Like I Need ANOTHER Hole in the Head!!!

You know the saying "I need [whatever it is] like I need a hole in the head!" Well since Wilbur, I've taken to saying "I need [whatever it is] like I need another hold in my head!!"  But apparently, the time has come for me to get another hole in my head. :P

So here's DL:  When I had surgery in Feb. 2014, 90% of "Original Wilbur" was removed so the surgery was very successful. The remaining 10% couldn't be removed because of its proximity to some very important parts of my brain. If the surgeon hadn't stopped when he did, I could have been paralyzed on my right side and/or unable to communicate. My team didn't think I needed to have chemo or radiation at that time.  But it was never a question of "if" I would have chemo and radiation, it was always a question of "when."

Well, my friends, "when" is "now" or at least in the very near future.  It all started back in the early summer when I got the brilliant idea to take myself off my medication.  I know, I know!! You can't tell me anything I haven't already been told and I've seen the error of my ways even going so far as to set AM/PM alarms to make sure I remember to take my meds every 12 hours.  During the late summer months, I starting having "episodes" again even though they are very different than they were before I had surgery, they still feel the same when they come on.  Nowadays, I 'recognize' an episode because I get a sharp, metallic taste in my mouth and my right arm get a pins and needles sensation like it's been asleep.  After a couple of occurrences, I called my doctor and got back on my meds and made appointments for the end of September.

I think I knew even then what this all would probably mean, because I was honestly more nervous for that MRI and those results than I had been for anything else I'd had to go through at that point.  So basically the results showed that the remaining 10% of "Original Wilbur" has started to grow again. It's growing in terms of millimeters, not aggressive by any means, which is a good thing, but the growth means I can't really rest on my laurels. The longer Wilbur is left untreated, the more likely he will cause permanent damage to areas I don't want damaged.

My neuro-oncologist at Utah suggested starting chemo and radiation treatment within the next six months.  I was in tears after leaving his office.  Just because you expect something to the be the case, doesn't mean that you're ready to hear that news.  My neurosurgeon didn't see the immediate need to start chemo and radiation, especially when I said there were so many things that were up in the air in my life that I wanted to get sorted, but he still seemed to think that I'd need chemo and radiation within the next year.  I had time to process the information and talk to family and friends (several of whom made entirely rational and valid points I hadn't initially considered) and I returned to North Carolina with the mindset that I was going to get chemo and radiation over, done with, and behind me as soon as I could.

But then began the "hurry up and wait" game.  I had to find out where I could receive in-network treatment in NC (Duke), then I had to get referred to a neuro-oncologist at Duke, then I had to get my prior test results sent to Duke, and so on and so forth. Since I had in my head that I wanted to have my six weeks of chemo and radiation (per Utah) over and done with before Christmas, it was hard to wait and be patient.  Then I found out that I would have to undergo a needle biopsy before I could be seen by a neuro-oncologist at Duke and I balked.  All I kept thinking was "I don't need another hole in my head!!"  But again, cooler, more rational and logical heads prevailed (namely Amelia) and I realized that most anywhere I went would want to run their own tests on fresh samples and not rely on almost two year old tissue samples.

SOOOO.....the long and short of it is that tomorrow, Dec. 17, I'm going to Duke for pre-op appointments and having a biopsy (where yes, they will put another hole in my head) on Friday, Dec. 18.  And yes, I will be home on Saturday in time for the Cooke Family Christmas!!