Tuesday, May 25, 2010

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.


hrw102779 said...

Mo Fo better no be getting to comfy in their!!

Felicity said...

That's f'ing horrible that the people at NIH weren't forthcoming or were misinformed. I hope everything goes well for you!!

Olivia Hernandez said...

Oh no, don't get me wrong, NIH does a great job. But they are a clinical study, I am there for there benefit and not mine. The doctor there just does not consider slight growth to be an issue, but my regular doctor was able to compare the MRIs with MRIs from 2 years and not just 6 months ago and see all the growth. The size of it is not a concern and that is I think all NIH was saying, especially since they do not recommend radiation therapy in NF2 patients given the higher risk of malignancy. So if I weren't having it radiated I would indeed have more time... more time to let it get big and hurt me LOL no thank you!

Olivia Hernandez said...

their benefit, not there... sorry pet peeve LOL

Nancy and Talley said...

Olivia, you are an amazing woman who inspire people!!! And very smart to get your regular doctor to look at the MRI too ;-)

Keep running with a smile in your face!!!


Bob Skold's this is my life . . . said...

Olivia I agree with all the posts about how amazing and inspiring you are!

Related Posts with Thumbnails