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.
There are a lot of people who pray for Meghan. And we are grateful for every single one of them. But, there are a special group of ladies…
Well, between them they have 9 children – 3 each. They all have incredibly busy lives, and all of our lives connected some years ago. We don’t see each other all that often, and rarely in the same place, but they are my prayer group of sorts. Our children are connected, in a bunch of different ways. Our lives are intertwined, and we have vowed to support each other.
We all seem to share the belief that –
And, with that belief comes responsibility.
So, they were among the first people I shared my blog with in its infancy last year. They are the ones I turn to and say… lift this up… PLEASE, and without fail it is done. And they do the same for me. We all pray fervently for each other. For friends, and family. For people we know well, and for people we haven’t met, and for people we may never meet.
We pray because we believe it works.
We pray because we have seen it work.
Last spring when my sister’s dear niece was knocking on death’s door – felled by a virus of unimaginable strength, we (along with countless others) prayed. And we witnessed nothing short of a miracle.
The day of my mastectomy, wracked with fear – terror actually – my cell phone rang as I was checking into the hospital. My brother-in-law, a Lutheran minister was on the phone at 6AM, ready to pray with me. As the tears rushed down my face I felt the calm envelop me.
Prayer is powerful.
But, it doesn’t always take worry away.
So tonight, as I struggle to sleep, I will think of them with gratitude. I will also think of the countless others – those we know and those we don’t, who are lifting my little girl up in prayer.
Tomorrow we go for the biopsy. Then we wait. I am not sure which part we will need your prayers for most. But, please – whatever you believe, remember us this week…
I woke up this morning earlier than normal, and that is not like me. Worry had taken its toll on me through the night. I was up and showered with plenty of time to get Meghan to Sunday School.
She woke up sore and stiff – some combination of a difficult swim class, and her body’s realization that it had been two days without Celebrex. That is her “wonder drug,” the one that keeps her moving pain free. She needs to be off of it until it is determined if she will need thyroid surgery. The pain will progress.
Still, determined, she struggled through getting dressed and found her smile before heading out the door. She looks forward to church – the lessons, the children, the teachers. She adores them all.
As I headed home to wait out her class I heard a song on the radio that I have heard many times before, but today Matthew West‘s “Strong Enough” spoke to my heart.
If you don’t know the song, its worth listening to, but some of the words that spoke to me; “I know I’m not strong enough to be everything that I am supposed to be. I give up. I’m not strong enough… Hands of mercy won’t you cover me, Lord right now I’m askign you to be Strong Enough for the both of us…”
Tears streaming down my face I headed home. I am always thankful and amazed when the song I “need” hits at exactly the right time.
As Felix and I headed back for the 11 AM service I reflected on the week in front of us. The biopsy looms large. The results even larger. Sandwiched in between is an appointment for my spleen. Busy week for the Ortegas and their ever troubled organs.
I had Emailed the pastors to let them know of Meghan’s biopsy. They have done such a wonderful job helping us feel at home, even as we are technically “guests,” that they have made it known to us they appreciate being kept “in the loop.”
This morning during Church I was introduced to a Moravian Custom. Appranetly early in the year everyone chooses a scripture verse from a large basket. They called it, jokingly,” Fortune Cookies, Moravian style.”
We were told that this passage would be our “watchword” for the year, and that we would would see God’s work in our lives through the scripture.
I said a quick prayer to God to send us something good.
As usual, He did not disappoint.
For Meghan – Hebrews 11:1 – “Now faith is the assurance of things hoped for, the conviction of things not seen.” For my Meghan, a verse to define the abstract “faith” that yielded lots of good discussion today.
For Felix, a verse from Job 37:5 “God thunders wondrously with His voice. He does great things we can not comprehend.” A reminder to the strength of our family, from Job who suffered so.
For me, Psalm 116:2 – “What shall I return to the Lord for all His bounty to me?” The reminder to continue to “Pay it Forward,” and to remember even on the tough days, I am so blessed.
The prayers of the church lifted up my little girl, and she sighed. So pleased to know the larger community sees her needs. She has such a long prayer list of her own, that to be remembered and prayed for clearly touched her soul.
I left church to a hug from the pastor, who is also a mom. As I looked into her eyes no words were needed, and meaning was clearly conveyed.
Despite our rough times… God is good to us.
I heard the Matthew West song again today. I didn’t cry this time. I just took a deep breath. “I don’t have to be Strong Enough….”
There are no coincidences. Only the hand of God through the power of the Holy Spirit, ready with exactly what we need, when we need it. Truly amazing.
I got a call this morning from Dr. S. The biopsy is scheduled for Tuesday at 12:45. Pleased to have it scheduled, quick math told me it would still be a week before we had a definitive answer. But at least I had the wisdom to shut my mouth and be grateful to have it scheduled.
My next question was about anesthesia. Had they decided to give it? In FNA (Fine Needle Aspiration) thyroid biopsies, anything more than a numbing lotion is uncommon. But Meghan had such TRAUMA from her FNA at another hospital in November of 2011. We had to push.
I had just told this child she could have cancer. I just told her she was likely looking at another surgery. She was unaffected. “I will have whatever surgery I need to. Just make sure I don’t have to be awake when they put those needles in my neck!”
This is the burn the cold spray that was supposed to numb her left on her neck in Nov. 2011.
All day I carry my phone everywhere. I literally put it down for 3 minutes and missed the call about the anesthesia. So the voicemail said, “We need Meghan at the hospital at 9AM tomorrow (Friday) to clear her for anesthesia.”
“When? What type? Why? I can get you a cardiologist report from December. I can be to my pediatrician in 30 minutes, and you just took blood on the 27th.”
I had pleaded for the anesthesia on her behalf. Now I would pay the price. Very careful not to take days off after my attendance debacle last year – I guess I will be at Sloan tomorrow, ensuring the anesthesia my kid asked for is in place. She doesn’t ask for much. Working hard on gratitude, I am relieved at least things are moving. Not on my schedule, but progress nonetheless.
So then my oncologists office called. They want me to see the surgeon. The surgeon we first talked about a month ago. The surgeon who had little more information than he had on December 7th after my MRI. The surgeon who insisted he needed the sonogram, but whose system at the hospital cannot upload it. No one thought to send me for another abdominal sono at their hospital – even though I asked. They would like me to see this surgeon at 10:30 Weds. They will have to have patience now. I have a kid to take care of first. If they were in such a rush I could have been healed by now.
So I am waiting still to hear from my car insurance carrier who somewhere in the midst of all this chaos decided I was totally responsible for the accident where I suffered a DIRECT HIT from a car who took no action to avoid me. Waiting to hear exactly who that letter of appeal gets addressed to.
All of these things that keep happening, keep me from seeing my Grandparents as often as I would like to. My heart weighs heavy. Time and stress are hard to manage.
Patience, I am convinced – is more than a virtue. It is down right necessary, and almost debilitating with exhaustion.
Patience for me is hearing, “It is likely your child has cancer,” and then WAITING to take care of it.
I get that in the scheme of things thyroid cancer grows slowly, and 2 weeks won’t make or break things. But this is my little girl we are talking about. May God bless me with the patience to get through the weekend.
Instead I spend days at a time looking at my phone.
Waiting for it to ring.
I think my new case has marks from the imprints of my hands.
I don’t know what I want… but I want to get out of “the waiting place.” I spend too much time here and its unhealthy.
An excerpt from one of my favorite Dr. Seuss books, “Oh the Places You’ll go!”
Thursday they said the biopsy should be scheduled by Friday or Monday. It’s Weds. at 7:30 PM. No worries. I have called. It didn’t help.
It’s a small nodule, the one they are concerned about. It is less than 2cm. But, excuse me for being anxious -even 10 year survival rates of about 95% serve as little consolation when the numbers refer to your little girl.
And what about my damned spleen? Clearly not a medical emergency, but the holidays messed with the waiting there too. I was told 9 days after they received the CD of my sonogram that it was blank. Really? 9 days? No word back from them about a plan either. I especially loved the part right before Christmas when my oncologist told me hamartomas are “almost always benign.” Great. See, prior to that conversation, I thought they were ALWAYS benign! UGH!
I am trying. And I will be fine. I guess some days I am allowed to be tired and grumpy like the rest of the world. As long as I remember…
Better get some loud music and another glass of wine. I think I need to dance the wait away!
Every year, this same week, I sit down with my calendar, and one for the following year. I carefully transfer all the important dates I need to remember. I write the birthdays, anniversaries, and other important “days to remember.” There is probably some much more high tech efficient way to do this on my iPhone, but this is a job I am not looking to simplify, or give up. I enjoy the time spent reflecting on the year that passed, and wondering what the next year will bring.
During the course of the year, around all the birthday and anniversary reminders, the basic events of life fill in the blanks. I can look back on some weeks, and months – where there doesn’t seem to be an empty box, and wonder how we got through. There are the basics, PT, swimming, dance class, music class. There are some parties, and celebrations. Around them are peppered annual exams, like the cardiologist and the eye doctor. There are some “sick” visits with the pediatrician in there too.
But last year was a “special” year. Between us there were three surgeries. Tonight as I reviewed the calendar I saw a higher than normal number of pre and post op visits. I saw consultation appointments with surgeons, and each month seemed to remind me of a surgery that was, well life changing in its own way. There were certainly a lot of firsts in 2012.
And, sadly there were some lasts too. I couldn’t bring myself not to write GGPa’s birthday on the calendar. It would have been in just a few weeks. Instead I wrote it with a heart around it. This year he will have his cake among the angels. Nor could I stop myself from remembering his and GGMa’s anniversary the same way. It didn’t feel right to leave it off. I am sure she will appreciate a call or an Email anyway.
GGPa, GGMa, Grandma, and Pop (left to right)
I remember lots of birthdays on my calendar. Some for the very young, and others for those quite senior folks I love so much. But, even as I ink those special days into 2013, I know there are no guarantees. I know that my writing their special date doesn’t ensure that we will all celebrate together. It is reality. It is sometimes tough to swallow, but we are not in control.
In Newton Connecticut many young lives were tragically altered. “Calendars” forever changed. No rhyme or reason. No notice. Gone way too soon.
I attended the wake of a colleague tonight. A 45 year old, happily married father of three. He died suddenly Christmas Day. I can not say we were “friends” outside of work, but I can tell you not a person that met this man easily forgot him. His every breath was consumed wither with song, or words of his love for his family. And tonight as I paid my respects I carried a heavy heart, and the reality again, that there are no guarantees.
Meghan was sick this morning. Sicker than I have seen her in quite some time. I was home alone, as Felix works this whole week before New Year‘s. As she lay screaming on the bathroom floor, begging me to make the pain stop, I was terrified. I called my sister to bring me Pedialyte and some essentials. We lay there for quite a long time, at points her eyes were rolling – reacting to the pain in her stomach. I held her as best I could and I prayed, hard. I needed guidance. I needed answers, and I needed that pain to be relieved. He heard me, as He always does. She vomited several times over the next hour or so, eventually ridding herself of whatever she had eaten that was bothering her. I hadn’t seen that agony since the days of the gall bladder attacks when she was three.
We had had plans today, to celebrate my grandparents 67th wedding anniversary with them. Even as the color came back into her cheeks, and the spring back into her step. we stayed home. The lunch date that was on the calendar – unattended. Our warm wishes sent with a phone call instead.
Grandma and Pop in December 1945
The calendar is a nice guide. A road map of sorts. It tells us where we hope to head. But, as every day reassures me – it, like life, offers no guarantees.
This week the phone will ring. Appointments will be set. A thyroid biopsy will be scheduled. A surgeon for my spleen may even get written in to the calendar as “consultation.” 2012 for us will end as it began.
Although as I tossed the calendar into the trash tonight, I couldn’t help but feel… somehow older, wiser, and even more appreciative of those who somehow come across my calendar each year.
The upside of waiting I guess, is that it gives me a bit of time. Since I can’t concentrate, I multitask. Simultaneously taking down the Christmas decorations, while doing laundry and eating chocolate chip cookies with white wine. Seems like a perfect time to stop and blog.
A few months back I posted about Meghan‘s necklace. The one that we had had created, just for her, inspired by the Global Genes Project logo of the denim jeans. She received it in August and was so thrilled. She wears it proudly and looks at it as a platform to explain to people what it stands for.
Her goal in having it created was to ultimately have the Global Genes Project sell them as a fund raiser. She has this hope that her idea will ultimately raise money for rare and genetic disorders. I think she is right, and eventually they will get to selling it. Although the holidays are a crazy time and a lot of major things have been going on at the Global Genes Project. They are a super organization. Working to the benefit of all of us who are affected by rare genetic disorders – in our case, Cowden’s Syndrome.
This fall she had my friend’s husband – who created the piece, engrave hers. It says “August 2012 – First of its kind.” How appropriate. I am quite sure my girl is the “first of her kind” as well.
Because, she decided she wanted me to have one too. A necklace like hers.
“After all Mom, you didn’t just have breast cancer. Cowden’s Syndrome is what we will both have – forever.”
She’s right. As I gulp the last of my wine. We are at this forever. Together. And as much as it flat out stinks, I wouldn’t want to share forever with anyone else. She is one awesome little girl. Each of us 1 in 200,000. Lucky enough to have each other.
I am getting a bit fatigued by all the positive stories I tell myself. All the ones where everything works out just fine, and we get a bit of a break from doctors and surgery and chaos and worry.
I think I am getting tired of them, because I am starting to doubt if they are true.
The waiting room in the pediatrics department.
We began the day at radiology at MSKCC in NYC. The thyroid sonogram took longer than it should have. I knew that. I also knew when the doctor of radiology asked to speak to me alone that the news wasn’t great.
The nodule they were concerned about in June still has them worried. Despite there being MANY other thyroid nodules, this is the one that is of concern. I have every reason to believe it is the same nodule that caused concern when we had the horrendous biopsy at the other hospital a year ago. The doctor told me right there it had to be biopsied. She didn’t even wait for us to see Dr. S. (See the appointments are set up so you go to radiology an hour and a half before you go to the doctor. Then the doctor usually reports on the findings.) I knew this was out of order, and it spoke to the seriousness of it all.
I explained that Meghan‘s biopsy last November was the most traumatizing experience of our medical lives together. We have been through a lot, but watching that radiologist YELL at her to be quiet, and then BURN her neck with the numbing spray… well it was too much for any of us. She will need to be sedated I said.
We went upstairs for our appointment with Dr. S. Before that Meghan met with one of the Child Life Specialists, and gave over 2 shopping bags full of toys. The woman was in awe, and I was just so proud.
We checked in for our visit with Dr. S. and we waited. While we waited I spoke. Candidly. I had to be the one to tell her they were looking for cancer. I had to tell her they were going to biopsy again. I had to tell her I was TRYING to get her sedation, but I couldn’t promise. She swallowed. She stared at me. She took it all in. Then she reminded me I should try REALLY hard for sedation with the biopsy.
We saw Dr. S. No new information, except that she grew a few inches and lost a few pounds since June. HE said she is OK right now, but he doesn’t want to see her lose any more. I chuckled at the school notices I always get home calling her obese. Dr. S. reexplained what I had heard in radiology. He reassured us that even if the nodule is malignant it is small, and not likely to need more than a thyroid removal. Some comfort… but not a ton, for my girl still growing. We were advised to take the first available biopsy appointment. And we will. I should know in a day or so when that will be.
Once we checked out it was on to the American Girl Store. WHAT A CROWD! Not being crowd people, either of us, we navigated the store and Meghan picked up some essentials – like a backpack and an allergy safe lunch for her new doll. The doll got her ears pierced, and we were out the door.
Daddy at work.
We headed up to see Daddy at work. We got a close look at the New Year’s Eve ball, and the view never gets old, no matter how many times we see it. Meghan LOVES seeing Daddy at work!
Family shot in front of the New Year’s Eve Ball.
45 minuted to get the car out of a midtown lot. We arrived home to 2 dogs that just weren’t able to wait until we got home. Upstairs floor cleaned. Two glasses of wine gone. Some type of leftovers for dinner. And tomorrow we get to wait by the phone again.
Good thing we are always ready for a fight!
Maybe in January the Ortegas should resolve to lose a thyroid and a spleen? One each? Really???
Tonight Cowden’s Syndrome, I will thank you for my gray hair, loss of appetite and generalized anxiety. Cut us a break… please?
beatingcowdens 