Kristal

This site is about my experience with cervical dysplasia, as well as anything else I might feel like discussing!


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Team Underwear Affair: Be a part of something (I hope) will be huge!

Today, is one of those days I struggle, and I won’t say what, or who, may have caused that to happen.  Instead, I am going to focus on something really positive, Team Underwear Affair for the Scotiabank Marathon.  Last year, as many of you may know, I got a team together to participate in the booty hunt.  We had such a good time, and raised a lot of money.  We were hoping to do this again in 2015, but it wasn’t to be, as the event was cancelled.  I decided, after speaking to someone at the Alberta Cancer Foundation, that the next best option was to participate in the 5K walk and run (admittedly, the 15. 6km we walked last year was a bit much for some).  We could still dress up, be loud, and bring attention to cancers no one likes to talk about.  It’s not just about raising a lot of money, but making sure people are comfortable talking about their experience.  I’ve learned that my being outspoken has helped quite a few people!

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Since then, I have been toying with a lot of fundraising ideas, that now seem to be possible as realities.  I’m looking at setting up a floor hockey department fundraiser in the next few months, and tonight I am meeting with some amazing people to talk a bigger fundraising event.  I am so humbled at the offerings of help, some from people I’ve only talked to on Twitter.  I am really keen to learn about fundraising, and how to be a better event planner, so this is a win overall.

As well, there are so many people who have offered to join the team.  I’m not sure what the final total will be, but I’m hoping it’s big enough to catch the media’s attention.  It’s quite sad that the Underwear Affair doesn’t exist anymore, but I do believe it will continue on for some time through the Marathon.  If you are interested to join, or to donate, please follow the link below.

Team Underwear Affair

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Camp, it’s not just for kids!

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This weekend (in fact, my birthday weekend) was spent enjoying the hospitality of Camp Kindle, thanks to a partnership with Survive and Thrive.  You may have even heard about it in the news. As many of you already know from my blog, young adults fall between the cracks in cancer care.  There aren’t a tonne of resources, or support (personal or financial) that’s easily found.  Cancer is often viewed as a disease that affects only the old and very young children, someone in their 20’s or 30’s just cannot be a cancer patient!  This attitude may not seem like much to a normal person, but it’s detrimental when young adult cancers aren’t studied for their specific complications, or there aren’t places for young adults to get away and connect with others like them.

That’s where groups like YACC and Survive and Thrive are critical.  They provide a place for young adults to connect with other young adults affected by cancer.  It doesn’t matter what stage, or what kind of cancer, or even if it’s early days, everyone has a story and wants to connect.  All twenty five of us got to do that this weekend.  Below, is my impression of the weekend.

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The camp started on Friday night.  After setting up our beds, everyone pilled into the “living room” of the Jack Perraton Lodge to talk about what we hoped to create that weekend (as that was the theme, create something).  Soon, only a small group was left, and we sat talking until later that evening.  I love those kinds of conversations, ones that don’t feel forced or contrived, just straight conversation that gets to the heart of a matter.  I found that happened a lot this weekend, we would meet often in that room and just talk about anything bothering us, just “getting” what we were all feeling.  I’ve often said that I feel the one thing cancer does is expose people to a new way of thinking.  The regular bullshit and pettiness of the world is melted away, and what’s left is someone who is honest, but kind, and knows what they want.  Time and time again, that was proven from this amazing group of people.  And they reminded me again that I do belong, and that I can contribute to others healing and wellness, that I am not just someone complaining when I have nothing to complain about.

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There were the usual games, good food (Tim Tam slams), craft time (which is  where the above beautiful card was made for me, along with the picture frame below), and general silliness many of us lack in our daily lives.  It was too cold for most outdoor activities, though people did go out for a few hikes around the beautiful grounds.  It’s still the conversations that draw me back, and remind me how necessary retreats or weekends away from the world are.  I’ve often been told by people that I spend too much time thinking about cancer, and that it can’t be good, but the exact opposite is true, going to a weekend like this I think not only more positively about my pre-cancer, but I actually spend more time being happy surrounded by great people.  We can talk about anything, and no one looks at you weird for talking about “uncomfortable things”.  I really appreciate that the group that runs Camp Kindle reached out to Mike and Bonnie (creators of Survive and Thrive) and allowed everyone such a great, relaxing weekend in a supportive environment.  I hope they keep this partnership in the future.

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I know I wasn’t the only one sad to leave.  Quite honestly, if I could stay there with these people indefinitely, I would have.  Cancer or not, we all just seem to connect, and I think we could make an amazing community, the kind of community the world needs more of (I know, kind of hippy of me, but it’s true!).  I don’t often get to celebrate my birthday with a big group of people, and I was very lucky to this year.  I got hugs, best wishes, and told good things about me, which helped to silence some of those darker voices inside.  I won’t soon forget my 37th birthday, that is for sure!

Again, thanks to everyone involved, Camp Kindle, Cassie, Lisa, Maureen, Mike, and Bonnie!  And remember, if you are needing a stunning venue for an event, Camp Kindle could be available.  It’s how they help fund some of the wonderful programming they provide to young kids, and now (hopefully) young adults.

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Metro News Calgary Article: The Underwear Affair 2015

I was hoping that I would be writing about the 2015 Underwear Affair, but sadly, it has been cancelled for this year.  Instead, we are going to focus our attention on the Calgary Marathon!  We will continue the spirit of the Underwear Affair there, and I will soon be posting about how people can help/participate.

I was able to get Metro to write about the loss, and the future plans.  Hopefully, I can get more news agencies to talk to me, as below the belt cancers need that support to further awareness.  As well, that media support reminds people to get out for their check ups and catch concerns early.

http://metronews.ca/news/calgary/1271578/underwear-affair-is-over-but-spirit-to-live-on-as-part-of-calgary-marathon/

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Do I focus on the worst case scenario?

I was asked recently how often I think of the dysplasia my body is fighting, as it was perceived I spend too much time thinking about it, and it must be affecting me negatively.  That question got me thinking, and the truth is that after two years of going through this, I don’t think about it as much as I use to, which granted was a lot.  I’ve almost become complacent during the six months between follow ups, it’s a time to relax and just live my life, as I don’t have any control over the situation medically.  That being said, I do spend a lot of time tweeting and talking about cervical cancer and pre-cancer, and the reason I do that is to make sense of things.  I’m sure I’m not the only person who’s been affected by cancer who does this very thing, and I’m someone who does better when she knows more than when she knows less (Huzzah for anxiety!).  Let’s say I never allow myself to think about it…..well,  it’s still my reality, something that I need to accept. When I do think about it, I want to turn away from it always being a negative thing and having my anxiety destroy me. I’m tired of anxiety taking away some of my joy in life. Really, this is the one part of my life where I’m an extrovert, as I will gladly share and talk about how this has affected my life.  It’s not that I want attention, in fact I hate it. I just want to feel like I am normal, and talking to other people with pre-cancer or cancer helps me, and I hope I help them too.

When talk about it with others,  I am taking control of the situation through my story and making things a little more positive for myself.  I hope I am educating people that we didn’t ask for this through some behavior, or lifestyle, and that listening to your body can make a difference. I also hope that people become more comfortable with gynaecological words, and don’t flinch when I mention where the dysplasia is occurring.  The best part is when someone tells me that I’ve made a difference, like when I’m  told someone’s daughter will be getting the HPV vaccine, a friend scheduling a pap that they’ve been putting off, or someone speaks up about their condition and no longer suffering in silence, normalizing things for so many.  I’ve seen how this can bring people together in such an amazing way in my support groups, and the love and respect I feel for many of those in the group has made me a better person.

This is the only way I’ve found to be okay with this condition and the procedure last year, and of course I’m not really okay with any of it, but that doesn’t change the reality of the situation.  I can pretend it’s not there, but that just isn’t the truth, it is there and I need to trust that my body has the chance to fight it off for good.  So for those who worry about me and how my choice to be outspoken affects me mentally, you don’t need to, because now when I think about the dysplasia, it’s usually in a more positive way.  And those times my thoughts are darker? I call a friend, or I go outside and exercise, and I don’t let those dark thoughts drag me down.


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November Follow up – results finally in

This will be a quick entry for the blog, as I have been working on another blog post.  My tests came back showing “features”, which means something is still there.  I’ve been told that features are a stage before abnormal cells, so it’s very low grade at this time. I’m not sure what’s happening, if my body is fighting it or if it will progress like last time.  All I know is, that I am sadly getting use to the situation.  I will be back for more testing in May 2015, so maybe we will get answers then?  Until that time, I will just do what I normally do and just live my life as best I can.


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Moving Forward During a Retreat

I’ve been avoiding blogging for some time now, and I’m not sure why that is exactly?  I wrote this a few weeks ago and promptly avoided posting.  Tonight, all the inspiring talk on twitter about Stand Up to Cancer made me realize I need to post more often, and be open about things, like last week’s specialist appointment. So before I talk about that, I should really post last months entry…..

I would never have said I was a girl who would like to be on a retreat. I do love to talk about feelings and emotions, and I love the outdoors, but being stuck in the middle of nowhere with a large group of strangers?!?! That’s just not me….though many of my friends would probably say that is something I need to do, be okay with the unknown. I generally prefer smaller group settings, something that is more on the level of a one on one interaction.

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I am recently back from YACC’s retreat yourself BC, and I have to say it was probably the best decision I have ever made to go on that trip. I owe a lot to a friend who convinced me to come in the role of her supporter, so that I could attend the event. It was a very last minute decision. I know the term “gets it” is over used, but let’s be honest, we want people to “get” us, so that we feel normal again. We want to feel accepted, safe, and that people care about our wellbeing. That is what I got this weekend. Acceptance. Friendship. Kindness. I could go on and on, but I won’t bore you with those kind of details (yet), instead, I will go into this idea of acceptance. Whether it’s friendship, dating, family, etc., relationships make our world. These relationships provide comfort, a sounding board for crazy ideas, and they listen to our shit (that is a skill that so few people have as we are all fixers!). Currently, my family life isn’t what you’d call healthy, my dating life is well…..there’s not a lot going on there, so it’s friends that provide the support, companionship, and love that I need. It’s been a difficult year as many know, and I would say for most of it I was lost, alone, and very afraid…that is until I found a cervical cancer support group.  I also found Localife, and made so many good friends there, but I still felt like a bit of a fraud in comparison to the people in these groups as I was dealing with an aggressive pre-cancer, not cancer itself….but they funny thing is that I identified with them so much more! They understand the constant doctor’s appointments, the biopsies, the fear, all the bad things that come with a dealing with any type of cancer. For example, this weekend, I got to talk about how one dates when you are dealing with cancer (when do you tell them? First date? 12th? Never?), how one deals with physical and emotional side effects, and even simply, how does one feel desirable in any way at such a vulnerable time? No one ever told me I was a fraud, or that I didn’t belong, and it made me think that maybe we need to spend more time caring about each other, and not so much time trying to pigeon-hole people into constrictive definitions. That way, we might not feel so alone and less deserving of support when we go through a difficult period in our lives.

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This isn’t to say that my diagnosis is the same as everyone in the community, as it comes with it’s own unique circumstances, but that is true of any cancer diagnosis really. What it means is that I just feel a lot less alone. I feel a little more capable of handling my future, and that maybe I can  move ahead and work on things I want in my life. I really don’t know what that entails right now, and I don’t have to make the decision today. I do know one thing though, it involves wanting to make more connections with people, both friendship and romantic wise. It’s more being open to any opportunity that might present itself, but also just being okay with what I have now.

That, I haven’t laughed so much in a weekend in all my life! It felt so good to laugh at the same time that you were facing your reality.


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Meeting the Texas 4000 – Charity bike ride participants

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I’m normally someone who isn’t comfortable with unplanned events, but last night might change that view.  I was leaving a friend’s apartment, when I remembered that another friend had mentioned an event going on involving something called Texas 4000.  I had no idea what this event was about at first, and even when I arrived at The Yardhouse I was still very unsure what was going to happen.  By the end of the night though, I wondered how people haven’t heard of this inspiring charity bike ride, or the amazing people who are taking part in this event.  They will ride from Austin,Texas to Anchorage, Alaska, riding about 75 miles a day on average, to raise awareness and money for various groups like YACC (Young Adult Cancer Canada), M.D. Anderson Center, etc. 

The one thing I find with anyone’s cancer journey (not a fan of that word, but what else do you call it?) is that it’s hard to reconcile the positives that come out of it.  How can something that destroys lives, and causes so much pain ever be good?  I’ve met some amazing people that I would never have otherwise met, made good friends fast, and I know they are people I will speak to again and depend on in the future. I’m constantly astonished that there are so many people in this world selflessly giving up their time, and putting themselves through grueling conditions to benefit not only people they know, but also people who are total strangers. As I just mentioned, each participant has a personal connection to cancer, grandparents, friends, etc.  I won’t go into their individual stories, as they are not my story to tell. One participant though, told a story about riding for his father, who had himself been an avid cyclist before cancer, and it overwhelmed me so much to hear about such love and connection (his bike contains parts from his dad’s bike so they are riding together!).  The talk never stayed solely on cancer, or even the ride, as we all seemed to have a lot more in common, and really they were all fascinating people. I’ve noticed at the YACC events I’ve attended that we don’t sit there and only talk about the disease, but instead we just talk, about our lives, friends, likes/dislikes, etc.  Cancer has become a part of our life, but it’s not the only part…..or even the major part, it’s just something we have to accept as a reality.  We all stayed out pretty late, enjoying good food and conversation.  I learned more about Tennessee vs. Texas country, and I taught someone about my love of early civil war photography.  Those of us who are a part of YACC also got to show the riders what their donation and hard work is going to help, and how the group provides us with so much support and long lasting friendships. 

I’ve provided links below so you can learn more about their epic bike ride. This ride goes on every year, but with new participants, as it takes up 18 months of each rider’s life from start to finish.  They will arrive in Alaska on August 8, 2014 to a huge celebratory event, and probably some much needed R&R.  If you are ever concerned that your donated money often goes to high overhead costs, look toward donating to the Texas 4000, as they often support smaller, and more local support/research groups.

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