There are days I forget.

I forget that it’s not just Meghan, but also me with this rare disease.

As a matter of fact, it’s actually uncommon for me to remember.

Maybe it’s survival.  Maybe it’s maternal instinct.  Maybe it’s denial.  Maybe it’s some combination.

But then there are days that it smacks me right across the face.  And it stings, no, actually it’s more like a scalding burn.

I post mostly about Meghan.  She’s my hero.  She’s my inspiration. She motivates me to be a better person, every day.  But,  if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed. 

I feel good.  I really do.  Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.

But there are the scars.  They hide behind my clothes like a little secret.  Cause people forget.  And that’s what I want, because most of the time I forget too.

But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time.  And my shirt doesn’t sit quite right.  And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction.  I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal.  It just wasn’t worth it to disrupt our lives longer.

I saw the plastic surgeon last week.  My two-year follow-up.  Hard to imagine.  She gently reminded me again that she could even things out whenever I was ready.  No cost thanks to the positive pathology for breast cancer, and the genetic mutation.  No monetary cost.  I’m not ready.  Yet.

I saw the breast surgeon last week too.  I see her every 6 months, so she can make sure nothing sinister is growing behind those implants.  The reality and the reminder that as fortunate as I was – I still had breast cancer.   And once you know for sure that those malignant cells had life in your body, you never look at things quite the same.  “No lumps or bumps,” she happily reported.  “See you in 6 months.”

I can’t wait.

And there are the lymph nodes in my neck.  They were checked last week too.  Sonogram.  As long as they stay stable, we can leave them alone.  “But, if they grow…” she reminds me every time.  Six months for her too.

And my legs.  Fitting into the smallest size they have ever in my life the veins are protruding again.  The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23.  But, it doesn’t really matter I guess.  The legs start with a familiar heaviness.  Then there is the throbbing.  The last thing I feel before bed, and the first thing I feel after the alarm gets shut down.  And the pulsing – like I can feel the blood moving the wrong way through the broken veins.  And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2.  I switch to “Bermuda” length and some sundresses.  I wait for the word that GHI has approved another vascular procedure.

Not to mention I saw the GYN Oncologist too.  Everything ramped up a notch with the “Cowden’s Syndrome” label.  There are no “regular” visits anymore.  Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital.  Two years since the hysterectomy too.  Time marches on. You can barely see the scars from the laproscopy.  But I know they are there too.  A few inches under the implant scars.  Reminders of the year that changed my life.  Our lives.

The week finished with genetics.  Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man.  He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis.  Then he drew my blood.  More genetic testing.  This time not because of the Cowden’s Syndrome.  This time, it is to fulfill the wishes of my father.  Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about.  We both said a silent prayer that the test yielded a whole lot of nothing.  We hugged again.  It’ll be about 6 weeks.

So this morning my shirt didn’t fit quite right.  The indentation on the right side was causing the shirt to fit lopsided.  And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take.  I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.

This is the reality she knows we share.  Yet, I want so badly to help her maintain some of her youth.  Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young.  There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.

It only took a minute.  Although it seemed longer.  A hug from my husband.  My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss.  And it was time to shake it off.

But not without first acknowledging that maybe that was quite a few appointments for a week’s time..

When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.

There are no coincidences.

And as we sang along, I looked in the rear-view mirror.

“Fix My Eyes”

Click the image to hear the song…

We are BEATINGCOWDENS… together!