Dear Mom…. Mother’s Day 2018

Published on May 13, 2018May 13, 2018 by beatingcowdensLeave a comment

Dear Mom,

You’re small but mighty. You’re a force to be reckoned with. You are a role model, and an inspiration. You are a survivor. You never give up. You were my very first hero.

I’ve learned a whole bunch through the years, and I’m quite sure I still have a ton to learn. This year, as you celebrate your first Mother’s Day without your own mom, the enormity of that is not lost on me. I just wanted to make sure you know that.

You raised three of the most different humans imaginable. And, yet, you did an awfully great job on each of us. That’s mostly because you did the best you could to give us what we needed. An impressive juggling act.

For years you told me “You’ll do more changing in your 20s than you ever did in your teens”. Truth. But, did you stop there so as not to scare me? The changing in my 30s- I still shake my head in amazement. And I’m quite sure now, half way to 50 – I’ll look back at 40-year-old me and find a stranger.

Nothing is easy. Nothing ever was. I remember.

Yet, I don’t remember a life couched in sadness or despair. I remember focus, drive, determination, and a whole lot of Never Give Up.

I remember a single mom who worked two jobs so we could have all that we needed, and lots that we wanted.

I remember you positioning us with your parents, so that right upstairs would be stellar role models. I know it must not have been easy. We don’t always agree with our parents. And, now, as a mom myself, I get how it might have been a challenge for you sometimes. But, I can tell you with confidence, it was right. Living downstairs from Grandma and Pop was a fantastic, life changing move. Thank you.

I remember the hours you worked, in the city all week, and then on your feet every holiday and every weekend, serving other people’s parties. I can only imagine how tired you must have been. Only now do I have a much better idea. And, I have a much better understanding of how you just kept going.

You made choices. You chose to keep us involved with all our families. You could have chosen differently. You had every right to. Thank you for choosing to allow me to choose.

You modeled for me, things I never knew I’d need.

And every day, as I dig deep to give everything I can to Meghan, I think of you.

You, and “The Little Engine that Could,” and Tinkerbell too.

Thank you for being tough as nails, and soft as a marshmallow at all the right times.

Thanks Mom, for the things I can put into words, and the things I can’t. Thanks for the stuff you just know, and the things in my heart.

Please know, no matter how old I get, or how busy you think I am, a call, or a visit, or even a text with my Mom brings a smile to my face.

Every. Single. Day.

Happy Mother’s Day.

Thank you for preparing me for #beatingcowdens, long before we had any idea of what was coming.

I love you forever.

I love you for always,

Lori

Triage- A Way of Life

Published on April 26, 2018April 26, 2018 by beatingcowdens5 Comments

Triage. The word hangs with me like the memories of countless Emergency Room visits.

Triage. Take care of the most serious first.

It’s the reason we might wait hours for stitches, and barely a moment for a trauma.

I get it. It makes sense in the ER. It also makes sense on the battlefield, or in other places where there is widespread injury to be treated.

The thing is, you typically don’t stay in those places FOREVER.

Places we equate with triage are not places of comfort. And that’s where this life with Cowden’s Syndrome can get tricky.

You see, lately I can’t shake the feeling that life is triage. 24/7/365 damage assessment, and handling the most critical first. Vigilant. Hyper-vigilant. ALL. THE. TIME.

When you live with a chronic illness, a syndrome that causes cancer by its very definition, it is so easy to get wrapped up in monitoring and preventative care. And then there are the times that you go for those monitoring appointments and they require their own follow-up. This condition can easily morph into a beast that can swallow you whole.

And we’re at it times 2.

What I refuse to allow this syndrome to do is take away any more from my daughter’s life than it has. To the best of our ability, she will do “teenage” things, and she will do things she enjoys.

But, lately that has become quite the juggling act.

I am monitored twice a year by endocrinology (post thyroidectomy), my breast surgeons, and dermatology. I am monitored annually by gyn oncology, and oncology. This is post-bilateral mastectomy (stage 1 DCIS) and post hysterectomy. I am monitored every 5 years for colonoscopy. I am also monitored with abdominal ultrasounds for 4 hamartomas on my spleen, and a cyst on my kidney. This may not seem all that impressive, but those are just the appointments if everything goes well. That’s not additional scanning, blood work and biopsies. None of them are close to home either.

Not to mention, I am still searching for a local primary care doctor. In addition, there is dental work, both routine, and the emergencies the stress from grinding my teeth keep causing. I’ve been referred to another oncologist who specializes in genetic diseases, and I need to get in to see her. I just completed vascular surgery, with its pre and post op appointments and recovery as well.

That’s just me. Me, and my full-time job. And, like every mother, my needs are not the most important.

My girl sees endocrinology twice a year. She is still, 4 years post-op, trying to get thyroid function balanced. She sees gastroenterology, and dermatology twice a year. She also sees an adolescent gyn twice a year, courtesy of precancerous tissue already uncovered in her teenage uterus. She sees a chiropractor every 2-3 weeks for pain management. Right now, amid diagnosis of the small brain tumors, she is seeing neurology every three months for new MRI scans. She sees orthopedics every 8 weeks. They have been monitoring her knee for years, and recently stubborn tendonitis in the shoulder. There have been a few MRIs of late. She has seen physical therapy weekly since the fall, and is now working on twice a week.

She is tired. Partially because of her schedule, and partially because of her sleep patterns. Despite a regular bed time, she struggles to get quality sleep. It is hard to turn her brain off, and for her to get rest.

She has developed Post Traumatic Stress Disorder (PTSD) and anxiety, secondary to consistent medical trauma. She is working through it – but, like everything else, it is a great deal of work.

She is awaiting word that her service dog is ready. The call could come any time in the next 6 or so months, but we are hopeful this dog will help her through what can be some trying times.

She is an honor student. She is a swimmer – at least 5 days a week, for 12-15 hours a week. She is in weekly vocal lessons, and a theater group that meets 3.5 hours a week. She enjoys a local church youth groups.

She has food allergies – restricted from dairy, gluten and soy. And seasonal allergies to all things pollen.

None of this includes normal things. Like dentist and orthodontist visits, or even haircuts.

It is easy to get isolated.

She has a strong sense of what is right and wrong, and can be rigid in her perceptions. But, life has shown her things most adults, let alone people her age, have ever seen. Just as that strong mindedness flusters me, I refuse to try to break it down. It is that same will that has gotten us where we are.

And where we are, is in TRIAGE.

My iphone calendar is with me everywhere. I prioritize swim and theater over doctors when I can. Physical Therapy is a high on the list right now for pain management and strengthening.

Vocal lessons keep her going, as she can sing herself through a lot of stress. Theater is just a fun group of children, and I am not willing to sacrifice that.

I have a list by my desk of “next up” appointments, and because our availability is so limited, I am often booking months out. We travel to most – NYC or LI. Short on miles – but up to 2 hours each way – often.

We stack them when we can. Two appointments are a bonus, three is a banner day.

And every year about this time I dream of a summer light on appointments. I’ve yet to see it come true. Truth be told, almost every school holiday and every vacation is cluttered with things we need to do, but would rather not.

There is a blessing in knowing what we are fighting. There is blessing in having a warning system in place. But, there are still some days when I’m totally overwhelmed that I wish I didn’t know so much.

Triage.

Triage means that right now the physical and emotional health of my teenager trumps all.

So she swims 5 days. We do PT 1-2 nights after swim. We see “other” doctors midweek on the one day there is no swim. We do voice, and theater on Saturday.

I make my appointments on weekends when my husband can drive. I make my appointments a year out so I can stack three in one day in the summer and on February break. I schedule our surgeries for February of Easter vacation when I can.

I plan our fundraiser now for October, so as not to give it up, but in hopes of finding an easier time.

I research at night. There is always a need to learn what most of our doctors do not know.

I write, when I can. I love it and I miss it, but time just doesn’t seem to allow.

Hair, nails, eyebrows, and things I used to enjoy are forced into holes in the calendar, every once in a while.

Dust builds in places I never used to allow it.

Friends, well I have to trust they get it and they’ll be around when there is a change in the current status of things. I miss them.

Triage.

It starts early in the morning, waking up a teen who just hasn’t slept well.

It continues through the day – my job and her school.

After school is all about making it work. Swim, PT, or whatever therapy the night brings.

There are often phone calls, requests for lab reports, or battles about IEP needs… Emails go through the iphone.

Usually we are out of the house about 13 hours.

At night we pack everything so that we can be ready to begin again.

Triage.

Most critical right now is allowing my teenager to find her way, in school, in sports, and in her life. Most critical is giving her very real scenarios where her disease does not define her, and she is able to achieve in spite of her challenges, not because of them.

In order to make this happen, everything revolves around her schedule. There are opinions about that in all directions. There are people who would tell me I am creating an entitled, self-absorbed human. I don’t pay them much mind, because they haven’t met her.

When I signed in to be a parent I knew I’d be all in. I just never saw THIS coming.

Balance needs to always be in place, where the physical needs of either of us are never overlooked. However, non-essential appointments CAN, and WILL be scheduled around our availability. She will be a happier, and more tolerant patient when she didn’t miss something she loved with three hours in traffic and two in the waiting room.

Triage is meant to be something you experience briefly in times of crisis.

The “fight or flight” response is not always supposed to be on.

But it is.

At this time in our lives we may not always make for stellar company, although ironically, we’d love to have more of it.

At this time, we may say no constantly, to the point where you stop inviting. Trust me. We’d rather go. We actually enjoy your company.

At this time, we are so busy surviving, and taking care of the most critical needs, that anything not immediately essential gets passed by.

We are constantly evaluating order of events, but TRIAGE is fluid by definition. Unfortunately there are so many situations and scenarios, it is hard to see through them all.

Even at our toughest times. Even at our most overwhelmed days. We can look around and find our blessings. They exist in big things, like being able to physically attend 5 practices a week, and little things, like being able to WALK around the school without hesitation or assistance.

We are aware of those suffering illnesses far beyond our grasp. We are aware and we are grateful for the health we do have.

We are also tired. And lonely. And often overwhelmed. We also know this is the way the plan must go for now. And one day it may change.

Triage is fluid.

Life is fluid.

We all do the best we can with what we have where we are.

And we remain steadfast

#beatingcowdens.

Just Do Your Job

Published on March 25, 2018March 25, 2018 by beatingcowdensLeave a comment

I guess as I think about the last few weeks, so often the thought comes to mind that if people would just do their job, thoroughly and with accuracy and pride, many problems could be avoided.

This weekend I compiled a 5 page letter, and a 20 page PDF and Emailed it to the CEO and director of operations of the local hospital that I feel could have done a far better job handling my February 21 vascular surgery. It took a little time to get it out, and it was frustrating, but simultaneously cathartic.

Early in the healing process my sage daughter said, “Mom, you’d never let anyone treat my body like that. Why is it OK to treat yours that way?”

It isn’t my dear. And I know she’s always watching.

I took my notes all through the week before and after the surgery, and then I rested to see if I could get it out of my system. It lingered. So, yesterday, off it went. I told them I’d like the name of who they handed my case off to, by the close of business on Friday 3/30. There’s a post it on my desk. To be continued.

Just Do Your Job.

When I finished that letter, I wrote one to my health insurance carrier. We are fortunate enough to have two, but keeping things straight can get confusing.

Meghan met a new neurologist in December of 2017. When we went to the appointment there was no one to collect a co-pay. I figured they would bill it. Then, I forgot. The news of the finding of a “lesion” was enough to jar me out of my normal routine.

Sometime in January I received an “Explanation of Benefits” and a $35 check from my insurance carrier. This is not uncommon, as often I have co-pays refunded once an office receives the co-insurance payment.

A February MRI and neuro follow-up gave news of in fact TWO 1cm lesions, and some swelling. All of which will need to be watched. I got a bit distracted.

The check sat, with several other checks until March 8th, when I deposited them into an ATM. That was a Thursday. On March 11, I logged onto my online banking to see that the check had a “Stop Payment” and in addition to having the $35 deducted, I was charged a $12 fee.

Furious was an understatement, as I am meticulous about my banking.

Just Do Your Job.

On Monday the 12th I received a letter from Chase Bank explaining their end of the explanation of my fees. My insurance carrier told me that the doctor contacted them on February 15 to ask them to stop payment on the $35 as I had never paid the co-pay.

The doctor never billed me, just reached right to the insurance company. They later admitted never billing me. No apology. The insurance company never reached out to me. Never told me the check had been stopped. I didn’t go to the bank with the check until 3 weeks later.

Within 72 hours my bank had notified me online and by mail. My insurance company had no explanation as to why they never afforded me the same courtesy. My bank actually DID their job.

When I took it to a supervisor over the $12 fee, and my embarrassment, and my annoyance at the number of hours this was taking from my life, she offered me the standard PO Box to send my complaint.

I asked her to do better and she told me to fax the receipt of deduction to her. She said she’d expedite it. It’s been 10 business days. The formal complaint letter is written and mailed.

Just Do Your Job.

Then, there is the doctor who refuses to figure out mail order. My insurance has denied payment of the drug until it goes to mail order. Thank goodness it’s affordable. I’m paying it while simultaneously working out getting him to mail order it.

Just Do Your Job.

Tomorrow, I will make a few calls on our newest denial. I suspect it will take a few weeks to sort out, but I will win this appeal. Because, no one in an office is going to tell my that my daughter has “recovered,… and no further improvement …. is expected.” Nope. Not working for me.

Apparently they weren’t at the swim meet last weekend. The meet that her PTSD might have kept her from without a hard push, but the meet where she DESTROYED all her best times. At that meet I had proof that further improvement IS EXPECTED. Because it is happening.

Just Do Your Job.

That swim meet last weekend was 6 hard months in the making. There has been so much work in place dealing with her PTSD, her anxiety and her panic attacks. She had to make sacrifices and step away from her commitment to a local theater program. I didn’t give her much choice, even though I knew I was probably taking one opportunity at theater from her to give her another at swimming. Parenting is about making tough choices. She’ll be at all the rest of the theater practices. She had to KNOW she could get through this meet.

This event is just exhausting. She has a love/hate battle with it. Sometimes she even catches the “2Fly Flu”

The improvement from entry to finals just shows how much she needed to be there and get this out of her system. She’s got more progress in her.

It’s been a goal to go under a minute for over a year. She crushed it.

When you are 24/7/365 fighting a chronic illness, and in this case a rare disease, no value can be placed on physical strength, actual and perceived. You see there is never a moment when you are not waiting for the other shoe to drop, right on your head. So the need to be physically strong, is a NEED, not a luxury.

I sit here now, Sunday evening again, and I think of all the things I would have liked to do this weekend. I think longingly about how nice it would be, to be in Alabama at the PHTS Patient Symposium, and if not that, then to get a manicure, to catch up with old friends, or even to stop and read a book. But, I know that is not meant to be. Not right now.

For now, at this point my life, weekends are about putting out the fires that creep into the world all week. It is about uncovering the “in box” and fighting the fights that will get my daughter and myself the care we need and deserve.

I like to think it won’t always be this hard. But, if I’m honest I suspect it will be.

The trick is going to come in my figuring out how to keep it from swallowing me up. There is always going to be a fire, a battle, an appointment, or a medical drama. ALWAYS.

This weekend, I had dinner with my husband. I took a walk, AND I went to one store for fun. It’s not much, but it’s a start. It’s a process.

The battles rage on.

Vigilance is required. This journey is not for the faint of heart.

But we are establishing support from afar. We are finding each other.

As one of my groups says #WeAreCowdenStrong

And we, in this house, remain

#beatingcowdens

Superfluous Tissue

Published on March 4, 2018March 4, 2018 by beatingcowdens3 Comments

6 years ago I was trembling with fear. I sat up most of the night. I paced the floors. I was scared out of my mind.

No stranger to surgery, this one was way different.

Sometimes I actually forget things. But, most of the time, especially when it has to do with numbers or dates, I remember.

Six years ago I was only months past the diagnoses of Cowden’s Syndrome Meghan and I had received. Six years ago I was only learning about the mutated gene with astronomical cancer risks that I had passed unknowingly to my girl. Six years ago I was reeling with the knowledge that she had nodules on her thyroid, pronounced and alarming. I was trying to grasp the reality that this life of medical drama that I had hoped would subside, was going to require our vigilance and attention forever.

So, exactly 6 years ago tonight I was contemplating the overwhelming reality that my newfound breast cancer risk, which exceeded 85% on gene mutation alone, had been coupled with my 8 prior breast biopsies, and my mother’s “survivor” status, and had relegated my surgeon to tell me it was not “if,” but “when” breast cancer would strike me. When I met her for the first time a few weeks prior she had my chart with her. She had reviewed it before our consultation, and she cut right to the chase.

“When are we going to schedule your surgery?”

I paused, a little stunned and confused.

“For what?” I managed to ask.

“Prophylactic bilateral mastectomy.” She stated simply. “You will face breast cancer. The numbers, and your history make it irrefutable. I think we need to get there first.”

I always travel to my doctors alone, but that is probably one of the few times I actually regretted it. The room started to spin a bit. Thankfully, she didn’t skip a beat.

I managed to ask, “when?”

She said, “March 5th.”

I protested. I asked if we could do it over the summer. “I am a school teacher,” I told her.

She was kind, but unimpressed. “March 5th. My scheduler will help you coordinate with the plastic surgeon. We will be in the operating room together.”

I was numb. I called my husband, then my mother.

I drove home, and started to prepare.

I was unsure how I would handle the minimum 5 week recovery. There were no sick days left for me to pull from. I had an 8-year-old who had already had multiple surgeries, and I had quite a few myself. I started to wonder how to plan financially for a leave that would end up being at least partially unpaid.

A dear friend, who will never fully grasp the depth of the gift she gave, donated 25 sick days to me. The weight she lifted off me was astronomical.

I spent the next few weeks in auto pilot. We were still handling some new findings on Meghan, and I was reading and processing Cowden Syndrome. It made me nauseous.

I remember the drive into the city that morning. I remember walking with Felix. I remember praying over the phone with my brother-in-law.

I remember repeating over and over to the unbelieving doctors that I would NOT be having tissue expanders, the common course of action with a mastectomy. The plastic surgeon heard my concerns, and my need to simplify, and to get home without additional surgery. The knowledge that my child would likely one day walk this road filled me with a sense of urgency to make it seem as simple as possible. She agreed to do immediate implants. I lost count of the number of times I explained that.

I remember walking to the operating room, and looking into the comforting eyes of my surgeon before I fell asleep. “You are very brave.” And even though she never really gave me a choice, her reassuring smile helped so much.

I remember waking up feeling relieved and empowered. Not just because the surgery was over, but also because I had gotten out in front.

I remember seeing my husband, and checking on Meg. I remember seeing my sister and telling her she should be with my nephew. His birthday happens to be the same day.

I was discharged the next morning – about 28 hours after the surgery.

The next days were painful, and draining. My mom was with me for a few, to wash my hair, and to chat. I hated the circumstances but treasured the time with her.

After my mom’s mastectomy following her cancer diagnosis many years prior, she had dubbed the breasts “superfluous tissue.” I finally understood.

When my pathology came back days later with early grade DCIS, essentially one cm of stage 1 breast cancer, I missed my breasts even less. We were all surprised, and I was grateful for the knowledge that the cancer was not close to the chest wall and no follow-up treatment would be needed. I just had to heal.

I had no idea at the time that two months later I’d be back in the hospital for a hysterectomy. Cowden’s Syndrome does not mess around.

Except, it messed with the wrong family.

We get knocked down, but we get up stronger.

Sometimes I hate that I remember dates. Other times, maybe it gives me reason to celebrate, and to feel empowered.

I started owning my nutrition 6 years ago. I have worked on playing strong and fit. My weight has been stable, and I am proud to be one of the healthiest looking sick people you’ll ever meet.

“superfluous tissue” indeed.

#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

Time flies…

Published on February 25, 2018 by beatingcowdensLeave a comment

February Break. A time to refresh and renew. Mostly.

Except here. Here it’s a time to go as hard and fast as possible to get as many things done as possible.

Some of those things are Cowden’s related. Some are real-life related. Some are both.

Each could probably take a full entry or more.

But, for now, just in the last 10 days…

Last Thursday, was root canal 4 of 4. Ninety minutes in the chair for a nerve I don’t think is gone.

Friday I spent the morning at pre admission surgical testing for an upcoming vascular surgery. 6AM appointment. By the time I was leaving at 8, they had already begun to tell me I needed to find a primary care doctor to fill out “clearance papers.” A whole lot of nonsense about “comorbidities” with Cowden Syndrome. I felt like I had “cooties.”

Friday afternoon I went to two appointments with Meghan. Each left more questions.

While I was in the car the head of PAST (Pre Admission Testing) called to tell me without additional clearance, my surgery was cancelled.

Monday the dogs, both of them had all day trips to the vet. One had her teeth cleaned, and the other 22 staples in her side to remove a tumor that’s been there for almost 18 months.

Tuesday some work began in our basement- a long overdue upgrade to a leaking shower. It would take days, and my husband needed to stick around just in case.

Tuesday we went back to NYC to Meghan’s neurologist to have another brain MRI. Lesion is stable. The tumor board will review it on 2/28 – Rare Disease Day – and if all concur, she will have 6 month brain MRIs for at least 3 years. We talked a lot about headaches, and got a suggestion for a natural migraine relief I’m hopeful about. The head congestion persists despite “clear” sinuses and the headaches are relentless.

After I dropped her to swim, right from the city on Tuesday, I called my surgeon’s office to discuss what had gone wrong to cause the cancellation of my surgery. I was very surprised to hear things had rectified, in ways that confused me greatly, and I was no longer cancelled.

Having given up my ride, and anxious about the way things had been handled, I took an uneasy Uber trip to the hospital for my arrival time.

I should have been late. They were.

My 11:30 OR became 3:45, and the day was pretty much poorly done all around.

It’s over now – and truly is a long enough story if I tell it, it will need its own entry.

Thursday and Friday I did what I could to rest. Saturday was Silver Swimming Championships. In the Bronx. With a 6:30 AM arrival.

There was also a 2 hour line for a well-deserved sweatshirt. In my stockings. 3 days after vascular surgery.

We made it back to Staten Island in exactly enough time for her to change her clothes, brush her hair, and grab a sandwich on the way to theater. She’s begun working with a lovely group, SICTA, performing “Once Upon a Mattress” this spring. She made it in 10 minutes before rehearsal began and kept at it till I picked her up at 4:30.

Sunday was Saturday – take two. Minus the sweatshirt line, with the addition of some rain. In the dark. To the Bronx.

But, two days. Two events. Two best times. This is what makes it worth it.

And, I was home in time to get April to the vet for her newest ear infection. Felix was going to go, but the flex hose behind the dryer split…

And in 12 hours I’ll be on my second class of the day.

It should be easier than this. Today I’m wiped out.

I keep vowing to write more, and I keep failing.

#beatingcowdens

is exhausting.

Ice Cream for Dinner

Published on January 31, 2018January 31, 2018 by beatingcowdens2 Comments

You have to give the body what it needs. Tonight mine needs ice cream. With hot fudge.

Normally I’m a protein shake, green tea kind of gal. But I don’t really believe in drawing hard lines anywhere, because hey – you never know.

Today was day 3 of a seemingly impossible root canal. Our very capable dentist deemed it in the 5% of root canals he has to send out. That was after almost 90 minutes in his chair 2 weeks ago.

The root canal specialist looked at it and validated the dentist. She said he was right. It was going to be tough. That was just the consult.

Last Tuesday, and again tonight I spent an hour each time with my back lower left molar being attacked. My jaw hurts. My face aches. To hear it wasn’t finished was no fault of the dentist.

It was “odd,” “unusual,” and “the most difficult root I’ve faced in a while.”

Blah, Blah, Blah…

She has to talk to the dentist to decide the fate of my less than one year old crown. In my gut I’m not so sure the tooth will survive. Time will tell.

My girl, thankfully used Uber to get home from school, so that she could get the dogs ready. Lucky, our older dog had a consultation to consider surgery to remove a mass on her side. She’s 12.5, bloodwork to determine if she’s a candidate will be in Friday.

And that’s just the normal, happens to everyone stuff that has gone on this week. Is it really only Wednesday?

One day at a time I keep reminding myself.

We re-upped our commitment to Physical Therapy last night after a visit with the orthopedist last week. He voted for 12 more weeks for the shoulder tendonitis and the possible “plica” in the (formerly) GOOD left knee. Thank GOD for Dr. Jill. Without her knowledge, patience, humor, adaptability, passion and skill I have no idea where we’d be.

He also asked for an MRI of the left knee “just in case.” It’s on hold for now. We are literally in a point in life where we have to conserve scans.

The brain MRI is February 20th and that has to be priority.

January 17th we saw the adolescent gynecologist. She reorganized the hormones, and put in the order for an abdominal sonogram. Its time to check and make sure that uterus is behaving. As soon as we can get it on the calendar.

calendars

I sent a lengthy summary of 2017 to her geneticist asking that he reevaluate a few areas of concern. I sent the Email Sunday. By Monday I had been politely dismissed.

All my hopes rest with the pediatric endocrinologist. Appointment is 2/9. He’s gotten a few articles and knows I’ll be pleading for a trial of an alternative thyroid medicine.

I’m starting to lose faith in the medical professionals we see. And I had thought we’d conjured up a great team.

Cowden’s Syndrome is time-consuming and exhausting. It’s hard to see unless you’re in the middle of it.

And sometimes when you can see it every day – because you have to- you know that sometimes you need ice cream for dinner.

And that’s perfectly ok. I may even go add a glass of wine.

#beatingcowdens

You Might Have Cowden’s Syndrome if…

Published on November 15, 2017November 15, 2017 by beatingcowdens3 Comments

You might have Cowden’s Syndrome (or insert your chronic/rare illness here) if…

I spent some time alone last night.

That sounded a great deal nicer than it actually was. There was no manicure, no spa, and not even any wine.

Last night, after working, taking my daughter to her orthopedist on Long Island, and sitting in traffic home, I finally had to address the feeling that something large was sitting under the rib cage on my left side.

It was a process to arrive there- a mental game I played for about 12 hours. But, I got there.

You might have Cowden’s Syndrome if… you have ridiculously large “stable” lymphangiomas on your spleen that outsize the spleen itself. Because, hey, we grow things.

You might have Cowden’s Syndrome if… it occurs to you as you’re teaching that you are actually acutely aware of the previously mentioned spleen.

You might have Cowden’s Syndrome if… you then proceed to launch into a logical, rational series of scenarios, while completing your math lessons.

You might have Cowden’s Syndrome if… you know that the day may end with you in surgery, yet, you still make sure your daughter has the follow-up appointment she needs for the knee that has its own Cowden’s related issues.

You might have Cowden’s Syndrome if… you can carry on a conversation with your teenager through 90 minutes of traffic while simultaneously setting up your strategy… just in case you need your spleen removed.

You might have Cowden’s Syndrome if… you can get everyone settled at home and then sneak out to the “mall” (read Urgent Care) in hopes that a doctor will tell you your spleen is just fine.

You might have Cowden’s Syndrome if… while you are waiting for the doctor, you access the sonogram report from your last spleen scan in February. Scanning the spleen is a regular occurrence, so you have the “mychart” app open and ready.

You might have Cowden’s Syndrome if… you listen as the doctor tells you he’d like to get you to the Emergency Room “as soon as possible” to address the abdominal swelling and rule out a rupture. You thank him for his time, shake his hand, decline his offer for an ambulance because your gut tells you it’s not THAT bad, drive yourself home and figure out how you’re going to travel to a hospital where you could possibly handle surgery if you needed it.

You might have Cowden’s Syndrome if… you’ve been through enough atrocious hospitals to know when to stay local, and when you must travel… just in case.

You might have Cowden’s Syndrome if… you contact your job to let them know you’ll be absent the next day. Because, even if you don’t have surgery you’re sure it’ll be a late night. And then, as you hang up you start to wonder if you did the right thing. Because, sick days are hard to come by, and you can get by on little sleep, and maybe you should have waited till the morning.

You might have Cowden’s Syndrome if… you reassure your husband all is well, while helping your anxiety filled daughter get to sleep. All before you mention the need to get to the ER.

You might have Cowden’s Syndrome if… you can calmly text your husband what you’ll need for your bag, just before you’re sure your daughter is asleep. Then, explain to him that you’re driving yourself.

You might have Cowden’s Syndrome if… you can lovingly reassure, while starting to feel a little nervous inside, because, you do what you have to do.

You might have Cowden’s Syndrome if… you call a friend or two from the car, with your full on brave voice, just to pass the time.

You might have Cowden’s Syndrome if… you drive to the ER, park the car, tell the attendant in the garage you’re not quite sure when you’ll be back, call your husband to tell him where you put the parking receipt, and walk into the ER to check in.

You might have Cowden’s Syndrome if… you don’t even have to provide an insurance card because your information is so active in the computer.

You might have Cowden’s Syndrome if… the triage nurse says “What?” three times as she takes your blood pressure and asks about your medical history.

You might have Cowden’s Syndrome if… you can watch the attending from your “bed” in the crowded hallway “Google” Cowden’s Syndrome before she comes over to you.

You might have Cowden’s Syndrome if… you have to catch yourself from acting like a know-it-all when that same attending speaks as if she studied Cowden’s extensively, and tells you “spleenic lymphangiomas are not a common presentation of Cowden’s Syndrome.” You just nod instead of asking “Exactly how many patients have you ever met with this syndrome?”

You might have Cowden’s Syndrome if… you take a picture of your IV once it’s in. Because that’s a thing in our family. No, it’s an actual thing… really.

You might have Cowden’s Syndrome if… you check your “mychart” app so regularly, you know to the minute when they are coming to take you for the CT Scan because it is in as an “appointment.”

You might have Cowden’s Syndrome if…you can wait better than most people. You can settle into your “chairbed” in the hall, while people are ill and vomiting, and you’d rather be anywhere but there, and you can keep your blood pressure and heart rate calm.

You might have Cowden’s Syndrome if…you view the “registration” people as vipers traveling through the corridors with iPads, getting sick and out of sorts people to sign away. It’s about the money and the bills that will follow you for months anyway. And you can actually see snakes while you look at them, even if it’s not who they are because you are so furious that they regularly delay people’s requests for help until they sign “this last form.”

You might have Cowden’s Syndrome if… you knew to pack two battery chargers for your phone, a t-shirt, and a bottle of water. The bare necessities in a hall where there was no one to attend to you and no plugs.

You might have Cowden’s Syndrome if… you can resign yourself to drinking a full container of lethal tasting contrast dye while ordering yourself new sneakers on amazon, and a few gold bars for “Candy Crush Soda Saga,” because, hey…it’s the little things.

You might have Cowden’s Syndrome if…the attending who ‘googled’ you hours before, is fully perplexed at your visibly swollen and tender spleen and your negative lab results. So she says, “That’s not what I expected. It’s good, but unusual…” And you laugh to yourself. Hard. In your brain of course.

You might have Cowden’s Syndrome if… when the CT results come back as “multiple stable hypodense spleenic lesions” and that same attending says, “you should follow-up with your primary doctor tomorrow,” you smile in your head again. You know this means the spleen is safe for now. You know this means no emergency surgery. You also know you already explained you DON’T HAVE a primary doctor, because seeing a million specialists means sometimes you lose track of what “routine” means. Plus, no one is too interested in being your (or your daughter’s) case manager because “rare disease” is high risk. But, you take your walking papers because tonight your spleen won’t rupture. And, hey, it’s the little things.

You might have Cowden’s Syndrome if…before you sign your discharge they mention an “incidental finding” of some spinal deterioration that you should “probably point out to your primary doctor,” and you can’t quite stifle the laugh that time, as you are reminded about taking the used car to the mechanic… and the fact that no one is really listening to you anyway.

You might have Cowden’s Syndrome if… you can see the vipers slithering around as you gather yourself, stretch your side that feels exactly as it did when you walked in, and navigate your way out.

You might have Cowden’s Syndrome if…you wake the parking garage attendant at 2:30 AM and retrieve your car. You head home relieved, grateful, and overwhelmed.

You might have Cowden’s Syndrome if… you actually contemplate heading to work in 4 hours to save the sick day, but think better of it. You plan the morning with your husband, text your daughter her directions, remove all traces of the hospital from your body and slide into your bed.

You might have Cowden’s Syndrome if… it takes you a few minutes to settle as you contemplate your “night out” and you wonder if a night out will ever again include fun, friends, and wine.

You might have Cowden’s Syndrome if…you think about the number of times you and your daughter have been to the hospital courtesy of this syndrome, and you wonder how many more there will be.

You might have Cowden’s Syndrome if… you want to get mad. Really mad. But, you can’t. Because after all, you get a warning system. You get to check it, scan it, and test it, BEFORE it ruptures, and BEFORE it spreads. You know how tired you are, and how sick of it you are, but you also know how fortunate you are, and how SO MANY people would actually give anything for that warning system.

You might have Cowden’s Syndrome if… you miss your friends, but you know there will be time again. Eventually. And in your heart you know they are all there. You miss socializing, ever. You wish a night out wasn’t bridge and tunnel tolls and a parking garage at a hospital.

You might have Cowden’s Syndrome if…you are not quite sure you have the physical or emotional strength, or hours in a day, to get through the next few weeks. Yet, you strengthen your resolve and readjust your mind into tiny, manageable chunks.

You might have Cowden’s Syndrome if… you spend way too many hours calculating and reforming your strategy to remain grateful and

#beatingcowdens

Invisible Illness – Sometimes We ALL Need Help

Published on October 21, 2017 by beatingcowdens7 Comments

The day starts with me laying in my bed, trying to wrap my mind around the fact that it is time to face another day. I lay there a few moments. My heart rate begins to rise. I feel the familiar ache and throb in my legs, and I quickly calculate the number of hours until I can re-visit my bed.

On the days I can move fast enough, I take a quick shower before I undertake the 10-15 minute process of waking Meghan. Please, save the judgment that she is 14 and should be waking herself. You’re right. Except by the time I get to the top of the stairs there are several alarms sounding simultaneously. She would if she could.

Waking her is no easy task. Her body, so deeply fatigued by her daily physical and emotional battles, resists breaking those last few moments of cherished rest. Never enough. All teens are tired. I get it. I don’t know for sure that YOU get looking into the eyes of a 14 year old, bright, compassionate, articulate, and full of promise, as she pleads for it not to be morning.

The two of us together are some pair in the early hours. My body aches but by the time I get through the shower I can usually shake some off. I am also 30 years her senior, so living in my mid-forties, I can expect some normal aches to start to take hold.

Like so many things, Meghan’s life is mine amped up. I was always tired, but didn’t know “train wreck tired” till the attempts to balance my thyroid in my mid-twenties.

She was 10 when that journey began. It is not right yet, although a competent, sensitive endocrinologist watches closely. Synthetic anything gives her body a problem. Always has.

Adding in the synthetic hormones to contend with the suspected start of endometriosis has added a layer we need, but didn’t want. The pre-cancerous tissue in the uterus is likely to be helped by this step, as well as excruciatingly painful periods, but like all things it is not without cost.

She drags her body down the stairs, walking crookedly to contend with a back, or a hip, inevitably and almost constantly displaced by a full foot size discrepancy. Bi-monthly chiropractic visits put things back in place, for as long as they last on her 5’8″ frame.

As she travels the two flights down to her bathroom, there is an internal, and audible triage of the aches of the day being sorted. It’s agonizing to watch and listen to. You see there is never a day where everything feels well. There is never a day where she is just tired. There is never a day that she wakes eager to face even the most exciting events.

There is a part of me, a small quiet part of me, that sometimes allows myself to believe that maybe she’s playing games, exaggerating, or trying to make me insane. And then I think quite simply, why?

Why would she WANT to hurt, or have an upset stomach, or be in pain. She, who is eager to please her parents, and everyone she meets, would not want to be in internal turmoil or conjure up ailments.

So my mind does it’s thing as well. “How many days has that been bothering her?” “Do I need to take her to a doctor?” “Can they really help anyway?” “Is anything lasting too long?” And so on…

And somewhere in the middle of this, as the moments kick past 6, I have to push. We have to be out the door in order for her to be at her 7:25 period 1, and for me to be in my classroom in time to set up for my 8AM students. There is really no time to deal with any of it. We simply need to press through and get out of the house.

We do a lot the night before. Lunch is packed, swim bags are packed, clothes are picked out. Homework is always in the backpack. Mornings are not for things that can be avoided.

I have to admit there are mornings where it has gone very wrong. There have been mornings where I have not felt well myself, and my patience with the multitude of issues required to just get herself dressed and ready are forgotten temporarily. I am not proud of the mornings where the clock passes the point of panic and I evolve into a screaming shrew. But, this is about honesty, and honestly, it happens.

Smooth or not, we find ourselves in the car on the close to 20 minute ride to her school. And that is where it gets trickiest.

Months ago Meghan was diagnosed with PTSD – Post Traumatic Stress Disorder, secondary to medical trauma she has endured in her young life. That PTSD has been exacerbated through the years through a variety of triggers she works to manage. But, many days it seems her “fight or flight” is broken and she is wound into a high state of awareness, of EVERYTHING. That means every human interaction, every test, every assignment, every competition, every audition is just amped up. Sometimes the volume is so loud it can feel almost crippling.

And, yet still, as we work daily, she has to get out of my car and walk into that building alone. Some days are easier than others. Some days, I’m tempted to snatch her and drive far away where I can keep her safe and calm. But, she’s not 4 – she’s 14. And, she has to go. She knows it too. So she does.

It’s not about the people anymore. Although it was for a few years. Now, thankfully, it’s not. The people are kind. They students are friendly, and while no one is friends with everyone, she is after only about 20 days, building positive relationships with peers, her swim team, and many adults.

So why? I’m not sure. And I’m not totally sure she is either. That’s why we’re working on it.

But, there are theories.

Post Traumatic Stress Disorder is not rare. But, Cowden’s Syndrome is. And in my child the two are intermingled. The relationship between chronic medical issues, 18 surgeries, tests, scans, hospitals, isolation, heightened anxiety, the need to self-advocate, a lack of trust for the many medical professionals who have handled things wrong, and the isolation and overwhelming feelings this can cause is just the tip. Coupled with generally feeling off, having a super sensitive stomach, relentless seasonal allergies, and being an athlete who simultaneously loves her teams and fears competition can create consternation. This is the very tip of what I know to be a Titanic sized iceberg we are working on melting.

She likes her school. She likes the people. She likes the environment. And yet there are days it is a struggle, a moment by moment struggle to make it. She hurts. She pushes. She is stubborn. She is strong-willed. And for as many times as those characteristics cause me to want to bang my head repeatedly against a brick wall, are as many times as I thank God she is that way.

She likes to swim too. She likes to swim for her school. She likes to swim for her 12 month team. She enjoys feeling strong, and having a body that reflects her hours of training. I am grateful that she is an athlete. But, the battle to get into the pool when every piece of you just hurts, and you want nothing more than to be in your bed is a battle her coaches or her teammates do not fully see. I mean they see the performance anxiety, which is WAY deeper than what it seems to be, but the rest, the full deal is carefully and intricately hidden like so much else. No wonder she is tired.

We are working on it.

Every day is a battle to get through the day. Sometimes physically, and other times mentally and emotionally. Yet, day after day, it gets done with a grace that often blows me away.

Every house holds secrets. Private, messy moments that are not shared with the world. We are not the only ones, and we are not oblivious to the moments others must hold close to themselves.

Collectively, we all need to stop judging. We must stop imagining their life is perfect because it looks so on facebook, or instagram, or snapchat. We need to be kind. We need to go back to the basic rule that “If you have nothing nice to say – don’t say anything at all.”

We need to not profess that we can fix others problems, or make ourselves feel better by offering “quick” solutions. It is hard to watch others in pain. It is not easy to accept that sometimes there is nothing we can do besides be a friend. We need to acknowledge pain, and struggle as real without giving in.

In this house weekends are still about survival. They are about recovery. They are about storing up a ‘spoon’ or two so that we can use them in the coming week.

One day I’d like us to have a social calendar. I’d like to get out as a family and make some memories on a sunny October day. But, today was not that day. Today was swim practice and vocal lessons. That is what we could do. Today.

The evening winds down and we are faced with the reality that sleep will need to happen again. Sleep is tough times. Not for lack of fatigue, but for a teenagers over worked mind. We are working out a system. We are seeing some progress. The struggle is real.

We are working on it.

This week we contracted with a company for a Service Dog to assist with the PTSD. It will be one of many interventions we will use. We have sent a deposit. The process has begun and can take up to a year. We are hoping it will be sooner.

If you have read this far, and you have real suggestions for grants we can apply for to assist in raising the cost of this dog, your assistance is valuable.

We are not looking for an analysis, or reasons why we Meghan might NOT need a Service Dog. We have medical professionals encouraging this. We will deal with logistics as the dog’s arrival looms. In the mean time, we are working purely on fundraising.

The organization we are connected to is http://www.medicalmutts.com They are an accredited business that we researched extensively. When the dog is ready we will need to spend a week in Indiana picking it up.

The decision to make this move was based on many factors, but it was guided by Meghan. She has researched. She has thought. She has read. Her father and I have learned to trust her instincts. Undoubtedly, that is one of the reasons we have come so far.

Looking forward to hearing your encouraging, helpful comments –

We remain