The Glider- from Birth to Bilateral Mastectomies

Published on January 1, 2025January 1, 2025 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

Tuck and Roll

Published on June 6, 2024June 6, 2024 by beatingcowdens2 Comments

Somewhere in the middle of Tuesday night when they were pulling blood pressures like 68/37 I started to adjust my head that we were not headed home Wednesday. I had hoped, planned and packed for Wednesday, but it was to be another “tuck and roll” kind of experience.

Overnight Tuesday was a different world from Monday. It was not because the pain was gone by any means, but because the pain care team here worked until they got her to a place where she could rest. You can’t heal if you can’t rest.

The problem with all these meds is many tend to lower blood pressure. Her’s runs low anyway. Those two things combined together to create a bunch of nervous PCAs, a whole lot of “redo” action by the nursing staff, and a bunch of pages to ortho and pain management. The good thing is she slept through most of that.

Over the last few days we have pieced together where a lot of the ancillary pain is coming from. Monday’s surgery was over 3 hours and had to be done with her face down. The bruising thought her chest area is extensive, and the numbness on the front of her legs can be attributed to this. Those things are likely to fade away well before the leg.

The leg though…

This surgery, although we knew it might be coming, kind of snuck up on both of us the week after Meghan arrived home from the semester.

This leg, and especially this tumor had been causing her grief since 2019. At the time she asked the orthopedic surgeon, who has been a regular part of her team since 2016, for an MRI of her upper leg. He agreed because anyone who knows Meghan more then 5 minutes understands that she knows her body, and something there was giving her grief.

When the scan was reviewed and the doctor started to brace us for an unusual finding, I remember Meghan saying, something to the effect of ‘Thank God you see it.’ As she showed him with her finger exactly where this beast was buried in her thigh. He was impressed that she was so on point as he verified with the MRI images, but not surprised. She was grateful for the validation that she was feeling a real “thing.”

The next few years we tried everything to get at this beast. First we tried ignoring it. Then we scanned. Then it grew. We asked about removal and were cautioned that it would be akin to “filleting” her thigh through a huge open incision. That was definitely not choice one.

By the summer of 2021 as she was preparing to leave for college, she had reached a place where this precariously placed tumor (in between the femur and the sciatic nerve) could no longer be ignored. We got a hematologist with an interest in vascular malformations to see her virtually the week she was leaving. She headed off to college with a script for lyrica. We tried to go slowly but relief wasn’t coming easily. Still, she did her best to do the things college students do, for better or for worse.

She is the epitome of, ‘Those who say it can’t be done should move over for the people getting it done.’

That year was for studying and for swimming and for trying to titrate a dose of this drug. It would likely not have mattered if it was a magic bullet (it was not) the side effects were just too much and by 2022 it was ditched and there was s new plan and a new interventional radiologist.

In 2022 and in 2023 – he worked to shrink this beast with cryoablation.

It shrunk the tumor a solid amount- by more than half.

But the pain. It has proliferated every aspect of her day to day existence. It is hard to know – until you know. Chronic pain changes you. This beast got in the way of anything that required too much moving, sitting, or just about anything else. It’s hard to be 20. It’s harder when you are trying to relate to people who don’t need pain meds just to exist. It’s like you’re side by side with them speaking two totally different languages. At some point you either learn the other language or move on. Very few people are fluent in pain.

This transition Meghan and I are working on, where I am trying to transition her into primary responsibility for her care, it is a delicate one. This year was difficult for Meghan for so many reasons, but the reason swallowing her up was the pain. I knew the call would come, and it did.

She called and asked me to schedule and MRI – just to see what was happening. She was stating that another cryoablation was not the path she would go, but she reached out to her interventional radiologist to try to troubleshoot the images. From his lens the tumor was markedly smaller, decreased by almost 2/3 from its original 4.5cm. He could not figure out why her pain was so much worse. He called and spoke with the orthopedic surgeon.

We got word that we should head to ortho to review his thoughts on the most recent images. We were expecting advil 800. He led with – Let’s get it out of there.

Tuck. And. Roll.

When it was almost 5cm he dared not touch it. Now at its current size he thought he could get it. One of the smartest men we will ever meet stared at her MRI images and described the constant pain caused by the location of this ugly beast. HE said to her, all the things SHE has been saying. He said that is in a terrible spot, between the femur and the nerve. He spoke of his access to nerve monitoring technology to ensure the motor nerves were not damaged. HE said she won’t feel relief until it’s gone and cryoablation took us as far as it could. I swallowed hard.

I knew at some point she’d need to let him try. Too many things stood to get BETTER if she got THROUGH to the other side. The surgery now on a markedly smaller tumor was going to require a smaller incision and made it seem attainable.

And before I knew it the surgery date of June 3rd was set.

The only way out is through.

So here we are. Night 3 in the hospital. Another additional dose (on top of her heavy regimen) just got administered as the pain started to creep out of control again.

She needs to move before she can go home. She knows. She needs to move because it is just better for you. She know this too. And she will, but she can’t yet.

There is no frame of reference for this surgery. It’s nothing typical. There is nothing to base the experience on. Just Meghan. We have to let her body lead.

Occupational Therapy got us through a wardrobe change and a move to the chair in the room.It was a 20 minute session of activity. The muscle spasms on the back end of that, would have been enough to make me want to stay still forever.

But tomorrow she will move again. Residents and rounds and PT and OT will visit. The pain care team will come too. What I’m almost certain will not come are our discharge papers. And that is ok. As much as I am desperate to leave, I can not take her home too soon. There are times in our lives where we have to tuck and roll. These times are no strangers to us.

On Monday the surgeon dug in, literally to the bone and extracted two inches of muscle along with this tumor beast.The hope is that once this very ugly painful time passes, that maybe the tumor pain, and the chronic sciatica, and all the other ugly after effects of this beast will go too.

But,not today. And not tomorrow. I am trying my hardest to trust the process….

I am working on managing expectations. My goal is to find a sweet spot in this parent recliner…

The last of the dilaudin is in. That is my clue to close my eyes….

#beatingcowdens

Desperate times…

Published on October 10, 2019 by beatingcowdens4 Comments

I took the knee scooter to the mall.

I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.

The screen on his iPhone had cracked and he needed to go to Apple. I needed an outing worse than a puppy who has been crated too long.

He dropped me off at the door. He rode the scooter through the parking lot to meet me. Apparently, like so many other things, its a LOT more fun when you don’t need it.

I laughed in spite of myself at the sight of it. I was also glad our teenager had decided to stay home. The sight of it all would have likely been just too much.

People stare right at you, while simultaneously judging you as you drive this thing. The local mall lacks the tolerance of Disney World. In fairness, from face on, it looks like you’re using wheels for fun. It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.

Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.

I have had more surgeries in my life than I can count. Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.

Double Mastectomy – back at work in 5 weeks.

Hysterectomy – back in 2 weeks.

I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.

Vascular, over the February break…

Biopsies, a day tops…

We always say recovery pain is the best kind, because you know it’s going away.

And yet the answer to “Does your foot feel better?” still remains “Not really.”

My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery. I’m sitting. Foot up, phone in hand, waiting to try to schedule.

I rode that knee scooter all over the mall. I rode it into the grocery store too. Quite simply, I’m tired of being locked in my house. It is truly a ridiculous and ingenious contraption.

If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”

Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”

I had a boatload of things I wasn’t going to do as a parent. I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…

Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc. And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.

A great deal of my pride was left behind in the OR where she was delivered.

I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.

The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.

And there are few things quite as humbling as a breast MRI of your silicone implants.

I was never “in fashion” but I used to take great care in what I wore. Things were dry cleaned. Stockings and heels were worn daily.

Then there was back pain that seemed only better in sneakers. Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers. May be a dig at my early judgment of “too casual” teachers…

Life, at it again…

If we are open, and able to be introspective, we are changing and growing all the time.

I am in a painstakingly slow process of relinquishing control.

Control is really largely an illusion anyway.

Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.

I’m a work in progress.

So if you see me and my knee scooter, be kind. You may even see me up and down the block. These are, after all, desperate times…

We’re done being caged up. I need some fall air. I am ready to get well. Since my foot isn’t cooperating, I’ll start with my mind.

#beatingcowdens

Experience Dictates Your Reality

Published on January 20, 2019 by beatingcowdensLeave a comment

I usually have a plan when I sit down to write. Typically there is a topic, or a concept in my mind or on my heart. But, as is clearly evident by the two months of silence on this page, I’m struggling.

Having a PTEN Mutation, and being the mom of a young lady with a PTEN Mutation of her own has been nothing short of life-changing. Things that happen in our lives change the course of our travel along the path. That statement is not even intended as a judgment, just a factual statement that most people can relate to.

Sometimes when we are talking in the car, my girl and I play the game of “what if?” It can be a dangerous game, or it can be cathartic. For us it is typically the latter. No matter how many ways we can come up with that things “would have” or “could have” happened, we are always sure that we have become who we are because of the turns our road has taken. And, on most days, we like ourselves.

Experience does dictate your reality, though.

Two or three people observing the same thing will interpret it to some extent based on the experiences that have brought them to this point in their lives. That is neither a bad thing or a good one. It simply is. And to understand each other as humans, it is something we need to recognize.

One of Meghan’s Christmas gifts was a T shirt that says “Humankind- be both”

It was chosen for her deliberately because it is something she believes and aspires to. being in a high school experience where she meets many young adults from a variety of life circumstances, she is developing an even deeper understanding of the situations in our lives that create who we are. She is happy there. She is accepted there. Life stories are understood, and often unspoken.

Where we have been, what we have seen, and what we do with those experiences are such an integral part of our lives. Many of them we can control consciously and fully, while others take a lot more work to harness. The hardest things to get control of lie deep in our own hearts and heads.

The day after Christmas we made the gut-wrenching decision to put down our Lucky girl, a lab/ border collie mix that had been a part of our family since Christmas in 2005. There was sparsely a memory Meghan had that did not include Lucky. And the absence of the clicking of her paws and her animated noises leave our house a way too quiet.

We have our beautiful April, a mutt rescued very quickly after our beloved Allie passed away in December of 2014. Lucky needed April to distract her from her own broken heart. And she did an outstanding job. April is finding herself now, as an “only” while we all navigate through a new phase of life with one dog.

If you have lost a pet you understand the gravity of the loss and how it changes the dynamic of the family. If you have not, you’ll have to trust me. Or not. It’s up to you.

Three of us, well four if you count April, are grieving Lucky’s loss. Yet, we are all doing it differently. Lucky lived here, but she was Meghan’s dog. She came in to our lives when Meghan was only 2. Experiences were different for all of us, yet the depth of the loss runs deep.

Experience and personal reality are intimately connected.

Almost two weeks ago I fell at work. Hard. It was so frustratingly avoidable. I caught my foot on a child’s chair. My brain and my feet were not communicating. There was nothing to break my fall except my shoulder as it hit the base of another chair.

I stayed on the floor for a few moments trying to recover. Looking up at the faces of 30 third graders gasping “Are you OK?” I knew it was essential that I at least look the part rather quickly. I got myself to my feet, mumbled an independent assignment for them and got to the phone to get some help.

After completing paperwork and gathering some ice, I was sent out to seek medical attention. After spending a few hours having x-rays of a foot, two knees and a shoulder, I was sent home to ice and rest. I was also told to contact my plastic surgeon.

No it was not a disfiguring fall, except part of what broke the fall was also the right breast implant. The one just under the still slightly off-color shoulder. It felt very “off” and it was impossible to ascertain whether the fall had somehow caused the implant to rupture. I needed an MRI.

I could not get any associate of my surgeon to physically see me. The fall was on a Tuesday, and my doctor ONLY sees patients on Monday. So I was left to schedule the MRI and wonder.

The looming appointment was not nearly as bothersome as the wonder.

People fall every day. Depending on age, physical fitness, the circumstances of the fall, they will all have a different reaction. If you have a PTEN Mutation, which led to a breast cancer diagnosis and a double mastectomy at the age of 38, and that double mastectomy was followed by silicone implants, which already had to be replaced in 2016, and you fall on and near one of the implants from a height of about 5 foot 7, well your reaction might very well be to worry about that implant. Mine was.

I just wanted someone to look at it. I wanted someone to tell me the visible changes were not to be worried about. But, no one would do that. So I was left alone, home healing, with full access to the internet.

DANGER.

While I have learned a good deal of what I know about my body and Meghan’s through skillful sorting through ‘fake’ and ‘real’ information, equally available on the internet, I now had plenty of time to investigate what had been a mention weeks earlier in one of my on-line support groups.

Breast implant associated anaplastic large cell lymphoma, or (BIA-ALCL) is something I never heard of until it was brought up in discussion by another patient with Cowden’s Syndrome. I now had all the time in the world to fully investigate and I was getting furious. While I do not put my faith fully in any source, I will link in FDA pages here. A careful eye will notice that most links when searching this condition are plastic surgeon sponsored.

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm239995.htm

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm064106.htm

For those of you interested, clicking the links above is likely to give you information you never heard before. Unless maybe your surgeon was much more forthcoming than mine.

I was relieved to learn I had the “smooth” textured implants, the ones least likely to lead to BIA-ALCL. I was disturbed to read the FDA recommendation the implants be evaluated via MRI 3 years after initial surgery and every 2 years after. No one had ever mentioned an MRI to me post mastectomy. Ever. But that shouldn’t be a surprise. A complete search of all my paperwork from the initial implant surgery and the revision failed to uncover ANY documentation of ANY potential additional cancer risk. Being diagnosed with a condition that had greatly increased my likelihood of so many cancers, I may have thought things through differently. Maybe I would not have. But regardless I would have felt as though I had made informed decisions.

Now I was just mad, hurt, and violated.

And, I was dealing with a trauma to the area surrounding this foreign object in my body, causing visible swelling, with no one to calm my angst.

By the time I got the call post-MRI that there was no rupture, I also read the report that said basically nothing other than the stability of the implant was evaluated. A wordy disclaimer.

Risk of BIA-ALCL is rare. There is no documentation as to whether our subgroup is any more affected.

It doesn’t matter anymore. I will at some point in the not so distant future move to have these objects removed. “Superfluous tissue” is what my mom called her breasts 22 years ago when they were removed. She never had implants. She’ll be 70 next month and is feisty as a firecracker.

I think I found my motivation to stay thin and spry.

Our experiences influence our reality. All this from an unfortunate fall. Even as I sit here almost 2 weeks later, the pain in my foot telling me I’m not sure there is not an un- diagnosed fracture there, I have to wonder if that fall was that unfortunate after all.

I decided finally on a primary care practice. I stopped looking for one who knew or cared to know anything about Cowden’s Syndrome. Instead I found one capable of screening me for the things any 45 year old needs to be screened for. I think I may finally be at peace with that decision. I had “well-visit” bloodwork Saturday, and I will have my visit with the staff’s FNP on Wednesday. I will talk to her about my basic asthma and allergy medications, as well as the script I usually hold for occasional migraines. I suspect all that will go well.

Then I will talk to her about the fluid in my right ear. The fluid that has been there for at least 5 months. An ear ache in early September brought me to urgent care. That repeated 3 more times, in October, November and December. Each time there was an antibiotic. Once there was a referral to a sub-par ENT who have me a steroid. Sometimes the fluid leaks out of my ear while I sleep. Sometimes I swear its finding it’s way out of my eyes.

My mother has terrible sinus problems. She has since she’s been my age. It’s probably rotten genetics not PTEN related. Mucinex keeps me away from infection and eliminates the pressure for 4 or 5 hours at a time. But this many months of Mucinex has a tendency to make the spleen angry. And I don’t want to get sidetracked talking about those splenic lymphangiomas.

I want an MRI of the sinuses. I want to know nothing sinister is going on. Then I want to see the ENT who did the surgery to save my voice 2 years ago. I’m hoping we can get that process started on Wednesday.

The calendar is foreboding. We are heading into a doctor cycle – both of us. And while I am grateful for the lull, I get familiar feelings of anxiety and dread as I lock the long afternoons in traffic into the calendar.

My daughter has the formal diagnosis of Post Traumatic Stress Disorder secondary to medical trauma. There are people who like to pass judgment on that. I wish they wouldn’t.

Her service dog will come eventually. People will have a lot to say then too. I won’t notice because I will be exuding gratitude at all times.

Everyone you meet is fighting a battle you know nothing about. Be kind always.

The struggle is real.

Experience dictates your reality.

The trick is to realize while everyone leads a different life, that reality is the same for all.

Humankind – be both.

#beatingcowdens

(Living) “In Prep for the Climb” – PTEN Awareness Day 10/23/18

Published on October 21, 2018October 22, 2018 by beatingcowdensLeave a comment

I’m aware of Breast Cancer. As a survivor now of 6 years and the daughter of a 21 year survivor, I am aware as I dry from my shower facing my mastectomy scars every morning, that breast cancer is reality. As my Facebook feed and my memory are both too full of those we have lost and those who still face this disease, we are aware. What I wonder, is how much help is the awareness? It is a topic that could be debated forever, but I’ll change gears first.

Something else I am very aware of is the PTEN gene located on chromosome 10q23, and the perils its associated mutations can cause. So when the PTEN Foundation let us know that 10/23 was designated PTEN Awareness Day, we were all in.

This blog has, for years been designated to the ups and downs of this mother- daughter duo dealing with Cowden’s Syndrome, the diagnosis we both received in late 2011 after a PTEN mutation was first diagnosed in Meghan, and weeks later in me.

The few years following were an absolute whirlwind of appointments, scans, screenings and surgeries. We worked to keep our heads above water and just exist. We considered keeping my job, and maintaining honors status in her school quite the accomplishment.

We were told things over and over, like “don’t let it define you…”

I’ve got some news for you. You can only walk so far into the fire without retaining the scars.

True awareness of PTEN for us comes with comprehension of the gravity that you have to remain in a vigilant stance of preparation, awaiting attack from your own body at all times. PTEN patients have ridiculous cancer risks pretty much all throughout, and the VIGILANCE required to stay ahead is utterly grueling.

We are faced with choices to keep the most high risk organs, or remove them prophylactic ally. We are asked to play the odds. With our bodies. All the time.

With Meghan the AVM (Arteriovenous Malformation) in her right knee, though quiet now, has caused damage she will deal with forever. She is 15. God willing she will walk on those legs another 80 years, each day aware of the pain, and of the symmetry removed from her body forever.

When you have to be vigilant, you have to plan. There are trades. You have to decide if you’ll miss school with friends and fall behind in classes or give up the breaks designed to recharge you.

There are no breaks. February – months away has 3/5 of its break and 2 other days devoted to appointments. Martin Luther King Jr. Day in January. Yep – that one too. Don’t worry, the brain MRI is scheduled for April break….

You have to pick and choose. And the decisions are hard. You want to give it all to everything, but HOURS of your world are wasted in bumper to bumper traffic, waiting for the hopeful news that you have another 6 months before you come back. And if, in fact you don’t get that news the schedule is tossed and it’s game on for scans, analysis and biopsies.

The pain. No one can really tell us yet from why, but it seems to exist throughout. The fatigue. Maybe the thyroid issues, maybe some immunological stuff. Maybe some connection yet to be determined. But it’s real.

It’s as real as the number of times we had to decline invitations before most people stopped asking.

We’re not blowing you off. We’re holding it together – by a shoestring.

Chronic Illness is hard to live, and we get that it’s difficult to watch. But, it’s real. And short of a cure, it will never “run it’s course.” It will not BE us, but it will be PART of us – FOREVER.

“You don’t look sick…”

“You don’t look anxious…”

No, as a matter of fact she looks strong and determined. She’s been practicing for quite some time.

Sometimes I have to bite my tongue to keep from replying, “You don’t LOOK ignorant either – but at least you can fix that if you WANT to…”

Our rare disease journey has opened our eyes to not only PTEN disorders, but “Lhermitte-Duclos disease,” “Nail-Patella Syndrome,” “Lynch Syndrome,” “Spinal Muscular Atrophy,” “Muscular Dystrophy,” “Neimann- Pic Disease,” ” Neurofibromatosis,” “Acute Myeloid Leukemia” to name just the very tip of the iceberg. I am more aware than every that everyone struggles.

I’m also a big fan of real pure awareness, for the sake of learning something about other humans I share the planet with.

One of the humans I share my home with has grown up in a totally different direction courtesy of this disease. And while I am grateful for her diagnosis, as it surely saved my own life, I am sad that she has had to see so much, and manage so much already in her life.

So today, on 10/23, if you’re not living with it yourself, direct yourself to http://www.PTENFoundation.org, or the PTEN Facebook Page and learn an little more about PTEN.

My own girl is working every day to make herself better, physically, mentally and emotionally. When I have down days, or I just don’t feel well, she reminds me to forgive myself. “You have it too Mom.” Indeed I do, and it’s quite a ride…

“Prep for the Climb” Disney’s Hollywood Studios

Together we prepare for the climb each day – and seek out that ‘One Perfect Moment’

For as much as this disease has taken, I am grateful that she is starting to take back control, and is finding her voice as an advocate for herself and others. (And I love listening to her sing too…)

#Beatingcowdens

Bring It On the Musical – One Perfect Moment Lyrics

2012 Broadway
Bring It On the Musical – One Perfect Moment LyricsI’m not freaking out, I’m really okay
I’m totally chill or I will be someday
‘Cause I’m so near the top but there’s so many mountains to climb
There are plans to be planned, drills to be drilled
‘Cause this dream that I’ve dreamed is becoming fulfilled
And I plan to enjoy it but right now, I don’t have the timeFade in on Campbell, an average teenager almost grown
Close-up on average grades from the average life she’s known
Now zoom in the lens on the rest of her friends as she stay alone
Doing the work, getting it right

‘Cause I know we’ll have to be practically perfect
So I’ll go above and beyond and pull through, this I can do
All that I’m asking is one perfect moment in time

I’m seventeen, there are so many things that I can’t control
If I start to freak, or feel weak, I focus on just one goal
Turn down the panic, attack this routine like it owns my soul
Turn up the music so loud that it swallows us whole
And then there we are, we burn like a star
We’re safe inside the world we know
Then suddenly I’m in prep for the climb and here I go
High in the air, there is a moment just before you start to fall
Live in that one moment

I know that if I can just stick the landing
Then I’ll know that somehow my life will be fine
And I’ll go through the rest of my life understanding
What it feels like to shine
The future’s full of mysteries
So please let this be mine
My one perfect moment in time

Forever…

Published on July 20, 2018July 20, 2018 by beatingcowdensLeave a comment

When I married my husband I committed to forever. It was a good call.

When we decided to have a child, we understood she would be our baby forever. No regrets.

But some time in the fall of 2011 a doctor diagnosed both of us with a rare genetic disorder. This forever, well, this one we did NOT sign up for.

At first there was no time to process the concept of forever as it connected to Cowden’s Syndrome. There was too much to do.

Neither of us had an “easy” medical history, so putting a name on it had its pros and cons. But, we were handed lists of appointments to make and things that suddenly needed immediate attention. We were quickly schooled on tumor growth and cancer risks. We were told to remain vigilant, and that we would be “fine”.

There was no time to process as 2012 had a traumatic thyroid biopsy in January and an embolization for her Arteriovenous Malformation (AVM) in her knee in February. Then, there was my double mastectomy and my “surprise” cancer diagnosis in March, followed too closely by my hysterectomy in May. And soon after that hysterectomy, Meghan had breast, pelvic and kidney and bladder sonograms. There was also another MRI of the knee, and two thyroid ultrasounds that brought in 2013 with a surgical thyroid biopsy.

2012 was salvaged largely by a third grade teacher who I swear was an angel placed in our path. Because there was real life too. There was work, and school, and activities, and appointments that were quickly starting to overwhelm.

There was probably close to 2 years after the initial diagnosis before I even looked up. And, when I did I had a whole host of emotions.

Forever had taken quite a toll on my girl. Tough as nails. Driven. Strong. Focused. Always. But, apprehensive, concerned and full of worry she was way too young to have to shoulder.

Forever. I did my best to keep as much “normal” as I could. Early therapists cautioned not to let the disease “define” us. I kept the schedule delicately balanced between the necessary medical screenings and the “fun” activities. She needed to be “like everyone else”. So there was swim, later theater, some voice lessons, all interspersed with surgeries too many to recount again. Some traumatizing, some annoying, some isolating, and some worrisome. All time-consuming. Some required physical rehabilitation, and others emotional.

Forever. The highway became our bonding place. She could read and do some homework in the car. We scheduled appointments on holidays as often as we could. We scheduled appointments after school. It made for some long days- often traveling 2 hours each way, and waiting forever in the offices- but we did it to preserve school attendance, and to keep her at as many activities as we could.

Forever. She grew up. Not just physically, but mentally. She has broad shoulders, literally from hours of butterfly, and metaphorically from carrying way more than she should at her age. The knowledge that this is her forever is difficult for all of us. We make the best of it. We talk about how grateful we are to know what to look for. But, that gratitude, while sincere, can never replace the innocence of youth. Innocence lost. Forever.

Forever. The wait time at most appointments is close to forever. No one typically knows what to say to us. They look at what they need to. They offer some empathy, sometimes. Then, sometimes out loud, and sometimes in their heads, they show gratitude that they are not fully responsible for us. We wait hours and hours so often. We have learned patience. We have learned to quietly accept that if they “google” us before, it means they actually care. We are rare. We are 1 in 200,000. This diagnosis is forever.

This summer we have already gone to our 16th appointment between us. There are 4 more just next week.

Yet, this summer she performed with a wonderful, talented, warm and welcoming group of young people at Staten Island Children’s Theater Inc. in a production of “Legally Blonde Jr.” They like her. Some of them know what she does with the rest of her life, and others don’t, and it’s all okay there. They give me hope that some people, teenage people and adults as well, are just good people.

She has been at swim practice most mornings between 6:15 and 8:15. She has spent this week in small group lessons for swim from 8:30-3.

She has accomplished a good deal of her summer work for school. She had peppered in the appointments in the crevices hidden in the schedule.

Forever. The reality is not lost. But, I am so proud. So proud of how hard she works to stay in this world, while living in the world of chronic pain and rare disease. It is hard work. She does it pretty gracefully most days.

Forever. Perhaps I could use a lesson or two from her.

Somewhere in the midst of this medical whirlwind we live. Somewhere in the midst of working full-time, and managing surgeries and appointments, and life as it happens to all of us, I have lost track of myself.

Forever. I have one speed. I operate in constant motion, or I am asleep. There is rarely any middle. The yellow legal pad is to the right of my computer, capturing every thought. The iPhone calendar alerts me to the plans of the day. My house, although not as clean as I’d like it, is in constantly good order. It is a control issue. I will own it. There is so much flashing by in the blink of an eye, I can be sure to get the dog fur off the floor once a day, and know that it actually got done.

Forever. I’ve lost touch with most of my friends. Life is busy, theirs and ours. There are only so many times you can tell the same story to people. Our story could be recorded. It just repeats itself. Doctor, testing, surgery, follow-up, rehabilitation, next body part, routine appointment, maintenance, worry about a potential problem, 6 months to watch it… I used to have other things to talk about. Now I would be one of those people I used to laugh at on night-time TV. I am so out of touch with the world. My experiences are significant, but without variety. They are heavy and too much for most people to hear. There are no answers.

Forever. The summer will pass. We will force in a vacation and we will hold those days to be without doctors, and without summer assignments. Then, we will do our best to put our feet in sand once. Just to listen to the water. We will try to get a few people to swim in our pool, so the activities of opening and closing it are not totally futile.

Forever. Life is busy. Too busy. And that’s not just a Cowden’s Syndrome thing. I heard of three deaths this week. All three tragic. One at age 19, one at 31, and another a bit older. Tragedy. They had plans. They did not think their forever was going to end this week.

Forever. My conscious mind doesn’t need but a split second to list dozens of real and significant blessings. There are countless things in my life that bring me to my knees in gratitude. But, the inner conflict is strong. With the knowledge of the wonder and beauty in my life, I should be able to take this diagnosis, this “Forever” that is Cowden’s Syndrome, and put it in its place.

Forever. The struggle is real.

Forever. Stopping to find the moment, and to embrace the joy right now is not as easy as it sounds. I can talk the talk better than anyone. The raw truth is that I can not always walk the walk.

Our Cowden’s sisters and brothers span the globe. Estimates are about 1,800 of us are in the United States. I do not know the world numbers. I know some of the people though. One in Australia just underwent 2 MORE brain surgeries a few weeks ago. Another, a teen who is with her Mom in Cleveland right now is waiting for news that is surely churning mom’s heart.

Forever. It’s such an arbitrary concept sometimes. I became a wife with the intent of forever in my heart. I became a mother with that same intention. But Cowden’s Syndrome threw forever at us. It’s got the same dictionary definition, but not the same feel.

Someone asked me recently why I can’t just take time off, or block my appointments so we have “breaks”. The truth is, I try. Doctors want what they want in terms of follow-up, and being vigilant means I need to comply. Most visits run us a minimum of 4 hours round trip. Many can not be “stacked”. I have a full-time job. I have a high school honor student. We need to be at work and school. I suspect those who ask are just trying to help. But, it makes me feel like maybe if I just tried harder…

Forever.

It took me 7 weeks to write this post. My attention span is not what it used to be. I have a whole lot of reasons to keep making this work. Forever. I am blessed. I am grateful. I am tired. I am human.

This blog was started in hopes that people stumbling upon it would read the story of a real family, fighting the same thing they are. With that comes real, raw, and honest emotion.

Forever is beautiful when you connect it to things you signed up for.

Forever is not so easy when it connects to a rare disease that wants to grow things throughout your body.

Forever. It is promised to none of us, that forever will last longer than today. It is our decision what we do with the gift of the time we have.

I am a work in progress. I am a wife. I am a mother. I am a survivor. I am worth the hard work.

Today I will start by opening all the blinds. Time to look at the sunshine. Time to look at the blue sky and the flowers. Time to breathe. In and out.

One step at a time.

We will remain

#beatingcowdens

Forever.

Superfluous Tissue

Published on March 4, 2018March 4, 2018 by beatingcowdens3 Comments

6 years ago I was trembling with fear. I sat up most of the night. I paced the floors. I was scared out of my mind.

No stranger to surgery, this one was way different.

Sometimes I actually forget things. But, most of the time, especially when it has to do with numbers or dates, I remember.

Six years ago I was only months past the diagnoses of Cowden’s Syndrome Meghan and I had received. Six years ago I was only learning about the mutated gene with astronomical cancer risks that I had passed unknowingly to my girl. Six years ago I was reeling with the knowledge that she had nodules on her thyroid, pronounced and alarming. I was trying to grasp the reality that this life of medical drama that I had hoped would subside, was going to require our vigilance and attention forever.

So, exactly 6 years ago tonight I was contemplating the overwhelming reality that my newfound breast cancer risk, which exceeded 85% on gene mutation alone, had been coupled with my 8 prior breast biopsies, and my mother’s “survivor” status, and had relegated my surgeon to tell me it was not “if,” but “when” breast cancer would strike me. When I met her for the first time a few weeks prior she had my chart with her. She had reviewed it before our consultation, and she cut right to the chase.

“When are we going to schedule your surgery?”

I paused, a little stunned and confused.

“For what?” I managed to ask.

“Prophylactic bilateral mastectomy.” She stated simply. “You will face breast cancer. The numbers, and your history make it irrefutable. I think we need to get there first.”

I always travel to my doctors alone, but that is probably one of the few times I actually regretted it. The room started to spin a bit. Thankfully, she didn’t skip a beat.

I managed to ask, “when?”

She said, “March 5th.”

I protested. I asked if we could do it over the summer. “I am a school teacher,” I told her.

She was kind, but unimpressed. “March 5th. My scheduler will help you coordinate with the plastic surgeon. We will be in the operating room together.”

I was numb. I called my husband, then my mother.

I drove home, and started to prepare.

I was unsure how I would handle the minimum 5 week recovery. There were no sick days left for me to pull from. I had an 8-year-old who had already had multiple surgeries, and I had quite a few myself. I started to wonder how to plan financially for a leave that would end up being at least partially unpaid.

A dear friend, who will never fully grasp the depth of the gift she gave, donated 25 sick days to me. The weight she lifted off me was astronomical.

I spent the next few weeks in auto pilot. We were still handling some new findings on Meghan, and I was reading and processing Cowden Syndrome. It made me nauseous.

I remember the drive into the city that morning. I remember walking with Felix. I remember praying over the phone with my brother-in-law.

I remember repeating over and over to the unbelieving doctors that I would NOT be having tissue expanders, the common course of action with a mastectomy. The plastic surgeon heard my concerns, and my need to simplify, and to get home without additional surgery. The knowledge that my child would likely one day walk this road filled me with a sense of urgency to make it seem as simple as possible. She agreed to do immediate implants. I lost count of the number of times I explained that.

I remember walking to the operating room, and looking into the comforting eyes of my surgeon before I fell asleep. “You are very brave.” And even though she never really gave me a choice, her reassuring smile helped so much.

I remember waking up feeling relieved and empowered. Not just because the surgery was over, but also because I had gotten out in front.

I remember seeing my husband, and checking on Meg. I remember seeing my sister and telling her she should be with my nephew. His birthday happens to be the same day.

I was discharged the next morning – about 28 hours after the surgery.

The next days were painful, and draining. My mom was with me for a few, to wash my hair, and to chat. I hated the circumstances but treasured the time with her.

After my mom’s mastectomy following her cancer diagnosis many years prior, she had dubbed the breasts “superfluous tissue.” I finally understood.

When my pathology came back days later with early grade DCIS, essentially one cm of stage 1 breast cancer, I missed my breasts even less. We were all surprised, and I was grateful for the knowledge that the cancer was not close to the chest wall and no follow-up treatment would be needed. I just had to heal.

I had no idea at the time that two months later I’d be back in the hospital for a hysterectomy. Cowden’s Syndrome does not mess around.

Except, it messed with the wrong family.

We get knocked down, but we get up stronger.

Sometimes I hate that I remember dates. Other times, maybe it gives me reason to celebrate, and to feel empowered.

I started owning my nutrition 6 years ago. I have worked on playing strong and fit. My weight has been stable, and I am proud to be one of the healthiest looking sick people you’ll ever meet.

“superfluous tissue” indeed.

#beatingcowdens

Rare Disease Day 2018

Published on February 27, 2018February 27, 2018 by beatingcowdens2 Comments

I took today off from work.

Sadly, it was not to enjoy the almost 60 degree February day.

Today was doctor day.

And as I traveled two hours for the 17 mile trip into Manhattan this morning, I had plenty of time to think about World Rare Disease Day, tomorrow, February 28th.

Rare Disease Day 2018 will pass for us unlike the last few. In recent years my family, spearheaded by my daughter, has held a sizable fundraiser to draw attention to Rare Disease Day. Our goal was always to raise awareness and funds to support research and treatment of our Rare Disease through the PTEN Hamartoma Tumor Syndrome Foundation. My girl needed some time off to address some things on her mind and heart. I gave her that time. She is still working hard, but she has already expressed an interest to join me in planning an event in October of 2018. Stay tuned.

While I was driving, I thought a lot about RARE. It has so many connotations.

Sometimes I think of snowflakes, and rainbows, and unicorns. I think of pleasant, beautiful things. Some of the buildings on the skyline look rare. Rare can be a thing, a sight, an action or even a feeling.

Rare is defined by Dictionary.com as:

adjective, rarer, rarest.

1. coming or occurring far apart in time; unusual; uncommon:

a rare disease; His visits are rare occasions.

2. thinly distributed over an area; few and widely separated:

Lighthouses are rare on that part of the coast.

3. having the component parts not closely compacted together; not dense:

rare gases; light-headed from the rare mountain air.

4. unusually great:

a rare display of courage.

5. unusually excellent; admirable; fine:

She showed rare tact in inviting them.

Rare can mean remarkable, wonderful and exciting. It can mean fascinating, and intriguing.

But life with a Rare Disease reminds you often, that RARE can have many other connotations.

A quick look at thesaurus.com generated these synonyms to RARE:

Synonyms for rare

adj exceptional, infrequent

Quite a list, right? And, if you really look with an honest eye, not all of them have super positive connotations.

Strange, uncommon, unthinkable, unusual, deficient, flimsy, tenuous, (and no this isn’t a typo, but I had to look it up) unwonted…

These are not the words you’d use to describe a beautiful natural event, and probably not the words you’d pick for a dear friend.

Yet, these words also mean RARE.

I set out today to get screened by 3 of my many specialists. The cancer risks with a PTEN mutation are almost astronomical. It becomes a game of “when” not “if” in so many cases, and the vigilance required to seek out the cancers so they are detected early can be overwhelming. Lifetime risks for breast (approximately 85% as compared to 7%), thyroid approximately 30% to .9%), uterine (approximately 28% as compared to 1.7%), kidney(approximately 24% as compared to 0.8%) and melanoma (approximately 6% as compared to 1.1%) eclipse the general population. (These numbers were midline from a graph in this link) www.myriadpro.com/services/clinical-summaries/gene-pdf.php?gene=pten&allele…

The risk of recurrence is also great, and that of developing a second, primary site cancer is also noteworthy. So, having had a double mastectomy with a great prognosis, does not eliminate the need for biannual screening. I love my breast surgeon. She is one of the best. She and I are both always pleased when she can tell me everything is good.

But, I held onto her a little longer today. I told her I was in the market for an internist. I need someone to play “case manager.” I need someone to be my doctor. She paused and furrowed her brow a bit.

That isn’t an easy request, she told me. I said I just need someone willing to learn a little, and consider that I don’t fit in a “box.” I need someone who will partner with me. She told me she’d led me know if she thought of anyone.

I’m not hopeful.

I waited down the hall for the hematologist/oncologist. When she was an hour late, I walked the half mile (in jeans and compression stockings from Wednesday’s surgery) BACK to the main hospital to see my endocrine surgeon.

She may be the weakest link in my chain right now. She scanned the remains of my “lumpy, bumpy” half thyroid that the surgeon 25 years ago thought would be an asset to me. She scanned a very slowly growing lymph node in the area that went from .6mm to .8mm. She told me to get some blood drawn and that all looked good. I showed her a recent chem panel. She pointedly ignored every out of range number, and zeroed in on the calcium level. “Good.” And she handed me back the papers. Then she ordered a short-sighted list of thyroid labs that I would never tolerate for my daughter. I was out of her hair in 15 minutes.

I walked back to the cancer center thinking “rare” thoughts.

I waited again for the oncologist, who was as always pleasant and happy. She examined my spleen, and what she could feel of the 4 hamartomas that live there. She felt nothing out of the ordinary, and ordered my abdominal sonogram.

I showed her the same chem panel I showed the endocrinologist. She agreed the irregular labs should be repeated, but did not feel concerned. I asked her about an internist.

She froze. She suggested a new genetics person that had recently come to the hospital. I may go for a consult.

But, and internist? I asked again.

Hesitation. Almost painful look. She explained that the internists have to move fast. They don’t really have time to get to know a new condition. She couldn’t be sure if she new any that would care properly for me. She basically gave me 4 names, but told me I was best left to do it myself.

Even though my rational mind understands it to a degree, I felt like I’d been punched in the gut. I have homeowners insurance, auto insurance, and life insurance, just in case. I have a 401K and am part of a pension system. I do my best to prepare. And I was basically told, by a major NYC hospital, that I stood little chance of finding an internist who would take the time to manage my case.

That scares me. I do it. I always do it, and I will continue to do it. However, I am managing health care for myself and my teen. And it’s not just routine stuff. Cancer is looming, lurking, and mocking us. All I want is someone to check behind, proofread per se, and make sure I am checking all the right boxes. I want someone who will know that a test result in us may not mean what it does in someone else. I want someone who looks me in the eye and knows I am a human who plans to live a long time even though her body doesn’t play by the rules. I want a name to put on the line every time someone asks me for my “primary care” doctor, and I want that doctor to at least glance at every pertinent paper sent to them about my health.

I got my blood drawn at the hospital lab.

It’ll be in the online system long before anyone ever discusses it with me. I’ll scan it, and hope that there are no alarm bells to be sounded this time.

RARE isn’t just snowflakes and unicorns.

RARE is that kid, who everyone looks past. The one without the cool clothes, or the right hair. RARE is the one who no one wants at their lunch table, and the one who is conveniently forgotten on fun excursions. Because, what it RARE can’t do what everyone else can? And anyway, truth be told, RARE has cancelled one too many times. RARE doesn’t really fit in anywhere. RARE is brushed aside, in hopes they won’t bother anyone, or maybe they it go away. People are afraid of RARE. They perceive it as fragile, needing too much effort, or too hard to understand. Sometimes people even envy RARE, without thinking through the late nights, the terror, the medical strategies, the constant advocacy. RARE wants to fit in, but it never will.

RARE is too much new, and too scary for a doctor to own more than one piece.

We are scared of things we don’t understand.

Right now, RARE is a bit of a loner.

We are all RARE in some way.

But, RARE as a lifestyle is not an easy road. And it is not a choice.

The choice comes in what we make of it.

Rare Disease Day 2018 will be a little different this year for us, a little more quiet. But, I hope there is no doubt, that we will come back.

RARE does not give up. Ever.

#beatingcowdens

It’s Not Over Yet…

Published on May 29, 2017May 29, 2017 by beatingcowdens7 Comments

Tonight my search for perspective was harder than it normally is.

Tonight I needed a glass (or two) of wine, some time alone in my office, and plenty of music.

And as the lyrics roll through my head in the eclectic mess that spans, Contemporary Christian, Classic Rock, and some alternative memories from back in the day, I somehow start to find myself again.

I am generally a very positive person. I am able to find blessings in unlikely and hard to reach places. I make a point of focusing on these things for so many reasons. Primarily, I find it is necessary to be positive for my health. While I don’t believe a positive attitude alone will cure illness, I do firmly believe a negative one, or a constant state of stress and worry can worsen illness. We certainly don’t need that.

But, lately I’ve been frustrated. I’m even a little angry. You see – everything is NOT fine.

And I’ve been avoiding my computer because I’d rather write when my perspective is in its proper place. One of the reasons I love to blog is because I can get right in my head by the time I’m done. I can typically work through whatever is gnawing at me.

There are drafts in my folder. Unpublished, unfinished work. I’ve tried, but I’m struggling.

Logic leads me to retrace the obvious.

In our house the diagnoses came about five and a half years ago. I was 38 and Meghan was 8.

In most of the people I’ve interfaced with who have Cowden’s Syndrome, their diagnosis is less than 10 years old. I know there are others, but this is the majority.

There is a growing group of us who are parents. Now, in my case, my diagnosis was made BECAUSE of Meghan’s. But, in many cases the opposite is true. There comes a point where the signs are either apparent, or subtle, and something prompts the formal diagnosis of PTEN Hamartoma Tumor Syndrome, in some form, in our children.

Anecdotally, we are not the only house where the syndrome seems to manifest worse a generation down. This is a story I have heard many times.

There is a special kind of knot that forms in your stomach and lingers, forever, when you realize that you are somehow responsible, in an unintentional, yet undeniable way. Your child has this syndrome because, even with a current estimate of a 1 in 200,000 diagnosis it is an autosomal dominant condition, which means that if you have the mutated PTEN gene, 50% of the time, it will pass to your child.

Between us, since Meghan was born in 2003 there have been 30 or more trips to an operating room. On 18 of those visits I have watched my girl head into surgery.

And I know all the blessings bestowed upon us. I know the beauty of benign biopsies, and the gratitude of legs that allow for walking when the alternative has certainly been possible. I know the strength and resilience of my daughter, and the grace of God alone. I know the grit of a child just out of her 7th knee surgery who understands the recovery process better than any PA she will meet in the surgeon’s office. I know the feeling of bruises on my knees as I give thanks for my child who is ABLE to recover. I get it. I truly do. I’m grateful. I am.

But, you know what else? Sometimes I get angry. And, that’s OK too.

I’m learning that part of being able to be positive is allowing myself to FEEL and WORK THROUGH ALL the emotions that come my way. Even the ones that hurt. Even the ugly ones that don’t have flowers and rainbows attached.

This is reality. This is our reality. And I am not about comparisons. I do not profess to understand anyone else’s reality any more than I could expect them to understand mine. I do not use words like “worse” or “better” or “harder” or “easier” or “fair” or “unfair.”

What I can tell you about our reality is that 18 is too many surgeries for a 13-year-old girl.

I can also tell you there will be more. For both of us.

Vigilance, a necessary reality to keep us in front of the astronomical cancer risks associated with Cowden’s Syndrome will lead to more surgery. And we will hope and pray each is followed by a benign biopsy, or an encouraging word from an orthopedic surgeon trying to preserve a knee damaged by a mischievous AVM.

When I got my diagnosis, I was almost 40. I was married. I had a little girl. I had a home. A career.

When my girl received her diagnosis she was in 3rd grade.

Swallow that.

It doesn’t taste very good.

Cowden’s Syndrome is isolating. In addition to numerous food issues, and immunological issues, and significant knee trouble (understatement of the year,) there are SO MANY doctor’s appointments. There are countless blood draws. There are so many days I pick her up at school and we do ANOTHER 4-5 hours round trip in the car, traveling to NYC, sitting in traffic, parking, waiting, sitting in more traffic…

As connected as social media can help you be, there is a lack of connectedness that is inherent with not being there. Being absent. Being unable to go on certain trips. Being unable to do the things kids your age can do…

When I was a child I always “knew” something was wrong with the ridiculous number of surgeries I had, but it was different. It was not the same as knowing for sure that your genetic mutation was going to guide portions of your life whether you like it or not.

When you have one thing wrong, whether you break an arm, or have your wisdom teeth out, or your tonsils, people seem to know what to say. When you constantly have something wrong, some type of surgery, or some type of recovery on the agenda, it gets harder for everyone.

People don’t know what to say. So they don’t…

Cowden’s Syndrome can be very isolating.

What about our children? What about our children who are being diagnosed younger and younger? To some extent, yes, “Knowledge is Power,” but at what cost?

We are forced to make the logical choice for necessary screening appointments, and often surgery, while often having to skip social, cultural, or sporting events.

We are forced to say no to social engagements so often, that people forget to keep asking.

Our youngest children at diagnosis may not fully understand the scope of what is now their’s. But, they will. If they have a parent with the same syndrome they will watch. Everything. If they are the first in the family they will piece it together. Really there comes a point there is no keeping it from them. Then what?

I am blessed with a young lady who reads like a book-worm, and has a solid comprehension of people, personalities, and her environment. I am left only with the option to tell her the truth.

Sometimes the truth gets stuck in your throat, burns a bit, or leaves some nasty reflux. Yet, still that bitter pill is the only one we’ve got.

I sometimes wonder how different things could have been, if…

But it is my girl who stops me. Without this diagnosis she knows I would not be here. My breast cancer was uncovered by her diagnosis and that diagnosis undoubtedly saved my life. Without Cowden’s Syndrome she knows she would have become someone different. Someone else. And that wouldn’t have been right.

While I don’t believe in a God who wants us to suffer, I believe in one who uses that suffering to allow us to become a better version of ourselves.

My girl started Junior High with a broken foot. During her 3 years there she endured less than perfect social relationships (read, a few very mean children and my child who didn’t always have the patience to contend with teenage normalcy) and 7 surgeries. SEVEN. Seven recoveries, and pre and post operative visits too. She did that while holding an average of well over 95% every single marking period. She did that while making enormous strides as a competitive swimmer. She did that while learning that she had a the voice of a singer hiding inside. She did that while performing in several productions, practicing after school for months each year. She did that while spearheading 3 successful PTEN Fundraisers, essentially putting Cowden’s Syndrome in the vocabulary of our community. She’s ending Junior High on crutches. Unfortunate bookends, or a reminder of the strength and resilience of a young lady who refuses to be defined by her disease.

I am sometimes not even sure if she is aware of her accomplishments, as she is so busy pushing onward to stop and notice.

Who sets the example here?

I guess I need to stop hiding from my computer. Perspective never really leaves. Sometimes it just needs to be worked through.

This diagnosis stinks. This syndrome is a real bear to contend with. It is lonely and isolating and leaves little time to even see family, let alone friends. However, as the saying goes –

And that is probably the real perspective.

And almost as if perfectly timed, I found my title for this blog – as the Pandora radio plays..

“They are inside your head
You got a voice that says
You won’t get past this one
You won’t win your freedom

It’s like a constant war
And you want to settle that score
But you’re bruised and beaten
And you feel defeated

This goes out to the heaviest heart

Oh, to everyone who’s hit their limit
It’s not over yet
It’s not over yet
And even when you think you’re finished
It’s not over yet
It’s not over yet
Keep on fighting
Out of the dark
Into the light
It’s not over
Hope is rising
Never give in
Never give up
It’s not over…”

(It’s Not Over Yet – For King and Country)

#beatingcowdens

AHCA, High Risk Pools, and My Child’s Future

Published on May 4, 2017May 4, 2017 by beatingcowdens2 Comments

I am angry. I am hurt. I am worried.

I have stayed out of politics through the entire tumultuous 2016. I have serious issues with many politicians. I am not here to talk about them directly. I am here to talk about an issue that transcends political party affiliation. I will not engage in a debate about Democrats or Republicans, or the should have/ would have/ could have game that people like to play with each other.

This is far more serious, and more important than any of that. This is about my daughter. It is about her life. Her future. And, it is about the lives of millions of American citizens, myself included.

I will concede that there are problems with health care in America. I will even agree that healthcare the way it exists today needs change. However, when I look at a situation that needs change, I think it through carefully. I work through every detail. I weigh out repercussions and ramifications.

The Bill that passed the House today, in my opinion was put together in an attempt to score a “win” for our President.

When millions lose. No one wins. That’s not just the math teacher in me. That’s real.

Three years ago I was in a car accident. It was a terrible situation, and I was T-boned at an intersection. I will contend to my dying day that the truck that barreled through me was speeding so fast it never should have made it to me before I cleared the intersection. I had the stop. I stopped. He never saw me and it took almost a block, in a school zone, for his truck to finally stop moving. Because the stop sign was mine, I was assessed with most of the fault for the accident. It made me furious. I was told speeding could not be “proven” despite the absence of skid marks. The other 6 accidents that happened at that intersection in the months preceding were not helpful either. In the end, I was grateful for my life. I walked away and took the penalty on my insurance. I paid that accident penalty for three years. And, while it did not make me happy, I did it. The accident penalty was annoying, but affordable, less than $200 a year.

The car accident happened once. It might happen again, but it will not happen regularly. I am 25 years driving, with one accident and no moving violations. I have proven I am not a reckless driver. I have control over that. Full control, and I take my driving very seriously.

I also take health very seriously. Unfortunately, there are aspects of my health I do not have full control over. My daughter and I have a rare genetic disorder called Cowden’s Syndrome. She is 30 years my junior, and at 13 and 43 we have seen the inside of an operating room close to 45 times combined. Cowden’s syndrome causes tumor growth. It carries with it an astronomically high risk of many cancers, most notable breast, thyroid and uterus. It carries also significantly elevated risks of kidney, colon, skin, and other cancers. Many of our tumors are benign. Some are not. The only route we have to long term SURVIVAL is constant surveillance.

Many doctors recommend surgery to remove things that are high risk. Thankfully, that suggestion proved life-saving for me in 2012 when a “prophylactic” bilateral mastectomy revealed stage 1 breast cancer. I was fortunate.

Two months ago I had surgery to remove a benign tumor from my vocal cords. It was impairing my ability to breathe and speak.

In 16 days my daughter will undergo the 18th surgery in her young life – the 7th on her right knee. Cowden’s Syndrome carries a high correlation to vascular malformations like the Arteriovenous Malformation (AVM) that grew in that knee. After 6 embolizations to curtail the blood flow, she now deals with the repercussions of having blood lingering in the knee. There is wearing away of tissue causing the patella to shift. There is extreme pain, not just in the knee, but all through her body. Her right foot stopped growing years ago, but the left one kept at it. Now a full size apart, different in length and width, her 5’8″ frame feels the repercussions with every step. She is regularly at the chiropractor in attempts to minimize pain medication and keep her in alignment. Pain medication caused such GI distress in 2014 that she spent a week in the hospital. Cellular changes in the esophagus are not good in anyone. At 10, with a condition that causes tumor growth, it was certainly another wake up call. We gladly purchase 2 entirely different shoes every time she needs a new pair. We are grateful she walks.

That is just the tip of what this child has endured in under 14 years on this earth. She has had her thyroid removed with 19 nodules and suspicion of malignancy at the age of 10. We still work to balance levels synthetically. She had had TWO D&C procedures to eradicate suspicious tissue in her uterus. She has had a lipoma removed from her back and vascular malformations from each palm. She has lost her gall bladder. She fights, stands up. Moves forward, and gets smacked in the face again.

Soon after our diagnoses in 2011, another mom told me Cowden’s Syndrome requires vigilance. I got it. I am on it. All the time. And with the GRACE of God alone, we are walking the path the best way we can.

We average between 6 and 10 appointments a month between us. The copays and travel costs are often daunting. But, we are fortunate. We have two good jobs my husband and I tell ourselves. We have good insurance.

We are careful with every morsel of food that enters her body. We eat largely organic and non-GMO to let her body use all its energy to stay healthy instead of fighting contaminants. Even at that she is acutely sensitive to almost all gluten, dairy and soy.

We treat as naturally as we can, often incurring bills, as these treatments are rarely covered. Yet, still we prioritize health because we realize its value. And we remember how fortunate we are. We have good insurance. We have two good jobs.

My daughter is awesome. And, not just because she is my daughter. She is a respectful, kind-hearted young lady. She has the voice of an angel. She acts in the plays at school. She reads for fun. She swims passionately. She is an honor student. She talks about her future, and what she will do with her life. I have no doubt she has the capability to make a real difference in this world, regardless of her career path. Today however, I am left to wonder. Will any job ever be enough?

If the AHCA passes the Senate, we will likely be placed in an unregulated “high-risk pool.” This is not like my car accident. This is not a minor inconvenience. This has the potential to decide the course she will have to take with her adult life, as her health issues will not go away. We have this genetic mutation with all its risks and ramifications for life. Lifetime caps, potentially re-instituted will likely be met in her 20s, if not before.

There is no way at all to prove where the mutation came from. I’d ask you to indulge in a theory with me a moment. My father, a Vietnam Veteran was heavily exposed to Agent Orange as a Marine in 1967-1968. My mutation was traced to my father. He never manifested with Cowden’s Syndrome, but somehow passed that mutation on to me. Wouldn’t it be ironic, if that toxic exposure in the jungles of Vietnam, in an attempt to fight for his country, ultimately led to this condition in his daughter and granddaughter? Dad died in 2013, pancreatic cancer that may or may not have been Agent Orange related. I’m glad he is not here to see the reality that our government may be on the cusp of turning it’s back on his family.

I was raised a proud American. In addition to my Dad, I have three Grandfathers who were World War II Veterans. I value the principles this country was founded on. I am grateful for the freedoms I have in this country.

I have not been raised to use the phrase, “that’s not fair,” but I will ask you to consider a few things.

Last night as I watched the news my head spun as I heard elected officials allege that people with pre-existing conditions have not led good lives. I am not here to compare, but I will tell you our “pre-existing” condition has NOTHING to do with lifestyle choices. And if you do not like the site this link came from – scroll to the video. Hear it from his mouth.

http://www.politicususa.com/2017/05/01/gop-congressman-people-pre-existing-conditions-bad-people-pay.html

I can name dozens of people off the top of my head, as close as within my own family, that would be grossly negatively affected by the establishment of “high risk” pools.

Should a cancer survivor, an MS patient, a diabetic, a person with a brain tumor, a rare heart condition, a genetic mutation, or countless other conditions be forced to make decision on the path their life should take because they are too expensive? Are they less valuable? Do they matter less?

Should we be asked to decide whether or not to keep critical screening appointments, or have access to necessary medication blocked by cost?

We have two good jobs, and this whole thing terrifies me. But, I will not be controlled by that terror.

This post will reach my Senators today. Social media can be used for good. I have a voice. I will not be quiet about this.

Tell your story. And if you can’t find your own words, share mine. Let our Senators know that we are real. We are not numbers. We are not a cost-cutting measure. We have faces, and names. We matter. We all matter.

We are determined to remain