I was sitting at my desk, my mind wandering and racing. I needed to get out so I took a walk to Starbucks for an afternoon pick-me-up. When I returned to my office, I looked at my email and there was an email from my doctor – the results were in.
For the first time since 2008, I saw the words I’ve long waited to hear: “There is no more tumor, all is good!”
A deep sigh of relief and a weight off of my shoulders. This beast has tried and tried to bring me down, but I am far too resilient to allow that. With an amazing cast of doctors caring for me and my wonderfully supportive family and friends, I can finally say “I am tumor free” since my initial diagnosis in 2008.
This news is just the tip of the iceberg though. You see, I knew this day would come but I just did not know when. What I did know however, was that my passion and excitement for this cause was just getting started and today, I had the privilege of being a part of something great…
Stay tuned. Until then, enjoy a beer or your favorite cocktail tonight – it’s on me.
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.
Tomorrow is the beginning of a new chapter. Along with other brain tumor survivors, caregivers and the CTBTA, we are having our first Patient and Caregiver Outreach meeting. This is my moment, my opportunity to give back and aid those in need.
As I was browsing the web earlier, I read about Ethan Couch, an 11-year old who had a dream. As some background, when he was 9 years old, Ethan’s mother began to notice irregular behaviors from her son such as trembling, having sore feet, poor balance and struggling to put on his pants and tie his shoes. Tests showed that Ethan had a brain tumor which was blocking his body’s ability to circulate spinal fluid, causing hydrocephalus. I know this feeling all too well and my heart sank for Ethan. Unfortunately, his tumor was inoperable and doctors are unable to do anything other than monitor him on a regular basis. But Ethan had a wish – to attend the Masters this week.
Streelman got it right. Like him, I want to open the door for someone else and give them the hope and fight they need. Now is my opportunity for giving back and using what happened to me in my quest to help others.