A new one

Yesterday I saw a man about my uterus.  A new doctor is now added to my “list”.  I think this makes 5, if not more.  I’m not sure what I’m going to do yet.  But I needed to talk to someone about the option of a hysterectomy and what it would look like, stuff like that.  I really liked Dr. K, but I was surprised he wasn’t as on board with it as I was.  He mentioned the Pill, but since I’m 40 and did that, read the book, saw the movie, bought the t-shirt, I’m not really into that at this point in the game.

He wants to learn more about Cowden’s (obvi) and talk to a GYN-oncologist (who knew there EVEN WERE such doctors?) and see me again in 3 months.  I’m not chomping at the bit to get this done ASAP, because even though the uterine cancer risk is like 5-10% or something like this, it’s still SURGERY.  And I’ve had quite enough of them to last me A LIFETIME.  I don’t know.  I’m not sure what I want to do.  I know this is all on me, unless things change and I am FORCED to make a decision.  I kind of hope that doesn’t happen but who knows.

It’s soooooooooooooo final.  FINAL.  FINAL.  There’s no going back.  No changing my mind.  EVER.  And part of me still holds on to a small sliver of hope, albeit it super tiny, that maybe one day I’d be a mother myself.  But then I get the slap in my face of Cowden’s Syndrome and I recall, “Oh crap.  That’s right.  This is hereditary.  Even if I had a 0.00001% chance of passing this on to my child I COULD NOT and would not risk it.  Especially since LDD comes with it.  I could not put any other human being in a risk of getting that or dealing with a craniotomy.  I just refuse to.  So, then that puts me back to my uterus…what it is providing me?  Unnecessary pain and drama every 28 days or so?  YEAHHHHHHHHHHHH.  No.  I’m over that.

Then…I move to next Wednesday.  I’m finally scheduled for my colonoscopy and endoscopy.  HUM.  These are all part of the lifelong screenings that CS is forcing me to do.  There’s a clinic in Cleveland that studies PTEN mutations and they say that I am to get biannual colonoscopies.  YES.  You read that correctly.  I’m not even sure how that would work!  They are pretty dangerous in and of themselves (maybe not dangerous per se), so how in the crap and I supposed to have them every 6 months?  Plus I am having a freaking breast MRI every 6 months too?  UGH.  I don’t get this.  I am supposed to have a life where I live it and work and enjoy things (like going to Disneyland)…but then when I sit down and get to the real part of my life (where Mickey doesn’t live) I get overwhelmed.  I get sick thinking of the brain tumors and wonder why.  But “why” can be a dangerous 3-letter word for me so I try to not let it take up space in my mind too much.


One thought on “A new one

  1. We actually made a list of all the regular doctors that we need to see, for screenings, and follow ups, for the two of us. It was disturbing. I spent a good deal of the least week trying to schedule those “routine” appointments around our work/school schedule. Granted not all are CS related, but really – it gets OLD fast. And yes, I would consult with a GYN-oncologist if you are seriously thinking about it. The one who did mine was familiar with genetic disorders, (moreso BRCA, but she had heard of Cowden’s) amd was super helpful. ONE STEP AT A TIME!!!!

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