Me 2 – Cowden’s – 0

The surgeon called.  Two days earlier than I expected.  My heart flipped a little when she said, “I have your pathology.”

“Everything looks great.  It was all totally benign.”

Big Sigh…   Thank you God.  No more cancer.  No more surprises.

For a moment there was doubt.  Was I too rash?  Should I have waited? Then, reality.  They told me there would have to be a surgical uterine biopsy every three months.  The scar tissue was already extensive.  One ovary was twice the size of the other.  There were cysts everywhere. General anesthesia is getting harder for my body each time.  Who has time for surgery every three months?  The worrying. The waiting for when it will hit.  No… I was right.  This was necessary.

Can I have a copy? I asked.

Well, aren’t you coming in next week?

Yep,but I need to see it.  I need to hold it in my hands.

The beep of my fax confirmed receipt of two pages.  Totally benign pathology.


Breast Cancer 85% lifetime risk. Got it, but got them off in time. I win.

Uterine cancer 28% lifetime risk (or something close.)  I win.

Two less areas to screen compulsively.  I really win.

Watch out Cowden’s.  I am up 2 nothing.  People say I am not that competitive, but when it’s important I play to win.

And I will.


The phone call continued….

After I left off on the last post the “nice” man had the misfortune of coming back ont he line and reminding me AGAIN, that I had NO IDEA how difficult this was to work out.

I made him wait before he put me on hold again. “In the fall of last year my daughter and  I were both diagnosed with a rare genetic disorder that no one seems to have ever even heard of.  The few doctors who have, or who are willing to learn, have put us through every test imaginable.  In March I had a mastectomy to protect me from breast cancer.  I was pretty surprised to find I already had it.  Last Wednesday I had a complete hysterectomy.  I am 38.  I was told the risk of NOT having one was too great.  My 8 year old daughter has grown 7 cm in the last 5 months.  She has grown 2 shoe sizes.  She now stands 4 foot 9 and 73 pounds, and will not turn 9 until August.  Her endocrinologist, the local one – not the cancer specialist she sees for the thyroid – has tried to educate herself about this syndrome.  She examined my daughter and said it may be precoucious puberty, but it may be too early for that.  Sometimes a tumor can hide and mimic puberty.  I know a mom whose 8 year old has Cowden’s.  She is 22 now, but at 8 had ovarian cancer. They had told her it was precocious puberty.  We are at a doctor, for something, AT LEAST once a week, usually more.  So, if you think I am crying because I am weak.  Think again.  I am crying because I don’t want to yell at you.  I am crying because I am exhausted.  But, if you tell me one more time “I don’t understand” how difficult this is, I WILL explode.  You think it’s difficult to schedule.  TRY LIVING IT!  This is MY LIFE!”


Still Silence.

Hello? Are you still there?

The “nice man” on the other side of the phone says simply, “Wow. I had no idea.”

“I know.  But you do now.”

Yes.  And I am going to make this happen as painlessly as possible.  I will call you tonight. (HAHAHAHA I thought)

The phone rang at 5:30.  The breast sonogram will be today, right after the pelvic.  Someone from the breast imaging center will walk over to where we are to oversee.  The results will be available to my doctor by Tuesday.  It will be a long weekend, but we are used to that.

Maybe he is nice man after all.