I looked up at my Christmas Tree this week and was struck with the incredible sense that I would love to take it down. Now.
I know that’s wrong for any number of reasons, but I have always been candid here.
In the 10 days since we have buried my father there has been a whirlwind of papers and errands. There have been things to organize and sort. There have also been “regular” things to do, as I pretend to feel like I am part of the world going on around me.
And as I sat in the chair last night trying to absorb the beauty of the brightly lit tree and the litany of memories spread out across it as the ornaments we have collected through the years, I couldn’t shake how disconnected I feel.
This year the reasons are kind of obvious. I am starting to think its likely to get worse before it gets anywhere close to better.
Then my husband reminded me about last year. He reminded me about Hurricane Sandy, and the fall Grandma took, and the days in ICU. He reminded me about the car accident last November, and the months spent sorting out the paper, aggravation, and pain in my back.
It was right after Christmas last year that we had the “Santa” talk with my girl. My one and only.
So, I guess I knew all along this would be a year I had to look a bit harder for the magic. We looked hard in Disney in August. And we found it.
But, by the time we put the tree up this year my father lay dying in the hospital with less than a week to live. That day our family turkey and Felix’s special gluten free stuffing warmed the house with a soothing aroma. I heard the Christmas tunes. I helped with the ornaments. And I felt like I was in a bad movie.
Meghan had suffered with migraine headaches most of October and November as my father was sick. An MRI on November 20th confirmed the migraine headache diagnosis and the medication – once doubled – finally brought her some relief.
I couldn’t get the cards together this year. I just couldn’t do it. Maybe some time around Valentine’s Day I will feel up to a greeting. I ordered the food for Christmas dinner too. Yep, its better for everyone anyway, as I am a rotten cook. And the family is bringing dessert. I bought gifts for the children. Although even those were mostly purchased online. And so many of the adults are getting gift cards to their favorite stores.
Last weekend Dad’s mom was in the hospital. Today she is back at her home, but she is worn out.
And as I size up the dust that has gathered in every corner of my home I strive to remind myself that Baby Jesus was born in a stable, and slept in a manger. Somehow, as long as we open our hearts to celebrate the real meaning of Christmas, the miracle of the birth of the Baby Jesus, it will all be ok. Somehow.
So tonight as I took Meghan to her 6 month thyroid check up; the appointment where they monitor those pesky precancerous nodules, I was reminded yet again that it is just not ours to control. After the doctor examined her, and her neck, he asked for a tape measure. He measured “significant” growth since June in one of the right side nodules. “No point in wasting time with a sonogram, I need a tissue sample so we will schedule a biopsy.”
My heart skipped a beat.
“Where did you get that necklace Meghan?” asked the nurse.
“My Grandpa Tom gave it to me. He died this month from pancreatic cancer.”
Sometimes silence really is deafening.
“It may take a few days to get it scheduled Mrs. Ortega. You know, with the holidays…”
This is the letter I send in my Christmas cards… shared for my “on line” friends.
“So do not worry about tomorrow, for tomorrow will bring worries of its own.” Matthew 6:34
It is hard to imagine another year has passed, and here we are again – eagerly anticipating Christmas and the birth of the baby Jesus. This year the Christmas season is peppered with even more emotion, as we watch our friends and neighbors rebuild from the effects of “Super storm Sandy.” Those of us whose homes were unaffected live in a state of uneasy gratitude, as we do what we can to “Pay it Forward,” to those who have lost so much.
Life in the Ortega house continues to be one of adventure. We are blessed. Meghan excels in school, and loves to swim and dance. Medication allows her to move her body without pain. We are grateful each day for each other, as it is that bond that allows us to weather the storms of life. And there have been some this year! Some time in early spring, Felix joked that I should start on my Christmas letter. He wasn’t kidding.
We began the year, Meghan and I, addressing all the preliminary appointments connected to our new diagnosis of “Cowden’s Syndrome.”
We needed to be set up with oncologists, endocrinologists, the geneticist, and for me, a beast surgeon, an endocrine surgeon, and a GYN oncologist. We can’t use the same doctors, because she needs pediatrics, and in most cases we can not even use the same facilities because our insurance carriers differ. We have been scanned repeatedly – each MRI separate. Sonograms of every body part you can imagine. All of this to learn that this testing will take place in 6 month cycles pretty much indefinitely.
There is so much overlap as to how everything came together this year that it is even hard to summarize. I feel like sparsely a week went by without an appointment – many of them in NYC. I laugh now at the days I swore I would NEVER drive in the city. I don’t use the word “NEVER” much anymore.
In February, Meghan endured her 4th surgery for the arteriovenous malformation (AVM) in her knee. The recovery this time included crutches, and the realization that there was blood leaking behind her kneecap. We were sent to Boston Children’s Hospital where she had a consultation in April with “the doctor who will do the next surgery.” Again, not if, but when. So we wait. She will be scanned again in February to determine the status of the very stubborn AVM. Cowden’s Syndrome complicates any vascular anomalies.
In March I underwent a “prophylactic” bilateral mastectomy. After consultation with several doctors, it was determined that the 85% risk of breast cancer that Cowden’s carries with it, coupled with my personal and family history, made the surgery a necessary next step. Both the surgeon and the plastic surgeon were on site as I opted for immediate reconstruction. The surgery turned out not to be so prophylactic, as my pathology showed I already had cancer in the left breast. The best thing that came out of the surgery was having my mom hanging out in my house for a week – just chatting and giving me a much needed hand. Thankful to God, and for my surgeon, and my husband, for pushing me to get it done – we caught it in plenty of time, and no treatment was needed.
Continuing with all the initial appointments and scans, a suspicious polyp was found in my uterus a few weeks later. A trip to the GYN oncologist led to a conversation that left me with little other option than a complete hysterectomy. So, about 10 weeks after my breast surgery, I headed back to NYU for a complete hysterectomy.
A month later we took Meghan for her thyroid scan to Sloan Kettering. We were told that one of her many thyroid nodules was close to a centimeter and starting to dominate the area. So, our initial “return in a year,” changed to – “we will rescan her in 6 months.” December 27th we go.
Subsequent scans of my interior, (I keep telling them to leave well enough alone – but they believe in taking the used car to the mechanic,) have revealed 4 hamartomas on my spleen, and a small cyst on my kidney. Those are benign, and common in Cowden’s Syndrome, but need to be watched because the potential for other complications exists. I will also be rescanned the last week in December – but after losing so many organs this year, I warned them that I am rather attached to my spleen!
In the midst of our medical “stuff,” life continued around us. In June our hearts were broken by the loss of Ken’s dad, or GGPa, as he was known to Meghan. A man of such compassion, and love – a gentleman, and a GENTLE man – will be truly missed. Our hearts will never be quite the same.
Just to keep things interesting, as “Super storm Sandy” raged around us in October, Grandma Edith, Mom’s mom took a fall down the basement steps. No one is quite sure exactly what happened, but it is evident that the angels held her that day. She suffered a serious head wound, and severe bruising, but broke nothing! She spent days in ICU, and returned home the end of that week. With the help of a high quality staff of physical and occupational therapists, as well as the never-ending love and care she receives from Pop and my Mom, she is getting physically stronger every day. I admire my grandparents. As they approach their 67th wedding anniversary, they stand together as examples of marriage as God intended it. They are role models to us all.
Their marriage reminds me that God gave me a great gift when he sent me Felix. I can say that we share such love through God’s grace – that I can not imagine my life without him. He is my soul mate – and my sanity!
I guess I leave you with – to be continued. No words of wisdom this year. We are trying our best to take it one day at a time. The tree is up. We have our hearts and our heads focused on what matters. We certainly have had plenty of lessons!
We would love to hear all the things that are new in your home!
Warm Christmas Blessings,
Lori, Felix, Meghan, Allie & Lucky Ortega
“Sometimes your blessings come through raindrops, sometimes your healing comes through tears….Sometimes trials of this life; the rain the snow the darkest nights, are your mercies in disguise.” –Laura Story
The cards were in the mail Sunday night. I was getting it together.
Monday I was leaving work, ready to make one stop at a friend’d house before getting Meghan.
I stopped at the stop sign. I looked to my left down the one way street I have traveled so many times before.
I was clear… and I drove.
3/4 of the way through the intersection…
I didn’t see the SUV until it was in my rear driver side door. I spun like an unwanted ride on the teacups and ended up on the grass and curb facing the wrong way.
His car ended up a block away. There had been no braking. No horn. The impact shut his car down.
As I managed my way out of the passenger seat I was clearly stunned – full of so many thoughts.
The trip in the ambulance with an “angel” from Meghan’s school who happened to live in the neighborhood was surreal.
I have laughed and cried a lot over the last 24 hours. I am grateful that I am walking and moving. I am tolerating the muscle spasms and bruising.
As I spoke to the claims adjuster today and they explained that the claim would be backlogged due to the hurricane… I understood. What I didn’t understand is how the guy speeding through the school zone is right, and I am wrong… but I may never understand that.
The thought that gave me peace tonight… in a year that has been so tumultuous, was that maybe – since it was dismissal time so close to my school… maybe I had to take the hit so someone’s kid didn’t have to. Maybe… just maybe.
So I think of my little love.. and I am so happy she is safe. And maybe that thought is where I will draw my peace.
“Sometimes your blessings come through raindrops…”
Now, if you’ll excuse me – I need to head out for a sonogram of my spleen… seems they need to make sure those hamartomas weren’t impacted by the crash….
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.
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.
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.
There are people you meet in your life – and even some you don’t actually meet… that make a world of difference for you.
I saw this today and it made me think of some of the people I have met over the last year. Some of them don’t talk to each other any more, but I talk to them all. It’s just who I am.
Today I couldn’t get a phrase, shared by one of those on-line friends, out of my head.
This has been a tough week for me. It happens to the best of us. I know I am usually pretty positive, but this week it has been harder than normal. So when I shared some of my struggles she said to me…
I thought about it for a while. And you know what? It made perfect sense. She has had plenty of struggles of her own. Actually, she has had more than her fair share, but she brings it all to the table in the Cowden’s support group. She shares her ups and downs, her struggles and celebrations, and she just keeps right on swimming.
I think, to some extent that is what we have to do. Look it in the face, whatever it is… take a deep breath and keep on swimming.
Today is my birthday. I turned 39. And I am proud to say it. I have no intention of staying here either. Next year will be 40, and so on and so on.
But with my birthday comes a flood of emotion. This is just over a year since my Cowden’s Syndrome diagnosis. It has been just over a year since mine and Meghan‘s lives were forever changed by the news that we carry a PTEN mutation, and that our bodies are inclined to create benign and malignant tumors – all over.
It has been eight months since the “prophylactic bilateral mastectomy,” which turned out to be a life saving operation when the pathology revealed stage 1 DCIS. I have almost adjusted to “the new girls,” but with each change of season comes the realization that the landscape of my body is forever changed. Old familiar sweaters need to be replaced. Nothing is quite where it used to be.
It has been six months since the complete hysterectomy. The one Cowden’s Syndrome called for – way before its time. So as my body celebrates 39 – my hormones clock in somewhere around 55. And with no hormone replacements in the cards, we are learning to get used to each other. Not uncommon for me to go from a turtleneck to a t-shirt. Good thing there aren’t too many clothes to pick from.
My birthday has been charged with emotion for years. Ever since we lost my sweet cousin Meghan to Leukemia at the age of 6, it has been a harder than normal day. Despite my best efforts, at some point emotion overtakes me. I have always been grateful for our deep connection – so deep that I named my daughter for her. But, somehow 21 years fade and the feelings are that of yesterday. Oh, how I miss her.
My Meghan faces scary appointments in the upcoming months, as we determine if her thyroid nodules are growing or stable. Her health is always a tenuous issue, but her smile and positive attitude make it easier to press on. I wait for word on my spleen and my kidney… silent benign tumors that will either prompt more organ removal… or not.
GiGi fell during the storm. Two weeks ago today we were very scared. Today she walked with help around the dining room table. Her feet still work, she was excited to discover. Surely this is a realization worth celebrating. Happy birthday to me.
We went to Midland beach today with a few small things. A donation a friend from New Jersey had sent, as well as a few things Meghan and I picked up this morning. Sometimes paying it forward is the best birthday gift you can give yourself. If everyone gives just a little – time, money, supplies – whatever you can… it makes a world of difference. It matters.
These people. The people of Staten Island, and Breezy, and the Rockaways, and all the other coastal communities devastated by Hurricane Sandy, they certainly are showing their ability to…
Such an intense day. At times I laughed. At times I cried. At times I was proud. At times I was sad. Life is changing every single day. The ones you love, the places you are comfortable, and the people you are comfortable with – all transient.
I looked over my blog today. It has truly been a journey. And if you got this far you are reading my…
Tonight I am reflective. I am enjoying my family and my wine. I am thankful. And I am tired.
It has been a long year. But a productive one. A year unlike any I had ever imagined. The journey here is far from over. I am thankful for my close friends, and my cyber friends. I am thankful for those of you who read, who I will never know. I am thankful for reality checks. I am thankful for celebrations, and laughter and tears – for they all make me who I am.
This is definitely a marathon, not a sprint. Cowden’s Syndrome, like life, requires patience, flexibility, and endurance, as well as a well-rounded view of reality.
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.
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.
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 left my house at 8:25 this morning. Admittedly it was later than I had wanted, but I struggle to clear my head in the mornings these days.
I drove for a bit, to all the local gas stations. I even spent a few minutes on line at one. Then I had my friend Siri call to make sure they had gas. Nope. Off that line too.
I drove past a station with a line that seemed manageable. I asked a woman if they had gas. She cried. She said, ” I have been here since midnight waiting. The delivery just hasn’t come.”
I finally ended up at Costco. I knew they had gas. If you are not from Staten Island, it will mean nothing to you when I say that the line began at Richmond Avenue by Best Buy, wrapped around Forest hill Road, onto Richmond Avenue, and the BACK into the Costco lot. I estimated 4 hours when I got on. It was 9:42
Four hours in the gas line is a LONG time. I had more time alone with my thoughts than I like. Thankfully, I had the iPhone to keep me a bit busy. But in between games of scrabble, there was way too much time to think.
It was flat out unnerving, almost surreal to be on a gas line of this magnitude. No matter how I tried, I couldn’t wrap my head around it. I just knew I needed a full tank to get me through the week, so I waited.
I thought about the hurricane. Hurrican Sandy. My mind wandered to Hurricane Katrina, and the news coverage I watched I remember feeling like it was so far away. No more.
The recovery efforts taking place miles from my home, in areas I have frequented my whole life. I thought about their homes, and then I thought about the people- returning to find their homes uninhabitable. And those who could get in, well – they had the job of a lifetime ahead of them.
I thought about the mother, whose 2 babies were ripped from her arms in the rising waters. The babies, safe in God’s hands. The mother – tormented for all of her days. I prayed one of the many prayers I pray for her each day.
I thought about friends from work. Their losses. One with a new baby on the way. Waiting to have the FEET of water that entered their home addressed. Others who suffered damage to their own homes, and the ones whose parents or relatives homes were destroyed.
I thought of the trees that make my neighborhood so spectacular – ripped from their roots.
It was a really long line. So I had time to reflect on the courage, strength and resiliency I have seen. I thought about the downed trees, and the friends STILL without power of heat.
I though about the looters, the liars, and those taking advantage of the tragedy. And I truly hope God has a place all picked out for them.
I thought about my little girl, and all she has gone through, and how she continues to make me so proud. Today she put some of her favorite stuffed animals in a bag, “For the kids who lost everything.’
And of course, all thoughts always return to Grandma. 92 years old – most of it spent right here on Staten Island. She and Pop married in 1945, and moved into their current home in 1956.
Grandma came home last night. Late. So there was confusion as to exactly where she was, but we hung together as a family and worked out some of the kinks last night. I was anxious to see her, and Pop.
I thought about this year. The magnitude of so many things taking place in such a seemingly short period of time, and I remember why I am so tired. The diagnosis of Cowden’s Syndrome – so permanent and life changing, and even on top of that, this year has seen surgeries, cancer, loss of loved ones, more cancer scares, natural disaster… and I am only getting started.
I will shop for Christmas, but mostly I want Christmas to come, because its time to celebrate the birth of the Baby Jesus. We need something to celebrate.
1:35 (3 hours and 53 minutes) Hungry and tired, I pulled up to the pump. I don’t know – or care how much the gas cost. I only know my tank is full – at least for now.
Home for a quick shower, then right to Grandma.
Family. It always mattered a lot. It matters now more than ever.