I thought it was weird when the doctors used the term, "You don't have tumor mass." It seemed to be oddly specific terminology. It just didn't sit well at all. I always get the copies of the radiology reports and of course, when I opened the mail today (after getting back from my new GP appointment), I read the report. This is the part where my heart sank...
"New ill-defined subtle increased F-DOPA uptake is noted in the posterior aspect of the left parietal resection cavity. Corresponding to T2 and FLAIR hyperintensity signal surrounding the resection cavity which is noted on the MRI. Visually F-DOPA uptake is below to the contralateral striata F-DOPA uptake."
Now I'm in the process of clarifying with the reviewers of the scan to see if I may not have "defined tumor mass" but instead I might have an area of tumor cells. The area of the tumor cavity shouldn't be lighting up like that. I'm very concerned. This is just like having tumor growth on the MRIs but the doctors still say "stable" because the growth isn't that much. I don't like being manipulated. I want to know what's going on in my brain. I need to know how hard to work, or if the things I'm doing are just the right amount.
I'm irritated, and concerned. Hopefully there's an easy explanation for the discrepancy.
Oct 15, 2013
Oct 13, 2013
Degrees of Separation
Sunday morning homework completed...
I remember the first time I experienced how small the world truly is. It was in the summer of 1997; I was an exchange student in Costa Rica. My friend Talia (another exchange student from Irvine, CA), and I were walking down the steps at the San Jose mall when we crossed a woman coming up the steps. Talia and the woman locked eyes and got very excited, they started laughing and giggling, looking around in disbelief. It turned out she was the mother of a Talia's schoolmate. Unbelievable. The world is so small at times, and yet at others so incredibly immense.
People come in and out of our lives and we have the ability to learn so much from each interaction, each situation. I love the fact that the brain tumor world is very small, but beyond even our group there is a great divide. There are those who (for whatever the reason) are solely following standard of care, and there are those who are searching outside the box for the cure that we've been told doesn't exist. Living outside the box is definitely exhausting, it's a mighty journey, a treasure hunt. The reward is so great, though, that once you start looking you can't stop yourself from making it your life's work. It consumes you.
I love my other treasure hunters, and I appreciate them so very much! I learn from you, I feel connected to you, I want you to win, I want us to conquer, and make it to the mountain top. There is no way I could manage this ongoing battle without all of the help. You brain tumor/cancer fighters are very smart, very hard working, and all along you've been having fingers, tools, devices, chemicals, and radiation in your grey matter. You impresses me to no end. Unlike other cancers/issues, our troubles are in our brains. Kinda important territory when trying to read/research/comprehend/remember.
On another note, found out today I'm losing my health insurance (Costco's small business health insurance). Apparently, the whole system I'm in is becoming defunct because of Obamacare. I thought we would be able to keep our health insurance if we liked it? What the heck?! It looks like I'll be moved over to Medicare. Hopefully I get to keep Dr Liau, she really has been my saving grace.
So here's a cool story. Absolutely random. I received an email Friday night from one of my closest friends. The subject line was, "Amazing" and the body of the email contained only a link. Confused, pretty sure it had to be pictures of kittens or something random that would make me smile, I clicked.
As I was reading the blog post (some time into it), I realized they were talking about me. Woah! I'm not used to reading about myself, I'm used to doing the writing. I was so humbled, and blown away. Robyn, the author, is such an engaging writer. The whole story, especially when reading it from her perspective, is truly amazing, just like Libbey said.
As I was reading the blog post (some time into it), I realized they were talking about me. Woah! I'm not used to reading about myself, I'm used to doing the writing. I was so humbled, and blown away. Robyn, the author, is such an engaging writer. The whole story, especially when reading it from her perspective, is truly amazing, just like Libbey said.
I remember the first time I experienced how small the world truly is. It was in the summer of 1997; I was an exchange student in Costa Rica. My friend Talia (another exchange student from Irvine, CA), and I were walking down the steps at the San Jose mall when we crossed a woman coming up the steps. Talia and the woman locked eyes and got very excited, they started laughing and giggling, looking around in disbelief. It turned out she was the mother of a Talia's schoolmate. Unbelievable. The world is so small at times, and yet at others so incredibly immense.
People come in and out of our lives and we have the ability to learn so much from each interaction, each situation. I love the fact that the brain tumor world is very small, but beyond even our group there is a great divide. There are those who (for whatever the reason) are solely following standard of care, and there are those who are searching outside the box for the cure that we've been told doesn't exist. Living outside the box is definitely exhausting, it's a mighty journey, a treasure hunt. The reward is so great, though, that once you start looking you can't stop yourself from making it your life's work. It consumes you.
I love my other treasure hunters, and I appreciate them so very much! I learn from you, I feel connected to you, I want you to win, I want us to conquer, and make it to the mountain top. There is no way I could manage this ongoing battle without all of the help. You brain tumor/cancer fighters are very smart, very hard working, and all along you've been having fingers, tools, devices, chemicals, and radiation in your grey matter. You impresses me to no end. Unlike other cancers/issues, our troubles are in our brains. Kinda important territory when trying to read/research/comprehend/remember.
On another note, found out today I'm losing my health insurance (Costco's small business health insurance). Apparently, the whole system I'm in is becoming defunct because of Obamacare. I thought we would be able to keep our health insurance if we liked it? What the heck?! It looks like I'll be moved over to Medicare. Hopefully I get to keep Dr Liau, she really has been my saving grace.
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