C4YW No More

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The Annual Conference for Young Women affected by Breast Cancer known as C4YW has officially come to an end.  Yes, people gasped when they heard Jean Sachs, CEO of Living Beyond Breast Cancer, make the announcement and then exit the stage leaving Jennifer Merschdorf, CEO for Young Survival Coalition, with all eyes on her.

Jennifer is no stranger to catalyzing new found success in the name of change and I am proud of her.  She is a strong woman who held that space and slowly dissipated tension that ended with an applause for Jean. Soon, the two were back on stage together hosting an armchair discussion with the experts including Don Dizon, MD., FACP, who writes a column on Patient Engagement for ASCO, Kathryn Ruddy, MD., MPH, who worked with Dr. Partridge for six-years prior to moving to the Mayo Clinic and spoke about freezing ovary chips for reimplantation after cancer therapies, and Leonard Sender, MD., the self-proclaimed “anarchist” who urged us all to unite and stand up for our consumer rights for a fascinating discussion about topics sent via text and twitter.

Even though LBBC and YSC have been partners supporting C4YW for years, it was soon announced that YSC will hold it’s Inaugural Conference the first weekend in March of 2015 in my home town of Houston, Texas.  The Rodeo will have to wait while young women with breast cancer descent upon our great City for the first YSC conference.  And I for one, can’t wait!

The final C4YW weekend was a total success when I was dancing with a new survivor roommate friend from Houston who recently completed chemotherapy and even though she felt uncomfortable without her hair, she soon was seen dancing around while twirling her wig in one hand and posing for photos.  That was my personal highlight of the weekend, besides visiting Epcot for Super Sparkle Hours available only for those in conferences and staying on the property on Friday night where we had the place to ourselves.  The last time I was there I was nine years old.  Disney really is the Happiest Place on Earth, which is perfect for anyone diagnosed with cancer.

With almost six-hundred survivors, caregivers, family and friends in attendance, even I would not have been there without the continued support of Susan G. Komen.  Komen was the Lead Sponsor offering scholarships for almost two-hundred in attendance and even Chandini Portteus, Chief Mission Officer from SGK was on hand during the Welcome and Opening Remarks when the announcement was made that took us all by surprise.  And in my personal experience receiving so many travel scholarships while on my journey, Komen is almost always a sponsor.  Thank you Nancy Brinker.

All in all, even though this was only my second attendance to C4YW, there is room for incredible growth as YSC charges forward with a conference of their own.  Especially as we continue to mobilize our efforts to affect more young women around the globe, programs like the State Leader and Face to Face Support Group Leader will hopefully gain more opportunities to reach out and connect to those affected by breast cancer.  Because as you can see from the photo above, these were the current State Leaders available pre-breakfast for a quick discussion before the C4YW programs started, which leaves room for recruiting, educating and training more survivors and caregivers to continue sharing the message of YSC that no one affected by breast cancer should ever feel alone, uneducated or unempowered.

See you all in Houston in a year!

Gratitude Sunday: The Downtown Club

I am thankful for The Downtown Club and all the beautiful people I had the pleasure of working with during the time I was going through initial treatment in 2009.  They actually called me in the middle of chemotherapy to recruit me as a Membership Director working at the largest Club centrally located downtown on top of the Allen Center Parking Garage.  It was 181 square feet of tennis courts, regulation sized basketball court with famous players stopping by often, spin studio full of bikes, yoga studio, kids space, lockers rooms with all sorts of amenities, dining room that was always packed on Fridays for lunch and even a bar where I hosted many networking events.  Even though I loved meeting new people and helping them find balance in having a membership where they could get away during the day and focus on themselves, I found myself inspired when they could see that advocating for themselves made them happy.

Meeting great people every single day from so many companies in the area meant that I had the opportunity to share my story about health including daily exercise, a positive mental attitude and nutrition.  I was a testament to the fact that I did have something that I could control over my daily life, even though cancer seemed out of control.  Of course, my focus was on women because they were the ones taking care of their entire families and leaving themselves last.  By the time they found me, joining the Club meant they had a place of refuge where they could meet friends, network, take care of themselves and just relax.  At one point, women were telling me things they had not even told their own mothers!  I was their trusted advocate and this inspired me.

When The Rose and Susan G Komen offered to utilize my voice as an advocate during their Breast Cancer Awareness campaigns, I took these opportunities with utter seriousness.  My voice was reaching larger audiences and I felt that I had a duty to share the honest truth about my story.  But when my segment aired during the Five O’Clock News, the only person who shared the excitement was the bartender from the Club.  Then, when questioned about how long another segment would take to film, I felt pressure to cancel but I had to make a decision that would affect my future.  And that was to agree to share my story including how Pink Pilates Affected Survivorship, especially since I taught Pilates before I was recruited to the Club.  More and more my advocacy took priority when my time was being questioned, but more and more I felt a moral duty to continue sharing the voice of a survivor who had made it through chemotherapy without getting sick and while running around Memorial Park and dating.  I was making a difference.

One day during lunch, one of the kitchen staff came to me with an envelope full of money and offered it to me for my work as an advocate.  I immediately returned it to her asking for a check so that I could make a donation in their honor to a non-profit making sure to return the donation receipt back to her.  She said that they had found a bag of pink ribbon pins and had been selling them throughout the Club raising money for Breast Cancer and wanted it to support my crusade.  Actually, my friend had to translate everything to me during lunch since I do not understand Spanish, but this lady, I’ll call my Angel, was so passionate about making sure the money went to me that I took it upon myself to make sure every single dollar made a difference.

Imagine how it felt and how it still feels to have a signed check with the amount written in, but the rest is blank.  From then on I had a check in my purse ready to go when I found an opportunity to make a difference for a nonprofit specifically for cancer programs.  At one point the Knock Out Roses support group needed business cards to promote the group and when nothing was done to purchase the cards, I pulled out my check and made it happen.  Those business cards helped to promote the group to others that needed support.  When I got approved to become a CanCare Support Network Volunteer and attended training, I utilized another check.  Since then I have been matched with a number of women who can count on my support.  When the Breast Health Collaborative had their Summit and I needed to register as a complimentary survivor, again I used a check.  During the Young Survival Coalition fundraising events I used a check.  Every time I made a donation, I would send Alta the receipt letting her know where the funds were being used to support other women going through breast cancer.  And many times, once I became unemployed from the Club and while I was volunteering, the check was the only way I could make a donation.

After leaving the Club in the Fall of 2010, I figured the checks would quit arriving but they continued and so I continued making donations depending on the programs that I was associated with because I felt that I could make sure the funds were being utilized properly.  From one letter in 2011 she wrote, “Thank you for allowing us to participate in this great task to help others.  God Bless You.” Every month I would just smile when the letter arrived, because my now I knew her handwriting.  Angel’s blessings were the seed funds for any and all of my successful fundraising efforts towards Komen Runs, Pink Ribbon’s local rides and YSC West Coast Tour de Pink.  By now, stewarding collaborations among nonprofits had become my specialty.

In 2012, I received a business card in the mail as it came out of the letter along with a blank check.  One of the staff at the Club wanted me to call him and so I did.  To his surprise, he had no idea that the staff at the Club had been collecting money in which to send the checks to me each month.  He could not believe that even when Angel was sick she made sure the collection was made and the checks kept coming to me as I kept returning receipts.  He told me that she collected five dollars from ten people every month so she could send me a blank check for fifty dollars so I could make sure it went to a breast cancer nonprofit.  By now, I had a file of her envelopes stapled to the letters where I would write down exactly where the money went and when I sent a thank you note.

Angel and her blessings would give me the opportunity to not only steward my time as an advocate but also make a donation to programs supporting breast cancer.  The Downtown Club has taught me so many things, and continues to do so even today.  My desk never runs out of thank you notes as I continue to steward their donations and fundraise for so many programs.  I am thankful for everyone at ClubCorp for recruiting me a total of four times to their Clubs in Houston and California in the past, because this is where I became a true advocate spending my time making a difference for those who need it most.  Her letters are happy reminders of my work at The Downtown Club as she is constantly telling me to “keep up this great task, and they are happy to make this little contribution,” before signing off with “God Bless You.”

In 2013, I was invited to an event at the Club and while I was there I asked about Angel but she had already left for the day.  I’ve often invited her to events as a very important guest but she continues to decline the invitations.  From her letter, she was so proud of me when I graduated from the LINE program through Rice University Glasscock School and could only feel joy that over the past four years they had invested in my work as an educated patient advocate as I continue to seek education and funding for a future without cancer.

Thank you & God Bless You All

 

World Cancer Day 2014

I don’t know about you, but I remember New Years Eve like it was last night.  But if I look at my phone it says that we are already in February!  Our world is changing rapidly.  I just wrote down a few items on my Vision board and they have already manifested themselves.  Just like accepting more than thirteen scholarships last year to become a more educated, networked and informed advocate, I have continued to send my applications to graduate school to study Public Health hoping to get in and a scholarship.

All I know is that I am a human bridge.  From attending both Komen and the NBCC Conferences last year, all I know is that we have a lot of work to do.  Breast Cancer is a highly political forum and as each day progresses, our healthcare system is creating more and more survivors that I hope to inspire to be empowered advocates.  The entire system in which research dollars enter competitively to the new Healthcare laws in the US still leave me wondering how change can ever occur to significantly impact the growing cancer burden.  Visiting Uganda last year I was exposed to the global cancer epidemic and even today, on World Cancer Day, I signed the World Cancer Declaration and could not find one representing organization from which I was referred.  Ultimately, it was volunteers from UWOCASO in Uganda who were so passionate about coming together for the first time with the support of Dr. Gralow and the Women’s Empowerment Cancer Advocacy Network that I recognized from the list.  Now I am left wondering why or where the other local advocacy agencies exist within Texas with a mission large enough to encompass global advocacy?

What I do know is that I’ve received ten copies of a book hot off the press entitled, “Delivering High-Quality Cancer Care – Charting a New Course for a System in Crisis” from the Committee on Improving the Quality of Cancer Care: Addressing the Challenges of an Aging Population and the Institute of Medicine and plan to start a book group consisting of educated advocates to discuss ideas and issues on a consistent basis, so that we can hope to make a difference advocating for a future without cancer.

If you have this book, or want to join my group, please contact me at sandymcastillo@gmail.com or 713-232-9796.  Thank you.