My week

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?

Happy Anniversary!

4 years ago today I heard the words that forever changed the direction of my life:  “There’s something there.”

I wonder if I’ll always be moved on this date, or once I hit the 5-year mark things will be easier?

Probably not.

Just got home from lunch with a friend – it was nice to spend time eating good food, “celebrating”… I remember so much about that moment in Dr. F’s office when I got “the news”.  My friend told me where she was when she got “the call” about me.  Most of the 9 days between diagnosis and the first brain surgery was such a blur, but I remember the terror and fear.  Today, I am pleased to say that terror is lessened.

I have to remember where I was to know which direction I must go.  Forward always.


Dream a little dream

I have had some very vivid dreams lately.  And they aren’t pleasant, either.

I probably should keep a dream diary, but I always think of things like that after that fact when it’s too late.

Last night I dreamt I saw a new doctor; she was female, short grey hair.  I had not seen her before, didn’t know her name or anything.  It was a referral for brain stuff, yet she told me she recommended me for the esophagectomy and I needed to call the surgeon as soon as possible.

I remember running after her in a hospital and asking her about my head.  She didn’t even want to discuss it.  Very dismissive.

Isn’t that weird?  What is my subconscious telling me?  I haven’t heard anything from the surgical department, so I know that nothing has been approved yet.  And although I’m having a lot of symptoms and I am dreading trying to be at peace for whatever comes next.  I don’t really think I have freaked out, and for sure I am not thinking about my esophagus before I go to bed at night.  If I think about anything Cowden Syndrome related before I go to bed at night it’s usually my Dairy Queens.  Or my balance and vertigo (which vertigo is happening again, but how do I bring it up to PT?)

I remember months ago I had a dream where I got stung by some type of insect or something.  I knew I had to remove the “poison” from my arm (Ew.  I’m getting chills right now just remembering the dream) and as I did so it was long, thin, stick-like.  And, the biggest thing I noticed is that as I kept pulling it out, it wouldn’t stop.  It kept coming and coming and coming and coming.  It was one of the weirdest dreams I’ve ever experienced.

Anyone have experience interpreting dreams?


15 Random Facts About Me.

Just today, as I caught up on my blogroll, I read 3 different blogs that had this challenge.  While I am sometimes at a loss for things to write about, I love lists so I thought I would give this a try…and, FYI…some of these facts I’m borrowing from the posts I read earlier because they apply to me, too.  :)

  1. The Brady Bunch was my ultimate favorite TV show as a child.
  2. It bugs me when people tweet themselves.  Do they do that on purpose or what?  What do they think when they get their “own” tweet?  That’s almost as bad as people who comment on their own Facebook status.  Just make an additional tweet or status.  Done.  #ICannot
  3. I have never watched one episode of American Idol and I am very proud of this fact!  (Isn’t it finally going off the air, too?)
  4. I do not like it when people write/say/use ‘Merica.  Our country name is A-MER-ICA.  Really.
  5. I have an unhealthy obsession with purses…I must have them ALL!  (But, I have high expectations and certain requirements for each of them, hehe.)
  6. If I had to choose between books or music as my entertainment, I would choose books and ask nicely if I could listen to 90’s music too.
  7. I need a bucket list.  I want to visit Hawaii and Times Square one day.
  8. I want to learn to Portuguese.
  9. I really love to do genealogy.
  10. Sometimes, I forget I have 2 brain tumors.
  11. I hate the words stump, root, and spine.
  12. I always cry at movies where animals die.  Just don’t make it part of the movie, OK?  Thanks!
  13. My favorite movie/musical is Grease.  I bet I can quote the entire movie.
  14. I guarantee I will never bungee jump.  Period.  End of story.
  15. Currently, I see 7 different doctors (not including physical therapy) to manage Cowden Syndrome and Lhermitte-duclos Disease.  I have a very large medical team for which I am very thankful.

If you want to read a few more of these go here, and here.

Honesty hour

I wish I there was a man in my life who wanted to make Lhermitte-Duclos-Cowden Syndrome better for me.  Who would hug me, be my cheerleader, and give me a pep talk when I need one.

I don’t mean to sound pathetic; I don’t need anyone’s pity.  I’m just being real.  I do all this on my own (with my mom, sometimes) and gets overwhelming most days.  Remember a few weeks ago when I had 6 appointments in 7 days?  Yeah, that’s a lot for anyone to manage; thankfully I have a smart phone now.  :)  All I’m saying is it would be pretty great if I had someone who was with me in this.  Thanks for listening dear readers.


Physical Therapy Day 326. Am I worse, the same, or better?


This is probably my favorite exercise

Just got home from my appointment.  Unfortch the P.T. and I seemed a bit out of sync today, and I’m not too sure why.  It has been several weeks since I’ve seen him, which maybe could have caused it.  Or, maybe it was because I’m constantly thinking of my esophagus and what’s going on there (I was up all night with severe acid reflux pain so I’m not sleeping now).  Or, that I got 2 vaccine shots this morning and have felt a bit wonky.  Maybe I was too sensitive to things, but the bottom line is that I didn’t mean to be.  During one of the exercises the P.T. asked me if I was “faking” my wobbliness(Quotes added by me because I don’t remember 100% how he said it.)  You know, I was crushed when he said that.  I tried to keep it together but all it did was bring up every ounce of fear and self-consciousness deep within me.  I can’t explain much of anything.  Why I’m very wobbly at some times when I’m walking and then other times I seem to walk “fine”.  I think my reaction to him was enough to let him know how much his comment hurt me, and then we were just off for the rest of the session.  Part of me wonders if he really does think I’m faking?

Here are some of the things we worked on today (in no particular order):

  • Monster walks
  • Squats on upside down Bosu ball
  • While standing on one foot throwing a ball into a net thingy (I don’t know the technical words for it…)  I noticed here, as usual, my left side is much weaker than my right side.  I could barely do this exercise properly on my left side (kept wrapping my right foot around my leg, and kept dropping my right foot)
  • Walked down the hall while turning my head left to right.  Ugh.  This one sucked, too.  Tons of dizziness and it made me sick to my stomach.  But, you gotta do what you gotta do.  And, I’m there to work!  Then, walked back down the hall with these magnifying eye glasses on.  More dizziness.  More walking heel to toe…during this time I noticed my wobbliness came and went.  And, here is when P.T. asked me if I was faking.  I’ll let it go, tomorrow will be better.  I’m just wondering where the comment came from, you know?
  • Step-ups on the Bosu ball alternating each leg

Hopefully, the next appointment will be better between the P.T. and I.  It’s funny because I really like him a lot and he pushes me in such a way that makes me want to do more and do better.  I hope to be able to continue this.  The first question he asked me was how I was doing…and I get tired of answering that sometimes.  Mostly, because I don’t want him to think of me as a complainer.  And, I told him that.  Then when he asked if I was feeling worse, the same, or better I really had to think about that one.  I fully get why he asked that, but I really had to stop and think.  Really think.  And, I don’t know how to answer that truthfully.  Am I just being on my own worst critic when it comes to my balance and gait?