Tag: bilateral mastectomy

Today Was a Difficult Day

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There is no longer a need for pain meds. At least not the ones that heal your physical pain.

The pathology, all nine pages of it, has been sent to several places for “additional review” due to the rare and unusual (who is surprised?) although thankfully benign tumors throughout both breasts. No, they were not “just fibroadenomas.” No, they would not have “resolved themselves.” No, they were not “just hormonal fluctuations.” What they were, were warning signs, and a confirmation that the right thing was done.

“Your story has a double mastectomy in it.” That is what she had been told. The only variable was where it fit in the plot line.

Deciding when to have a double mastectomy is not an easy decision. As a 21 year old it is another epic step in a way too difficult journey. But, it is one that no one, not Meghan or her medical team regrets.

Today was the second post operative visit. The drains were removed Friday. The incisions are healing. But, today was a difficult day.

Today was the day where my beautiful girl, so beaten down and traumatized by the cruelty of humans was left vulnerable and once again in a waiting pattern.

Wait, it’ll get better. Every. Single. Time. They kept saying it her whole life.

You’ll feel better. You’ll meet new people. People will step up. The pain will lessen. It’ll get easier.

Except it didn’t.

Not the pain in the leg, or the diffuse pain of being bullied, abandoned or silenced for being “too much.”

Today she went in with scars fresh from the cancer prevention amputation that was her New Year’s Eve date. Today she went in bruised and scarred and trying to find her footing in this new body.

Today she was greeted with kindness. She was treated with respect. But, she was given words that hurt.

You. Have. To. Wait.

She knows patience. Trust me. She has waited in offices. She has waited for pain to subside. She has waited, better and more gracefully than most.

But, my girl is a do-er. She wants to do it, and put it behind her.

No one spoke about this waiting place.

This place where you just wait for scars to fade, and swelling to subside. Where you wait until you don’t feel like you are looking at a stranger in the mirror. This place where you wait to feel comfortable in your own skin, in any clothes, or just at all. This waiting place where mental torture reminds you of years of trauma and of never feeling quite enough. This place where you crave talking, but so many run because the sound of your voice is too much for THEM.

This place is not where she will stay forever. But, it’s like her car is out of gas, and the nearest station is too far away. She must pause and wait on the healing and try not to lose herself in the relentless noise in her head.

I’ll put her fall Dean’s List certificate in her scrap book while she works on her final undergrad semester remotely after this exhausting day.

The next post-op is in three weeks.

Today was a difficult day indeed.

Cowdens is hard work. It is not for the faint of heart. If you love someone with this wicked syndrome or any like it, be present. It is everything.

#beatingcowdens

“I Support The Girls”

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Years ago when we went to have Meghan professionally fitted for a bra, Tina was kind, helpful and just a wonderful human. She fitted Meghan a few times through the years and at one point the conversation traveled to what to do with the ill fitting bras that had led us to her in the first place. That was when she offered to take them to an organization that supported women who did not have access to necessary feminine products.

We gratefully handed over a small bag of bras to Tina, knowing they would go to a good place, and we moved to a place of gratitude that we had means to buy ones that were better fitting.

This double mastectomy on 12/31 definitely will require a wardrobe overhaul, and the bras will certainly never be remotely close to the same size again.

So, as we emptied her drawers of bras this week, we thought back to that conversation from many years ago and wondered if there was still a need for such donations. I reached out to Tina and she put me in touch with “I Support The Girls,” an organization that strives to “Make Dignity the Norm.” Sarah immediately reached out and provided a donation address. The box is in the mail. What a basic concept. Dignity and decency. I encourage you to take a look. https://isupportthegirls.org

In a tough time – we have taken great solace in knowing that even though Meghan will not use the bras again – someone will happily and gratefully receive what we can now easily give.

#beatingcowdens

The Glider- from Birth to Bilateral Mastectomies

Published on by beatingcowdens5 Comments

The glider I added to my baby registry in 2003 was arguably the piece I cared the most about. I am not big on stuff, and am unimpressed by “fancy.” I am all about practical functionality.

That glider housed my wide bottom as I awaited the birth of our precious child as she took her sweet time to arrive 10 days late. It held our girl Meghan in the arms of countless relatives and friends who stopped by in the earliest days of her life.

I held her in that glider in the summer of 2003 when the east coast blackout left my sweaty postpartum body begging for some type of a breeze, as at just a few days old, clear signs of colic were showing.

That glider held us for story time and bottles.

The glider held the two of us for the better part of most nights, when despite being told I was spoiling her, every instinct in my body told me not to leave my baby. No matter how bone crushingly tired I got. I knew not to leave her when she was in pain.

And when I was so very tired that I was afraid I’d drop her I would strap her into the Baby Bjorn just in case, and tell her stories from memory, like “My Most Thankful Thing…”

There came a point where we couldn’t fit in the glider together, but even as I knew we’d never have another child and I donated most things, I never parted with the glider.

She snuck in there with me in 2011 when we were processing the news of our Cowden’s Syndrome diagnosis. She sat next to me in 2012 while I used that glider to recover from my “prophylactic” bilateral mastectomy that gave me a “surprise” diagnosis of stage 1 DCIS.

The glider stayed in her first bedroom when the middle school years moved her upstairs and I claimed her old bedroom as an office.

After our then puppy Jax decided the paint on the wall was irrelevant and he used the glider as a battering ram, we repainted and moved it upstairs to her new room.

Every once in a while she would read in it and let her fantasy books take her away from middle school days that were too cruel for words.

She recovered from Covid in that glider.

That one piece of furniture has so many stories to tell.

But this story, the one where I sit across from my 21 year old baby sleeping in the glider, this is one I wish it didn’t have to tell. Or maybe I’m grateful it can be told this way. It is certainly one of the times perspective is critical.

I have so many emotions right now, less than 24 hours after my baby had a bilateral mastectomy and is recovering in the very same glider that has been a huge part of our lives.

She walked into NYU at 1:30 on 12/31 armed with the knowledge that it was her choice to take some level of control of a life that is so often in a free fall. Breast screenings began soon after she turned 21 and a BIRADS 3 screen in August was followed by an MRI that just could not tell her all was ok.

“Probably benign” is not an acceptable finding if you’ve ever met Meghan, especially when it showed 7 distinct and some sizable masses. Already.

We met a plastic surgeon in October who immediately put her at ease. He walked in having read her history and said, “What can I do to help?”

The most current, albeit small, longitudinal study of 700 patients puts PTEN Breast Cancer risk at 91%.

Meghan pays attention. Her maternal grandmother who does NOT have a PTEN mutation had bilateral breast cancer at 48. Her PTEN mutated mom had hers at 38 with a history of 8-10 surgical biopsies spanning the 14 years prior.

A mastectomy was always part of her story. None of us realized it would be this soon.

Cowden Syndrome gives you the tools to screen for our many cancer risks. It also empowers you to not ignore them when those screenings fire a “warning shot.”

The plastic surgeon said pathology will tell the final story but her breast tissue, like so many other parts of her, was older than her 21 years.

Over these last few weeks as we have slowly shared the news of this upcoming surgery, without fail the people who Meghan admires and respects are the ones who have come forward to tell her how brave and smart she is. They tell her how wise it is to control this one thing, in a life that has been too full of unfortunate surprises.

Those who have judgment, or seek only to gossip should keep moving. The older we get the easier it is to sort out who we need by our sides.

I stare at my baby, all grown up in our glider, and I vacillate between sadness and immense gratitude. I despise the ferocity with which this syndrome has made every single thing harder. Yet, my heart bursts with pride as she just continues to overcome things most others cannot comprehend.

This is not her hardest surgery. That hell on earth took place in June, but this one also deserves some time to rest.

Rest my girl. You’ll start that last semester of college a little late, but you’ll be ready. Misericordia Class of 2025 and Misericordia Class of 2027- Master of Physician Assistant Studies. The medical field needs you – and plenty more others like you.

I hope when you sleep you feel my love, and the love of all who ever held you in that glider wrapped gently around you.

I am so proud to be your mom, and we are together…

#beatingcowdens

Comfortably numb

Published on by beatingcowdens1 Comment

I walked into a meeting this afternoon at the tail end of the work day.  I brought the key to my room, and my phone in my hands.  I sat and listened to the presenter, and as I got up to leave I gathered my things and realized my key was missing.  Lately I have been losing everything.  Maybe its stress, maybe estrogen loss, maybe I am just getting old.  Who knows?

I looked everywhere.  This year we were each given one classroom key, which also unlocks the bathrooms.  It is a really important key, and I have been so careful.  I even make sure I have pants with pockets every day so I can keep track of it.

I dumped the bag one last time, checked my pockets and checked my coat.  No key.  Realizing I was running late for Meghan‘s swim class, I resigned myself that I would have to look for it tomorrow.

Walking down the stairs something gold caught my eye.  I looked down and there in the breast pocket of my shirt was my key.  I only knew it was there because I saw it.  That was when I was struck with laughter and remembered that

I always keep my key in my PANTS pocket, because I can feel it against my leg.  No idea how or why I put it in my shirt pocket, but I won’t be quick to do that again.

They may be firm.  They may not sag.  But they certainly lack the feeling of being real.

Nothing like being able to laugh at yourself when the day is a bit rocky.

It’s been over 6 months, and I guess I am used to the new girls – because most days I don’t pay them any mind.

On the way out of the building my Assistant Principal asked me if I had found my key.  I told him I had, but when he asked where it was I spared him the details.  “TMI,” I said.

I went to pick up Meghan humming “Comfortably Numb,” the whole way.   Probably not exactly what Pink Floyd had in mind, but hey – it works for me!