YSC Tour de Pink West Coast 2013

The same year I was diagnosed, which was 2009, my roommate helped get me out of the spinning studio and onto a road bike.  I’d started teaching spinning in the 90’s when I lived in Northern California, but now I was ready to get out of the gym and onto the road, with a little help.  Pink Ribbons provided the basic training to get on the road and as long as no one was in my way, I was just fine.  Stopping was scary, but long rides were so fun.  I loved being outside and by 2011 my longest ride was the Katy Flatlands were I finished 50 miles.  Soon thereafter, I bought my own bike.  Rocco became my “hot date” as I felt like I could fly when we were together.  Thanks to my friend Cynthia at Bike Barn, I was set up and ready to go!

Fast forward to earlier this year and while at C4YW (Conference for Young Women with Breast Cancer) in Seattle and add in the fact that I’d become a YSC State Leader, I was introduced to the original Tour de Pink!  YSC started these rides even in Texas, but today we (YSC) host them everywhere but Texas.  The West Coast ride is 200 miles but with a shorter distance option bringing the total mileage down to 165 over three days.  The kicker is that the entire trail is along the coast and PCH1 (Pacific Coast Highway 1) which meant it was stunning!  You know when you die and you get a montage of the highlights of your life?  Well, all I know is that my eyes were wide open with full video that I just KNOW will be in that montage because I was in heaven.  The beaches, the trees, the smell of flowers as we went through Malibu and all the towns in between north of LA all the way down to Ponto Beach.

All we had to do was raise $2500 and get ourselves to Thousand Oaks and then the full experience was master planned for three days.  Everyone was amazing from the fabulous pit stops with PB&J sandwiches (which I had sans the wheat and on bananas with nutella!) to the SAG rides with friends offering to take me shopping or for a cocktail, our hotels were gorgeous and the massage therapist was booked solid.  They moved our luggage and took care of us for three days of pure heaven.  To my surprise, during the award ceremony I raised the most money as a survivor, while a caregiver who lost his fiance to breast cancer raised $60 thousand!  Together we raised more than $440 thousand for the Young Survival Coalition while wearing survivor jerseys sponsored by Harley Davidson, Giant, Celgene, and  a host of others.  Liv is Giant’s line of women’s bikes and they even had a survivor design this years complimentary bike for survivors to ride.  But you know I brought Rocco with me and together my max speed was 41.8 and boy was that addictive…  I am ready to purchase luggage for Rocco so we can travel more often, well, anywhere where there are rolling hills and water!

The first day I was cruising and having fun when all of a sudden a ride marshall comes up behind me and starts pushing me up a hill with one hand on the small of my back.  I’ve never known such power!  I was amazed and when the ride was over, I wondered “Where is MY power?!”  That first day I rode about 50 miles.  Day two started out in rolling hills with fog.  Have you ever been in a white-out?  Like when you are boarding and you can’t see that far in front of you?  Try riding super fast in the middle of the road virtually all alone going 28 mph in the fog.  It was thrilling!  But supposedly that day we missed some incredible views of the bluffs, but what we didn’t know didn’t hurt us.  That’s the day I woke up feeling a bit nauseous and didn’t put two and two together because I was getting progressively more dehydrated.  Plus, as the fog wore off I eventually got a sunburn and had to stop.  From the SAG I got a ride to the hotel where I was a mess.  I felt horrible, was snappy, and nauseous and couldn’t urinate or even think straight.  It was bad.  I worked for the following 16 hours to get ready for the last day of riding by drinking and relaxing by the pool.  That night we had yet another fabulous dinner outside where people get married at the Marriott in Newport Beach.  The award ceremony was fun, especially when you unexpectedly hear your name!

Sunday morning was the best breakfast when I rolled in and was completely surprised to find a juicer complete with kale and beets and a sign that said, “Please use the tongs.”  Well, OK then.  Using tongs I loaded up the juicer and took photos to share on Facebook because I was overjoyed.  Plus, I needed the enzymes that I’d missed for two days to help with my last day even though I still felt a bit nauseous.  The day went great until all of a sudden I hit a wall around 32 miles.  I had to stop and get off the bike.  But you know, as usual, I could not get sick, not when the next pit stop was a mile ahead.  So, I rode in and refilled my Camel Back with Gatorade and got in the SAG-Mercedes for a ride to the beach entrance so I could ride into the finish.  Riding along the beach through Muscle Beach, Venice Beach, Santa Monica Pier, and so on was enlightening and I forgot all about my nausea.  At the end, I got off my bike and headed to the beach for the Grand Finale Party where I finally got to put my toes in the water.  Sweetness.

Since I raised more than $4 thousand dollars I now have the special Oakley Pink Survivor Sunglasses, Survivor Jersey, Arm Covers, Socks and stories of a fabulous YSC Tour de Pink West Coast 2013.  Thank you to the Houston Aero’s, YSC and the Girl Scouts of San Jacinto Council for supporting Team Warrior Goddess earlier this year.  Together there were four of us from Houston and we raised more than $12 thousand dollars!

 

2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit Uganda

My experience as a breast cancer survivor over the past four years has led me to the most interesting scholarship experiences, but in September I was invited to attend and speak at the 2013 African Breast and Cervical Cancer Advocacy, Education and Outreach Summit in Kampala, Uganda.  This would be the first conference of it’s kind in Africa and for me, the opportunity to make an impact.  Earlier in the year while lobbying at a National level with advocates from Nigeria and Ibadan, I learned how African countries lacked the infrastructure to safely support newly diagnosed women through therapy.  Uganda continues to lead East Africa with its Cancer Center and 11 Medical Oncologists thanks to the support of the Fred Hutchinson Cancer Research Center and the University of Washington.  The opportunity to meet the Ministers of Health, NGOs, advocates, doctors, researchers, volunteers and survivors enticed me to attend the Summit in addition to presenting my idea on a program called Survivors in Science.  I shared information on scholarships and opportunities for those wanting to bridge information from science to the survivors themselves.  The conference was created in partnership with the Breast Cancer Initiative East Africa, which was founded here in Houston by Philippa Kibugu-Decuir, and the local Uganda Women’s Cancer Support Organization.

Then, just two weeks before the summit, I received a ticket for my flight to Uganda and only then, did I get all the required vaccinations and malaria medications needed to travel!

Flying to Uganda with two other survivors Philippa and Joyace Ussin, an oncology nurse from MD Anderson took a total of almost 36 hours but it was all worth it when the Summit finally came together and started.  From a secure hotel the conference room was filled with a total of 75 in attendance including local Ministers of Health, doctors, advisors, researchers, survivors, advocates and volunteers representing 8 different countries all under the direction of Dr. Julie Gralow, Endowed Professor in Breast Cancer, Professor, Department of Medicine, Division of Medical Oncology and Adjunct Professor, Department of Global Health from the Fred Hutchinson Cancer Center and the University of Washington.  In 2003, she launched Women’s Empowerment Cancer Advocacy Network or WE CAN to connect countries to improve women’s health through education, advocacy, sharing and reaching out. The 501(c)3 nonprofit specifically works to empower areas of limited resources with education, networking and the inspiration needed to overcome limitations to access to care.  If advocates can’t get the resources they need through public channels, then she helps them work privately to bring in resources to screen women, referring any suspicious cases through available health channels.

The conference opened with a powerful song about survivorship written and sang by a survivor, before a panel of Goodwill messages moderated by the Uganda Cancer Society.  Drs. From local NGO’s including Dr. Kingsley Ndoh MPH from Nigeria  spoke about the opportunities available for increased sustainability for cancer health care including the role of government in prevention.  Dr. Jo Anne Zujewski from the National Cancer Institute chaired a panel on Breast Cancer Education before Dr. Gralow chaired the session on Cervical Cancer education.  The day wrapped up with sessions on Palliative Care and Successful Mobilization of Policy Makers to support Breast and Cervical Prevention by the Parliament of Uganda.  Day two was led by LIVESTRONG with Advocacy and Stigma Training, which was highly beneficial to the current culture of progress within East Africa.  The session included defining mission goals, strategies and tactics needed to start to move the needle on social stigmas.  Currently the cancer stigma includes being shunned by the entire family and being sent to the hospital with all of their belongings thinking they will surely die and never return.  Day Three included an activity that separated the entire group between those pretending to be diagnosed with cancer and those told they had normal results.  I had normal results.  Discussion took place as to how this felt among the group and at one point a normal patient was then misdiagnosed and asked to join the group diagnosed with cancer.  She shared her feelings of confusion and denial wanting a second opinion.  The activity initially made me mad until a nurse helped me see that this finally brings home the news of being diagnosed to those that can make a difference for so many others.  Cancer doesn’t care about the patient’s color or political persuasion and the more tolerance we have globally to work together towards a better understanding of the disease then the more people we can get access to care creating survivor advocates like myself.

After long breaks that were termed “Africa Time” because they included lots of networking, my 1:15pm presentation became a reality an hour later.  Sharing my experiences with identifying, applying and winning scholarships that promoted education and knowledge for local survivors was well received and as it turned out, it was only well received by those countries that had survivors.

I knew I wasn’t in the states anymore when Dr. Claudia approached me with sadness and excitement and told me that her country of Madagascar does not have survivors.  The words didn’t compute in my head until she said that some of the Madagasy, if they have the money, fly out of the country for their Cancer treatment and most don’t return.  By the end of the conference, it was clear that making a difference by coming together needed to happen in Madagascar and a date has already been set for next year on April 6, 2014.  She plans to host a conference on Cancer Education and Advocacy and promises to find survivors so I can train them on how to become educated patient advocates!  Now that’s what I call team work.  Even after returning to the States, the networking continues as I continue to make a difference from Houston.  However, I need to plan a sight seeing trip next time I visit Africa because this trip was a nonstop mission trip.

Authenticity is Key

Finding your true purpose in life takes time, patience and persistence.  Sure, lots of people make it look easy with their successful jobs and families, but the question still begs to be asked:  Are you doing what you are supposed to be doing with your time on earth?

As life changes, so does your perspective.  The one thing we can do for ourselves and for our business and personal relationships is continuing to ask questions.  Is this still working for us both?  Is what we used to do in the past still working for us today?  Is that really want you want to be doing anyway?  How can we continue to grow with each other?  Wait, what makes ME happy?  Because relationships are key to our own personal authenticity.  Each relationship is like holding up a mirror to what you value in life.  Look around you.  What do you see right now?

As Americans, we have the opportunity to change our perspective and even our mission in life more often than others.  I was recently on a conference call from Johannesburg, and when everyone introduced themselves, they spoke of their past training and subsequent jobs while we all ventured in a new direction together.  The same holds true for all the volunteers in the world that have a variety of jobs and then join together to make a difference for local nonprofits.  There are so many opportunities to find what makes you happy with your time through volunteering for special events or on a weekly basis that you can ask yourself:  What makes me happy?  And then, find a nonprofit that serves the same sort of mission and try it on for size by donating your time.  You really don’t know the answer until you try doing it.  Yes, actually doing it.

The best part about volunteering is that you can truly lose yourself in happiness and find yourself working without watching anyone’s clock.  By participating in this type of volunteerism and education, I found my true calling in life and that is creating and composing collaborative and sustainable plans within complex public and private organizations with layers of outside forces affecting the issues.  While interviewing for a job, I was thrilled to receive my individual Birkman report that not only confirmed my happiness but it actually gave me the data I needed to see to embrace my intensity for Design/Strategy defined as:  1. A work environment that emphasizes planning, innovating and creating.  2. A culture of ideas, usually with a strong strategic focus.  I am grateful for staying true to my course, even against all odds and sacrificing so much because it was all worth it!

Keep scratching at the core and you will be amazed at what you find.