First the great news...I had my last brain radiation today. They asked me if I wanted to bring home the "mask." Heck no! That thing was way too creepy, and nothing I want in my house..although it would probably make or an interesting halloween costume. Hopefully this red forhead and eyelids and itchy head I developed due to the radiation clear up. I have about week left of my spine radiation. Then they'll do an MRI to see how effective it was. I also have a PET scan tomorrow, to see if there's any other cancerous activity in my body that we might not know about. So we're praying for a clear scan.
We also need prayer for guidance. Basically, I needed to make a decision...well...yesterday really.... about what chemo treatment I want to pursue. It's so hard to decide because apparently my condition is very rare and there is just very little data on it at all. For example, that Blood Brain Barrier Disruption I had written about before... "Of the four patients treated with leptomeningeal disease, two had a response to therapy that lasted 10 and 16 months. Two of the patients had progressive disease after the first month of treatment." Not much info to go on.
So my husband has been tirelessly researching option after option after option. E-mailing and calling every big name under the sun. He is just amazing like that.
We're going to see another oncologist at the Univ. of MN tomorrow morning, and I'm going to meet with the surgeon to discuss the intrathecal chemo using an Ommaya Resevoir in the brain. Then we'd also alternate that treatment with chemo directly into the spine. Here's a link to some very basic info about it.
Then I have another option of systemic chemo by pill. I personally don't have much info on that right now that I can remember enough to write about.
It's stressful trying to decide. But it's a decision that I must make with God's guidance. I pray that he makes it so clear to me I have no other option but His way.
I was also thinking that maybe I should just choose the therapy that will let me go on the most trips to really warm and really fun places. Not sure that's the best medical option, but it sounds good to me!