds ludicrous even to my own ears, but some of these moms have kids younger than mine. It’s so unfair. canser really doesn’t discriminate. I don’t talk about this either, cause I’m not sure everyone would understand.

Except Kelly.

And of course there’s the very worst thing…death.

People die. Young, vibrant moms with little babies die. They are full of life and “fight” and are “pinked out”, and they still die. This is the very worst trigger. My heart grieves every loss. The ones I don’t know well, I still grieve. The ones I come to love and care about take part of my heart with them when they are gone. It’s the very worst thing about my new friends and support. Not everyone makes it. I have not been the same since losing Sarah. I see updates on her kids and family and my heart breaks all over again every time I hear about the struggles they continue to face since her loss. I see my own kids. My own husband. My own family and friends. I don’t ever want to be the cause of such grief to the people I love most.

In times when we lose a “sister”, or someone gets mets, that’s usually when Kelly and I meet up. We chat. And then my heart is a little less burdened. We grieve together. We talk out our fears. We try to put logic and perspective to something that makes no sense. It doesn’t change it but it makes it more bearable. Maybe it’s cause somehow this allows us to share the load.

And that’s not to say any of my friends or family have been any less supportive. It’s not more or less, it’s just different.

I guess what I’m trying to say is without Kelly I fear I would have sunk into the abyss a long time ago. She is my constant in a world that is constantly changing. She came into my life and has been an anchor amidst the storm.

My mom has my back. She is behind me, pushing me forward, supporting me in ways that only a mother can.

Phil is my protector. My cheerleader. As we navigate this unknown path together, he is by my side, holding my hand.

As for Kelly? She has my other hand.

And for that I'm forever grateful.

Friday, 26 August 2016

Happy Birthday Luvy

Nov 30, 2015 

What is love?

Love is helping someone up every time they fall, without complaint, and without being asked.

Love is looking at someone with that same twinkle in their eye as when you first met. Even when their body is so changed it’s unrecognizable to them in the mirror.

Love is coming to all the scary appointments while holding your hand, whispering words of encouragement, and then making sure the best beer or wine is awaiting us when we get home.

Love is wrapping your arms around someone as they cry over lost loved ones.

Love is coming home with a pair of melons to make you laugh when you feel like crying.

Love is being a cheerleader 365 days a year.

Love is always having the time to talk.

Love is accepting whatever curveballs life throws our way, then sharing the load of coming up with a plan to tackle the issue, or manage the information.

Love is taking you on a bike ride on a random weekday cause they know your soul needs it. (even knowing you might get mad cause it’s a harder route than they admit!!)

Love is soothing hurts, calming fears and making sure laughter is never far away.

Love is making someone feel like they’ve got company on a path they must walk alone.

Thank you Luvy for sticking with me for another year, helping me to slay my demons, never losing faith in me, and showing me every day what love is.

Happy Birthday xox

Emergency Appendectomy...(not mine!) ...and all that entails...

Nov 29, 2015

Before I could feel too sorry for myself, Andrea – Phil’s sister and one of my closest friends – ended up in the hospital…She needed an emergency appendectomy for an almost burst appendix…It all happened so fast – Phil ended up sleeping at their house with the boys the night she went to get her pain checked out, and then brought them to our house in the morning, where they stayed for the weekend. Andrea ended up having to stay in hospital for 5 days. We are a pretty open family. When I went through treatment, it wasn’t only my kids who suffered. Unlike my kids who had no pre-conceived notions of canser, my nephews knew a kid from their school who died from a brain tumour. They were well aware canser can kill when their mom told them Aunty had breast canser. I think it was hard on them in a different way than it was for my kids.

Remembering how worried my own kids were about when I was last in hospital we tried to keep them as distracted as we could, while making sure they spoke with Andrea and Mike and visited her in hospital. Kaedyn seemed ok but Ryder, my younger nephew, was pretty quiet. We took them to the Christmas market to see the reindeers and all the crafts and music etc. And they all slept in Ethan’s room – 2 in the bunk and 2 on a mattress underneath. I’m not sure how much sleep they actually got but they sure seemed to enjoy it! It was nice to be able to do something for someone else for once…and me not have to be the sick one. My self pity melted away for a few weeks as we tried to help out.

I’m happy to say my nephews weathered Andrea’s hospital stay really well. They were worried of course, but still were able to have a good weekend. Ryder was a more animated after the 2nd time of visiting Andrea when she was more perked up and feeling a little more comfortable.

Later my kids admitted to me they wondered if she would die when she was in hospital. I guess that’s the sad reality they live in – their first experience with sickness was a pretty intense one so now they brace themselves for anything else that has to do with hospitals and doctors, assuming the worst. We quickly got rid of that notion and explained that most of the time when people get sick, the doctors can help and people get better. But I think time is the only thing that will reassure them that what we told them was in fact true. We were almost a year since I was done treatment, and still the kids were being affected by what we went through as a family. (for those who think the impact of canser ends when treatment does, I can tell you differently. So could my kids and my nephews.)

Anyways, thankfully Andrea made a full recovery.

And admidst all this craziness, Phil’s birthday was upon us…

A little moutain healing like only the Rockies can offer

Nov 19, 2015

Losing an animal is a difficult thing to adjust to. Sometimes you don’t realize just how ingrained they are in your everyday routines, and it makes their absence all the more noticeable. Or at least that’s how it was for us. Every time I get home and open the door I expect a furry face to greet me. I am surprised every time there’s not.  Odd things make me cry when I’m least expecting it. The first week was really awful. I didn’t want to be in the house any more than I had to be.

So it was a true gift that months before we won a weekend away at the gorgeous Emerald Lake in B.C. We had won the 2 night stay at the CanSuffer Spin fundraiser in February. It was donated by a fellow teammate – Gordon – who told us “it’s the most romantic place”. We had booked it in September for this weekend, at a time when we thought Daisy would at least make it to Christmas. Now the weekend away was a welcome distraction for us, as was the kids’ planned sleepovers at the grandparents. We’d be out of our house of Daisy reminders, amongst the mountains and trees for a weekend of healing.

I honestly couldn’t leave soon enough on Friday (but had to wait until Phil finished work), and naturally it started to snow on our drive out. By the time we got to the BC/Alberta border in the mountains, some of the highways north and southwest were closed due to bad weather. Our way was still open but the road conditions worsened as we got closer to the resort (and actually the road we took closed a few hours after we had drove through). They got lots of snow earlier in the day, and the roads were icy. I was glad we had decided to take Phil’s truck.

Like my trip the weekend before with the girls, I could feel myself start to relax, even with the inclement weather, as we left the city further behind and drove the highway into nature. The smell was amazing – there’s just something about pine trees and mountain air. The snow made it incredibly romantic. There was already quite an accumulation on the ground but as we drove up to the parking lot, it was snowing just enough to make it look like a movie. It was absolutely beautiful.

At Emerald Lake you park your car a few kilometres down the road from the resort. A bus takes you to your room. I was grinning like an idiot as we boarded the bus with our luggage. The grin just got wider as we saw the gorgeous lake as we crossed the little bridge onto the resort property. It’s really amazing – no cars are allowed so you walk everywhere. It’s like a little pedestrian village. Like something out of a story book. I knew I would love it there before we even set foot in our room.

In our room, which was overlooking the lake, there was no TV and a huge, wood burning fireplace with as much wood as you like! We had a little balcony with a couple of chairs, which happened to be half buried in snow, but we pretty much left the door open anytime we were in the room with the fireplace on. The fresh air mixed in with the burning fire was intoxicating.

I can honestly say it was one of the most relaxing getaways we have ever taken. It was a weekend of doing very little except breathing in the amazing air, snapping pics of the gorgeous scenery, going into the outdoor hot tub and hiking around the lake. Oh and eating their delicious food and drinking ha. On Saturday afternoon after our hike we just hung out in the room reading! I can’t remember the last time we just sat and read! If you are looking for a relaxing, amazing weekend, I would highly recommend Emerald Lake. It’s not cheap, but it is now on our radar for future weekend getaways cause it is SO worth it. There were some kids there, but I would recommend it for a nice adult getaway.

So thank you Gordon for donating such an amazing prize for the CanSuffer event – it was so perfect I can’t even tell you. It started our healing process from a hard month full of loss. It was like for one weekend we were in another world – a reprieve from the grief and pain, surrounded by breath taking beauty in a peaceful, soothing environment.

Because of spending a weekend in that setting, coming home was a little easier. The sharp edged pain we felt leaving the house a few days earlier was now a dull ache. It still hurt, of course, but it was a little more manageable (although the silence was still deafening upon our return...) I think a weekend with their grandparents helped the kids reset a bit too. There were still tears in the following weeks – and heartbreaking conversations at bedtime from missing Daisy – but I think as a family there was a shift in our grief and we were now able to start to process it.

I really believe in times of pain and turmoil you need to follow your gut as to what your heart needs. For us, it always seems to be the mountains that call us. Whatever it is, do what your gut says – it will be different for everyone – but for us it has never led us astray and we always feel in a better frame of mind to handle whatever it is that is on our plate. So I say if it means packing up the family and going camping – do that. If it means a family sleep over in the living room, do that. If it means a quiet walk or some meditation or yoga, do that. 

Time waits for no one, I know, but sometimes I think slowing down when you’re hurting can do the soul a world of good…

….and wine….wine helps too…