After my initial surgery in 2014, I was released on Easter Sunday. I was raised Catholic, but I wouldn’t say I am a practicing one, which I won’t go into the details or reasons behind. Regardless, Easter does have a beautiful meaning. It is symbolic of rising up, celebrating new life and for those who believe, it is a day of miracles.
I found symbolism in being released that day. I was celebrating my new life as a cancer survivor. I was someone who had just overcome overwhelming, dangerous, potentially life-altering (possibly terminal, but we won’t go there) brain surgery. I was walking out of that hospital to return to my own home, my own bed, a hot shower and all in all, a return to a semi-normal life. My surgery had been a success in all ways possible. I felt it was a miracle. Someone up there in the heavens had watched over me. I have no doubt about that.
However, a strange phenomena that comes with the release from the hospital is a feeling of fear and unease. For days, you had that “Call Button” right next to you. If you needed anything, a nurse was right there to assist you. If the nurse couldn’t ease your fears or your concerns, well there was a team of doctors who could help as well. You were constantly monitored. It was safe.
However, after the discharge from the hospital, that all changed. You were essentially on your own to monitor everything you felt, experienced, etc. (of course, that would be different for those who required home services). Was that feeling in my leg the beginning of another seizure? Was the pain in my head just a normal side effect of the surgery, or was it something more? What if I fell? There was no physical therapist at my beckon call.
Then, there was the feeling of helplessness. I had to have someone with me at all times for weeks. It required my husband and family to all coordinate their busy schedules. My husband didn’t want to rely on someone else, but life happens – he had to work. I had always been a fiercely independent person. This was all so new and so overwhelming. However, I was fortunate to have all the support I needed.
At that point, I also had never met a fellow cancer survivor. I couldn’t turn to someone and ask, “Is what I’m feeling normal?” “Will this fear ever resolve, or will I be spending the rest of my life fearing things like another seizure, or worse even, this tumor coming back?” Sure, I talked to my nurses and doctors about all of this. They of course were kind and understanding, but I needed someone who had literally gone through this personally.
So, I began researching organizations dedicated to brain cancer and thankfully found the National Brain Tumor Society (braintumor.org). Once I learned about their fierce advocacy, research and support systems, I looked no further. I immediately started fundraising. I was less than a month out of surgery and I contacted everyone I knew asking for donations. By the next month, I was the highest individual fundraiser for their upcoming local event. I truly believe that my incredible dedication to this organization saved me from some very dark, very detrimental thoughts. I just dove in! There simply wasn’t any time to focus on negativity and fear.
I cannot lie. There were some dark moments. I am fortunate enough to say though, they did not come often and they did not consume me. My dedication to the National Brain Tumor Society (braintumor.org) consumed me instead. So much of my strength and positivity came through my work to advocate and fundraise. It was my therapy.
Of course, my treatment did not end with the release from the hospital. It would be weeks before we came up with a plan and that is a whole nother story for a whole new post.