Motherly Worries

Her bloodwork was Saturday – the bloodowork to check the hormone levels.  Wednesday I will take her for a pelvic sonogram.  They are still trying to figure out who will do the breast sonogram.  Everyone is afraid.  No one knows what they are looking for.  Major NYC hospital, and everyone is afraid.  It doesn’t instill confidence.  When you have a rare disease, no one knows quite what to make of the realities that we face.  But this is my girl and I will not put my head in the sand.  Someone will do it.

She danced this weekend.  It was her second recital.  She will not dance on Broadway, but to her proud parents her smile was worth a million bucks.  Her ability to move – courtesy of PT and Celebrex, and her award winning smile.  For a few minutes on that stage, she was just like everyone else.  Sometimes its nice to be “normal.”

In a few minutes I will call to schedule the next MRI/MRA of the knee to check on the “leak” from the femoral artery causing her AVM.  We will do that the last week in June, just in case she needs more surgery, there will be time in July.

Of course all that depends on the hope that our June 14th appointment to check on the thyroid nodules is uneventful.  “They are precancerous.  They will turn.  We just don’t know when…”  At some point she will lose her thyroid to cancer.  And we can only wait.

Sometimes its good to be home.  To recover from surgery.  To make some phone calls.  Sometimes it just lets the worry fester.  I can accept that I have this damn disease… but why did it have to mess with my girl?  As a new internet friend eloquently said – eff you Cowden’s!

Recovery and Body Image

My husband says I need to be more confident about my body.  He tells me that I am beautiful.  I am lucky I know, because he really feels that way.  He doesn’t understand my uncertainty at all.

I have always struggled with body image.  I have always exercised, and eaten fairly well.  There have been times of high weight, but my 5 foot 8 inch frame has always held it well.  The last few months have been a bit of a roller coaster though.

Anxiety medication worked to keep the heart palpiations and the panic attacks under control, but it couldn’t give me back my appetite.  I was down 30 pounds before the mastectomy. Now, 11 weeks later there are days when I forget.  I forget the breast cancer that hid from the tests, the mastectomy that was supposed to be prophylactic, and the silicone that now lives under my numb skin.  I forget – until I look.  Then I see the huge scars, and the slightly uneven implants – not a surgeon’s error, but rather the error of 7 biopsies slowly removing the skin on one side over 14 years time and my refusal to endure tissue expanders and all their extra risks.  I see…  I feel…

Now I am home recovering from the complete hysterectomy.  Another huge cancer risk removed from my list, but as I await the final pathology the reality that all my “girl” parts are gone – sometimes hits home, and it ouches a bit.  What will instant menopause be like?  I am not even 40, but I am sure I will know soon enough…  Will my thyroid go totally nuts -again?  Will I gain back every pound I lost?  What will happen to my metabolism, my body?

And what about all these screenings still to do?  There is already a harmatoma on my spleen, and a huge gallstone.  That is before we have checked the skin, the kidneys, the colon.

I have to focus.  I am not Cowden’s Syndrome.  I am only a patient who suffers from it.  I am still me.  Neurotic, loving, caring – me.  I will not let this disease define me, or my family.  If I do that, it wins.

So maybe today I will look in the mirror.  I will try to see the me that my husband sees.  I will continue to recover, again.  I will think about tomorrow when the sun will shine.  I will emerge from this  – better, stronger, more confident, and more beautiful.  If I let it happen.  I am not defined by the sum of my parts or by any disease.  I am defined by my soul….