Prez of the #TeamNoSleep club

I don’t sleep well at all. And apparently Cowden Syndrome doesn’t either.

Today, I saw the Dermatologist and had a mammogram. FINALLY found out the thyroid/neck MRI was submitted and approved: it’s scheduled for 10/26/18. By the by…can a new lymph node grow when I don’t recall my “other” lymph nodes were even involved in ’03 with the thyroidectomy? Hmm.

Still hard to believe it was 7 years ago this month I was waiting for the genetic testing results to confirm I have a PTEN mutation.

Life is rough. Life comes at you pretty fast. Funny, I’m STILL trying to accept that this is now my life: struggle, fear, terror, anxiety, loneliness, Financial ruin, dizziness, etc.

I know I’d be better off if I just accepted all that crap. But call me stubborn or naive. I can’t accept those things.

I wanted and hoped for so much more in my life.

Hashtag PISSED.


On big heads

I didn’t want to do much ranting or complaining as of late. Because news. Yet, I have this blog and continue to share because I hope I can educate ONE PERSON about Cowden Syndrome who might have never heard of it before me. (Like the technician who did my mammo who’d worked in healthcare 20+ years who’d never heard of a PTEN mutation.)

One of the signs or symptoms of CS is a large head, macrocephaly. (NOTE: I can’t tell you how many times Post-diagnosis I’ve asked my Mom, “No one said I had a big head? No one made mention? Anyone? Nothing?”)

I can connect the dots in my past NOW, of course, never finding a hat that fit right, etc etc. Never thinking it was a sign of THIS!

Moving on: I have to now use a sleep mask. I’m not mad about it, I really actually love it now. However, what I AM kinda made about is this Disney sleep mask doesn’t fit! I’ve tried it a few nights already and my temples/forehead pulse and I can’t sleep. This wasn’t a KID sleep mask! It was marketed/packaged as ADULT, meaning one size should fit ALL.


I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.



I am striving to be more mindful that today is His Day.

At church this morning, the lesson I taught in Relief Society was on the Temple and how to make that a symbol of our membership.  It was a great discussion and I felt the Spirit.  I am very grateful.

I have several posts half-written still in my drafts folder.  About my kidney scan and mammogram appointment, the telephone call I never imagined I would ever make, my thoughts and fears about the Disability Hearing date finally being set (next month!), all added to the 5 year anniversary (July 2011) of my life becoming all this.

Life is crazy.  My life is nuts.  I continue to strive to enjoy my life.  That is such a foreign concept to me now.  Enjoy life?  I know it’s a blessing to me.  Although, it’s been so incredibly difficult and painful these past 5 years, I’m doing all I can to find the balance.

Even today.



No words. Again.

I have thought for the last few weeks about what I can write about.  What I can catch you all up on, because life has moved very quickly as of late.  Mammograms, kidney scans, dizzy episodes interrupting life, etc.

While that’s a great thing, it’s also sometimes difficult for me to manage.

But, regardless, life happens on life’s terms. I continue to learn that.

I just clicked on a blog I follow, and found out the devastating news.  I never met this person, but I was one with her.

I am so sad.  I am so sad for her family.


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.

Because Cowden Syndrome means surgeries, apparently

Is there ever going to be a time in my life where surgery isn’t up for discussion?

I really don’t know what to do.  I have had most of the “main” surgeries associated with Cowden Syndrome (thyroidectomy and hysterectomy).  But, there’s another one:  double mastectomy.

If you were high-risk for breast cancer and were told there’s no “if” but “when” you will get it…what would you do?
What could you do?  The data “says” that I have an 85% lifetime risk to get breast cancer.

Yep; you read that right.

It’s on the table again.  It’s on my mind again; however, was it ever off my mind?

Not really.

I think I have (had?) convinced myself that every 6 months for the next 10 years (ish) of my life I would (could?) worry about my Dairy Queens?  Breathe a labored sigh of relief after every “normal” mammogram, but still hearing “dilated ducts” and wondering what the eff that means?  Alternating between a mammogram and another sort of test (ultrasound, MRI), and don’t forget the clinical breast exam kickers.

I can’t.

I can’t do this.

But, I can’t keep doing this either.

How do I make this monumental life decision alone?  How do I prepare for any and all mental ramifications if/when I decide to do this “next” surgery?


Do you know much about estrogen?  I sure don’t.  I kind of had a crash course last December before/during/after the hysterectomy, but if you asked me to give you the dictionary-definition of it, I’m out.

Anyway.  My oncologist doesn’t want me to be on hormone replacement (I had total hysterectomy last year) because of the breast cancer risk, and since there’s “not enough data” on Cowden Syndrome, it’s hard to know anything about anything when it comes to Cowden Syndrome (not to mention Lhermitte-duclos Disease, but that’s for another post).  So, most doctors on my team support me doing life now COLD TURKEY.  No estrogen, no nothing, just to be safe.  And, for these last months, I was on that train too.  The train to, “No-hormone-replacement-for-Heather-because-we-don’t-want-to-risk-her-getting-breast-cancer-and-let’s-just-see-how-she-does-life Town”

While the hot flashes and insomnia have been paralyzing at times, I started taking Melatonin, Zinc, and Magnesium before bed which has helped me sleep through the nights and not wake up from a hot flash.  The insomnia does get pretty gnarly still at times, but I guess overall I am managing.


These last several months I have exercised (Yoga, Zumba, etc.) the last 2-4 days pretty religiously.  And, while I may have written in the past about my expectations of weight loss/my body changing, I have worked on letting those expectations go (I am a work in progress, daily).  And, I know I am gaining muscle.  I can hold certain Yoga poses now, and just today in class, I didn’t feel like I was going to die.  Die right in the middle of the floor.  I was tired, let’s be clear, but I didn’t think “Today, in this class, I am going to die from exhaustion.”  like I used to. So, that’s good!

But, while some parts of my body are changing for the good, there are other parts that are changing for the BAD.  Bad, bad, bad, bad, baaaaaaddddddddd.  It has kept me up at night.  What is going on? Shouldn’t I be seeing some other changes?  I started using an app to track my food, exercise, and I just haven’t felt right about something.  I don’t know what.  Things should be changing MORE for the good!

Talked to my chiropractor today about estrogen stuff and the concerns I have about my body changing (I’m 42? I have no thyroid or ovaries? I mean, right there, isn’t that 3 strikes against me?)  I’m not giving up.  I’m not complaining specifically.  I’m concerned.  I know that I don’t like the way my body is changing negatively.  So, I need to do some research.  Because, while “we don’t know” the breast cancer risk with HRT, I am monitored very closely on that front (mammograms, breast MRI’s, clinical breast exams).  I can’t believe that HRT would cause breast cancer for me, especially when I have no family history of it.

But, all those things I just typed are WHAT WE DO NOT KNOW.  All the freaking unknowns that Cowden Syndrome shoves in my face on a silver platter.

All the while, laughing maniacally at me as I type this in the midst of the worst hot flash ever.  I am ready to try something different.  If I live to be 95 years old I cannot endure much more of this.  And, for the record, whatever you have heard about hot flashes is A LIE.  A BIG FREAKING FAT HUGE LIE.  Until you have lived and breathed this – you have nooooooooooooooooooooooooooo idea.


PS.  Anyone want to get me one of these for an early Christmas present?  🙂


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.


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.