Spleen – Page 2 – beatingcowdens

Happy 2nd “Boob Day!”

Published on March 4, 2014March 4, 2014 by beatingcowdens1 Comment

My math mind is full of numbers. It is full of lots of things actually, and sometimes I wish I could get a few of them out… quite a few.

I am pretty good – although not perfect- with dates.

Today marks three months since my father died. Flying free with the angels I am sure, yet I miss him. A lot. A blink of an eye, and an eternity.

Tomorrow is my nephew’s birthday. He will be 6.

I remember his 4th birthday quite clearly, although I didn’t see him that day either.

On March 5th in 2012 I had the “prophylactic” bilateral mastectomy. The one that ended up being stage 1 DCIS. Quite the surprise party.

And while I don’t even miss my old boobs, the new ones get scrutinized a lot more than the old ones. Well meaning surgeons, they say things like “that kind of volume falling away is normal,” or “we can even that out whenever you want.” The thought of someone coming near me again with a scalpel right now makes me ill. They will have their chance – years from now when these girls have to be replaced. Maybe then I will have time to care more.

The last 2 years have been a whirlwind. Well…maybe even before that. The scope of the changes in our lives in recent years require more than I can muster in a 10 PM post. But, being a numbers person…

Between Meghan and I we have had 5 surgeries in the last 2 years. She has me beat 3 to 2. But, I have lost more body parts. I am down 2 breasts, a uterus and 2 ovaries. She lost her thyroid, and a vascular cyst in her hand.

I am still crossing my fingers about my spleen. That one’s up for MRI in April. Hoping the 4 tumors there are behaving.

There comes a point where you have to laugh I guess. People think “Oh no! A mastectomy!!”

I think – “Whatever it takes…” But then again I had a pretty good teacher. (XO MOM)

I guess it’s all about perspective.

Meghan is really into identity, and figuring out where she belongs. This week I bought her a “Previvor” T shirt. She was thrilled to wear it to school today. She takes the opportunity to explain genetic cancer risks whenever she can. While I am happy she is confident I shudder at reality.

This is only stage 1 in her life as a previvor, staying one step ahead of genetic cancer risks looming large. This is only the beginning.

We run from doctor to doctor. We alternate surgeries. We try to laugh in between as we deal with the rest of life. Time is very difficult to balance. The constant running to doctors and the anxiety of waiting for them to find “something” can literally make you insane.

If you let them.

And I think that’s probably the key. And the message.

I am overwhelmed this week. Really fried. Having a tough time keeping it all together.

Then I think…

I was ahead of thyroid cancer 20 years ago before I knew the depth of the risk.

I am 2 years beyond the threat of breast cancer.

My girl is weeks past the looming thyroid cancer that threatened her.

Two years. New boobs. No sagging on this 40 something gal.

Plus I am a HELL of a lot better off than I was two years ago at this time!

Ash Wednesday. Never raised to “give up” for Lent. Rather to use it as a time for focus.

Time to get out of this funk. Forget November. Time to be thankful is right now.

And today I am thankful for this little girl whose diagnosis saved my life.

My body may be 40, but my boobs are only 2!

Thankful to God and this little chick!

This kid is clearly a "FORCE" to be reckoned with! — This kid is clearly a “FORCE” to be reckoned with!

My Wish

Published on July 18, 2013 by beatingcowdens5 Comments

I have been quiet this week. That in and of itself is unlike me.

I am tired – well bordering on downright wiped out.

There are a few more weeks of summer to go, and aside from a well planned Disney Trip, set in place in January – there seems to be precious little to look forward to.

Meghan has a short list of “have tos” which I plan to do EVERYTHING in my power to work out for her, but really every effort I made to keep this summer better – to “streamline the doctor visits” seems to have failed miserably.

Today she began her summer homework. While it is reasonable, it is one more thing on a list of “have-tos” for a kid that just wants to be a kid.

There is no camp for Meghan. It is all doctors appointments – all the time. And when it is not her appointments it seems to be mine. She is swimming three nights a week on a new team, at least she is LOVING that – but we have barely been inside our previously overused pool.

And its funny, while she and I have both had appointments of almost equal number in the last few weeks, I feel so much less stress about mine.

The geneticist the endocrine surgeon, the gyn oncologist, the abdominal MRI, the plastic surgeon, and the oncologist. The spleen survived its next cut – and can live for another 9 months. The 3.5 cm roundish lymphangiomas are stable. That’s all we ask for now. The thyroid lymph nodes – not suspicious enough to biopsy.

The plastic surgeon, well the LOVELY woman offered me a boob job to correct the “asymmetry” caused by me shoving the reconstruction all into one day. Not this year, but thanks. Good to know the offer stands indefinitely. For now, I have other things to do.

So I have only one more of my appointments lingering, a late July follow up with the breast surgeon. I thought of blowing it off and then realized how dumb that would be – for so many reasons. So, I will go.

But Meghan’s appointments, those are the ones that keep me up at night. Those are the ones that strike fear and anxiety in the core of my soul. My heart beats outside my body in this little girl. I can not sum up in any number of words the depth of my love for her.

So to say this summer, and especially this week has been sheer hell would be the understatement of the century.

Her appointments began the day after school ended. The lengthy thyroid sonogram bought us another 6 months. The pituitary function test was a train wreck, but the call this week claims the results were OK. I want to feel more relieved. But its hard. I am waiting to read the report myself. “Doubting Thomas?” Maybe. Realist – probably. Something is not quite right, but at least its not SO wrong it has to be addressed today.

The geneticist began to speak of carnitine issues, and I am waiting to hear of a possible muscle biopsy. In the interim I bought carnitine. Lets see if we can cut that one off.

The vascular surgeon examined the wrist, painful since early June, and the knee. He wants an orthopedist on board, but wanted me to consult with the rheumatologist about the wrist, and then scan the knee that had the 4 surgeries, because its been over a year. The rheumatologist concurred on the MRI studies, so we went forward with the wrist first.

Saturday, as I wrote about previously was hell on earth. I have been through a lot of MRIs with this kid, and the behavior of the two techs scared me to my core. I was assured upon exit, that the results would be available to my doctor Monday that passed. Well multiple calls, over the course of Monday and Tuesday led to a promise the results were being released Tuesday. “It’s a complicated read Mrs. Ortega.”

Wednesday morning – still nothing at the vascular surgeon’s office, only to find the CD and report left by courier at 10 am. They will make it by 3 I was told.

A return call to the surgeon’s office at 4:15. “They just got here, but the doctor is gone – emergencies. He should be able to look at them tomorrow.”

Some time around 4 AM my daughter climbed into bed between my husband and I. She had been awake long enough to finish her book, but she just couldn’t settle over the pain in her wrist. At about 6:15 this morning she nodded off. I tried desperately to find my peace.

And all day today, again, I held my phone. We skipped the pool in between the “have tos” of getting the oil burner cleaned and our annual trip to the dentist (normal stuff.) I refused to be far from my phone. But as minutes became hours, my hope dwindled.

A call to the office at 4:30, “Sorry, he never made it in today, but Meghan’s chart is on top of his desk. He has office hours tomorrow.”

Six days.

Unnecessary torture.

Six days.

Wondering, worrying.

Even if the report – by some freak of nature reads “normal” I can’t even be pleased, because the pain is not normal. It is real, and it is consistent, and it has gone on too long.

I wish for a lot of things in the world.

I wish for children and their parents not to suffer with illnesses or adversity of any kind.

I wish for relief for those in physical, mental, and emotional anguish.

I wish for peace in the hearts and minds of the caretakers of those who struggle.

But today I also wish something else.

I wish that EVERY SINGLE medical professional who performs a test – from what is perceived as insignificant, to critical recognizes the power of their words, and their actions. I wish that EACH of them understand what it is like to be on the receiving end of cryptic messages, grossly extended tests, and precious little reassurance. I wish that EVERY doctor who receives a call from a patient panicked about their results be PROMPT in their response. I wish that EVERY one of them, who goes to work each day and forgets that our child, parent, sibling, loved one exists will at some point in their life be on the waiting side.

I WISH for every one of them – from the techs, to the couriers, to the office staff, to the doctors- to have the opportunity to await the results of a test from someone they love dearly.

Then MAYBE, just MAYBE they will understand our torture.

Hang on Meghan. Summer is coming. Hang on.

Moving at our OWN pace

Published on July 10, 2013 by beatingcowdensLeave a comment

Two weeks ago today we left for the last day of school. Seems like an eternity, although not a restful one.

Today was the first day I woke up with nowhere to be, and nothing to do. Our first mandatory stop is swim practice at 5:30 PM. So I sit, nursing a cup of green tea, and trying to convince myself, on my health quest, that it is just as good as the caffeinated hot cocoa I have been drinking for years.

This morning I woke when my body told me it was time – somewhere around 8:15. What a blessing to open your eyes because you are ready.

I tended to the garden. I watered my tomatoes, peppers, eggplant, cucumbers, and I even picked a ripe zucchini. I watered the flowers on my deck and I marveled at the calm beauty of the neighborhood at 8:15 on a Wednesday morning.

Not my plant - but you get the idea! — Not my plant – but you get the idea!

Now, to all you teacher critics out there- I recognize ten weeks of unscheduled time is a gift. I understand its not “the norm,” and I AM grateful. But to all you who are realists, I try not to be much of a complainer, but this schedule we are keeping is far from a walk in the park.

Even as I reflect just on yesterday, and then the last week, I can easily find myself overwhelmed.

The rhuematologist confirmed that the Celebrex is necessary. On the up side she said, at least the liver seems to be handling it well. Yep, on the up side I need to worry about my almost 10 year-old’s liver? So we have about a 50/50 split, and that’s just the doctors we like – touting the pros and cons of Celebrex. Take her off. Leave her on.

I love them all, but ultimately the pain decides for us. This child is accustomed to pain so deep that the 20 laps of butterfly she swam Monday – when I expected her to be barely able to lift her arms Tuesday – caused her to need only “an extra stretch.” But the pain in her wrist right now – that can knock her to her knees. Celebrex it is.

So I read articles from the oncologist last week about “angiogenesis” http://childrenshospital.org/newsroom/Site1339/mainpageS1339P356.html

I try to absorb medical jargon about why the Celebrex helps the pain – but doesn’t cure it. And why it may even help prevent the Arteriovenous Malformations (AVM) from flourishing.

I read an article she gave me on “prophylactic thyroidectomy” and its benefits in Cowden’s Syndrome patients.

I read about “Long Chain Fatty Acid deficiency” and heard about the possible need for a muscle biopsy to assess carnitine levels.

I am an educated woman, but I sometimes wonder why I seem to spend more time in medical journals than educational ones. Did I miss my calling somewhere along the line? Probably not, but “necessity is the mother of invention.”

And yesterday as she was examined by the rheumatologist there came the confirmation that the right wrist is “thicker” than the left. A month and 3 days after what we thought was the “injury” to the wrist, it isn’t better. Not really at all. So she said, definitely get an MRI.

We are on it. 11AM Saturday. We already cancelled the birthday party we were going to.

She wants a copy of the report – ASAP. She expects they will find something. I went to make my six month appointment, and she told me to hold off until after the test results.

I look at the piles on my desk. Better since the shredding is over. I glance at the order confirmation for my new driver’s license, and can’t help but wonder where the old one ended up. I look at a beautiful collage Meghan sent to the printer last night as I was working – just to make me smile. I look at the books for the “Teacher Effectiveness Training” I will be attending tomorrow, and the flyer with the itinerary for the Disney trip. Its right alongside the Costco list, and the original copy of the Myriad genetics report that I don’t have BRCA 1 or2. Obviously I still have a little more work to do down here.

Monday I went for my MRI. The one that checks my spleen. Next Tuesday I have the appointment to find out if I can keep it. Already covered the endocrine surgeon, the gyn oncologist, the I just need the breast surgeon and the plastic surgeon, and my oncologist to have their visits. It’s easy to forget that I am even part of this Cowden’s Syndrome mess.

My focus is on the beautiful one with the curly hair, who gives the best hugs in the world. It will be a long week – again. So for today, I will try to slow it down. The sun is shining. It’s July. And we don’t have to go to work OR the doctor today!

“The Six Month Leash”

Published on January 13, 2013 by beatingcowdens6 Comments

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.

Who knows, I might just get back in shape yet!

One step at a time

Published on January 9, 2013 by beatingcowdens14 Comments

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.

That is definitely in the “Post Cowden’s Syndrome” world.

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.

No place like home

Published on January 8, 2013January 8, 2013 by beatingcowdensLeave a comment

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!

Patience and Wisdom

Published on January 3, 2013January 4, 2013 by beatingcowdens2 Comments

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!”

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.”

“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.

And give me WISDOM with that PATIENCE too please?

Waiting…

Published on January 2, 2013January 2, 2013 by beatingcowdens3 Comments

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.

An excerpt from one of my favorite Dr. Seuss books, "Oh the Places You'll go!" — 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!

What a Day!

Published on December 27, 2012December 27, 2012 by beatingcowdens2 Comments

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.

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. — 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?

Perspective… with a touch of fatigue and frustration

Published on December 20, 2012December 20, 2012 by beatingcowdens2 Comments

I have said so many times, and through the last year especially, that it’s all about perspective. That is how I get by, and that is how I teach my daughter. The key is having enough perspective in life to understand that in EVERY house, in EVERY street, in EVERY city, in EVERY country, people have “stuff.”

Now its easy to look sometimes and think that “this isn’t fair” or “they have it easy,” but in reality – we just don’t know. We aren’t them. So we live our lives, trying to avoid passing any judgements – and doing our best to get by.

We are acutely aware, especially in these days after the tragedy at Sandy Hook Elementary School, and “SuperStorm Sandy” that tore through our hometown, of how lucky we are,

And yet, even with all that perspective. Sometimes it’s just hard. Sometimes its hard to get up and get going, and press on. Sometimes its hard to deal with the punches life keeps throwing. Sometimes I need to stop and take a breath to avoid the chest pain of my own anxiety. Sometimes that’s just how it is.

So, I remain torn. Torn between the conscious knowledge that so many others are suffering in ways far worse than I could imagine, and this ever-present, sometimes bone crushing fatigue that plagues me as we just try to get by.

If you are still reading then. you will indulge me a few minutes of frustration along the “Cowden’s Syndrome” journey? That is, after all, what brought me here to being with.

Sometimes when life gets as overwhelming as it has been I start to practice avoidance. I duck phone calls and messages. Not because I don’t want people. It’s actually quite the opposite. Its because I fear people will tire of hearing the same old thing. And, really, no one knows what to say. So even if I am comfortable enough to lay it out there, I feel bad for the poor soul now left without a clue as to how to reply.

Three months ago Meghan‘s pediatrician asked me to find her a neurologist to contend with her headaches I am thinking she more likely needs an ENT for her sinuses, but I haven’t found either one. The week of “Sandy” her eye doctor appointment was cancelled. Haven’t rescheduled that one either. Tonight she lays in bed resting her fatigued hypermobile joints. I wonder if she gets that most kids don’t have to spend the night in pain just because they danced in school a bit today.

Last December – this exact week, I was very busy getting the slides from Meghan’s November thyroid biopsy transferred to a prominent cancer hospital for a second look. It took phone call after phone call, but finally they were received by the endocrinologist/oncologist. Just in time for a holiday break. We waited anxiously for confirmation that the biopsy was read correctly and was indeed benign. We were called in for a meeting with the doctor a few days after New Years. The news was better than we had expected. “Precancerous cells.” Come back in 6 months. And so we did. The scan in June got us the same – return in six months. On December 27th we will head back to see if those cells are still “precancerous.” I am fairly sure I am the only one who remembers the timing of last year’s anxiety. That is why I find this year’s timing ironic as well.

So, the car is totaled and gone a few weeks now. The back is improving – often, but not always. The sonogram revealed disconcerting growth with the spleen hamartomas. I trudged through another MRI. I was told to call a surgeon. They requested the CD from the local sonogram. I sent it Fed Ex. It arrived last Thursday.. I called Thursday last week to confirm its arrival. Then I called Tuesday to find out what was the progress. I was told the oncologist and the surgeon had to view it then talk. I think I annoyed the receptionist when I asked if it would be after Christmas. She said no. It would be sooner. So, I have carried my phone like a schoolgirl with a crush. Nope. Tomorrow is Friday. I can almost wager they are away, or on vacation. I just want to know if I am planning for surgery on my spleen. That’s all. Am I planning for surgery? I can wait on the specifics.

But,maybe I can’t wait that long. I guess that all depends on Meghan’s thyroid. If that stays in, then I can pull this off. One more surgery – no big deal. But if she needs surgery too… then things get trickier.

I am NOT looking for a formal plan here. I know how God feels about that. Just some guidance… maybe?

I was back at the hospital that did my hysterectomy tonight for my six month follow-up. Everything looks good. Apparently the hot flashes are right on schedule, and hormonal migranes get me a script for medication. I will see them again in the summer so we can talk about adding bone density test to my list of life long follow-up stuff. It’s all good. I got this.

I think.

Yesterday was “cause day” at our school. I wore Meghan’s necklace and her shirt. I was able to raise a bit of awareness. We have 300 yards of denim ribbon. We are going to do something special for rare disease day in February.