A special day for my sister and her fellow MS Survivors.
My sister Kim has been debilitated by MS. She also has Familial Adenomatous Polyposis (FAP) and Desmoid Tumors. One heck of a disease trifecta. It pains me to think of all that she has to go through on a daily basis and will continue to have to do for the rest of her compromised life. Anytime I’m having a bad day, I don’t have to look far for someone who has it much worse than me. I instantly remove my head from my arse, pick my chin up and forge on.
This was a wonderful day. The sun was out, temps in the 70′s and MS awareness orange was everywhere. It was so inspiring to see MS Survivors aplenty, their families and caregivers. MS Survivors of all ages with their walkers, wheel chairs and canes storming the walk.
Kim’s team, Born To Survive, consisted of my mom Jolane, stepdad Tom, niece Cassie, Kim’s husband Rob, friend Julie and her husband Terry. Oh yeah, and me. One heck of a support system/team.
Even though the day wore Kim out, I could tell it was a monumental day for her. I believe the fact that such events exist, very much offer inspiration and hope to MS Survivors. And very much so to their families, friends and caregivers. Thank you Walk MS for hosting such amazing and crucial events.
Kim, I love you so much and am praying with my everything that the day our world is free of Multiple Sclerosis comes very soon.
A walk with two amazing Suvivor Sisters.
I was so thrilled to be able to get to the Colon Cancer Alliance St. Louis Undy 5000 5K this year. For a very special reason. I got to see two incredible Survivor Sisters cross the finish line together. Said Sisters would be my sister Kim and my very good friend Julie. Kim is a MS/Familial Adenomatous Polyposis [FAP]/Desmoid Tumor Survivor and Julie is a Stage 4 Colon Cancer Survivor. Two amazing and inspiring woman who are true Survivors. Warriors even.
For Desmoid Tumor and FAP Warriors.
I looked forward to this weekend so much. A huge part of the ride. I had arrived in Philly for The 2012 Annual Desmoid Tumor Research Foundation(DTRF) Patient Symposium and Running For Answers(RFA) events. A weekend of getting the latest information about Desmoid Tumors and Familial Adenomatous Polyposis [FAP], connecting with fellow patients and being able to take in some of the historical sights in Philadelphia.
My mom and I went to the 2011 events. It was an incredible time. It was the first time we had connected with other patients and their families in our entire history of these two rare diseases. My mom was able to have conversations with other mothers of children who have Desmoid Tumors and FAP. She had never had an opportunity to do such a thing in all the years since my dad was first diagnosed with FAP back in 1974. For her to share stories and information with other mothers was a true gift. For me it got me out of my Desmoid Tumor/FAP bubble. I had never met any people in person who shared these two rare diseases. It very much fueled my ambition to make this ride happen and succeed at getting awareness for Desmoid Tumors and FAP.
2012 was a huge year for these events. My mom and my sister Laurie, who also has a Desmoid Tumor and FAP, met me in Philadelphia. The DTRF managed to establish an amazing line-up of doctors, researchers and speakers at this year’s Patient Symposium. And, the RFA Run/Walk increased the number of participants significantly. Oh yeah, and there was a certain Rosie in the crowd. Yup, you guessed it, Rosie O’Donnell. Rosie’s new wife, Michelle, was diagnosed in 2012 with a Desmoid Tumor and had surgery to remove it. Having a celebrity committed to the Desmoid Tumor cause definitely can’t hurt getting Desmoid Awareness out to the masses.
I would like to thank Desmoid Tumor Research Foundation co-founders, Jeanne and Marlene, for seeing the need for a organization dedicated to raising funds and awareness for this mega-rare disease. They have committed themselves to establishing, maintaining and making the DTRF grow and grow. My fellow Desmoidians have very much benefited from the efforts of the DTRF. And will continue to.
The 2013 events cannot come soon enough.
My time as an Ambassador.
This past week I spent a few days being a Ambassador for Right Scan> Right Time. I was one of 40+ Ambassadors, most colon cancer survivors, who stormed the Hill to meet with Representatives to tell them our stories and drive the point that medical imaging is incredibly important and that they should vote NO on any future spending cuts to scans in the future. The Right Scan at the Right Time is crucial to catching cancer and other diseases early before they progress. Thank you so much Erika Hanson Brown(Founder of Colontown) for inviting me to participate in such an amazing event. I also met so many wonderful people. Many of them colon cancer survivors. Truly inspiring you all are.
Experiencing the healing powers of fly fishing.
I had been very much looking forward to participating in this 3 day retreat that promotes the healing effects of fly fishing for men who are surviving cancer. I am so thankful that Stan Golub, Executive Director, showed interest in my ride and wanted me to be a participant in one of the retreats.
The Mackay retreat worked perfectly into the ride schedule. Besides being in a beautiful setting, a few of the Reel Recovery board members were there. Oh yeah, and PBS Idaho was there to cover the retreat. They will be airing a show featuring the retreat next February.
It was incredible connecting with my fellow eleven retreat participants. Twelve men sharing how cancer has impacted their lives was simply amazing. Men from different backgrounds bonded together by two common elements, cancer and a love for fishing.
Not all of us had a personal knowledge of fly fishing, myself being one of that set, but by the end of the retreat I think there were twelve additions to the fly fishing club.
Each retreat participant was teamed up with a buddy/guide. The buddies are volunteers. A truly wonderful group of men that admirably so giving of their time and knowledge. My buddy was Tim. It was his first time being a buddy. He was amazing. So patient with my lack of fly casting skills. I have been a fish head my entire life. But, I have been a spin fisherman. I had to unlearn my spin fishing ways when tackling fly casting.
Tim definitely knew what he was doing. He put me into some beautiful cutthroat trout. When I caught my first trout, I think he was even more excited than me.
At the end of the retreat each buddy gave their participant a box of flies with a note written inside. The fly box box included two flies that Tim had chosen, which I caught some nice cutthroat on. When he gave the box to me, I got all choked up and got more than a tad misty. I think all the emotion built up during the 3 day retreat came out, in spades. Thank you so much Tim. And I definitely want to find myself in Idaho again. So we can take land some more cutts on the Lost River North Fork.
I would also like to thank all the guys from Reel Recovery for a truly amazing experience. A life altering experience. I can’t say enough about how much all the work and passion you have put into this organization and the retreats you host. You have positively affected so many men’s lives. Men that have had to endure a life with cancer. From the bottom of my heart, thank you.
Oh yeah, and thank you for giving me yet another condition, fly fishing. I’m hooked.
I encourage everyone out there to go to the ReelRecovery.org to check out in more detail what they all do. And click on the donate button. They could use whatever you can give to continue putting on these amazing retreats. Also, if you know a man with cancer who likes to fish tell them about Reel Recovery. They could be a participant at one of the retreats in their area.
There will be a blog post dedicated to specifically to this retreat, which will contain video, photography and more information about the retreat and Reel Recovery.
My tour of an incredible healthcare facility.
I rode thousands of miles and endured days of 100+ degree temps to get here. City of Hope(COH) was the first destination I thought of when I first came up with the idea for this ride. My dad was treated here for the last 4 years of his life until colon and other cancers took his life in 1978. I was fortunate enough to be taken on a tour of COH by a wonderful woman by the name of Bridgette. Thank you Bridgette. I was also surprised by Doctor Sanchez wanting to talk with me about Adenomatous Polyposis (FAP). The rare genetic disease responsible for my dad’s colon cancer and has continued to curse my family. Damn FAP. I shot video and photography of the tour and my conversation with Dr. Sanchez. That is to come when I have the time to edit the video footage.
If you are in the Los Angeles area and require treatment, I encourage you to contact City of Hope. And amazing facility indeed.