GREY MATTER LIFE

An extension of our journey begins tomorrow. I’ve been keeping this to myself for quite some time. Not quite sure how to share and not quite sure how it all would be received, I’ve kept my mouth shut. 

From the outset, in the first moments I wondered if I was being “Punked”and an MTV crew and Ashton Kutcher would jump from the bushes, point and laugh. Pretty quickly I realized I wasn’t being “Punked”, but I remained quiet as I contemplated maybe it wouldn’t happen and considered maybe they’d change their minds. That wasn’t the case either.

After over a month of phone conversations and emails with the managing editor/producer, we begin tomorrow and we’re taking a big step.  

CNN and Sanjay Gupta are covering my journey with my brain tumor, how we faced my diagnosis, how the experience has reshaped and redefined our lives, how we’ve settled into our new normal and have decided to forge ahead embracing stability and are now preparing to welcome a third child to our family.  It’s a story that has captured their attention, yet we tend to not think of it as a story but more simply, our life.  

Filming begins tomorrow. Damn, that felt awkward and surreal to write.

My story, which has become our family story, will be featured in their “Human Factor” series which they described as, “Covering people who have achieved extraordinary things despite having to overcome major obstacles”.  The piece will air on CNN, Headline News and online where I will author a blog to accompany the video on the CNN Health website.

I’m honored and flattered to say the least. I’m also a bundle of nerves and just slightly anxious considering now at 7.5 weeks away from delivery and carrying around an extra 25 pounds (today) to be displayed in HD film all over the world, I’m sort of nauseous. I’m vain. Sorry.

Filming begins tomorrow at Emory where they’ll cover some of what my volunteer work entails as I meet with patients and families in 31 ICU. The same Neurosurgical ICU where I was a patient 2.5 years ago myself. In mid-July and what I can hope is not too many more pounds, they’ll film our family at our house. Hopefully I can get all the laundry folded and off the dining room table by then, but this is when we’ll do our sit down interview with Sanjay Gupta. On July 23rd, they’ll film us at the Southeastern Brain Tumor Foundation’s 12th Annual Race for Research where I’ll be attempting to run the 1 mile “walk”, or so is my goal today, but will likely walk to save face.

The piece should air right before our baby girl arrives the first week in August at which time you’ll find me in the corner of my living room watching between my fingers covering my face.   

Never in a million years did I ever imagine receiving a brain tumor diagnosis and having to face the gut wrenching reality this diagnosis delivers. But does anyone? This has been a diagnosis that’s challenged everything as well as forced us to face my mortality. Our lives were and are forever changed. Yet, with all that said, how could I have known that what began with me sitting alone in a small patient room staring at my MRI films glowing on the wall as a surgeon informed me, in no uncertain terms as he stood watching my reaction, that “Yes, you have a brain tumor”; that the diagnosis and subsequent experience would end up transforming our lives in such a positive manner. 

So today, after facing all the ups and downs, challenges and moments when we couldn’t imagine how we were going to put that next foot in front of the other, we are given an opportunity to share it all and put a face on our journey. We are honored. I live with no regrets about our journey and with unwavering certainty I will readily admit that I would never change any part of this experience and wouldn’t change anything.

As we’ve adjusted to our normal that is so entirely not normal to so many, but completely normal, routine and ordinary now for us, the opportunity to publicly share this journey and experience gives us pause to reflect on how the interest taken in our journey can ultimately benefit others.  

Through my own eyes and my own perspective, I’ve attempted to shed light on the brain tumor and patient experience. Along the way, whether it be through my volunteer work at Emory in the hospital speaking with other patients and families, interacting online via email with strangers affected by brain tumors, or working as a Board member for the Southeastern Brain Tumor Foundation, I’ve come to understand and respect all facets of this journey. I hope by sharing I’ve managed to provide a view into what may be an unfamiliar world and perspective and I hope I can continue to do so through the CNN piece.

Thus far, I’ve approached writing and sharing here on the blog as a mechanism to document and share with whomever wants to read and follow. However, it’s always been about personal documentation for myself and my children. From the good, the bad, the beautiful, funny, ugly and downright shocking; writing has served as a very cheap and reliable form of therapy. Your comments, support, encouragement and readership have been unsolicited and appreciated benefits to my honest purging. Thank you. As I contemplate how much broader and larger of an audience our story will touch I am overwhelmed.   

While I continue to view the patient experience as a rather lonely journey, I know at the end of the day that I am not alone and for that reason, this opportunity to share our journey in such a public forum is a privilege and not something that we take lightly.   

It’s our hope as a family that this piece will show what it meant for us to keep trudging through an overwhelming abundance of shit to not only physically but emotionally overcome and how we’ve managed to get to where we are today.  

While the path and approach to facing my brain tumor may not be an approach that is for everyone, we hope that in the very least this coverage and piece will bring visibility to brain tumor awareness and the challenges this diagnoses brings to individuals and families.

We hope in the end we can inspire countless patients and families to come out from the shadows with a spirit to move forward as we have. By no means has it been easy to get to where we are today and the future will always be tenuous, but as I know we are not alone, so should every patient and family know that they are not alone.  

It will be a transition for all of us to share our life with my brain tumor in such an open public forum. A forum that is vastly larger than where I have shared within the confines of this blog.  

Paul and I will need to sit down and figure out the approach we’ll take in discussing it all with the boys and to what extent we can appropriately explain my brain tumor to them without freaking them out. Yet, we’re comfortable that in the end it will be a natural process sharing with them and that we’re likely over thinking it all.  

Once all the cameras are gone, the piece has aired, I peel my fingers away from my eyes, our daughter arrives, the school year begins anew and our lives settle down; we’re confident we’ll once again find ourselves ensconced in our freakishly normal lives once again.  

Wish us luck.