This isn’t a post about awareness or advocacy.  This isn’t a post about getting 8+ hours of sleep.  This post is about processing everything for me.  I don’t have a friend I can call to share my feelings.  Now, I don’t say that for pity, it’s just reality and to be honest, I don’t really trust many people since my surgery.  So, ironically, I choose to vent in this “safe” place, instead.  (That sentence probably wins the Internet.)  :)

It’s almost midnight but I can’t sleep.  While I vaguely alluded to this on my Facebook page a few days ago there’s more.  There’s more within me.  And it’s coming out with a vengeance tonight.  Fear.  Worry.  Doubt.  Of course, if you’ve read my blog lately you know that I struggle quite often with these emotions, and that’s why I love Yoga so much because Yoga gives me a bit of strength to look Fear in the face and say “Eff off.”  (Doesn’t work perfectly, but kinda.)

Friday I was at the mall and I got a phone call from my primary doctor (Dr. B).  She was telling me about the results from the EKG I had a few weeks ago.  Now, I know I had to have had EKG’s in the past before other surgeries, and in fact I knew I had one before the first brain surgery (and come to find out I had one the day after the surgery too) but I do not recall any doctor ever going through the results with me.  Why?  Because there wasn’t much to talk about?  Or because we had bigger fish to fry (i.e. brain surgery)?  I don’t know.  But, over the last few months I have felt a prompting to ask to have my heart checked, at least again.

I’m in the dressing room, sitting down, trying to hear her as other women are YELLING in their cell phones, while I wanted to scream out, “Can you please all SHUT UP?  My doctor is on the phone and I need to hear her!”  Of course, that didn’t happen, but I sure wanted it to.  Dr. B asked if she should call me back, and my gut said, “No.  She called you Friday at 4:50 PM.  You talk to her now.”

Dr. B:  “Blah blah blah blah blah mild M.I.”

Me:  “Uh huh.”

Dr. B:  “Now are you mildly to moderately concerned or are you freaking out?”

Me:  “I’m trying to stay calm and understand what you’re saying but I’m moderately concerned.”

Of course, Dr. B never says “Blah” to me (although maybe she does in her head when she’s listening to me?) but all I could understand was “Mild M.I.”  The other words she said just made absolute 0 sense to me.  Even when I asked a few questions I still didn’t get it.  But, I asked her if this was because of my weight?  She knows I have been busting my tail working out and the weight is not budging (for another post, I’ll get there).  She said that if my heart was stressed, these results would be different.  Then, I asked her if I needed to stop working out…(am I going to have a heart attack and keel over in Zumba?)  She said that the cardiovascular exercise will only make my heart muscle stronger and make it work more efficiently.


You know on a heart monitor the pointed line that goes up and down and beeps?  Mine doesn’t go as high as it should, or as high as expected.  My cholesterol is good.  My HDL is good (I think it was 54 or 57).  I don’t think any of this is related to brain tumors or rare, genetic conditions.  But, I am not a doctor.  She is going to order another test this week.

What does this all mean?  Does it mean the life I thought I deserved is out the window?  Does it mean I haven’t relied nearly enough on the Lord to calm my soul (I almost typed “heart” but that would have been too funny).  I state many times I have this blog to write all this garbage down. All the fear. All the unknowns.  All the woes with my financial struggles, burdens, direction of my life, wishing my life were different, all of that.  And, then I leave it here and go take care of myself to sleep well.  Listen to nice music.  And just do the best with what I can tomorrow.  I don’t blame God.  While I’m confused and very fearful, and wonder WHEN “This Too Shall Pass”, it’s becoming painfully clear to me that….

“This” may not pass.


Friday Facebook

I do my best to put all medically related posts on here. But sometimes, I happen to be on Facebook and it’s just easier to write a quick update there instead.  Like tonight.

If you are on Facebook and would like to “LIKE” my page for updates (which come from the blog directly or short ones from myself) – click here.


What is busy?

I’ve said this before.  Cowden Syndrome (and for me, Lhermitte-duclos Disease) keeps you very busy.  Busy with medical appointments with your entire team of doctors, constant screenings to make sure that if you do get cancer, it’s caught very, very, early.  I get it.  I don’t like it.  But, I get it.  (And I know I used too many commas in that sentence, but I’m over it.) 

I need to be thankful.  Dr. L said last week, “Looks like most everyone has their hands in you.”  That may sound super gross (baha), she said that in response to my colonoscopy consult in a few weeks; my brain MRI that is in the process of getting approved/scheduled; I just saw my primary doctor last week; she and I reviewed my mammo results…and that’s only August!  (Whew!)

While I get super frustrated that my life is no longer what it was July 17, 2011, (read:  What I WANTED it to be) I am truly grateful that I have medical coverage and there are many doctors who are watching me.  My anxiety kicks in all too often because I know that all my doctors have other patients on their case load, and (most likely) I am the only person with a rare disease, and let’s be honest.  Rare Disease stuff isn’t the norm.  Cowden Syndrome isn’t a cough, and Lhermitte-duclos Disease isn’t a broken leg.  These 2 syndromes have their own agenda most days.  And, there’s not enough data for anyone to look back on and say, “Oh.  Let’s see Heather.  Gangliocytomas grow about 1/2 mm. every 3 years.”  There’s none of that.  So.  Life moves on.

Anyway.  Last week I saw Dr. L (the oncologist) to follow up on the mammogram from a few weeks ago.  I always breathe a sigh of relief when I do not receive a phone call from her in between my mammo and her appointment. Thankfully, this go-around didn’t disappoint.  She and I have a nice routine in play.  While I alternate every 6 months between breast MRI/mammogram (to manage my breast cancer lifetime risk of 85%), I see her the other 6 months for an office visit and clinical breast exam (so, basically I’m getting my Dairy Queens checked somewhere/somehow every 3 months or so.)  This routine does help lessen my anxiety quite a bit. And, to be honest, I go back and forth between recalling that I have no family history of breast cancer (!).  Shouldn’t this account for something? Anything? With my PTEN gene?  Or any of my freaking genes?

I don’t know.  I don’t know anything. What I do know is that our lives are filled with busy.  Busy-here.  Busy-there.  It just so happens that I have two more layers of busy on mine with life with Lhermitte-duclos Disease and Cowden Syndrome.  I do have a smart phone.  I am learning to rely on it more.  I’m learning the Cloud more, errrr, kinda.  I don’t get it still, but I’m trying.  I’m trying to get help where I can.  Whereas, this Rare Disease road I must walk on alone, I’m thankful there are those of you who choose to walk with me. I cannot force anyone to walk with me, I learned that the hard way a few years ago.  So, I am more thankful for those of you who willingly come with me. Those who want to learn.  Those who ask.  Those who are scared of brain tumors and rare, genetic conditions, but who connect with me nonetheless.

I know I am NOT Lhermitte-duclos Disease and Cowden Syndrome, those are just 2 things my body has.  But trying to find my place in the world, adapting to these huge life changes, has been really bumpy.  Bumps suck.  I’ve also learned that you go over bumps.  And then the road is smooth again, if even for a short time.


There’s still time!


There’s still time to order your custom shirt that will help me (this is a crowdsourcing event) AND will bring awareness for Lhermitte-duclos Disease and Cowden Syndrome. Click here to reserve your shirt!

Thank you!

Also, I have decided that I am going to donate a portion of the money raised from this campaign to Global Genes.

Fun Fact Friday 8/29/14

Have you heard of WEN?  Or Chaz Dean?  I may have written about him before; I am a huge fan of his products.  There is something about them that really makes my hair different (no joke).  Really really.

Even Mom has gotten on the bandwagon, albeit slowly.  (Mainly because I talk about Chaz, or because I have QVC on all the time, she’s bound to pick up on my messages!)

Last week I asked Mom, “What’s that smell?” (she was in the bathroom getting ready) -

Mom:  “Oh, it’s three sixty-nine.”

Me:  “WHAT?!”

(She meant Chaz Dean’s SIXTHIRTEEN.)  I tweeted this exchange to Chaz and he retweeted it!  Too funny!  :)

“If you stay too much in the past it’s going to keep you there”

Have you heard of the show Married at First Sight?  Now, I don’t want to debate anything on this show, really.  It’s just a reality show like all the others (to me).  But, I do admit to watching it and last night one of the “experts” said this quote and it really resonated with me.  Here’s why:

I know I am stuck on the brain surgeries. I know they paralyze me with fear daily.  I know that I must use every ounce of strength I have to overcome the terror from those 2 experiences and move on.  I know this.  I know it’s my past.  I know it was 3 years ago.  I know that today I am not having brain surgery (and I better not have to have another one, but that’s besides the point!).  I know all this.  My rational mind tells me this every single day.  “It’s done.  Move on.  Get going.”  But I am here to tell you it’s not easy, folks.  Sure, there are good days, and even better days.  (Yoga makes some days better!)  And in fact, there are some days, that turn into weeks, where I don’t think of laying on the operating bed being wheeled into the operating room.  That I don’t think of exactly what I was feeling minutes before that.  Saying, “I love you” to my Mom wondering if I was ever going to see her again.    This is all my past.  I get that.  But the problem is that I am living with 2 brain tumors and the unknown of having another brain surgery(s).  I know that’s the part of life we all must deal with – the unknowns.  I didn’t know I was going to get 2 brain tumors, until I did.  And, I don’t know I’m going to get breast or colon cancer, until I might.  Or will.  Or who knows.  This is a weird road to be on.  This is a weird thing to have to wrestle with every single day.  This is my cross to bear, just like we all have our crosses.  These are mine.  I get that.  I’m not downplaying anyone else’s.

So, to the point of the quote:  If I stay too much “in” the brain surgeries, it’s going to keep me there.  How true is this!  It was magic to my ears, really.  But, no amount of Yoga, or substitute teaching, or shopping, or anything will magically “snap” me into the present.  If there were, I would have snapped that band years ago.  I’m sure if I wasn’t struggling so much financially it wouldn’t be so difficult to leave the past in the past. If I felt some semblance of my life “before surgeries” I probably would feel more confident in the direction my life is presently.  (Isn’t it funny how much stock we put into money? Or employment?  And when those are “taken” from us how much it rocks all we thought we were?) – in fact, maybe that’s the root of things.  That since I’m no longer working (I do substitute teach but I don’t really call that gainful employment) THAT is where I am stuck.  Or WHY I am stuck.  I don’t feel confident in my abilities as an employee, and to be honest, I don’t feel confident in my abilities (that’s not the right word but just work with me here) as a woman.  But every day I try to do this. I try to leave the past in the past and get IN my present and future.  And yet every day feels like a failure.  Utter failure.

Cowden Syndrome robbed me of that ability.  That choice. That right.  Yes, I believe it is a right of every woman to be a mother.  Not that every woman treasures that right, but that’s another post, too.  That beautiful opportunity to be a mother.  And these dang brain tumors robbed my confidence.  I don’t know what the answer is.  I don’t know the magic elixir to “get on with it”.  Because if I knew what it was, I would have drank it years ago.  I guess I am tired of things being hard.  I am tired of being scared.  I am tired of feeling weak.I don’t know how to tie this post up into a nice little bow and say, “Well, here it is.  Here is how you leave the past in the past and just deal.” 


This is my life.  It’s real.

Guess I need more of that hope today.

Control. Thou hast none.

This week I have worked on a blog post about control, or lack thereof.  I never considered myself to be a controlling person; not by a long shot.  But Lhermitte-duclos Disease and Cowden Syndrome teach me that I CONTROL NOTHING.

I have quite a bit to say about this and all week I was planning on writing this morning.

Then, I woke up with another vertigo episode.  Very severe.  Is my cerebellum getting angry?  Tired?  Irritated?  Is there something going on with the brain tumors?  My gut says, “Oh no.  They haven’t grown in 3 years, so I’m in the clear.” 

However, another part of me says, “You haven’t had vertigo (like this, or ever) since the brain surgeries.  This would be right on track.”

My neurologist is out of the country.  But, the MRI he called for a few weeks ago is in process of getting approved/scheduled.  So then there’s that.

PS, please check out my advocacy campaign and consider buying a shirt if you can.  Thanks!

No Fun Fact Friday

I haven’t felt very “fun” lately, so I am tossing FFF today.

Maybe it’s because I have the mammogram next week and that “85% lifetime risk of breast cancer” just never goes to bed?  Or that I have an early brain MRI to check the brain tumors?  Who knows.  Regardless, something is off.

Here’s a quote from my Instagram account this week:

Yoga is amazing. It just is. Period. I’m so thankful I found a place that I can work on strengthening my balance because these effing brain tumors aren’t going to get me down! At least not without A FIGHT!  Last week I had gnarly vertigo and I’m struggling with my balance & dizziness. Have the tumors grown? Who knows. Is my cerebellum giving up the ghost? Dunno that either. I AM TIRED, so I can only imagine how tired my cerebellum is. So. What do I do? I keep fighting tooth and nail on this freaking balance stuff. Because WHEN the time comes – I hope I have established enough of a reserve to pull from.

Something kinda funny happened today while I was out running errands.  I got a phone call from a number that I recognized to be from the hospital, which I assumed to be confirming the mammogram on Monday.  After I answered the girl told me she was calling to let me know the technician was going to be on vacation next week and “did I want to reschedule my appointment?”  I was a bit confused because, although it’s a good thing that the radiology staff knows me by name, it was odd they were calling me to tell me she was going on vacation.  After I pressed her for a bit more information she remembered that I either “only liked” certain hospital staff or “didn’t like” certain hospital staff.  (Note: I know EXACTLY who I DO NOT like in the radiology department.  Too many pelvic ultrasounds gone wrong from a raunchy technician – you make sure you leave the room, after you dry your tears, with your head up, OUT FOR BLOOD.)  The girl I refuse to have ever perform another procedure on me THANKFULLY is not the mammogram technician.  Whew.

I was touched that the front desk staff had my back.  Really made me feel good.

Power Outages and Blogs

I have been up for the last hour because for some reason, when the electricity in the house kicked off it woke me up.  UGH.  In the last 10 minutes I have read 2 blogs posts that have moved me.  I wish I could have written these myself.  However, since I didn’t I would like to take a moment to share them with you. One is from a contact of mine living with a brain tumor.  What she writes comes from her soul, and mine, too.

The other is from a contact who is an advocate for her genetic syndrome.  I wish I could have written it, but titled it “10 Things Cowden Syndrome Has Taught Me”.    :)

Please take a moment to read their words.  It will give you a small glimpse of my feelings of Lhermitte-duclos Disease and Cowden Syndrome.

Fat Ass.

10 Things Lynch Syndrome Has Taught Me

PS:  I tagged this post with “hope” because both of my virtual friends give me hope to keep fighting with my head held high.