Sometimes, you just gotta

There are some weeks where I don’t have to deal with, or address, anything Cowden Syndrome related.  What a nice breather!

Then, there are other weeks (months) where I feel bombarded with medical appointments, issues, screenings, tests, hospital visits, and I feel overwhelmed and alone.

Three guesses as to where I am today.

Alas, I don’t have the luxury to sit home and stew.  I have to put on my big-girl underwear and deal.






Dear Readers:  What do you do to get yourself over a slump?  Any suggestions that work for you? As the meme says, I guess I need to “Put on some gansta rap and handle it.”

Cue the gasp

I’m so frustrated right now. 

I am getting plagued again with headaches.

I wake up with one, I go to bed with one. 

And these aren’t mamsy pamsy headaches either. 

These are on par with the post- craniotomy ones I got years ago. Like when I was admitted to the hospital for the 3rd time.

Last night I had to take some Norco, the pain was that bad.

But the pain finally started to subside after a bit and I got ready for bed. I tried to set my intentions for today: I prayed, did some light stretching, put on some vitamin E for my eye wrinkles (LOL) and was looking forward to church this morning. 

Cue the gasp. I woke up with a terrible headache. 

I am emotionally exhausted. 

Is this all I have to look forward to? Life with constant headaches? I demand some relief because I’m way overdue. Period. 

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?


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.

Mas Neuro

I brought my mom to my neurology appointment this morning.  Moral support I guess.  But mainly I wanted another set of ears in the room with me, because, let’s face it.  Brain stuff is hard for me.

I like this doctor a lot.  I met him during the 3rd hospital stay when they were trying to figure out what was causing my horrific headache after the 2nd surgery (hello?!  Is this thing ON?!)  Anyway, when he called me last month he told me I had an “abnormal EEG”, but this morning he seemed to tell me different information.  So, short-term I guess that’s GOOD, but here’s what I gathered from the EEG results:

Just because I didn’t have a seizure during the 30 minutes I was being tested, doesn’t mean I won’t possibly have one sometime in the future.

He said I have “brain irritation”, and yep.  He’s right.  I’m irritated so I’m sure my brain must be, too, haha.  I had to come clean that I wasn’t taking the anti-seizure medication consistently as he asked me to last month; and since we don’t really know what’s going on with my cerebellum, he increased the Topamax even more.  The thing that bugs me is that I haven’t ever known life post-surgery without Topamax or Gabapentin, and eventually (hopefully!) I would love to see how my brain does not on those medicines.  But, as time goes on, I’m thinking that’s off the table.  😦

You know how they say, “Accept the past”, or “Let the past go”, blah blah….well, no one actually says HOW TO DO THAT.  I’m just expected to know how to do this brain tumor stuff and let’s face it, I don’t do it well.  My lack of balance and (I’m now noticing) motor control AND ringing in my ears is starting to really take a toll on me.  Yes. I can walk and talk.  I am so thankful for that.  Very thankful.  But it’s still really hard.  I’m on this road alone and it’s very overwhelming most days.

You know it’s a bad thing when…

the anesthesiologist gets called to do your sedation for the colonoscopy.

I SWORE that this time would be different.  I SWORE that I was going to get the hospital calm, relaxed, and meditative.  WHY WASN’T TODAY different?!  Every procedure/surgery I have had has been laced with drama, tears, incompetent staff, rude doctors, etc.  TODAY WAS SUPPOSED TO BE DIFFERENT!

Two years ago I had an EGD and colonoscopy.  Since I just been diagnosed with Cowden Syndrome the year before, I needed some baseline tests.  I hoped that today would be like last time.  Meaning, since I had 3 polyps last year and some were found via the EGD, and in after talking to both my oncologist and primary doctor, I was under the impression that I would have BOTH procedures this morning.  BOTH.

Now, this post talks a bit about what happened a few weeks ago.  Why did I assume that all would be OK today?  Was I supposed to call the GI Clinic to confirm the EGD when Dr. L and Dr. B both doctors confirmed for me?  No.  I shouldn’t have to do that.  I shouldn’t have to micro-manage all these people in all these clinics to do their freaking job.  It’s hard enough for me to manage what little control I have over my own  life.  It should be crystal clear why I have control issues!  This is MY LIFE.  MY BODY.  I expect these people to do their job.  Period.  And, when it comes at the expense of me, or my wasted time, I DO NOT CARE FOR THIS ONE BIT.

Mom and I get to the clinic:

NURSE 1:  “What are you having done today?”

ME:  “EGD and Colonoscopy.”

NURSE 1:  Looks at paperwork, “Ummmmm…..”


I lost it.  I literally and absolutely came unglued.  All over their place.  (My Blood Pressure was 145/110).  I can’t begin to express how angry I was!  Why wasn’t the EGD scheduled?  “Because they didn’t authorize it.”

WHO THE EFF IS “THEY”?!?!?!?!?

It was the GI Clinic’s fault.  But, oh remember when I talked to both doctors on my team and they said I was to have it?!  I was so pissed off.  I was cussing.  I was making a scene.  I called the oncologist’s office while I was in the bathroom after getting checked in.  THIS ISN’T OK!  My time is important.  My voice is important.  Sure, I don’t have to do the prep for the EGD but that doesn’t matter!  No one is accountable for giving me wrong information!  Every clinic was throwing the OTHER clinic under the bus.  Oncology was blaming GI, and GI was blaming oncology.  I even had names of people to talk to and that still didn’t matter.  THIS IS NOT RIGHT.  I’m still ticked off as I am writing this.

Since I am “having symptoms” and 2 years ago I had polyps, I want to know how things are now with me.  I don’t give a flying EFF that this random GI doctor says “the data doesn’t support needing an EGD.”  Didn’t my oncologist call for one?  No one can answer. NO ONE WAS WILLING TO ANSWER OR HELP ME.

Back to this morning:  My BP hasn’t lowered, and my mom convinced me that I had to do this regardless.  No one at the hospital was going to magically help me (what a freaking surprise) and allow the EGD at the same time as the colonoscopy.  When I got into the bed area, changed, and I was still yelling.  My poor mom was trying so hard to comfort and calm me down, I feel bad I embarrassed her.  But, I think she understands my frustration.  I can’t trust anyone to do their job!  THIS is what gives me anxiety. 

I think today was NURSE 1’s first day on the job (at least when it comes to IV’s.)  When I told her that I may be a hard stick, she said, “Oh no, don’t tell me that.”  And she wasn’t joking.  She was serious.  By the way, no one should have joked with me anyway at this point in my morning.  My head is spinning, and all I am thinking about is, “They better not have to do the IV in my hand.  I cannot take that.”  Another nurse comes in.  My mom is rubbing my shoulder.  I hear NURSE 1 say something else that did not help to bolster my confidence in her.  Then, I feel something wet on my arm.


I really had a panic attack.  Not pretty friends.  I hope you don’t judge me.  I am not strong.  I am very weak when it comes to this stuff.  And, I went right back to the bad place and the brain surgeries and that drama.  Then, I went to the chaos with right before the hysterectomy.  All in about 3.5 seconds.  😦  I think my mom was afraid I was in pain.  I don’t think any of the nurses cared.  In fact, I’m mad about that, too.

Nurse 2 or 3 says that she is calling up an anesthesiologist to do the sedation since I am so upset and that doctor can give more than nurses can.  OK, I’m fine with that.  And, it just so happens I passed this doctor it the hallway on the way to the GI Lab minutes earlier.  I recognized her but she didn’t recognize me.  🙂

GI room.  Doctor.  Assistants.  No one told me when they gave me the sedation.  Then, I woke up.

Needless to say, when I got home I started the calls about the EGD.  That is when all the bus-throwing started.

Oncology Office, “GI Lab said you were to have EGD.  We didn’t know you weren’t having it until you just called us.  We talked to X at the GI clinic.” 

GI Office, “Don’t know what oncology is telling you. Don’t know what system they were looking at.  Dr. G (GI doctor who has never seen me before) said you didn’t need EGD so one wasn’t ordered.  We didn’t tell anyone at oncology anything.”

AND – my primary doctor even looked at this “phantom” system and told me the same thing.

What am I supposed to do?  Do you get what I am dealing with here? The level of my frustration? The amount of incompetency by someone, somewhere?  My hunch is it’s all GI’s fault. They messed up.  They dropped the ball.  All because of this random Dr. G (who hadn’t ever seen me before September, so he knows nothing about me or my history).  AND, he better be glad I don’t remember him or what he looks like, because if I saw him somewhere I would give him a piece of my mind.  I AM THE PATIENT.  I AM THE PERSON LIVING WITH COWDEN SYNDROME.  You may or may not have read about this rare disease in a book, or seen “one of us” in school.  But, if you don’t know me or my medical team, I don’t give a crap about you or your opinion.

1096 Days Ago

I remember vividly what I was thinking and feeling when Mom took this picture.  So much emotion even today looking at this.

I remember vividly what I was thinking and feeling when Mom took this picture. So much emotion even TODAY looking at this.


Fun Fact Friday 6/7/14 (late)

When I was in the hospital during either my 1st or 2nd brain surgery extravaganza, I experienced quite a bit of difficulty with…how can I write this eloquently?

“Going Number 2.”

I was taking so much medication it makes perfect sense, but before I could be discharged I needed to take care of this most important biz.  You get my drift?  🙂

One of my night nurses told me she had the perfect remedy to help me.  It was her Special Secret Drink and she only brought it out on special occasions.  My predicament called for it.  She was ready to help me.  And I was ready to have her help me.

She brought me the best tasting drink!  (Want to know a secret?  At times, I try to recreate this magical elixir at home.  But alas.  I always fall short.)  I think it had cranberry juice, 7-Up, orange juice, pineapple juice, and I think there was another juice in there too.  Of course, I can’t forget the most important ingredient...PRUNE JUICE!

It was so good.  So, very good.  Let me add that after I drank a few glassfuls…all was right with the world. 

I remember asking the nurse the name of the drink –

“Sex On The Hospital”


Me (Photo of the day #2, 4/5/14)


Walking at the park today, I felt strong. I felt like the “Old Heather”, the one before brain tumors and rare diseases. I felt normal. I forgot about hospitals and doctor appointments; brain tumors and Rare Diseases. I walked. I breathed deep. I owned my afternoon. I did it and it was mine.

It was good.

Life is in session

This is a free-write.

Today was supposed to be “ultrasound day” at the hospital.  But, no one bothered to tell me that I needed to be fasting for the abdominal ultrasound.  Scratch that then.  So, I only had my thyroid ultrasound as scheduled.  Thankfully.  This technician was a new one; normally the hospital staff knows me by first name, or at least by “Cowden’s Syndrome”.  I didn’t care for her all that much.  I’m just going to say it here:  IF YOU DO NOT OWN THE EMPATHY GENE IN YOUR BODY THEN GET THE FREAK OUT OF THE HOSPITALSTAT!

She kept saying to me, “I need you to move your head back. Can you move it back more?”

(Well, lady.  I had brain surgery 2 times and part of my skull is missing.  I don’t have the range of motion like I once did.  So, the short answer is NO.)

But, I was willing.  And I tried.  At first she wadded rolled up some hospital gowns and wanted to put that under my shoulders to have my neck be at a specific angle.  I almost spit out my water because I thought she wanted that to go under my headNo freaking way crazy lady!  I am not putting anything like that under my head.  (I’m just thankful I can put my pillow under my head, and even that took a long time coming.)

In the past, thyroid ultrasounds I have experienced have been a bit more involved.  Meaning, the technician is mowing (my word) the wand all over my neck and clicking away on the keypad.  Today was different.  She was almost babying my neck.  Now, in her defense, I had told her about the brain surgeries, but that shouldn’t have made any difference in how she did the thyroid ultrasound.  (Note:  I must continue to have thyroid ultrasounds not so much of the thyroid cancer risk, but to watch the small amount of thyroid tissue that is still remaining in my neck. Since Cowden’s Syndrome is tumor/cell overgrowth – it just needs to be watched.)

I left the hospital and came home to some work “issues”.  I get that we all have work issues.  Life is in session.

No getting around that.  But, as hard as it is for me to admit it – I need some help of the pharmaceutical kind.  I didn’t want to get back on medication.  But, I think I need to.  I am having such difficulty dealing with life on life’s terms.  Because, I don’t like life’s terms right now.  Period.  I miss having money. I miss having independence.  I miss having a life FREE from all this crap.  I don’t have the tools to manage this.  I just don’t.  I admit that.  I feel like a failure.  That I couldn’t do it by myself.  But, I really can’t.  And it all boils down to money.  Money that I don’t have.

Part of the reason I post the “Photo of the Day” and “Fun Fact Friday” is to make sure I have some positive things to focus on here.    Because out there?  I have enough negative to deal with.  Don’t we all though? What makes me any different?  I’m not really.  Of course.  But, I want to be!  I want to have a rich and full-filled life but without money (read:  job) how is that even possible?

So, I come to my blog.  I get on the whiny pot for a while.  And, it feels good to write about it and to own it all.  Own all my fears.  My failures.  My hopes.  My dreams. My frustrations. My anger.  My sadness.  My terror.  All of it.  I own it here because it’s a safe place for me to do that.  But, no sooner than I finish a blog post about what’s affecting me presently, then I need to leave it all here and go about the rest of my day.

The perfect job doesn’t exist.  The perfect health/body doesn’t exist.  The perfect life doesn’t exist.  I get all that.  I don’t like it; but I get it.  What I get to do today is try to come to terms with what’s in front of me.

And, I will.  It make take longer than I expected.  But, I will.