Survivorship Innovation with a Dose of Reality

As I sit here reviewing tweets and abstracts from last week’s Survivorship Symposium in preparation for the upcoming #BCSM tweetchat, I feel compelled to share a personal moment in time from last week and a moment that defines much of what it means to be an educator and advocate for those affected by cancer.

The inaugural Suviviorship Symposium was held in San Francisco, CA January 15^th - 16^th and was cosponsored by ASCO, AAFP and ACP. If the diversity in conference sponsorship were somehow insufficient, the diversity of specialties in the room confirmed that the needs of patients before, during and post active treatment were of primary concern. Onocologists, radiologists, primary care physicians, nurse navigators, cardiologists, epidemiologists, internal medicine docs, patients and patient advocates were all well represented.  As a patient and an advocate, I felt only acknowledgment and validation from the healthcare community that survivorship comes laden with its own burdens that for most people, involve physical, social, financial and emotional impacts. 

Innovative and integrative methods of whole person care were highlighted as ways to address these unique needs.*

High on the innovation and progress in the #SURVONC16 conference, I received an email. The first line tried to prepare me for the content:

“It is with a heavy heart…”

Those are the worst kinds of emails. To write and to receive.

I sat through a few more minutes of the presentation but suddenly the technical was uninteresting and I was unfocused. I left with my coffee mug in hand to wander, leaving a post for those who were closely following the conference via my tweets:

Sitting in #SurvOnc16 excited about innovations in cancer survivorship. Just recv'd email - another 'survivor' friend has died #bcsm #gutted

— Stacey Tinianov (@coffeemommy) January 16, 2016

Like a fist in the chest.

I wandered upstairs to the poster session where coffee and tea are always readily available. I tried to take solace in the fact that this woman was an 18 year survivor before cancer killed her but, as I did the math, I realized if I were to ‘achieve’ living 18 years beyond my diagnosis, I would die at 58. I would leave my husband spouseless at 62. My youngest child would only be 28 years old and I may or may not have gotten to hold a grandchild in my arms. The tears brewed but didn’t spill over.

A young woman was creating a coffee masterpiece with cream and cinnamon and hazelnut syrup. The concoction was a sight to behold for a caffeine junkie like myself and I commented favorably on the dessert coffee. She mentioned she was unable to focus so thought coffee would be a good solution.

I mentioned I was also unable to focus so I was switching to tea.

I introduced myself and discovered she was local to SF and actually an infusion nurse. I thanked her for doing what she does on a daily basis and we began talking about survivorship programs. The distraction was nice but when I became excited about what her institution was rolling out, tears began rolling down my cheeks.

I explained that I wasn’t crying because of what she was saying but that I was struggling with the dichotomy between the innovation and energy downstairs and the reality that a woman just died.

If you want to understand the source of proverbial fire in an advocate’s belly, you likely have to look no further than their connections to others. Others who are suffering, others who have died and others who hold significant risk for being tracked into the health care system as a critically and/or chronically ill patient.

In a period of minutes I felt the emotional dichotomy between hope and despair. The future is bright and yet, for some, the future is not an option. As I stood there, trying to get it together, this amazing coffee concoction creator and compassionate infusion nurse reached out and gave me a hug. We chatted for a bit longer as I tried to reorient my focus on the present and the promise for the future even though I know many of the amazing people I learn with and from won't necessarily be here for that ever elusive 'future'.

So, when people ask why I remain steeped in the cancer space and why I spend my time working to change the slow moving goliath of a complicated health care system I give them a variety of authentic answers about making a difference, changing the system and working with amazing people trying to solve really complicated problems.

And, while all of the above are authentic reasons, ultimately my answer is: 

Someone has to because the status quo just isn’t working. 

*A more complete blog regarding themes and content of the Survivorship Symposium will be created and posted at #BCSM.