It was almost 8:40 last night as I drove down Grymes Hill with Meghan. She hadn’t been home since we left for school at 7:20 that morning. She was facing a shower, dinner, homework, and a later than normal bedtime. She had spent the afternoon registering for her after school drama program, and had spent the last two and a quarter hours in some combination of intense exercise- on land and in the water. She was exhausted and it was evident in her face. But, not it her voice or her mannerisms.
“I know I’ve got you running all over the place Mom, and I know it’s a lot of hours. But, I have to tell you that I LOVE it.”
I couldn’t help but smile in spite of myself. We all want for our children to do what they love. And here she was; registered for drama, swimming 4 days a week, pushing the herself at school, enjoying church youth group, and planning a fundraiser for February.
She feels rotten. A lot. But she pushes. And I have to believe that is how we have to live this syndrome – this life. Maybe I’m a good influence after all.
She plays in pain. Constantly.
She is always recovering from or anticipating something. But instead of waiting for the storm to pass…
She’s clearly dancing in the rain.
We have our spats. We’re supposed to. But, we balance each other too.
We keep each other motivated. We keep each other grounded. Her diagnosis still makes me physically ill. But, it does not, can not, and will not define her. I’m convinced.
Do what you love I tell her. Do what makes you happy. And she does.
And I do too. Watching her for hours, on the bench, in the basement by the pool makes me happy. Watching her on stage makes me happy. Watching her persevere makes me proud.
In school I count children. Religiously. Especially in September. I count them in, and out.
I count pencils, to pacify my OCD. 12 to a table.
I count days until appointments, special occasions, and vacations. I love numbers.
I have a tendency to remember addresses, phone numbers, anniversaries and dates.
So it’s a really big deal in my mind when I realize I am losing count of Meghan’s surgical procedures.
I keep a list in my bag, that I update often. I have a 16 gig flash drive with a history spanning 12 years in that same ziploc bag in my purse. But, this year. Well, this year has been a little more wild than usual.
And every time I say it, I find the old saying, “You ain’t seen nothing yet..” coming true. But, every year I sit at an IEP meeting talking about discontinuing some services, and we always say, “When she goes a year with no surgery…”
Good thing I’m not holding my breath.
See I wrote, and I think I blogged, TWICE in the last week, that the hand surgery was Meghan’s 13th surgery. Except it wasn’t. It was the 14th.
And maybe, when I lose count, it’s time to stop counting. Because they are all starting to blur together.
2004- Epigastric hernia surgery
2007 – Gall Bladder Removed
2008 Tonsils and adenoids removed
2008 Back mass lipoma
2009 Oral “fibrous polyp”
2009 Embolization (internal) AVM right knee
2010 Embolization (internal) AVM right knee
2011 Direct Stick Embolization AVM right knee
2012 Direct Stick Embolization AVM right knee
2013 excision of mass from right palm
2014 complete thyroidectomy
Nov. 2014 emergency (direct stick) embolization AVM right knee
May 2015 Arthroscopic Surgery – Right knee
August 2015 Excision of vascular lesion from left palm
But, just as I think I should stop counting. Just as I think that this is “normal,” or that these procedures are somehow “minor,” I realize the ridiculous nature of that train of thought.
THIS IS NOT NORMAL. THIS IS COWDEN’S SYNDROME. And, BEATINGCOWDENS is what we do, but it is far from NORMAL!
This week, Meghan had a fever blister break out before her surgery. Maybe nerves, maybe coincidence, maybe a medication screw up. Whatever. It reminded me again, that her body is taxed. It is tired. I have been hunting through past blood work, another plan in place to try to deal with chronically low IgG levels.
She spent the 48 hours after the “minor” hand surgery with high fever and frightening headaches.
We had to postpone the follow-up to the “real” 13th surgery Thursday morning because she could not get into the car.
No surgery is minor. And we run the risk of confusing things we are used to with things that are not significant. And that is a dangerous road.
It is so important to keep validated, as an adolescent or as an adult. When we trivialize procedures, intentionally or not, we invalidate the patient. Cowden’s Syndrome patients will undergo insane numbers of procedures, surgeries, hospitalizations and testing in their lives. They all matter. Because we matter. And while we are forever grateful every time a surgery is smooth, benign, and uncomplicated, we are all a little more rattled than we were before.
So LOSING COUNT, is not acceptable. It somehow trivializes the nature of what goes on here.
We didn’t get to the beach this summer. We did get to Disney. Thank goodness. Because pretty much everything else we did involved traffic, a co-pay and a parking garage.
We are blessed. We are grateful. We are in tune to the tragedies and horrors around us. But, sometimes it gets lonely.
We miss barbeques and parties. We cancel at the last-minute. We rarely socialize. It’s not because we don’t want to. It’s because things change so quickly we can not keep up. And then it looks like we don’t want to. But, it’s just not true.
We are eternally grateful to the people who reach out. Just for a minute. Because it matters.
If you’re reading this because you know someone with Cowden’s or a similar syndrome, my advice to you is reach out. Text. Call. Email. It’s not about money, or grand gestures. It’s the 5 minutes you spend that will truly aid in the recovery process.
Because recovery is essential. Number 15 is just around the corner. And even though that’s a “regular” surgery, I bet not many of us have had our wisdom teeth extracted at the age of 12.
I don’t actually fit the “stereotype” of a middle child, as I was a younger sibling to my sister, (three years older) for 15 years, before my little sister and brother came along a few months apart.
I got the live the life of a “younger” and then later got to have some fun times, and responsibility as an “older.”
It worked.
On the other hand, this journey with this “invisible illness” we call “Cowden’s Syndrome” isn’t quite as smooth. It has to work, but right now it’s the “typical” middle child. It’s having a tough time fitting in where it belongs. Actually it is definitively trying to take over, but either getting ignored, or getting too much attention for all the wrong things.
In February of 2014 there was the complete removal of her thyroid.
In May of 2014 there was a week in the hospital from complications from the medicine that was controlling the AVM.
In November of 2014, almost on schedule, the AVM bled and required emergency surgery.
In February 2015 I addressed another vein gone awry in my leg.
In May 2015 there was the arthroscopy for the AVM knee to quartarize some bleeding.
In August, on the 25th, there will be her second-hand surgery in two years to try to stay ahead of the vascular malformations now forming in her palms. That was an unintended result of Monday’s visit to the hand surgeon.
There are a list of appointments to make, and bills to settle, and I seem to be doing nothing more than surviving.
More blood tomorrow. An Abdominal ultrasound Friday.
The summer is not for carefree adventures. The summer is for doctors. I hate that. But, its true.
And as we met with the oral surgeon today who perused her multiple page medical history, his cavalier remark, “She looks good,” should have pleased me. But, if I may be frank, it pissed me off.
Not because she doesn’t look good. She’s stunning, and tall and polite and well-mannered, and has a beautiful smile. But that is NOT the point.
The point is he never mentioned anything about the medical history, and in our world, being validated matters. Someone needs to say its unusual (read unfair) for an (almost) 12-year-old to be discussing the removal of her wisdom teeth. And while this may have nothing to do with Cowden’s (although I’ve come to know EVERYTHING unusual has SOMETHING to do with Cowden’s,) it is still just grossly unfair. More unfair is that this is ALREADY her second stint in the chair of an oral surgeon, as a mass was removed from her gums some 5 years ago.
We remain “stuck in the middle.”
Again, I have the “healthiest looking sick kid.”
My kid who still ices her knee, and needs to walk a lap or two during swim practice, but still makes practice. That kid will spend a week in a wheelchair at Disney, as she is not to walk more than about 1/2 mile consecutively. The child who still hasn’t gotten clearance from her last knee surgery. Clearly, she doesn’t “look” sick, but the stares and judgment are inevitable. And to some extent I get it. Invisible illness is hard to understand.
It is during this week I feel most “stuck in the middle.” I am so grateful the accessibility issues are limited. I do not fit in with the parents of wheelchair bound children. Although, it is a necessary tool to allow us a much-needed vacation. But, what is not limited are the “invisible” elements of her condition. The chronic surgeries, the doctor visits, the traffic, the blood work, the scans, the inability to just “go”; to the museum, the beach, the park, or anywhere because it hurts to walk too long, the isolation from friends who have no limitations, the poking, the anxiety – well, they never ever go away.
We’ve learned not to talk about them much. But, they are always there. Hers and mine.
She learns to appreciate what she can do, and acknowledge what she can’t. Begrudgingly.
My kid who holds it together through all things, and has grit and determination I marvel at, will act in her summer production at school.
She learns to use the anxiety as a tool.
She masters her emotions. She is the boss of her body. She amazes me.
And on September 18th when she gets her bottom two wisdom teeth removed, the course of action will be no different.
They will never know the powerhouse of a young lady that just left their chair. Until she comes back for the other two a few months later.
“Stuck In The Middle With You” (originally by Stealers Wheel)
…Yes, I’m stuck in the middle with you,
And I’m wondering what it is I should do
It’s so hard to keep this smile from my face,
Losing control, and I’m all over the place
Clowns to left of me, jokers to the right,
Here I am, stuck in the middle with you…
** This blog was written over 2 days. The BLUE type was written today, Sunday July 19th, and the BLACK type is from Saturday, July 18th.**
I’ve been asked by people who read this blog, several lately, “How do you stay so UP, all the time?” Sometimes I find that question to be the biggest irony. I struggle often, and deeply. The whole purpose of this blog is a candid description of our journey with this beast called “Cowden’s Syndrome.” Let none of you ever imagine for a minute that we are “UP” all the time, cause it’s just not true.
But, as difficult of a road as this is, I have tried always to remain acutely aware of the connections we have to others, and the never-ending reality that “everyone has something.”
So often my writing is where I work it out. I type. I think. I read and reread. And, cheaper than a therapy session, I am able to tease away the negativity and find the focus I need. And when I am unsure, and it just doesn’t sound right. I wait. Just like I advise people to think before they speak, “Is it true? Is it kind? Is it necessary?” I try to think before I publish. So last night I sat wrestling with this. And I never hit publish.
From “Corner of the Sky,” Pippin soundtrack
Everything has its season Everything has its time Show me a reason and I’ll soon show you a rhyme Cats fit on the windowsill Children fit in the snow So why do I feel I don’t fit in anywhere I go?
So again we hear, “That’s really unusual.” “I’ve never seen that before.” “Typically…” And I chuckle, in frustration and in the irony of it all.
This time it was at the dentist. Meghan felt something in the back of her mouth. An X-ray revealed an impacted wisdom tooth. She’ll be 12 next month. The consult with the oral surgeon is on the 29th, two days after she meets with the hand surgeon (again) to discuss the vascular lesion on her palm. Her abdominal sonogram to screen for Cowden’s related issues is on July 31st.
This week someone will call me with the name of a foot and ankle surgeon, suggested by the orthopedist who did her knee surgery based on her foot pain and size discrepancy. Who really knows where that will lead?
I’ve got a bone density test set for Monday, to determine if 30 years of thyroid medication, and early menopause forced on by a hysterectomy at 38, has depleted my bone density. My next phone call needs to be to the vascular surgeon. He had some success with the right leg in February. The left leg is in dire need now. That is as soon as I can settle the errors on the anesthesia bill.
The number for the “Skin Cancer Screening Clinic” at NYU sits on my desk. Meghan and I both need to be scheduled.
I just finished completing the papers for her medication for the 2015-2016 school year. They are copied, one is filed, and one is set to be mailed Monday.
We’ve started to discuss, the two of us, dates for the 2016 “Jeans for Rare Genes” fundraiser. We’ve got some neat ideas. It passes the time.
For the second year in a row, Meghan was nominated for the Global Genes Project “Teen Advocacy Award,” and although she did not win, it is an incredible honor to be making a noticeable difference at such a young age. One day we will take her to California for the Global Genes Advocacy Summit. One day her vision of a denim ribbon necklace will come to fruition. One day. But not this year. Because this year I am trying to schedule vascular surgery that weekend. Because we have to prioritize. Right?
I have set some fitness goals this summer. I am setting a 10,000 step a day minimum. I am aiming for at least 5 miles a day. My dog is in the cross-fire of this goal. She is my walking partner. Because she likes to walk – but maybe not quite that far- and she can’t really say no.
I am always struck by the ironies in life. I am stronger than I have been in years. In many ways I am healthier. I have found Isagenix, and I feel better. Stronger. More resilient. More able to cope with life’s obstacles.
Which is good. Because life has a tendency to be really isolating.
I suppose we all feel that way sometimes. And many of us feel that way most of the time. But, sometimes that is little consolation.
I am grateful not to fit in with the Moms of really sick kids. I don’t envy them at all.
But, I can’t find a spot with the Moms of mostly healthy kids either. Unless I don’t talk much.
Cause talking about a “healthy sick kid” is confusing, and frankly more than most people can, or choose to process.
I want to spend time with people my own age. I have lots and lots of people I like, but not too many friends to get together with. Sometimes I wonder what it would be like to just get together. And chat. Maybe over lunch, or dinner, or drinks. Or maybe have a barbecue, or even a night with other couples. Where everyone socializes. And no one is overly worried about anything. But we end up declining the few invitation we get because something always seems to be in the way.
This life is isolating. The constant doctor’s appointments, surgeries, food allergies, medical bills, prescription drug battles, mobility restrictions, have made us difficult to “hang out” with. And I get it. And it doesn’t make me mad. Because it is what it needs to be right now. And there are friends I talk to and text with.
Do not misinterpret this as a need or a desire for pity, or sympathy, because it couldn’t be farther from that. What I write here is a simple representation of facts that are. They just are. And maybe one day they won’t be. But, I have already learned not to wish life away, not even the uncomfortable parts.
But on nights like tonight, when two decks on my block are lit up with social gatherings, I find that I long for summer days of freedom. I crave careless, schedule free days. I dream of getting up one morning, and hopping in the car with Meghan and just going somewhere far away from doctors and hospitals.
Just like the curly haired people who wonder about straight hair, I wonder. But, even as I wonder, in my heart I know this journey is taking us somewhere. Somewhere with an end I can not see. There are stops along the way to make us stronger, wiser, and more patient. There are lessons on empathy and compassion to be learned. There are experiences that will turn us into the people we were meant to be. The road is long and winding. Sometimes the climb is tough. But, but the view, when you really stop and look, is amazing…
Rivers belong where they can ramble Eagles belong where they can fly I’ve got to be where my spirit can run free Got to find my corner of the sky…
I ended last night feeling lonely, and lost. The song from Pippin had been in my head all day, resurrected from memories of ages ago. Yet, I couldn’t shake it. Where do I go?
This morning Meghan was well. She woke up well, and early enough to make a two-hour morning swim practice, which she completed. I had time to walk a few miles near the pool. The sun was beautiful, and the air wasn’t quite that warm yet. There were birds singing happily, and flowers to appreciate.
After swim we made it to church. It had been a few weeks since we were able to get ourselves there.
And in the bulletin I was met with a quote,
“I know I cannot enter all you feel
nor bear with you the burden of your pain
I can but offer what my love does give –
The strength of caring, the warmth of one who seeks to understand.
This I do in quiet ways – that on your lonely path you may not walk alone.” – Howard Thurman
There was a basket of rocks where we were instructed to take one to represent us. The rocks were placed in a bowl, and water would surround those rocks symbolizing the love of Christ. Stories were told, personal and biblical, about love and caring for the physically, and emotionally wounded.
We were invited to choose other rocks, to represent people we loved, who had needs weighing heavy on our hearts. As I chose mine my eyes were full of tears. Not of sadness for those people, but of the promise that they are also enveloped in the love of God. My hand was full, I must admit, and I took a few moments to say a prayer over each rock as I placed it in the water. And then, tears of pride, as I saw my daughter had selected her own “rocks” to pray over.
The closing hymn (words and music by Marty Haugen, 1987) began like this;
“Healer of our every ill, light of each tomorrow, give us peace beyond our fear and hope beyond our sorrow… You who know our fears and sadness, grace us with your peace and gladness, spirit of all comfort fill our hearts…”
And the idea that we are here to “Bear one another’s burdens,” permeated my heart.
I am not “UP” by my doing at all. I treat my body well. I treat my mind well. And I allow my soul to be cared for.
My peace comes from the knowledge, the belief, the conviction that we are guided by a loving God. That all things are not mine to know, and that through His grace alone we have the strength to remain,
Sometimes we all want to throw our hands up. Sometimes we want to quit. Sometimes we want to hide in the closet or under the table alone. For a long time. Because EVERYONE HAS SOMETHING….
No one’s life is easy. The trick for me is realizing that and moving on.
Yep, some days I throw a fit right here in my house. Some days I am sad and overwhelmed. Some days I even cry, like here (http://wp.me/p2qi4v-10g)
But, the rule is about 15 minutes. I am allowed to have a pity party for about 15 minutes. (Sometimes that 15 minutes happens again, and again – but not usually.) Because then, I have to put on my big girl panties and make it work.
We play a lot of games of perspective here. We work on looking at things another way. “Flipping it…” so to speak, to try to get through.
The end of school is a crazy time for us. It’s supposed to be a time to rest, and unwind. But, really, it’s just shifting gears. Most of our doctors keep us on a “Six month leash,” so we do our best to schedule one round the very beginning of July. This way if anyone needs anything else there is time before school starts again. The other cycle is distributed around February vacation and school holidays. The only problem with this is it grossly limits the number of ACTUAL holidays there are in our lives. There is a good deal of “Go, go, go…”
Despite our occasional “preteen issues” my daughter is insanely easy to please. She wants to swim. She wants to act. She wants to read. She wants to watch tv. She wants to socialize with children preteens who are nice to be around. She wants to eat good, safe food, (cooked by her father not me!)
What she’d prefer not to do is sit. In the car. On the BQE. On the LIE. In the waiting room. In the exam room. Over, and over and over. Yet, still she handles it gracefully. She packs her own bag with a variety of things to occupy her time, and some snacks too. She really does not complain. (Except maybe if there’s a needle…)
What I try to do is spare her some appointments any chance I get. So when mine come up I try to leave her behind, and that’s what I did yesterday and today.
See, between us, there will be 15 appointments in two weeks, ending this Thursday.
This morning I made my 3rd trip to Manhattan in the last 7 days, but yesterday and today I drove alone. Meghan was tucked away at camp. Happy as could be.
I sat in the car, alone. The 20 or so miles never take less than an hour, so the luxury of satellite radio, and my green tea, (plus and e+Shot when I need it) are all mine to savor as we inch along.
I noticed today I was very calm. This life, this Cowden’s Syndrome life, is overwhelming, monotonous, and sometimes very stressful. But, it’s our life. Not glad by any means, but grateful that this load has been bearable thus far.
Some of our doctors could stand to be replaced, but many are stellar.
We are looked at so carefully all the time, that the chances of us missing something important have drastically decreased.
We have real life conversations, about real life problems, and we handle them with A LOT of humor.
We have a home that is full of love, and a witty, intelligent, young lady growing here.
We have two steady jobs.
We are able to vacation, and enjoy a few extras along the way.
We have become adept at navigating the bumpy road as a unit, not just Meghan and I, but her Dad as well. We are a team of three.
We have found nutritional products that keep us energized and strong as we brave the storms.
We are often dubbed the “healthiest looking sick people.” A comment that always makes me smile.
Some people like to use the word “blessed.” I have some trouble with that. If you are the person amidst terrible tragedy, are you then to feel you are not “blessed?” I may have a few questions for God, but the God I believe in doesn’t work that way.
Grateful– feeling or showing an appreciation of kindness; thankful
Now I do believe that there is always room for gratitude. There is ALWAYS something to be thankful for. For us, there is OFTEN a LOT to be thankful for.
Gratitude is not about always being happy, and life always being perfect.
“Gratitude consists of being more aware of what you have, than what you don’t” – Unknown
Even as we journey daily BEATINGCOWDENS, I am striving for an “attitude of gratitude,” for myself and my own sanity, but also for my daughter, who watches and learns from breath I take.
The awareness that one day we’re not going to walk this earth anymore.
Not exactly dinner conversation, but, for lack of a more gentle way to say it, mortality is everyone’s reality.
We face this reality at different points in our lives. Some are frighteningly young, and others are blissfully old. But, eventually, that awareness either creeps in or hits us like a speeding train. (Figuratively, or course.)
In my opinion, so much of the rest of your life is defined by what you do with that realization, that understanding that there is no promise of tomorrow on this earth.
For me, my solace, my comfort, and my focus, come from my faith. My deeply held belief in God, and that life does not end, merely changes, as we are welcomed into Heaven.
Whatever your own belief, is, your own reality, my hope is that it brings you comfort, solace, and gives your life on this earth purpose.
As a daughter of a cancer survivor (18 years and counting!!) I watched my Mom grapple with her own mortality at an age I consider very young. (young for her, and for me too!) She got it. She found clarity, but it was a few tough months. And even then as close as I was, I knew the significance of what I was watching, but I did not get it, not really.
I like to say my breast cancer was found, “by accident” or “divine intervention,” whichever you prefer. But, the moment in the surgeon’s office, that day in March of 2012 when I became a “survivor” by default, started my own journey with mortality. I was 10 years younger than Mom was at the time of her diagnosis. I had just undergone what I had prepared in my mind to be a “prophylactic” mastectomy to battle astronomical cancer statistics associated with the new diagnosis of a PTEN Mutation called Cowden’s Syndrome, that Meghan and I had received less than 6 months prior. When the word malignant was read, there it was; laying thick in the air for my husband and 8-year-old child to process with me.
And there was reality. Unable to ignore. Cancer had lived within me. Could it live again? Would it? When? Why was I going to be OK when so many others were not? Was I going to really be OK? What if they missed it, something bigger?
I was fortunate. Fortunate in the sense that a double mastectomy removed the encapsulated stage 1 cancer. I needed no treatment, no medication. But, my status had changed. In the eyes of the doctors, I was now an even greater risk. Every single lump and bump would be scrutinized, scanned, poked, prodded, and usually removed. The loss of my uterus and ovaries weeks later were a testament to this new-found realization that I was a risk. A significant risk.
Cowden’s Syndrome is one of those diagnoses that forces you to face down your own mortality at sometimes alarmingly young ages. An internet friend just made a jubilant post today that her youngest was now 10 and cancer free, a title she did not have herself at that tender age. The things we celebrate…
My Cowden’s Syndrome people are known to me mostly through the internet. We live across the country and across the globe. We navigate through different time zones and support each other through scans, scares, surgeries, reconstructions, and cancer. While this syndrome does not manifest itself the same in each of us, there are alarming similarities that make us kindred spirits. There is that “Sword of Damocles” hanging above our heads. There is that constant sense of not knowing, of hyper-vigilance, of bi-annual screenings, and worry. We stare at our own mortality each time we look in the mirror.
We have an extra bond when it connects to our children. A universal acceptance of the unfair nature of these young ones even needing to understand a bit of mortality. We have juggled the questions, inevitable after MRIs, CT scans, and biopsies galore. We have gently answered questions about family, and future, that have no real answers to date. We ache for them. We wish to take it all away. We have some guilt in the knowledge that in most cases this disorder, (whether we knew it or not) was passed from us.
Mortality will bind you, and if you’re not careful it can blind you. That is why there are support groups, for cancer patients, and others who have come close to losing their lives.
This weekend I spent some time in West Virginia with another group of men, bonded by their grapplings with their own mortality some 48 ish years ago in the Vietnam War.
I will protect their privacy here, and tell their story as generically as I can.
I connected with Alan, about 6 weeks after my father died. Dad had earned a Purple Heart in my mind, for an incident that occurred while he was serving in the United States Marine Corps. The award was never granted, and I wanted to pursue it on his behalf. So, I sent some letters to Marines, whose contact information I obtained from a reunion Dad attended in DC in 2006. I wanted to know who remembered him, and his story.
Alan contacted me first, verified my information, remembered the story, and has been in touch with me since.
My Dad, the “Irish Marine”
I sent 20 letters out. EVERY SINGLE MARINE responded to me. EVERY ONE. Whether they knew Dad or not, whether they could help or not, they ALL reached out to express their condolences. Many shared some funny anecdotes. And as hard as I’m sure it was, they all connected with me.
I had heard about the Brotherhood of the Marine Corps. I could not have fathomed the depth of that bond. One after another, they all left me with the same heartfelt sentiment. “You are the daughter of our brother. We will help you always in whatever you need.”
Now, I knew, or at least I could infer that their lives had not been any type of peaches and cream, on the island of Vietnam, or when they returned. My Dad battled his own demons for many years before our relationship began to form. But the offers of these Marines were sincere, and genuine.
Alan proved that to me through regular conversations, and almost heroic efforts to get someone to listen to the story of my Dad’s injuries. In the end, we lost the battle on a technicality. Although “The statements provided clearly establish that your father was injured as a direct result of enemy action, the available information fails to establish that your father was treated by a medical officer…Wounds not requiring treatment by a medical officer at the time of injury do not qualify for the Purple Heart Medal.” The letter was cold. The case was closed.
We lost the Purple Heart but gained so much more.
I was sad, mad, angry and disappointed. But I was so grateful for the Marines who wrote letters of support. I was grieving the fact that my Dad had carried this close to him for so many years, and lived with chronic pain as a result. I wanted this for him, because he never fought for it himself.
And as things go, it was not to be, but Alan did as he promised and remained in constant contact with me. He heard my sobs as I glanced at Dad’s headstone for the first time. His were the comforting words that started my healing.
So, this weekend I headed to West Virginia to thank him myself. I met a group of Vietnam Era Marines, several of whom had served with my father. I watched them together, in awe an amazement. I was welcomed into their group with instant acceptance. And as I sat and watched them laughing together, I noticed the war stories were sparse, and funny when they were told. Surely a contrast to the realities they had faced as young men years ago. But, the bond between them was unbreakable. There indeed was the Brotherhood of the Marines, but there was something else.
Mortality.
They faced it in the most horrendous of ways. They lived it daily. They buried their brothers. They knew their return home was not a guarantee.
And once you’ve faced that kind of life altering lesson in mortality together, you are bonded for life. As Alan said to me, “If you weren’t there, there are no words to describe it, and if you were, there are no words needed.”
I was among a group of people who had faced their own mortality almost a half century ago. And they have a bond that can not be explained. It is amazing.
And among the most amazing to me was the woman I met. She was not local either, but she, like I, had traveled for this celebration. It was not her first time. She had been around for almost 10 years. About 10 years ago the woman, who was an infant when her father died a hero in Vietnam, met the men he served with. She had never met her father, but here were father figures galore ready to embrace her. And they did.
A bit ago her father’s diary surfaced from his time in Vietnam. She shared it with me and the last entry written before he died was about the thought that so many of them must have had daily. His diary ends with, “When will it be me?”
Once you have looked your own mortality square in the eye, you can not walk away the same person.
But, it is up to you what you do with the rest of your life.
As for me, I choose bonding with people who “get it,” be they old friends or new.
I choose focusing on what we can do, not what we can’t.
I will not choose reckless living, but I will daily live with the knowledge that there is no guarantee of tomorrow on this earth.
Whether facing your mortality is something you endured, something you will live with daily, or something you are yet to face, how it changes you is really up to you.
As for us, in this house, we choose to remain focused on
It wasn’t the loud sobbing kind of crying. It was the kind where the tears just run down your cheeks.
And if they’ve been held in there a long time, it’s really, really hard to make them stop.
I cried first when I saw the office, of the Long Island Surgeon, 30 miles, and 2 or more HOURS away from home. As I approached the room my heart sank and a tear fell. It was empty. That’s never a good sign.
Then when I spoke to the less than sensitive receptionist, she said, “The doctor isn’t here today.” Which I had figured out all by myself. But, I checked the schedule on my phone to be sure I was right, and I was. 2:30 June 25th. I left work early. Rushed to let the dogs out. Got Meghan. Braved the Belt Parkway. And, made it in just on time.
“Look,” I showed her the schedule on my phone.
She was grossly unimpressed and contacted the doctors direct secretary. She said she called my cell phone on May 18th and left a message. Clearly the message never got to me, likely the result of a simple dialing error. I even flashed the less than sensitive one, my voicemail log on my phone. “See, no call on the 18th.” She was still unimpressed, and now annoyed as well.
Meghan told me this morning her knee hurt. I haven’t heard that with regularity in a few weeks. She told me on the way to the appointment that she was glad to see the doctor today. She said she feels like her kneecap is shifting again. This was a primary cause of her preoperative pain. I could see the swelling. I just wanted some reassurance.
But, it was not to be. Because to argue about a phone call would have no real helpful answer, because the bottom line was, there was no doctor.
And the tears just started to fall. At first I worked to wipe them away. Then I just let them go.
I was offered a PA, and initially said no. Then I asked Meghan. She said she’d try one.
“The mother asked the patient, and it’s ok to send a PA down,” mocked the less than sensitive one.
YES! I wanted to scream. YES! The MOTHER, asked the PATIENT, because the PATIENT knows her body better than ANYONE. Her age is irrelevant. Her experience wins.
So we waited for the PA.
He examined her knee, and spoke about the swelling, which he said was likely due to “irritation.” REALLY? I was told her right quad has a good deal of muscle atrophy (something our PT noted BEFORE the surgery,) and that she should suspend all activities for a week, ice and elevate, and return in 7 days to see the surgeon. We scheduled for 9:30 AM, so she can miss the second day of camp, only to travel from Long Island to Sloan Kettering for an endocrinology visit, and back home for PT. (Summer vacation? Anyone?)
He saw my tears, and saw a weak, unstable woman. I know he did. And for the first time ever I stopped myself from justifying my tears. I simply told him there were many things involved in my frustration that he did not comprehend. The end.
I am done apologizing for my feelings. And I am done trying to explain sometimes, although not often, I cry out of sheer frustration for the madness that is our lives.
And as we got 2 cups of green tea to go, I cried some more.
I cried for the stupidity of mis-dialed numbers, and for the 4 and a half hours of our lives wasted, again.
I cried because no one really cares. Not really.
I cried as I watched the teen bald from chemo get out of the car. I shed tears of gratitude that it could always be worse.
I shed tears of sadness, for my girl, growing up too fast. Advocating for herself. Standing her ground with doctors. Because she just shouldn’t have to. And I cried for the doctors, who are missing out on a valuable opportunity. They could listen to my young, articulate, “in touch with her body” daughter, and they could learn a lot. Then I cried in desperation at the reality that they don’t want to.
I cried angry tears for the ones who have no regard for Cowden’s Syndrome. Those who don’t understand it, so they ignore it. They skip over it like a child trying to read a story above grade level. Because they have never seen it, they deem it irrelevant, or unnecessary. They don’t know that our ENTIRE treatment plan ALWAYS need to be grounded in the reality that there is Cowden’s Syndrome, and nothing is as it seems to be.
I cried about the summer that should be free of, or light on schedules, polluted by these doctor’s appointments. Necessary to complete in the summer so I can keep my job, and she doesn’t miss too much school. I thought about the week to come, Monday- Manhattan, Tuesday- Long Island, and PT, Thursday Long Island again, then Manhattan from there, and back to Staten Island for PT. And the following week, appointments for me Monday and Tuesday, 5 in 2 days. Meghan on Wednesday, and the dentist… as soon as we can get a Thursday afternoon free.
I cried about HOURS of our lives we will never get back. Ridiculous trips that take 5 times as long as they should.
I cried because I am wasting her childhood with necessary evils. And I hate it. I hate it a lot.
I cried for the isolation and loneliness created by a disease that keeps us both busier than we want to be.
I cried for our friends with this stupid disease and their physical, emotional, medical, family, and life struggles.
Eventually the tears dried into a scream or two. My girl had no idea I have those lungs.
And, as we arrived LATE for PT, I breathed a sigh of relief. Behind the doors of Leaps and Bounds PT, they “get it.” So Meghan works on getting better, physically and emotionally in a place she feels safe.
I booked PT through the summer. I had hoped we wouldn’t need to. Not for any other reason than it adds to a schedule we’d rather not have. So that “doctorless month” we’ve been trying to plan for three years isn’t happening this summer.
“I’m over it Meghan.” I told her as we were driving. “I’m over the whole Cowden’s Syndrome thing.”
And in her infinite wisdom again, “I guess, but without it I wouldn’t be the person I am. I’ve learned a lot…”
And the teacher is the student again.
Tomorrow I will have the tears back in their proper place. Tomorrow. But this is today’s reality, and sometimes that’s OK too. Because regardless – we are
No, she’s not going yet. And actually even the thought that she will truly be college bound only 6 summers from now makes me a bit queasy. But, there will be time to deal with that later, and milestones to cross along the way.
For tonight, we celebrate what we hope will be the first of many college scholarships. While the amount is small, and the $1,000 will likely not even cover the cost of her first semester’s books, the honor is great, and the concept that these things can start now is mind-blowing.
The link below only connects you to the search page, where you would have to put in her name and state to search for “Regional Winners,” but the picture shows a snapshot of the reasons for selection.
The award is held by Kohl’s and paid to her “undergraduate institution” upon enrollment. It sounds so formal. So fancy. So far away.
But, it’s not. And time will fly. I know this.
So I run as much as I can, getting to every doctor, and as many swim practices, and drama sessions as I can. She maintains her really high average with minimal input from home. And I bring the computer to swim practice. So I can write. And stay sane. And cherish the little things, which in fact are DEFINITELY the BIG GIANT things.
Tonight it’s not about being sick. It’s about being well enough to overcome. It’s about determination to persevere. It’s about a desire to make life better for others.
She is talking actively about how she will make next year’s fund raiser better. Her goals. She has some other things in the works too. The brain is always going.
She is steering this ship. I am her happy co-pilot. Along for the ride of my life.
Together we are BEATINGCOWDENS, and we WILL NOT be stopped.
My daughter is a reader. She eats books up. One after another. I have pleaded with her to use the kindle, just to avoid the sheer volume of books in the house. I lack the responsibility to be a good library patron, as my brain can’t remember even one more thing. So the books build up. There are gift cards, and sales. And I never say no to a book. Ever.
Her early childhood teachers nourished a love, no a passion for reading. They gave her the skills to decode, to comprehend, and to find her genre of choice, and her escape. She has needed that escape so often through the years that I find myself grateful for how easily the reading comes to her, and forever grateful to those precious teachers who likely have no idea how deeply they have impacted our existence.
This was a weekend full of homework. It was a culmination of a month that began with being pulled from class for play practice, and continued through her surgery on May 6th, and seven days absent. There are 4 honors classes to maintain, and for a perfectionist at heart, striving to get it all done has been nothing short of horrendous. All the classwork, all the homework, all the projects, every last bit of it to be made up.
And I understand, to some degree, why nothing was forgiven. Why she had to do it all. I have sat in the seat of the teacher for 19 years and the reality is absent or not, sick or not, they are responsible for the curriculum. That didn’t stop me from questioning the VOLUME of work and how it differed drastically from unbelievable to totally reasonable. And it didn’t stop the stress and bitterness of the last few weeks from taking a toll on both of us.
I hate having to be the “heavy” all the time. But, I was the one who had to put the books in her hand days post-op. Still working the anesthesia and narcotic pain relievers out of her system, it was time to get started. Knee elevated and iced, we talked through one subject after another.
Normally she manages all her schoolwork alone, and does it quite well at that, but this month I needed to stay with her. Make sure all the pieces were getting put back in place. Junior high is a step closer to the “real world” I guess, and while there was some awareness of her absence, life marched right on.
She hopped in and tried to catch up at school. She spent the entire week there, despite my knowing by Friday she probably should have been home. Friday night the fears were confirmed, as the classic sore throat began. Honey syrup lasted through the night until the pediatrician was able to declare an ear infection, and likely strep throat. She was cultured. The script was filled, and even as she took dose number one, the books were open.
She worked in my office this weekend, so I could oversee. Laptops side by side. Lots of togetherness. But, one subject at a time, it got done. The notes were put into notebooks, packets were completed, homeworks were stapled together. A science book was created and a newspaper for English class too.
And slowly as the last staple went into the last assignment, a smile crept over the corners of her lips. Her throat felt just so much better, and there was this notion that the weight of the world had been lifted from her shoulders. There may be more to do this week. The year is not over quite yet. But finally, she is all caught up.
So she retreated to her favorite spot on the couch today, alternating between reading, and watching a series on Netflix. She brought me her book, “Gathering Blue” by Lois Lowry. “Hey Mom, listen to this…“Take pride in your pain,” her mother had always told her, “You are stronger than those who have none.”
She offered me a free hug and a smile. Then she was gone, back to her day of much-needed peace, healing and rest.
But, the depth of her quote resonated with me. Not only in amazement that she is able to extract such meaning from the context she reads, but also in the context of today, Memorial Day 2015.
When I started writing this blog it was all about therapy for me. It was all about our journey, and what we were going through. And still, so much of my day, so much of our lives, are consumed by Cowden’s Syndrome, its ravages and its effects, that leaving it out of my writing would be impossible. For while it does not, nor will it ever, own us, or rule us, it had shaped us as we grow through this disease together.
Along this journey we have learned so many lessons. We have learned to have a keener eye to the suffering of others. We have embraced the reality that “everyone has something,” and we have a deep appreciation for the many blessings we have.
I spoke several times today with one of my Dad’s Marines, “Uncle Alan.” I learned about lowering the flag to half mast till noon to remember the fallen, and then raising it to honor the living. I learned about some more Marines, and for a short time I was able to provide an ear for someone whose grief on Memorial Day bears more than general images, but actual names and faces. He speaks with such grace, such poise, and such a deep connection to his “brothers.” I can not help but admire him, even as we have yet to meet.
I put together this picture last night. All four of the veterans I love so dearly, only one of whom is still with us here on earth. My Pop, pictured with my Grandma, almost 70 years ago in the top left. At 95 his wit, compassion, faith, and humor still inspire me.
I took some long walks today. I had a few long talks, with God, and with my Dad, and some others gone too soon. I embraced the beauty around me. I gathered my inner strength to handle whatever life has waiting in the wings.
“Take pride in your pain. You are stronger than those who have none.”
“Standing in the middle of nowhere, Wondering how to begin. Lost between tomorrow and yesterday, Between now and then.And now we’re back where we started, Here we go round again. Day after day I get up and I say I better do it again…”
The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.
But, sometimes it can be hard.
Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”
Knee
Primary Inflammatory (Synovial) Disease of the Knee
Diagnosis
Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.
Injury or Condition
This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.
Cause
The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.
Symptoms
Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.
Treatment
Standard treatment includes:
Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.
Precautions
Important precautions:
Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.
Recovery
As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.
“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.
Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.
We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.
So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”
There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.
I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.
I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.
In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.
I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.
Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…
And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.
I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.
This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.
In desperation I emailed the genetecist who diagnosed us. He responded within an hour.
Dear Mrs. Ortega,
I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.
I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.
Sincerely,
(The angel I need… I hope)
I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.
I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.
“…Where are all the people going? Round and round till we reach the end. One day leading to another, Get up, go out, do it again.
Then it’s back where you started, Here we go round again. Back where you started, Come on do it again…”
beatingcowdens 