Mortality

Published on July 1, 2015 by beatingcowdensLeave a comment

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" — 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

BEATINGCOWDENS,

WHILE CELEBRATING ALONG THE WAY.

Today I Cried

Published on June 25, 2015June 25, 2015 by beatingcowdens8 Comments

I cried today.

A lot.

I hate it when that happens.

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

BEATING COWDENS!

#beatingcowdens #collegebound

Published on June 10, 2015 by beatingcowdens2 Comments

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.

Regional Winner - Kohl's Cares Scholarship 2015 — Regional Winner – Kohl’s Cares Scholarship 2015

Search for Scholarship Winners using this link.

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.

“I Am From” – Guest Blogger Meghan

Published on June 6, 2015 by beatingcowdens3 Comments

I Am From

by Meghan

I am from Love

I am from mutts barking at night

I am from swims in the backyard pool

I am from hospitals and procedures

I am from suffering

I am from anticipation of how my life will survive

I am from anguish after surgery

I am from crying in the hospital at night

I am from fear of not being strong enough

I am from doctors saying this cannot be

I am from hearing that I am unusual

I am from paralyzing fear of iv’s and needles

I am from being cast out for my pain

I am from fear of not surviving from the pain

I am from baby blue walls

I am from a home that cares for me

I am from a room of toys so big it’s like a store

I am from a home with clouds as chairs

I am from a home like a chocolate bakery

I am from the calming smell of Yankee candles

I am from the smell of brand new books

I am from the pool

I am from the thrill of swimming

I am from competition

I am from Wagner Aquatics and CSI

I am from the relief that comes with butterfly

I am Lori

And Felix

I am from Barbra

And Leon

I am from the Ortegas

And I am from the Thompsons

I am from many beliefs

I am from hurt and hatred

And I am from love and compassion

I am from different weather each day

I am from winter devouring sweet spring

I am from Christmas trees going up after Thanksgiving

I am from a special Thanksgiving meal the day after

I am from August Disney trips

I am from spices

I am from cookies and cake

I am from avocado

I am from Isagenix

I am from playing with my first dog Lucky

I am from meeting my second dog, Allie at pet smart

I am from church at Zion and Castleton Hill

I am from the beliefs that Jesus will rise again

I am from running up to the pulpit with Lucky in tow

I am from Gandhi’s “Be the change you wish to see in the world”

I am from adventure and fantasy filled books

I am from Rick Riordan and J.K Rowling

I am from action figures and comics

I am from DC universe

I am from Wonder Woman

I am from He-Man

I am from Batman and Superman

I am from the sidekicks

I am from X-Box 360 and video games

I am from mythology

I am from the LOVE of my family

BEATING COWDENS!

She didn’t get THAT from me!

Published on May 28, 2015May 28, 2015 by beatingcowdens4 Comments

And in her never-ending quest to keep Cowden’s Syndrome firmly in its place, my girl blew me away yet again.

I am just along for the ride.

She looks like me. She and I share a broken PTEN gene, and all the ramifications. She inherited my tendency to grow things, and perhaps her body is even playing harder with her.

We are roughly the same size. We have curly hair. We share some clothes. She and I are both stubborn, sometimes to our benefit and sometimes to our detriment. We are strong-minded and strong-willed.

And that is probably where the comparisons stop.

Yesterday after a full day of school, she fit in a PT session, 2 hours at after school drama, a good run at her abbreviated swim practice schedule (for the second day in a row,) and came home to complete some lingering homework.

Tonight, her father and I took her to the school’s chorus/drama performance. It was hot. It was long. It was so worth it.

The kids have amazing talent. I guess what I didn’t really get until tonight is that mine fits right in.

After a skit on Helen Keller, where she played Annie Sullivan, she stood with several 6th-8th graders and they each sang acapella, an excerpt from a Broadway show tune.

Meghan had never heard of “Fiddler on the Roof.” She downloaded the song she was told to learn. She practiced. I fought back tears of pride and joy.

I told her drama teacher I had no idea she had that in her. The teacher told me to “wait and see what we bring out of her in the next 2 years.”

What a gift. Two happy places. The stage AND the pool. BAM!

Take that Cowden’s! This kid’s got things to do…

“Take pride in your pain…”

Published on May 25, 2015May 25, 2015 by beatingcowdensLeave a comment

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.”

Remember THAT. Always.

Now we’re back where we started…

Published on May 15, 2015May 15, 2015 by beatingcowdens1 Comment

“Do It Again” (The Kinks)

“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…”

Reflections on Mother’s Day – from a “Rare Disease” perspective

Published on May 11, 2015May 12, 2015 by beatingcowdensLeave a comment

Dates, numbers, anniversaries, addresses, and all sorts of other numbers crowd my brain. I’ve said this before, and I will say again, it is a blessing and a curse. It is a good thing to celebrate accomplishments, and the anniversaries of such things. It is dangerous territory to recall to be caught up in the negative aspects of any day. By doing so you give it power. And, if you are not careful you give it power over you.

It is a dangerous road to walk. I have done many miles on it. And my brain does not differentiate the “good” dates and the “bad” ones. I remember them all. The problem is, some fill my heart with gratitude and joy, while others seem to provoke anxiety unceasing – warranted or not.

I have never been a fan of “Hallmark” holidays. Valentine’s Day, even after I found the love of my life, has never held any appeal. Mother’s Day and Father’s Day don’t do much for me either. Before you jump on me for not loving my parents, I want to share part of an interesting article I read on the history of Mother’s Day.

From: Mother’s Day Turns 100: Its Surprisingly Dark History

By Brian Handwerk, for National Geographic

PUBLISHED MAY 09, 2014

“For Jarvis it was a day where you’d go home to spend time with your mother and thank her for all that she did,” West Virginia Wesleyan’s Antolini, who wrote “Memorializing Motherhood: Anna Jarvis and the Defense of Her Mother’s Day” as her Ph.D. dissertation, said in a previous interview.

“It wasn’t to celebrate all mothers. It was to celebrate the best mother you’ve ever known—your mother—as a son or a daughter.” That’s why Jarvis stressed the singular “Mother’s Day,” rather than the plural “Mothers’ Day,” Antolini explained.

But Jarvis’s success soon turned to failure, at least in her own eyes.

Even Anna Jarvis did not intend the holiday as it has become.

I have epic amounts to be grateful for. And I am. Every day. I think that’s why the pressure of having it all jammed into one day confuses me and stresses me out a bit.

In church we were taught, “Honor thy father and thy mother…” I believe the meaning was every day.

So yesterday I needed to do some soul-searching. And I think I figured a lot out.

I have a tough as nails mother. She is the strongest woman I know. Not a day of my life goes by that I am not grateful to her, and for her. And I try not to let too many days go by without telling her so. Life has taught some tough lessons, and sent some reminders about how fleeting it can be.

One of the many lessons I learned from Mom

I have two grandmothers on this earth. One I had the privilege to grow up with, and even though the recent years have been cruel to her memory, my memories of her, and of her love, penetrate my soul.

I have another grandmother, a gift to me 27 years ago, who inherited me as a teenager and allowed herself to love me. I am so grateful for that love.

And my grandmother Gen who left for heaven in October, whose smile I can see, and whose laughter I can hear… her memory warms my heart.

I am so very thankful I did not wait to acknowledge them only once a year.

My girl is recovering from surgery. On my couch. In pain. Feisty. Looking to move. Bored. There would be no grand family celebrations yesterday. My husband was fixing our deck that is literally falling apart. A labor of love – and safety. I stopped in for a quick visit to Mom and one Grandma.

I reflected about Mother’s Day a year ago. Spent in the pediatric unit at RUMC. Scared out of my mind. Not knowing what we were up against.

Then I thought about Mother’s Day 2008. A few days after the tonsils and adenoids came out.

Or Mother’s Day 2012, as I awaited my hysterectomy, a few weeks after my double mastectomy.

Then I thought about my friends. The ones who have lost their moms way too early.

And the others, whose hearts yearn to be a mother, or those who ache to have larger families than they do.

My heart aches for those who have lived through the unthinkable, and have lost their own children.

Why so much pressure put on one day?

Wouldn’t it just be easier if we celebrated our Moms every day? Instead of waiting for one day?

I know I may have an unpopular idea here, but so many unconventional things work for us.

I would never claim our lives to be “harder” or “easier” than anyone else’s. I’m not that kind of fool. But I will dare to say that maybe raising a chronically ill child makes it “different.” Maybe facing life with two rare genetic diseases in the family makes me think of things in a slightly unorthodox way.

I stick a note in my 6th grader’s lunch just about every day. And I will until she tells me to stop. I will remind her in as many ways as I can, of my love for her every day.

Life is scary. Our lives are scary. Wednesday some machines, and a very smart doctor breathed for her, for over 2 hours. This is not a rare occurrence. This is something that goes on regularly, for one of us. But, they told me she was, “stable and strong,” and in those words were the best gift I could ask for.

Mother’s Day is every day. From mother to child, and child to mother, and aunt to niece and grandparent to grandchild. Not in the, “buy me lavish gifts or send me to the spa” sense. But, in the, “I’m really lucky to have you. Right now. Today. and thanks. For that thing you do. For that smile. For that hug. For calling me. For calling me out. For driving me to the store. To school. To practice. For driving me insane. For making a mess. For sometimes cleaning it up. For sitting by my hospital bed. For getting me ginger ale. For helping me walk. For making me laugh. For never giving up on me. For understanding I won’t be here forever. For being my cheerleader. For supporting me. For listening to me. For shutting up. For saying just the right thing. For explaining the math. For butterfly kisses.”

Mother’s Day in our house may be low on pomp and circumstance, but it’s high on all things that matter. Right now we’re nursing a recovery. And it’s coming along, thank you very much. We are incredibly proficient at this.

And as Mother’s Day 2015 drew to a close, and as we ate our gluten-free pancakes for dinner together, I was struck with the thought that I would not have it any other way.

Cowden’s Syndrome – I guess it’s here to stay!

Published on May 9, 2015 by beatingcowdensLeave a comment

I Just logged onto my blog and saw that it was my 3 year “Anniversary.” So I dug up my very first post from May 9, 2012…

beatingcowdens

So it was a really nice doctor – or two, who said in the summer of 2011, you have to take your daughter to a genetecist. There are too many unconnected “dots” I was told. Someone will be able to diagnose something. But, having gone almost 8 years with her multiple surgeries, countless doctors appointments, and unexplainable ailments, I had my doubts. I spoke for an hour with the genetic counselor before the visit. I think it took the doctor all of 20 minutes to say, “It’s a PTEN mutation, most likely Cowden’s Syndrome. We will test her today. She will be positive, and you will be too mom.”

P – what? Cowden’s Syndrome – What the hell? How could he know that from looking at us? Was I missing something – some kind of freaky attributes that made us so obvious? I left more self conscious than curious, and…

View original post 1,043 more words

“Lucky” Number 13

Published on May 6, 2015 by beatingcowdens6 Comments

People count all sorts of things. Among the things we count are surgeries.

Although the most recent ones have been predominantly knee related – 2011, 2012, 2012, 2013, 2014, 2015… we don’t forget the others that fit in. And we don’t even try to talk about them without the three page cheat sheet detailing the most pressing medical information. We don’t talk to over zealous residents without the 32 gig flash drive pulling up PDFs of old blood work and reports. (Saved her another stick today when I could produce a recent normal liver enzyme panel!)

So today, surgery number 13, was not a surprise. It was anticipated and planned very deliberately for months on end.

The day started before 5, scheduled for a 6 AM arrival. But, in reality it started last night. Bags were packed to include clothes, toiletries, snacks, electronics, chargers, and our shakes too.

We got up and out quickly. No fanfare. No time for a “selfie” of the three of us in our “Never Give Up” T-shirts. We checked in just past 6 and shortly after were performing all the typical surgery routines.

It is funny. There are two groups of people in my life- those who have similar numbers of surgeries to us, and the larger group – those who have had next to no surgeries. The first group understands surgery “routines.” The second group raises some eyebrows. They are horrified at our use of the camera in the hospital. But this is our reality, and I can pack for surgery as well as I can pack a carry on for vacation.

We were greeted in pre-op by about a half dozen people all asking exactly the same questions (even though they and I had the cheat sheet, we still had to play the question/ answer game.) Several consent slips were tossed at me. The anesthesiologist and Meghan made a deal involving the timing of the IV and the mask. Felix was given the necessary garb to walk into the OR. I stole a few extra minutes to clarify the plan with the orthopedist.

And I must confess there was some major anxiety. See, the plan as I saw it was for her to have the AVM embolized while the orthopedist cleaned out and searched for the elusive “leak” in the artery. That’s why we coordinated surgery times. Except, as it was presented to me today – the vascular guy wasn’t touching the AVM unless it was absolutely necessary. This was a far cry from the report after the MRI in January when we were told another embolization was necessary. But, it was now in the moment. They had a plan and I had to play along. The orthopedist promised me the vascular guy would be there while he poked around at the beginning in case he was necessary. He also promised me he would do his best. What more was there to ask, I guess.

In the waiting room I thought. Too much. But, when I was just about insane with my thoughts, I let them wander to Ashton and Suzannah, and the number of hours involved in EACH of those procedures, and I tried to feel better.

After about three hours we were greeted by the orthopedist. His words were varied, but included “not as bad as I expected,” “quarterized several spots that were leaking blood,” and, “cleaned out a good deal of scar tissue and debris.” He gave us some pictures to see his work, and left us to meet up with Meghan in recovery.

She woke up slowly, but well, and soon she was alert. While she spoke to her dad I fielded detailed questions from several more people who held the cheat sheet. I took out my copy and obliged them with answers. She woke in the most terrible kind of pain, curtailed by a dose of morphine and some ice. Lots of ice. For Meghan. And for me- as I managed to bang my head on the table. Insert exhaustion here.

The pediatrician on call was relentless reviewing the three sheet medical history. Eventually we got our room, and some time around 2 we were greeted by friendly nurses, a nice bed, and some more pain meds.

Things were settling a bit until the “Inquisition” took place in the form of that previously mentioned pediatrician. I have to tell you she succeeded on really aggravating my last nerve. She actually handed me her copy of the “sheet” which had been copied to just about every department so she could ask me the same questions. By now the fatigue was starting to set in. I resented the implications that it was somehow my fault no one was “running” my daughter’s medical care but me. I explained carefully that I was jaded by years of dealing with sub par medical professionals. She did not take the hint and proceeded to contact my pediatrician to tell him she disagreed with one of Meghan’s medications. Whatever… Truly. Spend some time learning about Cowden’s or ANY Rare Disease. Then we’ll talk.

Arrogant self- importance. Ugh.

We were called down to radiology at 2:30 so the feet could be X-rayed. The orthopedist believes, acknowledges, and is searching for an answer on the foot size discrepancy. Results tomorrow. In the mean time his caring makes him my current favorite.

Pain medications in place. Crutches safely in the corner. Lights are off. Movie is on. And the day is just about over.