Wednesday, April 18, 2012

Transparency

Last night, Danny went with his college buddies to bottle their personally crafted beer at a local brewery. Left to my own devices, I whitened my teeth, mudded my face, and ate a pound of strawberries. I don't need to say much about the latter choice, other than it was excessive and thirty minutes later, I immensely regretted my over consumption.


I'm anxious for the MRI tomorrow morning. I realize that what is done is done, that whatever we see is what we see, but I can't help but be nervous. I wish I could just let it all roll off my back, and live my life, then show up at the hospital and finally worry. There's no point in stressing about the results, and yet, it's impossible to avoid it.

In my semi-stressed state, I've been reading a couple of books written by doctors. One was the book titled, The Anatomy of Hope, and then the most recent is Routine Miracles. Both are giving me a better perspective of a doctor's position in patient care. It has prompted me to reorganize my appointment. Let me expand.

I've decided that I need to discuss my alternative treatment with my oncologist. Not in the glossed over fashion that we've attempted in the past, which has caused us to be brushed off. I need to get more in depth and I believe that since we've always met with my oncologist as a group, my parents, Danny, and I, our large presence limits intimacy. So, tomorrow, Danny and I will meet privately with my oncologist and explain everything that we've been doing, starting from the beginning.

We will explain that we've been doing a researched based protocol. I'm going to tell him that the research has been conducted in the Bioengineering Department right here at the University of Washington. I will tell him that we're in contact with the researchers, and that we have a friend who has already eradicated her tumor with a combination of said treatment. This friend had the same exact type of brain tumor as mine, a stage 2 infiltrated/diffuse astrocytoma, even down to the lack of co-deletion of p19-1q (he will recognize the importance of that statement).

I'm going to tell my oncologist that this protocol is not invasive, it's cheap, and relatively speaking, it is without side effects. I'm going to tell the doctor that I need an oncologist that's willing to follow my situation, and understand that I am a unique case. I want someone who is on board, and excited about the progress and fortitude with which I'm going to fight this. I'm going to feel out this oncologist and see if he truly wants to see me cured with any type of treatment, or if he is more interested in western medicine's standard of care. My case is definitely out of the box, and I'm going to tell him that I'm looking for a teammate. By having this honest and open dialog, I think I will find out whether or not I will keep him on my team. It's all about how he responds to this discussion.

I'm excited and nervous to have this talk. I think it's about time I gave transparency to my doctors, but I also understand that it could go horribly wrong. It's a risk that I'm willing to take, though, it has to happen so that I can get the best care. They need to know what they're dealing with, and I need to give them the opportunity to truly help.

After Danny and I discuss my situation with my oncologist, we're going to call in my parents so that we can all review the MRI results. I feel like the first half of the meeting needs to be intimate, and private, so that the oncologist isn't overwhelmed by all of our faces, expressions, questions, etc. I want to look in my doctor's eyes and have his full attention. I am going to lay it all out on the table, and analyze his reactions. This could be an epic success or a tragic failure. Either way, in life, I'm reminded, you can't be afraid of the answers because it's the only way to move forward.

11 comments:

  1. "So Cal" PattiApril 18, 2012 at 3:26 PM

    I love how you always "take the bull by the horns" and take control of your health decisions! Wise choice to make sure that the doctor is supportive of your decisions! YOU have the POWER to get rid of Hermie!!! Love you and will be thinking of you tomorrow!

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  2. "So Cal" PattiApril 18, 2012 at 5:49 PM

    P.S.- Thank you for your last statement above that "you can't be afriad of the answers because it's the only way to move forward"! I've been avoiding going back for medical care for several months as I felt that none of the doctors were giving me answers, but in the meantime my feet are worse and I can't wear shoes or get out of the house! Your wisdom is always a gift to us all!

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  3. This is fabulous news, and I applaud you, Jess! Take that bull by any appendage you're able, and make it see you and the direction you'd like to, and are going in! We all hope to hear good news tomorrow, none more so than you, I imagine. My thoughts are w/ you and your family.

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  4. I hope things go well tomorrow.

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  5. I think this is a really great decision you've made. I'm hopeful that Dr. M will understand and be supportive and decide to be on Team Jess, really truly like the rest of us! Sending positive thoughts and vibes for strength to stand up for yourself and get good MRI results tomorrow!!!!

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  6. I so admire your tenacity and strength. I am projecting good thoughts and great results your way today.

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  7. It will be an epic success. So proud of you. Thanks for your wisdom, kindness, and powerful words. They help me so much in my life.
    Prayers for tomorrow.
    Leisa and family

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  8. Sending you best wishes and continued strength. Your journey and how you are meeting such an enormous challenge head on and with such heart is inspiring. Though we've never met, you are in my thoughts often. Your positive outlook and perseverance has encouraged me in my own (though comparatively minor) struggles. Here's to your continued health and happiness, we're all rooting for you!

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  9. What an honorable way to approach talking to your doctor - both honoring to him and whatever his training/beliefs are...and more importantly honoring to you and your own decisions/journey. Thinking of you today!!

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  10. Love is what I am sending you. Loads and loads of love my dear friend!

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  11. sending you love
    erin

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