My mom has always loved rainbows. I mean she REALLY loves them. She would take us all outside when we were younger to look at them after a storm. She would sometimes pull the car over so we could see them. I remember always knowing they were special. But, like so many things in life I think I am only starting to “get it” now.
What a June this has been!
There has been rain and more rain. It only started to feel like summer a few days ago. And while I am sure we will all be complaining of the heat soon – it is nice to see some sunshine.
As I walked out of my house to make a quick run to the store tonight there was rain. Lots of it. I went back in for my rain coat. I had to be ready to pack lunch for Meghan as we head to her appointments tomorrow. So, I had little choice.
As I was listening to the all familiar sound of the wipers on the windshield, I found myself looking for the rainbow in the sky. There was sun, there were clouds. There was rain. I knew I would find it if I looked.
I thought about these last – almost 2 years since the Cowden’s diagnosis. I thought about the twists and turns and sleepless nights. The days when I was sure the sun would never shine again. Yet – somehow it did.
I thought of my husband. My strength in tumultuous times. I thought of how he began school 2 years ago this week, setting out for his electrical licensing exam, never knowing three short months later life would be forever altered with mine and Meghan’s diagnoses.
I thought about how the course that was only supposed to take a few months, and the test that should have been in early 2012 ended up being in January of 2013. I thought of him trekking to school two nights a week, and studying every spare moment. I thought of how flat out proud we were as he passed the written exam with ease.
Through tests, surgeries, scans, cancer, agonizing waiting – he persevered.I am not sure I could have kept my focus. But he took it a step further.
Perhaps it was out imminent family health crisis, or maybe his own internal motivation, in June of 2012 he began his journey towards better health on Isagenix.
While continuing in school and under extreme stress, he has managed to lose, and maintain the loss of about 45 pounds.
meghanleigh8903.isagenix.com
He took the second and final part of the exam on June 4th. The passing score came in the mail Monday. Now all that stands between him and his Mater Electrician License is some tedious NYC paperwork, and undoubtedly some more fees…
As I looked for the rainbow I couldn’t help but think, that even though they are sometimes hard to see, and even thought the days are sometimes dark and cloudy – they are there. They wonder, the beauty – all perfectly placed to be appreciated. If we look…
Tonight’s rainbow 6/26/13
I am so proud of my husband. I am so grateful that he is so often the rainbow on that cloudy day.
My mother taught me to look for rainbows. I get it now Mom. I get it.
My husband helps me find them.
I am a lucky girl.
Thyroid sonogram tomorrow – 10 AM.
We’ll be looking to make our own rainbows along the way.
Even new beginnings start to become normal occurrences, and things begin to wind their way into the much anticipated summer vacation. New beginnings can’t stay new forever, and as the school year comes to a close we have spent some time reflecting on the twists and turns that caused it to end much differently than it began.
Meghan finished fourth grade with her normal grace and poise – and I am sure good grades. (Report cards are given tomorrow.) Although she finished the year alongside different students, and in a different building then when she began, she finished with the same bright smile and cheery, friendly personality, that quickly endeared her to the young and old in her new environment.
There are some people she misses from her old school. There are some people I miss. There are circumstances neither of us miss at all.
This wasn’t the plan. But really, as I keep learning – we don’t actually get to plan everything.
Learning experiences. That’s what they are.
You never really know what tomorrow will bring.
Make the most of what you have where you are.
Trust your heart and your gut. If it feels broken, it probably is.
Reduce your stress. Eliminate toxins. Its good for the body, mind and soul.
No experience is wasted. No interaction is a loss. People come in and out of our lives, some for a season, some for longer – but always for a reason.
Finally, not a summer of overwhelming homework, but not a summer of fun-filled camp days either.
Thursday we visit Sloan Kettering again. Time for the thyroid sonogram. How could six months go so fast? And as the appointment closes in she starts to articulate her fears. They are the same as mine. I should know that she is smart enough to process. To understand that they are looking for thyroid cancer.
On Friday we see the vascular surgeon for a follow up, and then a genetics follow up. Meghan loves to visit the geneticist. She says, quite correctly, that he saved both of our lives. I remind her that she saved mine. She smiles, and hugs me, even as she says quite matter- of -factly, “well when I get breast cancer – at least I know they will catch it early.” Ever wonder what it feels like to be sat on by the ‘elephant in the room?’ Well, as I gasp for breath – speechless, I give her a hug. No empty promises to offer. I can’t. I won’t. She would see right through them anyway.
This is our life. This is how our summer begins, and between the two of us, it doesn’t really let up. There is little time for camp, or beaches. We will sneak in a few play dates. We will get away for a few days in August. She will read a few great books. We will spend a lot of time on the expressway, or the bridge, or in waiting rooms all over Manhattan.
This – this is why we need a life free of toxins.
This is why we eliminate unnecessary stress.
Cowden’s Syndrome carries enough stress of its own.
You see this will be our life – forever. And the sooner we adjust, and find the balance, the sooner we learn to roll with the reality – the better off we will be.
Forever.
Forever is a long crazy concept. Forever – while trying not to plan too much. Forever.
Forever has this awful way of disappearing sometimes.
I used to think Pop’s vegetable garden would be around forever.
GiGi and Pop
Well, actually I guess it is. I just grow it for him at my house now.
It’s June. It doesn’t feel like it. At least the weather doesn’t. It’s cool and rainy. I guess that’s OK for now – while we are still wrapping up school.
It has been a long week.
I don’t usually leave my blog unattended for so long. I am behind at writing. I am behind even further at my reading. It seems the days just blend together lately.
It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall. There isn’t much time to be still.
Well – in another 2 weeks it is!
It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever. You are grateful for the citizens, and politicians alike that fought relentlessly. You are thrilled by speed bumps, but you still want that stop sign. You celebrate with a glass of wine – or two.
It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen. You are the mother. You will get by.
It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable. Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90. You balance those PT appointments with swimming lessons, all in preparation for the team she will join. The team she is desperate to swim on successfully, and God willing – pain free.
It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician. It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face. And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine. So, you take a chance and toss the Celebrex to the side. Hoping maybe, just maybe she can get by without it.
It’s June and its raining. You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain. Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it. Celebrex it is.
The war rages – all the months. The battles are won and lost on a regular basis – but the war looms large. I don my armor – a large binder of medical facts, bloodwork, and reports. I gather my inner strength.
It’s June. Summer vacation is coming, but there will be no camp in our house. It doesn’t fit in with the schedule.
Every six months. Every doctor. Forever. Mine, and hers. Different doctors. Different times. Different facilities.
I am getting better at the scheduling. I have learned to bunch them together. So, we go in February and again in July.
For Meghan it’s the thyroid first. That foreboding nemesis. Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist. That’s just the last week in June.
Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…
There will be 15 appointments before the 2nd week in July. That’s if every one goes well.
This is how it has to be. We have to work, she has school. We can’t have the appointments all throughout the year, so we must endure them all at once.
It’s June. I am already tired. Wrapping up one full time job to focus on another. I feel my anxiety rising.
Getting all my rest. Gathering my inner strength. Armed and ready. Kicking Cowden’s to the curb…
First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.
Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.
I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.
By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.
In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.
In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.
In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.
In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.
Then – just about when I was ready to turn 30 – we had Meghan.
Disney 2012
Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.
In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.
In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.
In my 30s I learned how to balance two full time jobs, as a mother and a teacher.
In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.
In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.
In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.
In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.
In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.
In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.
In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.
In my 30s I learned what it was like to hear the words “You HAD cancer.”
In my 30s I learned which body parts are “extra.”
In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”
So much has changed, and yet at my core, my heart – I am the same.
I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.
I know life is not fair.
I know God is Good.
This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.
I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.
Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.
So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.
This is really how I view the race against Cowden’s Syndrome
Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.
I do the best I can to show her that its important to stand up for what you believe in.
I think she gets it. I know I do.
The 30s have been a ride, and I still have a few more months to go.
In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.
If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.
So my fourth grader told me today that her State Exam was “tricky,” but she thought she got only 2 wrong.
I have absolutely no idea if her assessment is accurate. I am only grateful that for one afternoon, her anxiety was lower.
Last night before she went to bed, we spoke a lot about testing, and my expectations for her.
As I have said before stress, and chronic illness just don’t mix, so I am careful with my words.
So, I explained to her that her best – regardless of the attached number – will ALWAYS be good enough for her father and I.
Wise beyond her years, she quoted a former teacher who apparently told them, “Your best is good enough for your parents. Your best is good enough for me. Now make sure your best is good enough for you.” This followed by a cheery, “Chill out – You got this!”
As she lay her head down, last night, and tonight, she repeated those words to me.
There really are so many teachers who “get it.” The kids are so much more than any number on a piece of paper.
It is such a challenge being on the parent end of things.
But, at the end of the day, these aren’t the tests that matter to me. Not really.
On Monday the 1st of April there were 13 vials of blood. On Saturday the 6th there were 15 more.
This weekend there was a 24 hour urine test, and 7 more vials of blood before school Monday.
These are the tests that keep me up at night.
These are the tests she has no control over.
These are the tests whose scores really do matter.
A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.
I was right.
I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.
One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”
We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…
My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.
Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.
And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.
I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.
Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.
She can keep her award…
At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)
I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.
This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.
Finally it was time to head to the operating room.
I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”
They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.
Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.
The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.
I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.
So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.
And what a year it has been.
A roller coaster ride!
A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.
The weeks of recovery went smoothly, with lots of help from mom.
And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.
This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)
I really did love my Hyundai
It included Grandma’s fall, and ongoing recovery.
It included circumstances that caused me to step away from my church, and blessings that led me to a new one.
This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.
This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!
This year we vowed to make a difference,
This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.
This year was only the beginning of the rest of our lives.
One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!
Meghan left tonight for the Father Daughter Dance with her Dad. I am always so grateful for him, but especially on nights like tonight when he can show her the time of her life. She needs that time – to be happy and carefree. She needs time to just be a kid.
Father Daughter Dance November 2009
I looked back on some old photos from dances in years past. I know it sounds cliche, but I can not believe where the time has gone. It stung especially I think this weekend, as my girl lost her last baby tooth, and came to the realization that Santa, and the tooth fairy, and all that magical mystery of childhood isn’t “real” in the way she had thought.
Father Daughter Dance November 2010
I think she took it better than me.
I cried a lot this weekend.
I think I am angry too if I am honest. I think I am not just sad, but angry.
And that’s ok. I have to let myself feel even the ugly emotions when they are in there.
I am angry about Cowden’s Syndrome. I am angry about the cloud it carries, even on the sunny days. We always seem to need to pack an umbrella in some game of anticipation – not designed to be won, just played. Forever.
I have said before, and I will say again – if it was just me…
Father Daughter Dance November 2011
But it’s not. It’s her too. That is reality, and it really does torture me sometimes.
All parents feel pangs of sadness as their children grow. And, Meghan being my one and only, I am sure the pangs sting extra hard. But, there is more than that. We deal with something most parents don’t.
As her age increases the looming cancer threats that Cowden’s carries with it increase as well. At her age, the biggest threat is thyroid cancer, and we are battling the beast head on. We have dealt with, and continue to fight with the AVM in her knee, and we have gotten past the lipoma in her back. All thanks to Cowden’s Syndrome.
But, as she grows and matures, so does her body, and with it her wisdom.
She looks quizzically at my silicone breasts and her own developing ones. She wonders. Sometimes to herself. Sometimes aloud. When will it be my turn?
She asks if she will be able to have children, or if she will need to have her uterus out first. She asks that if she does have children… do they have to have a PTEN mutation? Do they have to have Cowden’s Syndrome?
Too many questions to flood the mind of my 4 foot 11 9 year old. Too many questions for the string bean with the developing body. Too many worries for my baby girl.
I am angry. But thankfully she is not. She takes each day as it comes. She accepts the eventuality that one day the biopsy will not be negative.
Father Daughter Dance January 2013
I sheltered her for a long time, but they made me lay it on the line this year. So we had the “cancer” talk in the waiting room of Memorial Sloan Kettering last month. I told her there was no guarantee she would get cancer. So she spun the question and asked me how many people with Cowden’s I interact with have NOT had cancer. The number is small.
So we talked about the benefit we have that others don’t. We talked about how constant screening means we will beat whatever beast tried to get at us. We will be vigilant.
We will win.
I get angry sometimes. She just finds other ways to make me smile. She keeps my heart soft. She is my rock. Wise beyond her years, and still a kid at heart.
I hope you and Daddy dance your hearts out tonight!
The new normal… that is normal AFTER the Cowden’s Syndrome diagnosis, revolves around living life 6 months at a time.
On Wednesday I got word that I can keep my spleen for at least 6 more months.
On Friday, we got the anxiously awaited news that Meghan‘s thyroid biopsy was benign. We return for another scan in 6 months.
There is 6 months in between visits to the vascular surgeon. 6 months in between the endocrine surgeon, the dermatologist, the rheumatologist, and the general surgeon too. There are more, so many more, but you get the idea.
See you in 6 months. So we can do it all again.
I am trying to slow down. Instead of waiting for the next appointment, I am trying to enjoy today. I am trying to silence the giant stopwatch in the back of my head, ticking time away until the next appointment.
Truth is if I don’t pull the battery out of that thing, I may lose my mind!
It’s not all neat and clean, this whole Cowden’s mess. Although when I stop to think about it, it is readily apparent that life is far from neat and clean.
Reality is that life is complicated.
Life carries with it no guarantees.
Life is what you make of it.
The struggle for everyone is different. Mine is a struggle with my mind.
Beating Cowden’s is not like training for a sprint. Nope. We are training for a hilly marathon in the snow. We have to build the endurance – and find a way to enjoy the training. Even the really painful ones.
See, if it was just me suffering – it would be easier. But it’s not. And truth be told, having my kid ask me every night last week if I found out yet “Do I have cancer, Mom?” Well, that was downright exhausting, I am NOT looking forward to doing it again, in 6 months, or ever. But, reality tells me there will be more biopsies on the horizon.
So we spent the weekend visiting with some family, dusting off a few things that hadn’t been tended to, finally opening some Emails, and important documents about the new car (a few weeks late) and just trying to readjust… to down shift from acute worry into chronic worry.
Well, that isn’t actually the goal. The goal is for me to shelf the worry altogether… but baby steps please.
Ironic that I am currently the thinnest I have ever been, and in the worst shape of my life – simultaneously. I fell on Saturday. Over the dog. She was on the sheets on the basement floor that were waiting to be washed. I ended up on the floor, my knee and wrist banged up, and my back in spasms reminiscent of the car accident.
My calendar tells me we have about 5 weeks until the next major doctor cycle. Good thing. I need a chiropractor to help me move. and I need a few days without other appointments in order to get there.
The 6 month thing… well that’s not just twice a year. That would be neat and clean. No, the 6 month thing seems to just be ongoing. We try to make the breaks as long as possible. You know, so in between we can deal with the new adventures life tosses our way.
I am going to focus, and keep trying to get this one day at a time thing down. I am going to stop and look around more. I am going to try to enjoy the ride. It won’t be easy. But I am on it. I promise.
I need a new pair of sneakers for this marathon training.
I headed home at lunch with the need to send out this message of thanks, to those of you who thought about us, prayed for us, and kept us close to your hearts.
I spoke to the nurse this morning. She said the pathology was BENIGN! I don’t think I heard much else she said, as the tears just started flowing.
We are not, nor will we ever be “out of the woods.’ They will scan her thyroid every six months indefinitely. But I am learning with Cowden’s Syndrome to accept the “6 month leash” as a win.
Right now she does NOT have thyroid cancer.
Right now she does NOT need the thyroid removed.
Although the MOM in me in some ways wants it gone BEFORE they ever tell me its malignant, I do understand the doctors reasons for waiting.
So, with a renewed appreciation for the power of prayer, and a belief that we have MANY guardian angels watching over us… I say THANK YOU ALL.
Tonight, we celebrate the small victories because we are fully aware how important the little things are.
I get to keep my spleen for 6 more months. (And maybe even longer!)
The surgeon said that the hamartomas are there. They are large, but they are stable. Stable is a nice word. So, because they are stable it implies they are benign. This is another nice word. The game becomes seeing if they remain stable. So, in 6 months I will have another MRI. If they have changed – it comes out. If they haven’t we can continue to talk about keeping it.
Makes me wonder when keeping our organs became cause for celebration.
You know I have wondered on and off how you actually “beat” Cowden’s. Is it by coming through with the most organs still intact and cancer free? This is such a strange, relentless disease. It’s research, while still in its infancy is coming. But, I have to wonder how much more they will know a year, or 10 years from now. And, whether I will like any of it.
We are waiting. And we know that we are not alone. We are waiting for Meghan’s results, and its nail biting, agonizing waiting. But, Felix and I talked tonight and wondered what news would make us happy. There was no easy answer.
See, last year – January actually – when we transferred the slides from her November 2011 biopsy to Sloan Kettering, the endocrinologist whose team reviewed the slides told us the cells were precancerous. They had scored a 3 out of 5 on some scale they use. He told us they would turn. We just couldn’t predict when.
So, in June when he called and said he wasn’t thrilled with this nodule (one of many) on the left side we were anxious. But he said, having reviewed her sonogram she could wait 6 more months to be scanned again.
So, here we are 6 months later. Tomorrow will mark an agonizing 2 weeks since we went for this sonogram. Waiting. Worrying. Wondering.
When they tell you its “when,” not “if,” it changes things. No matter what they tell us there will be an anxious, uneasy feeling attached.
This is the game with Cowden’s Syndrome. It’s almost like a time warp. A terrible cycle of wait, test, worry, results… Wait 6 months and repeat.
Six months seems to be all you really get. Well, now what I have lost a few organs, I get a year on those follow ups. But everything else is 6 months. For both of us.
I tried to sync them up. So that maybe the worry wouldn’t seem continuous. But it hasn’t worked yet.
I try not to think too far ahead. You know what Mom says about planning anyway.
And to think about this in constant 6 month cycles, well… forever. It’s a little too much to manage sometimes.
So, we take it one day at a time. Sometimes one hour. Or, on this never ending road we call Cowden’s Syndrome – one step at a time.
beatingcowdens 