Showing posts with label Stage 2. Show all posts
Showing posts with label Stage 2. Show all posts

4.18.2012

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.

3.05.2012

Big D Turns 34


Dan tuned 34 on Saturday, and above are the remnants from the celebration. It's fun having sweets around the house, they're so pretty! Baked goods are so feminine. They make me infinitely happy. I thought I'd be all over them like a little bunny on carrots, and that I'd have to throw them away, but oddly, after sharing two cupcakes on Saturday, I had my fill. Now, I'm sending Dan to work each day with goodies for the other boys. I used to bake all the time, but stopped when I got the big C. Ever since I learned that sugar literally kills, I've cut back in a big way. It's awesome having the cupcakes and brownies around the house because it makes me feel warm, that our home is cozy and inviting. There's something about baking that just feels right, even when I've read that it's so wrong.

Things are good over here. Like I've mentioned before, we've been more relaxed about my diet which has been a lot less stressful. I'm very curious to find out at the next MRI if the high doses of artemether & sulforaphane cancel out my relaxed diet and still shrink old Hermie. It's all such an ebb and flow, there's never definitive answers until each MRI. We're walking in uncharted territory for the most part. I'm of the mindset that if Hermie grows, it will be because of my lax restrictions of sugar (sweets, wine, carbs, or things of that nature).

We were incredibly hard core from October until January. It was precise, and calculated. I can only function like that for a short while. I have to be bad, and live like a normal human from time to time. Anyway, we'll find out if I've been enjoying myself too much in about six weeks. It used to unnerve me, drive me nuts, always worrying about my choices, but luckily, with this type of brain cancer I have a lot of leeway compared to the further stages. According to the World Health Organization, "Individuals with grade 4 astrocytoma have a median survival time of 17 weeks without treatment." Jeez. Seventeen weeks is just past four months. Death? Yikes. If I was in that situation I wouldn't even play around with cheating on my diet, but since I'm not, I'm living my life allowing some happy foods, not just eating for health, but also happiness. It has taken me a bit to relax, and I might find on April 19th that it was a mistake, but hey, if I don't try it I'll never know.

I feel confident that I can cure my brain cancer, even though it isn't often accomplished. I probably sound crazy to some, maybe even to most, but just because others have heart breakingly failed, at no fault of their own I might add, doesn't mean that I will. And when I do beat this, I will find a way to dedicate my life to help others survive.

7.14.2011

MRI & Seizure Changes

Here we go, I borrowed danny's fancy phone, and i'm punching keys like a two fingered sloth.
The mri shows some new growth. They're not going to radiate right away though.

Due to the seizure, my license has been revoked. I can not drive for six months. I have to show zero seizures for six months. If i have one, the timeline starts over.

I will be on antiseizure medicine for the rest of my life.

No swimming either. I have to get used to having all kinds of limitations.

I feel bad. This past weekend danny and i signed our marraige certificate just in time for my body to start falling apart. Now i wont even be able to go visit him.

Things can sure change quickly.

Maybe i need a Rascal, you know those little wheelchairs? I don't know how else im going to survive.
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