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.

 

 

 

Gift of the Magi

This year has been full of all sorts of twists and turns with hidden meaning.  At first glance it looked as if I knew what I was doing, but in hindsight, I had no idea what to expect.  Let me break it down for you:

January started with mandatory meetings in the Leadership Institute for Nonprofit Executives to prepare us for the final practicum project that would culminate in our final grade.  Not knowing what to expect, my original great ideas were all shot down for something much bigger.  In fact, my practicum project turned into two separate projects with my final paper on the collaboration of the two.  In reality, at times even I was uncomfortable being in between the two projects, but as a consultant, that is my job.  Finding ways for the two sides of the brain, sort of speak, could work together was the only way the entire project could advance.  While in the same month, I was tasked with my first job with the Department of Defense to review eight applications for the Molecular Biology and Genetic Panel in February.

In February, besides starting a Goddess (YOGA) Class on Sundays, I was getting deep into the practicum projects with Methodist Hospital System and Foundation as my mentors and clients while finishing the DoD proposal reviews on deadline.  The reviews themselves initially took about eight hours for the first one since I had to ramp up my understanding level on the subjects and then understand exactly how to respond to the review questions.  But I loved every minute of it!  I fell in love with the idea of being a Fellow working on such impactful research.  By the end of the month, I flew to Seattle, WA for the Conference For Young Women with Breast Cancer with Amber.  We were thrilled to be there and spent our first day at the Boeing Future of Flight Aviation Tour.  I knew I had to see this place, but what I didn’t expect was how exciting it would be!  We were both giddy and it’s an experience I find hard to share especially since we were followed by security and had to leave our cameras and phones in a locker before even heading to the largest building on the planet.  The C4YW is where Amber finally got to hear from Dr. Gralow about the statistics for young breast cancer survivors and hormonal therapy.  It was then, that she looked at me and said, “Did she just say what I think she just said?”  I said, “Amber you’ve got to apply for Project LEAD this year so you can learn more about what she is talking about.  Yes, she said what you think she just said.  And we have to warn the others!  Soon after we returned to Houston, Amber, who had had major issues with her hormone therapy and got approval from her doctor to discontinue use of them, was back on again because she knew better… now.  And then when I got home from the West coast, I had twenty-four hours to repack and head to the East coast for the DoD review meeting.  Seated with three other consumer reviewers, sixteen distinguished doctors and researchers, the scientific review officer and Chairman, we spent three days together reviewing and discussing the applications while we rated them one by one.  For some reason, when we were done, I was so brain dead that I missed my little window of opportunity to visit the Smithsonian National Air & Space Museums Udvar-Hazy Center.  If I am ever in the area again, I will go directly there!  Needless to say, I came home thrilled, exhausted and completely inspired.  By the end of February, I had been on a total of five interviews for three different companies.

March is always a great time of year for me, because it includes my birthday.  I was lobbying with ABCF for greater governance of CPRIT funds, when I decided to spend my birthday in Austin in a class with Dr. Gurucharan.  That was by far the best birthday in my history of birthdays.  It was a busy month as my double practicum project was coming to a close and it was time to start writing the final paper.  For some crazy reason, I also ended up on the Corral Committee for the Houston Rodeo which meant we had to spend so many days at the Reliant Center confirming the tallies in SAP for alcohol sales throughout the Rodeo.  The Rite of Spring Ballet was amazing in addition to getting to see both Bruno Mars and Pit Bull while working the Rodeo.  At the end of the month the Aero’s Breast Cancer Game was a complete success with funds going directly to the Tour de Pink fundraising team that Amber has started.  Together she and I called ourselves the Warrior Goddess Team since we have the same birth day and we are both Pisces.  She has signed me up for her team while we were in Seattle in January knowing that she was going to get a complimentary bike from GIANT and that I already had a bike named ROCCO.  Sadly, Mafreless closed at the end of the month, and thank goodness I was there a week before it happened!

April was amazing.  The Bingo Hall supported the Alamo Breast Cancer Foundation Team at the Avon Walk in Houston and made a donation on my behalf so I could participate.  In addition, I was designated as the ABCF representative during the ceremony festivities where I got to accept a check for fifty-thousand dollars on their behalf!  After walking ten miles, I was limping due to plantar fasciitis and ended up sleeping the day away in a tent on the RICE campus while on medication.  But on Sunday, the final ceremony put me on stage with many amazing cancer researchers that were so excited to receive the funding they needed to continue their research!  Before the AVON walk, I had spent the week pouring out my thoughts into my first draft which ended up being almost one-hundred pages.  By the time I got home with my foot fully enflamed, I had to edit the paper and submit it by 2pm the next day.  Done.  On April 29th, I gave my final presentation to all three of my mentors where I gladly took more than two-hundred hours of research and filtered it down to thirty minutes and received applause for my results.

May started with an opportunity to testify in front of the Public Health Committee in support of HB 149.  To my surprise, I was called to testify first and was the only one in the room there on behalf of educated survivor advocates.  Everyone else was looking for their funding.  Then I was invited to attend the National Breast Cancer Coalition Advocate Summit in D.C. with ABCF.  Every single minute I was engrossed in information, education, networking and pure delight especially getting the chance to talk to Dr. Fuqua from BCM.  We need more researchers like her in Houston to share knowledge with local survivors.  Spending the day in D.C. meeting Senators Cruz and Pelosi among other advocates was a highlight.  Especially when it included lobbying with new friends from Nigeria.  When I returned home, I was promptly introduced to a local advocate from East Africa after spending the day applying for a job supporting breast cancer in the same area!  I was completely surprised when I received a call from my representatives offices letting me know that I had won their vote!  The Ballet is always a welcome relief to meet with my friend Sally and catch up on life.  By the end of the month, it was time for our ceremony and to graduate from the LINE program at RICE.  I was eager for my results and I was truly surprised to receive Distinguished Honors in front of my parents.  I dedicated the experience to them for making it all possible.

June I flew directly to Chicago for the American Society of Clinical Oncologists Annual Meeting with thirty thousand doctors and researchers specializing in Cancer.  My friend and then-current President, Sandy was also there with me from ABCF which meant I had the opportunity to share in many different types of business meetings including meeting with Dr. Gralow on behalf of the upcoming Women’s Empowerment conference in Uganda.  I also met with Dr. Jimmie Holland and her husband, and got to see Dr. Olopade again since she had spoken at the NBCC Advocate Summit.  I enjoyed Chicago and all the VIP events with all the other advocates from around the world.  When I got back, I also knew it was time to see a new Oncologist because I had also had serious side effects that kept me from continuing hormonal therapy.  My Oncologist didn’t have any answers for me.  So, I needed to ask someone new and that was Dr. Osborne and in my frustration, he was my light.  Even with all the scholarships and opportunities going on in my life, I still had not found a job and found myself depressed and unable to get out of bed.  Dr. O reminded me that after cancer, chemo and radiation that this was common, but for me?  Really?  That can’t be!  But it was true.  He prescribed an alternative medication for continued hormonal therapy that didn’t have any of the side effects I’d experienced in the past and that was a huge sigh of relief.  Just like Continental Airlines:  If you don’t like the answer you are receiving then hang up and dial again!  You have to be your own advocate no matter what.  My friends on Facebook freaked out because no one really changes Oncologists when they are doing so well, but I wanted more.  And I got it.  Thank you Kent. Then, I spent a few days in Dallas attending the Komen Leadership Conference as one of only two Advocates in Science.  It seemed odd that when others found out that they “were not worthy” – haha.  What I found is that most of the advocates at the Komen Conference were not survivors and they loved being connected to something bigger than them.  I got to meet Dr. Oluwole from Pink Ribbons Red Ribbons which supports breast and cervical cancer in Africa.  I already had an informational interview scheduled with the PRRR office where everything seemed to come together with the support of my entire village.  Finally, I felt like someone was listening to what I really wanted to do with my life.

In July, I traveled to Colorado and took the opportunity to visit with my friends in Evergreen and Boulder.  I also just happened to find the old license plate I hung at the Little Bear and revised it to exclude my past marriage, which felt awesome! I truly miss living in Colorado and kept thinking about applying to grad school out there, but where exactly?  I wasn’t sure.  Neuroscience?!  The idea kept coming up ever since my birthday, but then something else would come up and I didn’t know how I could afford continuing my education.  All I knew was that I had to do it!  I was riding in my friend Monica’s convertible Mercedes headed to Evergreen when the phone rang.  It was the ladies from ESCAPE wondering if I was interested in attending the retreat at Miraval even though they had lost my application, but they needed to know right then.  It took me a split second to respond, Absolutely YES!

August I was happy to have two different interviews and one part time job offer!  Working as the Brand Coordinator at the Katy Area Economic Development Council is a fabulous project with incredible people.  But that didn’t happen until after the ESCAPE leadership conference for cancer advocates encouraging the integration of mind, body and spirit for balanced living and to overcome compassion fatigue.  All I knew is that this was exactly what I needed as I flew to Arizona for a week of pure bliss.  We had half the day to take classes and enjoy the spa before coming together for exceptional presentations and interactive workshops to remind us that we come first and that without a balanced life, we can’t really give to others in need.  Just when I thought I was bored, I had a significant shift that was transformational.  When I got back, I was in the interview when I was offered the job and I was thankful to start the following Monday.  I had already been invited to the Breast and Cervical Cancer Conference in Uganda, but I couldn’t go unless I had all of the required vaccinations and nod from my new Oncologist.  With two weeks until the flight, I received an email with our reservations and only then did I get all the vaccinations that I could now afford since I had a job.

In September I was headed to San Francisco with the Komen Advocates in Science to attend the ASCO Breast Symposium.  But first we had to work on a team on a backgrounder on Immunotherapy.  The paper kept me busy before during and after the Conference that I was fully invested in for future Komen readers.  During Dr. Sledge’s private presentation on the future of breast cancer did he inspire me to get involved in cancer research now more than ever!  I talked to a practicing doctor about her journey and I quickly decided to stick to research.  And with my new job I was fully focused on ramping up to speed with their program when I had to fly to Uganda for the first Breast and Cervical Cancer Conference in the history of the country hosted by Dr. Gralow and her nonprofit Women’s Empowerment Cancer Advocacy Network or WE CAN.  It was during lunch on the second day that I met Betsy and Dr. Ndoh who inspired me to take a direction in graduate school towards a Masters in Public Health.  There’s an idea.  The conference in Uganda gave me the opportunity to share a presentation on Survivors in Science and how to continue through a journey of scholarships and opportunities.  A small group of us had white lab coats embroidered to reflect the program as advocates are taking on more of an educational role within their communities.  It was very well received from most of the audience only because in some countries they do not have any survivors.  Between the Ministers of Health, Doctors, NGOs and volunteers, it was a great combination of talent, education and networking with the tools they received from LIVESTRONG and each other.  Then, we flew to Rwanda to spend some time with a local NGO until the shootings in Nairobi happened and we took the opportunity to fly back to the states.  I have to say Rwanda was safe and inviting except for some of the people.  Some would rather you come in and train the locals before getting the hell out of the country.  I can only empathize with them even though I enjoyed my entire trip.  On the day I had to leave, there was a huge rainbow outside my bathroom window.  It was time to go.

October was the long-awaited Tour de Pink bike ride along the West Coast with Amber and her sister and her husband.  We all flew into John Wayne Airport which was the best airport for me and ROCCO because he made it out before my luggage!  We spent three days riding through the most beautiful views on Pacific Coast Highway 1 going from North of the LAX airport back down to the John Wayne Airport.  At one point we road through thick fog on rolling hills.  Another time we were along the beach with the flowers and palm trees.  We also road through all the beautiful beaches from Malibu all the way down to Manhattan Beach.  On the last night they had a ceremony where I was shocked to receive the award for the survivor with the best fundraising!  This was all because of everyone’s effort during the Aero’s event, which would be the last because they did not renew their lease with the Toyota Center.  Houston is now without an indoor ice hockey team.  Sad.

In November I had an easy decision to make when I couldn’t afford to attend the Advanced Breast Cancer 2 Conference in Lisbon, even with a scholarship or I could attend the Patient-Centered Outcomes Research Institute Western Regional Engagement Conference fully funded.  Off to New Mexico I went to meet with two hundred others from the West Coast to learn about the PCORI research methods that included the fact that as an advocate I could be a part of the Principal Investigator Team.  This is huge.  In the not so near past, no one ever asked the patient what the patient wanted.  Now, with the support of NBCC and others, even the DoD is required to have consumer advocates to give the doctors and researchers a real world perspective.  But now with PCORI, the entire research platform is based out of the Affordable Care Act and is truly making a difference for so many people by funding research that is making a difference right now, today.  We even visited a research project on the Zuni Indian Reservation where we were treated to a traditional Zuni dance and got to meet the Tribal Leaders.  When I returned, I had the opportunity to share the Survivors in Science Presentation again during the Young Survival Coalition Educational Event “Before & Beyond Breast Cancer” along with Dr. Lucci to a small group of incredible women and men at Methodist.

Now that it’s December, and my job is budgeted to continue as a part-time project, I am reminded that I am scheduled to take the GRE on the 28th and need to start studying.  But first, I am focused on the upcoming San Antonio Breast Cancer Symposium where eight thousand doctors and researchers will be in Texas to discuss the latest research in breast cancer.  Advocates from all over the world will be in attendance for special sessions sponsored by NBCC, Komen, AACR, and other advocate driven networks.  Of course, I will try to attend all of the special invitation events now that I have more experience and understand each nonprofits culture and mission.  Which reminds me of the last slide in my presentation:  “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed it is the only thing that ever has.”  Margaret Mead.  Please pray for me and the GRE!  I don’t know where I will be going but I do know that I am interested in a DrPH which is a PhD in Public Health or Public Health Policy.

I’ve given up trying to start a new life and started living the life I have.  As I look back as the year I am reminded how blessed I am to have scholarships and a part-time job because they go together well.  I’ll keep praying to be in the best place to make the most impact with my time and presence.  May you have a blessed holiday season and merry new year!