Although I am out of the hospital, I am nowhere near 100% in any way. We retrofit our house so that for the time being, it's easy for me to shower. We get a handlebar for me to grab onto getting in and out, and a bench of sorts for me to sit on, so I can wash and more or less keep my head above my heart.
I'm supposed to continue doing physical therapy at home, and go to outpatient occupational therapy.
I think it is about two weeks after I leave the hospital that I go see the surgeon for a follow-up. We're hoping that we will find out how bad my tumor is and what other treatment I will have for it.
The first thing the surgeon does is ask me how I am. Duh! Then he asks me to walk for him. As I step with my right, and drag my left a little, he seems impressed with his work. I walk like a 4-foot Frankenstein! I've even got the stitches in my head!
My husband and sister are present at this post op visit, so they can ask questions, and help remember what he says. He describes my tumor as "trying" to become malignant. The biopsy reveals it's an anaplastic oligodendroglioma. Anaplastic means some malignancy was found. Oligodendroglioma refers to the part of my brain that's affected.
Doctor says that if the tumor has chromosome deletions a.k.a. bad DNA, then it should respond well to a relatively new chemotherapy called Temodar. The good news about Temodar is that it comes in a capsule. At this time I figure chemotherapy will be a cakewalk. Doctor also says I will probably need radiation in the future, but not right away.
I think it's when I visit the surgeon that I'm told he thinks he got a 95% resection, meaning he thinks he got 95% of my tumor. Good news. It is near impossible to get all of a tumor, though, which is why I will need therapy and frequent MRI's.
I also visit a neuro-oncologist, and another neurosurgeon to discuss therapy. It turns out my tumor has the chromosome deletions, and both doctors agree that just the Temodar should do.
So I start a regimen of 24 cycles of Temodar five days a month, with monthly blood tests, ironically to see that I'm healthy enough to take my chemo. I also get anti nausea meds. They will come in handy.
Although I have been advised against it, I look my my tumor on the web, and look up stories of other survivors. I am disturbed by what I read--stories of multiple surgeries--losing basic functions. Statistically, folks with my kind of tumor live an average of 10 years.
This will be the first of many reality checks I will make with my illness.