June 1, 2016 I began my 27th year as a brain tumor survivor (brainstem glioma). What an amazing journey of hills and valleys it has been. An incredible gift of time, which I am so grateful for. When I was first diagnosed, mid May, 1989, my sons were just 41/2 and 1 1/2 years old. At 31, life for me was great. I was happily married to my high school sweet heart, we had two terrific boys. I had a successful career as a graphic designer, I was an avid tennis player on the traveling tennis team for our city. As far as I knew, I was in good health, until after a full year of a downward spiral of unexplained,misdiagnosed symptoms, I found myself facing my own mortality. From the moment I was diagnosed with my brain tumor, my life's journey began to change, taking on a new face with curves and forks in the roads.
Initially my emotions fluctuated between anger and relief; angry that I may not survive long enough to raise my children...I can remember looking at them, silently crying, in disbelief that this was happening. I felt overwhelmed with sadness and doubt that I would be here to raise them and share in their lives. What kind of values and morals would they have? They would never even know me. Relief, that now I finally had a diagnosis that had a name. I could go after this "thing" and I was prepared to do educate myself and go to battle with it. The rest is history...into battle I went, and have been for the past 20 years, surgeries, radiation, chemotherapy treatments...I have won many battles...but still in the war.
I've come to accept that my tumor has taken up residency in my brain (without asking I might add) but we are getting along fine since adjusting and accepting to co-exist. This is really the answer; and you know what? It's OK. Cause it's not leaving, but then either am I. I have been blessed to have watched them grow into wonderful young men and I have cherished our time together. I have hope for the future.
Brain tumor survivors are all warriors, heroes, fighting battles every day. Each day brings challenge, and meeting them is your ultimate goal. Nowhere does it say that this is going to be easy or that you have to be happy and smiling all the time. You are not expected to. One day at a time. As you go through surgeries, treatments, you and your family will meet up with the "new" you.
Accepting this "new" you and leaving behind the “old ” you will be difficult. You will get through that, be patient. It is a challenge, but you will get there. Tempting as it may be, try not to attempt to get back to who you were then, this is likely a new and improved you! Go forward to the future. You will find new challenges to replace the old ones,maybe simpler ones, and less multi-tasked. That's fine, life is full of positive new possibilities.
There really is no secret to the success of my long term survivorship, although I sure have kicked the statistics I'd be happy to share a few things with you. Stay in attack mode, be aware even when you feel good. Always remain in control of your tumor; assertive, proactive as opposed to reactive. This is my path. Education has always empowered me and always been of utmost important importance. Attend educational conferences like the FBTA offer. They are incredibly hopeful and informative. Be sure to ask questions. Attend support groups regularly.
I attended meetings even during treatments, my FBTA family truly helped me get through my most difficult times.I urge all of you to participate in advocacy to help create brain tumor awareness, if even in your own communities. Reaching out is a great outlet towards feeling empowered over your illness. Give support, get support. Get involved, let your voice be heard. KOKO.
Sheryl R. Shetsky a.k.a. Diva | Founder & President, FBTA
He who has a WHY to live for can bear most any HOW.