What if it all works out?

Published on July 10, 2022July 11, 2022 by beatingcowdens2 Comments

What if?

That is hands down my least favorite question. It is one that puts my head in places I’d rather it not go. I believe very much that a positive mindset can have a positive impact on your mental and physical health. Do not ever confuse that with the Toxic Positivity that I ABHOR. They are not one in the same. That being said, my trips to dark mental places typically begin with “What if…?”

So of late, I’ve presented myself with the challenge of “What if it all works out?”

When I last wrote Meghan was in the recovery phase of a layered procedure to address a precariously placed vascular malformation in her upper thigh. And, while she is not pain-free, the crippling nerve pain that had started to occupy every hour of every day has faded to black. This pain is different. And maybe for those who have not lived her life, it would be too much. But anything is better than that nerve pain. Anything. She will have an MRI/MRA to check the status of the surgical site in August.

She has been fully weaned off the Lyrica, a drug that was doing its job on the pain but doing an ugly number on her physical and mental well-being. Her thyroid meds have been raised. The muscle relaxant is much lower. And she is starting to have some mental clarity back. She has begun walking, a few miles at a time to get her physical strength back and to give some muscle back to the leg that was just too painful to do much with.

She set a goal. She wants to run a 5K. To some that may not seem like a big deal, but this girl was told at the age of 8 that she could not run. At all. She had to quit soccer. She had to drop dance. She could not join track even though she longed to run. She landed in the pool because it was all she had left. For her, it is an epic goal. This week she got the blessing of her orthopedist to go for it. Slowly. She is hoping to be ready this fall.

What if it all works out?

Don’t worry. We are not delusional. We know the long and windy road will continue before us forever. We know that we often have to pause at the rest stations along the way. We even know that sometimes we have to pause at DIFFERENT rest stations, because she is not me, and I am not her, and we each handle the struggles that come at us differently.

We have not forgotten about this, which we will carry forever.

But, what if it all works out?

I am overwhelmed by appointments on the regular. I am sometimes downright angry that so much of our life is punctuated by traffic and travel. Not to beaches or parties, but to doctors and hospitals. I am sometimes totally twisted that there seems to be no time to breathe and that “regular people” appointments, job issues, car trouble, and nonsense seem to come at us like sideways hail in a storm where the umbrella is inside out and useless. I hide from those I love, unable to repeat the same story over and over like an old and worn record.

But I listen. And I hear. I remember. I know of sick parents and terminal illnesses. I know of cancer battles, aging struggles, and injuries. I pray for families whose children are frighteningly ill. And my heart aches for friends who have buried their children.

What if it all works out?

There is a chance. There is always a chance. That we will screen and scan and bob and weave the worst of what Cowden Syndrome has to offer. My girl, despite her obstacles, has an impressive GPA, a relationship where they treat each other with incredible respect, a career path on the horizon, and life goals to make this world a better place.

What if it all works out?

This week we had appointments two days in a row. 35 miles, roughly 2-2.5 hours each way to Long Island. One was to her favorite orthopedist who never leads us wrong. He wants hand therapy for the healing fractured scaphoid (just “regular stuff” finding its way…) if we can manage it. And, he wants to see her again before school starts in August.

The next day we went to see a Pediatric Rehabilitation and Medicine doctor. We met him as part of the “new team” in December and he was brought on to address issues of pain. In December we could not change anything about the pain management as the goal had to be to survive until the procedure in May.

However, we were both intrigued enough to want to hear what he had to say when things settled a bit. Literally the only opening the entire summer was a 2:30 on 7/7. We arrived after a ridiculous drive and he did not disappoint. In this day and age, a doctor who is covered by insurance and takes an hour or more with you while LISTENING is unheard of.

More miraculous for us, is when issues of chronic pain and a generally overloaded sensory system were brought up, they were met with concrete medical validation, complete with images of the brains of patients with similar struggles. He met Meghan where she was and had a thorough discussion with her, appreciating that she had enough knowledge after a grueling year in Anatomy and Physiology to talk to her on her level.

What if it all works out?

It’s tough to be a teenager. It is exponentially tougher to be a teen whose life is filled with so much pain and medical drama. It is the worst to be a teen when you have lived through and endured more than most adults, and those same adults discount your reality, your pain, and your experiences. It is rare and refreshing when a doctor does not. Apparently, there are a few on Long Island that are worth the Belt Parkway.

He was able to validate what she knew. That she can FEEL everything in her body with abnormal acuity. But he didn’t throw a drug at her, he took notes and kept her talking. Then, when he had a suggestion for a medication to trade out, not add on, and potentially eliminate two and add one, he still wasn’t done. I’m not sure which one of us brought up her purple feet as she had been sitting in sandals for almost an hour on an exam table, but that sparked another conversation. I listened as he asked questions on a list I had been checking off for years. I smiled behind my mask, not because I was glad about what he was going to say, but because it made sense and he was LISTENING.

This is the same doctor who questioned her diagnosis of Hypermobile Ehlers Danlos because it did not feel quite right to him. After a lengthy conversation including all the right questions, and some heart rate checks he said “POTS.”

Postural Orthostatic Tachycardia Syndrome, brought so much clarity for her. Especially in the middle of a week-long hardcore battle with her stomach.

And finally, there was potentially explained everything from her heat intolerance to the painfully twitchy foot that sometimes drives her mad, and everything in between.

What if it all works out?

Why am I not flipped out by this? Because nothing changed. All the symptoms she was having in the office on Thursday have been with her in varying degrees for her whole life. And, truth be told, many I recognized in myself. All that happens with a diagnosis, a label, if you take it for what it is, is that you are validated. Finally. And in this life, it matters. And maybe from this, and switching a few medications around and changing a few things, she will be able to go even further, and do EVEN MORE.

Doctors who work with you, teach you to maximize what your body CAN do. And since Cowden Syndrome is not a disease for the faint of heart, we need all the strength we can get to keep moving forward. Our doctors are mostly a “guide on the side.” They are there to provide scans, medication, and sometimes procedures. But, mostly they are who we need to teach us how to maximize our lives in these bodies. They are to help us never feel weak, less than, or incapable. When they do their jobs right they are to explain and empower.

Meghan has her first GI screen this week. On Tuesday there will be a colonoscopy/endoscopy baseline. It comes at a good time because that stomach has been in a FOUL mood this last week. And we are hopeful that it shows, as GiGi used to say, “A whole lot of nothing!” And then, maybe we will take a break for a week or so and put the doctors on pause.

For today, I come to you from a place of “What if it all works out?” A place of gratitude, grace, and grit.

I am a messy hair, no make-up, living on grace, making-it-up-as-I-go-along loner. I am not ignoring you. I am busy seeking joy on the Belt Parkway and the BQE, and believe me when I tell you, that is a full-time job!

#beatingcowdens

Matching shirts and car selfies. “Vacation” 2022

Forced Pause…

Published on September 16, 2019 by beatingcowdens1 Comment

My sister had a series of hamsters when we grew up. I don’t remember how many. I actually don’t remember much besides the smell of the cage, and the wheel they used to run in. They never seemed to tire of it, and each spent long periods of their day there. Maybe it’s because they were caged with few other options. Maybe they didn’t know any better.

Regardless, I’ve thought about those hamsters a lot lately.

I feel very much like we live on the wheel. Every day is centered around executing a well-oiled machine where an insane amount of activities, assignments, and appointments fit into a tiny window. So at an early hour we hop into the wheel in a sense, and we run all day.

When you’re in the wheel you may think about nothing except for the next task. Or you may wonder if there is a better way to get through the day. You may long for a break from the routine and the schedule. You may wonder what you’d do if…

We are chronically busy. Sometimes out of necessity and sometimes by design. Sometimes, in the case of those of us with chronic illness it is a little of both.

In my house we are busily maintaining health, through frequent appointments and therapies. We are also busy trying to fit a regular life around it. There is constant motion.

Until there isn’t.

I spent so many moments wishing I could take things a little slower. I wished I could have some time, for a full nights sleep, to clean my house the way I want it, to visit with friends, to take long walks, and…

And now I’m here.

A January foot injury at work has morphed into a monster that refuses to heal. Stress and strain and alternate gait patterns protecting the original injury continue to set the healing process in the wrong direction. A stress fracture of the cuboid bone continued to worsen. It’s now my first official “fracture.”

It is time for me to pause.

This time there is no rushing out of the boot. There is no making believe its all ok. There is waiting. Resting. Minimal weight bearing. There will be additional imaging to clear the healing before I head to physical therapy. There are only very short car trips to doctor’s appointments and to transport my girl.

I am here. In my house. Alone.

And it sounded to heavenly when I was dreaming about it in the middle of the chaos of the day to day.

Now it sounds a lot like the tick-tock of the clock hanging over my head.

It feels a lot different when I have to let someone else teach my students.

It is not as productive as I’d hoped, since all the cleaning and sorting and organizing I promised myself if I ever had time is currently off limits with the whole restricted movement thing.

It is a battle not to let my head overthrow me with its worry about “real” Cowden’s issues that may at any point smack us in the face. It is tough not to think about the backlog of surgeries that will come, but have now been placed in triage.

And yet I have to make a choice.

There was a very inspirational GoalCast in my Facebook feed this morning.

Claire Wineland Dies at 21 and Leaves Beautiful Message

And I’d encourage you to watch it if you have a moment.

Her life was way more challenging than mine. Yet she made a choice that I still struggle with sometimes.

These last few months without the proper use of my feet have often left me battling depression. I do not have it all together, or have an inspirational message as this young woman left behind in her short time on earth.

What I do know is if I choose to wallow in this I will miss the “pause” that has been placed in front of me.

Instead I will make the conscious choice to make what I can do, more fulfilling.

I am going to try to write a lot more. I am going to have some people visit. I am going to handle a few “sitting down projects” that are in my path. I am going to open the windows and appreciate the fall weather even if I can’t walk in it this year.

I’m going to look at my orchids, and their beauty and crazy, stubborn irregularities that make them magical for me.

I am giving small pieces of my life back to reflectiveness and prayer and simple mindfulness.

Someone took the wheel out of my cage.

For however long it’s gone, it’s on me to decide how to view it.

If you take the time to watch the link above you’ll understand when I say today I am looking to add some lights and a few throw pillows.

This is not easy. If you’re reading this you likely go through hard things too.

I am a work in progress. Thankfully God’s not finished with me yet.

I’ll be here with my feet up.

This too will pass eventually.

#beatingcowdens

Normal People Stuff

Published on March 28, 2019 by beatingcowdens1 Comment

Two weeks of as much rest as I can possibly stand.

The trouble with having a rare disease, as I’ve said so many times before, is that you ALSO have real life. You ALSO have “normal people stuff.”

After that early January fall, I was quite consumed with my shoulder, and pretty bothered by the flippant attitude of my breast surgeon. All of which still stew inside of me as the real possibilities of breast implant associated illnesses are all over the news this week.

Just one of the many stories this week outlining a possibility. That’s where it begins. With someone saying it “could” be.

And then there was the new endocrinologist on March 12th. It was a backwards progression of sorts. A referral from the surgeon who has been following me since my PTEN diagnosis. I never really settled into a new endocrinologist after I disagreed with my long standing one in 1998. He was bothered by my questions. I bounced in and out of a few. I found them mostly arrogant and out of touch. I held with one during my pregnancy in 2003, but ditched him soon after my C-section. I had a primary running bloodwork, and I was guiding treatment based on my labs until the Cowden’s Syndrome surfaced.

At that point I was handed off to an endocrine surgeon. The possibility that the half of my thyroid which remained after a partial thryoidectomy in 1993 could fall into the 35% lifetime risk of thyroid cancer that comes along with a PTEN mutation was real. We agreed on annual follow-ups using the ultrasound in her office. All was smooth until February 26th, when she saw some calcifications on the ultrasound. She got spooked and wanted a “fresh pair of eyes.” She referred me to an endocrinologist in her hospital.

He sent me for a “proper” ultrasound before my appointment. He then, with some promising knowledge of what a “Cowden’s” thyroid looks like, went through the images from the exam. He told me that there were some potentially concerning features, but nothing that appeared urgent. He questioned why I had not been using the formal ultrasound at the hospital, as there was now no baseline to compare it to. In another episode of wondering why I don’t ask enough questions about my own care, I had to let it pass…

He told me the radiologist would read the ultrasound with more concern than he did. He was right. So there will be another ultrasound in August. We’ll talk about the status of that right thyroid lobe then. In the mean time he offered me a change of medication that in 30 years on Synthroid no doctor has ever entertained. Monday I will begin a lower dose of Synthroid combined with a twice a day dose of T3, liothyronine, in hopes that I might get some of my sought after energy back. With a standing order every 3 weeks to monitor blood levels, at this point, I have nothing to lose.

So back in circle to the “normal people stuff” intertwined in this balancing act. April 18th is still the earliest day to contend with the chronic ear pain and fluid I’ve been handling since September. It doesn’t matter that it has headed into my mouth and is bothering my teeth. That it is somehow messing with the nerves so badly that I ended up with a root canal specialist yesterday. Of course, she won’t touch the painful tooth because no one can know exactly what is in my ear. Pain management. Maybe it’s Cowden’s. Maybe it’s allergies. Maybe it’s simple. Maybe it isn’t.

And then there is that foot. Snagged on a kids chair in a third grade classroom in the middle of teaching a lesson. It knocked me on the floor. I was so worried about the shoulder, and the breast implant that I ignored the foot. At least I tried to.

About 2 weeks after the fall I saw my primary and asked for help. She suggested an MRI. GHI promptly denied the MRI and told me to ice and elevate as much as I could, and reevaluate in 6 weeks. I was left with no choice but to continue a job that kept me more hours on my feet than off. By March 6th I couldn’t take the pain anymore and headed to a podiatrist. He evaluated the foot, ordered Xrays, and got them read within hours. By the next day he had the MRI approved and I went in for the exam. About 72 hours later I got a call asking me to come in to discuss the results.

That’s never an actual good sign.

So when I walked into the office in two sneakers, I kind of suspected that I wasn’t going to leave in both of them. And I was right.

MRI revealed a partial tear of the lisfranc ligament in the left foot. Apparently this is an incredibly rare injury, (insert shock and surprise here) that the podiatrist anticipated before the MRI. Apparently you can only get this injury through a twist and fall, you know, like catching it on a student’s chair mid-step.

I got a soft cast, and a giant walking book. I got pulled out of work for at least two weeks, with no idea when the good people who review these cases will approve this as the clear work-related injury it is.

I have another appointment with the podiatrist tomorrow.

There is State testing at work this week. I’m always there for testing.

But right now I’m actually testing my inner strength. Resting my foot.

I’m preparing for my clearance to return to work. I’m preparing for my ENT appointment. I am preparing to get my ear fixed. I am preparing to get ready to lose the other half of my thryoid. I am preparing for another plastics consult…

And all the preparing in the world won’t matter. Because life will come in the order it wants. That is the lesson for Cowden’s Syndrome and real life…

The dog hair and I will be here until then….

#beatingcowdens

It’s This Day to Day Living…

Published on February 28, 2019February 28, 2019 by beatingcowdens3 Comments

And that might be an accurate description of my current assessment of living with Cowden’s Syndrome.

It’s so hard to put into words. Those who don’t understand are likely to think I’m insane.

When you know your mission, you carry it out. You are driven. Focused. There is something that needs to be accomplished, or an adversary beaten. You have a crystal clear goal.

As difficult as those moments have been, I am starting to find the ‘forever’ aspect of this syndrome to be overbearing at times.

Some days it seems no matter which hurdle we clear, something else is in the line of fire.

I waffle between doctors who are either not interested, or are so overworked that they lack the time, energy, or desire to research and think from the alternate view required for a 1 in 200,000 mutation on the PTEN (tumor suppressor) gene.

Research. Real research (yes, I am smart on the internet and know what to read and what to brush off,) is surfacing so often that it is hard for me to even keep up. I don’t expect my doctors to be on top of it.

I expect them to treat me as a partner in my own care.

They have gone to medical school. I have not. However I have more extensively studied Cowden’s Syndrome than they ever will. And I still have a great deal to learn.

Gone are the days when “doctor knows best,” and I should comply without question or explanation. This is my life. This is my daughter’s life. And wherever I can assist, I intend for those lives to be long and strong – physically, mentally and emotionally.

Tuesday the 26th was my “doctor day.” It became a necessity years ago that I take a personal day and “stack” my annual appointments. This makes the day out of work worth it. Some years things are smooth. Other years, well… not so much.

After a fall at work in January, where my 5 foot 7 frame ever so gracefully landed on my right shoulder and implant, I have been uncomfortable. The implant that was previously easy to ignore was prevalent in my thoughts all day. It is not ruptured, and I was able to get MRI confirmation of that. However it is just annoying. It sits slightly off place, a constant reminder to my brain and body that it is THERE. I am grateful it is not painful. I am not content to live with this situation indefinitely.

My discomfort, and the knowledgeable people I share some Facebook support groups with, let me down a path of research on silicone implants.

I learned a whole bunch of things. Most of those things are probably inconsequential in my life, but they made me angry. I had double mastectomy with immediate implants in 2012. In 2016 the implants needed to be replaced way ahead of schedule. (With a maximum of about 10 years on average). I had one breast surgeon and two plastic surgeons.

No one spoke to me about a condition called BIA-ALCL (breast implant associated anaplastic large cell lymphoma). The risk is minimal, but it exists. No one ever talked to me about it and allowed me to make an informed decision. We have a rare disorder that predisposes us to greater cancer risk. No one has thoroughly studied the occurrence of BIA-ALCL, and certainly no one has considered it in relation to PTEN Mutations. No one knows. But, I deserve the uncertainty discussed.

Further down the same page is the screening recommendation that women are screened via MRI for silent rupture 3 years after the first implants, and every 2 years following.

Not a word. Ever.

https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm338144.htm

There are other pages. Solid articles. But if you read the above link you get the point.

So I saw my breast surgeon first. All was good on exam. That was a relief. I began a discussion about the above, and was really upset by her flippant response. I was told I was reading too much on the internet. I was told that there was no conversation about possibly removing my implants. Granted this is not something I was ready to do tomorrow, but it was something I wanted to learn about. I was told I would be subjecting myself to unnecessary surgery and she would counsel my plastic surgeon against even entertaining it.

I honestly felt like I had been hit.

I asked her what her thoughts were on BIA-ALCL related to Cowden’s Syndrome. She had no answer. I asked her how many PTEN patients she sees. 20? No 10? No 5? No, less than 5.

I asked about screening MRIs. I was told they were “unnecessary”. I referred her to the above link.

I could not believe that I sat in the middle of a major cancer center in New York City. I felt violated and angry.

Next came my oncologist.

She is a kind woman with very few answers or helpful tips on risk management. She pretty much looked up Cowden’s and checked that I have no breasts, no uterus, and half a thyroid, so I should be easy to manage. I asked her questions about bone density,and heart health, (30 years of thyroid replacement, 7 years into forced menopause) and she simply said, “I don’t know.” I asked about the lymphangiomas on my spleen that currently outsize the spleen itself. She started to talk to me about spleenic “cysts” but I drew her back to lymphangiomas and the vascular component that often affects PTEN Patients. I have not desire to lose my spleen, nor do I have a desire to harbor a potentially destructive organ. We settled on a bone density and an abdominal sonogram to measure the lymphangiomas. At least this makes sense to me.

Off to the otolaryngologist with a hopefully not PTEN problem. He did vocal cord surgery for me 2 years ago to remove some growths. This day the vocal cords were clear. The right ear however has been an issue since September. I spent a bit of time treating for migraine, and blaming the chlorinated pool spectator sections. I had 4 doctors prescribe antibiotics when they saw fluid in my ear, and another a short course of steroid. All cautioned me about hearing loss. I regained my sanity to some extent when a friend gave me Mucinex sinus max. Something about it helped the pressure. The doctor got a look in my ear and used his camera to show me the fluid inside the right ear that is not draining. He also looked deep in the ears and told me something was “off” with the ear canal. But that was as far as he would or could go. He gave me the name of a doctor to treat me. He also told me to get a hearing test, and to understand that they must find a cause prior to any treatment. April 18th was the first I could get. Mucinex for all till then.

The endocrine surgeon came into my world post diagnosis in early 2012. I believe her function was to evaluate regularly the remaining 1/2 thyroid, as thyroid is one of the greatest PTEN related cancer risks. My thyroid was partially removed in 1993 due to a diagnosis of “multi nodular goiter.” At the time, the prevailing wisdom was to leave one of the lobes intact and suppress it with high doses of synthroid, keeping the TSH (Thyroid Stimulating Hormone) low. For years I operated with a lower than normal TSH, but it worked for me and seemed to keep the remaining tissue quiet.

When I was diagnosed and my team changed, so did some of the management theories. This endocrine surgeon, who was only managing my medication as a courtesy, not as a regular practice, preferred a slightly higher TSH level. We jousted a few times about fatigue, and other side effects that come with adjustment. We had made peace on a split dose, until I had my levels measured in January and they were WAY to high for my physical comfort zone. After my initial glee that I was not totally losing my mind, and that I needed medication, I started to wonder why the level change. My weight was consistent…. my activity level consistent…

She did a routine sonogram of my neck in the office. For the first time in 7 years she paused. “There are small calcifications. They were not there before.”

I asked about a biopsy and she told me she would not even know what to biopsy. She’d be “guessing” as the thyroid bed is undefined. She said she wanted me to consult with a colleague who is an endocrinologist well versed in molecular genetics. She told me it was no rush. She was going to Email his staff, and I could reach out when I have a school break in April.

That was Tuesday afternoon.

Wednesday morning I received a call that it was suggested I book the first available appointment. I did so for March 12th.

I was told to obtain an ultrasound for basis at a local facility.

Thursday morning the phone rang again directing me to get the ultrasound at the hospital before I see the doctor.

Things seem to have moved from very casual, to lets not dawdle, quite quickly.

I’m not emotionally attached to too many non-essential organs anymore. I’m vested in getting anything out before it causes me trouble.

Life is a juggling act.

I have plans.

Doctors appointments get in the way.

I know people who use sick days to vacation. I use mine on the Gowanus Expressway.

I want to get it together, and see people. I want to have casual conversations and catch up on people’s lives.

I will. One day.

But for now the energy remains focused on a kind, lovely, compassionate teen, and keeping these two “Rare” ladies in their best health.

Oh, and that fall in January left me with a pain in my right foot that just won’t quit…

Tick tock… the waiting continues…

And we remain forever

#beatingcowdens

It’s Complicated…

Published on April 18, 2017 by beatingcowdensLeave a comment

I was in the stairwell close to the 5th floor of the nursing home where my grandmother resides when the phone rang. I paused, startled by the ring, and trying to suppress my slightly out of shape panting before I acknowledged the call clearly coming from the medical office we had visited earlier that day.

It was Tuesday the 11th. “Spring Break” had begun Saturday the 8th. Early that Saturday morning I had left on a road trip alone to the Marine Corps Base in Quantico where I had the privilege of watching a Marine who served with my Dad receive the Bronze Star with Valor – almost 50 years after the day it was earned. It was a whirlwind trip – 5 hours down that morning, and a busy, fun, emotional day that lasted well past midnight. I returned to Staten Island by 12:30 PM Sunday, in time to catch Meghan’s 1 PM Swim meet. Felix took “off” the workweek and spent Monday and Tuesday overseeing the installation of air conditioning in our house. It was 24 hours well spent – 12 each day- but the inevitable trail of dust and dirt needed to be tended to as well. So, I had headed to this appointment alone with Meghan earlier in the day. Now I was trying to visit with Grandma, although she’s often unsure I was ever there… I still know.

I took a deep breath before I answered.

A lovely young woman, whose cheery voice caused me to immediately forget her name asked, “Is this Meghan’s mother?” That is my favorite title- depending on whose asking. I tried my best to muster and equally cheery, “Yes, it is.”

“Oh, good. I was asked to set up Meghan’s surgical date.”

Sigh, Even though I knew the call was coming – it doesn’t get easier. I also knew I had very specific directions from Meghan that I was to “get it done as fast as possible.”

“How soon can we do this?” I asked.

“My first available is May 11th.”

“REALLY? A whole month?” I thought of the anticipation and the anxiety that would build as the pain increased. Then I realized something worse. May 11th is opening night for “Bye Bye Birdie,” her school play. Cast as Rosie she’s been preparing forever. There was just no way. I swallowed hard.

“What if I can’t take that date?” I held my breath,

Cheery changed her tune. I’m sure she thought I was being difficult. I tried to explain. No luck.

“The next date is May 20th, then you’re into June.”

I was playing out the June calendar in my brain. ComicCon with Dad, school dance, graduation, West Virginia… forget about the Long Course Swim Season and the 2 meets we knew she’d have to scratch out of, and the last CYO Swim meet she’d ever be eligible for- that was out too.

There was never going to be a good time to be out of commission.

Deep breath. “Any chance you’ll have cancellations?”

“No.”

“Ok then. May 20th it is.”

And after telling me I’d need to give up a day the week before for formal pre-surgical testing, which is a first for us, as she grows up, I didn’t bother to explain I’d just missed 16 days of work for vocal cord surgery. I just said, “Thank you.”

Meghan’s relationship with her right knee is complicated. It started giving her trouble before she could talk, as her first babysitter will attest to hours rubbing that knee. As she grew, it got worse. It always seemed to bother her. She pushed, and pushed. Eventually it was hot to the touch and pulsating. The diagnosis came in 2008, after multiple mis-diagnoses, including “her pants are too tight.” Finally, a team at Sloan Kettering, adept at ruling out cancer, was able to diagnose a high flow arteriovenous malformation (AVM) in that knee. We were sent off to Interventional Radiology at Lenox Hill, where the doctor confidently told us he could eliminate this AVM in “one procedure – 2 tops.” Between December of 2009 and February of 2012 there were 4 embolizations on that knee.

The doctor seemed almost relieved when she was diagnosed with Cowden’s Syndrome in the fall of 2011. It seemed as if he felt better about himself, like there was another explanation to justify why the darn thing just wouldn’t quit. By that point she was being run through the surgical mill, so we welcomed the 2 and a half years of monitoring. It seemed to stabilize.

But, as everything overlaps and one thing leads to another, there was pain. There was pain that she was repeatedly told should not be there. Yet, no matter what they said, the pain was there, and it was consistent, and it was real. She pressed through. She stopped soccer and tried dance. The knee was cut out for neither. She found her way into the pool in the spring of 2013.

By that fall we had signed her up for a 12 month competitive swim team, and things were looking up. She swam a full year, getting stronger, becoming more confident, and finally feeling like an athlete.

There were other surgeries in between. And there was that knee pain.She had been prescribed Celebrex to substitute for the Advil that was being consumed in clearly excessive quantity to allow her to function. And the Celebrex was wonderful. Until it wasn’t.

And in May of 2014, two months after a complete thyroidectomy (thank you Cowden’s) she lay in the hospital in severe GI distress. It took a week to stabilize her. I was scared. Out went the Celebrex, fried food, and a whole host of other goodies.

But, little did I realize, that Celebrex was likely the reason the AVM had quieted down. Apparently the drug has properties that work on blood flow. A few months off of the Celebrex and all hell broke loose. Literally. It was November of 2014, the Tuesday night before Thanksgiving when she collapsed outside of swim practice, unable to walk. Our travels that night took us directly to Lenox Hill ER because we were sure it was the AVM in action again.

Proven right when the surgeon showed up early the next morning giving me a surgical time for her, they drained 50ccs of blood from the knee that day.

Blood and bone and tissue are not friendly. It’s like neighbors invading space. You can tolerate it for a while, but it doesn’t take long before the damage is irreparable. It became evident there was structural damage beginning because the blood had begun to wear things away and allow the knee cap to move to places it did not belong.

We were advised to consult with an orthopedist, and we did. He wanted a coordinated arthroscopy where both he and the interventional radiologist would be in the OR together. It became an orthopedic procedure. The patella was moved back where it belonged. Things were cleaned out. Recovery was smooth relative to the emobolizations. We were told it would last a few years.

In January 2017 we were pretty much released from interventional radiology. We were told the AVM seemed quiet and we need only bring her back if she becomes symptomatic again. In February the knee pain started again. Slow, but steady, it kept growing in duration and consistency. At a routine visit the orthopedist mentioned the potential need for another arthroscopy. He reviewed the January MRI and showed us where the patella had shifted again. He said her growth plates were “wide open” (a scary thought at over 5’7″) and that this would continue to be an issue at least until she finishes growing. He offered her a “patella stabilizing brace” for 6 weeks, to see if it would do the job he wanted done.

Tuesday the 11th he looked at her knee for less than 2 minutes before he started making plans for the surgery. He explained to us what he needed to cut and move, and why it was time to get it done. We had the necessary conversations about length of time out of the pool, and other restrictions. We left, quiet and resolved. The only thing she asked me was to just get it done as soon as possible.

So when the phone rang in the hall last Tuesday afternoon, I felt sucker-punched, again. Regardless of how many times I tell myself, and her, that it “could be worse” and we have to “look at the bright side,” the reality is that sometimes it sucks. And that’s just the frank honest truth. Scheduling your 7th knee surgery in 13.5 years is just not ok, not even a bit. I was grateful for Grandma, and the ability to be distracted for a bit. Without her memory, she is just real. That was a good day. And that day she loved having me. I cherished the visit.

I spent Wednesday in the grocery shopping marathon, and Wednesday night at swim.

Thursday was for an extensive blood draw for Meghan and a triple dermatologist appointment. Meghan headed to play practice, and I traveled to my vocal follow up in NYC.

My report was adequate, but not what I had hoped for. Still swelling. Still be very careful. Still rest when you can. Still exercise caution when you get back into your program on the 19th.

Friday was for vocal therapy. And for trying to put the house back together. And for painting upstairs, and washing the dist off the curtains, and visiting my in-laws. It was our 17th Anniversary. We sneaked an hour or two for dinner together…

Saturday was voice lessons, and…

Somehow it bled into Sunday, and Easter and some time with family. But, it was immediately back to the painting.

By Monday I was waiting for the blood results, hoping to catch a call from one of the three doctors on the order. We hit the orthodontist to have the retainer tightened, and a few things at Costco before it was time for swim…

I am focusing on the sunny days. I am trying to find some time within the chaos to be still.

I asked Meghan why she was so uptight the other day. It really was a stupid question. This was the grossly abbreviated version of ONE aspect of her real life.

And tomorrow she will have to practice smiling and responding to the question “How was your break?” in the only socially acceptable way. “It was fine, how about you?”

Fine… it has so many meanings. We don’t want to bring people down all the time. It gets hard to have a conversation sometimes though. Felix and I realized in the years since we’re married, one of us has been in an operating room somewhere in the neighborhood of 34 times. A lot of our days are spent recovering. Physically, mentally and emotionally recovering. Fighting financially against incorrect billing, and generally trying to breathe.

I’ve said it before and I’ll say it again, we would not trade our lives for anyone’s. However, just like in anyone’s life, some days are better than others.

I’m anxious for a vacation not peppered with appointments and surgeries.

Until then, maybe I should teach Meghan to answer “How was your vacation?” with “It’s complicated…”

#beatingcowdens

Overlap and Regrowth – Living with Cowden’s

Published on October 5, 2016 by beatingcowdens1 Comment

So, the night I was recovering from my breast surgery on August 19th, I haphazardly checked my Email.

There sat an Email from Meghan’s endocrinologist that shook me out of my anesthesia recovery pretty quickly. There is no time “in between” because there is usually SOMETHING going on. Overlap is a way of life.

Meghan had had lab work drawn the 3rd of August. Routine thyroid labs, and some tests from the gyn worked in. On the 18th the EMail from the gyn told me she was suspicious of a few lingering “issues” and we would address them at her late fall appointment.

The endocrinologist’s EMail said he was concerned about the resurgence of her “thyroglobulin” levels. He wanted to now treat her as a “high risk” thyroid cancer patient.

I almost dropped the phone, alone in my dark room. The last paragraph said he’d be on vacation for two weeks, and we could talk when he returned. I read. And I reread.

Decoding step by step – “thyroglobulin” is created solely by thyroid tissue. Someone with a complete thryoidectomy would have non-detectable levels about 3 or so months post operatively. Only thyroid tissue generates thyroglobulin. If some was left behind after her surgery a small number would have stabilized early. But for it to be gone, and then show up… This meant there had to be regrowth. And yes, it happens. Maybe to everyone, but definitely people with Cowden’s Syndrome. We regrow lymphoid tissue.

It’s a superpower of sorts. Except instead of being a really fun, save the world, or generate sunshine and happiness, superpower, it’s more of the – hey let’s add some more worry to your life superpower.

While the pathology on the thyroidectomy was totally benign, the mind can play lots of tricks. Lots of tricks.

I’m not slow. I am pretty well read. I’m equipped with the knowledge that having faith and worry are counterintuitive. Except I’m honest. And with matter of my girl, worry sometimes overwhelms. I never claimed to be perfect.

So I spent the last 6 or 7 weeks retreating. I barely spoke of this fear, this nagging thought that not only could the thyroid be growing again, but what if… what if all those precancerous things that we took out with it were somehow festering.

I made it my job to access the lab work. And it was a JOB. You would have thought what I was asking for just to see a list of messed up thyroid numbers. We live in a pretty crazy society. But, finally, after 2 weeks of labor, and getting increasingly vocal, I received 4 copies. All on different days. All from different people. But, I got to look at the numbers.

I am a numbers person, so I took some relief in the thyroglobulin being only 3. Undetectable was better, but 3 was on the better end of things. It was clearly well under that “10” I had found. So I took to waiting and ticking away the days until the next blood test. There was a thyroid dose change, and 6 weeks.

I broke my toe while recovering from the implant exchange, a few weeks after learning I was suffering not only from a single vocal cord lesion, but vocal atrophy secondary to premature aging, the latter which was likely due to the hysterectomy that became necessary after the breast cancer diagnosis in 2012.

And yes, I meant that to be a run-on.

It all kept me as occupied as I could while I hid in the start up chaos of September. I hate September. But, when you’re suffering personal angst and need cover under which to hide – it’s September for the win. I poured myself into setting up 25 classes, and over 550 students, logistically, and academically. It took some time.

And I kind of just ducked. Phone calls, texts… I played along.

“High Risk” thyroid cancer patient… like a recurring nightmare.

One of the reasons I was afraid to talk was the fear that someone would talk to be about thryoid cancer being the “best” cancer. Please, no one ever do that. When it comes to my child, a survival rate in the 90%s doesn’t soothe me. When it comes to my child, I, like every other parent want 100%. Nothing less.

I was scared.

We got the labs drawn at the hospital on Weds. the 28th.

On the 30th I was exploding. Every second seemed like an hour. Every scenario was playing through my head. So when I got the call that the test wouldn’t be ready till Monday I dissolved into a tiny puddle.

And then I did what every other mother does. I put on my big girl pants and got through the weekend.

Then Monday there was a brief phone call.

The thyroglobulin has returned to undetectable.

WHAT? How does that even happen? I sent out a million questions rapid fire. Most of them had no answer.

Crisis averted. Prayers answered.

I explained to Meghan why her Mom had been a bit extra on edge. She’s really growing up because she was grateful to have not traveled that mental journey with me, and appreciated me letting her in when it mattered.

Next blood test November 11. And we’re going with the theory that the thyroglobulin was a one time deal. An error. A miracle. Whatever. A win.

We’ve got 6 weeks. Some Mommy doctors. Some swim meets. 6 weeks. Sometimes that feels short. Right now it’s blissfully long.

On my knees in gratitude, we remain…

#beatingcowdens

Body Betrayed

Published on July 30, 2016July 30, 2016 by beatingcowdensLeave a comment

The first time I felt the pain it was last summer. It was under my right implant, and from my armpit a bit down my side. The pain lasted a few days and then eased itself into a chronic state of discomfort. I went from almost 4 years of barely noticing, and sometimes forgetting the silicone implants that had replaced the breasts in their earliest stages of cancer in March of 2012 to thinking about them all the time.

Now I knew the right one was there. And it was bothering me. For physical, and deeply psychological reasons. It was getting in my head. Messing with my focus.

I went to see my plastic surgeon in November of last year. I adored her. I wanted her to make it better. Her words were reassuring to a point. The implant was intact. There was some minor movement. I should get it taken care of but it wasn’t an emergency.

Then there was the bombshell. She was no longer accepting my health insurance. I definitely cried right there in the office. She cried too as she apologized, handed me the name of the doctor I needed to see and scurried out of the office. I still adore her. But, I’m sure I’ll never see her again.

So, faced with the reality that I needed to start over, on a journey I wanted to forget ever happened, I did the logical thing. Nothing.

I lived in a state of denial for months. And slowly I started to restrict the activities I would do with my right arm. Certain basic tasks would make it bothersome. Fitness-wise, push ups, planks, weight lifting, and even the elliptical were out. I no longer trusted my own body weight on that arm.

One day in December I mustered up the courage to call the office of the new doctor. It took a lot. I trembled. I had my calendar set up for January and February. I was ready to schedule that consult.

“Late March…”

I heard nothing past that. After I was told the earliest appointment I could get for a consult was late March. I hung up the phone and did what I do when excessively frustrated. I cried.

When I saw my breast surgeon for our annual check up in February, she noticed the subtle problem. She asked who was looking at it. She also proclaimed it, ‘not urgent.’ I told her about my experience trying to get an appointment with apparently the only plastic surgeon that does breasts and takes my insurance left at this hospital. She vowed to have her scheduler help me get in.

I met with the scheduler.

I never heard from her again.

March came and went. Life was busy. Meghan was in and out of surgery, Pop had been so sick, Grandma was struggling, we had the fundraiser…I found a reason not to call every single day.

Then I really wanted to work out my arms again. Walking was getting boring. I mustered up the courage in April to call.

July 18th.

I had to take it. I cried again. I tend to cry most in my life when I am frustrated.

I brought Mom with me to this appointment. I never need another pair of ears. I did this day. I was a wreck.

The doctor was wonderful. Kind. Sensitive. Funny. Everything I feared he would not be. I exhaled. He said it was again, not an emergency. But, he saw my issue, understood my discomfort and agreed at my convenience he’d try to fix it. He ordered one test for a sensitive spot under my arm, and asked me to try some physical therapy when I could.

I talked it out with my mom. I talked it out with my husband. After waiting almost a year, I was ready to get it done and stop favoring my dominant arm.

I called to make the appointment for the test. Except it had to be done in the hospital. And it needed insurance pre-authorization. And I tried for one solid week to get in touch with this doctor’s office staff. Three Emails, 2 phone messages and several canceled appointments, I finally got a human.

I got them moving quickly, and they got the insurance authorization immediately. I scheduled the test, and it was fine.

Then I called to schedule the surgery. I was thinking I could still make August. I was wrong.

What about September?

UGHHHHHHHH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

I took out the calendar once again. We have 4 days off in October… No luck there. No, he doesn’t work December the week I’m off. And in February we have the fundraiser…

Looks like once I calm down I’ll schedule for Spring 2017.

When the time came to have the double mastectomy I opted for the quickest route. I was out of the hospital with reconstruction complete in 28 hours. I wanted this done. I was so incredibly fortunate not to need treatment. I was grateful. More energy to focus where it mattered.

Except once cancer has lived inside of you there is this uneasy feeling that can not be explained. There is this knowledge that somewhere in your body those cells did what they were not supposed to. There is this feeling that you were violated and betrayed by your own body, from the inside out. It damages trust deeply. It’s hard not to trust your body. It can really mess with your mind. So understandably, I was interested in functioning without that thought process. I had become adept at ignoring my scars and “nipple-free” implants.

Until I started to feel them. Every damn day.

This is minor. This can be fixed. And it will be. Just not in a time-table anywhere close to my liking.

I picked up the free weights again today. Really light. In my chair. What’s the worst that happens? Really? If it becomes an emergency they have to move faster.

Otherwise, I’ll balance that full-time job, that beautiful, active 8th grader, and a boatload of afterschool activities. I’ll try to get out of my own head.

But, no matter how vigilant, or how confident… thoughts of the potential renegade cell, lurking like a thief in the night never quite go away.

#beatingcowdens is a full-time job

Counting… Our 400th Post!

Published on July 21, 2016 by beatingcowdens1 Comment

“Count your many blessings, name them one by one…” Grandma used to sing years ago when we would complain about nonsense. She was a little tough sometimes my Grandma, and maybe that’s where I got it from. But, many times she was right, whether we listened or not. (Maybe that’s where I got that from too? ;-))

I like numbers. They are logical. They are what they are. In a world that often makes no sense at all, I find order in numbers.

Except sometimes I’m faced with the question of what to do when numbers become overwhelming in and of themselves.

This marks the 400th post on this blog. While it’s by no means a masterpiece, when I sometimes poke through old posts I remember so much of where we’ve been. It’s a definite roadmap of our journey, and Meghan and I take great pleasure when people from around the world reach out to us and cite the blog as a source of comfort and strength.

Cowden’s Syndrome is rare enough that it can be a lonely diagnosis. Being able to reach people the world over has been a victory for us, and them.

With over 170,000 hits on various posts I know we are getting the word out. Slowly.

I might have wanted to celebrate this post. I might have wanted to make it really special. But, I’m counting something else today.

Today was the 17th time I’ve gotten off the phone with the nurse, giving me pre-operative directions for my daughter. Today, I listened as I always do, reciting the directions in my mind before she spoke. Really my only interest was the time. The rest is routine. I want to stop counting. I want to just go with it. I can’t give you an exact count on mine anymore – because once you’re a mom, well, you just focus more on what’s important. And you become less important. And that is a gift, denied to many, cherished and appreciated.

Somehow though, if I stop counting for her, it makes her struggle feel less valid. The numbers give her strength. A badge of courage. Something concrete in this world of abstract.

My post last night was about “Patience”

https://beatingcowdens.com/2016/07/20/the-waiting-place-2/

And as I poked around the blog this morning I was taken back years, through so many similar posts.

https://beatingcowdens.com/2013/01/10/blessings-and-patience/

https://beatingcowdens.com/2012/07/02/the-waiting-place/

https://beatingcowdens.com/2015/05/06/hurry-up-and-waiting-rooms/

https://beatingcowdens.com/2015/08/28/losing-count/

Their similarities are uncanny. I guess the story doesn’t change much. Hurry up, wait, surgery, wait, recovery, wait, follow up, wait…

So I’ll leave this 400th post as unremarkable. Nothing has changed. Nothing will change. And that’s the precise reason we keep counting, and keep telling our story.

Tomorrow, surgery number 17. 9:15 arrival. As usual, prayers always appreciated.