Dear Cowden Syndrome

I would like to share this post with you from my virtual contact: Beating Cowdens.

I couldn’t have said it any better myself!

THE week

Some  weeks are Cowden Syndrome and Lhermitte-duclos-free.  Other weeks I am slammed with several appointments all in a row and I’m reminded that my life is different and this is my new normal.  I think it is a tad easier to accept these things that I do not like.  Maybe I’m getting tired?  Or stronger?  Or maybe it’s that I have realized that in this “new normal” there are other things I can focus my energy on?  (Volunteering at the animal shelter?)

I haven’t yet written about what happened at the breast MRI appointment; I’m embarrassed to say the least.  Suffice to say I didn’t get the scan as I needed to.  So, my poor oncologist has been forced to find another option for me to check my Dairy Queens in the meantime, so that we “don’t miss anything”.  (Quotes added but inferred by both she and I.)  Tomorrow I have a mammogram and then if need be, followed immediately by a breast ultrasound.  Let’s hope, as always, for NO WHAMMIES and big money…I have had the ultrasound before and it’s not. fun.  But, we’ll see.  We will see.  Whatever it is it is.  I’m not nonchalant about breast cancer or the possibility of it, but I just realize that I have to do all these things.  I have to go to the doctor, go to the hospital. go here and go there because “they” want to make sure I am being watched closely.  THAT, I get.  And, I’m thankful for.  Doesn’t make it any easier, it just is what it is.  Does this sound like growth?  HA!

Friday I have a brain scan and then the appointment with the oncologist.  I have noticed that I don’t seem to be as dizzy lately, which is interesting because we had to decrease the Topamax because of the side effects I was experiencing.  But I have noticed something that is concerning, but nothing I can do about this either:  I don’t really struggle when I am talking to someone, maybe every once in a while maybe I will switch a word or two but nothing too big.  Getting the information out of my brain in one direction is OK.  But what HAS been a problem as of late is when I have to do that in several steps.  Meaning:  When I am subbing or teaching or reading something…getting and processing information from Point A, then to my brain, then OUT of my mouth in coherent words is hard.  Frustrating, difficult, confusing, not easy.  And, plain ‘ole not fun.  I noticed this last month when I was at church.  I powered through, because there is no other option, but man it was harder than I wanted it to be!

Isn’t that how most of feel at times about life?  That it is harder than we want it to be?  Sure, I don’t want brain tumors and high breast cancer risks.  I would rather be carrying my Fossil bag at Disney World enjoying the park! :)  But, I’m not.  I’m navigating slowly this rare disease life.  It’s much harder than I want it to be, but if I wasn’t on this road, I would not have met the people that I have.  I wouldn’t have this blog, either.  I realized that’s kind of a big deal, too.

Not Lhermitte-duclos Disease and Cowden Syndrome (kinda)

I have racked my brain for the last few weeks about something to write about that’s non-medical.  But, let’s face it.  Pretty much my whole life revolves around medical everything or how medical somethings have fundamentally changed my life for the much, much, worse.  But, since I am a list maker, list writer, list-follower (?) I thought it’d be a good object lesson for me to write some things going on that aren’t really brain tumor related.  So, here goes:

  • Saw a nutritionist last week.  She said no more protein shakes after my workouts, and instead to drink 2% chocolate milk.  I’m all for trying something new!
  • This is my birthday week!  Celebrated by getting a fancy manicure and DID. NOT. BUY. the Fossil bag I have drooled over for months (in Mushroom, BTW).  That, there, is growth!
  • Last night I spoke at a treatment center in a Twelfth Step panel.  Quite the experience!  :)
  • Just before I began this post, I was at the animal shelter in the Cat Rooms.  I noticed that one cat in particular, Rita, didn’t look right.  Her hair seemed wet, and I guess she could have gotten in fight with another one and they could have fallen into a water dish.  But, what’s more likely is that she is ill because I heard that there is a something going around there.  I told the front office staff and I pray they look into it.
  • Been doing quite a bit of genealogy work on my mom’s family line.  I hope to never hear, “Oh, all my work has been done!” because it’s never done!  I love it so much.  I know these ancestors of mine are real people and they just wanted to be found and validated as once living souls on this earth.
  • I am thinking about doing another Booster fundraiser t-shirt.  (Especially since I shrunk mine in the dryer this morning.  #FacePalm.)  Would you be interesting in buying one?  More info. on this soon.
  • My new favorite reality TV shows:  Number 1 and Number 2.  Color me hooked; only for a few reasons.  #1 – because the single, girl in me hopes for love one day, no matter what the way. And #2 – because Days of Our Lives.
  • I have a trip planned in July and I am SO. EXCITED.  Here’s a clue:


Because Lhermitte-duclos Disease and Cowden Syndrome


Oh, how I loved these shoes!  But, they have finally been retired.

IMG_8463Here are a few pictures from my Rare Disease Day event last month.  Thank you to everyone who supported me in this endeavor!  On to February 29, 2016!

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My brokenness

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The EGD that wasn’t supposed to be

Every time I go to the hospital I swear it’s going to be different.  (But before I start my story, what is it about the hospital staff SHOUTING MY PERSONAL INFORMATION OUT FOR ALL THE WORLD TO HEAR?!  “ARE YOU STILL AT XX?”  WHAT IS THAT ABOUT ANYWAY?) I thought hoped prayed yesterday would be different and that at least I would have good veins.  Good, healthy, freaking, FAT veins in my arms that a needle would slide right into.


But, alas.  No.  Nope.  Didn’t happen.  Even with all my meditative mantras of, “Good veins.  Good, healthy veins.  Good veins”.  While my veins didn’t cooperate yesterday and I did have to have the IV in my hand (UGH!) I had 2 great nurses that were amazing.  That’s pretty rare.  I was very thankful and very lucky.

I was pretty drunk when I got to the hospital so that helped with my anxiety.  Luckily mom was there too and she could help with the weird questions, “Did I have any loose teeth?” and after I finally got settled with the IV the nurses wheeled me into the procedure room (is it called an Operating Room?  I actually don’t know!)  But I stayed in there forrrrrrrrrrrrever.  I don’t know if time just stood still, or the doctor was late, or what.  But, he finally came in but I hardly recognized him.  (Thanks Ativan!)  He asked me some questions but I don’t really remember them.  I told him that I stopped eating bananas and the horrific GERD decreased about 95%.  He thought it was the Ativan talking but I swear.  If you have acid reflux, stop eating bananas and see if that helps you.

The other technician put a plastic thing in my mouth and strapped it behind my head, and I remember the strap hurting my scar so they adjusted it.   I remember one of the other nurses showing me a picture on her phone of an operating room with Jesus Christ looking over the shoulder of the surgeon.  That was really nice to see and a nice visual before I went to sleep.

The next thing I remember I’m in the post-op room and my mom and I are waiting for the doctor.  I must still have been pretty drunk, because when he came in and said, “Biopsy”…I couldn’t wrap my head around that.  I mean, it’s not that big of a deal compared to brain surgeries, but when I saw the paperwork that said, “Multiple polyps”, and he asked my mom who I follow up with (oncologist), I kept pushing him on “HOW MANY POLYPS WERE THERE?”  He wouldn’t give me an answer.  Oh, balls.  Because when I had the colonoscopy and EGD 2 years ago I had 3 total polyps.  This was kinda a whole new ball game.  AND, if you were wondering, I’m not here for esophageal ANYTHING.  So, let’s just get that clear right now.

As I have told my mom all day today (and the end of yesterday), my throat hurts like, “A mother effer”.  Luden’s cough drops don’t do a darn thing for this sore throat.  I’m not thinking the worst.  I’m not thinking about all the cancers not yet documented for Cowden Syndrome.  I’m not thinking about tumor suppressor genes and what havoc they can wreak on bodies.  I’m actually thinking about how when I went to Chick-Fil-A for lunch today I didn’t get fries and I haven’t had chocolate at all today.

I’m here for THAT!

PS, Remember that one time when this happened?