Reintegrating into life post-craniotomy

When we first enter the world as infants our parents hang on our every smile, giggle and wail as a clue to gauge how we feel. Our first word, first step and first time eating solid food often occur in our very own home. For brain cancer patients who have undergone surgery to remove their tumor(s), these life events are repeated and celebrated all over again. Like a newborn baby, we find everything to be exhausting, terrifying and unknown. The things we take for granted, that come so naturally to us, are the actions that become acts of extreme effort. Thinking about and listening to new information is draining. Talking takes a surprising amount of energy. At first, even picking your breakfast, lunch and dinner for your next day in the hospital feels taxing and earns a nap. You'd much rather watch a movie or listen to music so that someone else does the thinking for you. You'll never be more thankful for a catheter in your entire life, because it means you don't have to get up. That's how my new life began after a craniotomy this past September. One's senior year of high school is supposed to be a year full of celebration, and mine was. But, I wasn't celebrating in the same context as my peers. Every first I repeated after surgery was a monumental life event, and something that needed to be recorded. Even now, eight months since my surgery, I still celebrate and repeat firsts every day whether I realize it or not. For example, I made oatmeal this morning for the first time since surgery; granted, I forgot to heat up the water and breakfast turned into a soppy mess, but regardless of how the oatmeal looked or tasted, I still felt like a champion. Although the process of pouring water into a bowl seems quite simple, that's not always the case once brain cancer enters the picture. For a split second I actually had to remind myself how to pour water into a bowl yet again, and by succeeding in recalling the information needed to complete the task, I passed another check point on my road to recovery. Whether it's having enough balance to feel comfortable riding a bike again, or earning an "A" on a test, the feeling of accomplishment feels so much better the second time around because it means more to me. The aftermath of my craniotomy is more than just realizing that my thought process is slower than before, or establishing that part of my vocabulary has been erased. Surpassing expectations and making the best of both foreseen and unforeseen circumstances matters to me because they represent achievements of my new, post-craniotomy life. It doesn't matter who I've talked to, their life post-brain surgery is a completely different world. I started off with far fewer deficits from my surgery than expected and mainly had to deal with only extreme sensitivity to noise. All I had to do was avoid crowds and wear ear plugs everywhere I went, something manageable. Over time though, new symptoms cropped up. Short-term memory difficulty, right side weakness and new seizures emerged. The problem for anyone with brain cancer that has undergone surgery is that once the staples are removed and hair grows back over the scar, no one else knows the difference between you and the next person. They don't recognize that you've been reborn and need to be handled with care. Charlie Blotner, a patient advocate for the young adult cancer community, underwent a craniotomy a mere eight months ago to remove a grade II astrocytoma from his left insular region. He uses her cancer experience to help improve the patient, survivor and thriver stages of life for others affected by cancer. You can find him at Twitter.com/CBlotner and Youtube.com/mAssKicker95.