You guys didn’t think things were going to smooth out and get easier did you?
So, when we went in to see the surgeon he told us he didn’t want to do surgery to repair the two potholes in my neck, because he thought it was much more important to get me into a new, more exciting “stem cell” trial. One that he wanted me to start right away. But in the week we spent waiting to find out if we got into that trial, (which we didn’t), another tumor developed behind my ear. Yes, three weeks after removing one and getting “clear” margins, a second one pops up an inch or so away from the first.
What can I say? Don is a fertile land, where disease finds hearty purchase.
But we fight on! There is another “stem cell” trial at UCLA that we are looking into and we met with the radiologist to discuss a possible FOURTH time under the mask. A lot of possible decisions lurk ahead which, quite frankly, we would just appreciate you guys making for us.
At first it was easy. There were standard, tried and true protocols backed up by mounds of research. Now… we are off the grid. There seem to be no “right” or “wrong” answers.
How does it feel? You know when you’ve been traveling a lot and you wake up in the middle of the night and you jump out of bed to go to the bathroom and you’re so disoriented you have no idea where you are? It’s like that.
Basically, most days I feel like I’m wandering around in the dark, hoping against hope that I don’t pee in the closet.
So, Monday they cut open my head again, then later in the week we meet with the radiologist to go over the tumor’s pathology to see if there’s a radiology option that may well put me in the radiology Hall of Fame, and then head out to UCLA to talk about the trial.
Are we hoping to get in? I guess? Someone asked me if I get disappointed when I get rejected for these trials and I tell them it’s hard to feel bad about not getting to be a guinea pig to a drug you’ve never heard of, that you have no idea how sick it will make you and no concept if it will help at all.
Hey, if cancer were easy, everybody would be getting it right?
Thanks for sticking with the Rhymer Family and for reading the blog. But if you find me over at your house with a glazed look in my eye… I would lock your closet just in case.