Tuesday, November 20, 2012

Living in the Cancer Community

I discovered the young adult cancer community about 2 years after my diagnosis. Still not sure what took me so long considering I was looking for some type of support group for the entirety of those 2 years, but I suppose it came at the right time for me. And when it came, wow, the support poured in. 

I found First Descents first, and I still find it funny how I came across their website. My google search was very deliberate... I Googled "cancer and whitewater kayaking" and FD immediately popped up. I was shocked and totally thrilled to find a way to learn to whitewater kayak for FREE! I think it's funny that I came for the kayaking and stayed for the people. As you can see in the pic, we had a ton of fun at that first camp in Colorado back in 2010 (I'm on the far right). At that camp I also learned about Imerman Angels and as soon as I got home I signed up to be a mentor.

The next year came FD2 in Montana. The main difference in that camp and the first, to me anyway, was that I became closer with people. That mostly happened because unlike the first camp, I wasn't as busy trying to work on myself. I had sorted through a lot of my cancer-stemming emotions and I believe I became a more "whole" person again. Except for the organs I was (am) still missing of course. Johnny (seen with me below) and Clicks were probably the two people I connected with most on that trip. They have both become really great friends.


Then this past summer I was fortunate enough to attend an FDX trip in Idaho. This trip was extremely different that the previous years. Cancer was hardly mentioned and the level of difficulty was much much higher. While I love kayaking, it is probably safe to say that I about hit my difficulty level on that trip. But again, friendships were formed and strengthened and I would say even transformed to that of family.


I was also fortunate enough to be able to participate in the Colondar, the annual Colon Club calendar that has survivors show their scars to raise awareness. I spent a whole weekend on Lake George in New York just hanging out with other colon cancer survivors and it was such a blast... it was my first time to meet another young person with colon cancer and it really meant alot.

(December 2012)

I've also been to Lynch Syndrome workshops with Lynch Syndrome International and Myriad Genetics where I met other families with Lynch Syndrome for the first time. I've even been able to speak at some seminars and share my story which has been so healing and empowering. Then there are the numerous groups and communities on Facebook... it's endless.

All of that to say that the cancer community has been invaluable to me and I would never change that experience for anything. I saw the undying support as everyone at our FDX camp unanimously tried to think of the best way possible to pay tribute to Johnny who at the last minute couldn't make the trip due to chemo treatments and a death in the family... this is what everyone came up with:

(This was the last day... we through the rocks into the rapids before we left the river.)

Now for the "but"... and this "but" is simply a question. Here lately I have been wondering how much is healthy and at what point does involvement in this community begin to have a negative effect? I would never ever walk away from the friends I have made there, but I have been wondering if there should come a time when involvement in the groups should be scaled back. After having cancer I think we are all left with a sense of fear and worry, sometimes even anxiety, about the future and annual scans, etc. Now, being involved in community can absolutely help with that... being able to talk it out and express yourself. But as of late I have noticed that my anxiety has increased some and I notice it heightening when I see stories of new diagnosis, people passing away (not people I even know), and treatments not working. I think it is different when you are listening to a friend tell you about their cancer struggles, but when you see comments in mass online from unknown people ALL the time, mostly sad gut-wrenching stories, it can become hard I think to process it all. 

I would love some feedback on this... until then, I will reminisce about my "out living it" experiences :) 

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"Life's journey is not to arrive at the grave safely in a well preserved body, but rather to skid in sideways, totally worn out, shouting..... 'WHAT A RIDE!'"