Yesterday afternoon began very typical of so many of our days. I left work, got Meghan at school, and instead of heading home we headed to 60th and 5th for a doctor’s appointment.
Trip to Manhattan, not a problem. Trip IN Manhattan – super high stress.
Felix met us and I was able to let Meghan out of the car to endure the extra 20 minutes needed to get around the block to the parking garage I had printed a coupon for. Silly as it may sound, that advanced planing has saved me hundreds of dollars – as our bill yesterday alone was a meager $35 for the lot as compared to the $63 it could have been.
Inside we filled out tons of paperwork, Meghan and I as new patients, and Felix in for his one year follow up. It was the first time we’ve actually had an appointment as a family.
Last year we ended up with this doctor for Felix after a skin biopsy went bad locally. It took weeks for me to obtain less than favorable results, news of unclear margins, and the potential wait of several weeks for a repeat excision. I promptly transferred the biopsy slides and all information to a cancer specialty center in Manhattan and we met our doctor. She had the slides reviewed and told Felix that not one, but BOTH sites biopsied needed further attention. She took them to clean margins and ultimately diagnosed him with “Dysplastic Nevus Syndrome.” He had been fortunate. Precancerous lesions cleanly removed. Annual screening from then until forever.
This year Felix squirmed a bit when I talked about his follow up, but I knew if we could all be connected to this doctor it would be a win all around. Little did I know the scope of the score it would be.
Meghan, now with not only Cowden’s to raise her skin cancer risk, but also the genetic “dysplastic nevus syndrome” potentially inherited from her father, needed a dermatologist in place for annual screenings – ASAP. And for me, well, it was something I had been doing, but not with someone too good. Time to ratchet it up a notch.
The doctor was amazing.
She immediately made Meghan feel comfortable and valuable, and spoke with her at length about the presentation of Cowden’s Syndrome she had experienced. My daughter is incredibly empowered about her own health and held a 10 minute conversation quite nicely. While I filled in a few gaps, the doctor told us she had worked previously at the NIH, (National Institute of Health,) and the NCI (National Cancer Institute) and was therefore, aware of Cowden’s Syndrome. That alone is a rarity in our world.
But she took it much farther than that. She wanted to know about the disease presentation in me as well. She wanted to know how much had gone on before and after diagnosis, and how difficult of a path we had traveled to try and find knowledgeable doctors. She was in constant thought, wondering about what she could do. She spoke almost immediately about training her peers to be the front lines in screening for Cowden’s Syndrome, and how if they could identify classic marks like the trichilemmoma she removed from my forearm, they might be able to raise flags early and help save lives.
Harmless enough, common in Cowden’s Syndrome, she wanted one confirmed though biopsy.Healing… less than 24 hours later.
She wanted to know what we had in terms of screening, and records. What could I send her? CDs? Images? PDF? How fast? She could have my CT scan reread for no fee. Just send everything. (Of course everything is in about 6 inches of binders. So there is sorting and scanning to be done.
What is this http://www.PTENfoundation.org ? She wanted to know. Can she refer people there? What if she publishes in a dermatology journal? Could she list the foundation?
My head was literally spinning – but in a good way for once.
I am going to present on you she said, both of you. But no one has to know its you.
And finally a doctor who ALSO feels this way!
“Can I come?” asks my curious 11 year old.
“Of course…”
And as she took such a liking to Meghan she asked me who was managing her care. When I said, “me.” She was visibly bothered for me.
Someone should be looking after her. Let’s think about what she needs. And with that she rattled off doctors to handle things I couldn’t get my local doctors to address with a ten foot pole. She told me I’d hear from her this week, and from some other doctors too.
I left with three negative exams, 6 months for me and Meghan, and a year for Felix. I left with my belly hungry and my head racing.
Was I dreaming? Had I really finally found the doctor to help us?
No one should have to travel your path alone, she said. You need help navigating.
From her lips to God’s ears. May she be true to her word.
In the mean time I have quite the homework assignment.
So as I sit with my “eventbrite” window open, excitedly hearing the “dings” of attention out February Fundraiser is generating – I am going to get started on perhaps the most important homework of our live
I spent the weekend with my college roommate. She was the one I lived with the longest. She was the one who introduced herself to me the first day. She held me 2 months later as I was wracked in sobs at the loss of my cousin Meghan on my 18th birthday. She learned how to drive in my Toyota. We had fun, shared friends, and life, and got to know each other in deep ways saved for long term friends – or ones you’ve lived with. We gathered enough good dirt on each other to be sure we’d be friends forever.
The last time I saw her was in December. She and her husband showed up at the wake for my Dad.
The time before that was when I made it out to the wake for her Mom.
Somehow we find each other…
And this weekend we hugged first on Friday, in that room in New Jersey, miles away from each of our homes. We cried, and hugged and pulled it together. As the scene was replaying itself again. But this time it was far worse.
College Graduation – 1995
It’s not right that we don’t see each other. And it’s no one’s “fault.” And I have a few dear friends I am in the same situation with – whose kids I’d barely recognize if it weren’t for Facebook and Instagram.
We stood together for a while, just the two of us. Interrupted only by people trickling by. We spoke about his fight. His strength. His battle. I told her how much I respected all he did to fight. I told her I was so privileged to have shared a few email exchanges after he took to this blog.
But, from where we stood, in the out of the way corner that defined her comfort zone, we might have even forgotten why we were there.
Although the reality became apparent through the greetings, and the hugs, and the “I’m so sorry…” sincerely sent in her direction, over and over.
Her little brother had died. Her “little” brother was little in age, not in height or spirit. He had a presence about him 20 years ago when I greeted him in our dorm room. When he spent time with us. His charm, and sincerity, and personality resonated even then.
Her “little” brother was 36. Diagnosed with stage 4 pancreatic cancer months ago, he fought with every fiber of his soul, through every treatment and surgery presented. He fought for his family, for his wife of 10 years, and for his two handsome young sons. He fought out of zest and a love of life. He fought for his siblings and his Dad.
I remember when she and I spoke this summer. I remember the conversation because she asked me a question I didn’t want to answer, but one I had needed to ask myself months earlier. She asked how long it had been for my Dad, from the time he was diagnosed until the end. And as I choked over 10 weeks, I instinctively tried to fill that statement with stupid things… “he’s young, there are things he can do…” But, she had heard a number. Just as I had when I had asked the question months earlier.
And I kept an eye on the calendar as I checked in on my friend. And every day I thought of her. I prayed often for her brother, and the family.
Sunday came the text that he wouldn’t make the week.
Tuesday came the one that said he was no longer suffering.
Friday rolled into today, and we sat. Side by side in a standing room only funeral parlor. We hung onto each other’s hands and friends and family alike shared stories, and memories of a guy who seemed to have been larger than life. And my favorite story of the day came when they said he went back to college after he had his boys. And he got his Master’s Degree too. Not for financial gain, but because, “How can I hold my boys to a higher standard than I hold myself to?” Class. His spirit filled the room. There was an abundance of support, and love.
And then we were at this backyard party at her brother’s house. And to the naked eye it could have seemed like any end of summer gathering. But it wasn’t. People were eating, and sharing stories, and passing time together. And two handsome blond boys ran about with their friends.
And then there will be tomorrow. And this young woman, now a widow, will need to press on for her boys. And those boys will slowly come to the realization that Daddy is never coming home. And his sisters to the reality that he won’t be at the next gathering, and his Dad to the realization that his son and his wife have now gone on before him – leaving him with lots to take care of.
36 years old. Father of 2. Dead from Pancreatic Cancer. Illogical. Incomprehensible. Insidious, painful, horror show of a disease. It just doesn’t make sense.
At all.
And there have been so many things that don’t make sense. Ever. They pale in comparison to the horror of a son and a brother, and a father dying out of order, yet still they are the things that keep me wondering about all things.
I think it was Wednesday at work.
I had a first grade class. And the loudspeaker went something like this, “This is a soft lock down drill. Please take all proper steps.”
And just like that 28 first grade students instinctively went to the back corner of my room. The stayed low and quiet as I shut the lights and the smart board and locked the door. They got themselves out of sight of the glass window on my door. And they sat. Silently. And I was stunned. I think it was the 10th day of school. They range from 5 to 6 years in age. And they never moved. They looked to me for a reassuring face. I faked it.
Truth is as necessary as I know they are – I HATE those things. And in this post 9/11 world, littered with countless nonsensical school shootings, and deaths, I get it. And I take it seriously. And the reality that one day we COULD be a target of chaos doesn’t escape me. But that doesn’t mean I have to LIKE it. I don’t like that we need to scare the crap out of these little ones just in case. They are growing up in a wild world.
So wild that when Meghan’s Social Studies homework became to be aware of the news every day, (something we actively have tried to hide her from because there is just enough CRAP in her life) one of the first stories to come across was terror threats in Times Square. She gets things very quickly. And she is stellar at context clues. Dad’s in Times Square every day.
These kids are growing up in a tough world. Grown up worries. Grown up realities. Young minds. It’s so hard to make any sense of it at all.
And so when the ones who are supposed to help -just don’t, well that seems to make things worse.
In the middle of the renovations that swallowed the end of August, Meghan broke her foot. A stress fracture to one of the superficial top bones. I am absolutely not getting “Mother of the Year”” for this, because I was in full on “suck it up we have things to do” mode for the first 36 hours after she banged the foot hard into a misplaced shelf in the basement. That was a Thursday night. And by Saturday of Labor Day weekend, we found ourselves in Urgent Care with a “suspicion of fracture.” Of course being a holiday that simply meant ice, rest and elevate till Tuesday when we could get to the podiatrist.
And we brought the X-ray, and the report. And everyone was very pleasant and we were told that the X-ray abnormality didn’t exactly line up with the point of severe pain. So, clinically it was appropriate to diagnose a stress fracture, put her in a boot, and have her repeat the X-ray in 2 weeks.
So she began middle school days after getting her braces off, with this giant black boot on her leg. And she plugged along for two weeks, and we got the X-ray repeated as we were told to. So, when we returned to the office for the recheck we gave them the disk and the report.
There was some grumbling about the radiology place we went to writing the “worst” reports (but no one told us where to go,) and some discussion in the other room about things on the film that were “probably nothing.” (Doctors should learn some moms have rabbit ears.)
So he came into the room after having had Meghan take off the boot. There was a surgical resident in tow.
“How does the foot feel?”
Meghan, “Much better.”
“Great, there’s no evidence of fracture on the x-ray. You must have healed. Let’s transition you off the boot.”
Please know during this whole exchange he NEVER EXAMINED HER FOOT!
Me, having already read the X-ray report, ” What about the report talking about “bony bridging and bordering sclerosis.?” Does that mean anything?”
“Well, it’s not causing her pain is it?”
Me,”Well she doesn’t have foot pain, per se, but, there is chronic joint/muscle/bone pain that we work on. Could things being out of order in the foot trigger some of this?”
Me,”I guess really what I’m asking is, is anything on that X-Ray consistent with Cowden’s Syndrome?”
“Well does Cowden’s Syndrome cause bony overgrowth?”
Me, “You’re the doctor, I am asking you.”
“But you are far more familiar with the syndrome than I am.”
Me, in my own brain, Thanks to Google University, and then out loud, “Are you seeing this? (pointing to the extra bone that juts out of her left (and right) feet) on the X-ray?”
(THAT IS A PAGE FROM A WEBSITE, reviewed by a doctor at the cutting edge of PTEN research. It took me less than 10 seconds to find. It verifies bone cysts connected to Cowden’s Syndrome, and had anyone asked I would have been able to tell them about the “non-ossifying fibroma” in the left femur that scared the crap out of us when she was 2.)
“I don’t think so, but you should probably have a specialist look at that. I don’t need to see her again.”
And I turn to see the tiniest tear in the corner of Meghan’s eye…. “Mom, he never even touched my foot. He has no idea what the problem really is. What’s the point of wearing the boot? I have to trust my own body cause they don’t know anything. I think its healed and the boot is hurting my knee.”
Fair enough.
She’s the closest I have to a doctor, and the thing that has made the most sense all week.
When you have a diagnosis that leaves you prepped for cancers of all types at all ages and in all places, there are things that rock you to your core.
Sometimes living with PTEN Hamartoma Tumor Syndrome is like living under the constant threat of a terrorist attack. But the terrorist is cancer.
You get to live in fear, or live your life.
You get to try and make sense of things, or run with them anyway.
With the motivation of those – not connected to us by Cowden’s, but connected to us by life – who have fought the good fight, I try to stay focused. To live life instead of hiding in a corner, or some days under the bed with the lights off…
So many things, so many tragedies will never make sense.
But it’s less about making sense, and more about being sensible. It’s about instinct. And love, and compassion. And cures. I am a big fan of cures.
Tonight, wherever you are in your life. Whatever is rattling your world, I ask you to stop for a minute.
Say a prayer for those two little boys who will begin to know that Daddy is never coming home.
Say a prayer for a family who lost a 36 year old high quality man too soon.
And please. In this world that makes no sense. Do something logical. And kind. For someone. Cause we ALL need it.
Nope, not us. No way. No how. Terrifying. Not going to happen.
Until last week.
Something clicked inside her head, and she decided that she had come to conquer.
There was a pit in my stomach when she first declared she was going to go on Space Mountain. Roller Coasters have never been my thing either.
But, she even decided who was going to sit in front of her and behind her. No getting out of it for me.
She told me that she had been through a lot in her life. And that she shouldn’t be scared of a ride. True. There was that quote by Eleanor Roosevelt we had read, and referred to so many times.
No not the other quote, “The only thing we have to fear is fear itself.” – FDR
This one, “You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I have lived through this horror. I can take the next thing that comes along.’ You must do the thing you think you cannot do.” – Eleanor Roosevelt
The first time we were both a little scared. Then there was the second time. And by the third time she owned it.
“Rocking Roller Coaster!” she declared.
And so we headed to the Aerosmith ride that wasn’t even on the consideration list a year ago. Twice. I went too. And I really didn’t mind.
“Life begins at the edge of your comfort zone…” Words I am learning to be truer each day.
And so in the week that was, we rode Space Mountain, Aerosmith, Big Thunder Mountain, Seven Dwarfs Mine Train, Test Track and even the Barn Stormer together. I did Star Tours too, but virtual reality isn’t really agreeing with me anymore. Maybe too much reality?
So she went on Mission Space with her Dad – twice. Once on the beginner level, then on the advanced. And they rode Splash Mountain too – just because.
It makes me happy to see her conquering fears. There are so few of them, that I am hopeful nothing like a roller coaster ever stands in her way.
And as I reflected on the idea that this kid, this amazing kid had brought me past a fear that had plagued me for decades, I found myself hopeful that she will always dance…
“Never settle for the path of least resistance… I hope you dance…”
“I Hope You Dance” – Lee Ann Womack
I hope you never lose your sense of wonder,
You get your fill to eat but always keep that hunger,
May you never take one single breath for granted,
GOD forbid love ever leave you empty handed,
I hope you still feel small when you stand beside the ocean,
Whenever one door closes I hope one more opens,
Promise me that you’ll give faith a fighting chance,
And when you get the choice to sit it out or dance.I hope you dance….I hope you dance.
But then there are days that it smacks me right across the face. And it stings, no, actually it’s more like a scalding burn.
I post mostly about Meghan. She’s my hero. She’s my inspiration. She motivates me to be a better person, every day. But, if I really want this blog to be transparent, and I really want the truth about our experience living with and beating Cowden’s Syndrome to be out there, sometimes I have to allow my own inner self to be exposed.
I feel good. I really do. Aside from a little lag from my thyroid, I am feeling better and stronger than I have in years.
But there are the scars. They hide behind my clothes like a little secret. Cause people forget. And that’s what I want, because most of the time I forget too.
But then I look in the mirror, and I see the scars across the implants replacing the diseased breasts removed in the nick of time. And my shirt doesn’t sit quite right. And it’s probably my own fault, as I refused the tissue expanders necessary for a proper reconstruction. I didn’t have the time, or the energy, or the desire, or the stamina to put myself through the frequent fills, the repeated pain, and the additional surgery necessary for the sizes to be equal. It just wasn’t worth it to disrupt our lives longer.
I saw the plastic surgeon last week. My two-year follow-up. Hard to imagine. She gently reminded me again that she could even things out whenever I was ready. No cost thanks to the positive pathology for breast cancer, and the genetic mutation. No monetary cost. I’m not ready. Yet.
I saw the breast surgeon last week too. I see her every 6 months, so she can make sure nothing sinister is growing behind those implants. The reality and the reminder that as fortunate as I was – I still had breast cancer. And once you know for sure that those malignant cells had life in your body, you never look at things quite the same. “No lumps or bumps,” she happily reported. “See you in 6 months.”
I can’t wait.
And there are the lymph nodes in my neck. They were checked last week too. Sonogram. As long as they stay stable, we can leave them alone. “But, if they grow…” she reminds me every time. Six months for her too.
And my legs. Fitting into the smallest size they have ever in my life the veins are protruding again. The PTEN diagnosis, known for enhancing vascular issues, perhaps the explanation for the vascular problems that have caused 2 operating room visits and 5 in office procedures since I was 23. But, it doesn’t really matter I guess. The legs start with a familiar heaviness. Then there is the throbbing. The last thing I feel before bed, and the first thing I feel after the alarm gets shut down. And the pulsing – like I can feel the blood moving the wrong way through the broken veins. And the giant bulging, from groin to ankle, that makes it a little less fun to buy the shorts in a size 2. I switch to “Bermuda” length and some sundresses. I wait for the word that GHI has approved another vascular procedure.
Not to mention I saw the GYN Oncologist too. Everything ramped up a notch with the “Cowden’s Syndrome” label. There are no “regular” visits anymore. Even with that benign pathology, it’s a forever commitment to the “Clinical Cancer Center” of the hospital. Two years since the hysterectomy too. Time marches on. You can barely see the scars from the laproscopy. But I know they are there too. A few inches under the implant scars. Reminders of the year that changed my life. Our lives.
The week finished with genetics. Our geneticist – found by an incidental internet search at the recommendation of our physical therapist, is a gem of a man. He greeted me with a hug and a smile, and exclaimed that I looked better than I did at my diagnosis. Then he drew my blood. More genetic testing. This time not because of the Cowden’s Syndrome. This time, it is to fulfill the wishes of my father. Wrapping up a genetic counseling visit I completed in April, and after consent was received from GHI, the vial of blood was drawn to test for the markers for pancreatic cancer, the killer of my father, and paternal grandfather, as well as about 15 other markers I probably don’t want to know about. We both said a silent prayer that the test yielded a whole lot of nothing. We hugged again. It’ll be about 6 weeks.
So this morning my shirt didn’t fit quite right. The indentation on the right side was causing the shirt to fit lopsided. And the vein bulging out of my right leg, especially just above the knee was a little too much for me to take. I struggled with my tears, trying desperately to hide them from my extraordinarily observant soon- to- be -11 year-old.
This is the reality she knows we share. Yet, I want so badly to help her maintain some of her youth. Worry free innocence taken with the words, “You have a mutation on the PTEN gene…” and years of her own surgeries have stripped her of some of the privileges given only to the young. There is something about 11 surgeries with no real end in sight, that can leave you a bit anxious.
It only took a minute. Although it seemed longer. A hug from my husband. My ever patient, loving soul mate, who makes me feel beautiful just by the smile in his eyes when we kiss. And it was time to shake it off.
But not without first acknowledging that maybe that was quite a few appointments for a week’s time..
When we got in the car to head to the doctor, the Christian station was playing one of my favorite songs, “Fix My Eyes,” by For King & Country.
There are no coincidences.
And as we sang along, I looked in the rear-view mirror.
“Fix My Eyes”
“Hit rewind
Click delete
Stand face to face with the younger me
All of the mistakes
All of the heartbreak
Here’s what I’d do differently
I’d love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on youI learned the lines and talked the talk (everybody knows that, everybody knows that)
But the road less traveled is hard to walk (everybody knows that, everybody knows)
It takes a soldier
Who knows his orders
To walk the walk I’m supposed to walkAnd love like I’m not scared
Give when it’s not fair
Live life for another
Take time for a brother
Fight for the weak ones
Speak out for freedom
Find faith in the battle
Stand tall but above it all
Fix my eyes on you….”
Click the image to hear the song…
We spent Friday looking for sites for a fund-raiser for “Rare Disease Day 2015.” We met a lovely woman who was surprised we weren’t raising money for us specifically. We explained that we were grateful. I feel well enough to work. We have good medical coverage. There are so many not as fortunate.
When it gets to be too much, I know to fix my eyes on things far beyond the mirror. I have a greater purpose right in my own house. And WE have a greater purpose.
Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.
It’s June 12th, and that is definitely a new record for me.
In my old life clothes got changed systematically in April, and early October. Jackets got washed, shoes got put away.
That was my old life. I don’t remember it much.
I don’t really have a big closet. The spring shoes are upstairs in the hallway. All over the floor. I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.
Thankfully, Mother Nature seems confused about the season. That is buying me some time.
In my old life, nothing was really on the floor – ever.
We went to the doctor today. Shocking news really, I know.
We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”
EPIC FAIL.
What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit. (And I’m not much about fashion – so you know it was a REALLY bad suit.)
I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.
I brought the 3 page synopsis of tests, hospitalizations, and medications.
I brought the 3 INCH binder full of lab tests and pathology reports.
I brought the CD of the neck sonogram.
She glanced at her most recent blood work. She told me her TSH was too high. She told me she needed more Synthroid. She told me her current team was just fine. Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she. Feel like a leper much?
I asked all sorts of questions. I asked about T3, and potential problems with synthetic absorption. I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12. I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)
“You’re very smart,” she tells me. “You know a lot,” she says. Yet, she deflects my questions like a goalie with a hockey puck.
News flash. I don’t need stroking – just answers.
But I watch my tongue. And I watch my tone, because my daughter is watching my every move, my body language, my attitude. She is using my response to gauge whether she needs to be uptight.
I asked what was the upper limit for synthroid. I was told there was none. I was told that the dose would just continue to be increased. I was told she would likely reach .200 mcg. I expressed concern. I was told not to worry. The body only absorbs a percentage of the synthetics. Um, that would be the point of my worry. She doesn’t have a good history of secreting junk.
I got a lesson on the pituitary and the up and down regulation of TSH. I was told when to dose the medicine. I reminded her I have been on thyroid replacement for 27 years.
She asked me if she had answered all my questions. In my old life I might have politely said, “yes.” But, this is not my old life. I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.” Then we left.
In my old life things were neater, and more orderly in every aspect. Sometimes I miss the order. But not for long. There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.
She woke this morning feeling like real crap. Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday. She hurts. She is mellow. She has fun with the kids, but she’s not herself.
Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.
I pushed her today to start making dates with friends for the summer. Her friend’s parents must think I am weird.
It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons. And since we have so many appointments, I want to start with the friend time – NOW.
We live in the middle of New York City. One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this. Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck. And then, back to see the resident of her endocrinologist in July. (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)
Life is not ours to plan. But, we have to try to schedule the fun stuff before the days get away.
We RSVP while holding our breath.
There is more “One day at a time…” than I have ever known.
Maybe there will be some time to get those snow boots away. In the mean time, if you do stop by- don’t judge the hallway. Or the closet. Or the dog fur.
I took a walk yesterday, and another one today. I listened to music. It’s a slow process, but I am working on my emotional health.
It seems to be the only thing I can control.
I am working on those foundation stones for Meghan’s bridge.
And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry. I know exactly where they are.
There is something about sitting in a room full of pediatric cancer patients that numbs you, amazes you, and astounds you all at the same time.
There was a time when the little superheroes, the miracles walking around us, and the significance of it all may have gotten past Meghan.
She is older now. More weathered at 10 than she should be. She misses nothing. And to a child who has heard the word “cancer” spoken to her, around her, and beside her, her entire young life, she is acutely aware of its presence in the world.
With Cowden’s Syndrome comes cancer conversations. Is a little fancier when you describe a “PTEN mutation, as causing benign and malignant tumor growth,” but the meaning is the same.
Anyone can get cancer. At any time. And certainly it’s almost unlikely that any of the children we saw today have our “Cowden’s Syndrome”
However since Cowden’s Syndrome, and cancer become so closely married – it is hard to consider one without the other, and days like today are especially draining on both of us.
We left the house at 8AM, and sat in traffic before arriving at our destination, (a route Google Maps tells me is 20.5 miles)at 9:40 – 10 minutes late for our appointment. We then sat a good deal more, until almost 10:40, with plenty (read way too much) time to observe.
The facility is clean, and neat and tries to be festive. Children were celebrating Cinco de Mao among chemo pumps, bald heads and IVs. I watch and try to think nothing. Because it is fortunately IMPOSSIBLE for me to know how they feel, or what they are going through. But, an adjacent conversation involving a thin, beautiful, bald 5th grade girl and her dress for the dance was difficult to avoid completely.
We were met with the familiar and friendly surgeon who wasted little time before examining Meghan’s neck. He felt and thought and asked questions. “Has she been sick, any fever, trouble eating…?
“No, no, no.”
“Well, I don’t think there is a problem. I think it is probably OK. But just to be sure we’ll have you come back in 2 weeks. If it’s not gone we will scan it then. Oh, and you should see why her salivary gland is enlarged. It’s not just the lymph node.”
“With whom would I check that? Because for 6 months I have been talking about incessant throat clearing and all I get are theories. The last ENT told me to see a GI. Have you ever heard them laugh when you bring in a 5 foot 2 100 pound 10-year-old? I have. Any suggestions?”
Silence.
“Ok then, we will get you set up with an appointment 2 weeks from today.”
I had come in hoping for an all clear, or perhaps a 3 month review. 2 weeks had its pros and cons, and Meghan and I weighed them, silently and independently as we headed back to the elevator.
We arrived home at 12:20. Four and a half hours. Insanity.
This afternoon I was stressed. Over nonsense. When I am anxious I have an incredible need to control nonsense. I have been stressed a lot. I need a new outlet. This one is making me not so much fun to be around.
I heard myself today. My tone, my body language. All so negative. Not like me, and not the person I strive to be.
I was brought back on track by my own superhero. Only the strongest can share what’s on their mind and in their heart. That’s why I love her so.
Wise beyond her years. Worried about things she should never even have to think about. Yet still able to find the simple beauty in the world around her.
I took a “time out” tonight to regroup. She nestled up with Daddy. Warms my heart to see her in my bed.
My nighttime prayers include the many who had their own medical adventures today, and my girl. That she may know the joys of childhood… and for me, that I will remember to enjoy watching before they pass me by.
Today, the Borough President came to our school about a 4th Grade reading program, and was so interested in Meghan’s story he took the time to talk to her. She was so thrilled by his genuine nature, and his true interest in her. Not too shabby of a smile for a kid just 2 weeks post op from a complete thyroidectomy!
Meghan chatting with Borough President Oddo!
Today, Meghan addressed the school about what it was like to live with a Rare Disease. She spoke eloquently and passionately. The students were phenomenal. She was exceptionally BRAVE.
This is her speech.
Living with Cowden’s Syndrome
Every day I have pain. Cowden’s is a Rare Disease that never gives you a break and always keeps you on your toes. Cowden’s is a blessing and a curse. I am grateful to Cowden’s, for it has made me who I am today. Cowden’s is also a curse, to have to go through what I do. I DON’T want others to have to do what I do. NO ONE should have to endure the countless doctor’s appointments, tests, hospitalizations, and surgeries that a person with Cowden’s Syndrome has to endure.
Today is February 28th. To many people today is just Friday, but to others, February 28th is Rare Disease Day. Rare Disease Day is to raise awareness about Rare Diseases world wide. Rare Diseases are an issue. 50 percent of Rare Diseases affect children. 300 million of the earth’s population has a Rare Disease. There are over 7,000 Rare Diseases and less than 400 treatments with, currently NO CURES! With Rare Diseases you need all different types of treatments. Treatments and surgeries can be helpful, but they don’t fix the problem permanently. Rare Diseases aren’t contagious. If someone in your family, or a friend of yours, has a Rare Disease, that doesn’t mean that you will have one.
We chose the movie BRAVE for tonight’s movie night on purpose. When you have a Rare Disease you have to be brave. Individuality is very important. No matter who you are, EMBRACE it and be BRAVE. Be an individual. Being BRAVE is about not being scared to be you. Don’t just follow other people. BE a leader, be BRAVE! You are who you are so why not recognize that and make the best of it? Explore and be BRAVE.
Until September of 2011 I did not know I had this Rare Disease, or ANY Rare Disease. All I knew was that my body was far from NORMAL. All I could do was be BRAVE. Every single second of every single day all I CAN do is be BRAVE. You never know what is lurking around the corner. All you can do is prepare yourself and stand up tall against all odds. All you can do is be BRAVE.
Once I learned that I had Cowden’s Syndrome I researched it. It means that my PTEN gene is broken. Your body is made up of all sorts of G-E-N-E-S not J-E-A-N-S like the ones you wear. PTEN is the gene in your body that keeps your body from growing tumors. With a broken PTEN gene, I learned that my body was more likely than other people’s to grow tumors, and that sometimes those tumors could be cancer. Imagine how scared I was, and how I needed to be BRAVE. Cowden’s Syndrome has different versions of the same symptoms on each person. 1 in 200,000 people have Cowden’s Syndrome. Another thing I thought was interesting was that 80 percent of rare diseases are from genetic origin.
I’ve always wanted something to represent me. I knew there was the gold ribbon for Childhood Cancer, the pink ribbon for Breast Cancer, so on and so on. I NEEDED something to represent me. That is why I have this first of a kind denim ribbon necklace. It is the first of its mold and has a ONE OF A KIND inscription on the back. My mom and dad have one too. The support I get from my family is incredibly inspiring. I REALLY want to make more people aware, as you can see.
All you can do with Rare Diseases can do is be BRAVE. Look danger, sadness, disappointments, and diagnoses in the face. Be prepared. Don’t let it break you. For each and every Rare Disease, stand up to the challenges it brings, and don’t let them break you. Let it make you stronger.
When I’m here at school I put on a mask. A mask of happiness, of making people think that I can brush everything away. No one knows that under that mask is a girl with the weight of the world on her shoulders. All I can do is be BRAVE. I cannot do what everyone else can. I struggle to fit in and find acceptance in the world. All I can rely on to make me smile and laugh are my friends. They are part of the reason that I can keep up the mask. I will never let anyone know what I think. That is who I am and what I do. NEVER judge someone by what they look on the outside. I am a perfect example of this.
Be KIND, be AWARE, Rare Diseases are EVERYWHERE!
And then – as if I wasn’t proud enough…. she put this video together all by herself….
Such a proud Mom! Spreading the word…. LOVE this kid.
I like the word “probably” a lot more when it is favorable. Although sometimes I feel like life is engulfed in ‘probably,’ ‘maybe,’ ‘most likely,’ or ‘I’m not sure.’
Today “probably” means it’s most likely migraines causing her agony.
And with some explanation that migraines can level even the strongest adults, she started to feel a bit better.
There was a thorough exam, and a kind, intelligent neurologist. He knew what Cowden’s Syndrome was, complimented my list of doctors, and even called the oncologist to talk about treatment options.
So my girl, whose pain had actually radiated down and into her shoulders was looking finally at an answer.
I understand her cautious suspicion, as things have often not gone according to plan.
However, this diagnosis actually makes sense. And having lived through my share of migraines, it even explains the level of pain.
So he is 90% sure.
Those are good odds.
Except there needs to be an MRI just to be 100% sure.
And MRI, with gadolinium. Again.
Three steps forward. Two steps back.
But once the MRI is done, and clean, and we can all breathe again, then its onward.
The medicine started tonight. It will be every night. Relief is long overdue.
I said yes, not quite sure exactly what would be involved, but knowing that it was a rare opportunity to speak to Cowden’s Syndrome awareness.
Tonight was the night.
What an amazing show. I am so glad to be familiar with it now, and you should check it out!
Somehow the words came pouring out. It’s amazing what speaking from the heart can do. I can only hope that someone tonight knows what they didn’t know before.
I find there to be no coincidences in life.
After my segment in the “Survivor Spotlight,” the show focused on toxicity and cancer. Well even though I just listened in to THAT part of the show, I was so in tune to what they were saying.
(My part of the show starts at about 11 minutes, and ends around 30 – I talk too much! But I managed to mention my friends at Life with Cowden’s, PTEN world, and The Global Genes Project!)
Near as I can figure these days, breathing increases your cancer risk. But, taking crappy care of your body, eating junky food, and generally being careless, puts you at a greater risk than if you are careful.
There is nothing we can do, especially those of us with genetic predispositions to cancer, to fully protect us. But we can do what we can to help.
There is no guarantee I won’t get hit by a car, but if I stand in the middle of the street I greatly increase my chances.
People ask why we devote so much of our time, energy and budget into healthy food.
Genetics are not on our side. But we can fill our bodies with healthy, pure, organic superfood.
These days the core of the nutrition in our home comes from Isagenix. It does not claim to prevent, treat or cure any disease, but If you haven’t looked yet – now is a good time.
A catch-22 is a paradoxical situation from which an individual cannot escape because of contradictory rules.[1][2] Catch-22s often result from rules, regulations, or procedures that an individual is subject to but has no control over.
-Wikipedia
You know a person could go crazy trying to keep themselves free from toxins. These days it seems to be an all consuming, and virtually impossible task. Sometimes I wish I knew a lot less. Sometimes maybe ignorance is bliss. And cheaper. And a LOT less stressful.
But then again, I think my girl would be a whole lot worse off. And therein lies the “Catch-22.”
Meghan has been seen by a “biomedical specialist,” (insert voodoo, witchcraft, flawed medicine – whatever makes you happy) since she was about 2.
Back in the summer of 2005 things were definitely NOT ok here. I knew it deep down where that Mommy gut nags at you. We had speech therapy. We had occupational therapy. And we had a child who had already been hospitalized twice with chronic viral infections, was not sleeping, was not playing, was not talking, and was most of the time flat out uncomfortable. We also had a vast array of doctors who dutifully collected my Co-Pays and did absolutely nothing but tell me they “didn’t know.”
So, I read. I researched. I altered her diet. I added some key supplements. I started to see results – but not enough.
This doctor, whose office we just left a few hours ago – over 8 years since our initial meeting- got to know Meghan. He told us he could help. And he has.
We have worked together through dietary interventions. Supplements. IV treatments. Countless blood tests. And, when we needed it – Xrays, and guidance towards the diagnosis of “milk of calcium” of the gall bladder at age 3.5
He has been my sounding board through lots of ups and downs. I have never, and will never take any one person’s word on what I should do for my daughter – doctor or not – but he is one of the opinions I value highly.
He had the gumption to prescribe digestive enzymes after YEARS of horrendous stool and horrific stomach aches. “We don’t need to biopsy the pancreas. Sometimes we just need to use our heads to see what works.” Not too often these days will you find any medical professional with that confidence or drive to do what is right.
Through the years we have visited his office at least 3 times a year for lengthy consultations. He has suggested countless things to help aid Meghan’s immune system, her pain, her tendency towards chronic fatigue. I have listened to many, and ignored a few. Conversations have evolved over the years as we have each stayed up to date on current research.
The initial diagnosis of Cowden’s Syndrome seemed to bother him a great deal. He was bothered by the ramifications of the syndrome, but also by the fact that there was no way this was “all of it.” Meghan “doesn’t fit in a box,” he would always tell me. Never let them try to put her in one.
And, perhaps truer words have not been spoken. As we have navigated the world of Cowden’s Syndrome, I have been acutely aware that there is still “something else.” But, since we are yet to put our finger on it – we continue doing the best we can.
Cowden’s Syndrome involves screening tests. Regularly. For cancer, and vascular malformations that can form anywhere at any time. X-Rays and CT scans are discouraged because of radiation exposure and a fear that cells can be “tripped.” So MRI is the test of choice. MRI with contrast that is. Gadolinium to be exact.
I’ll get back to why that is important in a bit.
We have spent the last 2 years especially, (but really the last 5 or so for Meghan considering the AVM in her knee was discovered LONG before the Cowden’s Syndrome diagnosis) being scanned. In July Meghan had an MRI ordeal that involved 4,000 images, 3 hours, 2 tubes, and 3 doses of contrast dye.
We have spent the last few years dealing with a rapidly growing child whose pains seemed to be increasing exponentially. We have gone from treating with Advil to treating with 200 mg a day of Celebrex.
We have spent the last few years trying to help her stay calm- only to watch her anxiety mount. In September she was diagnosed with Alopecia Areata– an autoimmune condition that causes hair loss. Fortunately for us it seems to be contained to a small area, but it is an unnerving diagnosis still the same.
We understand the role of autoimmune disease and stress, and toxins. We understand the role that stress can play on a genetic mutation of the PTEN (tumor suppressor) gene. We understand that there is external and internal stress.
We do what we can to control stress on the body. We make sure she has “down time.” We try to help her get rest. We got her involved in swimming, a sport she loves. We make sure she eats a largely organic diet free of the foods she can not tolerate like gluten, dairy and soy. We eliminated almost without exception preservatives and dyes. We bought new pots and threw out the plastic plates we used to use sometimes.
We started giving her ISAGENIX, the organic superfood that is as pure as I seem to be able to find.
And even at that – there is an awareness that we can NOT control it all. There is an awareness that by whatever mechanism that is broken, our girl does NOT detoxify properly. We are aware of toxins in the air, in our soil, and even in our filtered water. We are aware that her body is confused by this world we live in, by the GMOs that are even hidden in her organic diet.
We run, like Indiana Jones, out in front of the boulder, in constant motion. One stride ahead…
Chelation
Chelation therapy is a proven treatment for lead poisoning and poisoning from other heavy metals.
The term has been spoken over and over again by the “bio medical doctor.” Chelation is the concept I found every single excuse to overlook and ignore. The idea shook me to my core.
The turning point – Alopecia Areata and the words I had heard him say to me for years, “She is primed to become an autoimmune train wreck. Let’s try to clean her out.”
She went for her first treatment last month. After the treatment there is an 8 hour urine test to measure the toxic metals excreted.
She went for her second treatment today and I got to look at the printout of last month’s urine analysis. So, even as I held her, and she wailed in pain, and two veins rolled before they got a good one, my resolve was strong.
There are several metals that were high. None of that made me happy. But the most disconcerting of all…
The reference range for that MRI contrast dye Gadolinium I mentioned earlier is <0.4. Her output was 190. No I am not forgetting a decimal.
Gadolinium. Necessary for the cancer and vascular screenings set to be part of her life forever. Except apparently her body can’t seem to excrete it.
beatingcowdens 