A couple years ago, John was diagnosed with brain cancer and it is truly inspiring to see what a remarkable comeback he has had since then. How did you first know there was something wrong?
I was having issues with my arm locking up for about a minute or so, and would happen about 10-20 times a days at random times. While it was locking up it I had no control of my whole right arm. I thought it had to do with my arm or shoulder so I started to stretch more and surf a little less. I started to get worked on by massage therapist which helped reduce the amount of times my arm was locking up. I went and saw an orthopedic Dr. and was diagnosed with narrowing of a nerve canal in my neck.
I reduced my massages while traveling on a trip and my arm started to lock up again. Rikki had always wanted me to get a second opinion, and luckily Rikki and I have some close family friends that are a nurse and a doctor. My arm locked up at their house one night at diner, and they sent me to see a neuro surgeon, Dr. Gabirel Hunt. He ordered a brain scan after an initial consultation to rule it out. I have never seen a brain scan before, but I won’t forget the feeling of what I saw on the screen with Dr. Hunt. The scan looked like a golf ball. The tumor had been pushing on my motor cortex causing isolated seizures in my right side. We talked a bit more and he recommended me to go see a colleague of his, Dr. Keith Black. Some of the last advice Dr. Hunt had for me to do was not to Google anything with regards to my tumor, which was some of the best advice I got during the process.
So a week or so later Rikki, my parents, our friend Dr. Ley, and I met with Dr. Black at Cedars-Sinai. We were given my options of what Dr. Black thought about the tumor from the scans. Option 1 was to either to try to get a biopsy of it, which was going to be like surgery because they would need to get quite a bit of it to be certain of the pathology, or go in and try and get out as much as possible which could possibly leave me in a wheelchair depending on how much Dr. Black would have to go into my motor cortex to get the tumor.
My initial gut reaction was to get out as much as possible because I didn’t want to take chance of the tumor growing more into my motor cortex and affect my speech, vision, and other functions. I wanted to watch my kids grow up with my wife. So I made the choice to resect as much of the tumor as possible with possibility of being in a wheelchair.
I signed up for all of the clinical studies that were available at the time and had surgery 30 days later. My best friend Darren drove Rikki and I to the hospital the morning of the surgery and two of Rikki’s best friends were so awesome to take two weeks off work and come stay at our house to take care of our kids.
The morning of surgery I had scorpion venom injected into my blood stream because one of the studies is that the venom illuminates the tumor so the Doctor has a background to the tumor versus tissue. Dr. Black was very happy with how much of the tumor he was able to get out. Shortly after my surgery, I had a grandma seizure and lost all mobility in my right side. I was admitted to the Intensive Rehabilitation Unit for 45 days to learn how to talk, read, walk, and use my right side again. It was a very humbling experience in which I will never forget.
A week after the surgery, while in the rehab unit, we found out the pathology of the tumor which was an unforgettable day. Our friend, Dr. Eric Ley came running into the room to tell us. I was very naive and had no idea what the different grades even were. From the pre surgery scans, apparently most of the Doctors thought it was a Grade 4. Having our friend Eric tell us it was a Grade 1 and explaining it brought me to tears. Rikki new a lot more than I did so she just broke down in excitement.
Currently we monitor the remaining tumor. So I have an MRI every three months to make sure there aren’t any changes. It is essentially an insurance policy to make sure if there are any changes to it we can get ahead of it. The three month check ups are nerve racking but so far so good. It has been a great feeling knowing there hasn’t been changes to it.
The support from my wife, family, friends, strangers, Doctors., therapists, nurses, and emails/letters was amazing.