I was looking for something to describe my mood today, and there it was. Simply stated by a brilliant man, and there on the “Perpetual Optimism” Facebook page.
We keep going because we have to.
We keep going because if we DON’T, then we will fall.
We keep going because it is the only way to keep our balance.
I am tired. Tired of running, and sorting, and organizing and doing – all the time. Tired of working full time, being a full time Mom, and being a full time researcher, full time medical billing secretary, and a full time organizer… of all things.
I am not perfect at any of those jobs, and that frustrates me more. I want to do them all perfectly, but there is precious little time to pause for fear I might lose my balance.
I am grateful. For my husband and my daughter. I was never very good at riding a bike. Now that I do it full- time, they are my training wheels – always ready to hold me up… just in case.
Sometimes you read a story that just needs to be retold.
This link will take you to the world of a young lady I “met” through my blog and have come to respect.
She does not share my same genetic mutation, hers is the BRA-CA gene, and mine is PTEN. But the breast cancer risks are ridiculous for both, and she bravely as a young twenty something, underwent a prophylactic bilateral mastectomy.
In a rare request, she is asking for help, and I certainly feel compelled to share her reasonable request.
It is through social media that I have come to find others “like us,” to share mine and Meghan‘s story of our Cowden’s Syndrome battle. Without that outlet, I would feel incredibly lonely.
Please take a moment to read Rachel’s story, and another to respond to her request.
My mom is a member of the Los Angeles Pink Dragons, a dragon boat racing team of breast cancer survivors. She has been paddling with the Pinks for about a year now. Last night, one of her teammates passed away after a long battle with breast cancer. Frances was my mom’s benchmate on the boat. On the Pink Dragons’ Facebook page, Mom writes: “Frances, your courage and determination was an inspiration to all of us. Your teammates will miss you so. Rest in peace, dear friend.”
Then scrolling down through my Facebook newsfeed, I was accosted by another heartwrenching message, this one from Bright Pink founder Lindsay Avner: “My heart breaks upon learning of the loss of Rebecca, a member of the Bright Pink Vermont family, who lost her battle to breast cancer at only 29 years old.”
Anxiety in full swing before 7 AM. Never a good sign. Especially when the panic attack is coming from your 9 year old.
See, I have a problem with this. And maybe it is where some of my anger comes from. I don’t have a problem with Meghan. I am not upset with her, or her anxiety. I am really just PISSED OFF at the cause of her ceaseless worry. It is against the balance of nature that a nine year old should have to have this much to be concerned about. It is absolutely unnatural that I have to soothe her fears while desperately making sure my words don’t form any type of lie. She is too smart. And her memory is way too good.
Sometimes, on mornings like this one. I have precious little to say. So, I hold her, as my stomach lands somewhere around my ankles, and I have a tremendous desire to (as an online support group friend suggests) lay on the floor and throw a massive fit.
And while she is crying about the huge overgrowth that on her gums where she lost her last tooth. I am trying to convince her that maybe, if we brush like the orthodontist said, it will go away. (“LIAR” I hear my inner voice scream..)
Once, a few months ago, soon after the braces were on and the gums were flaring in the full on overgrowth of Cowden’s Syndrome, the kind orthodontist made a general statement in the room where Meghan and I were. He said he was not familiar with Cowden’s, but (thankfully) he believed Meghan to be carefully caring for her teeth. However, if the overgrowth continued she would need to see an oral surgeon to have her gums cut back.
Yep. He is a nice man. But, he obviously doesn’t know my daughter doesn’t miss a beat. She was all over that comment for weeks on end. We already had her gums cut once in 2008 for an odd thing that grew over her front tooth. She may not have a solid memory of the day… but she remembers enough to know she never EVER wants to do that again.
So, what is a Mom to say, at 7:15 AM when the anxiety is impossible to manage? I need to soothe her AND get her in the car (as the NYC School Bus Strike continues) in the next 15 minutes.
At least she laughed. It’s nice to have a smart kid. One who can respect that there just isn’t anything else for me to say. Some days we have to push on. Even when we are worried and scared. Even when we don’t want to. Even when it’s not fair.
Doesn’t change the fact that she is scared, and I am mad, and the permanence of this whole Cowden’s Syndrome thing really just stinks.
So she got to school and I kissed her and wished her luck on her math test, and she took her aches and pains, and her heavy heart, and her big brave smile, and headed off into school.
They are nice to her there. Really they are. But I cried on the way to my school, just a few minutes away. I am in a rut. I have to get past this anger… for both of our sakes. But lately I just feel mad.
Of course that’s not who you see when you meet us. You don’t see worried, and mad. You see our smiles. See we get life. Both of us do. On different levels of course, but we get it. We know there are so many people who suffer. We know how blessed we are. Our prayer list is endless. But some days we just “keep swimming…” and…(we)
I got the message at about 12:45. Meghan’s school nurse had called. I called her back to hear the familiar voice that I have come to trust tell me that Meghan “didn’t look right.” She was complaining of lights in her eyes. She was “off.” After 5 years in that school, I have received limited phone calls. When they call – I answer. So, with permission I headed out early.
I got my girl home. We sat in the dark room. I rubbed her eyes. She had a bit to eat. Eventually she tarted to perk up…the anxiety had gotten the best of her. All the makings of a migrane at 9. DAMN this syndrome. Leave her ALONE!
And as we wrapped up for the day. Much calmer than when we had started, there was happy chatter of girl things, and talk of sleep overs and normalcy. With a kiss and a smile she headed to bed. God, I love that little girl.
I got in the car to check in on my grandparents. The phone was off the hook. This is an ongoing event, and one we share lots of laughs about. I arrived to find them in their recliners, watching TV. The phone was in Pop‘s pocket – on.
I asked about their night and Pop told me the story of how he “pulled over a mat and snaked the toilet, a little bit at a time.”
“How old are you?” I asked.
He winked and smiled, and told me he forgot.
I guess it didn’t matter because everything was working just fine. But some days I feel like I might as well be 93 and he, 39.
As I drove home I thought about genetics, and environment and all those biology classes I hated in high school. I may not have inherited their PTEN gene, but I grew, and learned, and was taught in their environment. I grew up in a climate of a “can do” attitude. We did… because that is what needed to be done.
Still, at 92 and 93 my grandparents do what needs to be done.
I decided while I did not gain all their good genes, I gained their drive and determination. Their faith,stamina, and hopefully some of their wisdom.
I will get out of this rut. Cowden’s Syndrome will not own us. It will not win. We can do it, and we will.
I saw superheroes today. Not the kind that normally come to mind.
The 9th floor of Memorial Sloan Kettering Cancer Center was absolutely crawling with them.
None of them had capes. And they weren’t any funny colors.
None of them could fly, and yet I am sure that’s what they were.
I saw young bald superheroes with smiles that could light any room.
I saw older, more mature superheroes, heroically managing their IV poles, after teaching a younger one not to cry.
I saw parent superheroes, who although their capes were invisible to the naked eye, possessed nerves of steel, and the ability to make their young one laugh even as they themselves were inches from despair.
I had a lot of time to watch them. We had a long wait this morning. And even as I kept Meghan distracted, my eyes never left them.
They navigated the floor like it was home, handled IV poles and ports and masks, like they were additional appendages.
These people- the young ones and their parents, are made from a stock stronger than most of us. They endure the unimaginable, day after day. Some endure it for years on end. And they press on – because that is what you do.
My beautiful cousin Meghan was one of those superheroes,
Sometimes it ends well, and some times it doesn’t. But while you are there there is no time to think, or to wonder. You must just press on.
That is the story that the 9th floor of MSKCC told me this morning, as we waited for preadmission testing.
Meghan had a 9 AM appointment and between blood work, and our meeting with the nurse, we had at least an hour to wait, and watch, and marvel, and wonder, and worry.
The biopsy is Tuesday. The results will be in by Thursday so they say.
Then, we can make a plan. They tell me they can get the thyroid removed in a few days if the biopsy is positive.
If it’s not cancer… get us home. And, if it is – GET IT OUT OF MY LITTLE GIRL!
She will have nothing to eat or drink after midnight Monday. She will be tired, and cranky, and hungry when we arrive on Tuesday. But she will get anesthesia like she asked, and the procedure will be much more humane.
Proverbs 3:5-6
Trust in the LORD with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight
As my husband and I lay last night trying to fall asleep. We lamented over the fact that we are waiting. Waiting for a call for a biopsy time for Meghan. Waiting for a final decision on my spleen – still. Waiting… for all sorts of other less significant things.
The waiting is one of the worst parts of Cowden’s Syndrome. It is a blessing to have the warning to seek early detection, but the 6 month cycles of scans and tests, coupled with the waiting for results…. sometimes it’s just torture.
Meghan is nervous. Not about the threat of thyroid cancer. Bright as she is I doubt she grasps the full reality of that. She is waiting and worried about the biopsy. She already struggled to sleep last night.
As we spoke my husband said something that struck me. He said, “I am a little tired of being carried. I am glad God is there, but I want to walk a little too.” It only took me a moment to know he was referring to his favorite poem – the one we used as one of the readings in our wedding.
I guess we are waiting, for our feet to spend some time on the sand, knowing we are being held up – and incredibly grateful for the support…
I can remember as if it were yesterday, walking the halls of the elementary school where I am a teacher, in the hours after I had heard of the horrors of 9/11. I attended the same school as a child. I knew that the lives of the young second graders I now taught would never be as happy and carefree as mine; some 20 years prior to that day when everything changed. It was an eerie feeling. One that I knew would be realized gradually. It was a moment I have reflected on countless times through the years.
Friday was a busy day. I never stopped for lunch, and it was 6th period before a colleague mentioned the shooting in Newton, Connecticut. At that point the details were still extremely sketchy, and while I was troubled, I was not nearly as disturbed as I would come to be over the next few hours.
As the details of what had transpired at Sandy Hook Elementary school began to unfold this weekend, I was, like any other compassionate human, horrified and appalled.
I send my child, my heart and soul, to a school a few minutes from where I work. The staff is dedicated, and caring. Honestly, I never gave her safety a second thought. But, after visualizing the entrance to her school – so close to the cafeteria, often full of children. Well, my mind when left unattended can do some awful things.
And then there is my own school. The school I attended as I child. The school I have taught at for 16 years. The children who are the siblings of others I have taught. The families I have known for years. I think about these children often. I talk about them at home as if they are part of my family. I live each day with the knowledge that I am entrusted to educate, and keep safe, someone’s “heart and soul.” This is not a responsibility taken lightly.
I know the exuberance of a room full of 6 and 7 year olds. I know the electricity in the air in the weeks before Christmas. I know the love in a teacher’s heart when she hides her students in closets, or tells them she loves them.
What I do not know, what I can not imagine or comprehend, is the heart of a man who walks into a school building and kills – 20 children and 6 adults. I can not know. Nor do I want to.
It is not my place to judge him. It is not my place to publicly state his wrongdoing. I have a strong faith, and I leave the sorting out of all that to God.
I know with confidence that those who died, as young innocent children, or their protectors, were welcomed warmly though Heaven‘s gates. They are not the ones I worry about anymore.
As a parent of an ill child, especially one that suffers with a ruthless rare disease like Cowden’s Syndrome, I do not know a day of peace. I worry from sun up to sun down about tumors, and growths, and headaches, and hot flashes, and lingering maladies that don’t suit a 9 year old. I am always at the ready because I don’t know what we will be fighting next. But I can tell you this- there is no part of me that would trade places for a second with these families.
I have the blessing, if you will, of knowing something about our enemy. We have the ability to be proactive. We can battle. We can prepare. We get tired, but we can win.
Evil ripped these lives from their families. There is nothing they could have done better. or differently There is nothing they could have fixed or prevented. They went to school. They went to work. And they died.
So, what can you take from this whole nightmare?
I will take from it that I need to do more of what I do every day. I need to hug my daughter and my husband. I need to tell them I love them every time it crosses my mind. I need to serve ice cream for dinner sometimes, because its fun and silly. I need to look less at the clock and more at them.
I need to prepare for the holidays with a different mindset. I need to organize, but not to a fault. If the cookies don’t get baked – I need to buy them. If the cabinet’s don’t get cleaned, I need to serve extra wine so no one notices. If I can’t cook it, I will order it. And come Christmas Day we will sit as a family. We will count our blessings, and remember our lost loved ones. We will understand that we are all different – and we are all the same.
The battles we face in our house are real. The journey is not always easy, but every day that we are together is a blessing. And there is no promise of tomorrow together on this earth.
Monday will be here in a few hours. I will send my little girl on the bus to school, with an extra lump in my throat. I will head the short distance to my school where I will look at everything with an eye towards awareness. I will look at my students and remember the lumps in their parents throats. I will look at my colleagues and respect that we all have the same goals in mind.
And when my phone rings, and I get the news about my spleen – bad or good. I will take a deep breath and keep on swimming. No matter how tough things can get, it could always be worse.
May God, and all the angels above surround the families and friends of all the victims. And may they all rest in peace.
It has definitely been a week, (ok – month…year) for reflection.
I started this blog in May of this year, after some encouragement from another Cowden’s sufferer. Once I realize how to do it, I was prompted to name the blog. I didn’t really give it much thought. I went with the first thing that popped into my head. And so, “beatingcowdens” was born.
The name seemed appropriate at the time, and I guess it still is. But because situations, and people are ever changing, I don’t think the name means the same thing to me as it did 7 months ago. Back then I had already had my double mastectomy, and I think I still was under the notion that if we got out in front of enough things we truly could “beat” Cowden’s Syndrome, the same way you “beat” a football team.
Well, I have come to realize to “beat” it would be to “defeat” it, and since I lack the power to change my genetic makeup, that simply can’t be. So now, I view it as a process. I spend each day, “beating” Cowden’s. Every time I get up. Every time I go to the doctor. Every time I fight to get better, and recover. Every time I explain to my daughter that it is all about HOPE and determination. This is all part of the process we call “beating” Cowden’s.
So really, what is in a name?
I guess it’s all about perspective – but then again, isn’t everything?
I had plenty of time to think about the whole “name” question today, as Felix, and Meghan and I took a trip to Bethlehem, Pennsylvania. We accompanied the Moravian Churches on a bus trip to tour Bethlehem, and to take in the ChristmasVespers at Central Moravian Church.
After a few hours in the bus, we got to tour the town. We walked up and down Main Street, enjoying the little shops, and a nice dinner. It was a welcome switch from the normal craziness of doctors, and illnesses, and therapy. It was better than filling out paperwork related to the car accident. It was, even through the chilly mist, a nice family day.
Although I must admit, as we gathered into the church for the service I still felt a bit odd. For so many years, and until so recently, I sharply defined myself as a Lutheran. Now, I was looking up at a Moravian star, marveling at the wonders God can work, and the sometimes unusual ways our prayers can be answered.
Personal issues with the Pastor at my home church left me unsettled and in many ways devastated earlier this year. So, I turned to God and asked for guidance as I looked for a new place to bring my family to worship. It was a long process, with lots of prayers, but some time in late August, I drove up Victory Blvd. I made a left and parked. I went into Castleton Hill Moravian Church on what I thought was a whim. I later thanked God for sending me the message I had been asking for. I brought my family the following week, and we have been attending faithfully as a family ever since.
So as I sat tonight in the Moravian Christmas Vespers service, I asked myself, “What’s in a name?”
I know a good deal of Lutheran theology, and I am learning the history of the Moravian church. There are countless similarities, and a few differences – all of which I like. Knowing that no place or person is perfect, and everyone has their shortcomings, I like the welcome feeling I get at each worship service.
So as we settled into the top row of the balcony of Central Moravian Church, I stopped and prayed. I asked God for peace from the constant turmoil that seems to surround our lives. And, as I sat there with my husband and my daughter a deep peace settled on my soul. Here in this almost 300 year old building, I found peace and comfort in the fact that my family was now enjoying church with me.
What’s in a name? Lutheran, Moravian…. I don’t think God cares. He looks for a heart that is right and focused.
I couldn’t get through a day, especially not sharing this diagnosis with my daughter, without the firm belief that we are being watched over.
That feeling. The one where the doors are about to close, and you have to make a decision. Are you going to fight your way out… or give in and let them trap you?
The pile of bills and papers on my desk increases by the moment. I am usually more on top of it than I have been these last few weeks. When I say bills, don’t misunderstand. We can pay our bills just fine. The ones I am referring to are the countless ones from doctors and hospitals who have billed incorrectly, or have not billed our insurance carrier at all. I am not the type to write the check until they have exhausted all options. I need to get to the bottom of that pile. Make those phone calls. Do their job for them.
Ok so it’s not quite that bad, but its getting there!
I could say I lack the time, and to some extent that would be true. They want to speak during business hours. I am available ideally, from about 8 PM until 2AM. But, I think I also to some extent lack motivation. It would be prudent to address this cycle of bills before our next round of appointments next month. Meghan has a few critical appointments during the winter break, and a few at the beginning of December. Not to mention the eye doctor that I still haven’t rescheduled. And the orthodontist – UGH, have to call the dental carrier too!
I am used to this to some extent. I have never known any different. It has been my whole life and Meghan’s too. Only during the last year did it get a name. But the reality is still very much the same. Constant appointments, hoping for no new tumor growth anywhere, followed by a cycle of bills that need to be rebilled and corrected. It always works out. But it does get a bit old.
This month it has been especially hard to focus. Hurricane Sandy rocked Staten Island so hard that you would have to be living under a rock to be unaffected. We are guiltily grateful that we were safe and blessed – but it is hard to get the images out of your mind, or the reality of the people that need help. We all do what we can. Certainly a time to “Pay it Forward” here.
Then there is my dears sweet Grandma. Grandma fell on the day of the hurricane, and spent the week recovering from head trauma in ICU. She is home now, improving daily. She is walking with a walker, weary of her time in bed, and anxious to move as much as she can. She is such a fighter. I am so incredibly impressed by her determination, but that is nothing new. At 92 she is blowing expectations out of the water. She is amazing, and inspirational.
And, so is my Pop. He loves Grandma so very much that it is almost breathtaking to watch. I have had the privilege of spending lots of time with them these last few weeks, and I am inspired.
Ok – December 30th it will be 67 years, but the concept is perfect!
I was lucky enough to spend the night on Thursday. After everyone was ready to sleep and I was settled in on the couch, Pop brough his chair over to Grandma and held her hand as she fell asleep. True love at its best.
Today, a VERY kind nurse. A stranger to us, but a friend of a dear friend came and took the stitches out of Grandma’s head. Like an angel sent to us, she lovingly removed the sutures, and later thanked me. She was awed by the love she witnessed between my grandparents. She would take no money. She just was so thrilled to help. She was our angel on earth today, saving us a potentially dangerous trip to Urgent Care.
Grandma doesn’t have Cowden’s Syndrome. As a matter of fact I am increasingly certain I am the first in my family to inherit the PTEN mutation that causes Cowden’s Syndrome. That genetic defect was handed over to my daughter as well. But Grandma doesn’t have it. I am sure. What she has is an intense, loving, fighting spirit, and a desire to be well. That – I did inherit!
The piles are larger than I like. They are everywhere, and I admit to feeling a bit stressed about the lack of control. But, I am smart enough to be aware of the blessings around me. To be thankful, and have a heart full of gratitude. For it is the little things that make all the difference.
I try not to make a practice of questioning God. He always somehow proves to me He has it all together. But sometimes, it is REALLY, REALLY hard…
Like tonight. I am tired. And I have some nerve saying it. But I am. Tired, and worried – about my family, both immdediate, (like Grandma, who is making physical improvements daily,) and my Staten Island family
We are a week, OK 9 days out from Hurricane Sandy. I STILL know people without power. Gas lines are no longer something you address on your lunch, and those are the minor concerns… the really minor ones.
We are, as I type, being pummelled by a Nor’Easter. There is snow frantically falling. As it falls the trees, shook by last week’s wind are getting heavier. It is only a matter of time before they begin to fall. We are expecting gusts of up to 50 mph tonight.
And all of this would be manageable. If it weren’t for the absolute raw devastation my hometown is trying to endure.
I stayed away from the beach for a week, but yesterday we had the opportunity to do some volunteer work as part of our workday. My trip to Midland Beach was life changing.
I posted the pictures. The ones I saw on the news – of the places I had been. And the streets I had walked. And I thought I had some level of understanding. I was so wrong.
As I drove down Hylan Blvd, and I saw the car windows open on the lot of the dealership, it occurred to me that they had been flooded out. Knowing that they were a good distance from the water my heart really sank. There was a smell of mold, and water in the air. There was dust on the street. There were mile long gas lines. Was this my hometown, or a something out of a war scene?
I turned down New Dorp Lane, towards Miller Field, where my girl played soccer with her friends for a few seasons. We always joked as parents about the chill in the air so close to the water, as we cheered on our “Ladybugs.”
Well it was still cold. And there was no cheering.
The parking lot held a Red Cross truck, with food donations, a warming bus, several other food sites, some insurance vans, and lots of people milling about. Maybe like a movie shoot – except this is real life.
I was looking for my colleagues, who I thought to be closer to the water, so I walked. As I walked I could not help but stare. I thought I had seen the devastation. It wasn’t until I saw – that I was even able to process a FRACTION of the scope of this tragedy. I had no one directly connected to me who lost a home. Friends of friends, sure. It’s Staten Island, and everybody knows someone, but my direct connection was minimal.
As I walked and absorbed what I was seeing. As I let it pierce my subconscious…I felt like I was walking through the middle of someone else’s really bad dream.
On the windows of the houses closest to the beach, were stickers. Red meaning uninhabitable, yellow meaning proceed with caution, and green meaning its ok to occupy. Mind you these were markers of structural soundness with no consideration of water damage. I saw very few green ones.
A few block farther back there were makeshift streetlights, because no one has power. There were police cars, checking ID at the corners to protect these devastated people from looters.
As I got back in my car to head home I took a left instead of a right. I ended up deeply imbedded in sights unlike any I had ever seen. People’s entire lives, on their front lawn. I had to photograph, simply because the reality needed to be shared – with my daughter, and others.
The front lawn of someone’s home
It took a few minutes to get back to the main street. Moving slowly and respectfully as I passed a charging station, tents of water and food, people frantically roofing homes… I prayed.
And another one…
When I got back to Hylan Boulevard, I crossed over, headed for home. I passed Meghan’s former endocrinologist’s office – supplies in the parking lot – seemingly gutted. The water had devastated far beyond its apparent reach.
There are collections everywhere. At my school, at the church of my youth, seemingly everywhere you turn. Yet I am not sure all the supplies are getting where they need to be. I am not sure who is going to help them. Really help them put their lives back together.
That is one small corner of the loss in my hometown. Had I continued to travel the coast I would have seen similar scenes replayed over and over. God Bless the Sanitation Department for this herculean task. God help us all as we have generated such an excessive amount of trash in such a short time period.
The work day ended then, and I headed to my other life. To pick up my beautiful girl. To visit with my grandma. To vote, and to prepare all things necessary for the next day. In our house we have some sense of normalcy.
Even though our own normal is peppered with Cowden’s Syndrome, illnesses, and scans, and growths, and regrowth – it is our normal. And once again, I would not wish to trade places with ANYONE.
God, seriously though? As I pray for the hearts, and the minds, and the bodies, and the souls, of my fellow Staten Islanders – a snowstorm? Please… help them Lord, to stay safe and warm and dry. Wrap them in a blanket of Your love, and let them be warmed by the power of our prayers, unceasing.
I was looking for something to describe my mood today, and there it was. Simply stated by a brilliant man, and there on the “Perpetual Optimism” Facebook page.
beatingcowdens 