I don’t know what it is about summertime, but for me, summer has now become synonymous with roller coaster. The jarring wait as I clickety-clack up the highest peaks to feel the free-fall of what lies beyond fills me with thrill, spine-tingling chills, elation and fear, making me truly feel alive.
The highest peak this summer was that the American Cancer Society has decided to publish my second children’s book, “My Cancer Days,” which is similar to “Let My Colors Out” except that it is specifically made for children diagnosed with cancer. At this time, I don’t have a lot of information to share, but as soon as I have more details and a release date, I will let you know. I am thrilled and honored that ACS believes my work important enough to publish a second book and hope that it helps even more families have the courageous conversations that are so necessary and difficult to start during tumultuous times.
Earlier this summer, I also completed a life-long dream and became trained to be a hospice volunteer. I was anxiously waiting for fall to arrive to start this work, but then, the first free-fall began.
On July 29th, I was officially diagnosed with a Chiari 1 Malformation, which is upsetting, but I’m choosing to focus on the positive aspects of this diagnosis. A Chiari 1 Malformation means that my skull is abnormally small making some of my brain tissue protrude into my spinal canal. This prevents the CSF, or cerebral spinal fluid, from flowing normally, causing pain, pressure and a variety of other symptoms that I have been living with for years. Considering both my doctor, and my husband, who is also a doctor, initially believed that I had a rapidly, growing tumor in my brain, I’ll take the Chiari any day. Next week, I will be receiving a decompression surgery at Johns Hopkins, by the best of the best, and the best case scenario is that I will be 100% cured of these debilitating symptoms by the time I am healed.
But, until then...my life is on hold. No hospice work, no volunteer work and almost no writing. I have an amazing family and wonderful friends that have really stepped up to help me through this and I am going to listen closely to my doctor’s advice, so I heal correctly and quickly. However, as soon as I get the go-ahead, WATCH OUT WORLD!!!! :D
So, for the next week, I will have my seatbelt tightly fastened, as I wait for one of the most important climbs of my life. Hopefully, the free-fall won’t be as terrifying as my imagination is making it, but you never know until you get to the top. Either way, getting a hole cut in your skull is a bit terrifying! Wish me luck!
Causes Courtney Filigenzi Supports
American Cancer Society
Army of Women