Foobs- When Cowdens Meets Breast Cancer

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It was difficult to explain to the plastic surgeon how I had come to be sitting in his office this morning. The short answer of course, was that I wanted my breast implants evaluated for rupture as it had been three years since they were last checked.

The longer answer dredged up an awful lot in me.

In the fall of 2011, after years of medical issues, my daughter was diagnosed with Cowden Syndrome, a rare PTEN mutation that greatly increases the risk of multiple cancers as well as benign tumors, and vascular malformations. My diagnosis, as the carrier who passed that gene onto her, came a few weeks later. By all accounts it appears my mutation was de novo, and it went undiagnosed for 38 years.

When 2012 began, Meghan was 8 and I was 38. We both had complicated medical lives, and our diagnoses made sense. They connected a lot of ‘dots,’ but precious little was known by most doctors about what to DO once the diagnosis of Cowden Syndrome was made.

In the early months of 2012 I was sent to a breast surgeon to assess my risks in light of this new knowledge of Cowden Syndrome. I had been told a good deal of the cancer risks, including the upwards of 90% risk of developing breast cancer, peak at about age 40. I was closing in on that milestone, and I was reminded of that when I met the surgeon. She was a feisty red head who walked into the room armed with papers I had sent detailing the 8 previous surgical breast biopsies I had had dating back well over a decade.

I had gone to the appointment alone and was taken aback when she asked when she could put me on the calendar.

“For what?”

“A bilateral mastectomy.”

She was so matter of fact. I had lost my ability to speak temporarily.

“Your diagnosis, your family history (my PTEN negative mother had had bilateral breast cancer at the age of 48) make your future with breast cancer almost certain. I recommend you take care of this now.”

I remember trying to get her to agree on a summer date when she told me March 5th. I explained I was a teacher and I’d have time in the summer. She was undeterred. She sent me to her scheduler who set me up with a plastic surgeon where I needed to have a consult before March 5th.

I sort of remember the plastic surgeon. She was a tiny woman, kind in her soul. She explained all the reconstructive options in detail. I balked at each one wondering what no one was understanding. I was parenting a sick child. The sheer number of appointments and surgeries she needed left me marveling at how I still had a job. Coming into Manhattan for “fills,” and setting up ANOTHER surgery would not/ could not work. At the time my husband had a job with no sick days. If he was not at work, he was not paid. We carried two medical insurances to save on the co-pays that often felt insurmountable. There was simply no way to make this any more complicated than it was. I convinced her to reconstruct with implants that same day, despite her caution that I would not be happy with the results.

When the pathology showed cancer, a small spot of DCIS in the LEFT breast, a month after an MRI detected nothing, I decided I needed to just be grateful that the entire spot of cancer was removed and no treatment was necessary. Bullet dodged.

And just in time. My complete hysterectomy was scheduled for May16th of the same year!

Four years later, losing my MIND with agitation at the right implant, and sick of literally wearing a bra 24/7/365 to protect my overwhelmed sensory system, I sought out the counsel of a plastic surgeon. I looked for the surgeon who had been so kind to me in 2012. She was not “in network” with my insurance. Obsessed with keeping costs in check, I met with the only “in network” plastic surgeon from the same hospital. He was fine, and suggested changing the implants to see if it helped. I was desperate, asked few questions, and agreed in hopes it would calm things.

In August of 2016 he swapped them for a new set. It didn’t help. In hindsight the insult to my senses was most likely caused by tissue differences after a decade of surgical biopsies of the right breast. I kept the bra on and didn’t look back.

My “foobs,” a term we sometimes use to refer to “fake boobs” were the least of my concerns. My daughter, whose story is largely the one detailed through this blog since 2012, was constantly going through it with this damn disease.

I’d like to say her life calmed, and her medical issues settled, but they didn’t. What happened though, is somewhere along the way, decades of me tirelessly advocating for her made her a force to be reckoned with in matters of her own health. During her senior year of college, she made the difficult decision to remove her doomed breasts after they had begun to show changes and tumors. We used a few long weekends to interview breast surgeons, and she was led to a plastic surgeon. This surgeon, I was informed, accepts my health insurance coverage as out of network, and payment in full when it is related to genetics and cancer diagnoses.

When I saw the door to the office in the fall of 2024, I was transported back to 2012. I was in the same office I had been in, terrified and determined to keep my family afloat. I lost my breath for a minute, and recovered as quickly as I could. That appointment was not about me. And, the doctor was remarkable to Meghan. He was it seemed, almost inspired by her drive to get her own mastectomy done on her time table, and to not let any of it interfere with her acceptance to a Physician Assistant program.

Suddenly though, everything made sense. His associate was my surgeon from 2012. She was not “in network” and the chaos in my mind and soul during that window of time kept me from remembering the “payment in full” that they accepted from my health carrier. If I had remembered ANY of that, if I had not lost large portions of that window of my life to the sheer trauma of it all, most assuredly I would have been back with her in 2016.

Instead, I was left to give the shorter version to her partner this morning.

Brevity does not do this story justice.

The truth is, every piece of this Cowden Syndrome journey takes a bit of your soul. I raced through life from one crisis to the next for so long, that it took years for me to realize how atrocious my own reconstruction looked. I have spent almost 15 years looking straight ahead and avoiding mirrors.

When you are face to face with a plastic surgeon, it’s hard to know what you want them to say. This surgeon is not anxious to be the third surgeon on incisions that were not his own, and I can’t blame him.

So for now, we did an ultrasound and I have someone to verify the integrity of the implants. For today these “foobs” are strong.

The hard truth is that my aging body is allowed to exist because of choices I made. I meditate on that when I am really at a loss. Growing old is indeed a privilege denied to many.

I remain,

#beatingcowdens

Second Chances

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We rescued our first dog in November of 2005. Meghan was a toddler. A sick toddler. I was functioning with little sleep and trying to balance being a full time mom of a beautiful, yet painfully unhealthy kiddo, with being a full time elementary school teacher.

We were years away from having the Cowden Syndrome diagnosis on a day when everything changed. Her dad and I had her at another grueling appointment where she was being held down by unsympathetic practitioners and screaming with all she had in her soul. Her dad, desperate to make it stop, said, “What do you want? I’ll get you whatever you want.”

“A happy… yellow… puppy… I want a HAPPY… YELLOW… PUPPY.”

To which her dad said, “OK, you’ll get one,” and I cringed in my soul. I could barely manage the life we had. I had never even owned a dog. But, a promise was a promise, and we started the process of finding a puppy.

I knew nothing about rescues, and in hindsight we definitely took a puppy from a puppy mill, through the guise of a “Petfinder” website.

“Santa” brought Lucky in late November of 2025. In a frenzy we threw the tree up the night before and raced around the night before Thanksgiving (with all of its crazy traffic) to let “Santa” drop Lucky into our living room that November night.

All the joy and chaos of a puppy filled our house and our poor babysitter had her tasks easily double with the terrible twos now multiplied under her care. She was not yellow, but all was forgiven. She was happy, and full of mischief, and Meghan and Lucky bonded forever.

Lucky- December 2005
A girl and her first bestie- December 2005

And so from that moment on, there was always a dog, or two, or three in our house. We held onto the stability that despite all the medical chaos in our lives, we loved each other and we loved our dogs. We held it together, three humans and a canine or two or three. We stayed in the same home, and relied heavily on each other.

Decades passed and Allie and April, who never met each other entered our lives from different rescues. We loved them hard. They loved us back.

Top left white dog (clockwise), Angel April, Angel Allie, Angel Lucky, Ella, Buddy and Jax

Life continued and Meghan kept her head up through more medical and emotional trauma than a room full of adults could have endured. The effects became evident only to those who loved her closest through the years, and that is a very tiny list. The abandonment, the need to lessen her own suffering to make those around her feel better, took its toll on her. The anxiety became utterly oppressive. Medical conditions continued to surface. POTS affected her heart rate regularly, the daunting fatigue and nausea were sometimes insurmountable, and the ADHD that would remain undiagnosed until college was starting to surface.

So, it was no surprise in the early part of 2018 that she began to talk about a service dog. I left her to do her own research, uncertain of exactly what having a service dog would entail, but certain it would be complicated and expensive.

After years of rescue dogs, Meghan locked in on Medical Mutts, a rescue to train facility in Indiana. She decided that she did not need a pure breed. She wanted a mutt who had been given a second chance at life, and a renewed purpose, to be the dog that helped her in her darkest hours. I let her take the lead and she interviewed with the facility. She was placed on their list and told the wait time was typically 12-18 months. We were given the cost, and while about half of the charge of a breed-to-train program, the number was a gut punch. Through grace and guidance we applied for grants and were accepted by ECHO, the Emergency Children’s Help Organization local to us. They agreed to fund the dog and our travel to and from Indianapolis.

Now all we had to do was wait.

But, because nothing is without additional agony for Meghan the 18 months became almost 3 years, and it was in the middle of the Covid era, in January of 2021 that we were set to spend 8 days bonding with her new bestie, and preparing them for full public access.

I was teaching remotely at the time, a full class of 4th graders. And while they were eagerly supportive of the trip, planning for a substitute to enter my google classroom was also an adventure. Nothing worth it is easy. So our goals and our journey were so worth it!

Meghan and I set out on the 12 hour drive to Indianapolis, where we met this beautiful, crazy girl. (Our blog from January 2021 has every step in great detail.)

Ella – in the hotel with us. January 2021

Our lives were literally never the same. Ella passed her public access test and proved to be a champion car passenger as we drove the 12 hours back in a snowstorm together!

Ella went on to spend some time in Meghan’s public High School, whenever it was open that crazy spring, with the solid help of the team at Borough Hall and the awesome administration at Curtis HS.

She headed off with her to Misericordia University where they were on the swim team for two years, although Meghan covered the swimming end of that deal. Ella lived with Meghan in the dorms for a few years, and in off campus housing for one, until they finally settled into their own place in the summer of 2024.

College Facetime

She made a few trips to Disney with us.

Ella became an extension of Meghan. Those college years that were supposed to be so carefree, held challenges we could not have seen coming and left her father and I so thankful for Ella. The vascular tumor that had been festering just up the leg from the AVM in her knee that had repeatedly assaulted her childhood, was making a valiant go at her. It grew up against her sciatic nerve and left her in unspeakable pain.

Medication didn’t help. Sclerotherapy didn’t help. Cryoablation took some of the bulk away for a bit- but it didn’t hold.

Ella held her together. Ella gave her a reason to get out of bed.

Ella sat by her side in the summer of 2024 when she had the most traumatizing surgery I could have ever imagined to remove 2 square inches of muscle, and that tumor, from her thigh.

Ella never left her side a mere 7 months later when a series of faulty scans forced her into facing her 91% lifetime breast cancer risk with a double mastectomy at the age of 21.

And Ella was by her side a few months later when she graduated with a 3.8 GPA right on time.

And despite being a little more gray in the whiskers than when she started, Ella remained kind of a “Big Deal.”

The advice that she should likely retire from service work came after an emergency vet visit in April of 2025. She was suffering with some back pain and 10 hour days were getting to be too much. It was not easy at all for Meghan or Ella, yet we spent some time making the transition as fun as we could this summer.

I took Ella to some classes this summer, and met up with Janet, a most remarkable trainer. Ella and I figured out how to work together, and we have been brainstorming ways to keep this brilliant girl busy.

In addition to quality time with her brothers, Ella has become a certified therapy dog, and will begin working this month. We will figure out a slow and steady schedule that suits us both. Her vest will look a little different, and her tasks will have changed, but the goal is still the same. Ella will be making humans lives better, one pet, snuggle, and goofy trick at a time.

This is a story of second chances. This is a story about a shelter dog who became a Service Dog that graduated High School and College, and went on to become a Therapy Dog. This is a story about what happens when we give second chances and look at what someone has to offer instead of judging or dismissing them as “less than.” This is a story of humanity and what we can do for each other when we SEE each other, past the labels that have been slapped on us.

I shudder to wonder what would have been if someone didn’t pluck Ella out of the shelter and believe in her.

It’s why our family is so connected to shelter animals. Our hearts need second chances too.

Maybe that’s the lesson we all need.

#beatingcowdens

Difficult to talk to…

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That was the assessment of my sister-in-law, some time in 2004. She told me I was difficult to talk to, and I had no idea how to speak to children. There was a longer story than that, obviously, but her words were in my head today. It’s funny how certain things can stick around for decades. I’m not sure we’ve had a conversation of any length since then.

But, in fairness I don’t speak to too many people. Not because I don’t want to. In fact most of the time I would love to share a (caffeinated) beverage with any number of people. But, I don’t talk too much anymore.

I’ve kind of run out of things to say.

Pop music? Sports? Movies? Actors/ Actresses? Fashion? Influencers? I’ve got nothing. All out. I have NO IDEA.

Politics? I’ve got things that most people don’t want to hear. So that’s out too because I lack the energy to debate morality. And, well, as a chronically ill woman, who has held down a career, and not stunk at it for 29 years, and the mom of a chronically ill woman, who is well on her way to a career in healthcare, I lack the patience or desire to hold my tongue on certain things.

I’ve noticed there are people in life primed for a crisis. They love to help and jump all in until something is fixed. Those are amazing people. We knew a lot of them. We sometimes ARE them. They come in full force in a difficult situation, and then they wait for the issue to resolve so they can move on. They are wired for acute situations. Chronic medical drama requires a set of wiring most people don’t have.

What happens when the crisis rolls into another? What of the tests that have more tests to follow, and scanxiety that leads to procedures and surgeries where we then wait for biopsy results? What happens when multiple body systems get involved at the same time and prevention and survival crash into each other?

Unfixable situations make people uncomfortable. They want to lob well meaning suggestions about “not worrying so much,” or “is all that really necessary?” They want to pretend it’s not happening. They avoid basic questions because the answers make them uncomfortable. They avoid learning more about our rare disease because it is pretty intense.

My 50s have brought me to a place where I have tired of making reality softer to make other people feel better.

We’re not head in the sand people. We are face it head on, be healthy and strong for as long as God fills our lungs with air and of people. And that has meant some chronic string of medical insanity.

PTEN can’t be fixed. It’s a broken gene. It permeates every cell in the body. It is with us forever, with all of its tests, and scans, and tumors, and surgeries, and all the subsequent PTSD from too many hospital stays; and too many incompetent, insensitive, and often uneducated medical professionals.

They decorate the hospitals. For the seasons. I guess it makes sense. But, it always seems kind of odd while we’re there. The decorations help mark time on the calendar and keep us aware of what’s happening in the rest of the world.

I will stand by the fact that I wish they would provide my greatest need – caffeine in a bottle for the coffee averse among us. I cannot commit to a can. If you’ve been in a recovery room, you felt that on some level. I just want a bottle that I can close back up and return to as needed while pretending I care about my Facebook feed or the random game of solitaire I play.

We tend to mark time in pre surgical selfies and waiting room photos. To each their own I guess.

On December 16th we were in a “pre-surgical” room where I recognized the photo on the wall from a stay in 2017. It was 3 penguins. I distinctly remember because it reminded me of our family. That’s a whole new level of weird. And it’s not exactly table conversation.

Every time I think we will get a breath, it gets more intense not less. and I retreat. Into a shell. In my house. Where the act of going outside and pretending I understand a culture that I have not been part of for well over 2 decades is simply too much.

I got invited to dinner yesterday. It was a sincere invitation to a celebration. I couldn’t get out of my own way. The anxiety swallowed me whole.

I promise I’m not wickedly self-absorbed. I actually am a pretty good listener. I am decent at looking involved at tables where I have nothing to contribute.

I’ve become more empathetic as I age.

I know people around me suffer challenges and crises all the time. I sometimes feel guilty taking my own time to deal with the things heavy on my heart. My Grandma was quick to remind me “it could be worse.” She wasn’t wrong.

But, just because it could be worse, doesn’t mean that something doesn’t suck. And just because it sucks doesn’t mean that you get to lie around and freak out. Or hide in your bed and whine for too long.

Because we only get one go round on this earth. And the only way out – is through.

Wishing you health in 2026. Because little matters more.

We remain…

#beatingcowdens

What if?

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What if we all tried to really take a minute and put ourselves in the shoes of someone less fortunate? Not to beat ourselves up, but to build each other up. Imagine how different things would be.

Nothing kills the buzz in a room like the chronically ill. And, like any subgroup of people, there are the self-absorbed attention seekers among us. But, most of us, when we go through the difficult times, are able to offer the world desperately needed kindness.

Some days the fact that compassion fatigue has become normal hurts my heart.

What if it we normalized our own struggles while also acknowledging the struggles of others?

What if we held each other up instead of cutting each other down?

What if we showed compassion and human decency without any expectation of what we would get in return?

What if we all decided to “pay it forward” and speak and act with kindness?

What if the “golden rule” my Grandma referred to over and over was common practice?

I’m guessing the world would be better, softer, and more comfortable for all of us.

I’m getting older. My circle is getting smaller, and my heart is getting softer. I am grateful for all of those things.

Rare disease has beaten this body for over 5 decades. The storms have been relentless. And I am still here. My heart has been broken, and I have cried rivers of tears, but I am still here. Through those dark days I was never abandoned and never truly alone.

What if we focused more on giving others that sense of peace and love?

Maybe we should take lessons from these three? They are all different breeds, with different strengths, adopted and brought together in love. They treat each other like siblings in every way.

#beatingcowdens

Finding Strength in Struggles: A Mother-Daughter Story #beatingcowdens

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They never go away. Your experiences, that is. Our lives are literally made of them. And in all of our lives, some are happy, some are sad, others are joyful, or sometimes traumatic. We can’t change them. The glue that holds us together is how we deal with them.

After I crested 50 I became more introspective. I guess the decades between 2003 and 2023 saw most of my existence in survival mode. I would look at my friends with multiple children and think, “that must be so hard.” And I am sure it was. In a moment I can be full of empathy for anyone in any situation. What I never realized, or thought about, or spent too much time on was that our life was a daily challenge to survive as well.

Comparison is a devil’s tool in my opinion. So, I try my best to leave it alone. And in reality it doesn’t matter how you see someone else’s life or how they see yours. Social media is an illusion, and even this blog is often carefully worded to step over the darkest parts.

I only know my own life. And as my girl has grown, I have more time to reflect, and make changes as I need to. I am learning to give myself grace, to focus on my strengths and to set limits. I get tired. And allowing myself to feel that sometimes is a big step.

However, life is about balance. And negative speak drives me wild. I’m not one who likes to say things that are untrue, but I push to find the best in anything. Sometimes I fail. Mostly I succeed. Always, I try.

I spent decades holding myself together with superglue. And it gave me perspective and gratitude that allow me to be alone with myself a great deal, and still have peace.

We only get one go round on this earth, we might as well make the best of it. This earth is far from all I have, and I live with joyful anticipation of heaven, whenever God sees fit to take me from here. But, while I am here…

I am full of gratitude for my husband of 25 years. He is often the unspoken hero in our Cowden Syndrome tale. He has done more behind the scenes work to keep us afloat than anyone besides me knows, and he prefers it that way. The fact that we not only love each other after this many years, but we also still LIKE each other, well, that is everything. We share goals and hopes and dreams. And we share our love and respect for our feisty young woman.

I am grateful for survival. I am not sure why I was fortunate enough that my breast cancer was caught so early that I required no treatment beyond my surgery. But, in this pink washed month I am reminded of those who were not so fortunate. I am reminded of the wonders of modern medicine. I never forget the doctor who diagnosed our PTEN mutation, and the urgency with which he spoke to me, telling me of the cancer risks that “peak right around 40.” I am thankful that my daughter’s breast changes were found at such an early age, and that her screenings began when they did. I am amazed at her strength as she chose to get in front of her virtually inevitable breast cancer risk.

I have a hard time fitting in in groups. It’s not because I don’t like people. It is because a lifetime of a complex medical history, a daughter with a complex medical history and a rare disease diagnosis left little time for hobbies. I cannot relate to people too easily. My girl’s youth was definitely not “typical” of today’s world, and truthfully I don’t fully understand a lot of this world. It’s not necessarily a better/ worse situation as much as it is a very different existence.

Medical trauma is real. That I know for sure. I am exhausted. I am forever changed. But, I’m not mad about it. It just is. Like I said before, you get one go round on this earth. You get one body to work with. You do the best you can with the one you have. If you know you know, but if you don’t that’s actually better for you. It makes me happy, albeit confused, when I have to remember that there are people my own age that have never had, a single surgery, an MRI, a CT scan, etc. It doesn’t mean their life was easy. But, it does mean perhaps that we use a different brand of superglue to keep ourselves together.

Meghan calls me from her Physician Associate program in PA often. We talk several times a day and text throughout. Maybe that’s a mother/ daughter thing, but I don’t think so. I think it’s a friendship that has been forged by a similar life philosophy and work ethic. I think it is a product of our shared experiences, and the desire to make the best out of the lives we have. I know she makes me better. A better mom, a better teacher, and a generally better human. I think I do the same for her.

For a while I wondered if it wasn’t good for her to be this close to me. Now I know that’s nonsense. I think we all seek people who “get” us, and situations where we can be real. It’s not a place where any of us can live 24/7. We have to survive in the real world, meeting people from a vast variety of experiences where they are. But, I like being her landing spot, a place she always knows is ready for her, and a place where she is secure enough to be herself.

I am unapologetically proud of my daughter. My heart bursts when she explains how she works to do better, and to be better. She fully understands that we all are a work in progress, and she actively focuses on understanding her own strengths and weaknesses. She is a realist. She is honest. She is driven. She is tenacious. She never quits. She tucks and rolls through adversity like it is her job. (And, well, maybe it has been.) She is compassionate in a way that blows my mind.

She is so compassionate that at one of the most vulnerable junctures in her life, she parted with her own superglue, her service dog Ella, so that Ella could have a better life. Ella and she grew up together in college. Ella sat through classes, and exams, and up and down moments in Meghan’s day to day life. And, when things weren’t quite right with Ella and her overall well-being, my girl put HER girl first. Ella is retired now, living comfortably with us and her two furry brothers. Meghan soldiers on without her bestie by her side. She is forming her own superglue from within the cells of her rare and spectacular self.

The three furry siblings on the way home from visiting Meghan.

Recently we took Ella for a “Retirement” photo shoot. Natalie https://natalielicinicreative.com captured the love these two have for each other in a most magical way.

Photo Credit https://www.facebook.com/NatalieLiciniCreative
Photo Credit https://www.facebook.com/NatalieLiciniCreative
Photo Credit https://www.facebook.com/NatalieLiciniCreative
Photo Credit https://www.facebook.com/NatalieLiciniCreative

If you’ve read this far, thank you. I started this blog over 10 years ago to chronicle our journey. And I have not reread a single post. I have worked so hard pressing forward, and sharing our story in the event it could help someone else, that there has been no time to look back. In truth, there’s not point. We’re not going that way anyway. So from wherever the 285K plus hits on this blog have come, thank you.

In fact, as I reflect, blogging has kept me sane. Putting my thoughts together helps cleanse my crowded head and focus myself on the important things. And I think, being able to focus on what matters, is in fact my own superglue.

#beatingcowdens

“It Doesn’t Suck”

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“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first week of PA School.

“Thank you…” How many 21 year olds lead with that? Nothing to eat or drink. Half asleep. Headed to ANOTHER procedure which would require ANOTHER IV into a vein literally EXHAUSTED from overuse.

She spent a few minutes telling me about her Friday night out with her new classmates before falling asleep. “It doesn’t suck.” This was absolute music to my ears.

Anyone who doesn’t know Meghan, and hasn’t followed her story, and even some who think they know her, but haven’t really been paying attention, might think that describing her first week of classes as a graduate student by saying “It doesn’t suck,” is negative, pessimistic, or a bad attitude. But to me, who has been paying the closest attention, knowing the reality that virtually every school experience has “sucked,” this was music to my ears.

No point in going backwards to the countless times when she was belittled, ostracized, tormented, and tortured. She was never perfect, and she never claimed to be. But years of therapy have taught her not to shrink herself down to fit into anyone else’s box. I don’t know why many kids found her unlikeable. But she knew it. Always. And the ones who didn’t mind her were typically too afraid to speak up. “It doesn’t suck…” cautious optimism. I’ll take it!

I had 5 hours in the roundtrip between home and her school to reflect on this kid. And I have to tell you, I’m so proud of her sometimes I feel like I could burst.

Don’t get me wrong. The years of social isolation have been daunting and exhausting. But, they have given her wisdom and patience well beyond her years. She has gained confidence. She is insightful. She is capable of telling you her weaknesses right alongside her strengths. She is transparent, and straightforward. You never doubt where you stand. She is passionate, loyal and driven. She is resilient.

Writing has been hard for me these last few years. I feel like we mark time in between surgeries, rehab, appointments, tests, and more surgery. I have withdrawn from almost every relationship I have because most people seem exhausted by our chronic cycle and I have grown weary of apologizing for our reality.

Meghan’s tumor in her right thigh took up most of her high school and college years. ’19, ’22, ’23, and with the ultimate torture in the summer of ’24, she became a regular at PT during the years when kids her age were debating which party was better. A mere six months after the worst surgery by far, our New Year’s Eve was spent at NYU in recovery from her bilateral mastectomy. Which, in case you wanted a reference, she said was so much easier than the leg surgery. Well, pain wise anyway… but, I digress.

We are living inside of 2 PTEN mutated bodies with all the trials and tribulations that come with them. My own scans continue. Battles with insurance and radiology alike are the rule, not the exception. In the last 6 months two of our primary providers left their practices and the job of “training” a new doctor begins again.

Pride. Focus. Determination. Dedication.

Meghan and Ella graduated from Misericordia in May. Then, the difficult decision was made that retirement was in Ella’s best interest. Selflessly she put her best friend and closest companion ahead of herself. Again.

Ella is slowly transitioning to retired life with her “brothers.”

She left in early June, a year after that leg surgery that still has me traumatized. She walked away from me with her passport in hand, and traveled 2,500 miles to meet the one friend she will keep forever from her undergrad. They met in Vancouver and they had a 2 week adventure that included activities she had never even dreamed of being able to accomplish. She paid her own way with gifts carefully saved through her entire life. She is a traveler in her soul. This was the first of many journeys that passport will see.

We squeezed in a ton of appointments at the end of June, including beginning to “train” our new endocrinologist. One of the appointments was a pelvic ultrasound. She has had them frequently since her “endometrial hyperplasia” in 2015. And when the report popped into her chart that Friday afternoon – we knew it was going to need follow up.

Her gynecologist is just an utterly superb woman, who trusted me with her cell phone number at our first visit. I texted her and alerted her. She found the report, and we were scheduled to see her July 3rd. Classes started July 7th. Because.. why not?

Her biopsy was Saturday. I stayed with her until the IV was placed and we met up again in recovery. It is a dance so familiar to us that in and of itself it’s unsettling.

We don’t have results yet. But I am tired of waiting. I’m tired of waiting for the next thing to be finished before continuing our story.

This is an ongoing saga. PTEN mutations do not get “fixed.” We may find some lulls along the way, but waiting is so much a part of this life.

Meghan took this at a butterfly exhibit in NYC with her dad, on her grandfather’s camera. I thought the busted wing on this blue beauty was epic.

Meghan walked out of the procedure, stopped, looked me in the eye, and thanked me. Again. I told her to stop, and she said no. “I’m so happy I didn’t miss Friday night, because of that uncomfortable Saturday.”

Maybe that’s the lesson. Don’t miss Friday because Saturday holds a daunting reality.

Two 300 mile round trips in 18 hours. She didn’t skip a beat and was right on time for classes today where she belongs.

Here’s to hoping “It doesn’t suck” continues to transition…

#beatingcowdens

It Was “Ruff…” / Graduation and PTEN Awareness May 2025

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Meghan’s faithful service dog, Ella taking a post- graduation rest.

You’d think at 51 years old, I’d be in better control of my emotions. I mean, you’d think I’d at least have them labeled and organized. For all intents and purposes nothing is “new” here. We are formally 14 years into our Cowden’s journey, at least 14 years since our diagnosis of this mutation that permeates every cell in both of our bodies, and has done so since our births.

I think I have slowed down, and almost stopped writing, because I no longer know where to start. Literally decades have begun to blur together with the same pattern in an ugly loop.

“Don’t let it define you…” well meaning platitudes echo in my ear. And yet, Cowden Syndrome is at the very core of every action, every decision, every step we make. A genetic disorder is forever. We’ve lost friends and family over this reality. There will always be a medical challenge coexisting with whatever stage of life we are at. It just is.

Yet somehow, if we do not do our best to make others feel comfortable with our reality they back away. The “elephant in the room” is a metaphor we reference regularly. Cowden Syndrome needs to exist in every relationship we have. The acknowledgment that it is there and real, and never leaving is essential. And yet, once that is in place, we are more than happy talking and sharing and being part of literally everything else.

I’m told I am “intimidating.” Funny the power that words can have. That one rattles me. I don’t feel intimidating. What I am doing is surviving. I am navigating a wild ride we never asked to be on. I am organizing bills, and appointments and scheduling surgeries. While that is happening I am staying on top of my game at work, because I need my job, and I never know what crisis lurks around a corner.

What my girl is doing is enduring… with honors. “Gratitude, Grace and GRIT,” we sometimes call it.

You’ll meet your people in middle school… NOPE.

You’ll meet your people in high school… well maybe it could’ve been… but, Covid.

You’ll meet your people in college… well, maybe one or two keepers, but largely, no.

At her graduation on May 10th, we laughed, cried, hugged and ran the full gamut of emotions. She graduated Magna Cum Laude with a BS in Health Sciences. We, her mom and dad, beamed with pride. Her loyal service dog Ella was in some combination of attentiveness and exhaustion.

At some point there were tears, from both of us. Her, forever introspective, and me, wanting to fix it all. At one point she declared she felt as though she “survived” college, like it was some reality television show. But, there were many truths to her words.

She was accepted on a full, 4 year academic scholarship in 2021. She came entered as a swimmer in August of 2021 after a fragmented Covid swim year at home. She entered on new meds for a tumor in her right hamstring that had seen an embolization at the end of 2019 and was coming back at her – hard. That tumor nestled between the femur and the sciatic nerve was not to be beaten by the Lyrica that teased her with relief and beat her body with countless side effects.

In the summer after her freshman year, in May of 2022 there was another cryoablation to shrink this beast in her right thigh. This thing, initially measuring well over 5cm kept her nerves on fire, and the pain untouchable. She rehabbed in PT that summer and came back for her sophomore year.

During that year she dealt with drama in so many places I lost count. New relationships were not easy. It’s difficult to worry about teenage things when you are planning your next surgery, trying to ensure your transcript suits you for physician assistant school, and working daily in a fight with your body. Chronic, grueling, nerve pain isn’t exactly locker room talk. The classes were intense. The swimming schedule was rigorous and she did it all and ended that year, her last year as a swimmer, with a medal at championships.

That year also brought a past due formal diagnosis of ADHD. Not a shock, especially given the PTEN connection, but something I had with her on for a lot of years. Now, in the absence of me, my very capable kid knew what she needed, and got the diagnosis to check a necessary box. Little changed, but she was stepping into a role of self advocacy. I was sad it was necessary, and yet so proud.

The following summer, in 2023 she had another cryoablation. She was done not being able to sit, or stand, or walk, or move, or stay still without pain. Another swipe at this lingering tumor in her right leg. If they could get it off her nerve, maybe she could get some relief… There was work this summer, and PT, and pain, and the exhaustion of recovery. Again.

By the end of her junior year she had had it with the pain, and the orthopedic surgeon agreed finally to remove this beast from her leg. We spent the first week in June in the hospital- Meghan, me and Ella, with a few visits from her dad. The tumor was gone – as was a huge chunk of the muscle in her leg – all needed to clear the margins from the residue left from this tumor. In all my years and in all her well over 20 surgeries, I have never witnessed anything like that post operative pain. The amount of medication she needed, the assistance necessary just to move her… it was grueling. And isolating in the most epic ways.

That was the summer she completed all of her applications to Physician Assistant programs. Always on the ball, she kept her eye on the prize and got them all out – on time.

She spent her junior summer recovering, again. PT x3 days a week and a hybrid class to gain her certification as an EMT. She pulled through both and left us in August to begin her senior year. In a “grown up” apartment, off campus, just her and Ella. The doctor told her it would be 6-12 months before she felt like herself again, but even enduring the 3-6 month phase during the fall semester was progress over the pain she had been in. This one seemed to have finally given her some relief.

So we thought maybe she could catch a break. Until 2 breast lumps became 7 and the talk of a prophylactic double mastectomy to get in front of her 91% breast cancer risk got real – and fast. The surgery was scheduled for 12/31/24 – New Year’s Eve. She stayed with us through early February and then headed back up to school to knock off a few nonsense classes before her degree could be conferred.

That spring brought her the ability to decide to stay at Misericordia and begin her studies in their PA program in July of 2025.

So as we ran the gamut of emotions that graduation day – you can imagine that they were probably not too similar to those of her peers. She “survived” college indeed. “Survived” on a full scholarship and ended with a 3.85 GPA through some of the most ambitious electives I’ve ever seen.

“Don’t let it define you…”

I disagree. Let it define you. Let it make you stronger. Let it make you more determined. Let it make you less tolerant of BS and meanness. Let it make you full of compassion and kindness and all the things you have felt missing in the world.

When you have an all-consuming genetic disorder the notion that it won’t define you set’s you up for failure in my opinion. This diagnosis changed everything. It changed us.

May is PTEN Awareness month. I am lacking in my publicity of this. If our angle, our view is unorthodox and gives you trouble, please know we’re ok with that. This is not a one size fits all syndrome.

But for us, PTEN Awareness means also being AWARE. Being aware of ourselves, and our Cowden siblings across the globe.

We all face vastly different challenges. We all carry hope together as a beacon of light into the world.

We are pretty in touch with reality over here. We are acutely aware of the struggles of others in the world. We believe in sharing, supporting, and showing up. Pull up a chair for our “elephant” and let it have a seat in the room. We will gladly make a space for yours.

Then maybe we can all get about the business of loving on each other…

#beatingcowdens

#PTENAwareness

Perfectly Imperfect- Orchids and Life Lessons

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I don’t remember when I got the first orchid. I don’t remember who gave it to me or even what color it was. I remember it was after looking through droves of flower photos from my father’s images after he passed away in December of 2013.

Dad loved to take pictures. And he saw things in ways other people didn’t. For better or worse depending on your perspective. My relationship with him took many different forms during the 4 decades we shared this earth. Truthfully for most of the first 3 decades he wasn’t part of my life really at all. That last decade though, where lots of things got sorted out, well, that decade was pretty magical and I am forever grateful for it.

It wasn’t long after the orchid landed in my front window that it became evident the window was meant for these plants. It thrived, and held onto its bloom for months. I was captivated.

Not being too easy to buy gifts for, the next year or so was filled with new orchids, as I fumbled my way though learning how to best help them grow.

I poked around the internet to get tips on how to grow orchids. These people were intense. Installing lights to keep the leaves straight, creating a drainage system, tracking the growth of specific flowers.

I was out. There could be nothing in my life meant to remind me of beauty that took so much work.

I was officially winging it.

I felt more comfortable immediately.

I was at the time the mom of a recently diagnosed tween with a rare disease that I also shared. We were learning and figuring and trying to stay afloat. I was trying to learn my new body after my bilateral mastectomy and the shove into menopause from my full hysterectomy in 2012. My grandparents were suddenly aging. My relationship with my church was falling apart. I kept smiling, and telling everyone we had it all under control. But we didn’t. I was winging my whole life.

Somehow though I was interested enough in the orchids to keep them alive and happy. They became a hobby, and a reminder that there is beauty in everything if we know how to look. My orchids helped me with perspective.

They helped me appreciate the beauty of creation. They helped me when I was alone after a foot injury in 2019 and when the world turned upside down with the pandemic in 2020.

I came to spend a lot of time looking out the front window, fussing with leaves and stems, and just admiring the tenacity of these beautiful plants. I think the fact that I just let them be and grow their own way has been the most important lesson of all.

But, there are countless other things these plants have taught me.

This one was supposed to be dead from “root rot.” Plants don’t survive once the rot hits the main root. Someone forgot to tell the plant. After a few years of nurturing it bloomed this month. Patience. Determination. Don’t give up. Trust your instincts.

And this one, such beautiful flowers. And if you only glance at it that is all you will see.

But it is struggling. Its leaves show signs of distress. I tried repotting it. I tried leaving it alone. Some days I just stand by this one and wonder what it’s going through. By being present and attentive, I’m hoping one day I will be able to give it the support it needs. We may look like we have it all together on the outside, but it may be taking everything we have to produce that smile. Look at each other. See people. Really see them. And don’t give up when they are struggling. Keep showing up. You may be the thing keeping them going.

And this one… it looks different than the others because despite my best efforts, it grows at an angle. It bothered me for a brief minute and I tried to correct it. Then I noticed the rich sticky sap on its stem. This is a happy plant. It doesn’t care about looking like the others. It had strong roots and is thriving. This one inspires me to be more like it. Even though it has no flowers right now, it makes me smile every day. Put your best self out into the world and that may be enough to bring joy to someone who needs it.

If you look closely here you will see that there are two plants in this pot. One has long since finished blooming, it looked nothing like the other. One is holding onto its purple flowers for quite some time. Two totally different plants in exactly the same pot. Two different potting mediums shoved together, and yet both are thriving. They figured out a way to do more than coexist. They figured out a way that, despite their differences they could both have what they need. Imagine if we took more time to care for those close to us, with different needs, instead of choking them out because we need the pot all for ourselves?

One plant – two spikes. From the same root they grew on their own, yet they’re able to have their independent spikes without hurting each other. So much we can learn.

This one has the longest spike. I have no idea what its flowers will look like, but I will be there to celebrate alongside it when it is finished with its climb.

Once a week, usually on a Sunday morning while I listen to www.churchunleashedtv.com I bring them all from the front window into the kitchen. Most are watered just by soaking them. (I use mostly bark as a potting medium.) When they are soaking I often stop to listen and I can hear them, happily absorbing the water into their roots. I hear them, and I am grateful for the ability to care for them. I am grateful for the reminder to listen. Really listen, so that I can truly hear.

And I peak down at this little guy that has been through a lot. I am not sure what its future holds, but know that both of us have tried out best. And watching its little roots nourished by the water gives my soul some peace.

Any orchid die hards would probably wince at the state of some of these plants. But, I have learned that they are perfect just the way they are and I have worked to meet them where they are, and accept them where they are. Whenever I can, I give them what they need to thrive or to just survive. They are perfectly imperfect, and immersed in the grace so freely given to me. Most days it’s hard to tell who needs who. I’ve grown quite attached to these little life lessons, delivered in the form of beautiful flowers.

I’m getting older. I am tried. I am less social. I am sad a great deal. I do not know how to fix the unsettled feelings in my heart.

My body is beat up from 5 decades of PTEN life. My heart hurts from the 2 decades my daughter has endured. This life is hard. People tire of hearing that but it is hard. It is with you 24/7 and it Iiterally lives in every cell of your body.

The cycle of surgery, recovery, scan, is endless.

Most days I try my best to focus on something that keeps peace in my soul.

Some days that is harder than others. But, every day we remain…

#beatingcowdens

Rare Disease Day 2025

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This is technically our 14th “Rare Disease Day,” since our PTEN diagnoses came in the fall of 2011, but if I am fair, the entirety of 2012 was such a blur that I feel like this is more like the 13th year we were consciously aware that “Rare Disease Day” is annually celebrated on the last day in February.

If you search the files of this blog you will find that in 2014 we did some Rare Disease outreach at my school, and in February of 2015, 2016 and 2017 we held successful fundraisers for the PTEN foundation that supports our own rare disease PTEN Hamartoma Tumor Syndrome, or Cowden Syndrome as it is often called.

We ran one more fundraiser in October of 2018. Then we stopped hosting.

It was not for lack of desire. But, rather for the difficulty that came with filling the room. Rare Diseases, if you are lucky, (yes, read that again) are also chronic. And people have lives and experiences and other things to tend to besides annual events for what was going to be a fact of our lives.

And, truth be told at an average of one or more surgeries each year, things got tricky to manage on our end too.

“Let us know if we can help,” became a most cringeworthy phrase as I retreated into a deep hole of survival, fight or flight, and often downright depression. How could I pick up a phone if I sometimes struggled to pick up my head? And could I expect people to keep showing up when the story was the same? The times in between surgeries were sometimes even worse. The anticipation of an appointment. The worry about the next scan. I often didn’t want to hear me speak.

Tumor, surgery, pain, isolation, therapy, recovery. All heavy. All the time.

It’s been over 6 years since that last fundraiser. I sometimes feel guilty. Then I force myself to feel proud of what we were able to do when we could.

More times than not this journey has felt like climbing one of those rock walls. Except a real one. Where hanging on was literally for dear life, and the harness was hard to find.

This last year has tested Meghan and I, and Felix as well. It has tested relationships in all of our lives. Her surgery in June of 2024, well documented here was by far the one that was the most traumatic for me. If I close my eyes at just the wrong time I can still hear her screaming during the longest hospital stay in over a decade. The physical pain has been hers to manage, and she does so in ways that consistently blow me away. The emotional pain, of watching your child suffer… that one is a special kind of hell. If you know, you know. And if you don’t, I will never wish it on you.

The double mastectomy, just barely 2 months ago, was well documented as a necessary move on that 9 page pathology report. PTEN patients have a 91% lifetime occurrence of breast cancer, and my PTEN kiddo was able to couple that risk with 2 first degree relatives, her grandmother at 48, and her mother at 38. My daughter is a smart, focused, brave, and driven woman. This one is a different kind of recovery, one where the physical pain is less but the emotional upheaval of adjusting to your new body at the age of 21 is very real. Scars take time to go down. Things take time to settle. But, waiting in and of itself can be torture.

Ours is just one PTEN story, of the 1 in 200,000 people across the globe diagnosed with a PTEN mutation and the effects of the mutation in each body run a wide gamut. Rare diseases are generally underserved because studying us is time consuming. Massive cuts are a reality and we are not a priority. The PTEN family lost our brightest advocate Dr. Charis Eng in August of 2024 and all of the PTEN foundations across the globe despite obstacles, continue to press on with urgency, in her honor and for the betterment of us all.

Ours is just one rare disease story. You know people with rare diseases. You may even be one of them. I have learned more about rare diseases since our diagnoses. I know the names of syndromes, and most importantly the people behind the stories.

This year on Rare Disease Day, when we are asked to #ShowYourStripes, tell your story. And, if you don’t have a story to tell, reach out and let someone tell theirs.

Alone we are rare. Together we are 300 MILLION strong. And we matter.

#beatingcowdens

Red Flags and Butterflies

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It’s really a dizzying vacillation between the two. So much time is spent at the red flag, laser focused, all hands on deck stage, that when there is a pause to give some time to breathe, and maybe look for the butterflies, I am the most lost. Sometimes the pause is hours, sometimes days. Occasionally it is weeks to months but rarely longer. And just about the time I start to notice the butterflies, we are tripping over red flags again.

This is life with Cowden Syndrome. This is probably life with many chronic and/ or rare diseases.

Meghan went back to college 8 days ago. She is adjusting, despite some need to still heal physically, and emotionally, she is pressing on as she always does, now mere weeks from her Bachelor’s Degree and the start of her Physician Assistant program.

We talk every day. And I love that. It doesn’t matter who calls who, or who texts who. It just feels natural to be in contact. I am here to listen when her anxiety is high, and when she is celebrating her successes. And she does a lot of the same for me.

We are interconnected in a way many can’t (or won’t try to) understand, at this time in life where we are both hoping to find and establish ourselves in the next phases of our lives. I am a few years out from retirement and she is ready to prepare for career of promise as a Physician Assistant.

I laugh with her on the good days, and I cry with her on the not so good days.

Many years ago when she was months old and slept poorly, our pediatrician once told me I should leave her to “cry it out.” I fired him. For us, this is the better way.

Anxiety is my biggest burden to carry these days. I try to tame it, but I often fail. I label it. I call it out for the useless freeloader that it is, but it is not ready to leave me. Not yet. I think that comes along with this rare disease thing too.

Fight or flight. Lather. Rinse. Repeat.

If I do not stay diligent we miss something. If I do not listen to my daughter, we miss something. If I do not stay up on the screenings we miss something. If I do not stay attentive to my own PTEN body as it ages, I miss something. Anxiety is my constant companion these days.

I cry. I laugh. I scream and yell. I feel all the feelings. And there are SO MANY.

I think that is how I survive, and how I remain helpful. I don’t think I have the luxury of keeping my head in the sand or ignoring the realities. We have a lot of work to do to stay at least reasonably healthy.

Being a PTEN patient can feel scary. This world can feel even scarier.

One day I will figure out what I will do with my the time in between the red flags. As I get to spend more time with the butterflies, I will figure it out… and I am looking forward to it.

Today though, I will check in on my college girl one more time, forever grateful for her strength and fortitude. I will pray for peace, and guidance for how best to live as a patient, as an advocate, and as a Christian in this crazy world.

Paying attention is exhausting, then again, so is…

...beatingcowdens