I find myself learning new limits every day. When I was first diagnosed with brain cancer, my son’s sweet girlfriend, Marissa, found a book called Life’s Mountains by Cheryl Broyles, a woman who was living with the exact same diagnosis I had.
Not only did she have Glioblastoma Multiforme, grade IV, but she had lived well beyond the 12-15 month prognosis. This was the very first book I read regarding my illness and, unfortunately, the very first time I read/heard/absorbed the idea that my life in statistics should only last less than 2 years.
I had told my doctors to zip it when it came to this information. I didn’t want some book telling me when the end of my life was going to be. Though I’m a very strong person with a strong faith in God, I knew that some very dark days were ahead of me and I didn’t need to hear the ticking of that clock in my head during those days just because some stupid book said my heart was going to stop between this month and that in this particular year.
This book was the best book that could have prepared me for the road ahead. One day I was soaking in the tub, engrossed in the book when my husband, CJ, walked in and handed the phone to me. It was the doctor’s office, confirming my referral to my neuro-oncologist at UCSF. I got off the phone and returned to my reading. Cheryl was walking into her appointment with her neuro-oncologist at UCSF ~ you guessed it ~ we shared the very same one. I knew I was in good hands.
I’ve felt pretty normal lately. I haven’t needed daily naps like I did when I was undergoing radiation and daily chemotherapy, though I’m not running any marathons either. I decided that a week in Scottsdale for a little baseball and some pool time with my sister, Susie, my mom, dad, uncle and his wife might be the perfect answer to these winter days. Though I was on chemotherapy when I went, I was feeling well and knew I would be in the best of care. Off I went for fun in the sun (HOT sun), loud baseball games, fun family lunches and dinners with friends coming by who were also in town for spring training. It was a week of hot, busy, loud, action-packed fun!
CJ and I had the opportunity to go to a high school friend’s 50th birthday party this past Saturday night. His sister and I were in the same class and were good friends as well and both CJ and I were looking forward to going. We waited to see how I would feel and were excited when I felt well enough to make the trip. It was a fantastic evening reminiscing about old times and catching up on lost years.
It was a catered affair and the entertainment was lovely, with African drums and beautiful music. We said goodnight to make our 1-1/2 hour drive home. I woke the next day with the same feeling I did after my trip to Scottsdale; no energy whatsoever. I slept all day yesterday and all day today. The words of Cheryl Broyle came to me again from her book, Life’s Mountains, and it reminded me. She explained that brain cancer isn’t just a diagnosis that the doctor’s try to keep under control. I may feel well and look well but the truth of the matter is that my brain is damaged beyond repair. Healthy brains process multiple conversations and noise and music all at one time with no problem. My brain moves in slooowwwww motion with just one person speaking to me. Nobody would know this, because I keep up just as well as the next person. If there are multiple conversations to keep track of, I’m scrambled. If there is background noise and music, I have to listen in a hyper-focused state or I will not follow. To do this for 5 minutes is exhausting, but for a few hours is just paralyzing. This explains why I am completely knocked out after socializing for long lengths of time or in loud, crowded areas. I’m having trouble dealing with this, as I just want to be “normal”, but for now, I’m thanking God that I have the ability to be there to celebrate the milestones with my friends and the vacations with my family. I kept waiting for the Olympics to announce an event for “Keeping pace with conversation without anyone knowing it’s difficult”. They never did, but hey, it was Sochi. For the record, I would’ve won gold. ;)