As I’m writing this, a flurry of emotions are running through my mind: eager, nervous, anxious, apprehensive, hopeful. I have my three month MRI next week, my first since having the tumor removed. And for the past six and a half years, I feel like I have constantly written “in three months, I’ll go back to Yale for my follow up MRI.”
Funny thing is, as I wrote that, it finally sunk in that this is my life – while the scars have healed and my hair has grown back, I will endure continuous follow up and MRIs to ensure this beast doesn’t grow back. Yes, the emotional scar is still there. I’m a strong person, but I’ve been feeling like the past 6+ years are starting to catch up with me.
Yet, I am still hopeful that now I can move forward and put this chapter of the story in my past. Hopefully, as long as my MRIs are clear, they will continue to be spread out and the visits to Yale will become less frequent. I will need to continue monitoring myself for recurrence and the functionality of the shunt indefinitely.
When the topic of recurrence comes up, I wish I had a better response for people, I honestly do. It is a scary thought that I might have to go through this again someday. An even scarier thought, is this genetic? Will my children someday be at risk for developing a brain tumor? Will the reason that people develop brain tumors in the first place ever be discovered? I would like to think that, in my lifetime, the answer to this question will be yes, but I cannot be certain. All of these unknowns lead me to thinking and I find myself wondering about all of the “what ifs” that may someday present themselves and who will answer those questions for me.
A couple of weeks ago, the clinical care coordinator at the Yale Brain Tumor Center announced her retirement – a heartbreaking and total loss. I felt the void that very moment. Ever since July 1, 2008, her and I have developed a great relationship. She was my main source of support while I was in the hospital and during my follow-up appointments. The times that I had a seizure in my apartment, she was the first call I made. This got me thinking… what will happen when my surgeon decides to call it quits? I will need to be restrained by someone because I’ll be down at the hospital pleading with him and begging him not to go. This man saved my life and I will find it hard to trust any other hands in my brain. When he most recently told me he wanted to operate, it did not take me long to make that decision. The idea of surgery, with him, is an easy one.
Nevertheless, this whole entire process has been nerve wracking and I cannot even begin to imagine it with another surgeon. I hope and pray that the tumor is gone for good and that no further surgery will be necessary.
Reality is, no matter how hard I/we, the brain tumor community, tries not to think about all of these questions and dwell on the past, it is easier said than done. The questions are prevalent and all around us. No matter where I turn, I hear about brain tumors and brain cancer and it’s a scary thought – but I am a better person because of this experience. This life experience has taught me about how to live and what truly matters.
So when someone asks me, “now what?” my answer is, to be honest, “I don’t know”. Nothing seems certain at the moment. I will remain optimistic though, that’s a given. While uncertainty seems obvious for someone like me, I remind myself that every moment is uncertain for everyone, regardless of his or her circumstances.