Now we’re back where we started…

Published on May 15, 2015May 15, 2015 by beatingcowdens1 Comment

“Do It Again” (The Kinks)

“Standing in the middle of nowhere,
Wondering how to begin.
Lost between tomorrow and yesterday,
Between now and then.And now we’re back where we started,
Here we go round again.
Day after day I get up and I say
I better do it again…”

The chorus to the old song rings through my head, as we prepare to return to work and school. Eight days post-op and everything checked out just fine at the surgeon. It’s ok to return to school, as long as she limits stairs, reduces the weight she carries, and generally takes it easy. The surgery went well. The recovery is moving along. But, as with each time we’ve done this, there are no promises. There are some cautious words. There are some hopeful words. This is what I have to focus on. And I will.

But, sometimes it can be hard.

Like when you do research and turn up this page from an orthopedic clinic. (Rosenberg Cooley Metcalf) and you do OK until you get to the bottom where it says “Recovery.”

Knee

Primary Inflammatory (Synovial) Disease of the Knee

Diagnosis

Your diagnosis is a primary inflammatory condition involving the lining (synovial tissue) of your knee joint.

Injury or Condition

This condition represents a primary inflammatory disease developing within the velvety lining (synovium) of the knee. In response to inflammation, the lining tissue can thicken and hypertrophy dramatically which may lead to chronic swelling.

Cause

The cause is often unknown. Some inflammatory diseases of the knee lining involve only the knee joint (PVNS). Other diseases like Rheumatoid Arthritis can affect multiple joints.

Symptoms

Typical symptoms are moderate to severe generalized swelling and pain about the knee. Marked swelling can be associated with stiffness usually in bending the knee. Increased warmth is felt about the knee in some cases.

Treatment

Standard treatment includes:

Anti-inflammatory medication for six months.
Safe exercises to improve strength without aggravating swelling.
Ice, warm packs and knee balms can be used to decrease pain.
Swelling can sometimes be reduced by application of elastic stockings and/or sleeves around the knee.
Diagnostically, joint swelling aspiration and MRI can provide information, although it may not change the treatment.
If non-surgical treatment fails, arthroscopic surgery to remove the diseased tissue (synovectomy) should be performed to limit or cure the disease.

Precautions

Important precautions:

Do not aggravate swelling and warmth about your knee. Increased warmth and swelling may weaken your thigh muscles and may raise the risk of destructive changes within your knee.
Do not ignore or neglect your condition. Follow recommendations and do not miss important follow-up visits.
When arthroscopic synovectomy is necessary, elevate your limb very well for 48 hours and initiate full weight-bearing within the first 3 days of surgery.
Avoid stress.

Recovery

As the cause is unknown in many cases, the recovery can be uncertain. Two-thirds of cases generally recover completely. Full recovery after arthroscopic surgery usually takes 3-6 months.

“Two – thirds of cases generally recover completely.” The math teacher in me is unhappy with those numbers. The mother, the mother of this child, knows that she defies statistics whether they are for or against her. She is her own special case.

Meghan spent the week on the couch, making up what seemed to be an astronomical amount of schoolwork. Maybe it was a good distraction. After surgery 13, the novelty of the whole thing has worn off. Days are long. Recovery is mundane. People are busy. Texting helps a bit, but the hours drag.

We got to PT this week, twice. And already I see progress. That’s why quality therapy is worth every minute.

So during my days home I did laundry, and caught up on some household things while I stayed close to my girl. I also attacked “the pile.”

There is a spot on my desk where all the bills, letters, invitations, flyers, and pretty much everything else goes. I try to get to it every few days. But mostly I don’t. Then it overwhelms the table. And somewhere under the pile is “the list.” The upcoming appointments line the top. Then there are the appointments I need to make, and the bills to be addressed that for some reason are not in “the pile.” Today was a good day to tackle it. I made some significant progress.

I also spent hours on the phone. I dredged up the anesthesia bill from my surgery in February. That took an hour. But, it’s done for now.

I started scheduling appointments. We tend to cluster a lot the first two weeks of the summer. Some have been planned for months. Some I’ve been blocking. I got a few more in. Then I got stuck.

In the hospital the pediatrician last week was really on my case. She wanted to know who was “in charge” of Meghan’s appointments, check ups and surveillance. She didn’t like that I said, “ME!” (Maybe it was the way I said it… (grin)) But, truth be told, I really don’t like it either.

I had to tell the endocrinologist that 12 weeks was too long to wait to repeat ANOTHER irregular lab finding last week.

Meghan’s blood pressure in the hospital was low. Like at times crazy, scary low. I know she was just cleared by a cardiologist, but…

And the lesion on her hand dubbed “vascular” by the dermatologist…. What to do with that? The same dermatologist who promised the moon and the stars and the sky in November as I prepared HOURS worth of Meghan’s medical records for her. The same doctor who said she’d help us. That one. Yep, she’s useless at this point too.

I was on the phone today pleading with the receptionist of one of my doctors to let Meghan come in as well. Apparently the fact that she’s “adult size,” doesn’t matter. I was left so frustrated I choked on a few tears.

This Syndrome is big. I can manage it. I can and I will, because there is no other choice. But, I need some help. I need a point person. Someone to force the doctors to listen. Someone to gather it all into one place and make sure it makes sense. Someone to make sure we don’t miss anything.

In desperation I emailed the genetecist who diagnosed us. He responded within an hour.

Dear Mrs. Ortega,

I am sorry I said no need to return. I have been overwhelmed with patients but this is no excuse. I will find out the referrals needed for Meghan and we will together make a surveillance plan. And we will meet so we will document the whole process.

I feel that I am the least helpful of all the physicians because I do not provide treatments. However, I will gladly assume the role of coordinator of care for you and Meghan.

Sincerely,

(The angel I need… I hope)

I will call tomorrow to make an appointment. I have a good feeling about this one. Please, whatever your faith, send some prayers. This would be huge. Really huge, in a life-changing good way. We are three years in and due for an overwhelming cycle of tests again I’m sure – but I know it gets easier.

I just want to keep her safe. I want to use every tool God has given me to keep her as safe as I possibly can, so we remain BEATINGCOWDENS together.

“…Where are all the people going?
Round and round till we reach the end.
One day leading to another,
Get up, go out, do it again.

Then it’s back where you started,
Here we go round again.
Back where you started,
Come on do it again…”

Thyroid PREvivor!

Published on February 21, 2014 by beatingcowdens8 Comments

The phone rang at about 7 PM. It’s Friday night. I did not expect the call to be from the nurse practitioner at the endocrinology office that manages Meghan’s care.

Wednesday we went in for a surgical follow up appointment. The incision is healing nicely. She is still sore but cleared to return to school Monday… and swimming too. While were there, they asked for some lab tests to be rerun.

Calcium levels which were botched Friday before discharge needed to be looked at again. And the parathyroid hormone to make sure it was still functional.

Before we left the facility, we received word that the calcium levels were actually high. No need for me to even start ranting again.

We were advised to keep her on the current supplementation level for 4 weeks, then wean her off and revisit the surgeon in 8 weeks. We would also see the endocrinologist at that time. Although, endocrinology would be ordering lots of labs in the mean time. All of this I understand.

Except, when the nurse told me she was calling, at 7 on Friday night (when the results from Weds. labs were in the system on Weds) to tell me to keep Meghan on her baseline calcium (the Isagneix Calcium she has taken for almost a year) and lower the supplemental pills they gave from three to two.

Seems logical. EXCEPT when we were discharged in that debacle Friday night they altered the script from 3 to 2 already. So so we go down to one?

The nurse stuttered, confused. I still don’t think anyone understands what a mess they made out of her care on Friday. No, she said. We will rerun the calcium in a week. Anyone want to wager that it will be too high?

As she went to hang up I asked about the pathology I had been waiting on pins and needles for. Almost as an afterthought, she said she didn’t think it was in. Then, “Oh, it’s right here… want me to send it to you?”

Um, YES.

“Everything seems ok, do you have a fax?”

YES!

And that was the end of the conversation. Left to read the pathology report on my own I pored over it as best I could. Confused that it was date stamped 6PM on Weds…. and I found out it was in by accident. But, whatever…

So without the aid of a doctor, and with my somewhat well developed medical vocabulary, everything looks to be

BENIGN!!!!

There are things about it I don’t like, of course. Like that some of the “lumps” are referred to as nodules, while the three problematic ones are called “tumors.” The largest of these tumors measured 2.4 x 1.3 x 1.3 cm, and the others were not that small either. No wonder this kid was choking! There is “hyperplasia” all over the place too. But it seems like the bottom line is, we got in in time.

Cowden’s we BEAT YOU to it!

Of course there is no crystal ball. There is no way to say for sure that it WOULD HAVE become cancerous, although I think we all know the reality. There is no way to know if it could have stayed in a little longer, but I like to think eliminating the anxiety over the constant FNAs, which incidentally had caused quite a mess of scar tissue according to the surgeon (THANK YOU COWDENS!) will be the better choice in the end.

It is ~~easy~~ easier, to make decisions about prophylactic organ removal when it is your own body. You just do what you have to do and move on. But my husband and I had to make the conscious decision to remove something from our child’s body. Can she live without it? Absolutely. But just because you CAN live without something doesn’t always mean you should, and it doesn’t mean that removing it is without consequence or effect.

As a new mastectomy patient I read lots of stories of brave young women who had decided not to spend their lives waiting for cancer to get them. They had taken steps, usually to get ahead of BRCA1 or BRCA2. I immediately admired each of them. They somewhere along the line coined the term “PREVIVOR.”

https://www.facingourrisk.org/FORCE_community/previvors.php

Primarily used to deal with the risk of hereditary breast and ovarian cancer, I think the term has a broader reach. My girl does not need to be a thyroid cancer survivor. She is a PREVIVOR. She got there first.

For this I am thankful.

BEATINGCOWDENS!

This card was created out of her need to "teach" others about Cowden's Syndrome. — This card was created out of her need to “teach” others about Cowden’s Syndrome.

Christmas Letter 2012, and some unexpected happenings

Published on November 27, 2012November 27, 2012 by beatingcowdens3 Comments

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

December 2012,

Dear Friends,

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 4^th 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 27^th 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 67^th 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

*****************************************************************************************************

See, and just when I thought it was safe…

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….

Anyone else looking forward to 2013?

Cloudy With a Chance of… Puberty?

Published on May 30, 2012May 30, 2012 by beatingcowdens1 Comment

So, last night after we left the endocrinologist‘s office, I couldn’t shake this book. “Cloudy With a Chance of Meatballs.” If you are not familiar with the story, basically in the town of Chewandswallow they get their meals from the sky. They never quite know what’s coming, but three times a day it rains things like juice… or meatballs. Eventually this starts to become a problem for them, as the portions get larger and more unpredictable. It is a cute story, worth a read if you have a little one. But nothing I want to model my LIFE after!

This was the long awaited appointment for my 8 year old. The one who has been showing all the signs of precocious puberty. She has grown 5 inches in the last several months, lost almost all her baby teeth, grown 2 shoe sizes and now at 8 yrs, 9 months, stands 4 foot 9. This is the appointment where we were going to get the results from the testing, and she was supposed to tell me that the blood in fact confirmed the early start of puberty. Then we would go home, and start having chats, and we would make it through.

Except, as I have said before, things don’t often go according to plan. So, regarding the extensive lab work up, she said, “Your daughter is NOT in puberty. All the hormones that tell the brain to trigger development are sleeping.”

Excuse me?

How then do you explain the breasts that are developing, the palpable painful lump, and this giant growth spurt that you called “typical of puberty?” AND What about the breast sonogram?

Well that is normal. It says “Tanner Stage II development.”

But doesn’t that mean puberty?, I asked.

Well, yes.

But you said… (As I reach for a copy of the report) Hey, it also says “area of palpable abnormality of clinical concern… compatible with Tanner Stage II development!” So, should we be concerned? (Getting slightly more alarmed and annoyed)

No, she says. Look here at the pelvic report. It says the uterus is not in puberty, but the ovaries are enlarged, and consistent with early hormone stimulation.

Stimulation from what? Because now I am confused. Is this puberty or not?

So, I kid you not, she draws me a picture. A crude picture of two breasts, a uterus and two ovaries. She puts a small dot on one of the ovaries and Xs it off. She says that at some point she “probably” had a cyst on her ovary that caused her body to think it was in puberty and it began developing. But don’t worry, it stopped because the hormones in the brain are not awake.

WHAT? Has anyone told her body?

I don’t need to see you again, unless you have a problem…as she pushes me out the door.

What about the sonogram that suggests clinical follow up?

UM, HOUSTON…. we DO have a problem!

I swear I almost asked for my CoPay back on the way out.

Is there anyone who gets that Cowden’s Syndrome is a RARE disorder characterized by a mutation on the TUMOR SUPPRESSOR gene? If the body and the labs don’t agree, I think we probably have to look further. Just in case there is a tumor somewhere that didn’t “fall off.”

Everything about this, from the difficulty of scheduling it at a major NYC hospital, to the way the report was written in the double speak of maybe its normal, maybe not, to the contradictory interpretation by the doctor from what she sees on the body and the paper, makes no sense to me.

I have nothing against weather reporters. But they are wrong a lot. Their life is of guesses and predictions. I guess I hoped for more from the doctor than Cloudy, With a Chance of… Puberty!

I will get my umbrella, my Mommy mouth, and all my questions. I will keep asking until we get some answers. But really, why must it always be such a battle?