So here’s the thing…

It’s very difficult balancing being an advocate while being a patient at the same time. The lines get blurred and in the end, no matter the situation, I’m still a patient and there’s no escaping that.

I had the privilege to speak yesterday at the annual Mini Brain Tumor Symposium held at Winship Cancer Institute at Emory representing the Southeastern Brain Tumor Foundation. If you’re curious these were my remarks:

All of us at the SBTF have been where you are; confused, scared and unsure of what lies ahead.  Through the perspective of patient, survivor, caregiver, friend or family – we recognize a brain tumor diagnosis reveals in unique ways, what a complex and challenging illness this is.  

We represent individuals who have lost the battle, those who are currently fighting, those who are celebrating stability and those who are yet to learn they’re on this journey with us.  We support physicians, researchers and countless medical professionals who have made it their unrelenting life’s work to make a difference and make an impact. 

These are all of the faces behind the SBTF and who we support.

 We offer monthly support group meetings, work closely with leading hospitals and research institutions throughout the southeast, fund critical research through research grant awards, support outreach programs and raise awareness of brain tumors throughout the southeast.  Recently, we awarded research grants to Dr. Jeffrey Olsen, MD and Dr. Erwin Van Meir, PhD both from Emory.  

July 24th we’ll be celebrating our 11th Annual Race for Research. A 5k Run or 2k walk, the event is our largest fundraising event and provides the bulk of our funding for our research grants. Having funded well over $1.2 M of research grants, our Race for Research makes a significant impact in brain tumor research. 

We hope you will take time to look through our website (SBTF.ORG). We are here for you, by your side, with hope and support, working to fund a cure. Thank you.

 

I’ve attended the symposium, an outstanding and well-organized event for three years. The past two, I’ve balanced my presence between roles as board member and that of patient who wants to remain informed. It’s a great informational symposium for patients, families and caregivers and an event I make time for each year and wouldn’t ever want to miss.

This year was especially difficult. I’m not entirely sure why and I spent an hour at Frank’s “Fuck You Up Friday” kickboxing class today trying to mentally process it all. Some days are filled with a bit of rubbing salt onto old wounds.

Aside from headaches, I am doing great and going strong. I don’t spend much time thinking about all the statistics or the diagnosis itself. I’m enjoying the freedom that living in harmony with my brain tumor has brought to us. Stability is a beautiful thing. Our days and lives are filled with a level of chaos essentially devoid of any brain tumor contamination. Amazingly, we’ve managed to keep the toxic elements that come with a brain tumor from unnecessarily influencing everything else. Shit, the ‘everything else’ does a damn good job of being chaotic and unpredictably insane all on its own.

While I strongly believe in the conviction of my stability and garner strength from the prospects of my good prognosis; listening to the plethora of ominous and often exceedingly dismal statistics and Neuro-oncological information does a damn good job with challenging my convictions. With hope and optimism, I sought yesterday to focus my attention on the progress and the new treatment protocols over the ever-present looming statistics. It was a daunting task and I’m not sure I was entirely successful.

Balancing being an advocate with patients who want to speak with me; some of whom share the same diagnosis, with being a patient who comes to the table with my own wishes and fears is hard sometimes. They want to know my experience. They want to share their own. It’s a delicate process and a process I have always been, and continue to be, amenable to.

Yet, there are moments when I have to ask why is luck so fleeting and so inequitable? Moments in this delicate process where there is visible frustration and heartache on faces when patients struggle to process why their journey is extraordinarily different from mine.

I recognized from the get go that I have fared far better than so many others and have also felt very guilty for being so lucky. As a result, I decided early on that I needed to be very guarded with what I shared with other patients. I figured the best approach was to simply speak honestly to only what was asked of me. A delicate dance.

Even still, I’ve encountered another patient in desperation say that her tumor must have been “so much larger” than mine since she suffers with seizures and has had some cognitive loss. Having already shared the size of her tumor in our conversation,  I graciously acknowledged it was possible. For a brief moment she appeared vindicated and I felt guilty. Our tumors were not vastly different in size.  

It’s a difficult balancing act finding equilibrium between my role as patient and advocate. It is a constantly evolving process. A process I hope one of these days will get easier; that I’ll feel less guilty for my stability; and that next year I won’t let the statistics make me feel as unsettled and vulnerable.  Moving forward, one baby step at a time.

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