My Top 4 Cancer Hero Stories Of 2013

I had the privilege of corresponding with Dr. Don Dizon (profile  here) a few weeks ago and he brought to my attention a program for fundraising at Mass General that recognizes the Top 100 Cancer Hero’s (more about program or to nominate here). It made me stop for a moment to think about the various people I have met and worked with over the past few years focusing on cancer. If I was able to highlight a few stories on my own Cancer Hero’s, who would I mention? Why?

1. Peggy McKinney: I had the privilege of working with Peggy over the past year on a project focusing on Multidisciplinary Conferences (MDC). I knew of Peggy and her amazing work from being a member of the National Cancer Institute’s (NCI) National Community Cancer Centers Program (NCCCP, click to learn more) and her focus on enhancing traditional tumor boards or cancer conferences into more robust dialogue and care of patients in a true multidisciplinary format.

What does this all mean for consumers of cancer care?

It means that traditionally cancer conferences reviewed cases that had already been treated or were about to be treated by the 5 main specialists: Medical Oncologists, Pathologists, Radiologists, Radiation Oncologists, and Surgeons. Taking this framework and model, it expands the conversation so that all patients being diagnosed with cancer are presented and discussed prior to a medical intervention. (ideally, but if medically necessary, intervention occurs) It also means that it is not only a dialogue between physicians, but it also includes nurses, navigators, palliative and hospice care, nutrition, primary care, social workers, physical therapy, and other members of the care team to meet and discuss the treatment options and considerations for patients. It is a holistic view of the patient, their needs, and meeting their expectations.

Peggy not only exemplifies this in the work she has done with the NCCCP and the project that we collaborated on, but she always keeps the consumer (consumer=patient) at the center of all of her work. She was a champion to help urge physicians to include the other members of the care team into the conversation. She was instrumental in ensuring that everyone had a baseline, recommendations for improvement, & ensuring that the dialogue moved beyond just the physicians, but included the entire care team. Peggy is also committed to having each program discuss the MDC conferences with their communities and consumers, and to let them know that not just one physician is reviewing their diagnosis, but that a team is reviewing and making recommendations for their cancer care plan.

Peggy exemplifies a commitment to consumer focused care. She leads with empathy and the ability to listen to all members within the care team. She excels at meaningful dialogues and always connecting it back to consumers, physicians, care teams, and making an impact across the United States.

Peggy is at the top of my list for her lifetime of dedication, leadership, and pioneering meaningful dialogues and connecting stories that impact the lives of people diagnosed with cancer, and the families that care for them as well.

2. Deana Hendrickson (@LungCancerFaces; blog: lcsmchat.wordpress.com), Janet Freeman-Daily (@JFreemanDaily), and Laronica Conway (@louisianagirl91).  Deana and the #LCSM chat made a tremendous impact to me this year. It is a chat that is moderated by both a patient advocate as well as a physician, Dr. Jack West (@JackWestMD). At times they include additional guests or experts on Lung Cancer. Other times it is focused questions on something in the news, patient experience, or perhaps the stigma associated with lung cancer. It is done in a respectful yet thought provoking manner. My small mention cannot do it justice. I would suggest you try joining one of the discussions. It is amazing to see a community rally around such an important topic to bring awareness, allow for collaboration between healthcare providers and consumers, and to change the stigma associated with Lung Cancer.

3. Andrea Borondy Kitts (@findlungcancr) has also made an tremendous impact on me this year as well. Andrea too has been impacted by lung cancer. She lost her husband to this dreadful disease this past year. She too works to improve the stigma associated with Lung Cancer, to bring awareness, and to question why we have been slow to move the needle on improving Lung Cancer Research, funding, and impacting the lives of those diagnosed with Lung Cancer to make it a more survivable diagnosis.

Andrea and Deana both worked tremendously this year during Lung Cancer Awareness month to ensure that a new fact was brought out each day. They worked to educate all of us on how Lung Cancer is stigmatized, the lack of funding, and that it is a diagnosis that is not limited to smokers or nonsmokers, men or women, but is something that all of us are at risk for just because we are humans and we need our lungs to breathe air and survive. Their campaign of #LCAM2013 helped to amplify the story of Lung Cancer during the month of November and helped to educate all of us on the facts, figures, research, treatments, and screening related to Lung Cancer.

4. My father: Since this is my own personal top Cancer Hero’s list I decided that I would choose my father as well. I have 2 main reasons. The first was his decision to live his life once he was diagnosed with Pancreatic Cancer. My dad only lived 6 short weeks once he was diagnosed, but instead of fearing death and wanting to fight to escape it, he chose a road less traveled, and decided to live his last few weeks on his terms. He decided not to go through chemotherapy. He decided to have hospice, to be at home with his family, and to enjoy his days with his family and friends. He made his peace, said his farewells, and shared his love with his family until the sands of time stopped running through his hourglass.

The second reason is what my father has always taught me, but more importantly, the gift he gave me. In my fathers last days he reminded me of his love for me and his confidence in my ability to make my dreams come true. He reminded me that in seeing love in everything we do, that it frees us from the fear of not being good enough, the fear of rejection, the fear of being judged. His love reminded me that I always need to be impeccable with my words, do not take things personally, do not make assumptions, and to always do my best. He reminded me that we always have a choice in life, and if we realize that life is fleeting, we break the bonds of fear that most of us live with daily, and we can see the light through the fog of fear. If I can awake each morning and see the love in everything around me, if I can focus on the awe of the world as I did when I was a child, I can see that all things are possible. The only limit to the possibility is my imagination. His love taught me to ignore all of the loud shouting and banter that goes on in my mind, and to find that soft whisper in my heart. To not just listen to it, but to follow it. In following it, it will always lead me to happiness.

That soft whisper reminded me that I am a healthcare professional myself, and that my greatest gift is that I listen with empathy and I can connect all of the dots between consumers, physicians, administrators, vendors, payers, and other care teams. I have held most of those hats in my career and it provides a point of view that is all my own. It reminds me that my role is to challenge, to connect, and to focus on “geekingcare” for consumers.

This is the story of my top 4 cancer hero’s. There are many others that could be mentioned, but these are the top 4 tat have impacted me in 2013.

Who are your cancer hero’s and what are their stories?

As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek

~CancerGeek

#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #CX #UX

Advertisements

2 responses to “My Top 4 Cancer Hero Stories Of 2013

  1. I’m not sure I can point out any heros this year. I’m still too new to this whole lung cancer dance and am barely out of the daze the diagnosis threw me into. I think I’m on surer footing now, and am thinking I need to do more research and see where I fit in.

  2. Pingback: Weekly Round Up | Journeying Beyond Breast Cancer

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s