Do you ever have days when you just can’t contain your inner voice? Did you pick up the dry cleaning? Did you remember to work on science fair project ideas with your fourth grader? How about that dentist appointment that has been on your “to do list” for months? You really shouldn’t eat that chocolate cupcake.
For most of us, that little voice is a mere annoyance. For brain tumor survivors, it can be debilitating and, in some cases, paralyzing.
Take Robert Johnson, for example. Diagnosed with a pituitary tumor in 2003, he experienced crushing head pain and light and sound sensitivity before undergoing surgery that same year.
“After being diagnosed we all go through the same emotions and thoughts,” he says. “With knowledge or lack of knowledge, faith or doubt, strength or weakness, alone or together. Every single one of us after being diagnosed may have one or more of these. You have a helpless feeling. You have no knowledge of what to expect.”
Following treatment, Johnson said the voice does not magically go away as you worry about whether the tumor might come back every time you experience head pain or have a change in medications. “My mind just doesn’t shut off,” he says.
“The doctor said I was the lucky of the unlucky. I may look fine, perfectly healthy, but inside I’m fighting things.”
Johnson’s type of brain tumor required almost complete hormone replacement following surgery and the head pain and light and sound sensitivity continued. As a physical therapy aide, he does not like the term “headache” for describing the pain associated with brain tumors. He adds that the first 10 years were the toughest and his symptoms are not as severe now, 15 years later.
To combat the fears and doubts, he plays music and runs. As a boy of about four years old, he started playing instruments and now plays the guitar, bass guitar, drums, mandolin and ukulele. He also enjoys working out and has participated in several 5Ks as well as doing obstacles courses like Spartan and Tough Mudder.
Just this past summer he ran a 5K for “Heroes like Haley” in Cary, Illinois, for a girl who was diagnosed with an aggressive form or brain cancer – Anaplastic Oligodendroglioma Grade 3, in 2013 just a week after her 18thbirthday. “It was with a heavy heart I ran in the heat and humidity of the first day of July,” he says.
Another balm to his busy mind is the American Brain Tumor Association and his direct knowledge that this organization can make a difference. After his diagnosis, he found he could depend on the ABTA for information and support, knowing someone who cared was just one phone call away.
“As we go through this, an organization like the American Brain Tumor Association is there to help out with the lack of knowledge, doubt, weakness or being alone.”
Johnson has been fundraising for the ABTA under the name “The Fatheads” for about 10 years or more. Just this year, he volunteered to be a mentor and intends to become even more involved in the association.
The research alone helps keep him involved, as new drugs, imaging, and diagnosing of brain tumors is discovered “with the hope of a breakthrough for a significant change.”
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