Whose pink shirt is that?

I guess that’s my pink shirt?

It was probably in 1998 when we attended our first Susan G. Komen Race for the Cure in Central Park.  Mom had spent 1997 undergoing 2 separate mastectomies, and enduring chemo.  Just to top it all off she began a run on 5 years of Tamoxifen

By September of 1998 she was back to her feisty self, raring to go – so we went.  We have gone almost every year since then, save for maybe 2003 when I gave birth to Meghan in August.

A few years ago a dear friend, a new survivor joined us.  So one very early Sunday a year, we pile into my Mom’s car and head to Central Park.  We look through the stands that are set up.  We “shop” for some free goodies, and we pay for some too.  Then we head back to the car and drop it all off so we are ready to walk among 25,000 or so survivors and supporters.

We push Meghan in her chair, as  the 5K would be way too much for her, but she won’t do without cheering Grandma on.  She makes Grandma a banner to hang on her shirt – usually a picture of the two of them.  It is a morning of (exhausting) celebration.

Our walking group

So it was Meghan.  It is always Meghan it seems, who pointed out to me about a week after my diagnosis of DCIS, that I needed a pink shirt for the race this year.  When I asked her why she said, “because you had breast cancer too.”

I thought about that for a few minutes.  It was early in the game so the ramifications of what I had been through had not yet fully sunken in.  I guess technically she was right.  I had the pathology report in my hand.  It clearly said DCIS.  The breast surgeon clearly called it cancer, and reminded me that a few more months would have put me in a “fight for my life.”

But I had been to those races for many years.  I had looked at the resolve in the faces of the survivors.  The bald heads of the women still in treatment, and I had read the signs and tributes to those who had fought and lost.  I had watched my own Mom endure chemo and years of tamoxifen.  Surely I couldn’t put myself in the same class with these ladies?

I suffer I guess with a bit of “survivors guilt.”  Some people might chuckle at the thought that my road has been easy, but of course everything is relative, and it is all about perspective.

I did commit to a prophylactic bilateral mastectomy to reduce my imminent cancer risk.  That in and of itself is a pretty big deal.  Finding out I already had cancer, rocked my world.  Knowing that I had already done everything possible to prevent any spread or recurrence, gave me some much needed peace of mind.  Angels, especially two I love (one here on earth, and one in heaven) named Meghan, had already kept me from being hurt by Breast Cancer.

Am I a survivor?  You bet your ass.  No genetic mutation, not PTEN, no Cowden’s Syndrome will take me, or my girl. I am blessed with the knowledge to screen, and the benefits of early detection.

Do I deserve to be in the same ranks of these breast cancer survivors?  I am not so sure.

But, I have this pretty pink shirt.  And these fake boobs.  Maybe that in and of itself makes it OK. 

No matter what I will consider it an honor to walk among some of the strongest women I will ever know.

Race for the Cure Logo

Beating Cowden’s heads to Facebook!

Today I felt very brave.  Today I felt like shouting.  Today I wanted everyone in the world to know that people have Cowden’s Sydrome – and sometimes it is OK, and sometimes it sucks.  I wanted to raise awareness, and to touch some folks who may need an ear.  This is my way.  This is my outlet.  I can only hope it helps someone.  So, I will continue to post here, but I will link all my posts to the Facebook page with the same name – “Beating Cowden’s.”  Hope to see you there!

Realizations…

I love my family. Especially when we get some time away from the nonsense of daily life and just get to enjoy each other.

Vacations are necessary. Big or small, they are critical food for the soul.

Our life isn’t easy, but I am extremely proud to be the mother of a graceful, articulate and well mannered young lady who is learning to take a lot in stride. She isn’t perfect. None of us are, and there will be growing pains as she defines who she is, but I am already proud to be her Mom, and I know that pride will continue to grow.

I have spent  the last 5 days amongst thousands of people and there is not one who I would willingly trade places with. I have seen kids…oh so ill and the anguish in their parent’s eyes. I have seen whiny, bratty kids, with parents who I am glad not to know.  I have seen kids who struggle, making every attempt to fit in, in a world that is overloading their senses.  I am grateful for our struggles, they have made us who we are. I do not want anyone else’s.

It is nice, and necessary to spend a few days with no doctor’s appointments.

I am glad to have a Mom to watch my dogs and give them the royal treatment for me.

I miss writing every day.  This bog has been therapeutic for me.

I can not stand the touch screen on my daughter’s IPad…and likely won’t write again until we are safely home.

These are my realizations for today.

Be well all!

 

Father’s Day

Some days it’s not about Cowden’s Syndrome, or tumors, or doctor’s appointments.  Some days life just is about life.

Father’s Day.  A day to celebrate the fathers in our lives.

My husband is the best dad in the world.  I mean it.  And he is a pretty amazing husband too.  There aren’t enough words to describe how lucky I am.

My Dad, tries his best.  He and my mom divorced when I was 5.  He has struggled with his own life through the years, but we have stayed in contact.  He does the best he can.

My stepdad, married my mom 24 years ago.  He inherited 2 bratty teenagers and has loved us as his own from the beginning.  He has put us through college, paid for 2 weddings, fixed houses, and been there through it all.

My Pop, my mom’s Dad is 92.  A WWII veteran, and a retired firefighter, he is amazing.  He and Grandma still live on the second floor of their own house.  We lived in their house for 15 years, and they became a second set of parents for us. Now they are Great Grandparents.  They pick up my daughter on half days, and love spending time with her.

Today my heart is heavy though. My stepdad’s father is suffering.  When his son married my mom 24 years ago, they had no grandchildren.  They didn’t expect to start out inheriting two teenagers, but they did.  And they handled it gracefully.  Over time Grandpa came to love us in a very special way.  He is especially attached to my daughter, who he calls “Sapphire.”  He even made sure she had a special sapphire necklace to always remember her name.  He has been brave his whole life and has fought cancer in more places than I can count.  He has been in the hospital for a month now, and this is it.  He is ready.  He has had last rites.  He has asked his boys to take care of their mom.  He has told God he is ready to go.  So we wait.

Today we remember the fathers, grandfathers, and great grandfathers that have touched our lives.  We hug some, and we miss some.  We acknowledge their impact on us.

And today in my house, we whisper constantly a prayer to God.  Today it’s not about test results or surgeries.  Today we ask that He be merciful.  Grandpa is ready to rest…

Falling Stitches, and other Hysterectomy Recovery Issues

Johnson and Johnson Band Aid 2
Johnson and Johnson Band Aid 2 (Photo credit: Wikipedia)

WARNING, some of this text may be a bit graphic, and might be better reserved for those recovering from a hysterectomy!

Enough with the bleeding already.  That’s it.  I am done.  Over it.  I had my hysterectomy 2 weeks and 2 days ago.  I didn’t know headed in that I was headed for 4 to 6 weeks of bleeding.  I thought this was supposed to make the bleeding STOP!

I guess if I had stopped long enough to think about it, I would have realized that the removal of a few things inside of me makes it necessary to stitch up a few other things, and as they heal it’s not unusual for them to bleed.

BUT, what is with the stitches?  (No not that STITCH!  You know what I mean!)

Stitched up Stitch
Stitched up Stitch (Photo credit: amesis)

Really it is easier to heal mentally from an external surgery than an internal one.  At least from the mastectomy I could watch the wounds close.  I could be sure I wasn’t doing too much.  I watched the bruising fade.  I knew I was getting better.

Now, just when I think this bleeding is letting up, (and it’s not  all THAT heavy, but just REALLY annoying) a stitch falls out of me, I begin to cramp, and on go the faucets again.

Faucet
Faucet (Photo credit: Joe Shlabotnik)

The doctor said the stitches are coming out a bit too early, but apparently they don’t care, because they are coming fast and furious.  Apparently my body seems to understand me when I say that stitches belong outside, not in.

What I want to know is why every time I think all is calm, there is this surge of blood.  Enough to scare the heart out of me.  Then, just like that it stops.

It seems to be taunting me.  Daring me to switch to the lighter pad, but I won’t do it.  Not yet.

I have cramps today.  The kind I would equate with sore boobs, and a craving for chocolate while I wait for my period.  Except, I don’t have any boobs – at least not ones that will be sore, and I won’t be getting my period ever again.

So what is with these cramps?

I am convinced stitches belong on the outside, where you can keep an eye on them.  I told them my body doesn’t like dissolvable stitches.  I guess I have to sit tight and wait while it cleans them out.

At least I am a professional at healing.