Well the tumor board met early this morning. Not surprisingly, Dr Holt's recommendation withstood the scrutiny of her colleagues; I am proceeding with radiation therapy followed by chemotherapy. We meet the radiation oncologist, Dr Johnson, on Tuesday afternoon and the medical oncologist, Dr Keedy, on Friday morning.
They fixed my drain this afternoon. They did another ultrasound & the pocket of fluid was 8cm x 6 cm - as big as it was on Monday!
Frightening thought, I am starting to know my way around Vanderbilt University Med Center and even starting to recognize people who work there. And this has only just begun. Its starting to move fast now which makes me feel kind of sick to my stomach if I really stop and think about it. Better to keep moving and not think.
We met with the geneticist this morning & got a bit of good news. The change in diagnosis to Ewing sarcoma pretty much eliminates concerns about Li-Fraumeni syndrome. That's great news for our family! There is another genetic syndrome they will be suspicious of if the breast biopsy comes back malignant, which is called Cowden (I think?) syndrome. We will worry about that if/when it happens. I think we're taking bets, starting a pool on whether the biopsy will be malignant or not...
I'm tired today, been on the go all day pretty much. Kendall & I are going to the BlueBird Cafe tonight for our anniversary. I'm planning to go to the office in the morning. But, if I don't feel any more energetic in the morning, I will be working from here again. Yesterday I walked for 40 minutes and my leg is sore today from that. I probably walked that much today too just doing errands and the like. Hoping to get another solid 40-45 minutes in tomorrow afternoon.
Anyway, thats the latest news. I wish I could say its encouraging but they seem to feel this Ewing sarcoma is very very aggressive and want to treat it with as much as they have available.
This picture pretty much describes how I'm feeling today. I took it in Punta Gorda shortly after Hurricane Charlie came thru in 2006. I feel like part of my life is completely upside down like that golf cart. Another part is tipped on its side like the floating marina. And part of it is totally fine like the palm trees. Strange feeling to say the least.
They fixed my drain this afternoon. They did another ultrasound & the pocket of fluid was 8cm x 6 cm - as big as it was on Monday!
Frightening thought, I am starting to know my way around Vanderbilt University Med Center and even starting to recognize people who work there. And this has only just begun. Its starting to move fast now which makes me feel kind of sick to my stomach if I really stop and think about it. Better to keep moving and not think.
We met with the geneticist this morning & got a bit of good news. The change in diagnosis to Ewing sarcoma pretty much eliminates concerns about Li-Fraumeni syndrome. That's great news for our family! There is another genetic syndrome they will be suspicious of if the breast biopsy comes back malignant, which is called Cowden (I think?) syndrome. We will worry about that if/when it happens. I think we're taking bets, starting a pool on whether the biopsy will be malignant or not...
I'm tired today, been on the go all day pretty much. Kendall & I are going to the BlueBird Cafe tonight for our anniversary. I'm planning to go to the office in the morning. But, if I don't feel any more energetic in the morning, I will be working from here again. Yesterday I walked for 40 minutes and my leg is sore today from that. I probably walked that much today too just doing errands and the like. Hoping to get another solid 40-45 minutes in tomorrow afternoon.
Anyway, thats the latest news. I wish I could say its encouraging but they seem to feel this Ewing sarcoma is very very aggressive and want to treat it with as much as they have available.
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