Today Daddy and I watched you swim in the Silver Championship meet. It was your first qualifying meet, and it won’t be your last. We find it amazing that you qualified, and for the 100 butterfly no less, in only your second year of swimming. To say we are proud would not even begin to define how we feel.
Today was just another example of how you amaze us, astound us and impress us. I know, parents are supposed to be proud of their kids. I get it. But, when I think of what you go through each moment of every day, I truly am left in awe.
I get that you like swimming because you can feel “normal.” There is no special treatment in the pool and the clock forgives nothing. Cut times are clear and either you make it or you don’t. Believe me, I don’t look to make excuses for anything or anyone. You know that I can be kind of tough. (I get that from Grandma, along with a bark that’s worse than my bite… :-)) But sometimes in those moments when you are your toughest critic you have to allow yourself the same forgiveness your warm heart offers to others without hesitation.
Living with Cowden’s Syndrome is a tenuous balancing act. To stay on top of things the way you do takes intense effort. I think most people would be physically and emotionally exhausted to live your yesterday – let alone your every day.
Last night when your back gave out, and the pain was too intense for me to even touch you, I gave you every out. I gave you every excuse not to swim today. You wouldn’t hear of it. Your hips, the exact point you need your force to kick for your favorite butterfly were tender to even the gentlest touch. It took you hours to rest because your body allows nothing to contend with the pain. So I held your hand as you wiggled and squirmed for hours. I reminded you I loved you as you desperately tried to rest. I stroked your head when you finally passed out from exhaustion. And I was glad the lights were off to hide the tears that stained my face. Tears, not of pity, but of grueling agony of watching my dearest love suffer some more. I knew as I laid there it was unfair. That your knee was still hurting too, and now your back. I knew I made no sense for all this to be coming the night before something you wanted so badly.
That defines your life. Sometimes the hits are small and consistent. Sometimes they come out of nowhere, but you just keep going. You just keep fighting. And truth be told, you inspire me to do the same.
Yesterday we went to look at shoes. You’ve been complaining for months that your left sock is tight. The orthopedist measured your feet and acknowledged the 1cm difference between them. But, I don’t think either of us took in the reality until we were in the shoe store and saw this.
Left FootRight foot (AVM leg)
Another realization that we needed to go about things a different way. So we picked out your shoes, ASICS GT 2000 3 in a 9.5 and a 10.5 and we spoke to the store manager at Dick’s. He will help us. Because we asked. But, I know it got into your head. The wonder about the upcoming surgery in May and the worry about what this AVM is doing to your knee in its spare time. And I HATE not having any answers for you. But I don’t. I can only promise to be with you every single step of the way.
And as I got your pills out yesterday morning, and I helped open your thyroid pills, I thought about the year since you had a complete thyroidectomy. It was just over a year ago you became a thyroid cancer “previvor” when your 19 nodules, including three precancerous ones, came out with your thyroid. It occurred to me for about the 5,000th time this year, that your thyroid is STILL not balanced. We don’t give up. We keep trying. But its you who has to wake up every day and function ok soar, with levels that would leave people 2 and 3 times your age crying in their beds.
So when you took the block today, I took a moment to take it all in. I took a moment to take a good look at you, and I swear I could see the heart of a champion beating in your chest. I saw your green and black suit, and your prescription goggles, but in that moment I saw your raw heart. I saw the feisty determination that gets you through each day.
You might not have seen your best time on the board. But, me, I saw a champion.
The free dictionary defines a champion as:
cham·pi·on
(chăm′pē-ən)
n.
1. Onethatwinsfirstplace or firstprize in a competition.
2. Onethat is clearlysuperior or hastheattributes of a winner:a champion at teaching.
3. An ardentdefender or supporter of a cause or anotherperson:a champion of thehomeless. (or those with rare diseases – Ok I added that)
4. Onewhofights; a warrior.
And while you may not get a first place medal, you have won by walking through the door. You have overcome greater odds than anyone ever really knows.
You take the high road, even when it’s the tougher one to walk. You put other people first. You advocate for those less fortunate. You stand strong for what you believe. You excel in school. You soar at your extra curricular activities, and even within the pain that is relentless, you are an athlete too. You my girl, are a warrior, a true champion. Because as you get older you will come to realize that success is not defined by the highest grades, or the most first place ribbons. Success is defined by your character, by the person you are.
So my girl, when you lay your head on the pillow, know that I admire you with every aspect of my soul. Know that I respect that you daily work to be the best YOU, you can be. Know that YOUR BEST is ALWAYS good enough. Know that your compassion changes people. Know that you, in your own way are making an impact in this world. And most of all, know that you have two parents who love you more than you can possibly understand.
Thank you. For being more than I could have ever hoped for in a daughter. For even though we will hit rocky roads sometimes, we have seen so much, side by side and hand in hand. You my girl, have the heart of a champion, and there is no one I’d rather travel this bumpy road with than you.
World Rare Disease Day is February 28th. Although the actual day is February 29th (the rarest day…)
It is a day of raising awareness across the globe about the 7,000 rare diseases that plague 1 in 10 people.
Our fundraiser has ended for the year. Our checks have been sent. All that’s left for tomorrow is our denim ribbons and our shirts. This day is right up Meghan’s alley. Meghan, whose entire platform has become raising funds and awareness, relishes a day set aside for just that.
Although some days I suspect it would be easier to be an advocate, rather than a patient AND advocate, I suspect am sure that we are more effective advocates BECAUSE we are patients too.
I get that not all diseases, ailments, or medical issues are “RARE.” I also fully understand that that doesn’t make one more important than the other. It’s just that when you have a chronic illness, life is really challenging. When you have a chronic illness BECAUSE of a RARE disease, that really has NO treatment, and definitely NO cure, some days the hill seems insurmountable.
I texted my husband yesterday afternoon to let him know I was going grocery shopping. He told me I was nuts. A week post-op from vascular surgery that put 25 incisions in my right leg, he might have been right. Except he didn’t argue. Timing would not allow him to go.
Grocery shopping in my house is an endeavor. I cross a bridge, and hit not one, but two stores – miles apart before returning home after about a 4 hour round trip. It’s one of the few things easier in the winter – as I don’t have to pack ice!
Why such a journey? Meghan.
Among other things I have learned from my daughter, she has inadvertently schooled her parents on the value of nutrition. Meghan has had food “issues” since birth. Slowly we have played and peeled away and adjusted her diet to be free of Gluten, Casein, and Soy, as well as most dyes and preservatives, and highly acidic foods. She takes digestive enzymes with every meal, and a host of nutritional supplements.
She went from grossly behind in speech/ language to miles ahead. She surpassed extensive sensory issues.
I don’t cook. Ever. But, I shop. And it’s my job to make sure the tools are in place to whip up tasty meals for Meghan, and all of us. My husband never disappoints. He is creative, tasty, almost passionate about Meghan having a culinary experience she will enjoy. He is fantastic.
I shop at Wegmans. And at Whole Foods. Most things Meghan eats are organic, and by default a lot of ours is too. My grocery bill is usually about half a mortgage payment every 3 weeks by the time I feed the dogs too. It is the sole reason we don’t settle all out debt. And it is worth every penny. Nutrition is without a doubt the best investment I have made into the health of my child.
The game changer was the addition of a nutritional cleansing program I have come to trust into her diet. Felix has been using it for almost three years. Meghan and I for about 18 months.
Felix needed to lose weight. But almost as an after effect, after losing 50 pounds, he noticed he felt great. I cautiously introduced the product to Meghan in slow, low doses. Once I was clear she had no reaction, I went all in. For well over a year now she has had a protein shake for breakfast every morning, and since starting school she takes a meal bar for lunch on school days. Over 40 grams of healthy, well-digested protein a day, and this child has done nothing but grow!
Growth spurt? Maybe. But the hair, the skin, the nails, the teeth. She glows of good health. She missed her shake for 2 days a month ago. She had a tough swim and felt awful. Coincidence? Maybe. But she’s not even taking chances any more.
In my house we have a protein shake every morning, and Meghan has some organic, home-made waffles too. We don’t just trust any protein shake. Ours is high in whey protein from “happy cows” in New Zealand. And my girl who can have no dairy at all without severe pain – tolerates these like nothing.
Leaves a mom to wonder- maybe it’s not a “dairy” allergy, as much as a “what’s fed to the cows” allergy?
I could debate processed vs. natural vs. organic all day. What I have here is results.
When you are fighting a rare disease, you need to have the best food in you as possible so you can battle like a champion.
Meghan got out of swim practice tonight. She never gets out of the pool. Her coaches know that. I know that.
“It hurts Mom.”
Dropping stomach, smiling face…
She knows. All of it. Whether I say it or not. She misses nothing the doctors say, and despite my wishes they ALL talk right in front of her.
She has earned the right to sit out. Her coaches know how hard she works. She waited for starts – to get a few in before Sunday’s Silver Championship meet.
On the way to the car she told me she wasn’t sure the knee would hold till May.
I am still waiting for a call back from the orthopedist from last week. Apparently her notes are being typed. He can’t possibly speak to her case without them. He saw 65 patients the day we were there.
The knee is swollen. We will try ice. Hopefully that’s it.
“What if it’s blood?”
“What if it’s not?”
That’s kind of how the conversation went.
Truth is, neither of us know. So we will press on. We have the main plan – the one that lasts till May. And we have the back up. The one where we just yell “plot twist!” and go with whatever happens.
Why did I go grocery shopping last night? For Meghan. For her food. And so she sees me press on. Despite being hurt. Because if I don’t press on through tough times, how can I ask the same of her?
My Mom may not have a “rare disease,” but I learned stubbornness, stamina and work ethic from her.
Rare Disease Day 2015. It’s not so much about “celebrating” as it is about advocacy and awareness.
Because the under diagnosed, the underfunded, and the often ignored – matter. Very much.
I don’t know why at this point I’m not used to it yet. But, as I sit here with my leg elevated recovering from a vein stripping on Thursday, I find it hard to imagine it hasn’t been quite a week since “Jeans for Rare Genes” took place.
Acknowledgements have been sent by Email. Some are waiting for the mail, and others will be delivered to the local businesses that supported us in the next few days. We wanted everyone to know that what we considered a lofty goal of $10,000 to be donated to the PTEN Hamartoma Tumor Syndrome Foundation, and The Global Genes Project has been surpassed. The checks are still being counted, and the final payment from eventbrite is due any moment. But it looks like the total will clear $12,000 before we are through. Not too shabby for the vision of a feisty 11-year-old who has already begun to make tentative plans for what we will do even better “next year.”
And as I’ve digested the success, and have processed the overwhelming pride of a mother, and expressed our gratitude to family and friends near and far, (like the Yokleys from Colorado!) I’ve taken some time to reflect. Standing before a room filled with 150 of our friends and family on a bitter cold February morning left my insides warm and toasty from the love surrounding us.
Life moves quickly. For all of us for different reasons. But, with this syndrome x2 life seems to be literally swallowed by doctors, and tests and surgeries, with every spare moment trying to shove “normal” into the cracks. We miss stuff. A lot. We miss friends, and gatherings and social events, and celebrations, and ordinary get-togethers. We are absent more than we are present. Our friends and extended family are often neglected as immediate family has to occupy any moment that isn’t already full. I don’t actually remember the last time we had friends for pizza, or a casual summer gathering on the deck by the pool.
And I think about the pure innocence and wisdom of Meghan and Connor, as they finally met. Two friends from miles apart, with a life altering syndrome in common. Two bright, funny kids who have seen more than their fair share. Two kids who get compassion, and understanding, and life. Two sets of parents, immediately at ease with each other because we understand. And sometimes that’s all you need. And if you missed the two articulate, wise beyond their years, kids talking to the local news – click here.
I think about Georgia, a world away in Australia, and how she and Meghan have hit it off in a way only girls who share such a bond ever could. I think how wonderful it will be one day to get them together too.
And I think about Ashton, older than Meghan, but a girl on a mission all the same. And I think of all she has to offer the world, as she endures her 14th procedure on a stubborn AV fistula in her brain this week. I think about all the prayers we say, and all the questions Meghan asks. And her Mom. My peer. A Cowden’s patient too. A school teacher turned full-time mother later in life. Because it was meant to be. I think about the hours spent texting and messaging. And how I already feel so comfortable…
And I know that the room was full for them too.
I am grateful beyond measure for the ones who understand. Who don’t give up on us. Who stand with us, beside us, behind us, or just about wherever we need them to be.
I will resolve to try to reach out more. I just don’t know how many more hours I can squeeze out of a week. But I will try. Because the speed of life is astounding.
Sunday some of my college friends were delayed to the fundraiser. They were in the hospital with one, as her father was very ill. Yet, they found the balance. They stayed with her, and then came to us.
Thursday as I came out of I think my 7th vascular procedure I got the texts on my phone that things weren’t good. Her Dad passed away Thursday morning. My heart hurt. It was ironic really, as I had felt my own Dad ever-present as I got checked in and prepped. I got to thinking that out of 5 of us from college that I really stay in touch with, three had already lost a father, and one a mother and a brother. How did we get to this stage? How did life move so fast? And although my own recovery will keep me from making it to her side tomorrow, – I know she will feel the love in my heart.
We have to try to slow things down. Sometimes.
But, I’m not sure when. Or how. Because yesterday I sat in the back seat with my heavily bandaged leg, and we made the trek to Cohen’s Children’s Hospital on Long Island. And we saw an orthopedist about Meghan’s knee. Her vascular surgeon suggested we go – before the next embolization procedure in her knee.
Her MRI shows some damage to the knee structure. “Blood is a terrible irritant, even in small quantities…” And I would imagine that this AVM, probably active since birth, has been slowly eroding the knee. So there is swelling in the bone marrow, and issues with the patella, and all sorts of explanations as to why it keeps hurting. There is no real solution, but a synnovectomy will get him in the knee. He can “clean out” some of the scar tissue, and we can pray that gives relief and doesn’t provoke a “hyper healing” Cowden’s type response. But we have to try. They have to see. It’s time to get a real baseline.
So they will present her case next week. And we will hope that the recommendation is for the vascular surgeon to do his work on the AVM at the same time the orthopedist does his work. Because the recovery from the embolizations is tough. This one promises to be outright nasty. “At least a week on crutches. Minimum 4-6 week recovery. PT to build back the strength in the thigh muscle.” They will fill the knee with saline to get a clear view…
So he asked about her activities, and approved of swimming. Almost relieved when she told him she had given up soccer and dance because they hurt too much. He asked what strokes in swimming, almost tentatively, as if he was hoping for the answer he got.
“Butterfly is my favorite!”
And he looked relieved as he explained to Felix and I that butterfly kick was best on the knees. Meghan chimed in, “because you kick from your hips!”
We were once again impressed by her instincts and her depth of knowledge of her own body. She gravitated to a stroke most hate because it probably hurt her the least. We got the nod to let her continue freestyle and backstroke. But breaststroke is off-limits. Probably forever. Ironically – she never like that one much anyway…
We asked about the timing of the procedure. He thought before he spoke and told us he wanted to hear what his colleagues had to say.
We pressed him for early May. The tail end of the CYO season. The week after her first play, “Hairspray” at school. He told us to take it very easy. And if she doesn’t have another bleed before then, that’s probably a reasonable time frame.
“If… Probably…”
We should be used to all this by now. But, I think you never get used to watching your child get beat up over and over again. That’s why we pushed to try to plan… to try to squeeze in all the normal we can. Because she can’t keep having the fun taken away for the medical. It’s not ok. But, we plan very tentatively.
The speed of life can be overwhelming.
Thankfully we have so many of you along for the ride.
Next Saturday, February 28th is World Rare Disease Day.
Next Sunday, March 1st is Meghan’s first championship swim meet. Silvers. For the 100 butterfly – naturally.
More about a successful event later. For now, news that we’ve raised over $10,000 to share between the Global Genes Project and the PTEN Foundation is plenty while we rest.
PLEASE, spend 7 minutes on Meghan’s video. You won’t be sorry!
And every time I sit down to write I get distracted. Forgive my attention issues. There seems to be too much to attend to at once – and I have issues.
I didn’t want to go today. I didn’t. But I had to. Cause it’s time. It’s actually way past time to address the chronic, throbbing, aching in my legs. I saw a doctor last summer when I was near the end of my rope. That was a mess, which ended with me quite sure that a doctor with a staff that obnoxious would never be operating on me.
And, maybe it was for the better. Because I never felt quite right about him anyway. So I pulled myself together and I went to another doctor. A second opinion. This one was worried about an abdominal aneurysm, which thankfully was not the case, but at least he paid some attention. “You need a CT scan,” he said. “I need to make sure nothing vascular is wrong in your abdomen triggering all these veins to go bad. ‘ (I’ve had 7 addressed so far.)
I explained that I should only have CT scans when absolutely necessary. I told him about the radiation risk, which is especially dangerous for those of us with a PTEN mutation when cells can misbehave and develop into tumors of all sorts with ridiculous frequency – especially when provoked. I even explained I was allergic to CT contrast dye.
I was sent for the scan – premedicated for the allergy. Left only to pray that the radiation minded its own business. And the report came, and there were unsettling omissions – like checking the box that my ovaries and uterus (gone now since May 2012) were doing fine, and ignoring the large tumors being carefully watched on my spleen, and the cyst on my kidney. I was bothered. The doctor called to go over the report with me but didn’t have my chart and couldn’t answer my questions. I had the report amended. I tried to find someone else to read the disk. I thought I had struck gold in November when a doctor took an interest in our case, but that – like all other things – was not to be. So I waited a few more months. When January came and I was pretty sure Meghan would not be using the February week for surgery, I called to schedule mine. It was time to get the vein removed – starting with the right one. Triage.
I asked if I should see the doctor again since it had been a few months. I was told no, and given a date for the surgery.
Today was Pre Admission Testing at the Hospital. I think I’d enjoy getting my hand stuck in a door more than that. It is a mess of people who know very little asking the same questions over and over when they don’t know the answer. Instead of Pre testing, perhaps they should call it CYA – a way to prove to everyone you were healthy before they did whatever you needed.
Stop all your over the counter medications today.
Why?
Because some of them thin blood.
Which ones?
I don’t know – but they tell us to have you stop all of them.
My probiotic thins blood?
I just have to tell you to stop them all.
We were moving along until I read the consent form. “Left leg.”
Um… right leg…
At first she questioned me. Then she picked up the phone to question the doctor. The answer came with a new consent form and a request for me to see the doctor. Tomorrow between 9 and 2. Um, no. How about Tuesday? That I can do. Cause I LOVE spending my entire vacation – every time – in a doctor’s office of some type.
And as I was leaving she said, “You forgot your chest X-ray.”
Insert speech about radiation and Cowden’s here. As well as, why would I need a chest X-ray if I am not sick and my lungs are clear?
Right. You can get your x-ray down the hall.
No one asked for a supervisor. No one checked in on anything. This woman undoubtedly knew nothing of my condition, only told me my procedure would be cancelled if I didn’t go. For a hot second I did wonder if that wasn’t a better idea. But, there was a kid to get home to, and a dance she wanted to get to, and so many reasons to run away, and so many reasons it has to get done. But, in the end the pain in the legs drove me down the hall. Where I took another, albeit small, hit of radiation to the spot where my breasts that were removed harboring early stage breast cancer once lived. But, for good measure they put a cape on my abdomen. To protect the uterus and ovaries THAT AREN’T THERE!
I left angry. Sad. Mad. Frustrated. And grateful.
Grateful at least that the bungling was being practiced on me and not Meghan.
Next Thursday the 19th. It’s a minor procedure. But, wow. I think I need some prayers.
And them Friday the 20th it’s off to the orthopedist for Meghan
You see the MRI she had January 22nd – that I battled to have read until February 2nd- showed a decent size residual AVM in the knee. It’s not gone. In reality, its not much smaller than it was. Perhaps a bit less angry, without as intense of a blood flow, but yet still 2 x 1 cm embedded in the meniscus, and aggravating all sorts of other things.
ER 11/24
And just for fun this MRI showed evidence of problems in the knee itself. Too much messing around with loose blood flow for too long. There is some deterioration and its time for an orthopedic surgeon, the chief at a Long Island Children’s hospital to take a look.
I didn’t write the week I was ready to string up the vascular surgeon for not getting back to me. I thought it better to say nothing, because I could find NOTHING nice to say that week. Now, I am calmer. And we need him. So I breathe deeply. And I told his PA in my calmest angry voice, that no matter how busy they get, they need not forget there are humans, with families and real pains, and anxieties on the other end of those CD images.
In reality it doesn’t matter, because I suspect there is no good solution. They offered us another embolization. She recovers poorly from them. And truth be told, they aren’t working. And since insanity is defined as doing the same thing over and over expecting a different result – we decided to hold off a bit.
Plus, there is the whole endocrine thing to deal with. Like the TSH level that again doubled in 6 weeks on a higher dose of synthroid. And a kid who is functioning with numbers that would level me. So the doctor said, “I can’t explain it.” And he won’t prescribe an alternative medication. But he acknowledged the idea of insanity, and raising her synthroid again with no plan is definitely insanity. So we talked about T4 (Synthroid) and how she is at the upper dosing for her weight. And then we talked about how its the body’s job to change T4 into T3 so it can be used. So, I asked if it was possible that her blood levels of T4 were there, but her body was flubbing the conversion, which it has done before. If that was the case, that would explain her symptoms. So, we added some T3 to her existing dose of T4. And then she gets to wait 6 weeks again for a chance she may feel a but human.
Thankfully we’ve chosen to surround ourselves with positive distractions.
Thankfully 163 people are coming on Sunday to the Jeans for Rare Genes fundraiser, benefiting the PTEN foundation and the Global Genes Project.
Fortunately, my girl had influenced lots of people, and motivated them to raise awareness and support her favorite charities.
Fortunately, we have places to look to besides ourselves.
As I sit here with the seating chart to my right, and raffle prices to be typed on my left, I am grateful that there is a project. I am humbled by my girl and her determination to be “normal,” and a powerful advocate all at the same time.
I have a pretty big family. And among that family I boast countless uncles, great uncles, and aunts and cousins too.
But, I have uncles I’ve never met. They are brothers to my father who died just about 14 months ago.
My father had 7 brothers and a sister who I’ve grown up alongside. I have cousins galore, and I love them all.
But there is another part of my Dad’s life that only began to become real to me in the weeks preceding his death. And that is where I began to learn about these other uncles.
And even today, as I sit, on this snowy day, in my office, in Dad’s chair, and with his old champion sweatshirt for warmth, I have plenty of time to reflect.
We spent today home. Meghan and I were beat up by a schedule that is beyond our capability to maintain for extended periods of time. We crashed. Hard. Sometimes it’s easy to ignore this chronic illness we have. Sometimes it’s easy to forget about this genetic mutation lying in wait to wreak havoc on our lives. Sometimes we do such a good job pressing on – getting it all done – that we forget we need to pause.
Cowden’s Syndrome doesn’t cause the fatigue, per se. At least we don’t think so. But, somewhere in between the messed up blood counts, and the appointments, and MRIs and scans and trips to Manhattan, the fatigue finds its way in. Add in surgery on the calendar for me in February. Couple that with the raw determination of an 11-year-old who is intent on conquering the world – and you have focused school work, swim practice, meets, theater practice, and an epic amount of community outreach work as the date closes in on our “JEANS FOR RARE GENES” Fundraiser at the Hilton next month, and suddenly this exhaustion seems easily explained.
Suffice it to say, a January snow on a Saturday morning was truly a heaven-sent gift for us.
And so after the laundry is back under control, and the house is returned to reasonable order, I get time to sit with my blog – a place I have missed in the chaos of the last two weeks.
And while I have so many family and friends that I love so much, the reality is that when I had things on my mind – intense medical things. I would always and without fail use Dad as a sounding board. He would listen for hours with no judgement passed. He would offer advice when he could, and respect when he couldn’t.
For large parts of my youth Dad was absent, almost completely. I didn’t understand, but it was what it was. Sometime after I got engaged in 1999 our relationship began a lot of repair work. We talked more and more as the years past, but there was always a detachment. There was a shield. Even with us.
He settled on Staten Island finally, about 5 years before he passed away. He lived with his sister, my aunt, and they were good company for each other. He reached out. He made an effort. Slowly he started to let me in.
I was a psychology and education major in college. I remember the lessons on PTSD, or Post Traumatic Stress Disorder. Immediately so many things made sense, and I saw my father in those lessons. But the real moment came when he said it himself during one of our long conversations. “I have something called PTSD…” and there was an opening to a world I had never been allowed into before.
There was a young man – still in his late teens. A young man who became a Marine. One who enlisted with a few friends during a war that I knew precious little about until I began my own research.
My grandfathers, all three of them had fought in World War II and tales of their service were common. Never in a bragging way, but matter of fact lessons and experiences and stories, told and shared my whole life.
I studied World War II in school. I learned, probably not enough, but enough to carry on an intelligent conversation. But, I as a teacher of young children, had precious little knowledge of the horrors that were the Vietnam War.
My Dad who left for that war never came back. Sure, he survived treacherous battles in the jungle, but he never came back as the boy who grew up on the local streets with his friends and siblings. He returned a changed man.
My Dad gave his entire life for his country, even though his service record bills his active service as about 3 years (of that 13 months were in the jungles of Vietnam,) He came back traumatized, confused, and unsettled. One of the talks we had after the acknowledgement of the PTSD included, “I spent the first 40 years after I came back thinking everyone else was crazy, and the last 5 thinking maybe it was me.”
Years of wandering allowed him to make “friends” with lots of people in lots of places. But in reality Dad was a “man’s man.” It was easy for people to trust him and share with him. Many people who viewed him as friends knew very little about my Dad the man.
Dad with a buddy in Central Park
As he got sick Dad authorized the release of his medical and service record to me. He knew I would pore over every detail and search and question, and hopefully find answers no one else could. I searched and I read and I researched and I asked, but in the end the course of events was set to be what it was. During that process though I read, first hand accounts from my father about things I had never known.
I also got to spend more time in his apartment. And there were three pictures there. And Dad would talk briefly about those pictures. And I would wonder about the other men behind those eyes. And how their lives had turned out.
After we buried Dad in December of 2013 I continued my quest through our local Congressman to get his service records reviewed. Still in a deep quest for closure I uncovered some photo CDs in Dad’s things. Most were of photos taken by him. One was marked Vietnam. On it were photos not taken by Dad, of Marines who served with my him. There were pictures of men, pictures of war, and documents that I had never seen.
Not long after that, a conversation with Holly, a woman who we all love, who shared a long relationship with Dad, produced a contact list for Dad’s Marines. The names matched the names on the photos and I set about writing letters to each of them.
I sent out letters to each of them, looking for specific information. I knew my hope was a longshot. I was looking for recall of events that had taken place over 45 years prior. I sent out 18 letters. I expected I’d be lucky if I heard from one of them. Why would they answer me?
And that is where I learned of the uncles I never met.
Aside from the 2 Marines who had predeceased my Dad I had responses from all of them. Every single one of them reached out to me, to offer condolences, to tell a story, and to offer support. I laughed and cried and healed more during that month than I could have imagined possible. These men, together for a relatively short window of their lives, were deeply bonded as brothers forever. These were my “other” uncles.
And I connected with the men from the photos, “Merck and Zepe” as Dad called them. To listen to their tales of stories I had never heard, was a gift I could not have imagined.
But there is one. One “Uncle” who has been there for me this past year in ways far beyond what I could have ever imagined. “Uncle Alan” had listened to my tears, taught me, comforted me, and supported my endeavors. His compassion knows no bounds. He has prayed for my family, asked about my daughter, given me peace on Father’s Day, and has done more for me than I imagine he will ever know.
Last week I was at the height of exhausted and in my mail was a package from “Uncle Alan.” In it was the book “90 Minutes in Heaven” as well as a bumper sticker, a T-shirt, and a “US Marine AM-GRUNTS” hat. I cried. Tears of gratitude. For God’s introduction to family I never knew I had. I cried tears of healing, as I come each day to understand more about my father through these men who call him “brother.”
Dad and I spoke sometimes, towards the end, about the “whys.” He wondered why he got to come back and live his life, when his dear friend Tommy was KIA. He wondered about mine and Meghan’s Cowden’s Syndrome. He wondered if there could be a connection to his ruthless exposure to Agent Orange. If somehow that genetic mutation could have arrived in me through him. He wondered about the possible connection to the cancer that took his life. We wondered together lots of things we will never know the answer to.
But there are things I don’t wonder.
Dad’s life had purpose. It had meaning. It left impact on everyone he ever loved. Out of his suffering came great strength, and a deep faith in a good and perfect God. I don’t wonder for a minute where Dad is now. I am sure he is flying free in Heaven.
I don’t wonder “how” we got Cowden’s Syndrome. Cause we have it. I don’t even wonder “why” we have it. Because we do.
And who we are develops through our experiences in life. And while there are some I would have preferred for us not to endure, I don’t wish to change them. We are learning to be the best people we can be.
And along the way, there are people looking out for us. “Uncles” we never knew.
Alan signs his letters “S/F” for the Marine Corps motto “Semper Fi” – “Always Faithful”
A permanent addition to my ankle…
I have not known truer words.
I plan to get to visit “Uncle Alan” in June. We have lots more to talk about.
I sometimes hate the saying that things work out the way they are supposed to. Sometimes I just don’t buy it. But, then there are other times.
I have suffered with varicose veins since I was in my early 20s. I had 2 stripped surgically before I was 30 I had 5 VNUS closure procedures in 2011.
Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.
It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning. During the day I get distracted. And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger. The swelling is evident. The blue veins bulge.
Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help. Last summer I bought shorts. In a size 2.
This is not my leg – but a close comparison…
This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.
As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome. It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail. See there are differences even within the PTEN mutations that link us all. Some are germline mutations, some are frameshift, some are missense, others nonsense. AND, there are further specific differences too complicated for me to process. It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.
And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.
Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.
I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.
There was the sonogram. The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities. (You can read that as difficult to please.) Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting. The blood sits stagnant there. That apparently is not the most intense of my issues.
Then there was the visit with the doctor. A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.
He asked if things got worse with the vein in my leg after the tubal ligation in 2011.
“You mean the hysterectomy?”
“No, that was the following year.” He was reading from a sheet I had given him. He was right.
I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.
“I’m not sure, why?”
“I am wondering what is causing these veins to turn. And I have to look at every possibility.” As he places his hand on my abdomen.
“How long had that pulsing been there?”
“Um… I don’t know. (Feeling incredibly dumb for ignoring my body) Why?”
“Well, I won’t even consider surgery without some major tests. First I want a full abdominal CT to check for vascular malformations.”
Now truth be told I wasn’t shocked to hear this. I had a nagging, behind the ear voice telling me to get that pulsing checked out. But I had met with a vascular surgeon in July and that turned train wreck. So I was a bit delayed. I also I guess didn’t really like the fact that he could feel the pulsing too. I thought, well I thought that was just mine….
So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.
And as I tried to process that, I thought of everything. I ran the gamut from aneurysm to AVM.
As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.
MY SPLEEN!
I had never mentioned my spleen. The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round. I was told they are vascular. I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.
I really hope they aren’t misbehaving.
I like my spleen.
I also like that this doctor cares enough to check everything out first.
Pain in the butt? Absolutely. Life-changing? Maybe.
The other doctor was ready to take the vein out in the office with no prior testing. This guy told me I need an ER and tons of pretesting. You know what? At least he takes things seriously.
So now I wait. For authorization. For testing. For a whole host of inconvenient to schedules to processes.
And fortunately there isn’t much time to waste on worry.
Life is busy. We squeeze what we need to into the crevices.
We can’t let Cowden’s Syndrome distract us from this life that needs living.
This one is a favorite of a dear internet friend 🙂
Much like the Cowden’s Syndrome that will never go away, that will follow us for all our days, the pile stalks me. I swear it mocks me. Sometimes when I am not looking, and other times right in front of me.
In the pile are, well all the things you’d expect in a pile; bills that need paying, junk mail that needs sorting, statements that need shredding, or filing, problems that need phone calls, etc. etc.
The pile used to be in the basement. But it was dingy down there so my husband bought me a laptop and the pile followed me upstairs.
Since it had no proper home on this floor, it could often be found on the dining room table, or on the counter, or any number of other places.
My office has been finished. A bonus to me after Meghan’s big move upstairs. I have a big girl desk, and places to put all the things I need to manage our house, our doctors appointments, bills, authorizations, and complaints, and my quest to help others find the path we’ve begun walking towards better health and financial freedom.
Slowly I am beginning to decorate. The curtains and blinds have arrived. The printers are hooked up. The electrician I love neatly hid the wires.
The photo albums from years and years of my continued obsession with printing photos even in this digital age, line the wall.
The closet stores years of teaching materials, too outdated to have in my classroom, but current enough that I need to keep them – just in case.
Leaning on the wall to my right is a photo I took from my Dad’s apartment, just sitting there waiting for me to decide what to do with it, and as I type I sit in his chair.
And, just to my left, as I work diligently to ignore it, sits the pile. It found its way right into the new blue room with the gray curtains and white furniture.
I don’t like piles.
Partly because they are messy and out-of-order, and as I have said before, far too much of life is messy and out-of-order for me to have piles on top of it all.
Partly, they worry me, as there has been known to be a bill sitting in one of those piles, or a newspaper with a message that needed reading, or this week’s surprise, notification of a car recall.
Despite how many hours I spend working on making it go away, I am at points close to losing hope.
There are times I feel pulled, and stretched in so many directions, that I am quite sure NONE of them is getting the best me. Especially if they’ve sent notification of anything via mail – because it may just end up on the pile… and then – who knows?
If you’ve been reading for any stretch of time, hopefully by now you know I am not hopelessly out of touch with reality.
I get that there are many demands on all of our lives that sometimes stand in the way of a neat and orderly home. I really do get it. And I am trying to find a place where I can live happily somewhere in between.
I am a happily married Mom of one, who, for the purposes of all after school activities, and weekly medical appointments, is single. My husband works much farther from home than I do, and his day ends later. End of story. The afternoons are all mine. And they work out just fine. And unlike many couples, we share what we can, and he being a far better cook, prepares something for us to eat. Quickly. Before I head out to whatever has the night tied up. Whether it’s a doctor’s appointment, or spending some quality time with a relative who isn’t well, or attending a meeting, at my school, or hers – more often than not there seems to be something on the schedule every blessed minute.
Which leaves precious little time for friends, and phone calls, and random get-togethers, and fun. And well, it explains why the pile – although tame at times, never seems to go away.
Yesterday I listened to a 2 hour webinar for a grant I got for work. But I didn’t have work. Since it had to be after school anyway I scheduled it then to be sure I’d fit it in. Then I printed letters, and log-in cards for the computer program for the 32 kids across three classes that will be doing it. And while I am excited to see their progress, I was not excited to be doing that. Nope. Not one bit.
And there was the grocery shopping, and the dusting, and the generalized dog fur removal.
And the list and the questions started going like mad in my head,
The dermatologist – why can’t I get that woman on the phone for the appointment for the three of us?
I better confirm the date for our Rare Disease Day brunch in February before we lose it.
How can I figure out how to set up online payment for that? I really have to check.
Make the appointment about the car recall ( on a Saturday so I can sit for hours since we only have one car.)
And the car needs an oil change and inspection.
What about that car insurance lady who never called me back – got to get on her
And the pictures from vacation – almost 2 months ago…
The outside of the house needs a day all onto itself
And the dogs need baths, badly
What is the real reason Meghan’s foot X-ray looked like that?
Why is one of her feet over 1/2 inch off in size from the other?
What’s with the new knee pain?
When do we have to bring the swollen knee to the attention of the AVM surgeon who said, “as long as she’s not symptomatic?” Can she last swim season?
Can she handle this schedule? I mean without getting sick? Cause she’s close, and there’s a lot going on, but I don’t want to say no to all this good stuff….
And when, WHEN, WHEN….will I finally visit with some friends?
STOP………
My husband sat down with me on the other chair in the office. The panic was beginning to escalate.
Take a breath. You need a break.
A BREAK? HOW CAN I TAKE A BREAK? DO YOU KNOW THERE IS LAUNDRY, AND MEDICINE, AND DUSTING, AND BILL PAYING, AND…..HAVE YOU SEEN THIS PILE?????????????????????????????????????????????????????
Sometimes I find the notion of NOT getting things done maddening. But, if we are very fortunate, we have a spouse, or a soul mate who balances us perfectly.
He knows I need to step away. He knows I need to visit some long-lost friends. He also knows I need to spend lots of time with people who aren’t quite well. And, he knows I need to spend time with MY family.
So today, we went pumpkin and apple picking.
A nice farm, about 45 minutes from home. Just our speed. The pumpkins were kind of “placed” off their vines, but nice all the same. The apples were fantastic, and the walking was almost reasonable. For about 20 minutes.
The the pain started to show in the eyes of that beautiful girl who just wants so badly to do what everyone else is doing. Walking. Repetitive motion. Fractured foot, bone chip, or something way deeper? At that point all that mattered was saving the day. And there was Daddy. And his cape. As he bent over and swooped his almost 5 foot 4, 11-year-old onto his 6 foot shoulders. And they walked like that for an eternity. Picking apples. Chatting. Laughing.
And she got down long enough for us to take a few pictures.
Then, as we walked to the car the knee buckled and that was it. Back up on the shoulders again.
And even in pain as we got into the car after less than two hours, the proclamation that it was ,”FUN!” Took some of the tension out of my shoulders.
So we stashed our big girl in the cart in Ikea, even as she told us we were breaking the rules. And we looked at bedroom furniture for the grown ups, and headed back to drop some apples with the great grandparents.
I had a special place in mind for the 4th mum in a set I had bought at Costco, so after taking care of that, and another special visit, we even watched a TV show together.
And you know the best part of it?
The pile is still in exactly the same spot. While it didn’t magically disappear, it also didn’t live up to my fears of having it take over the room. I have to get in front of it to shift my focus to the things I enjoy, and I will get there…
Meghan had a nosebleed tonight. A wicked one from the days of old. And the knee never did bounce back. She’s in our room. Asleep with Felix. There will be a spot for me once I have cleared my head.
My heart, as a mom, and especially as the mom of a chronically ill child, will never be a place of peace. But with work, even with the obstacles, Cowden’s will constantly toss – we can be happy, productive citizens. This Syndrome does NOT own us. It takes one hell of a wicked set of stamina to stay in front of it, physically, mentally, emotionally, and in a practical sense too, but we’ve got this.
Thursday maybe the ENT will look down at that damaged esophagus and offer up some good news.
Until then, it is our hope that whatever your struggles, and we know you all have many in your hearts, minds, bodies, and spirits, that you are able to find comfort in those you love, and that even if only for a few hours, the “pile” seems a little less insurmountable.
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.
beatingcowdens 