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.

Left Awake Craniotomy. That's me!

My brother is convinced that our first meeting in Wenatchee at the Medical Center was with the head janitor, not the neurosurgeon. That should be a serious clue as to our meeting at U of W.

We're all in shock right now, and I don't even know how to begin this post. Our meeting was vastly different from the meeting in Wenatchee.

I guess I'll just start putting this all down on "paper" and you guys can help sift through the details. Sorry for the disorganization.

On this coming Tuesday morning at 5:15am I will be admitted to the U of W surgical unit. They will take me in and put electrodes on my head and put the exact locations where the laser will cut through my skull. From there they will run me through an MRI and check to see the exact brain waves so they can measure where they need to be careful during the surgical process. Once I'm put under anesthetic they will cut open my head and remove a portion of my skull. Once my brain is exposed they will wake me back up and start removing parts of my tumor. As they are removing areas of the tumor they will periodically place electrodes and conduct shocks, in areas of my brain in and near the tumor. During which time I will be staring at a computer screen answering questions about the visual stimulus, so that they know exactly what they're cutting/removing. They're trying to make sure that they don't remove any of the areas of my brain that I need to function. After they remove every possible piece of the tumor that won't incapacitate me, they will put me back under anesthesia and sew me back up. The process should last approximately 4.5 hours.

My tumor is in brain matter. They will be removing approximately a tennis ball sized area of my brain. There is a 10% chance that there will be complications that could be as mild as no feeling in the tips of my fingers ranging all the way to loss of movement on the entire right side of my body, inability to communicate, inability to read, and inability to form thoughts, and of course death.

I will be in the hospital for a minimum of three days, longer if there are complications. One week from the surgery I will have a follow up appointment where they will have results from the pathologist about the severity of my tumor. The doctors at U of W said that without the pathologist's findings from the biopsy (which we will have one week after surgery) they have absolutely no idea if I'm going to need further treatment (chemo or radiation). They have seen so many tumors, and have seen so many incorrect conjectures, that they don't even guess or assume in any way. If we find out I need adjunct therapy during that first week appointment, they will immediately during that appointment introduce me to the right people, wheel in the machinery and start my chemo/radiation.

The surgeon is removing areas from three sections of my brain, the language cortex, the sensory cortex, and the motor cortex. So, if anything bad happens during this surgery and too much gets removed, I'm going to apologize ahead of time for any anger, frustration, confusion, inability to communicate, inability to read, inability to watch TV, inability to form my own thoughts, or express myself, inability to control my movements, and inability to control drooling. No big deal.

News of record - my Chief does over 290 crainiotomies a year.