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A walk down memory lane - My steps through colorectal cancer advocacy

BY SUZANNE LINDLEY | MARCH 14, 2012

Most of my life I wasn't even aware that colorectal cancer existed. At 31, that innocence vanished and with it began my journey into the world of stage 4 colon cancer. Only one chemotherapy existed then and it wasn't expected to do much good. I was fortunate to find the ACOR (ACOR.org) listserv and another survivor, Shelly Weiler, who encouraged me to begin treatment. I did. I have since benefited from the research that was rampant for colon cancer. New drugs were developed and I received them first as single agents (one at a time) and then in the varying combinations that are used today. My tumors were responsive and slow growing at first.

Research stagnated and my luck changed as the tumors in my liver began to grow uncontrollably. It seemed that nothing could stop them and we were fortunate to find out about radioembolization, or SIR-Spheres, which shrunk my tumors and allowed me to begin systemic therapy once again. Friends knew of my journey and I began to hear about the power of advocacy. Timid and quiet, it was foreign to me. But as I watched others making creating change I felt like I should, too.

In 2006, I joined One Voice Against Cancer to take colorectal cancer awareness to Capitol Hill for the first time and at the same time discovered Fight Colorectal Cancer (fightcolorectalcancer.org). I was terrified that trip and spent much of the training in tears. There were other wonderful Texans that took me under their wing, though, and helped me to share my story. I had the opportunity to meet my representative during that trip, Jeb Hensarling, and to share that I was able to stand on the Capitol steps and walk into his office because of research. I told him I wanted to watch my daughters grow up and that without more research, I wouldn't be able to do that. When I left, I knew my words had made an impact.

Our stories make a difference. No one should experience the helplessness and hopelessness of colorectal cancer. It is preventable, treatable and beatable. Taking action is easy: fightcolorectalcancer.org/policy/take_action_this_march. My story makes a difference. Your story can make a difference, too.

So I challenge you - be the difference!

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COMMENTS

Suzanne,

Mark and I wouldn't be here had you not shared your story! I'm so thankul that you did and that you have inspired us to share ours.

The differences we all make together are incredible! Great post!

Rach
- Posted by Rachel Spague 3/15/12 12:30 PM

I'am a stage three colon cancer survivor from sept 2005. I choice to participate in a research program but unfortunately was to sensitive to the meds and couldn't continue with the research after recieving 8 of 12 treatments of chemo in a six month period the drs thought I had gotten enough. In Oct. of 2007 I had a reoccurence in the pelvic area so after 31 treatments of radiation along with another 6 months of chemo I have been colon cancer free. But in the spring of 2010 I was found to be anemic again and then started having abdomen and intestinal pain after many test a 1cm mass was found in July but further testing and even a mri in Nov found nothing. In Jan of 2011 I went to urgent care after several days of pain and had a ct scan that showed a 3cm mass after surgery I was found to have a twisted bowel and the mass was cancer (small bowel cancer) which is very rare and it was treated with the same treatment you are given with colon cancer. I finished another 6 months of chemo in Aug and I'am doing very well. I'am so glad and very blessed to be here to tell people to be screened because Colorectal Cancer is Preventable Treatable Beatable!!!
- Posted by Deanna Wolfe 3/15/12 1:51 PM

Deanna,

Thank you for sharing your story! What a powerful journey; inspirational. I'm glad you are doing well!

Suzanne
- Posted by Suzanne Lindley 3/15/12 4:43 PM

Rach and Mark,

I am grateful for your friendship! The experiences you have shared and the triumph in being NED (no evidence of disease)after both lung and liver mets gives many hope!

Love,
Suzanne
- Posted by Suzanne Lindley 3/15/12 5:37 PM

Suzanne, because of you, and the help you gave me, I am alive and an advocate today! You inspire me to live and serve others. We have walked the Halls of Congress together, had lunch at Denny's, painted angels, cried about people we've lost to cancer, grown kids up, gone to gala events and sat in pj's and ordered room service. All because you offered to help me deal with colon cancer and take one of the worst things and squeeze something precious out of it! Friendship! Love you, Jean
- Posted by Jean Di Carlo-Wagner 3/17/12 12:21 AM

Hi Suzanne - so grateful you are still out there fighting the good fight! I'm back in hyperbaric treatment for late stage radiation effects - this time a fistula of the bladder (urologist saw a mass, thought it was a new cancer, turned out OK). Thank you for all you do and that you keep us informed! As always, you are in my prayers! :)
Deanna - you've had a courageous fight - in some ways like my own - very glad you were receiving radiation in 2007 rather than the stone age of 2002 like me! I will keep you in my thoughts and prayers!
- Posted by Pam Gravlin 3/17/12 9:43 AM

Pam, It's GREAT to hear from you though I'm sorry to hear about the radiation effects. If you feel like sharing, please email me as I'd like to hear how you are doing. I've had several hyperbaric oxygen treatments myself but they were non-healing wounds. I hope the treatments go well and that you get some relief.

It has been too long since we last talked! Thinking of you!!
- Posted by Suzanne Lindley 3/17/12 9:40 PM

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