Wednesday, January 18, 2012

Crushing Dreams

The most frustrating thing about my doctors, is that they are truly waiting for me to die. They don't believe that there's anything that can be done to extend my life (and yet they stiiiiill want to radiate). When we discussed the lack of change in tumor size from October 25th, and January 13th, the doctors said it didn't matter. They care about the big picture. I understand that they're trained to compile the chronological MRI scans to review and observe changes, but when I held the tumor at bay for three months I didn't get a "Woop woop!" Nor did I get a, "Huh. Interesting!" Nothing. They said it didn't matter. Really? I would have appreciated a small smile, or a, "That's great! Not what we typically see here, and you can't extrapolate that to anything one way or another, but heck it's better than the opposite." It's all always so negative. They don't believe in me, they don't believe in us collectively as brain cancer fighters. I've shopped for oncologists, trying to find a better fit, but to no avail. The truth is that according to modern medicine, I'm supposed to continuously get worse as the tumor grows. I'm supposed to progressively lose my speech, my cognitive skills, my independence, my motor skills, my dexterity, my body will start falling apart, echk...everything. I'm supposed to be a good girl, a model patient, and to just give in to whatever my doctors recommend, and succumb to this cancer, and I can see how people do. When you're surrounded by professionals who handle your care, and they don't believe in you, it's hard to believe in yourself.

It is true, the brain tumor did not grow in the time period from October 25 to January 13, the doctors verified that fact today in our appointment. It's amazing how Danny, my parents and I, find this astounding fact to be something to rejoice in, and yet the doctors completely blow it off. It's sad, really. We should be jumping up and down, using this momentum to catapult us to the next phase of our Adios Hermie mission. But somehow, instead, I just feel defeated, and wiped out. I don't cry very often, probably only once every three months, but I can feel a swelling of emotion.

It was a long day of appointments, and there was a lot of information. The main point is that my oncologists, and all of my doctors for that matter, are in the business of crushing dreams. They all expect me to die, it's in their words, and worst of all in their eyes. My dream is to live, and today they just peed on that.

8 comments:

  1. I'm so so happy for the news! I've been checking all day to see the news. Keep fighting and living! You encourage me and I truly want this to work for you--in a selfish way a little bit, too. Maybe I can give it a shot if it continues to help you with your brain tumor. Hugs. I can go to bed happy tonight for you! Let's beat our tumors back. Jessica

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  2. Doctors are just people too. And we all know that doctors aren't always right! Never let yourself forget that, Jess! You really are amazing and there is a whole team of people that are celebrating Herman not growing! We really are all so incredibly proud of you and we believe in you. I know that you can do this, heck, you ARE doing this! You're fighting one heck of a fight. Let those emotions go (cry them out), you'll feel better and release those hormones, and you'll be back to your positive self in no time! You got this!

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  3. Dear Jess,
    You are amazing and keep believing in your path. The treatment you are following has been around a very long time, just not in America. There is wisdom in it, but many of your doctors might not be aware of it. On another note, my neighbor found great care at the Seattle Cancer Treatment and Wellness Center. http://www.seattlecancerwellness.com/index.html
    You have probably heard of them, but just in case.
    You are surrounded by love.

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  4. Give yourself a good cry then keep up the amazing work and prove those stupid doctors wrong!

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  5. Can't wait for the day that you give all of them a good punch in the face with shrinking Herman into non-existence! Good thing you have so many others who also believe in your dream and can absorb some of that pee for you. You're doing the right thing!

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  6. How crushing... I'm disappointed that your neurooncologists (especially Mrugala, I had high expectations for him) aren't on Team Non-Radiation. But I can't wait for you to stick it to them in 3 more months when your tumor has not only stopped growing but has SHRUNK! They'll be forced to realize their way isn't the only way.

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