My youngest sister, Kelli, later recounted the conversation she’d had when Karen told her the news of her plans.
“Are you sure you want to do this?” Kelli asked. “What if it makes things worse?”
“It can’t get any worse,” Karen replied.
“But still, isn’t the devil you know better than the devil you don’t?”
Typical of Karen, her response was terse and matter of fact.
“You don’t know my devil.”
I wasn't familiar with that expression, "The Devil you know..." but it resonated with me.
The sister had the surgery, and it worked. She spent the next 15 years free of seizures and meds. But then she had a massive brain hemorrhage at the age of 57 and died.
I assumed there was no way to know what the chances were that she still would have had the hemorrhage if she'd never had the surgery, but that's not the point. I don't know what the point is.
A friend of mine from high school is getting her PhD in biomedical engineering, so I thought I'd talk about my decision with her. She said the first question I should ask my doctor is, "What is the risk of cancer?" I could ask him, but I think I have a pretty good idea what the answer is. "We don't know." It's too soon to tell.
I know he thinks it's safe though, that's his opinion. But it's not Nancy Klimas's opinion, who's told her patients not to get stem cell transfusions until more is known about XMRV. I tested positive for XMRV. XMRV definitely means a higher risk of cancer anyway. And then there's this scary quote from Hilary Johnson:
"Why not study something about the disease that is actually quantifiable? Why not investigate why gray matter atrophies and blood perfusion in the brain is remarkably reduced? Or why spinal fluid has protein in it? Or why so many people with this disease get lymphoma? Or have virulent, active HHV6 and HHV6-A infections? Or have severe Natural Killer cell deficiencies? Or are dying in their 40s and 50s?"
"Four days later you're finished, 50 million cells, go home" "One of the interesting things...they sleep for 30 days..." "To me it's almost like they're being reborn" "They say this is wonderful sleep." "Wesley, he slept for about 30 days, then he just got up and went back to school."Wesley is his stepson by the way, who's case Dr. Cheney kept comparing to mine.
Schopenhauer had said that -- that life was to be perceived not as a book you would write but as a book already written, something to be gotten through, so as to detach oneself from suffering, which was an outside thing, really; not actually in the text. Everything was to be accepted.
"Irony is so privileged," Mark said. "it's what happens when you don't need to do anything to survive--it's when the things you do have nothing to do with survival and you spend forty million dollars to make Steve Zissou and the Atomic Submarine or whatever it's called."