I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.


I know I have been MIA; I have quite a bit of catch up to do!

I saw this quote on Instagram this week and wanted to share it.  It has been on my mind and sums up how I have felt lately:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts – before this, and after this.”

I don’t know who said this, but I really like it and it speaks volumes to me about the brain surgeries.  My life will never be the same again and I can definitively see it divided into two parts: before July 27, 2011 and after.  Lately, I find myself having more difficulty communicating (processing) at work.  I feel like I stick out like a sore thumb and that people look at me like I have 3 heads or something when I speak.  I feel foolish and that people humor me to my face.  I feel that my co-workers laugh at me behind my back and wonder what I am doing there.  I fear I will make a mistake.  I fear that my co-workers won’t and don’t understand me.  I fear that I sound like a fool when I speak (and don’t make sense) and jumble my words to try to communicate.  Things don’t seem to be going right in my brain.  Things are getting harder and I am scared.  Having a conversation with someone feels OK; it’s when I have to follow a list, lesson plans, verbal instructions, etc. is where I find myself having problems.

I do not like it and I do not know how to tell if this is really happening, or all in my head.  I do not want pity; I just don’t want to look stupid.  I would rather stay home and not do anything.  Where does that leave me trying to earn income to support myself?  If I cannot be a properly functioning employee?  What am I supposed to do?  And I am not yet approved for Disability so this adds heaps and heaps of anxiety to my dire financial situation.  Will this ease up anytime soon?

Beyond BRCA

Have you heard of the BRCA gene?  Have you heard of the medical decisions Angelina Jolie made a few years ago?  If you’re on Twitter, I can tell you there is quite a lot of discussion about BRCA and hereditary breast cancer.  However, there isn’t much about PTEN mutations, and I want to change that.  Granted, PTEN is rare and doesn’t occur as often, but it’s just as serious.  I carry a “faulty” PTEN gene, which also increases my risk for breast cancer, not to mention many others.

I am very excited to share this from My Gene Counsel and I hope you will take a look at this link.

A bit more P.T.

Just came home from another P.T. visit. I am really lucky I got a few more visits approved.  This Therapist is outstanding, and I know I have mentioned that in earlier posts.  He is incredible at his job, and knows how to challenge my limits and get me right on the verge of tears.  Good tears, I guess, but I wonder is there really such a thing?  :)

I have mentioned this before also, these brain tumors have robbed me of my confidence.  Confidence in my abilities to do what I once did.  Walking, especially, because of the damage to my cerebellum.  So, P.T. knows to go right to the heart of the matter and PUSH. ME.  I mentioned this morning that one of my concerns, fears, problems, complaints now with my balance is that I don’t feel sure-footed when I walk.  I feel like I am going to fall, especially when I am carrying something, or when I cannot see my feet.  It’s just reality now.  I cope, sure.  And, there is a lot of adapting.  But, I am in physical therapy to get stronger and learn some other skills, right?  So, guess what he made me do?


He put these foam rubber things in a straight line, gave me a box to carry, and had me walk across it.  Without looking down to see where my feet were.  I swear, folks.  It was one of the hardest things I have done in a long, long, time.  It sounds cheesy, sure.  But, try to imagine it.  I choked back quite a few tears.  I cannot put into words how difficult it was to walk across that, or how it made me feel when it was over.  Almost every single fear I have he magnified in this exercise, but for a greater purpose and I get that.  I get that it was pushing me through the fear.  Lots of fear.  I know I wasn’t 10 feet off the ground (and that I was always safe), but the fear of falling was still great.  I walked back and forth a few times, then thankfully we moved onto another exercise.  My mind was mush after that!  Couldn’t I have just done some sudoku instead?  LOL

When I got to the treadmill, he had another tricky thing in store for me!  I walked a mile on the treadmill, without holding onto the sides (so effing hard!) and he placed a sheet over the top of the machine so I couldn’t see my feet.  It almost made me sick to my stomach that I couldn’t see my feet.  I never realized how much I need to see my feet to get my bearingsWhen he took that visual cue away, it was painful.  I was literally sweating everywhere.  Kind of gross, actually.  I am mentally exhausted and I want to take a nap.  I probably need to push through this but I think I am going to listen to my body this time.  Sleep, I am coming for you in a bit!

A season

It sure would be nice if this brain tumor and rare disease stuff could be only for a season in my life.  But, I know that isn’t the case and the sooner that sinks in, the better off I will be.  Time.  URG.  It’s always time, isn’t it?

I spent most of today sleeping.  That concerns me greatly because I’m not sure if it is because I am depressed or because of brain fatigue.  I go and go a lot during the week (especially when I am able to work), so when the weekend rolls around I usually need to decompress and recharge my batteries.  I don’t know how to tell the difference or if I need to be concerned.

Such is this life of mine now.


Gosh, I have had such writer’s block these last few weeks.  I have so much on my mind, including a lot of anxiety about my brain.  I am noticing some more changes with my gait, memory, and processing.  But I have sat down at this computer many times and just cannot formulate anything.  I am so worried about being strong, being positive, but what’s odd is usually I don’t worry about that here.  I use this blog as a place to vent about everything that is on my shoulders.  But, for some reason it’s not flowing.  Why is that?  I know that if I don’t get these worries out, they will continue to eat me up inside.  If I could, I would ignore all these feelings away.  But, it doesn’t work that way.  Life with two brain tumors and a rare cancer syndrome takes a lot out of me.

Some days, I feel like a phony.  That if people knew the real me – all of my worries, doubts, fears, anxieties, limitations, they would laugh me out of the building.  I think I put on a good front most days.  But, I fear the day when the wall comes down and people see the real me – when someone sees that I cannot do what I once did.  I don’t want anyone to think less of me.

Reality bites.