Thursday, October 11, 2012

Still Waiting


Good morning. Unfortunately, I only got 7 hours of sleep. This isn't going to bode well for my lingering cold, but I'm all amped up. Even as I write it I know I sound like a brat. Lots of people would love to get 7 hours of sleep, and here I am complaining. Sorry. Just ignore that :)

Thoughts keep running through my brain, I even imagine the synapses firing as I think. I'm highly tuned up. On my disk of the Dopa PET scan there are several images, and series of images. On the Dopa PET scan UNCORR it shows a bright white area which is not exactly located in the tumor area, but near. That's terrifying. Is it a new tumor area? On the Dopa CT the whole brain is black and grey and I can see the tumor resection area but I can't definitively see Herman. Herman, according to some Google research, should show as black, unfortunately, the tumor resection area is black as well. I'm sure the technicians have special tools to analyze my brain, but on our laptop we're just laymen trying to make sense of some advanced technology. One of the images on the disk is a side view showing either a plate in my brain spanning the entire left side of my skull or perhaps the synthetic dura mater, and the five screws that are attaching my skull together. If that's not nauseating I don't know what is. One of the screws which is located at my left temple makes a lot of sense, it's an area that has pain sometimes and is still raised, and always tender. Of course, I'm just mumbling. A raised area or a little tenderness is nothing compared to another brain surgery.

This morning, I woke up and grabbed a glass of water. When I went to get back in bed I racked my skull on the headboard. It hurt, but all I could think of is that I'm going to need to be much more careful because if I get the brain surgery, bonking my head will be astronomically worse. I'm so grateful that I've been able to go 2.5 years without another brain surgery.

I'm nervous for the report from the Dopa PET, and anxious, but at the same time it's wonderful to be floating in limbo. In this moment, I still have the possibility of no discernible tumor. Without the definitive answer, I still have hope, still the possibility of a miracle, of having been healed. I'm a very lucky to girl to have so much support. I've had help working on my supplements, figuring out new things to attack gliomas, I've had prayers from people from my hometown, my country, the world. I have had the support of friends, acquaintances, strangers, even the lady at Seattle City Light who asked why I was headed out of town - I gave her a brief synopsis and she said, "Oh sweetie, you just remember that Lynn said you're going to be just fine. I can just feel it." We laughed for a little bit and I thanked her. I get support from literally every avenue of my life, and I appreciate it SO MUCH.

On another note, I was talking to my dad about the independent review of my MRI's (I wrote about it a few posts back), and I need to clear up a couple of mistakes. Apparently, the gentleman who reviewed all of my MRI's did know my type of tumor, and he didn't say that the tumor was exactly the same he said something like, "There is no clearly discernible change in growth." Anyway, I just want to report things accurately. It doesn't change the message from my post, or the meat of the issue. It still looks very odd that UW was pushing me to do radiation. So much so that they were calling me at home to clarify any questions that I might have, or fears. They wanted me to come in and get a face mask fitted so that I could see that it isn't that scary to do radiation. I felt like they were trying to get me in with any trick up their sleeve. Crazy. Why would they still be pushing me when the tumor was stable? Why not wait?

Anyway, no need to beat a dead horse. Thank you again for all of the continued support, I truly appreciate it very, very much. Fingers crossed for a miracle, or as my dad likes to say, "It wouldn't necessarily be a complete miracle, you've worked very hard, so it would be a mix of both." I'll take that compliment :)

1 comment:

  1. Oh sweetie, you just remember that Meghan said you're going to be just fine. I can just feel it!!! xoxoxo.

    ReplyDelete

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