When I was in Washington for NBCC Advocacy Summit, in one of those serendipitous "life episodes" I received an invitation for a luncheon being held by the Cancer Support Community. You know how the saying goes, "timing is everything?" In this case, not only was the timing perfect, the location was ideal. I was already scheduled to be in the very building where this luncheon was being held. The topic was perfect.
"Meeting The Needs of The Whole Patient in Cancer Care"
In addition to an outstanding panel of speakers and visits from a number of congressional representatives, it was a delight to meet the president and CEO of CSC, Kim Thiboldeaux, whose passion for her work is immediately obvious from that first second you meet her. She was at the door personally greeting each of us as we arrived. Every speaker was exceptional but no one touched me more than Janice Paul, an ovarian cancer survivor whose story had me blinking back tears and swallowing that lump in my throat more than once during her time at the podium.
I'm not sure I understand when OR how I've morphed into a bundle of blubbering emotions, but most definitely, I have. It certainly seems as though I've shed far more tears in the years post active treatment than I did in the months prior. With the exception of the day I got that letter when I wailed like a baby for two solid hours, I don't remember shedding many tears in the months leading up to my diagnosis, the day of my diagnosis, the night before my surgery, the morning after my surgery, two days before chemo when I went to get a haircut (figured the next time I'd be doing anything with my hair it would involve a buzzer--which, for what it's worth did NOT happen as I did NOT lose my hair because I had That Fraud Chemo.... Kept my hair, Lost my brain, but the hair, oh the hair... that was of primary importance).
I suppose when I was actually In Those Moments, it was necessary for me to shelve my emotions so I could be an empowered patient. It was important for me to be present. I simply had to allow my brain to rule the situation. My heart had no place in this maze. I couldn't make decisions clouded by emotions. I know I'm good in a crisis. Mine or someone else's..... it's after the crisis that I reflect back and just fall to pieces. And when I say fall to pieces, I'm talking walking around completely dazed, unable to function, almost catatonic. No kidding. Crisis fallout. Perhaps also known as Post Traumatic Stress Disorder?
I'm five years post chemotherapy. My gummies just celebrated their fifth birthday nestled inside my body where my breasts once were. My ovaries are in a medical waste landfill somewhere. My brain makes a guest appearance every so often. This can be more than a bit troubling most of the time. Sometimes, however, I'm pleasantly surprised. On occasion, I'm elated. The elation is usually the result of something I COMPLETELY forgot about......
This falls under the elation category. I tend to get lost on the internet. I follow one link to the next and sometimes, I crash into something great. This is great. Why? For starters, it's the Cabbage Patch Doll syndrome. Too young? OK. It's Tickle Me Elmo. Still don't get it? OK. O.KAY. I like being in on the ground floor. And, apparently, I was one of the 1043 initial participants in The Breast Cancer M.A.P. Project. Mind Affects the Physical. This past October, the inaugural report was published.
This is an ongoing project and it's one that I am encouraging anyone who is willing to share their experience to do so by joining the registry. This initiative is listed in ClinicalTrials.gov and it's also included on BreastCancerTrials.org in section on their site dedicated to web based studies. In other words, it's not just some group looking for random information. Cancer Support Community has enlisted some of the brightest minds to find the best possible ways to support us. All of us, the breast cancer club hoppers.
Poke around the website. There's lots of information and there are plenty of ways to seek support. There are online groups in addition to discussion boards. I participate in a weekly session which lasts 90 minutes. My group is not exclusive to breast cancer. It's facilitated by a social worker who is spectacular. They are doing some great things at CSC and WE can help make it better.
Join the registry. These words, straight from that inaugural report, let's just cue the emotions. My answers helped provide the first glimpse into the minds, hearts and souls of what it means to have breast cancer, to live with breast cancer and to fly without a net when active treatment is complete if we are fortunate enough to exist in the land of NED.
Be a part of something so much larger than yourself...... This is WHO you are when you choose to participate....... This is HOW you are viewed by those who realize Cancer Ain't Easy and it sure Ain't for the Faint of Heart.
"This project, the first of its kind, is a collection of more than 1,000 survivor voices who shared their deeply personal emotional, physical and social experiences with breast cancer . These survivors are setting the framework for better care by arming researchers, policy makers, advocates and others in the cancer community with insights into the impact of breast cancer from diagnosis throughout the survivorship continuum . We owe an enormous debt of gratitude to these registry members who summoned the courage, commitment and candor to answer our call-to-action and share insights that have the potential to change the course of breast cancer survivorship."
Before I roll tape here...... Just want to mention if you are in the Chicago area, stop by Gilda's Club on May 31st and meet Kim at the CSC book launch, "Reclaiming Your Life After Diagnosis" (and no, this is not a paid advertisement!!!! Nor was it coerced.... although, I'm guessing if you are a regular reader of this blog, you might already suspect I can't be bought.... Either I believe something is great... or not... and I do think Kim is dynamic. And I love what they are doing at Cancer Support Community...... So that no one faces cancer alone
The video may take you to the You Tube page. Or, it may not work at all... In case.....This is the You Tube Link. FYI, I love the voice of the singer..... and I really do love the song, too.