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.

Perpetual Denial

Last night while driving with a friend who is also a cancer survivor we got on the topic of denial.  It seems that when I had completed all of the requirements for the Leadership Institute for Nonprofit Executives I was about to fall apart physically and ended up making numerous doctors appointments within weeks of graduation.  Right then, I was already in denial for my health just so I could finish what felt like a marathon so I could get a medal.  And I did.  I received Distinguished Honors when I graduated for an Exemplary Final Project and perfect attendance.  I don’t even think being a cancer survivor is the reason I fall into perpetual denial.  I feel that being a survivor exemplifies how far we had to push ourselves to beat cancer!

My first appointment was with an orthopedic specialist because I was fighting a chronic case of plantar fasciitis with my left foot  and my right ankle would pop every time I would point my toe.  The plantar fascii runs along the bottom of your foot with the point of insertion at the tip of your heel.  When it’s inflamed, it feels as if someone is sticking sharp pins into your heel every time you put pressure on your foot.  They took x-rays and finally when I told the doctor about my issues he suggested that I quit wearing the orthotics that were in my shoes because they were to hard and in effect aggravating the plantar fascii.  But I’ve been wearing those orthotics since I was in drill team in High School and it felt odd trying to run without them.  Yet even against what I thought was better judgement, I got used to life without my coveted orthotics and the plantar fasciitis went away.  Plus, the popping in my right ankle let me believe that something was just not right with my musculoskeletal system and I knew it would only get worse.  That was until the doctor kept repeatedly asking me about when it popped and how it felt until he finally said that as long as it pops without any pain that it would be fine.

But he didn’t understand that I never pop and this was just not right.  Even so, he repeated himself and soon I left the office feeling like I had wasted everyone’s time including mine.  Had I been in perpetual denial about my orthotics and ankle for so long?

I think so.

With heel cups in my running shoes, my feet felt great.  And when my ankle pops I have to tell myself that nothing is wrong.  This is all part of living and learning how to manage fear of recurrence even though it is all out of our control.  I get so focused on helping others that I forget to help myself and that is not a great trait.  Yet the first step at gleaning new skills is recognizing that there are some skills I need to release and this is one of them.

When the doctor told me that it would be just fine without my orthotics and with the popping, I could hardly hear him.  I kept saying, What?  Really?  That can’t be!  Huh?  It just did not register in my brain that something I had used for so long was now not needed, as in the orthotics in my running shoes.  Or that a popping sound did not mean the end of the world or my entire leg.  In fact, he told me to stretch my calf more often and even gave me a brace to sleep in that would keep my foot flexed while I slept.  I rolled my eyes and laughed to myself, but you know what?  It worked.  My friend reminded me that once a cancer survivor, always a cancer survivor but then anything that hurts or pops tends to become something we just may not be able to handle, because it could be cancer again.  Yet as I continue to educate myself I feel more empowered with my life.

On July 8th, four years ago, I rang the bell marking the fact that I had completed chemotherapy and we all took pictures and celebrated the moment.  I was thrilled that it was over and immediately had the port taken out of my chest.  Yet our family pet was not so lucky this year when after a weekend of emergency services, the doctors discovered a
2 cm cancerous mass growing on his heart.  He had been his rambunctious self just three days earlier when all of a sudden he could not walk or breath and we didn’t know why.  He was only nine years old and such a great dog.  He was man of the house and after doing everything possible to figure out why he was sick, we got the news and it was to late to treat him.  His body was already shutting down and we were left wondering how it came up so suddenly when he was always so happy.  We were in denial when we came home without our dog, even though we knew he wasn’t at the hospital either.  Dogs have such short lives yet they leave an indelible mark on your heart with their spirit.  Even the dog didn’t know he was sick and lived every single day to the fullest.  I like the lessons he taught me.

Denial is one of many coping mechanisms we have to slowly understand and feel our emotions.  It works to save us, even though I never want to waste time.  Yet time is never really wasted because it’s moments like losing our beagle that remind us all of our own mortality.  We are spiritual beings have a human experience.  And sometimes perpetual denial can be a good thing, but only if you are a dog.