“There is no greater agony than bearing an untold story inside you.” – Maya Angelou

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Showing posts tagged with “Colon Cancer”

Thoughts from a Patient Advocate at ASCO14

Author: Molly Lindquist
Jun 04, 2014

Scott and I spent this past weekend at the American Society of Clinical Oncology annual meeting in Chicago. It was amazing to see so many oncologists and researchers in one place. It was even more exciting to see some of the researchers who have crowdfunding projects on Consano. Dr. Robert Doebele of University of Colorado was there presenting his lung cancer research, Dr. Kimmie Ng of Dana Farber was there for Colorectal Cancer, Dr. Don Dizon gave a talk about survivorship in gynecological cancer patients, and we got to see them all in person (versus our usual Skype, email and calls)!

It was nice to see a representation of patient advocates at the meeting, particularly on Sunday, National Cancer Survivors Day, as many patient advocates (like myself) are also cancer survivors. Or have been a caregiver to a family member with cancer. Or have lost someone they loved to cancer. Or all of the above. I participated in an interesting patient advocate focus group that gave me the chance to hear what other organizational leaders are doing to make sure that patients are a part of the conversation in the evolution of cancer care.

I also had the opportunity to meet up with friends from other organizations who are doing what they can to make a difference in the lives of patients — so there was a lot of catching up and laughing. We met a lot of wonderful researchers doing innovative work in a wide variety of areas of cancer, so stay tuned in the coming months for some great new projects. 

The biggest highlight: spending time with Scott on our 10th Anniversary Weekend. Did we ever anticipate that we would be spending this milestone at a cancer conference? Nope! But life has a way of doing that, of taking you down a road that you never imagined you'd travel, but that you certainly need to be on. Cancer showed us to have gratitude for the simple fact that we were able to spend the day together. Of course, we're not ruling out more tropical locales for future anniversary celebrations….

 

 

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Colon Cancer at 24

Author: Shannon S.
Mar 04, 2014

2002 started off with a bang. I was twenty-four, living with great roommates, planning a trip to Hawaii for my best friend's wedding, and I had met a guy. A great guy! We started dating the first week of the New Year, and I remember thinking, this is an awesome way to start the year off.

At the end of January, I went to donate blood but the Red Cross refused to let me donate as my iron count was too low. I had been a regular donor for two years through my employer's blood drive, but now I was being told for the third consecutive time that they would not allow me to donate.

A few weeks later I headed into my nurse practitioner's office to find out why my iron was low. She couldn't find anything to explain it, but one test had come back inconclusive so she recommended I see a colon/rectal specialist. I looked at her like she was a crazy woman, but she kept saying, "it's probably nothing, but there could be hemorrhoids…just go, and get this checked off your list so you won't have to worry about it." I'm a rule follower, always have been, most likely always will be, so I listened and went to the appointment. 

The colon specialist I saw was very nice and immediately put me at ease. I was comforted hearing him tell me that it was most likely nothing. He did a short scope, found nothing and I thought, "Okay, I'm done. Nothing's there." Then he said ever so nonchalantly, "I think we should do a colonoscopy… just to be sure." My immediate response was, "Are you kidding me? No!" Fifteen minutes later I walked out of his office with a procedure time and prescriptions for the prep. 

At the colonoscopy, I was nervous, but not because I feared they'd find anything, I just wanted it over and done. When I woke up I remember seeing the doctor and my mom standing at the end of the bed. The doctor was somber and my mom looked like she was going to be sick. I was groggy and he said, "Shannon, we found a tumor. It's about the size of a golf ball. I won't know for sure until it's removed but it appears cancerous." 

Two weeks later, on April 2, 2002, I had surgery to remove the tumor, and I was diagnosed as having Stage III Colon Cancer. Once I recovered from the surgery, I started a 7 month course of chemotherapy which ended on December 19, 2002. 

As cheesy as it may sound, I've been able to see the blessings that came from surviving cancer. I know with absolute clarity that life is too short to waste and everyday I strive to not take life for granted. I try not to hold back and to enjoy life's moments, especially the small ones.   

That guy I had started dating? He is now my husband and the father of my two boys and has been with me every step of the way. I wonder sometimes if cancer hadn't come into my life if I would be in the same spot in life as I am right now. I definitely wouldn't change a thing.

My hope for anyone dealing with a serious illness is to be provided with information, options and, of course, a cure. To me, the unknown was the biggest "monster in the closet." To have been provided with more information on what, when, why and how instead of "we don't know yet," and "time will tell" would have made a huge difference. I hope for more clear cut preventable measures so that my boys will not have to venture down this scary road.

In one word, medical research means hope to me. It means someone is continually striving to find the answers to the unknown. And hopefully, when those answers are found it will keep more families, friendships and lives together. 

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