Cowden Syndrome never sleeps. Kinda like me!

Today was my oncology appointment. Gah.

I had a few months of “quiet” but that’s now over. The breast MRI, colonoscopy, and EGD are next up to bat.

I’ve come this far, but man I’ll tell ya…it’s so much. I’ve always battled generalized anxiety, but when things come at me fast like this, my anxiety is running full speed at 150%.

Praying for sleep tonight.


Connect the dots

Sometimes, it’s fun to look back at from where I came.  My real medical life began in 2003 when I got diagnosed with thyroid cancer.  I hadn’t really been all that sick prior to that.  Little things here and there, had my tonsils removed when I was 19, that’s about it.

Obviously I can connect the dots now and see how most everything from birth-2003 and then 2003-2011 screamed Cowden Syndrome, but whatev.  Did you know that thyroid cancer is one of the “signs” (my words) of Cowden Syndrome?!

I saw the endocrinologist this week.  With all the ones I’ve been through, not including one specific one who was my doctor for EIGHT YEARS, this current one is pretty good.  I’ve had better (see previous sentence) and I have seen much worse.

People can’t seem to leave my TSH alone.  It’s either too high; too low; too whatever and we have to worry about blah blah blah.  I just KNOW how I feel when my TSH is a certain number.  Can’t you all leave me alone?  (NOTE:  Mild sarcasm.  I get it.)

I saw Dr. Endo this week.  He loves my TSH at 1. something.  I hate it.

I love my TSH around .10 or .20.  But, he doesn’t.

Anyway, more blood work.  Checking of my T3 or T4 or something.  I don’t know.  Then, I see Dr. Oncologist in the next weeks to check The Ladies.  










What’s new with you?  🙂

Face the music

Sometimes, I don’t care for Cowden Syndrome.  I don’t care to face all the organ stuff that comes with it, you know?  Well, actually…I never care for Cowden Syndrome, except that it’s connected with me some amazing warriors who know what this life is like.  Sometimes, I just want to stay in the bed with the covers over my head and wish for unicorns and rainbows.

So this morning…that’s what I did.  Missed church and everything (awful – I know).  But, my body and mind were calling for it.  I don’t want to go to the surgical oncologist tomorrow and hear the words, “Esophagus, cancer, resection, polyps”, etc.

I don’t know how to end this post tonight; I’m scared of what my future holds with Cowden Syndrome and I’m scared about tomorrow.  I try to be positive most days, but tonight I’m on my pity pot and that’s where I’ll be ’till tomorrow, if you need me.

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.

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.

Organize thyself

Dear Yetta Francine**:

How are you?  I am sorry it’s taken me so long to write.  I’m not sure what’s going on; as you know, normally I love to write as this is such an outlet.  Nonetheless, I have been blocked in writing.  I know I need to catch you up on so many things, so I am going to do my best here.  Thanks for being patient.  And, above all, thank you for being here for me.  It means more to me that you’ll ever know.

Instagram:  You’ll never guess what happened?  You know how I love Instagram and post pictures about my life with Cowden Syndrome and Lhermitte-duclos Disease? A few months ago someone commented on one of my doctor pictures and she said she has CS too.  After some commenting back and forth, come to find out SHE LIVES 5 TOWNS AWAY FROM ME!  Can you believe that?  If anyone had told me 3 years ago that I would be connecting with ANYONE who has Cowden Syndrome, let alone someone so close, I would have laughed in their face. However, in hindsight, I sure would have appreciated that information back then because it might have done wonders to help ease my anxiety and despair then.  (Granted, the despair has lifted, thankfully.)

Next medical thing:  I am having my next colonoscopy on the 24th.  Did I ever share this with you from a few years ago?  I am glad I wrote that because I will need to check it again before next week.  I can’t believe it’s next week!  I remember the discussion in 2012 about when to have the next one.  That’s the thing about having such a large medical team.  One doctor suggests “X”, while another suggests “Y, Z, and then a.”  Positives and negatives on both.  Anyway, it ended up being 2 years that I needed another one, because while I wasn’t diagnosed with cancer then, I did have 3 polyps, which no one ever wants.  When I saw the GI doctor last month, he didn’t think I needed to have an EGD this time.  That was news to me, as I was expecting to have both procedures just like last time. I told him that I had a polyp in my esophagus (or somewhere, that came up via the EGD) and for my peace of mind I want to know if there are any more this time.  We went round and round, he said he had seen a person with Cowden Syndrome during his residency, blah blah blah, but I didn’t need an EGD.  WHY THE CRAP NOT?!  I started to get angry here.  My voice has value and meaning. When someone doesn’t listen to me, especially when it comes to MY health and MY body, I really get mad.  He wasn’t going to budge so I told him that I would check with Dr. L (oncologist who schedules all my screenings and scans, except for my brain).  I called Dr. L’s office and left a message with one of the assistants and waited for a call back.

Well, that call never came.  Of course.  So, last Monday I called the oncology office.  Spoke with D (I won’t throw her under the bus here) and said why I was calling. Gave her all my info, and was under the impression she would leave a message for the assistant and all was on track.  Right before our call was finished she put me on hold for about 10 seconds, then came back and said, “Oh.  For your this issue you need to talk to your Primary.”

ME:  “Why?”

D:  “Well Dr. L handles your cancer treatments so you need to contact your Primary.”

ME:  “I don’t have cancer.  Dr. L handles all my screenings.  I have a rare disease and Dr. L is very aware of this.”

D:  “Well, I talked to the head nurse and that is what she said.”


D:  “Because you need to talk to your Primary.”

AND SHE REFUSED TO LET ME LEAVE A MESSAGE FOR MY DOCTOR.  The doctor I have seen since 2011.  The oncologist.  I wasn’t able to leave a message for her.  I about lost my marbles.

I called a contact of mine at my Primary’s office and unloaded on her.  I cried and just about lost my noodle.  My friend A is so amazing, so kind, so wonderful (if you read this A – I so appreciate you!) and she said she’d pass the message to my Primary and maybe she and Dr. L would talk (again) and I decided I just need to let this go.  For now.

Tuesday morning my Primary doctor called, she looked in this system and told me that I was scheduled for the EGD.


My Primary didn’t do anything, she didn’t make any calls, she just read to me what was already in the system.  Urg.  You have GOT to be kidding me.  I know Yetta.  I know this is a big mess and I should have just let it go.  But I couldn’t.  I didn’t.  D and the “Head Nurse” (what a joke) MUST be held accountable for what they did.  Or, at least have me THINK they are being held accountable.  I called the supervisor at the office, and I swear, she sounded about 14 years old.  I told her everything, and she said she’d “Get back to me.”  She did the next day, and said that D was “so sorry that happened and next time I would be allowed to leave a message for the doctor.”  I said, “Well yeah.  I should always have been able to do that.”  And then we went round and round about the “Head Nurse”, C.  She lied to the supervisor, I know flat out she did.  And I told her that.  She wasn’t going to budge either about “procedures or protocol” and she’d have the nurse call me directly to talk about that.  DO YOU KNOW I AM STILL WAITING FOR THAT CALL?!  Then, here’s the kicker: A couple of days later I get a call from a different nurse, the triage nurse. She says she is calling to me to make sure I knew about the EGD and Dr. L wanted to make sure I knew.


I’m done.  I wish that I could be done with that office, but I cannot.  It is what it is. But this triage nurse was very helpful and I am just going to call her in the future for everything.  So, I am a bit nervous about the procedure.  After all that.  I won’t lie.  And, I suppose that the nervousness (I am only calling it that) won’t ever subside.  It’s just part of my life.

You know Yetta, we are all busy. I am sure you are busy too.  We all have lives.  But, part of why I feel so overwhelmed is that if I drop the ball on something, it’s only me that will be affected and what if it turns to something medically serious?  Does that make sense?  So much responsibility and so much weight on my shoulders, that it’s suffocating.  The physical pain is getting worse too.  Not from the stress, I don’t think, but from the brain tumors affecting my balance.  Have I ever told you about the Spoon Theory?  Please give it a read when you have some time.  It is pretty great and pretty right on.

Juicing:  A friend gave me a juicer a few weeks ago.  I am so thankful and so excited!  I’m sure you have heard of the Gerson Therapy, or Fat, Sick and Nearly Dead.  A different friend juiced for 40 days and lost 23 pounds!  My goal is to juice 1 meal a day, or at least breakfast when I am home.  Every time I do that I put a sticker on my calendar.  🙂  If you check my Instagram account you’ll see some pictures of my recent drinks.  My favorite juice is with apple, carrot, and celery.  Once I get going on juicing at least one meal daily, then I will probably start to 2 meals, and so on.  My favorite mantra is “Celery All The Things!”  🙂

There’s quite a bit more I want to catch you up on.  I haven’t acclimated very well to “living in the world with Cowden Syndrome and Lhermitte-duclos Disease”, and to the title of this letter (post) I need to make some big organization changes in my personal life.  I’m not sure how to do that so if you have any suggestions, please send them my way.  There’s some more I want to update you on, about my expectations (how I am working on letting those go) and about a comment that someone told me (about 7 years ago) that has triggered some stuff lately.  Also, do you know of a way to manage chronic physical pain?  Anyway, I’ll get to it soon, I promise. It all ties in to chronic diseases and managing them in life.  I suck at it, apparently.

I hope you are doing well.  Please write soon.

Love, Heather




**Yetta Franice was my Cabbage Patch Doll’s name when I was a child.



Girl with frustration and fear

I don’t know about you, but (sometimes) when bad things happen to me my first instinct is to think, “Who’s fault is this?  Who is to blame?  Who did this to me?  Why?  Why did this happen?”  These aren’t pleasant thoughts (obviously), but I am human and imperfect and I have a lot on my plate to deal with.  And, these are the thoughts I struggled with all day yesterday.  So, when I see that my thoughts are going a bit wonky I know that is the best time for me to sit and write.

Yesterday I found out some less-than-good news.  I don’t have Medicaid.

The transition from the local medical coverage I had to Medicaid was supposed to be seamless.  This previous coverage carried me through 2 brain surgeries and countless ultrasounds and even a colonoscopy, for this I am very thankful.  I knew that with Obamacare starting (or whatever you choose to call it) there would be problems for me.  Many problems.  That is why I chose to have the hysterectomy last month, under the previous coverage.  Because I was freaking out about what January 2014 was going to be like.

Cut to January 2014.  Here I am.  I am living it.

Around October of last year I received some paperwork that said I was denied Medicaid coverage.  When I called about it the case worker told me it was just a formality.  Of course I was denied because I had the other coverage.  “Don’t worry Heather.  All is OK.  It will be fine.” I was assured.  Silly me.  I believed them.

As I looked at my planner for January (there are 5 appointments with my “team” this month) it dawned on me that I had not received the new insurance card yet.  I knew that I needed this card before the appointments and procedure (and before I see the surgeon again to release me back to work), so I called Medicaid Customer Service yesterday.  After waiting on hold for 1 hour and 48 minutes, I talked to a guy who told me the stellar news:

I did not have any medical coverage.

You know that paperwork I received in October?  Yeah.

Do you realize the weight of that statement?  Do you realize how scary this is for me?  I have a freaking brain tumor and genetic condition.  2 rare diseases.  There’s nothing for me as of today.  Am I now a statistic? One of those people who will lose everything (not that I have anything to lose besides my DVD’s and a few of my Dooney & Bourke bags), but COME ON!  This is serious!  This isn’t funny and this is not a joke. This is real life. This is my life.  What am I supposed to do with this?!


Pic from the Global Genes Patient Summit 2013

As I talked with the Customer Service guy (and choked back tears) he created a live application for me (I didn’t quite understand it all. He just mentioned yesterday’s date a lot and that things would be retroactive to the first of the month if I get approved.)  Did you catch that though?  IF I get approved.  IF.  There’s a lot behind the word “IF”.


conjunction \ˈif, əf\

—used to talk about the result or effect of something that may happen or be true

So.  Affordable Care Act?  Thought you couldn’t risk being denied?  I do not understand it all.  And yesterday, my mind was spinning.  I felt sick.  My neurosurgeon appointment; oncologist appointment; surgeon appointment; endocrinology appointment; and I had a thyroid ultrasound scheduled for Friday but I did end up rescheduling that to February.  On top of all that, I was due for my breast MRI in December but had to delay that due to the hysterectomy.

Whew.  My heart is starting to beat faster even as I type this today.  😦  I don’t do uncomfortable well and right now I am very uncomfortable with all these unknowns.

As this was all happening yesterday and I did all I could to keep my thoughts calm and positive, I kept thinking to myself, “OK, self.  You need to do all you can right now.  Exhaust all your possible resources in your favor.”  I called my surgeon and my primary doctor and left messages for them.  I will ask them if they will write a letter on my behalf that I will send with the further application that will come by mail in a few days.  I don’t know if it will make any difference but who knows.  Maybe it will.  I can hope.  Sometimes, my hope falters though.  Evidently here is an object lesson for me to put hope into practice.

Whew. For now.

All is well.


(Photo credit: Orethorn)

Ovary and Dairy Queen issues were false alarms.

The discrepancy on my ovary, I guess, was technician “technique”. 7.1mm was well below the “normal” 10 mm. range. I’m not 100% clear on what range we are measuring, but hey, normal is fabulous.

Dr. L didn’t feel the suspicion on my Dairy Queen today!  I thought she moved rather quickly from the right DQ to the left… and when I asked her about it she said it felt normal.  She felt a “fullness” last week that she didn’t feel today.

Not a mass.

It is what it is

Today I worked out with my trainer M.  It felt good friends.  Real good.  Bicep curls, tricep kickbacks, squats, suicide sprints, etc.  When we were at the end of our session we did an exercise on how to help quiet my mind.  Deep breathing, smiling, positive thoughts.  (I told her about the problems with EDD, no payment from them, the $400 co-pay I owe to get the hysterectomy approved, etc.)

Tomorrow afternoon I see Dr. L (oncologist) to follow-up on my right Dairy Queen.  To see if the “suspicion” is still there.

I shall stay calm in moments of stress and anx...

(Photo credit: deeplifequotes)

More soon.

“With you we have to be really careful”

The above quote is what the radiologist said to me yesterday morning.


Part of me feels happy and encouraged with hearing this statement.

But then the other part of me struggles with the magnitude and the weight of it.


I got to the hospital at the scheduled time, 10:30 AM.  By the time the front office girls got everything in order, it was close to 11:30 before I got into the room.  I expressed to them several times, “Dr. L (oncologist) told me that the Radiologist is doing the exam.”  {Note:  I don’t ask questions really about rules or protocol.  If that’s what Dr. L said was going to happen, then you can bet I’m going to make DARN SURE that it gets done.  I don’t really give a rip if Dr. C (radiologist) doesn’t normally do pelvic ultrasounds.  I just am following the instructions of my oncologist.}

Ladies Room

Ladies Room (Photo credit: Vassilis Online)

Now, for you ladies who have had a pelvic ultrasound, you are acutely aware of the FUN I experienced in 2 parts!  After Part 1 was complete I don’t think I could have run any faster to the Ladies Room!  That’s where I met Dr. C in the hallway and he asked, “Are you Dr. L’s patient?”  [He said the giveaway was me returning from the restroom. HAH!]

Dr. C didn’t actually do the procedure but he was present in the room.  Poor technician girl was so nervous!  I could feel her anxiety around him!  He asked her for measurements of my left (and right, I think) ovary and then I heard him say, “endometrial stripe”.  No clue what that is.  I need to ask Dr. Google about that one.  And then I heard him say, “Well within the normal range.”  And then, “Sorry if I scared you.”

Bottom line, (I hope/think/pray/feel) is that this repeat procedure was just my doctor being cautious.  There was some discrepancy with my left ovary and further study was warranted by some of the medical professional who “take care” of me.  I’m OK with this (the further study, repeat ultrasound.)  Even though it did cause some deep fear in me for a while.  What’s the alternative, right?  

Next on my to-do list?  Get to my appointment next week and have her check my right Dairy Queen again to see if she still feels the “suspicion”.

Man.  Cowden’s Syndrome is an effing BEAST!