Saturday, July 10, 2010

A Little Hope Goes A Long Way

I'm not sure how to tie everything together in this post, but I'm going to give it my best shot.

My MRI showed up clean (relatively speaking). Originally, the surgeons had to take a sample of healthy brain cells as well as all of the tumor cells. This way they were able to further test the cells and determine what is causing my tumor. My tumor is composed of Glial cells. This means that our biggest concern is my current tumor location. We're watching the remaining tumor vigilantly because the excess tumor is right in against/in my speech. They couldn't remove all of the cells in that location and there's nothing they can do surgically. As the tumor continues to grow they want to radiate as soon as they need to, trying to save my language.

The doctors do believe that I will need radiation, chemo, and more surgery but they don't know when. Because they can now tell that my tumor is comprised of Glial cells they believe that although the tumor growth could come as soon as my next MRI or some time in the coming five-ish years. There is a 1% chance that I'll never need any further treatment. Not the best odds, but at least I know what I'm up against.

I'm really relieved to know that I can relax for the next three months. The plan is to continue on MRI's every three months for several appointments. If they continue to show clean results, they will shift the appointments to every four months.

The doctors explained the deal regarding radiation therapy because they believe it will the next step. When the time comes to radiate they will take multiple beams from different locations through my head pinpointing my tumor. The process will take between 3-6 weeks. I'll come in every work day for an hour and I'll rest on the weekends. During the process I will most likely lose my hair, specifically in the large area that held the tumor from the inset. There's no guarantee that my hair will grow back in the large section on the top/back of my head. If my hair does grow back it will grow back thinner, and most likely not return curly as is the rest of my head. Another concern is that radiation damages cells. It has been shown to kill both healthy cells and tumor cells in the brain, causing damage neurologically. Since the concentrated rays will be in my speech center I could see a deficit in my speech and language skills. Unfortunately, the rays going through my brain will pass through other locations which will damage other healthy cells and could even cause another tumor. Then of course there's the nausea, the burning of the skin, etc.
The doctors believe that radiation therapy is just a matter of time. So right now, I'm starting to realize that I need to really enjoy myself. I need cherish my ability to communicate, enjoy my poofy hair that's growing in thick and wavy, be grateful for every moment that I'm healthy, and let the doctors worry about my brain while I worry about my happiness. That last part was exactly what my radiologist told me, and it was such a sweet statement. I know I'm in great hands. I know it's still going to be hard, and the reality of my life is not what I was expecting, or what I was hoping, but there is nothing I can do other than live my life, being the best person I can, and try not to get too scared/depressed.

One more great thing, the surgeon, and the physical therapists told me that as soon as I feel up-to-it I can start jogging. I'm thrilled that I'll be able to run soon. A little hope goes a long way. They did say to be careful and to trust my body - not to push it too hard. The chief, Dr Silbergeld said, "Honey, you can do whatever you want!" And then he looked at Danny and said with a smile, "No cleaning, no cooking, or work."

Oh ya, and they tapered off my anti-seizure medicine! In two weeks I'll be pill free! It's all about the little victories!

4 comments:

  1. This looks like wonderful news and I am so pleased to see your positive attitude! The radiologist is right- just concentrate on your happiness! I have felt all along that you will beat this thing and enjoy a long and happy life! Stay positive and be good to yourself!!!

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  2. I just love you. Love, love, love.

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  3. Jesse, it is so magnanimous and altruistic of you to keep sharing these intimate and astounding details of your life with us. You have no idea the degree of inspiration your path gives us. The fact you are going to focus on the light makes us smile and vibe you with the brightest light ever created. I don't know how many people fit into that 1%, but I do know in my heart that you are one of them. Excellent writing. Now go do "whatever you want," honey. xoxooxoxoxox

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  4. Jesse - I love you so much. You are so special. (Aunty Lynn's helping me with this - HA HA.) I'm lost for words and praying every minute. LOVE YOU SO MUCH! Grandma GG XOXOXOXOXOXO

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