GREY MATTER LIFE

I took a hiatus from writing here at Grey Matter Life that wasn’t planned. We took a 5 week road trip this summer and I wrote about it over here, school started and life has been a little busy to say the least. Writing didn’t happen although I’ve had plenty to say.

Just after the New Year, I had an email with a photo from Alex, a friend from my Charlotte, NC days. The photo was of a handwritten quote of something I had written here on the blog in 2011 that she keeps on her fridge. The note had caught her eye that morning and it was a message she needed in that moment. Turns out it was a message I needed reminding of too.

“Worrying about what you can’t control is an epic waste of time.”

Change is inevitable. Change is a part of life, growth and discovery. Change can be for the better or for the worse and often it’s entirely out of our control. My journey as a patient has changed and aspects of the path we’re on have become more complicated.

My neurosurgeon, who managed my care for the past 7 years, left Emory in August and now practices at Mt. Sinai in NYC. While I learned about his departure months prior, I allowed myself to exist in a state of denial that my entire medical team I had grown to trust and know so deeply, was imploding and would cease to exist very soon.

I’m not surprised Costas chose to leave Emory. While I was simultaneously thrilled for the extraordinary opportunity he was offered and the impact he will undoubtedly make; I was selfishly devastated. For years, almost in anticipation of an eventual departure, Paul and I would talk in hypothetical about what we would do if Costas left Emory. We emphatically agreed each time that continuity of care and trust trumps everything. We would follow.

Yet, with the reality of actual change comes an undercurrent of stress about what that looks like if I need surgery again. Among many questions, top of the list is… How would insurance work? In-network? Out-of-network? It’s easy to hypothesize, but now this is a reality. What could we afford if left with a burden of uncovered medical expenses? Brain surgery isn’t cheap. In the face of all the unknowns, I’m maintaining my surgical relationship with Costas at Mt. Sinai in NYC. 800 miles is a long way to go, however I’m unwilling to make compromises to my care.

While I am maintaining my surgical relationship with Costas at Mt. Sinai in NYC; I still needed to transition to a new local Atlanta medical team. I’ve struggled with how to articulate what that journey has been like since August as I attempted to transition my care at Emory. What words strung together would define and express the sadness, frustration, anger and disappointment of a seemingly broken, disinterested medical system that I had suddenly become a number in. How was I to articulate and do so without burning bridges? I honestly still do not know. All I am able to articulate now is that I left too.

My heart hurts to leave behind so many amazing nurses, Nurse Practitioners, PA’s and others whom I had developed such an amazing bond with. Caregivers dedicated to their patients and champions for excellent care. I miss you all and I wish the circumstances were different.

I now see a Neuro-Oncologist in Atlanta at a new hospital. I wept in her office during our first two hour appointment in August. She understood the magnitude of what it meant to start over. She understood the courage it took to trust a new physician. She was agreeable without pause to work with Costas in NYC moving forward should my status change and that was an enormous relief. She listened and respected my thoughts on my care plan and desire to chase quality over quantity and she continues to display sincere compassion for what it is we patients endure.

It’s been almost 6 months since I sat in a puddle of tears in my neuro-oncologists office. I am settled into a comfortable and genuine relationship with my new team and have discovered that my MRI sedation tag team of Jeff and Lisa is likely to be with me for every scan. Damn do I miss my Bromley at Emory but the good news is that my new crew and I get along famously and even share an affinity for swearing. In other words, we’ve become fast friends. The looming reality of my assigned 12 week MRI schedule does exist and at times does weigh considerably on me, however “it is what it is” and I need to remember:

“Worrying about what you can’t control is an epic waste of time.”

We move on. I am moving on. There are bridges to cross and life to be lived and the rest is simply water under the bridge.