Mo Fo the Brain Tumor

My blog has sat idly as I've run mile after mile on the treadmill and pounded out reps and sets until I've lost count on the gym weight machines. I've counted calories and stopped drinking beer completely. My reward? I've lost 2" on my waist and no longer have to hide my belly with a belt. It feels great. Having left NIH knowing I was stable, I've been running each mile with a smile on my face, thanking Goddess, and empowering each yoga pose with positive light. I've been at peace with so many things I have struggled with, and have been deeply happy.

Today I saw my neurologist, Dr. Duma, to bring him my MRI reports and CDs from my NIH trip. While visiting NIH I was never shown my MRIs, and was simply told I was "stable." I wanted to double check everything with a neurologist familiar with my case, and assumed it would be an easy visit.

See that big white spot? That really shouldn't be there. Its a tumor. Apparently NIH and myself have differing definitions of the word STABLE. I've named the tumor to make things easier, please meet Mo Fo. Mo Fo is not new, he has been there, and was discussed briefly at NIH. I was basically told it was not a threat at this time or anytime soon. In fact, I specifically remember being the one that brought Mo Fo up, and being told not to worry... for now. At 1.3 cm Mo Fo is very small, but is pushing on my brain stem already. A surgery in this area would be "brutal" as Dr. Duma said. Luckily for me, I have chosen not to have surgery, and instead to be treated with Gamma Knife. A radiation therapy that uses Gamma Rays to destroy tumors. Mo Fo is going DOWN.

I've had Gamma Knife multiple times, on multiple tumors, and each one has shrunk. The procedure involves having a metal frame, called a halo, literally bolted to your head. No joke, once I woke up too early (remind me to ask for a different anesthesiologist) and saw Dr. Duma standing there with a Black & Decker power drill, which he had just used to drill 4 holes into my skull. While I am not looking forward to the halo, the accompanying headache, or the hours of waiting while awkwardly attempting to rest... it is still a 1 day outpatient procedure. I can handle anything for 1 day!

To add salt to the wound... both my Grandma Norma and Uncle Eric died of NF2, but specifically from brain stem tumors. They are tricky little bastards, known for literally choking people out. The brain stem is ridiculously delicate, which is why we have to radiate now while the tumor is only starting to dent the brain stem, rather than wait until it is fully pressing on it and there is no room for the inevitable swelling. People who have similar tumors and choose traditional surgery usually cite the fact that Gamma Knife can cause swelling around the tumor, but surgery causes swelling too so I am not sure why that would deter them. Either way, every patient has to decide for themselves, and I've decided to have Mo Fo treated with Gamma Knife. Dr. Duma said it needs to be done very quickly, my tumors have a habit of growing fast and if the tumor gets any closer into the brain stem then Gamma Knife will not be an option and I will be facing a horrible life-threatening surgery. Not going to happen.

So tomorrow when I run I am still going to have a smile on my face. Yes, Mo Fo has got to go, but at least I have the best options possible available to me.

2nd NIH Visit

I think I have finally recuperated from our recent cross country trip. We drove up to the Bay Area, left the kids with my grandparents, and then flew to Washington D.C. for my bi annual visit to NIH. I am participating in a study of NF2 by Dr. Asthagiri which involves me flying to NIH every 6 months for the next 5 years. On this visit I had MRIs as well as exams for swallowing, physiatry, and neuro ophthalmology. Everything went smoothly and the ASL interpreters helped tremendously, proving my studying has really paid off. On the final day of appointments Paul and I sat down with Dr. Asthagiri to go over my MRI reports. As usual I was tense and concerned, especially about the tumor in my lower lumbar which I had treated with Cyber Knife last July. It had been a small tumor low in my spine not causing any specific problems. However, I knew it would grow and have to one day be dealt with. If I didn't treat it with Cyber Knife then, I would be facing imminent surgery. I rolled the dice and went in for radio surgery. For several months all seemed fine, but then towards the end of the year I experienced some localized swelling and pain. This is normal and I tried to stay positive. I was unable to walk or bend at the waist, so my local GP worked with Dr. Adler at Stanford to get me on steroids for a week, which brought the swelling down temporarily. I was terrified that the damage was permanent, but over a few months the pain dissipated. So on this visit to NIH I was to be told whether the tumor had stabilized, shrunk, or grown. If it had grown it would need to come out surgically, which is pretty low on my list of things I want to do this summer!

So Dr. Asthagiri came in and told us that the tumor had indeed shrunk... from 1.4 to 1cm!!! That is a big change in less than a year! Paul and I are ecstatic of course. I avoided an entire surgery with an out patient, painless procedure. When I had the Cyber Knife treatment I took a nap, and went for a run right after, and now 10 months later the tumor is smaller! Cyber Knife is not a magical fix all for every person and tumor, otherwise all my NF2 friends would be having it. Everyone and every tumor is different, but for me, things could not have worked out better!

After our NIH visit we flew back to the San Francisco airport and drove home with the kids. We were so happy to be home, and at night I hugged my kids just a little bit tighter. We dodged a bullet, a tiny 1.4 cm bullet!