We are home.
The procedure is finished.
A scheduled 1 PM start turned into 2:45 on an empty belly.
But, it went fine.
The doctor got what she needed.
Now its up to the pathologist.
So, we wait.
We pray. (THANK YOU ALL…. WE FELT THE LOVE ALL DAY!)
I have a glass of wine (or two.)
We should have an answer no later than Friday.
Early to bed tonight.
Tomorrow I get to meet a surgeon about my spleen.
Cowden’s Syndrome is EXHAUSTING!
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.
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.
Then, we will wait.
I am patient – sometimes.
I am also wise – sometimes.
The trick really might be meshing the two.
That’s where I sometimes have some trouble.
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!”
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.”
“No, we have to see her here at 9Am.”
Patience and Wisdom.
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.
I am waiting.
Still.
I am tired.
I am angry.
I purposefully picked the best hospitals.
I searched out the best doctors.
My goal was to avoid useless waiting.
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.
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!
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 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.
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.
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!
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.
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?
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.
Keep Swimming…
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.
Keep Swimming…
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.
Keep Swimming…
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.
Keep Swimming….
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.
Keep Swimming…
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.
Keep Swimming…
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…
…Keep Swimming…
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 am trying – with a little help from my friends.
Well, it took my thyroid, or at least any functioning part, long before I knew why.
It took my boobs in the prophylactic mastectomy that wasn’t so much prophylactic.
Cowden’s Syndrome took my uterus. But I didn’t need it anyway.
It took my ovaries, but it gave me hot flashes in return. Fair trade?
Cowden’s Syndrome took my checkbook, and used it for copays, and parking lots.
It took my calendar – and filled it with all sorts of places I didn’t want to be.
Cowden’s Syndrome took away my peace of mind, and filled it with worry. (OK, MORE worry…)
It took my appetite. If you don’t count Cheerios, ice cream, and salad.
It took away all my comfortable clothes, and has forced me to replace them in smaller sizes that appropriately cover my fake boobs, without losing track of them in shirts that are too large.
BUT,
it gave me the means and the motivation for education and early detection.
It gave me the motivation to step forward and say, “I don’t need THESE any more.”
Because I have Cowden’s Syndrome I will not suffer at the hands of breast or uterine cancer, and I will do my damndest to make sure my little girl doesn’t either.
Cowden’s Syndrome gave me the courage to fire clueless doctors, and educate the ones who care.
I encountered an acquaintance with breast cancer today. She had on a beautiful wig, and is in the middle of chemotherapy. I felt guilty as she asked me how I was feeling. She knew of my ordeal last spring. Survivor’s guilt I think. It broke my heart to see her hurting, even though I feel she will be well again.
Cowden’s Syndrome SUCKS, in so many ways. But it is part of us now, and like anything that becomes part of you, I believe you have to yank the good out of it.
Cowden’s Syndrome has taken a lot from me, from us in this house. But the knowledge we have gained will give us second chances that some others may never have.
Cowden’s Syndrome took from my body – but in many ways it gave to my soul.
Perspective.
So my little girl took some of the influence of her Dad and has taken a liking to comic books. She has been reading them on her Ipad, and although I might not admit it to either one of them, I kind of like the idea. I like Superheroes, and their “Good beats evil” message. I know it doesn’t always work out that way, but she is 9…
I sat in the MRI room with Meghan tonight – again. And even though it is a wonder I could think of anything over the banging of the machine, and the remnants of this migraine I have been fighting for days, I kept thinking of bookends.
Yep, bookends. See, back in June, on the first day after school was out for the summer we went for an MRI of her knee. It was a Thursday, the Thursday before July 4th. So, how ironic I thought, when earlier I was sitting in another MRI, this one of her brain, on the Thursday before Labor Day.
Bookends. Our summer ends the way it began, waiting for test results. Although I am starting to get the feeling that this testing and waiting will transcend all seasons. I will just notice it more in the summer – the season where I have one full time job (Mom to Meghan,) rather than two (Mom to Meghan AND teacher.)
And I am reminded of the image of the dog digging up the street that Meghan found for me a few weeks ago. This is what we do.
We do not accept anything less than an answer that makes Mommy comfortable. When the doctors tell me that puberty is just starting earlier these days, I buy it – to a point. When they tell me to consider all the hormones in the milk, and the chicken, I raise an eyebrow. My girl who has been dairy free since she was 15 months old, and has almost never consumed a piece of nonorganic chicken, who is at or below the weight for her height, and who has a mom who went through puberty LATE, should be one of the early ones… I just don’t buy it. So when the hormone tests don’t match, and I get doctors refusing to answer me, I push harder. That is what the MRI was today. My fault. I needed to have them rule out a pituitary tumor. We have Cowden’s Syndrome. We grow things. Someone should check. Just sayin… Then, when the results are clean in a few days I will breathe deeply and accept that this just IS.
And the recurrent strep… well lo and behold, the ENT said there is regrowth of the tonsil tissue. He wants to see her the next time she has strep. He shouldn’t have to wait too long. He also told me the right lobe of her thyroid was quite enlarged.
So we wait for the thyroid panel, and wonder if it has changed drastically. And, we think of those nodules on her thyroid and the doctor who told me they will turn… not if – but when.
Bookends.
We started the summer at the doctor. We spent most of the summer at the doctor. Scan this, check that. It will never happen like this again if I can control it, but it was necessary this time.
And in between the bookends of MRIs, we fit in some fun stuff. There were some great play dates. a day trip to the beach, some swims in the pool. a FABULOUS trip to Disney, a week of Vacation Bible School – (although not our “favorite”one.) There were some lazy days, and lots of just being together time. We can get a lot of talking in on all those trips to the doctor.
I guess the summer wasn’t a total loss, and yet still somehow I feel sad. Cheated. I stress at the thought of the scheduling complications being back at work brings. Holding up the appointments of a regular kid (eyes, orthodontist, swim class, PT, dance…) is tough enough. Complicate it with Cowden’s x2 and it gets hairy.
Maybe I feel like this every summer. Maybe I just love my girl too much. Time marches on. School next week ready or not!
I am sitting on the couch, alone. Unable to sleep because of the pain in my knee.
My left knee and I have quite a history. Pretty much told it was “arthritis” as a young one, but that was never confirmed with lab work. A car accident in 1991 banged it up and started the swelling on and off. Arthroscopic surgery in 2000 to “clean” it out, gave me relief for a few years. Now it, along with the horrendous varicose veins that plague my legs, are temporarily at the bottom of the triage list.
There are other things that we need to do first. Plus, we can’t spend our WHOLE life at the doctor.
So, when I am in my worst pain. The kind that causes me to actually ice and elevate the leg, and I start to feel sorry for myself I look at my daughter’s face and find my perspective.
I will be 40 in a little over a year. My joints have had some time to wear and tear. She will be 9 in a week. She can’t run or ride a bike without pain in her knee. She deals with a mass almost 3cm x 1cm intertwined in the side of her knee.It is always there. Even on the “good days.” She lives with he reality of the AVM that will continue to exist- to grow, and then be worked on, likely to only grow again.
As I climb the ladder closer to “middle age” thinking in terms of pain and management for the “rest of my life” is less scary. Then there is my girl.
Soon to be 9 years old. Gluten, dairy, soy allergies. Pancreatic insufficiency,chronic herpes simplex infection, immune system deficiency, early puberty, Cowden’s syndrome, gall bladder removed, tonsils and adenoids removed (and now growing back), lipoma removed from her back, excess gum tissue removed from her mouth, precancerous thyroid nodules, and an AVM that even after 4 surgeries just won’t quit.
Yet she finds plenty of time to laugh and smile every single day, and precious little time is wasted complaining about anything – from the one who could complain all day.
Life isn’t fair, but I am going to sit here with my ice pack and reflect on the fact that God is good – all the time. And He gave me one heck of a sweet gift in my little girl.
beatingcowdens 