All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome and Lhermitte-duclos Disease?
Monday: I had an appointment for a PET scan and a PEM scan. I wasn’t clear exactly what was going on when I got there because I thought I was just having a PEM scan, which I affectionately call a “glorified mammogram”. I arrived at 8:30 and was shown to a room that had a recliner in it. I thought, “Hmmm. This is already unlike any other medical thing I’ve ever had!” and the technician gave me the instructions. First, she had to check my sugar (thankfully I had great veins that morning!) and it was 102. I asked her if that was high, and she said anxiety can make it go high but it wasn’t too bad. Whew. Next, she brought in the radioactive sugar and said that it was time. Dun, dun, dunnnnnn. I didn’t even have a clue what that meant! Would I feel anything? Would it hurt? She put it in the IV and then said I couldn’t move, to rest on the recliner. No talking! No playing on my phone, no reading, no nothing. Just relax. BUT GUESS WHAT HAPPENED? I totally had to go to the freaking bathroom. I could not relax for 30 minutes at all because I was worried. Plain worried. The technician got a bit snotty when I told her I needed to go (her response was, ‘Well, I’ll give you permission if you must, but we can’t wait because the sugar is already decaying’…Whut the freak?) Anyway, I somehow made it through the 30 minutes and when she came back into the room and said, “You can move now” it took all my restraint to not r u n to the bathroom. #RealTalk.
After all this, I had to wait another 30 minutes to percolate, I guess. 🙂 Was finally taken into the PET CT, which wasn’t a big thing because thanks to Chuck (what I used to call the brain tumor), I’ve had plenty of them. Since I was still radioactive right after this procedure was the PEM scan, but can you believe the test was done at the end of a hallway? There were people (read: a MAN!) walking into another room so he could totally see me taking my Dairy Queens out! There was this accordion barrier thing to “shield” me but it was still totally a wonky set up. I had to endure 16 minutes of this on each “side”. Weird. Are you with me? (As it stands right now, I haven’t heard from the surgeon. No news is good news, right?)
When I got home I had to stay away from my nephews for 4+ hours, then as I was detoxing I got 2 huge migraines. Just crazy talk, you know?
Wednesday: My neurologist has been on medical leave. Not a big deal to me, because for the most part I’ve been stable. Ha. But I have weaned off the gabapentin and lowered the topamax because I really wanted to know what life is like not on those meds. I knew the gabapentin was for pain and the topamax was for migraines. And, I hadn’t really been having either (for the most part) and since Dr. D was on leave, I just was going to take care of my biz like the champ that I am!
I called the office on Tuesday and left a message so it could be documented that I had discontinued the medication. Yesterday morning I get a call asking if I can come in at 2 PM to see the neurologist they have filling in? Um, sure. I guess. When I met this doctor, come to find out she knew the doctor who performed my craniotomies! That was kind of a nice thing. But, she told me some things that were a tad disconcerting: I did have an abnormal EEG after all (I could never get a straight answer from Dr. D about this), and I must take the Topamax twice a day because I am at risk for seizures because of the scar tissue in my brain. Once a day (I had taken it just at night) is not enough.
Today: I have PT in a few hours. I’m nervous. I wonder if it’s going to be awkward like it was a few weeks ago. Let’s hope not. I hope we can continue to have a good working relationship.
OK dear readers, this was my week. How was yours?