What do I know today?

I will not write my feelings about the “news” and President Trump.  I will not write my feelings about what I fear of the future of our country.  But one thing I’ve learned lately is:  feelings aren’t facts.  I wish the fake news networks knew this!

That phrase helps me immensely, especially when it comes to my medical status.  I have a growth (tumor?)  on  my tongue and have a visit with the ENT this week.  These growths aren’t new; that’s the whole Cowden Syndrome thing in a nutshell.  Without going into too much gritty detail I have seen an ENT before about these things, and he told me I would have to go to the O.R. to have them removed.  I am scared.  I am terrified, to be very honest. I don’t want any more visits to the O.R.  I have to center my attention and energy on what I do know.  And in fact, I don’t know anything today.  Maybe he can snip it right off?

This new growth is large, again new, and here’s what I find most peculiar about this entire thing:  when I was 2 years old I had surgery to remove a “growth” on my gigantic tonsils.  My mom just told me the thing on my tongue now looks almost identical to what was on my tonsil over 40 years ago.


Of course not.


Writing is therapy

That’s what I have been told.  And read.  And while that’s not why I initially started this blog in 2011, writing has essentially developed into another way for me to process everything now in my life.  There has been something going on in my mind since last week but I haven’t had the time to sit in front of my computer to really think about it.  To really process and ponder about it.  To give it some thought and consideration.

Before I start that, well-meaning people tell me “You must be positive” quite often.  And, while I believe that and want to be a positive person, sometimes it’s really hard.  Sometimes, the weight of the pressure of life is overwhelming and I just need some “life is really scary right now” time.  Last week at the ENT doctor I had a wave of the “life is really scary”.

Part of Cowden’s Syndrome is having a “cobblestone tongue”.  (Google it if you need to)…and several months ago I noticed a bump on my tongue that was growing noticeably bigger.  (Now, I don’t know about you.  But anytime I have something going on with my body that is NOT NORMAL it causes me some angst.  Cowden’s Syndrome and Lhermitte-duclos Disease now makes that angst even GREATER.)

And, it hurt.  Big time.  Since PTEN mutations causes me to “GROW THINGS” (ugh; gross I know) my biggest concern was that this tongue bump was on the fast track to STARDOM and was getting bigger by the moment.  I talked to my primary doctor and got the necessary paperwork for the referral to the Ear, Nose, and Throat doctor.

So, last weekend happened.  While I needed him to look at my tongue I also needed him to look at the inside of my cheeks because I had 2 other bumps.  (Thanks a freaking lot Cowden’s Syndrome!) – This was a new doctor to my “team” and I was sort of impressed at first with him.  (There was something that he needed that I wish I could have offered him.  I don’t mean to be disrespectful but hey.  If you’re going to be THAT close to my face can’t you please ensure you have this ONE LITTLE THING addressed prior to meeting my FACE?!) –  He said that if he was to remove the bumps on my tongue we would have to go to the operating room to do so.

I don’t know why.  But, it brought up so much terror and anxiety in me.  Anxiety because my new motto now is, “JUST SAY NO TO SURGERY!”; but also my concern that if I wait and don’t address this bump on my tongue it will grow bigger and then what?  And then surgery is more complicated?  I don’t know.  But, I do know this.  “Cowden’s Syndrome tongue” is not pretty. You can search for pictures if you’d like but I wouldn’t really recommend it.  By no means am I an involved case (thankfully) but there’s always the “what if” that I may become that.  Does that make sense?  He explained that the tongue is very vascular and blah, blah, blah.  To be honest.  I don’t remember much of what he said to me after “Operating Room”.  The thought of Cowden’s Syndrome doing this to me again was just TOO MUCH FOR MENo more surgeries for fun, for frolic, for brain tumors, for preventing uterine cancer, for bumps on my tongue.  NOTHING.

Moving on, we looked at the bumps in my cheek.  I have one on my upper right cheek and had another on my lower left cheek.  The upper one was small last week so appeared to be a non-issue (to him), but the one on my left cheek was much larger and had a different shape.  The word “stitches” was tossed out in this exam room.


Stitches in my mouth? How is that even going to work?

In past experience I know that the shot hurts more than the procedure itself, and this case wasn’t any different.  After he removed the bump he said I needed 1 stitch, probably 2.  And he proceeded to sew up the inside of my mouth with sutures.  I was holding it together until I felt the suture against my lip and saw the suture coming out my mouth as he was tying up all the loose ends (BAHA).  I got a bit woozy at that point.

The kicker is that I’m probably not immune to surgeries or medical procedures at the ripe old age of 42.  Granted, 3 surgeries since 2011 is three too many in my book, but with the track record of Cowden’s Syndrome I think I have to prepare myself for what’s to come.  Life is  a time to prepare.  I get that. And I guess I’m learning that the hard way, whether I wanted to or not.

So, this is my therapy for today.  My story.  My life.  Me.  There isn’t an opportunity for me to share this with anyone, so thank you for reading.  It’s good to have this little place of the Internet where I can be me and get all of this out.

The upside of Cowden’s Syndrome

Well, to be honest, there isn’t really an upside of Cowden’s Syndrome.  I mean, you can have a brain tumor, or get breast or colon cancer.  But, one of the less “serious” issues of CS are these mouth bumps.  I’m not sure the technical name (you can Internet search it); if you search for “Cowden’s Syndrome tongue” you will get an eyeful.  In fact, now that I am typing this, I’d recommend you don’t do that.  It’s not a pretty picture.

Anyway, I have this huge bump, thing, growth, whatever, on my tongue.  HUGE, to me, is the size of a small mountain.  And, when it’s on your tongue, getting irritated when you eat certain foods, it’s not pleasant.  It bugs me.  It irritates me.  I can feel it all the time.  It rubs on the inside of my lips, etc.  But, in all honesty, it’s 4 mm. 🙂  I don’t care about technicalities, though.  It’s a pain in the butt!  Actually, I have 2 of these bumps on my tongue, and 2 on the inside of my mouth.  So, then there’s that.

I had 1 of these bumps right after diagnosis (Fall 2011), and I know I need to see the ENT doctor to get these taken care of.  So, I called the ENT office last week to schedule the appointment.  Of course they said I had to go back to my Primary to get a referral, etc.  I hate bothering my primary doctor and taking her time, but I guess she wants needs to see what’s going on with me.  And, I hate getting the run around, (or at least feeling like) I’m getting the run around.  See this doctor, then wait.  Then we will call you to schedule.  Then wait some more.  Urg.

You know, if Cowden’s Syndrome was just these mouth bumps, it wouldn’t be such a bear to manage.  🙂