Saturday, July 16, 2011

This is your brain on Gamma Knife

My life is as stagnated as this blog. In 6 weeks I have gone from getting up early every day to run my house, care for my kids, bang out routines at the gym, hang with friends and cook fresh healthy dinners from natural ingredients... to laying on my couch with a neck pillow, getting my chores done in increments between dizzy episodes. My life was simple, but it was mine, and I want it back.
Last week I flew out to NIH for my biannual MRI's. I assumed these headaches would be explained away by a sports injury. I would continue to nurse my neck and take Excedrin, focus on yoga and jogging, and then slowly ease my way back into my routine, back into my life.
Instead I was told that one of the brain tumors I had treated with Gamma Knife has doubled in size in the last 6 months and introduced to this image...
The bottom images are 6 months ago, and the top images are now. The left images show the tumors themselves, and the fact that they look black inside is good, tumor necrosis has set in. However, the images on the right show the swelling and fluid around the tumors.
Yes, that top right image is my brain now... and no I am not on drugs. Doesn't it remind you of those old anti-drug campaigns? "This is your brain... this is your brain on... radiation spillage?"
Yes, somehow, radiation spilled into my brain and a huge area of it is crazy swollen. I have no further information until my GK doctor gets me in this week so I can show him the MRI's.

The doctor I see at NIH for the NF2 Clinical History Study said "I am afraid for you." Honestly, that is a bit disconcerting coming from a man who sees worst-case-scenario patients on a daily basis. Apparently the swollen area has a bunch of nerves that control... vision. Yes, my vision is now at high risk.

I can deal with a lot, and I will continue to do so. I cannot even fathom being blind and deaf but the idea terrifies me. I think of how hysterical I was when the power went out and I couldn't find Paul for a few minutes. Everything was pitch black and no matter how loud I called out I had no idea if anyone was coming for me. I sat down and curled into a ball until I felt Paul's hands touch me, and then I just hid in his arms until he lit a candle and shadows lit up the walls. How would it feel to never escape that darkness?

I have to deal with this as I always do, I compartmentalize, and put things away, and just don't deal with them. Dwelling on a hypothetical situation is a waste of time, and I have half-convinced myself that I am being dramatic, and that any day now I will get my life back. But as day turns to night and another day of baby stepping through my chores passes, I can't help but glance at the fear edging my mind as I go about my business.

So, I am on steroids to hopefully bring down the swelling. I am to see Dr. Duma ASAP and have another MRI in 3 weeks. If the swelling or radiation has spread, then I am proverbially f*cked. At that point we would discuss "options" and in the meantime I have been sent home to let my radiation... marinate? I am a total hermit as of now, I am afraid to drive in case I have a dizzy spell or just suddenly go blind. I am bored and feel guilty for trapping the kids when they should be out enjoying their summer vacation. I am consciously forcing myself not to lay all of this on Paul, and trying to do nice things for him whenever I can because I don't want our family to revolve around me, and also because he is an amazing person and pleasing him makes me happy. So today I rest, and come Monday I don't care how I feel I am going to get a little piece of my life back. One day at a time, I will get it back.



8 comments:

Cindy said...

You are in my prayers. This will resolve.

kim said...

You are in my thoughts and prayers Olivia. You are an awesome woman with knack for life.. Please keep u's updated.
Xoxo Kim M.

Winny said...

Olivia...you have no idea how much I admire you. Surprises are not an option for us. Hand over all this to your God and let Him comfort you, He will know what to do.

Major hugs....Winny

Jaime said...

Olivia, you never cease to amaze me. you attitude, your spirits, your fight.... You are incredible, and fabulous, never forget that, even fabulous people are allowed to be scared sometimes, BUT, something tells me honestly and truly, this will all work out. I have very strong feelings that this will be resolved. I will keep you in my prayers. Just keep swimmming Nemo, take one day at a time, take baby steps and don't feel bad about it, and sometimes, it's even ok to take a day off! Put yourself first for now, so that you can get better for Paul and your children. Love you girlfran!
Jaime C~ xoxoxo

Daniel Knodel said...

Oliva, I really like your blog. This is a extraordinarily synergy of medical facts and artistic expression.

I experiences similar symptoms as you describe after I underwent CK near by brainstem. That is the trade-off from choosing radiation treatment over invasive surgery. You spent no time in the hospital. But will need to sleep at s great deal more during the day after having radiation in the brain like this. You will be dizzy and feel sick. It takes about three years before you start to feel back to normal again. I experienced sounds when I moved my eyes, and saw stars and haze, and my eyes were sensitive to light too.

You will need to take some time to heal. It will take time. The swelling gets the worse about 6-months after the radiation, and gradually decreases over the years after that. You will need to adjust. But you will feel better in the long run. Your tumor will probably even shrink in the next two years.

You seem sharp and alert in your writings. The location of the tumor would effect or you memory and thought processing if it were a problem, and not your vision, which is in the back of the brain in the occipital lobe. So hang in there. You will get better.

Daniel Knodel said...

Oliva, I really like your blog. This is a extraordinarily synergy of medical facts and artistic expression.

I experienced similar symptoms as you describe after I underwent CK near my brainstem. That is the trade-off from choosing radiation treatment over invasive surgery. You spent no time in the hospital. But will need to sleep a great deal more during the day after having radiation in the brain like this. You will be dizzy and feel sick. It takes about three years before you start to feel back to normal again. I experienced sounds when I moved my eyes, and saw stars and haze, and my eyes were sensitive to light too.

You will need to take some time to heal. It will take time. The swelling gets the worse about 6-months after the radiation, and gradually decreases over the years after that. You will need to adjust. But you will feel better in the long run. Your tumor will probably even shrink in the next two years.

You seem sharp and alert in your writings. The location of the tumor would effect or your memory and thought processing if it were a problem, and not your vision, which is in the back of the brain in the occipital lobe. So hang in there. You will get better.

Olivia Hernandez said...

Thanks for the support and positive thoughts guys!
As I begin to absorb the news I have calmed down a bit and I too think deep in my heart that this will resolve.

Daniel this si the info I was told by my doctor this morning when I emailed him for clarification:

The tumor causing the problems is located in the atrium of the right lateral ventricle. This is a part of the ventricle. The visual tract fibers form one of the boundaries of the ventricle in this area. The fibers that are here allow you to see the left part of your vision (in both eyes).

I have dealt with swelling in the past as well, and have actually also had a brain stem tumor radiated, but with GK at Hoag. I really want to thank you for introducing me to Dr. Adler because he has saved me from surgery twice now with CK and both treated areas resulted in tumor shrinkage within a year. I had similar swelling issues and continue to intermittently, but I agree with you that it is better then surgery!

This issue happening now is a bit different, they don't know why such a large area is being affected around the tumor, I think it is radionecrosis after some research. I just have to stay off of Dr. Google and wait to see my Gamma Knife neuro, hopefully today or tomorrow! Thanks for the support friend!

Sarah said...

Love you Olivia- It seems we will have even more to talk about Saturday. Please remember, you are not trapping the kids, you are just being cautious.

You handle all the things that come your way like a very skilled ninja. As always you are a great role model on how to deal with the sh*t that we're faced with. Your candor and strength has helped so much with my own journey.
xoSarah

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