When you reach the end of your rope…

Published on June 3, 2018June 3, 2018 by beatingcowdens2 Comments

There is no other choice really. We must hang on. We must always hang on.

So often this is easier said than done.

Last weekend I stayed up all night Saturday digging out from under a pile of nonsense on my desk. It was regular stuff that I had let pile up. It was junk. And it was medical bills.

There were 7. Not explanations of benefits, but actual bills.

I am fortunate to be fully capable of paying my medical bills. The part that is so often a struggle is sorting out WHICH bills NEED to be paid. Between Meghan and I we are at at LEAST 2 appointments a week. And that is a really good week. Some are close, and some are far, but they are still blocks in our daily calendar.

I try to remain very organized about where we were on which day – but it is a formidable task that sometimes gets away from me. Both of our insurance companies have moved to electronic storage of claim status, which is really helpful. Except for my husband’s, my secondary, which won’t allow me access to my records, in some twisted HIPPA attempt to protect me.

But, I digress. It was about 5 AM on Sunday and I was tired but pleased. I had pared down the pile and was left staring at these bills. I sorted, cross referenced the bills to processed claims, and printed what was necessary. Only one of the 7 was for something I actually owed. The others were clipped with notes to assist me when I got around to teaching people how to do their job billing when there are two insurances. When I could combine the energy with time to spend on the phone, during business hours, while working a full-time job.

I was ready to leave for the grocery store by 6:30 AM. I am grateful for the stamina that allows me to pull that off every once in a while.

I got to thinking about it though, and its been on my mind all week.

We seem to have a good handle on #beatingcowdens. But, really the day-to-day living with it is not for the faint of heart. It is that day-to-day that is wearing on me.

We are, my daughter and I, the “healthiest looking sick people” you’d ever want to meet. I am grateful. I am lonely. I am tired.

One thing blurs into another. Someone asked me how I was spending my weekend, and I replied, “trying to return to zero.” I think she thought I was nuts. I have long passed hope of relaxation or socialization. The schedule is so insane that the weekends are for getting it all re-set.

It’s not all bad. Some of it is swim practice and theater- normal teenage runs. I don’t mind those.

And even though our physical therapist, and our chiropractor are lovely, I would prefer to meet them for a social call than so often at their offices. The orthopedist is a delight. So smart, and so personable. Yet- visits every three months I could do without.

Every step seems hard. I have the unshakable sense that not many people do their job with integrity or pride. There is so much energy getting through each day, that the residual battles over copays and forms can sometimes be too much.

It seems that any variation to the tightly planned schedule which balances practice and appointments (often layering many things into one day at precise intervals) sets off a chain reaction that is hard to recover from.

Which brings me to the problem of when things go off track completely.

The ‘Lymphangiomas’ on my spleen were first found in 2012 after my diagnosis. They were an incidental finding during the many screenings I underwent during that time frame. They were to be monitored via ultrasound.

They grew. A bunch. And they keep right on growing. Annual ultrasound monitors their measurements. Currently there are at least 4 of them and they are bigger than the spleen itself.

You may not remember, but in November I drove myself to the Emergency Room when I was concerned about this very same spleen. November Post- “You Might Have Cowden’s Syndrome if…”

It held on then, and I was released.

The most recent ultrasound was in April. One of those lymphangiomas grew a centimeter in 2 of three directions. That’s quite a bit of growth.

They are benign. They are vascular. They are growing. I am not. We are battling for space. I am stalling on the inevitable.

I know exactly where my spleen is. I can trace it at all times. It is not painful, but really annoying. I’m trying not to let it bother me. Its kind of like a friend who will soon be moving away, forever. I will miss it when its gone.

I’m used to surgeries that send me on my way in hours. This one seems a little more dicey.

The oncologist said, “It’s not cancer, so we’ll deal with it when you’re symptomatic…”

This week I met a new primary care doctor. She was fine. I’ll need her for pre operative clearance. Lesson learned during the February surgery debacle was to have a “primary” available. I have a great deal to teach her. Maybe she will want to learn. At least she will be able to complete necessary paperwork so someone can check their boxes.

Checkbox with green tick

She examined me, and then the area where my spleen is housed. She was confused as to why it is still in my body.

She had a suggestion for a doctor. I asked if she knew a surgeon. Her plan was to send me to a gastroenterologist to see who he thought I should go see.

Like I said, she’s got a lot to learn, and we don’t have time for unnecessary stops.

I found the surgeon I want to meet. I read all about 15 surgeons from 4 hospitals. I want to try him first.

I sent an email to my oncologist to see who she recommends. Not only was I not thrilled, I was more sure that I want to meet the one I picked out.

Last week the hospital that manages my care wanted me to see a genetic oncologist. I called for an appointment. They wanted my genetic testing. Then they told me I would see a counselor first. I explained there was no way I was spending time with someone who knew less about my disease than me so they could tell me about the effects of the diagnosis.

Nope. Double mastectomy. Hysterectomy. About ready to lose my spleen. Kid with 18 surgeries. I’ve got this. It’s relentless. I know. And I have no time to be told again.

So, the appointment I was requesting was with the “director” and there are “steps”.

Not to sound too arrogant, but I don’t need anyone I have to jump through hoops for.

I sent an appointment request on-line to the surgeon I want to meet. He deals with abdominal tumors all the time. Of course, not splenic lymphangiomas, being that this article says there are only 189 cases from 1939-2010! But, he spends his life operating in that area. He’ll be my guy.

From – http://www.archivesofpathology.org/doi/full/10.5858/arpa.2013-0656-RS?code=coap-site

And if he’s not – I’ll find another.

I’m not sure when, but I know in my heart it’s not if anymore. This has been the long goodbye for my spleen.

Now the plan is to get it all set up on my terms before it becomes a medical emergency.

Game on.

Tick tock.

I’ve got a really strong knot at the end of my rope. I’ll climb back up. Until then, I’ll just hang out right here…

#beatingcowdens

Rare Disease Day 2018

Published on February 27, 2018February 27, 2018 by beatingcowdens2 Comments

I took today off from work.

Sadly, it was not to enjoy the almost 60 degree February day.

Today was doctor day.

And as I traveled two hours for the 17 mile trip into Manhattan this morning, I had plenty of time to think about World Rare Disease Day, tomorrow, February 28th.

Rare Disease Day 2018 will pass for us unlike the last few. In recent years my family, spearheaded by my daughter, has held a sizable fundraiser to draw attention to Rare Disease Day. Our goal was always to raise awareness and funds to support research and treatment of our Rare Disease through the PTEN Hamartoma Tumor Syndrome Foundation. My girl needed some time off to address some things on her mind and heart. I gave her that time. She is still working hard, but she has already expressed an interest to join me in planning an event in October of 2018. Stay tuned.

While I was driving, I thought a lot about RARE. It has so many connotations.

Sometimes I think of snowflakes, and rainbows, and unicorns. I think of pleasant, beautiful things. Some of the buildings on the skyline look rare. Rare can be a thing, a sight, an action or even a feeling.

Rare is defined by Dictionary.com as:

adjective, rarer, rarest.

1. coming or occurring far apart in time; unusual; uncommon:

a rare disease; His visits are rare occasions.

2. thinly distributed over an area; few and widely separated:

Lighthouses are rare on that part of the coast.

3. having the component parts not closely compacted together; not dense:

rare gases; light-headed from the rare mountain air.

4. unusually great:

a rare display of courage.

5. unusually excellent; admirable; fine:

She showed rare tact in inviting them.

Rare can mean remarkable, wonderful and exciting. It can mean fascinating, and intriguing.

But life with a Rare Disease reminds you often, that RARE can have many other connotations.

A quick look at thesaurus.com generated these synonyms to RARE:

Synonyms for rare

adj exceptional, infrequent

Quite a list, right? And, if you really look with an honest eye, not all of them have super positive connotations.

Strange, uncommon, unthinkable, unusual, deficient, flimsy, tenuous, (and no this isn’t a typo, but I had to look it up) unwonted…

These are not the words you’d use to describe a beautiful natural event, and probably not the words you’d pick for a dear friend.

Yet, these words also mean RARE.

I set out today to get screened by 3 of my many specialists. The cancer risks with a PTEN mutation are almost astronomical. It becomes a game of “when” not “if” in so many cases, and the vigilance required to seek out the cancers so they are detected early can be overwhelming. Lifetime risks for breast (approximately 85% as compared to 7%), thyroid approximately 30% to .9%), uterine (approximately 28% as compared to 1.7%), kidney(approximately 24% as compared to 0.8%) and melanoma (approximately 6% as compared to 1.1%) eclipse the general population. (These numbers were midline from a graph in this link) www.myriadpro.com/services/clinical-summaries/gene-pdf.php?gene=pten&allele…

The risk of recurrence is also great, and that of developing a second, primary site cancer is also noteworthy. So, having had a double mastectomy with a great prognosis, does not eliminate the need for biannual screening. I love my breast surgeon. She is one of the best. She and I are both always pleased when she can tell me everything is good.

But, I held onto her a little longer today. I told her I was in the market for an internist. I need someone to play “case manager.” I need someone to be my doctor. She paused and furrowed her brow a bit.

That isn’t an easy request, she told me. I said I just need someone willing to learn a little, and consider that I don’t fit in a “box.” I need someone who will partner with me. She told me she’d led me know if she thought of anyone.

I’m not hopeful.

I waited down the hall for the hematologist/oncologist. When she was an hour late, I walked the half mile (in jeans and compression stockings from Wednesday’s surgery) BACK to the main hospital to see my endocrine surgeon.

She may be the weakest link in my chain right now. She scanned the remains of my “lumpy, bumpy” half thyroid that the surgeon 25 years ago thought would be an asset to me. She scanned a very slowly growing lymph node in the area that went from .6mm to .8mm. She told me to get some blood drawn and that all looked good. I showed her a recent chem panel. She pointedly ignored every out of range number, and zeroed in on the calcium level. “Good.” And she handed me back the papers. Then she ordered a short-sighted list of thyroid labs that I would never tolerate for my daughter. I was out of her hair in 15 minutes.

I walked back to the cancer center thinking “rare” thoughts.

I waited again for the oncologist, who was as always pleasant and happy. She examined my spleen, and what she could feel of the 4 hamartomas that live there. She felt nothing out of the ordinary, and ordered my abdominal sonogram.

I showed her the same chem panel I showed the endocrinologist. She agreed the irregular labs should be repeated, but did not feel concerned. I asked her about an internist.

She froze. She suggested a new genetics person that had recently come to the hospital. I may go for a consult.

But, and internist? I asked again.

Hesitation. Almost painful look. She explained that the internists have to move fast. They don’t really have time to get to know a new condition. She couldn’t be sure if she new any that would care properly for me. She basically gave me 4 names, but told me I was best left to do it myself.

Even though my rational mind understands it to a degree, I felt like I’d been punched in the gut. I have homeowners insurance, auto insurance, and life insurance, just in case. I have a 401K and am part of a pension system. I do my best to prepare. And I was basically told, by a major NYC hospital, that I stood little chance of finding an internist who would take the time to manage my case.

That scares me. I do it. I always do it, and I will continue to do it. However, I am managing health care for myself and my teen. And it’s not just routine stuff. Cancer is looming, lurking, and mocking us. All I want is someone to check behind, proofread per se, and make sure I am checking all the right boxes. I want someone who will know that a test result in us may not mean what it does in someone else. I want someone who looks me in the eye and knows I am a human who plans to live a long time even though her body doesn’t play by the rules. I want a name to put on the line every time someone asks me for my “primary care” doctor, and I want that doctor to at least glance at every pertinent paper sent to them about my health.

I got my blood drawn at the hospital lab.

It’ll be in the online system long before anyone ever discusses it with me. I’ll scan it, and hope that there are no alarm bells to be sounded this time.

RARE isn’t just snowflakes and unicorns.

RARE is that kid, who everyone looks past. The one without the cool clothes, or the right hair. RARE is the one who no one wants at their lunch table, and the one who is conveniently forgotten on fun excursions. Because, what it RARE can’t do what everyone else can? And anyway, truth be told, RARE has cancelled one too many times. RARE doesn’t really fit in anywhere. RARE is brushed aside, in hopes they won’t bother anyone, or maybe they it go away. People are afraid of RARE. They perceive it as fragile, needing too much effort, or too hard to understand. Sometimes people even envy RARE, without thinking through the late nights, the terror, the medical strategies, the constant advocacy. RARE wants to fit in, but it never will.

RARE is too much new, and too scary for a doctor to own more than one piece.

We are scared of things we don’t understand.

Right now, RARE is a bit of a loner.

We are all RARE in some way.

But, RARE as a lifestyle is not an easy road. And it is not a choice.

The choice comes in what we make of it.

Rare Disease Day 2018 will be a little different this year for us, a little more quiet. But, I hope there is no doubt, that we will come back.

RARE does not give up. Ever.

#beatingcowdens

A REAL Love Story

Published on February 13, 2017February 13, 2017 by beatingcowdens2 Comments

I’m not one for Valentine’s Day. Never was. It didn’t matter to me if I was dating or single, it just never made sense. The “Hallmark Holiday” seemed determined to bleed money out of people who shouldn’t have to work so hard to prove themselves one day a year.

If you love someone, prove it every day. It’s not about the big things. It’s about the things that matter.

Picking up someone else’s mess, doing someone’s laundry, a random hug, an “I love you” that’s real and spontaneous, treating each other respectfully all the time… and so on…

My husband and I decided years ago to exchange only cards on Valentine’s Day. I already know how much he loves me. We do what we can to get a little something for our girl, well, just because. And we, we try to get organized and celebrate our anniversary. The day we stood before God and our families and friends and pledged our “for better or for worse,” and “in sickness and in health.” Because those vows – they matter so much.

Tomorrow I will head to Manhattan for three of my annual appointments, carefully timed to cost me exactly one day off of work. I will see the oncologist, the breast surgeon, and the endocrine surgeon, with some blood work thrown in for good measure, and the results of a sonogram from Saturday checking on that bumpy spleen of mine.

I will return in time to have parent conferences at my daughter’s school.

Not a “romantic” day by any means.

I will wear a red shirt that says “Strong” and I will make it work with a smile.

Because, I will be thinking of this heart.

Last year in January, my Grandfather fell. It was after a trip to the grocery store. We later found there was stroke activity, and that January day began a slippery slope that ended with his passing on March 3rd. If you know me personally at all, you know my grandparents were larger than life to me. That’s it. They were 70 years married, and even though Alzheimer’s had largely robbed Grandma of much of her memory, my Pop loved her with his whole heart.

Last year, coincidentally, my grandparents spent Valentine’s Day in the nursing home at the same time. And, although I’m not totally sure either was aware of the date at the time, we were.

A few days after Pop passed, my uncle sent the picture above. He was cleaning out the linen closet and tucked in between some things was this heart. By every rational account it must have been purchased by Pop, for his love, on that day in January when he made his last shopping trip alone.

My Pop was a man that planned ahead. He was a man who always thought of his wife, and lived every day loving her with his whole heart. And my Grandma, well, she’s pretty special herself, and she’s always been quite fond of chocolate.

Nothing flashy, nothing fancy. But he saw the hearts early, and thought of her. That’s how he rolled. Always kissing her hello and goodbye, clipping roses from their rosebush, and doing what he could, even when there was nothing more he could do.

My newsfeed, and my heart have been full lately, of people struggling and suffering. The prayer list is long. There is pain and sadness and worry. But within, there is also love, and gratitude and compassion.

Life is about balance.

I’d rather spread out the love to last all year. I’ve got plenty to share.

For it is with love alone that we hold each other up.

Love for those around us, and those who’ve gone before, motivates us.

Grandma is still “here” but many of you understand when I say I miss my grandparents. The love though, the love and the example they set is imprinted forever in my soul.

It is with Love and Gratitude that we find the strength to remain

#beatingcowdens!

Compassion Saves the Day!

Published on July 25, 2014July 25, 2014 by beatingcowdens2 Comments

Instinct.

I don’t know why I second guess her instinct. Maybe one day I’ll learn.

We arrived in Manhattan early. We dropped Mom off so she could get to her appointment. We parked the car at a better rate than I expected. We walked a few blocks nice and slow. And we arrived at our 9 AM appointment by 8:35. Paperwork completed – we were sent down to the waiting area for MRI.

An empty room, and a few minutes to spare, I stepped into the lady’s room. No sooner did I get in there than I heard Meghan speak. “Calling us already?” I wondered.

I joined her in the waiting room and the shell-shocked look on her face was a mix of horror and confusion.

“Mom, I don’t want him to stick me.”

“Relax, you don’t know. He might be very good.”

“I’m telling you Mom, this is NOT going to go well.”

And, as I tried desperately to calm her rising anxiety, we waited.

We got called back and locked our things in our locker. The technician sized her up and decided her carefully planned outfit would work and she didn’t need to change. Then I asked him if I had to remove my jewelry.

“You can not go in.”

Calmly, ” I am sure I can, she has had countless MRIs and I have stood beside her for every one.”

“I will have to ask my boss. And, we have to see if the braces are OK.”

“But, I told them about the braces when I booked the appointment.”

“Well this is a very strong magnet.”

And with that he led Meghan inside towards the machine and she promptly backed away.

“Mom, my braces!”

To which the technician replied, “You’ll have to reschedule.”

And then the anxiety took hold and my girl began to shake.

“I am very very angry,” I began in my “not so nice” voice. “You have no idea the amount of planning that went into this, and the amount of worry that has been expended by my daughter.”

“I understand…” he began, in his patronizing, not very helpful voice.

And I honestly don’t recall if he got in another word, because Mamma bear was loose.

I can’t even quote myself, because I was that flipped out by this man who dared to tell me he understood. See, I can be reasonable. I really can. You can tell me you are sorry. But you can’t tell me you understand. Because just like I don’t claim to understand anyone else’s life – no one should flippantly tell me they understand. At least not until they have seen their child through at least 11 surgeries, countless procedures, ridiculous numbers of blood tests, multiple hospitalizations, and countless sub-par phlebotomists. Not until they have sat awake at night calming their child’s trembling fears by touching them – just so they stop shaking in their sleep. Not unless they know what its like to have candid conversations about pathology reports and the virtually insurmountable malignancy fears. Unless they have heard their young girl ask if her children will one day carry this mutation that has caused her so much heartache. Unless they have heard their 10-year-old consider whether its worth it to have their own children… one day.

See sometime two weeks ago we went for a routine follow-up at the vascular surgeon. He did a sonogram of the AVM that caused so many years of heartache, and surgery in 2009, 2010, 2011, and has been blissfully quiet since the last surgery there in February 2012. And he saw some “spongy” spots in there that needed to be looked at. So we scheduled the MRI, knowing that we “saw this coming.” The Celebrex had been destroying her stomach and controlling her knee. The ultimate catch-22. So the worry was about the MRI, and the needle for the contrast, and the wonder about WHEN, not IF the next knee surgery will be.

And all this was bottled up inside of me and came spewing out at this man who dared to casually tell me he understood what it meant to”reschedule” an MRI that had been deliberately scheduled based on time and location to correspond with a trip to the oncologist, and spare her an unnecessary day wasted at a doctor’s appointment.

And as I cried for a supervisor, Toni came flipping around the corner. She sized up the situation, gave Meghan a blanket, sat her down, and told me she was going to fix it. And she did.

I have never in my life seen a supervisor in any capacity who was beyond competent, and extraordinarily compassionate. She got INTO A TAXI WITH US, and took us across town. She walked us into the facility, the entire time reassuring Meghan that she had a special nurse who would handle the needle. I saw the look in Meghan’s eye that said, “That’s what they all say.”

But Toni didn’t lie. Within minutes of walking into the facility we were greeted by Allison, and Manny. Both talked to Meghan. They looked at her arms. They told her a blind person could catch her vein. They told her it would be a butterfly. They told her no IV. They let her pick who would do the contrast dye and did it in such a reassuring way that she knew neither would feel badly if she picked the other.

MRI Dog (Rocky) always helps too... — MRI Dog (Rocky) always helps too…

Then Michelle and Chad made her feel like an old friend. They were so warm and comforting. They positioned her just so, and reassured her in such a way that she took this incredible deep breath. And when Allison came in to give the contrast dye, Chad held one hand, and I held the arm and she never even felt the needle. Chaos turned into probably the most successful MRI to date. Sweet relief.

We had NEVER been in a machine like THIS before!

But we left the facility only for me to realize we were now clear across town without our car. I held my breath and hailed my first cab. (Put that on the bucket list, and took it off in the same day!)

An hour with the oncologist, always plays with my mind a bit, but there will be time to process her recommendations for vigilant screenings necessary with Cowden’s Syndrome.

We left at almost 1, feeling quite like we had already lived several days. Then there was this matter of the “Treat Shop” on the upper West Side. I had planned to go because it was so close to the first MRI site… but not too close to our car. I walked, she limped by the end, and I am sure I will pay for this for days, but we made it. A small store full of glorious Gluten Free treats. And there were 6 dairy and soy free options as well. Heavenly – and my daughter said, “worth the pain!”

An afternoon playing with a friend from school, and the sound of girls giggling, made the horrendous morning, and the most unforgiving traffic I have seen in recent memory begin to leave my neck and shoulders. As the tension began to release I found myself reflective. Hopeful. But still unsure.

Watching her at ease on the couch I am reminded not to plan. I am reminded to trust Meghan’s instincts. I am enjoying the cool breeze, and for the moment the uncorrected mess.

I am grateful for Toni, and Manny, and Allison, and Chad and Michelle. If only everyone took their jobs so seriously. Healthcare, and the world for that matter, would be in a much better place.

Even if just for today they made BEATINGCOWDENS a little easier.

Mother, Wife, Teacher, Advocate

Published on June 3, 2013June 4, 2013 by beatingcowdens1 Comment

First I was a daughter. A sometimes mousy, sometimes mouthy daughter. I was respectful, but hated to be stepped on. I wrote letters to the editor when I was annoyed. I let people know how I felt.

Then I was a teenager. I was full of opinions and was quite sure they were all right. I was willing to debate for hours, or sometimes stay really really quiet – stewing in my personal assurance that I was right and they weren’t.

I spent 4 years away at college. Even though I didn’t want to – lol. I will be forever grateful to my stepdad for his insistence that I drive, AND go away to college. I am not sure I would have done either. At college I learned to stand on my own two feet. I met all sorts of people from all walks of life.

By the time I hit my 20s life had educated me some. I still held strong convictions, but I was able to accept that it was ok for others to have their own. I gained the belief that as long as people were respectful – we could disagree.

In my 20s I met my husband. A match that many thought was destined to fail. And unlikely pair we compliment each other in every way. He was my missing piece.

In my 20s I became a teacher. A lifelong goal realized. I worked harder than I ever had in my life to be the best I could be. I recognized the magic of teaching. I became addicted to the “spark” in their eye when they “get it.” I came to see that my presence and my attitude were as important as my lessons. I taught/teach my students, my children – to see the best in others, and to tolerate and embrace differences respectfully.

In my 20s Mom had cancer. And I learned what it was like to be scared. And I learned what really really matters in life. And she fought, and she won. I always appreciated my family, but I learned to appreciate them even more.

In my 20s I got married. I got my Master’s Degree. We bought a house. We tore it apart. We fixed it up again. We got buried in debt. We worked hard to get out.

Then – just about when I was ready to turn 30 – we had Meghan.

Mom said you do more changing in your 20s than in your teens. She was right. But as my 30s come to a close – I think they beat my 20s hands down.

In my 30s I learned to love my heart, outside of my body. I learned that I would never be as important as that little human we created out of love. I learned about family all over again.

In my 30s I learned to live without sleep. I learned to endure tears and screeching and pain as my heart ached for my baby girl. I learned that colic can last way longer than 3 months, and I learned to bounce and rock and sing and move for hours and hours on end.

In my 30s I learned how to balance two full time jobs, as a mother and a teacher.

In my 30s I learned what it was like to be truly terrified, as your baby went into the hospital, and into surgery over and over again.

In my 30s I became really close with God. I learned that my relationship with Him transcends walls and buildings and people. I learned gratitude, and I learned not to be shy about my faith.

In my 30s I learned that convictions can change. And the things I was sure I was right about 5 or 10 or 15 years ago…well, maybe I wasn’t so right after all.

In my 30s I learned that close friends share bonds that go past time and distance. I learned that even though I miss them, they are there when the going gets tough. I learned that EMail, facebook, and the internet, when used properly – are some of the biggest blessings in life.

In my 30s I learned that you have the power to make changes in your life when situations, circumstances or people have you angry, sad, hurt, mad, or generally annoyed. I learned doing something is way more rewarding that complaining.

In my 30s I learned if you believe in something enough, if you believe in someone enough, well even if you stand alone, you have to stand up for them. And I learned that if you do – they will be your friend forever and ever.

In my 30s I learned what it was like to hear the words “You have a Rare Disease.” I learned words like “Cowden’s Syndrome.” I learned about “tumor suppressor genes,” and “genetic mutations.” I learned about risks and tests that could take worry to a whole new level- if I let it.

In my 30s I learned what it was like to hear the words “You HAD cancer.”

In my 30s I learned which body parts are “extra.”

In my 30s I learned – because they made me- what it was like to tell your 9 year old, “The doctors are pretty sure you will have cancer.”

From mousy to mouthy.

From school teacher to Mom.

From “victim” to advocate.

All these things make me who I am today.

So much has changed, and yet at my core, my heart – I am the same.

I feel. Deeply and truly. I care. Often too much. I laugh, and I love with my whole heart. I know pain, and I know joy, and I have been intimate with both. I know fear and bravery. I know that I am not always right – but when I am… watch out. Because little will stand in my way.

I know life is not fair.

I know God is Good.

This weekend I went to 2 wakes. One for a woman who had lived a full life, and another for a young girl who sparsely got the chance. There are too many wakes. There are too many things that don’t make any sense. Too many people gone way too soon.

I can wail and cry and wither away in my sadness. I can let fear win – or I can stand strong.

Cowden’s Syndrome tries to win. It can strike fear in my core with a headache, or the sighting of a lump, or the feel of a bump. But I will not let it paralyze us. I will not let it win.

So we have our team of doctors. We have our visits scheduled. We check it all. Sometimes its tiresome. Sometimes its discouraging. But I would rather be out in front of the boulder – than under it.

This is really how I view the race against Cowden's Syndrome — This is really how I view the race against Cowden’s Syndrome

Through it all I know Meghan is watching. My student – learning from how I react, how I fight, how I handle adversity. My teacher – teaching me bravery, courage, candor, tenacity, and stamina.

I do the best I can to show her that its important to stand up for what you believe in.

I think she gets it. I know I do.

The 30s have been a ride, and I still have a few more months to go.

In my 30s I learned what it was like to total a car. I learned the frustration and injustice that often goes along with accidents that they would like to tell me I am powerless to fix. I also learned that even though there are in fact some things I can not fix – there are others I can and will speak up about.

If you happen to catch this before 10 PM – try channel 11 news “Help Me Howard.” Working with the neighborhood to change a few things at my car accident site.

https://beatingcowdens.com/2013/06/04/howard-works-to-put-a-stop-sign-in-a-deadly-staten-island-intersection/

Advocacy. Empowering. Invigorating. Much more fun than lying in wait.

We have to keep our energy up, standing up for what we belive in while we are “Beating Cowden’s!”

Happy Birthday to my boobs!

Published on March 4, 2013March 4, 2013 by beatingcowdens12 Comments

Remember where you were a year ago?

I do.

A year ago this evening I was pacing the floors. Making sure Meghan was packed for school. Triple checking my hospital bag. Planning my last meal by midnight, and pacing the floors – quite sure I wouldn’t sleep.

I was right.

I hadn’t arrived at that moment in my life by accident. It was the result of years of breast biopsies for suspicious masses. MRIs, sonograms, mammograms – and a mother who was a bilateral breast cancer survivor. Not to mention my diagnosis of Cowden’s Syndrome that had been confirmed only months before I met the warm, caring, and decisive surgeon that was about to remove part of my body. Don’t wait till the summer – she somehow convinced me. March 5th. Get it done.

One year ago, on the morning of March 5th 2012, after vomiting repeatedly from terror, my husband and I left and headed to NYU hospital for my “prophylactic bilateral mastectomy.”

We checked in by 6 AM. I can remember every detail of the morning. It is imprinted in my subconsciousness. It may fade over time – but for now…

My brother in law called my cell phone by six. We prayed together. Then, I just focused on breathing.

Checking in takes forever. Everyone stopping in. Lots of waiting. I paced that small room so many times I swear my footprints are probably still there.

And my husband – my pillar of strength – just waited with me. When I wanted him to pay attention – he stopped and held my hand. When I wanted him to ignore me, he dutifully read comics on his iphone. I would not have wanted to be him.

I had to explain to the resident filling out the paper that I was not having “tissue expanders” put in. Well this was not an easy concept for him. Apparently that is just what everyone does. The expanders are placed during the mastectomy, and then “filled” until the tissue expands to the size you would like, and then the silicone is placed.

Well I had already had a long talk with my plastic surgeon. I had no desire to have giant boobs. Nope. I was sure.

She can keep her award... — She can keep her award…

At 38 years old, and the mother of a nervous 8 year old, all I wanted was to leave the hospital and not have to return for another surgery. (The sweet irony of that wasn’t realized until I returned 10 weeks later for my hysterectomy… but anyway)

I had convinced the plastic surgeon to use whatever silicone implant she could – and put them right in. After a lengthy discussion, she agreed. It was more important for me to get right home to Meghan.

This resident was having a hard time wrapping his head around this, but finally we got the papers right. They were to put in whatever one of these fit best – preferably a matched pair.

Finally it was time to head to the operating room.

I have had lots and lots of surgeries, but the thought that I was engaging in such a major procedure “prophylactic-ally” was literally making me weak at the knees. Fortunately I managed to hook up with an absolutely awesome surgeon/plastic surgeon team. Two women who are talented, compassionate, and understanding. They gave me the peace of mind I needed right before the anesthesia. The last words I recall before I woke up – “You’re doing the right thing.”

They expected a “clean easy procedure.” After all I had had an MRI just a month prior to confirm I was cancer free.

Recovery from anesthesia isn’t my forte, although I have improved with experience. I got to visit with my sister, and enjoy my husband.

The peace I felt after this surgery can not be understated. I was so relieved. The storm had been calmed. It was done.

I left the hospital about 28 hours later on March 6th. I couldn’t wait to see my girl. The drains were still in place and they would stay for another week, but the hardest of the hard work was done.

So, on March 5th – my boobs are officially a year old. At least that’s the day I adopted them.

And what a year it has been.

A week after my “prophylactic” mastectomy, I held in my hands a pathology report that clearly stated I had DCIS – early stage Breast Cancer. Among the other “precancerous” conditions embedded in that report was the reality that I no longer had to be concerned with the “what if?” It was done. I was OK. By the Grace of God alone – the cancer was out before it was ever a problem. And, whenever I doubt, or get angry or frustrated by our Cowden’s Syndrome journey, I am reminded of that moment. Without Meghan, and without her diagnosis. I would have never proceeded with such an aggressive surgery. God gave me my little girl, and spared my life. We will use that gift as often as we can.

The weeks of recovery went smoothly, with lots of help from mom.

And then it seemed – no sooner was I back at work, that I was being told by another surgeon that I NEEDED a complete hysterectomy – now. So, in May we went back. This time at least everything was benign.

This is the year that included 2 surgeries for Mom and a thyroid biopsy for Meghan. It included a car accident that I am still healing from. (And the very first thing I checked after I realized I had been in an accident was that my silicone was intact!)

It included Grandma’s fall, and ongoing recovery.

It included circumstances that caused me to step away from my church, and blessings that led me to a new one.

This year I laughed deep laughs, and I cried gut wrenching tears. I got re-acquainted with old friends, and I met new friends in support groups online.

This year I learned there are some benefits to small silicone boobs… (with no nipples!) I got to go bra-less for the first time in YEARS!

This year we vowed to make a difference,

This year we gave out over 2,000 denim ribbons, and taught a whole lot of people about Cowden’s Syndrome and Rare Diseases, and the Global Genes Project.

This year was only the beginning of the rest of our lives.

One year without my old boobs. One year with the new and improved CANCER FREE version. One year of countless blessings. One year of boobs that will never sag!

HAPPY BIRTHDAY TO MY BOOBS!

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.

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!

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.

We are special. We are 1 in 200.000. There are 2 of us. And I am tired.

But, I haven’t lost my perspective. We are so blessed.

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?