Knee – Page 4 – beatingcowdens

Dear Cowden’s Syndrome,

Published on March 15, 2015March 15, 2015 by beatingcowdens2 Comments

I’ve wanted to talk to you ever since you rudely introduced yourself to my family in 2011. Actually it wasn’t even a proper introduction. It was more like, “I’m here. I’m staying. What are you going to do about it?” In hindsight, you’ve probably been with me from the very beginning, an explanation for the years spent in surgery for random growths all over my body. And you know what? I could have kept quiet about things. I could have plodded along removing lumps and bumps as they surfaced, praying they remained benign. But, you crossed a line. You messed with my girl.

I went all those years not knowing. I never understood why I seemed to spend an inordinate amount of time in doctor’s offices, generally being made to feel like an idiot for things they could not explain and did not understand. But, I’m a mother now, and mothers get over those things because nothing is more important to them than the health of their children.

So when my then 8 year-old was introduced to you at an incredibly tender age, the mother beast in me came alive. Before I could even contend with your existence I had to run damage control and get out in front of the storms you were plotting and planning. I had to read and research and learn, because with an occurrence rate of 1 in 200,000, I typically knew more than any doctor we met. And with our PTEN (tumor suppressor) gene officially listed as broken, the words cancer, cancer risk, and potential malignancy became part of our every day vocabulary.

That entire first year I was sure we had lost our very existence to the routine screenings you require. A doctor for every body part, and a pediatric and an adult version of each no less. Scheduling was a nightmare. It’s a wonder I kept my job and my sanity. And my girl, almost like a deer in headlights, tired of being poked and prodded and treated like a pincushion was getting plenty annoyed. She’d already had 8 surgeries, and a ridiculous number of biopsies and MRIs before we met you. Now there was this road ahead that was just flat out exhausting. There were worries heaped upon worries. And it got old real fast.

Our friends have tried to hang with us. And they are an incredible lot. But, it gets tiresome to hear that things just keep on coming, and that nothing here is “all better.” Understandably, many of them have had to pull back. Their own lives are busy. Things continue, and just because you want to have your way with us, the world can’t stop spinning. We miss socializing. We miss casual get-togethers. It’s hard enough to even visit properly with our family in between appointments, and hospital stays and the few activities you haven’t taken from my daughter.

Let’s talk about that for a minute. Let’s talk about the pain. The unforgiving knee pain that affects every aspect of her life. Let’s talk about having to quit soccer in 1st grade, and dance 2 years later. Let’s talk about her desire to run track that can never ever be. Let’s talk about my girl, born with the heart of an athlete who keeps getting the rules changed on her.

The knee! The right knee. The one that has hurt since birth. The one where the AVM (arteriovenous malformation) was supposed to be resolved in or or two embolizations. Until they learned of you. You would be the reason it continues to plague her, change the course of her life, and cause her undue agony on a daily basis. You would be the reason the 5th attempt to fix it in November after 50ccs of blood leaked into her knee joint essentially failed. You would be the reason we are awaiting a 6th surgery on the knee. This one with the orthopedist and the interventional cardiologist at the same time. One will assess the damage from all this blood, and the other will have another go at this AVM.

The AVM. The likely reason the feet are now a size and a half apart. Continuing to make life easy for my girl aren’t you?

And while we’re at it, let’s talk about the thyroid. The 19 nodules you allowed to grow there, until “precancerous” prompted complete excision. We beat you. We got it out in time. But, it was real close, and I didn’t like it one bit. And as payback, 13 months later, the synthetic hormones still leave her chronically wiped out, and running on raw nerve. The endocrinologist is confused. He offers no explanation as to why it’s not ok. They offer me no answers about the effects on the body. Because they don’t know. You’ve kept them confused, and it’s wearing on my nerves.

But, you know what? You won’t win. Not here. Not in this house. Not with my daughter and I fighting you every step of the way. We like to call ourselves “Beatingcowdens,” because we are. And we will continue to.

See, you messed with the wrong women here.

After we dusted ourselves off and learned to schedule the screenings and tests and surgeries on OUR time, we started to breathe a little. There are so many. But, they don’t OWN us. Plus, I went on ahead of you and got some things removed. That “prophylactic mastectomy” that turned into “thank goodness she got that DCIS we didn’t know was there out in time…” well, that was a HUGE win. And the hysterectomy before the uterine polyp could change its mind from benign to malignant. Winning.

My daughter has decided to become an advocate for rare diseases. Her work has begun small, out of a need to educate the people who judged her for sometimes needing a wheelchair to contend with that knee. It started with some business cards that explain what Cowden’s Syndrome is. It blossomed into assemblies at school, newspaper articles, and a friendship with our Borough President.

She took to the Global Genes Project, and their logo, “Hope, It’s in our genes.” She had a friend make a denim ribbon necklace. And “identity piece” for her. She learned about all the rare diseases she could, and how so many of the babies who can’t speak for themselves need our help.

She embraced the creation of the PTEN Hamartoma Tumor Syndrome foundation in 2013. She carries hope that one day their work will affect change directly in our lives.

She met up with friends through my online connections. She corresponds with Colorado and Australia.

In February, with only guidance from me, she organized a “Jeans for Rare Genes” fundraising breakfast that generated $12,200 for her two favorite charities. Over 150 people attended that event. Community support was overwhelming.

Oh, and the heart of an athlete you tried to take from her… you lost there too. She is a swimmer now. And this year she qualified for Silver Championships in the 100 butterfly for her age group.

So, despite what you may have tried to do to our lives, you are losing terribly. You are something we will have to deal with for the rest of our lives, but you will NEVER own us. You may try to be pushy. You may be downright rude, hurtful and insensitive at times. But, that’s OK. We’ve handled worse than you, and we’ve come out just fine.

As a matter of fact, maybe I should say thank you. Thank you for lighting the fire in our bellies. Thank you for helping us find our self-confidence. Thank you for giving us the fight that forces us to never ever give up. Thank you for teaching us that we can make a difference. Thank you for empowering my beautiful young lady with a forceful strength that WILL change the world.

You’re not the boss of us.

Forever we remain,

BEATINGCOWDENS!

Lori & Meghan

The Heart of a Champion – an open letter to my daughter

Published on March 1, 2015July 3, 2024 by beatingcowdens2 Comments

Dear Meghan,

Today Daddy and I watched you swim in the Silver Championship meet. It was your first qualifying meet, and it won’t be your last. We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming. To say we are proud would not even begin to define how we feel.

Today was just another example of how you amaze us, astound us and impress us. I know, parents are supposed to be proud of their kids. I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.

I get that you like swimming because you can feel “normal.” There is no special treatment in the pool and the clock forgives nothing. Cut times are clear and either you make it or you don’t. Believe me, I don’t look to make excuses for anything or anyone. You know that I can be kind of tough. (I get that from Grandma, along with a bark that’s worse than my bite… :-)) But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.

Living with Cowden’s Syndrome is a tenuous balancing act. To stay on top of things the way you do takes intense effort. I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.

Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out. I gave you every excuse not to swim today. You wouldn’t hear of it. Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch. It took you hours to rest because your body allows nothing to contend with the pain. So I held your hand as you wiggled and squirmed for hours. I reminded you I loved you as you desperately tried to rest. I stroked your head when you finally passed out from exhaustion. And I was glad the lights were off to hide the tears that stained my face. Tears, not of pity, but of grueling agony of watching my dearest love suffer some more. I knew as I laid there it was unfair. That your knee was still hurting too, and now your back. I knew I made no sense for all this to be coming the night before something you wanted so badly.

That defines your life. Sometimes the hits are small and consistent. Sometimes they come out of nowhere, but you just keep going. You just keep fighting. And truth be told, you inspire me to do the same.

Yesterday we went to look at shoes. You’ve been complaining for months that your left sock is tight. The orthopedist measured your feet and acknowledged the 1cm difference between them. But, I don’t think either of us took in the reality until we were in the shoe store and saw this.

Another realization that we needed to go about things a different way. So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s. He will help us. Because we asked. But, I know it got into your head. The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time. And I HATE not having any answers for you. But I don’t. I can only promise to be with you every single step of the way.

And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy. It was just over a year ago you became a thyroid cancer “previvor” when your 19 nodules, including three precancerous ones, came out with your thyroid. It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced. We don’t give up. We keep trying. But its you who has to wake up every day and ~~function~~ ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.

So when you took the block today, I took a moment to take it all in. I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest. I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart. I saw the feisty determination that gets you through each day.

You might not have seen your best time on the board. But, me, I saw a champion.

The free dictionary defines a champion as:

cham·pi·on

(chăm′pē-ən)

1. One that wins first place or first prize in a competition.

2. One that is clearly superior or has the attributes of a winner: a champion at teaching.

3. An ardent defender or supporter of a cause or another person: a champion of the homeless. (or those with rare diseases – Ok I added that)

4. One who fights; a warrior.

And while you may not get a first place medal, you have won by walking through the door. You have overcome greater odds than anyone ever really knows.

You take the high road, even when it’s the tougher one to walk. You put other people first. You advocate for those less fortunate. You stand strong for what you believe. You excel in school. You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too. You my girl, are a warrior, a true champion. Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons. Success is defined by your character, by the person you are.

So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul. Know that I respect that you daily work to be the best YOU, you can be. Know that YOUR BEST is ALWAYS good enough. Know that your compassion changes people. Know that you, in your own way are making an impact in this world. And most of all, know that you have two parents who love you more than you can possibly understand.

Thank you. For being more than I could have ever hoped for in a daughter. For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand. You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.

All my love always,

Mom

World Rare Disease Day – Advocacy and Awareness

Published on February 27, 2015February 27, 2015 by beatingcowdensLeave a comment

World Rare Disease Day is February 28th. Although the actual day is February 29th (the rarest day…)

It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.

Our fundraiser has ended for the year. Our checks have been sent. All that’s left for tomorrow is our denim ribbons and our shirts. This day is right up Meghan’s alley. Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.

Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I ~~suspect~~ am sure that we are more effective advocates BECAUSE we are patients too.

I get that not all diseases, ailments, or medical issues are “RARE.” I also fully understand that that doesn’t make one more important than the other. It’s just that when you have a chronic illness, life is really challenging. When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.

I texted my husband yesterday afternoon to let him know I was going grocery shopping. He told me I was nuts. A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right. Except he didn’t argue. Timing would not allow him to go.

Grocery shopping in my house is an endeavor. I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip. It’s one of the few things easier in the winter – as I don’t have to pack ice!

Why such a journey? Meghan.

Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition. Meghan has had food “issues” since birth. Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods. She takes digestive enzymes with every meal, and a host of nutritional supplements.

She went from grossly behind in speech/ language to miles ahead. She surpassed extensive sensory issues.

I don’t cook. Ever. But, I shop. And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us. My husband never disappoints. He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy. He is fantastic.

I shop at Wegmans. And at Whole Foods. Most things Meghan eats are organic, and by default a lot of ours is too. My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too. It is the sole reason we don’t settle all out debt. And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.

The game changer was the addition of a nutritional cleansing program I have come to trust into her diet. Felix has been using it for almost three years. Meghan and I for about 18 months.

Felix needed to lose weight. But almost as an after effect, after losing 50 pounds, he noticed he felt great. I cautiously introduced the product to Meghan in slow, low doses. Once I was clear she had no reaction, I went all in. For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days. Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!

Growth spurt? Maybe. But the hair, the skin, the nails, the teeth. She glows of good health. She missed her shake for 2 days a month ago. She had a tough swim and felt awful. Coincidence? Maybe. But she’s not even taking chances any more.

In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too. We don’t just trust any protein shake. Ours is high in whey protein from “happy cows” in New Zealand. And my girl who can have no dairy at all without severe pain – tolerates these like nothing.

Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?

I could debate processed vs. natural vs. organic all day. What I have here is results.

When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.

Meghan got out of swim practice tonight. She never gets out of the pool. Her coaches know that. I know that.

“It hurts Mom.”

Dropping stomach, smiling face…

She knows. All of it. Whether I say it or not. She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.

She has earned the right to sit out. Her coaches know how hard she works. She waited for starts – to get a few in before Sunday’s Silver Championship meet.

On the way to the car she told me she wasn’t sure the knee would hold till May.

I am still waiting for a call back from the orthopedist from last week. Apparently her notes are being typed. He can’t possibly speak to her case without them. He saw 65 patients the day we were there.

The knee is swollen. We will try ice. Hopefully that’s it.

“What if it’s blood?”

“What if it’s not?”

That’s kind of how the conversation went.

Truth is, neither of us know. So we will press on. We have the main plan – the one that lasts till May. And we have the back up. The one where we just yell “plot twist!” and go with whatever happens.

Why did I go grocery shopping last night? For Meghan. For her food. And so she sees me press on. Despite being hurt. Because if I don’t press on through tough times, how can I ask the same of her?

My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.

Rare Disease Day 2015. It’s not so much about “celebrating” as it is about advocacy and awareness.

Because the under diagnosed, the underfunded, and the often ignored – matter. Very much.

We are BEATINGCOWDENS… One day at a time…

I used to be afraid of roller coasters

Published on November 25, 2014November 25, 2014 by beatingcowdens1 Comment

I used to be afraid of roller coasters, and their short, fast twisting, turning excitement.

Then I realized roller coasters and life have a lot in common. So I started riding them, cause really -what the heck?

If there has ever been a lesson in the unpredictable nature of life, I am confident it has played out in the last two or so years. And I am confident I have studied hard, and that I understand. I understand that just when you think you might understand – you don’t.

You see, just when you think you may even comprehend the every-changing, unpredictable nature of life around us, there will inevitably be a way to prove to you you don’t have it quite right.

There have been more funerals this year than I care to count. Maybe its always like this, and I am just noticing now that 40 is behind me. Or maybe not. But there have been funerals for friends, for the brother of friend, for my own father, for my uncle, the precious father of three beautiful adult children, and for my Grandma, and a well-loved great-uncle, and the grandparents and parents of friends… and…

As I sit here thinking about all of them I try for the umpteenth time to rationalize. And I get farther with some than others. Some will just never do.

But the ultimate realization is that it’s not really mine to figure out. It’s not mine to decide how it fits in the grand plan. And I’m trying to stop looking to figure it out. Because, boy it can be exhausting.

And as I sit here in the wee small hours of the morning, I remember – that painful Thanksgiving week last year, as Dad fought and fought, and I wonder why. But, as much as I miss him, it’s not in a pitying kind of why. It’s in a genuine curiosity for something I will likely never be allowed to understand. Very much the way he used to ask me why he made it home from Vietnam and his friend Tommy didn’t.

It’s the same kind if why when Mom asks, why after being 18 years a breast cancer survivor, why she is “clean,” and so many have lost the fight.

As I listen to the rhythmic snoring of my husband, and watch my fidgety sleeping 11-year-old, I wonder.

I wonder how we ended up here – again, on the second floor of this hospital. Today. Now.

12 hours ago I thought I was tired. HA! What did I know.

450 miles in about 30 hours to celebrate the life of a great man, my uncle. Lots of driving, lots of thinking, lots of observing. Lots of admiration for his children, grown up children, who undoubtedly will make him proud forever with their compassion and good humor. Lots of respect for his wife – living her marriage vows through all the crappy stuff with poise and dignity. Lots of awe for my other Dad Ken, and GGMa, his mom, as they stood together, their original immediate family ripped in half in just over 2 years time.

12 hours ago I thought I would go to bed early.

But I ended up picking Meghan up from swim practice on the way home from Vermont. And she walked out of the locker room and almost fell to the ground with tears.

“I can’t walk. It’s my knee.”

And I checked off the list – Did you fall? Did you bang it? Did you hurt it doing dryland? One at a time I asked the questions, even though I knew the answers.

This knee. The one we’ve been waiting for since we stopped the celebrex had finally given way.

We had had hopes of finishing swim season first. That was before we had to refocus our hopes to making it into urgi care without falling.

We were promptly told to get out, and get to an ER. Fast. The swelling was too big.

Still in my funeral clothes I raced home long enough to tell Felix to dress for work, and to get into some sweats. A quick bag for Meghan and I and we were off. This time to Lenox Hill ER. Cause that’s where they do the knee surgeries. And not that I’m trying to plan. But just in case… Maybe we should be at the right place.

They contacted her doctor. He’s sure it’s the AVM, but he’ll confirm in person in another hour or so. In the mean time nothing to eat or drink for Ms. Meghan after midnight. Just in case.

AND regardless – we remain BEATINGCOWDENS!

Bookends

Published on August 31, 2012 by beatingcowdens1 Comment

So my little girl took some of the influence of her Dad and has taken a liking to comic books. She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea. I like Superheroes, and their “Good beats evil” message. I know it doesn’t always work out that way, but she is 9…

I sat in the MRI room with Meghan tonight – again. And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.

Yep, bookends. See, back in June, on the first day after school was out for the summer we went for an MRI of her knee. It was a Thursday, the Thursday before July 4th. So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.

Bookends. Our summer ends the way it began, waiting for test results. Although I am starting to get the feeling that this testing and waiting will transcend all seasons. I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)

And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago. This is what we do.

We do not accept anything less than an answer that makes Mommy comfortable. When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point. When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow. My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it. So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder. That is what the MRI was today. My fault. I needed to have them rule out a pituitary tumor. We have Cowden’s Syndrome. We grow things. Someone should check. Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.

And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue. He wants to see her the next time she has strep. He shouldn’t have to wait too long. He also told me the right lobe of her thyroid was quite enlarged.

So we wait for the thyroid panel, and wonder if it has changed drastically. And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.

Bookends.

We started the summer at the doctor. We spent most of the summer at the doctor. Scan this, check that. It will never happen like this again if I can control it, but it was necessary this time.

And in between the bookends of MRIs, we fit in some fun stuff. There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.) There were some lazy days, and lots of just being together time. We can get a lot of talking in on all those trips to the doctor.

I guess the summer wasn’t a total loss, and yet still somehow I feel sad. Cheated. I stress at the thought of the scheduling complications being back at work brings. Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough. Complicate it with Cowden’s x2 and it gets hairy.

Maybe I feel like this every summer. Maybe I just love my girl too much. Time marches on. School next week ready or not!

My Most Special Gift

Published on July 31, 2012July 31, 2012 by beatingcowdens1 Comment

Meg and dogs — Lucky, Meghan and Allie – My three girls

I am sitting on the couch, alone. Unable to sleep because of the pain in my knee.

My left knee and I have quite a history. Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work. A car accident in 1991 banged it up and started the swelling on and off. Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years. Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.

There are other things that we need to do first. Plus, we can’t spend our WHOLE life at the doctor.

So, when I am in my worst pain. The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.

I will be 40 in a little over a year. My joints have had some time to wear and tear. She will be 9 in a week. She can’t run or ride a bike without pain in her knee. She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there. Even on the “good days.” She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.

As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my life” is less scary. Then there is my girl.

Soon to be 9 years old. Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth, precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.

Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.

Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time. And He gave me one heck of a sweet gift in my little girl.

The Cowden’s Syndrome Roller Coaster

Published on July 18, 2012July 18, 2012 by beatingcowdens1 Comment

Maybe if I could attach my cell phone right here…

I can not tell you for the life of me why Spiderman was on my mind today, but I was thinking I could use one of those web shooting things. It could be modified to hold the cell phone that is constantly in my hand! I remember when Meghan was so colicky, and I used to carry her all day in that Baby Bjorn carrier. I LOVED having my hands free again. I hated that she just kept crying, but at least I could move around a bit. I am starting to feel painfully tethered to my phone. I waited forever for the vascular surgeon to call. Now Dr. K from Boston called Saturday, and we still haven’t connected.

1D10A322-10E4-41B9-8F21-EE59F4EF0940 — Paranoid to miss his call, I carry my phone EVERYWHERE I go. I am not kidding, that is my cell phone in the plastic bag at the beach today.

54DBA6A0-F7C3-4554-AC2E-A3334649A24D

Today was a banner day.

It was the FIRST time we have been to the beach since before her first birthday.

This child was so sensory sensitive that we were both deeply traumatized by the first trip. It took us almost 8 years to work up the nerve to do it again, and boy has she come a LONG WAY!

We only stayed a few hours.

Long enough to get into the sand and build a castle. Long enough to find a few shells. Long enough to jump a few waves. Long enough for her to say, “Mom my knee is clicking every time I step and it hurts.”

Clutching my old scratched up cell phone like it holds the answers to all life’s problems I silently, desperately, wish it would ring.

But then what?

Will Dr. K have a single answer?

Will he want us to drive 5 hours just so he can say, “I don’t know?”

Yesterday we saw Dr. P – the geneticist at NYU who started all this about a year ago.

It was a friendly visit, catching up on all we have done. I had a chance to thank him for “catching” the Cowden’s Syndrome a year ago. It was his desire to dig deeper, and to solve the puzzle, that undoubtedly changed the course of our lives, and likely already saved mine.

He asked a lot of questions again. He looked closely at Meghan, especially her legs. He pointed out again the 1/2 cm discrepancy. He pointed out the swelling in her LEFT knee, likely the result of her favoring her right knee. (The AWESOME PT Dr. Jill, already called that one!)

He listened to my concerns about her avoidance of activities. He said the fact that the Celebrex is working means to him she likely has arthritis due to deterioration from small amounts of blood circulating the knee joint. Not JRA, but degenerative arthritis. He said she can’t stay on Celebrex forever. And although I knew that I was busy shuddering at the alternatives.

He will nose around, and see if he can get a closer orthopedist to take a look. Then he will look for an oncologist for me. In the mean time he said, let’s just get a screening sonogram of her kidneys, to be safe. Just a baseline.

3 hours later we had word that her kidneys are “beautiful” and untouched by Cowden’s. We left NYU exhausted, and relieved, but still waiting. Always waiting, and wondering, and worrying. What next? Can we fix it? Wait… nothing new please! We haven’t fixed the last thing yet… and so on and so on.

Tomorrow we will go back to the pediatrician to recheck for the recurrent strep. Then, a much anticipated play date for Meghan.

Then Friday, its to the plastic surgeon for my recheck, with another playdate for Meghan.

All the while my cell phone will be close at hand. Last year at Disney they finally got me on Big Thunder Mountain Railroad. Good thing. I think it’s a case of life imitating amusement park here.

Cowden’s Syndrome is a great big roller coaster, so I better get a stronger stomach!

The Mommy Monster is BACK!

Published on July 14, 2012July 14, 2012 by beatingcowdensLeave a comment

See… all it really takes is for the wrong person to tick me off, and the tears just dry right up!

We went out today. I told you I like Saturdays. Family days. No doctors. We went to visit my parents, and my grandparents. Saw my sister and my nephews. Then we spent the afternoon with friends at a birthday party for 3 year old twins. Good times. I was even able to eat a slice of pizza. I have had less than no appetite these last few months, so I was impressed. Feeling pretty good we got home around 6 – and took in the mail.

It was clearly a bill, but I wasn’t prepared for it to read $750, “previous balance.” Followed by an admonishment that we should pay immediately.

Again I repeat, “HAS EVERYONE LOST THEIR EFFIN MINDS?”

There are things we don’t do in this house. We never give money to phone solicitors, and we NEVER pay a non itemized bill – ever. Not even if it is for $7.50.

So I went down to my very thick “pending” file, to find that on November 29, 2010 (because this is for surgeries in December of 2009 and April of 2010) I sent them a LONG and detailed letter with all the EOBs attached, stating why I owe them nothing.

Really, stupid people who choose not to do their job, and make work for other people REALLY annoy me!

As I got all fired up for Monday’s battle, I noticed the answering machine was flashing.

Checking the message I saw it was a Massachusetts number. At 4:30 PM today, apparently Dr. K from Boston was in his office reviewing Meghan’s MRI.

I sent him the report yesterday after my visit in NYC. I also sent him a cover letter which essentially said, what Dr. R had concluded – that there was no mass in the knee, and that Meghan is still having some pain in the knee. I closed the brief cover letter by asking him to keep the report in her file should I need him at some point in the future. I made a point of telling him “If I do not hear from you I will assume you are in agreement with Dr. R’s findings.”

SURPRISE! More opinions weighing in from up north in Boston.

Dr. K’s message said the knee MRI “looked good” in terms of him not seeing blood on the joint. He said, ” I know what you wrote about Dr. R not seeing a mass. I just think if she has symptoms you should bring her to me for evaluation. Give it another few weeks and come up in the early fall.” (Sure…. no conflict with the school calendar there)

Relieved to hear the “old boys club” doesn’t supersede professional opinion in this case.

As for what happens next – who knows? Every day is a great adventure for sure. At least the Mommy Monster is back in full swing. Looking forward to fighting the good fight Monday morning.

I will probably call Dr. K – just to be clear on his thoughts too. It’s Saturday night. Monday’s agenda is set. And I have set my own internal countdown to Disney – the family vacation. Keeping my eye on the prize. God willing the doctors can’t find us there.

Headed to bed now. Tomorrow I will take my family to a cute little church a few miles away from the one I grew up in. The people I love aren’t there, but they are nice people too. And we will thank God for the blessings that have come from a week of ups and downs.

Cowden’s Syndrome is exhausting… but we can take it!

I really wish I had kept my broken genes to myself!

Published on July 13, 2012July 13, 2012 by beatingcowdens4 Comments

Apparently this has become like a sleeping pill to me. This is the place I go at night, to sort out all the emotions of the day before I can try to find some rest. I can’t imagine that will do anything to gather more readers, but it is certainly helping my sanity.

I am trying to find the balance, for both my daughter and myself. The balance between being properly scanned and “on top” of all our countless risks, while not letting doctors take over our lives. Because the truth is, they don’t know a whole heck of a lot about Cowden’s Syndrome. Most of them don’t care to find out, and the few that do, well – I will let you know. I think we have 3 between us that seem truly willing to learn.

So today I took Meghan to the vascular surgeon. The same doctor that has embolized the AVM in her knee 4 times. The same doctor who in February, right after the 4th procedure, handed me the name of a doctor in Boston. “We just drained 30 ccs of blood from under your daughter’s kneecap. I don’t know why it was there. You should go meet with this doctor and see what he has to say. He will likely want to put a scope under her kneecap after she has healed.”

After ascertaining it wasn’t an emergency, but not something we should sleep on, we met Dr. K in Boston over the April break. He examined her, without the CD images that I had pleaded with the NY doctor to send up 3 weeks PRIOR to our appointment. He said he wanted to keep an eye on it, and to repeat the MRI/MRA in 6 months.

So we did. And on Monday the PA who had been in the OR with the surgeon and my daughter 4 times tried to tell me there was nothing in her knee.

Today, armed with a 2 page report and the paper the surgeon gave me in February with the Boston doctor’s name on it, we went for our visit.

I am still confused by the number of inconsistencies that happened in one small room. The surgeon began by taking back his concern from February and telling me he just wanted the Boston doctor to get a baseline on Meghan “just in case.”

Which, I though to myself, I am sure is true because I definitely would have made a 5 hour drive 4 weeks after a double mastectomy if he was so nonchalant.

Then, he held to his story that there was nothing in her knee. Even as I pointed to an obvious bump he told me it was nothing. I questioned him on the report, the one that says there is a stable 2.8 x0.7cm mass. He told me he reviewed the CD and disagrees with the report. Even as I told him I found the report to be strikingly similar to the December report, he offered to sonogram the knee to confirm “nothing.” On sonogram he said there is a gathering of tissue (do I need to define mass?)

So, he said to bring her back in 6 months. They will reevaluate. Then we will repeat the MRI in a year.

Have I mentioned I cry when I am frustrated?

Well somewhere about 10 minutes into the conversation, when he was busy changing his story and disagreeing with the report I got overwhelmed. Shouldn’t have done it, but I cried. Fatal mistake. I now look like a complete ass, when that is his job. And he does it better than I ever could. He actually had the nerve to lecture me that I would make my daughter upset. I still can’t believe I took that. (Still stewing!) AND, I shot Meghan th evil eye to keep her quiet and remind her of her manners.

I HATE the crying thing. I have been working on it for years. UGH!

You know I wasn’t crying because i was sad. I actually was really relieved at the thought that no surgery was necessary. I was frustrated by arrogance, lack of clarity, and overall lack of concern for my daughter the whole person.

See, no one else knows the tears she sheds about this damned knee. The things she can not participate in, or the modifications she has to make just to avoid pain. She does them effortlessly. Every day. No one knows except me. And it kills me.

So when we were leaving I tried to find the bright side. I said, “See, at least you won’t need knee surgery this year.” To which my far too bright, soon to be 9 year old responded, “I am not sure. To me surgery makes it worse, and not having surgery means no one is going to do anything to make it better. Guess my knee is going to feel this awful forever!”

Now I could have tried to tell her that maybe it will be better by itself, but I respect her way too much, because as much as I would love to believe it – I don’t.

AVMs are difficult to deal with anyway. When you combine them with a PTEN mutation, they are ridiculous to control.

Just one aspect of a multifaceted disease.

I really wish I had kept my broken genes to myself.

You can’t make this up…

Published on July 9, 2012July 9, 2012 by beatingcowdens1 Comment

So I waited, again, all day for the phone call about the knee. I put in my reminder call at 10 this morning and again at 4pm. I was told they would look it over after their patients.

The call came at 5:20. It was from the surgeon’s PA who does know Meghan and has sat in on her cases from the start. The doctor doesn’t make the phone calls- ever. I must admit for some reason I did not tell the PA that I was holding a copy of the report as she spoke to me. I really wanted to hear what she had to say.

Actually what I REALLY wanted, was to hear, “You have a stable AVM.” Let’s look at it again in 6 months. I would have been jumping up and down. I am beginning to like ” 6 months.”

That is what I was ready for – but this is what I got…

“We reviewed your daughter’s MRI and it is normal.”

NORMAL?

“Yes it is a normal MRI.”

DO YOU MEAN THERE IS AN AVM THERE THAT JUST ISN’T GROWING?

“No we don’t see an AVM.”

THEY TOOK 5000 IMAGES (and that this point I wanted to shout that the damned report cites a 2.8 x0.7cm mass, but I didn’t) ARE YOU SURE YOU LOOKED AT ALL OF THEM?

“Yes, there is no evidence of an AVM. I know you wanted Dr. K in Boston to review these images..”

NO, I NEVER EVEN KNEW THERE WAS A DR. K IN BOSTON UNTIL YOU TOLD ME TO CONSULT HIM! SHOULD HE REVIEW THE IMAGES?

“That is up to you.”

WELL WHAT ABOUT THE FACT THAT THERE IS A PALPABLE MASS ON THE INSIDE OF HER RIGHT KNEE ABOUT THE SIZE OF A PEANUT?

“Oh, you should bring her in so we could look at that.”

IT HAS ALWAYS BEEN THERE!!

“Bring her in so we could look at it.”

(In my own mind…you have a CD ROM with 5,000 images. You have a report that says there is a mass, but yet somehow you pointing to it and saying, Yep that’s a mass is going to make this better?)

I walked for about 2 hours after this call. It took that long to shift my emotions from irate to angry.

Once again with my back against a wall, I will call tomorrow for an appointment.

Another wasted day in NYC with its pricey parking garages, and doctors that are supposed to really give a crap. Another day of summer burned for nothing.

Starting to feel like I am in the Twilight Zone.

Thanks PTEN. Thanks Cowden’s Syndrome. I like you about as much as Dr. R. – and right now that isn’t saying much!