Revised expectations
It has been a long week so far. I'm so happy it is Valentine's Day - Mom's birthday. I plan on it being completely her day.
We have spent the past two days at the hospital, being presented with lots of information. There are Big Decisions to make and no clear cut answers regarding the next steps in my treatment. I wish there was a clear answer - so do the doctors. But there are two schools of thought about what to do next - localized radiation only to the area where my tumor showed up versus radiation to my entire brain to hopefully give the best chance of killing all the microscopic disease that's looming around. Localized radiation means less damage to my brain, but more risk we have mets show up and we have to do more surgery or radiation down the line, probably even whole brain at some point. With whole brain radiation comes a very real risk of short term memory problems and increased cognitive difficulty over time. So. That's what I am sitting with.
My energy is lower this week as I am tapering the Decadron - they don't tell you this, but it turns out the steroids really just wreck you. I'm feeling so relieved after meeting my new radiation oncologist - she really put my mind at ease, just telling me all these side effects are related to the steroids and not the brain surgery. Heavy legs, swollen face, jittery, nervous... The list goes on - it is all normal at these doses - and it sucks. I'd do anything to feel like myself for a day.
So, that is the state of the union right now. I had a great weekend, seeing old friends, eating a ton of good food, and getting out to Longwood Gardens to enjoy spring in the greenhouses. It felt like a mini vacation. I can't wait for a real vacation. I can already picture turquoise water and walks on the beach all day.
We have spent the past two days at the hospital, being presented with lots of information. There are Big Decisions to make and no clear cut answers regarding the next steps in my treatment. I wish there was a clear answer - so do the doctors. But there are two schools of thought about what to do next - localized radiation only to the area where my tumor showed up versus radiation to my entire brain to hopefully give the best chance of killing all the microscopic disease that's looming around. Localized radiation means less damage to my brain, but more risk we have mets show up and we have to do more surgery or radiation down the line, probably even whole brain at some point. With whole brain radiation comes a very real risk of short term memory problems and increased cognitive difficulty over time. So. That's what I am sitting with.
My energy is lower this week as I am tapering the Decadron - they don't tell you this, but it turns out the steroids really just wreck you. I'm feeling so relieved after meeting my new radiation oncologist - she really put my mind at ease, just telling me all these side effects are related to the steroids and not the brain surgery. Heavy legs, swollen face, jittery, nervous... The list goes on - it is all normal at these doses - and it sucks. I'd do anything to feel like myself for a day.
So, that is the state of the union right now. I had a great weekend, seeing old friends, eating a ton of good food, and getting out to Longwood Gardens to enjoy spring in the greenhouses. It felt like a mini vacation. I can't wait for a real vacation. I can already picture turquoise water and walks on the beach all day.
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