Team Triathlon 2016 – UNITED BEHIND A CURE

My alarm went off at 3:30 this morning.  I was not expecting what ended up being my first thoughts.  They weren’t of me running the run leg of this morning’s Spring Sprint Team Triathlon per se.  Instead, intermingled with run thoughts were also thoughts of fellow colorectal cancer (CRC) survivors I know who currently aren’t doing too well. Survivors I know that aren’t physically able to run right now. Those were the thoughts that hit me right after I opened my eyes, getting up early for the race.

My thoughts immediately shifted to a fellow CRC survivor and advocate Debbie Jett. She is an AMAZING advocate in the CRC world. Her story and advocacy have been covered by newspapers. I first met Debbie via the WunderGlo Foundation.  She has run races of various lengths all the way up to a ONE HUNDRED MILE ultra-endurance run – on behalf of CRC survivors physically unable to do these runs themselves.  She takes photos and video along the way to give them a front row seat and sends them the race medals afterwards. That is one of the absolute coolest advocacy projects I know of, what an incredible idea she had!

As I laid in bed unexpectedly first thinking of fellow CRC survivors, then of Debbie Jett’s advocacy – for the first time it fully sank into me why Debbie does what she does. I got it.

As I went through my morning routine, I couldn’t shake these thoughts out of my mind. The two previous team triathlons I have done post-Stage IV CRC diagnosis (all organized by my oncologist Dr. Tony Reid at the UCSD-Moores Cancer Center) were run for me – in addition to hoping to inspire others. To show myself I could do it. But both of my previous team triathlons were run before I was fully integrated into the CRC patient world – things felt very different this time.

Inspired by Debbie Jett, while I drank my morning coffee I began to write out the names of fellow CRC survivors who I personally knew were not doing well right now. Survivors that couldn’t run. Some survivors where even walking across their house is currently a significant physical achievement. The list kept getting longer & longer. I was working hard not to accidently leave anyone off it. I wanted to carry the list with me on the run.

There are a number of online communities for CRC patients/survivors & caregivers. There are the largest ones affiliated with advocacy organizations. I participate in all of those. Then there are countless smaller grassroots ones. They are truly countless, an indicator of how great the need is. I actively participate in a number of those as well. I can’t come close to participating in all of the groups, there are only 24 hours in the day!  But there is enough cross-group participation, that with my community memberships, I think I get to know & witness a pretty good proportion of online CRC survivors at any given time.

It is an amazingly large number of people whose lives have been shaken to the core by CRC. And these are just the subset of survivors who chose to participate in online forums.  An online subculture running parallel to “everyday life” that most non-survivors have no idea exists.  These member-only websites are a “grey web” just below the surface of the web of everyday life. And it is big.  I couldn’t imagine being a cancer patient pre-internet – these groups are incredible resources for bonding, information, advice & support. But since their members span the range from the newly diagnosed, to the cured, to those in hospice — being a part of them exposes you to a number of people in poor health. So as I wrote out my list of CRC survivors that I know are struggling with either disease or treatment side effects to carry in my pocket, the list got longer & longer.

I realized the list of struggling survivors was becoming unmanageable… So I stopped writing individual names. I kept that started list but I now instead added to it the names of the online communities (those both affiliated with an advocacy organization and grass roots) that I participate in on a daily basis… Because I believe in them all and I wanted to capture EVERY survivor in them that was physically unable to be running there alongside me.  As you know a major cause for me is CURE research, so I also added the Cancer Research Institute, Fight Colorectal Cancer & the Wunder Project to the list – since their direct focus on cure research work will hopefully reduce the need for future lists along these lines!

So for today’s run, I ran for the members of: Blue Hope Clinic, Blue Hope Nation, Colon Talk, Colontown, Colorectal Cancer Survivors Unlimited, Immunotherapy: Cancer Cure and Wunderglo Chat.  I am an active member of all these online communities – I ran on behalf of ALL of them and EVERY member of them who is currently struggling.

I work with so many online support & advocacy groups because they all have their own role to play to support CRC patients & caregivers (myself included, I couldn’t imagine being a patient without them!).  Previous years I wore a “Cancer Survivor” T-shirt on the team triathlon runs.  A message which is focussed inward. Looking at that LONG list above of support groups and cure research organizations I now feel a connection to, I very intentionally wore a CRC advocacy shirt for the run with this written on its back: UNITED BEHIND A CURE.

Team Triathalon 2016 Team Triathlon - United Behind a Cure Run

The Triathlon

I loved that a good friend of mine who is also currently under chemo treatment for Stage IV CRC did the biking leg of the team triathlon.  That is her in the top picture with me.  Stage IV CRC unfortunately hits every age group!  The other photo is of me running proudly with my “UNITED BEHIND A CURE” CRC advocacy T-shirt.  Yes, I did beat the 10 year old girl next to me in the photo – but I can neither confirm nor deny how close the race was. 🙂

The run itself was a success. My pace wasn’t my fastest (chemo did impact that) but I accomplished my goal of running it without any breaks and even running a pace faster than I expected! Being able to accomplish this while doing a pretty harsh chemotherapy like FOLFIRI made me feel great on a personal achievement level and I hope it inspires others. I was especially invigorated as my entire family cheered me on with home-made signs!

I ran this race for me (5-FU FEET & FOLFIRI FATIGUE BE DAMNED!) and I also ran it for everyone who could not run it for themselves. I thought of my online forum friends and fellow CRC survivors the entire run.  Debbie Jett and her incredible advocacy? I now truly get it.

2016-05_Tom Run_Finish Line

I already wrote that this run was to raise money for a GREAT idea CRC clinical trial idea at UCSD that I hope to participate in myself. But upon waking up this morning, I realized this run was also for so much more. Including its various translations, this blog gets tens of thousands of hits per month in >130 countries worldwide. Between this readership & all the online communities I mentioned above… It may have been a relatively slow run, but I ran it for each and every survivor I am connected with including those of you reading this right now.

The picture below was the starting line for the triathlon.  Fellow CRC survivors were all I thought about during the run – connected to me via so many online groups, organizations, and this blog.

All of us UNITED BEHIND A CURE.

Team Triathlon Start

9 Comments on “Team Triathlon 2016 – UNITED BEHIND A CURE

  1. Thank you for all you have done, and all you WILL DO in the future, for the crc community. You are one-of-a-kind and we are so lucky to have you in our corner!

    Liked by 1 person

  2. Thank you for your open heart, your caring words, your energy, your effort and your love for every one. I learn so much from you every day and it is with utter gratitude that I celebrate you and your life. You are a dear heart. Thank you.

    Liked by 1 person

  3. Thank you for all you do for us! You are truly inspirational! I’m not a runner but I feel I could run after reading your post! God bless you,

    Liked by 1 person

  4. Thank you Tom for thinking of all those fighting CRC. I told Jim you made it and he was proud that he could mow our large lawn this weekend. That was his “win” after just having his last treatment Thursday! You two simply amaze me and for that I’m very grateful for your determination, stamina and for reminding us caregivers that each day is a gift. God Bless you!

    Liked by 1 person

  5. Pingback: True Faith (FAVORITE POSTS OF 2016) | AdventuresInLivingTerminallyOptimistic

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