Desperate times…

Published on October 10, 2019 by beatingcowdens4 Comments

I took the knee scooter to the mall.

I brought my husband. Well, technically he brought me. And he lugged the giant contraption down the stairs and into the back seat of our “big enough for most things, but not this thing” Sonata.

The screen on his iPhone had cracked and he needed to go to Apple. I needed an outing worse than a puppy who has been crated too long.

He dropped me off at the door. He rode the scooter through the parking lot to meet me. Apparently, like so many other things, its a LOT more fun when you don’t need it.

I laughed in spite of myself at the sight of it. I was also glad our teenager had decided to stay home. The sight of it all would have likely been just too much.

People stare right at you, while simultaneously judging you as you drive this thing. The local mall lacks the tolerance of Disney World. In fairness, from face on, it looks like you’re using wheels for fun. It’s not until I have passed, if they bother to look, that they would see the giant walking boot resting on the knee pad.

Today is 8 weeks and 1 day since I’ve been “booted” again. 57 days.

I have had more surgeries in my life than I can count. Not a single one of them kept me down for 8 weeks. This foot has been messing with my life for over 8 months.

Double Mastectomy – back at work in 5 weeks.

Hysterectomy – back in 2 weeks.

I once had arthroscopic knee surgery over a long weekend, and was back on the 4th floor in my classroom the following Monday.

Vascular, over the February break…

Biopsies, a day tops…

We always say recovery pain is the best kind, because you know it’s going away.

And yet the answer to “Does your foot feel better?” still remains “Not really.”

My kind and compassionate local podiatrist, in a combination of frustration at the injury that won’t heal and my insurance company making it harder for him to treat me, has advised a visit to Hospital for Special Surgery. I’m sitting. Foot up, phone in hand, waiting to try to schedule.

I rode that knee scooter all over the mall. I rode it into the grocery store too. Quite simply, I’m tired of being locked in my house. It is truly a ridiculous and ingenious contraption.

If you asked me 2 years ago if I would ever… the answer would have been “NO WAY!”

Except if I keep learning anything through these years of life with a rare disease, and also just life, it seems to be” never say never…”

I had a boatload of things I wasn’t going to do as a parent. I’m pretty sure the first one was undone about three hours in… right after the anesthesia from that c section wore off…

Wasn’t going to… feed certain things, watch certain things, give certain things, etc. etc. And then you find yourself learning that all the plans in the world are suddenly invalid as you just try not to damage the tiny human.

A great deal of my pride was left behind in the OR where she was delivered.

I lost a bunch more of it through a slew of breast biopsies prior to the double mastectomy in 2012.

The uterine biopsies, the hysterectomy, the “cancer screening” human exams took a bunch more.

And there are few things quite as humbling as a breast MRI of your silicone implants.

I was never “in fashion” but I used to take great care in what I wore. Things were dry cleaned. Stockings and heels were worn daily.

Then there was back pain that seemed only better in sneakers. Coupled with a significant weight loss my wardrobe evolved into jeans, t shirts and sneakers. May be a dig at my early judgment of “too casual” teachers…

Life, at it again…

If we are open, and able to be introspective, we are changing and growing all the time.

I am in a painstakingly slow process of relinquishing control.

Control is really largely an illusion anyway.

Faith, trust, hope, and the ability to embrace what the future has in store, these are my current goals.

I’m a work in progress.

So if you see me and my knee scooter, be kind. You may even see me up and down the block. These are, after all, desperate times…

We’re done being caged up. I need some fall air. I am ready to get well. Since my foot isn’t cooperating, I’ll start with my mind.

#beatingcowdens

Experience Dictates Your Reality

Published on January 20, 2019 by beatingcowdensLeave a comment

I usually have a plan when I sit down to write. Typically there is a topic, or a concept in my mind or on my heart. But, as is clearly evident by the two months of silence on this page, I’m struggling.

Having a PTEN Mutation, and being the mom of a young lady with a PTEN Mutation of her own has been nothing short of life-changing. Things that happen in our lives change the course of our travel along the path. That statement is not even intended as a judgment, just a factual statement that most people can relate to.

Sometimes when we are talking in the car, my girl and I play the game of “what if?” It can be a dangerous game, or it can be cathartic. For us it is typically the latter. No matter how many ways we can come up with that things “would have” or “could have” happened, we are always sure that we have become who we are because of the turns our road has taken. And, on most days, we like ourselves.

Experience does dictate your reality, though.

Two or three people observing the same thing will interpret it to some extent based on the experiences that have brought them to this point in their lives. That is neither a bad thing or a good one. It simply is. And to understand each other as humans, it is something we need to recognize.

One of Meghan’s Christmas gifts was a T shirt that says “Humankind- be both”

It was chosen for her deliberately because it is something she believes and aspires to. being in a high school experience where she meets many young adults from a variety of life circumstances, she is developing an even deeper understanding of the situations in our lives that create who we are. She is happy there. She is accepted there. Life stories are understood, and often unspoken.

Where we have been, what we have seen, and what we do with those experiences are such an integral part of our lives. Many of them we can control consciously and fully, while others take a lot more work to harness. The hardest things to get control of lie deep in our own hearts and heads.

The day after Christmas we made the gut-wrenching decision to put down our Lucky girl, a lab/ border collie mix that had been a part of our family since Christmas in 2005. There was sparsely a memory Meghan had that did not include Lucky. And the absence of the clicking of her paws and her animated noises leave our house a way too quiet.

We have our beautiful April, a mutt rescued very quickly after our beloved Allie passed away in December of 2014. Lucky needed April to distract her from her own broken heart. And she did an outstanding job. April is finding herself now, as an “only” while we all navigate through a new phase of life with one dog.

If you have lost a pet you understand the gravity of the loss and how it changes the dynamic of the family. If you have not, you’ll have to trust me. Or not. It’s up to you.

Three of us, well four if you count April, are grieving Lucky’s loss. Yet, we are all doing it differently. Lucky lived here, but she was Meghan’s dog. She came in to our lives when Meghan was only 2. Experiences were different for all of us, yet the depth of the loss runs deep.

Experience and personal reality are intimately connected.

Almost two weeks ago I fell at work. Hard. It was so frustratingly avoidable. I caught my foot on a child’s chair. My brain and my feet were not communicating. There was nothing to break my fall except my shoulder as it hit the base of another chair.

I stayed on the floor for a few moments trying to recover. Looking up at the faces of 30 third graders gasping “Are you OK?” I knew it was essential that I at least look the part rather quickly. I got myself to my feet, mumbled an independent assignment for them and got to the phone to get some help.

After completing paperwork and gathering some ice, I was sent out to seek medical attention. After spending a few hours having x-rays of a foot, two knees and a shoulder, I was sent home to ice and rest. I was also told to contact my plastic surgeon.

No it was not a disfiguring fall, except part of what broke the fall was also the right breast implant. The one just under the still slightly off-color shoulder. It felt very “off” and it was impossible to ascertain whether the fall had somehow caused the implant to rupture. I needed an MRI.

I could not get any associate of my surgeon to physically see me. The fall was on a Tuesday, and my doctor ONLY sees patients on Monday. So I was left to schedule the MRI and wonder.

The looming appointment was not nearly as bothersome as the wonder.

People fall every day. Depending on age, physical fitness, the circumstances of the fall, they will all have a different reaction. If you have a PTEN Mutation, which led to a breast cancer diagnosis and a double mastectomy at the age of 38, and that double mastectomy was followed by silicone implants, which already had to be replaced in 2016, and you fall on and near one of the implants from a height of about 5 foot 7, well your reaction might very well be to worry about that implant. Mine was.

I just wanted someone to look at it. I wanted someone to tell me the visible changes were not to be worried about. But, no one would do that. So I was left alone, home healing, with full access to the internet.

DANGER.

While I have learned a good deal of what I know about my body and Meghan’s through skillful sorting through ‘fake’ and ‘real’ information, equally available on the internet, I now had plenty of time to investigate what had been a mention weeks earlier in one of my on-line support groups.

Breast implant associated anaplastic large cell lymphoma, or (BIA-ALCL) is something I never heard of until it was brought up in discussion by another patient with Cowden’s Syndrome. I now had all the time in the world to fully investigate and I was getting furious. While I do not put my faith fully in any source, I will link in FDA pages here. A careful eye will notice that most links when searching this condition are plastic surgeon sponsored.

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm239995.htm

https://www.fda.gov/medicaldevices/productsandmedicalprocedures/implantsandprosthetics/breastimplants/ucm064106.htm

For those of you interested, clicking the links above is likely to give you information you never heard before. Unless maybe your surgeon was much more forthcoming than mine.

I was relieved to learn I had the “smooth” textured implants, the ones least likely to lead to BIA-ALCL. I was disturbed to read the FDA recommendation the implants be evaluated via MRI 3 years after initial surgery and every 2 years after. No one had ever mentioned an MRI to me post mastectomy. Ever. But that shouldn’t be a surprise. A complete search of all my paperwork from the initial implant surgery and the revision failed to uncover ANY documentation of ANY potential additional cancer risk. Being diagnosed with a condition that had greatly increased my likelihood of so many cancers, I may have thought things through differently. Maybe I would not have. But regardless I would have felt as though I had made informed decisions.

Now I was just mad, hurt, and violated.

And, I was dealing with a trauma to the area surrounding this foreign object in my body, causing visible swelling, with no one to calm my angst.

By the time I got the call post-MRI that there was no rupture, I also read the report that said basically nothing other than the stability of the implant was evaluated. A wordy disclaimer.

Risk of BIA-ALCL is rare. There is no documentation as to whether our subgroup is any more affected.

It doesn’t matter anymore. I will at some point in the not so distant future move to have these objects removed. “Superfluous tissue” is what my mom called her breasts 22 years ago when they were removed. She never had implants. She’ll be 70 next month and is feisty as a firecracker.

I think I found my motivation to stay thin and spry.

Our experiences influence our reality. All this from an unfortunate fall. Even as I sit here almost 2 weeks later, the pain in my foot telling me I’m not sure there is not an un- diagnosed fracture there, I have to wonder if that fall was that unfortunate after all.

I decided finally on a primary care practice. I stopped looking for one who knew or cared to know anything about Cowden’s Syndrome. Instead I found one capable of screening me for the things any 45 year old needs to be screened for. I think I may finally be at peace with that decision. I had “well-visit” bloodwork Saturday, and I will have my visit with the staff’s FNP on Wednesday. I will talk to her about my basic asthma and allergy medications, as well as the script I usually hold for occasional migraines. I suspect all that will go well.

Then I will talk to her about the fluid in my right ear. The fluid that has been there for at least 5 months. An ear ache in early September brought me to urgent care. That repeated 3 more times, in October, November and December. Each time there was an antibiotic. Once there was a referral to a sub-par ENT who have me a steroid. Sometimes the fluid leaks out of my ear while I sleep. Sometimes I swear its finding it’s way out of my eyes.

My mother has terrible sinus problems. She has since she’s been my age. It’s probably rotten genetics not PTEN related. Mucinex keeps me away from infection and eliminates the pressure for 4 or 5 hours at a time. But this many months of Mucinex has a tendency to make the spleen angry. And I don’t want to get sidetracked talking about those splenic lymphangiomas.

I want an MRI of the sinuses. I want to know nothing sinister is going on. Then I want to see the ENT who did the surgery to save my voice 2 years ago. I’m hoping we can get that process started on Wednesday.

The calendar is foreboding. We are heading into a doctor cycle – both of us. And while I am grateful for the lull, I get familiar feelings of anxiety and dread as I lock the long afternoons in traffic into the calendar.

My daughter has the formal diagnosis of Post Traumatic Stress Disorder secondary to medical trauma. There are people who like to pass judgment on that. I wish they wouldn’t.

Her service dog will come eventually. People will have a lot to say then too. I won’t notice because I will be exuding gratitude at all times.

Everyone you meet is fighting a battle you know nothing about. Be kind always.

The struggle is real.

Experience dictates your reality.

The trick is to realize while everyone leads a different life, that reality is the same for all.

Humankind – be both.

#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

5 Years and “Sag-less” in my 40s

Published on March 5, 2017March 5, 2017 by beatingcowdensLeave a comment

March 5th. 2012

One of those dates that will stick with me forever.

On March 5th of 2012, I made my way early in the morning to the 10th floor of NYU. I signed all the papers with my husband by my side. I shook. I prayed. I was terrified. But, I had strong resolve, and there was no turning back.

Several months prior, my daughter, and then I had been diagnosed with the PTEN mutation that causes Cowden’s Syndrome. This mutation is responsible for increased tumor growth, both benign and malignant. It causes polyps, hamartomas, vascular malformations, and a whole bunch of other messy things. After our diagnoses, we began aggressive and age-appropriate screening.

Meghan was 8. I was 38.

They started with her thyroid. And immediately found issues.

At exactly the same time I was being sent through screening for the highest risk in my age group. Breast cancer.

I already had a mom- a 15 year survivor of bilateral beast cancer. (She does not have the PTEN mutation.) I had already had several surgical breast biopsies through the years, with increasingly foreboding pathology. But, I could not have been prepared for the surgeon I met in NYU Clinical Cancer Center in January of 2012. She introduced herself to me, having already torn through my previously received medical record, and said we should set a date. When I asked for what, she said quite simply, “For your prophylactic bilateral mastectomy.”

A little stunned, I caught my breath and asked why? “It’s not a matter of IF, but WHEN you’ll get cancer,” she said very definitively. “We need to get at it first.”

She sent me to her scheduler, who coordinated with the plastic surgeon. The date they came up with was March 5th. I asked why I couldn’t wait until the summer, and I was told that she thought that would be a huge mistake.

I called my husband, shaking. “Do what they say,” he calmly asserted.

So I left that January day with a script for a bilateral breast MRI – just to make sure there was no cancer- and a surgical date.

The MRI was negative. I am still amazed by that. Five weeks prior to the surgery there was NO FINDING on the MRI.

I met with the plastic surgeon, and much to her chagrin, I opted for immediate reconstruction, deciding to forgo the preferred method of tissue expanders. She reminded me that the results would be “imperfect.” I knew I could not delay my recovery by months. I had a daughter, a family, and a job to return to.

The surgery was uneventful.

I vomited repeatedly as I left the house that morning. I cried as I walked into the OR. My surgeon called me “brave.” I woke up with a strange feeling of empowerment.

I left the hospital 28 hours later. There were drains and wrappings, but there were things to do. I met on the refinance of our mortgage and managed parent teacher conferences with my daughter’s third grade teacher all before the drains were removed.

The day we went to have the drains removed, for whatever reason both Meghan and Felix were there. The plastic surgeon was the first to mention how lucky we were we caught “it” early. I was confused. She said, “The cancer. It was very early and far away from your chest wall.”

There was silence in the room as we all processed the word “cancer.”

She realized then she was the first to share the news. Our next stop was the surgeon. I pored over the pathology report and kept getting stuck.

I went from being a woman “getting ahead of things” with a “prophylactic bilateral mastectomy” to a “cancer survivor” in a moment.

I was told had I pushed the surgery to the summer, I would have been in a “fight for my life.”

I’ll always know I am more fortunate than any of the women who needed, chemotherapy, radiation, and other treatments to keep their cancer at bay. I have not traveled the road as they did. I will forever admire them. But, we are kindred spirits living with the daily knowledge that cancer cells once lived inside of us. That is a feeling, and knowledge that can not be explained. You either know it, or you don’t.

My implants lasted less than 5 years. The life expectancy is 15. This past summer they were replaced. Scarring was severe on the right side, and the scars needed to be broken up. A new pair replaced the old. Nothing flashy. Quick surgery, quick recovery. No big deal. Just a reminder of the reality that will follow me forever.

Today I celebrate that reality.

5 years officially Cancer-free.

Five years – and by the grace of God, countless more to go.

Five years- the first of many with sag-less silicone, size small shirts, and the ability to go bra-less without being noticed.

I celebrate my Mom – 20 years a survivor this year – my role model. My motivation.

I celebrate inside my own quiet- unable to speak as my voice heals. I celebrate even through miles of survivors guilt. I celebrate despite my broken heart as so many around me are taken by cancer. I celebrate because that is what they would want most.

Once you’ve been there. Lived it. Watched it. Seen it. You get a deeper sense of how precious life is. And you celebrate what you have each day. It’s not easy. Life can be messy. But, we do our best.

I celebrate to honor those who’ve been taken, those who work so hard every day to smile through, and for those whose diagnoses are yet to come.

Every day is a gift. As my friends at #stupidcancer would say – Get Busy Living!

#beatingcowdens

To Do Lists, Digital Footorints and Random Thoughts

Published on January 7, 2017 by beatingcowdens1 Comment

I’m not one for New Year’s Resolutions. I don’t believe in waiting for a specific day to make changes. If they are needed, wanted, or warranted – we make them. Right then. Otherwise, I’m all about just being your best you- every day.

Parenting a teenager is tough stuff. Even when your teen is just a good soul, a hard -worker, a good student, and a compassionate human.

There are people who would challenge me that we have it easy. They give me the default model, that raising one child has to be easier than raising 2 or 3 or 4 or 5 or more… And maybe they are right. I will never know. But, they won’t either. That’s the point.

Raising our children, or living our lives is not meant to be a discussion of “harder” or “easier.” There are challenges present in every single scenario that comes to mind when I think of EVERY family I know. In this house we talk a lot. My girl and I, we talk about those other lives we know, and their battles. And we send love and prayers and warm wishes, as they do for us. It’s not a contest, it’s real life.

2016 saw the results of two uterine biopsies of my then 12 and 13 year old, with results that left us uneasy, and in a perpetual state of “cautious waiting.” It also saw me back in surgery, replacing less than 5 year old silicone implants because one had “fallen” And then, it saw my clumsiness as I spent 6 weeks booted with a broken toe.

2016 saw loss in my family, as we mourn Pop, and are readjusting with Grandma in her new living space.

Yet, we made it. We came out with a few bumps and bruises, but we made it.

2016 ended with 8th graders we know taking High School entrance and Scholarship Exams. The next weeks will bring jubilation, laughter, and tears.

Yet, we WILL make it- all of us.

The “To Do” list on the yellow pad to my right is busy. The fundraiser is about a month away and there is lots to be done.

There is also an MRI, a vascular surgeon, an orthopedist, an endocrinologist, and a gastroenterologist for Meghan, as well as Pre-surgical testing, a tentative surgery date, and a breast surgeon follow-up, an oncologist, and an endocrinologist for me. All before February 22. That’s IF no one requires additional testing for anything…

We will fit in the “regular” stuff too, like swimming, and meets, and school projects, and drama… well you know what I mean.

We are working hard to fit Cowden’s Syndrome into our lives, and not to let it RUN our lives. It’s a subtle difference on paper, but a HUGE one in practice.

And when the thought of running a house that contains TWO people with a rare genetic disorder becomes overwhelming – we try to step back and count our blessings. Because at the end of all days, regardless of our struggles, it is good for us, and those around us, if we can remain positive. I’m not saying we’re perfect at it – far from it actually, but it is a goal, and an on-going work in progress.

It came up this week when we were preparing for the fundraiser and talking about social media. Actually, it has come up a bunch of times since the iPhone became attached to her hand almost 3 years ago…

Digital footprint – how are you presented on the internet? What if someone “googled’ your name? Now? 5 years from now? 8 years from now before your job interview? The whole concept of this blog has been discussed in depth. Meghan, whether she likes it or not, at the age of 13 has an identity that is connected to her rare disease. Now, don’t misunderstand me for a minute – a close read would CLEARLY indicate, she is NOT her disease, but she will never have the opportunity to deny the diagnosis. That’s forever, and its important.

What she does with it, well that’s ongoing. She’s made some pretty dynamic choices to date. Sometimes she feels a bit like she has something to prove- so she does.

She’s been asking me for “snapchat” lately, and eventually I’ll give in. But, I’m one of the mean moms who makes her wait. Instagram is plenty to manage for now.

This week Meghan was nominated as “Inspirational Staten Islander of 2016.”

It prompted me to “google” my daughter. So when I type in her name connected to our home town, these are the first links to surface…

How Meghan Ortega saved her Mother’s Life

12 Year Old With Rare Genetic Disorder Chosen as Inspirational Islander

Staten Island 9 Year Old and Her Mom are on a Mission….

12 Surgeries in 11 Years- Living with Cowdens Syndrome

Meghan Ortega- NYS Senate

I’ll take that top five any day.

And just for good measure, I switched to an image search. These 5 were on the first page…

Meghan in her elementary school with one of her idols- Borough President James Oddo

An old one - when Meghan was named "Hero of the Month" by Child Life after an early surgery — An old one – when Meghan was named “Hero of the Month” by Child Life after an early surgery

SI Children's Museum Achievement Luncheon Award — SI Children’s Museum Achievement Luncheon Award

Rare Disease shirts from the PTEN Foundation

One of my most proud - NYS Woman of Distinction, nominated by Senator Lanza in May 2016 — One of my most proud – NYS Woman of Distinction, nominated by Senator Lanza in May 2016

And, just to be sure, I even tried Youtube.com, only to find a video made in February 2016

Apparently she has listened, carefully. I don’t know what the future holds for my bright eyed activist. I know she’ll continue to take heat from a few along the way. I also know she’ll find the strength to rise above and press on. Because, that is what we do.

Would she like it is she were named “Inspirational Staten Islander of 2016”? Sure. Will it break her spirit one way or another, absolutely not. Her focus is, “If I win, we could get publicity to help raise money at the fundraiser…”

If you’ve read this far I’ll tell you what I know about the poll I’ve linked you to below. The voting takes place like a reality TV show. I’m not sure how valid it all is, but there is a week of lots of voting. It ends January 11th at noon. Apparently you can vote many times before it stops you. And then you can vote every hour. So pretty much, if it crosses your mind, and you find Meghan inspirational, save the link and vote whenever it crosses your mind, until your device tells you to stop.

Regardless of the outcome, life will go on. And we will continue on the same missions we’re on right now.

#BeatingCowdens together

Inspirational Staten Islander Poll – Vote all the way at the bottom

Type A, and Then Some…

Published on September 18, 2016 by beatingcowdensLeave a comment

Calm down. Relax. It’ll get done. Take a breath. Why do you get so worked up?

These words could be spoken in several alternate languages for all the good they do for me. They make no sense. I mean, on a cognitive level I understand the words. And even the context. But, they hold little practical application for my life.

I am Type A. Yep. For it’s highs and lows, positives and negatives, I am a Type A personality. Although like everything in life, the transition between Type A and Type B is a spectrum, I’m still honest with myself.

16 Signs You’re a Little Type A

Go with the flow.

I have a dear friend who has promised to make a t-shirt that says,”I am Flo,” to guide me. She has 4 boys. (She used to be full on Type A. Now she shoves that in a drawer for most of the year, but the chaos sometimes still makes her cringe.)

I am high-strung. I am focused. I am task oriented. I am all about getting it done and getting it done well. I get pissed when other people fall behind on their jobs. I want order, structure, and routine. I make lists on top of my lists, while putting alerts in my phone to avoid missing anything. I have a hard time forgiving myself when I do.

I am a work in progress.

But to some extent, regardless of your personality type, I guess that’s true of all of us.

September is chaos. True, unequivocable chaos. Here, in this house. Here, in my mind. September is the toughest month of the year.

And apparently I’m not alone, because this article really cracked me up. September Is The Worst

If I could jump from August to October, it would be smoother. And I’m not a big fan of wishing my life away. But, transitions are especially tough on the Type A among us.

And, when you’re a teacher – well. That’s just a whole other story. But, for the sake of brevity simply organizing class lists for 25 classes and 500+ students while they are going through new admits, discharges, and interclass transfers is a feat not to be taken lightly. With the knowledge that 9/11 took place just a few days into the school year, I am always filled with a super sense of urgency to try to know who I have, and what their needs are as quickly as I can. Figuring out who has allergies, and who has an IEP is another struggle. Establishing rituals and routines for the classroom of a Type A teacher in one period a week is a bit taxing. Not as tough for the bigger kids, but those tiny kindergarten faces are still in shock. There’s no way they even remember my name, let alone where they should sit in my room. Substitute plans must be prepared, because emergencies don’t have the courtesy of always waiting till October. Copies of the schedule, printed, Emailed, and hung everywhere. Supplies, traffic patterns, expectations, all need establishing and reminding. That’s after the room is set up, and the bulletin boards are complete, and evening back to school night is squeezed into the agenda.

The agenda that is busting at the seams. Because, I know all you moms of multiple children may laugh at me, and whisper about how easy I have it, but that’s ok. Setting up the school and after school schedule for the child(ren) is a full-time job on its own. August looks so nice. The calendar lulls you into a false sense of security, as one by one the activities start-up again. And then all of a sudden you are trying to figure out when you will shower, or fill up the car with gas, or eat, or grocery shop. Never mind hair cuts! There’s the one time deals, like back to school night, and “returning parents swim meeting,” Every minute of every day seems to hold something. I know I have only one kid, but that doesn’t mean she can take herself to swim practice. Or pick herself up. Or that most of the time I can even leave her there, as lingering fears about her health are always present. And on the days she stays late at school for Drama, that’s a little easier, except when it crashes into a meeting at school. And there’s morning study, set up for the intense schedule for the 8th graders, as well as Friday night Youth Group for stress release. I think there’s a few minutes on Wednesday between 3 and 4 for sunshine. Oh, wait… groceries…

And to the left of me sits the Open House Schedule for High School. Still shaking my head as to how THAT happened, I am trying to figure out their days of the week. Because, I think we can make the Staten Island Borough Fair AFTER the swim meet that morning in October. There is the TACHS test, and the Specialized High School Test. Although I’m not really sure when there would be time to prepare. Unless, maybe there’s and app for that?

I haven’t even mentioned our health. Isn’t that just funny? It hasn’t rested one bit. And the most ironic thing, is people don’t realize you shouldn’t mess with a chronically ill Type A. Chances are good they like to excel at EVERYTHING. And in my case, I am willing to throw it at them. Hard.

Some time towards the end of August I had surgery to replace my implants. Far earlier than the 10-15 year life expectancy they had been given, one had moved, and it was time. That night as I lay recovering I picked up an Email from Meghan’s endocrinologist that we should raise her thyroid meds. Her levels were off again. Now raising the meds in and of itself every once in a while is not a huge deal I guess, but Meghan struggles with synthetic ANYTHING, and the fact that we were now 2.5 years post op from her thyroidectomy and she has had more dose changes than I have had in over 20 years can be unsettling. More unsettling was when I read to the bottom of the letter that he would be on vacation for over 2 weeks. So, here I was left to make a dose adjustment without clearing my list of “Type A mother of a chronically ill kid” questions, which, in case you wondered, are far more intense than the typical questions I ask. I scraped together the new dose from the closet, because I think we have Synthroid in EVERY dose known to man, and started her on it the next morning. My local pharmacy informed me that the insurance wouldn’t cover the new script even though it was a dose adjustment and we would have to mail order it. But mail order takes 2 weeks. And there was no telling whether she’d be on the dose for more than 6 weeks. But, whatever. I set my sights on getting a copy of the lab report to learn the magic thyroid numbers.

And then the real battle ensued. I tried to get it from one doctor. They couldn’t release it because they weren’t the “ordering” doctor, even though she had added labs to the order. I called the office of the endocrinologist. Twice that Monday. And again on Tuesday. I got a call back late Tuesday while I was on the phone complaining that I couldn’t see her labs through the “MyChart” system set up at the facility. The ‘ office said they’d send them. The MyChart people said they’d look into it. I waited.

Exactly a week. There were no labs in my mailbox. I called the endocrinology office again. I got someone who promised to send them and did. I called the MyChart people again. No answers, except that some one told me it was hospital policy not to allow parents access to records of their children ages 12-17.

REALLY???????????????????

Listen, while I may not like it, or even agree with it, I can almost understand that there are SOME situations where teens have the right to keep their records. But, this, this is THYROID blood work. She doesn’t want it. TRUST ME. She just wants me to give her what she needs to feel well. That’s it.

I processed all I could about this at the same time that I got ANOTHER bill from this hospital. The date of service looked familiar. I keep copious records. (Type A… :-)) And I was able to see that a bill for the DOCTOR, the PHYSICIAN Group, and the HOSPITAL FACILITY all billed, and were ALL paid to the tune of over $1000 for a 15 minute visit. And NOW, they were asking me for 2 additional Co-Pays. Notwithstanding the fact that we have 2 insurances, so our secondary picks up the co-pay at many of our visits. I called the primary carrier. They reversed the charges, but told me the billing practice was not illegal. Ok, then its immoral. And it preys on people who are sick, or who have sick kids. The insurance company also told me it was ON ME to call them when this happens. ONLY when I call them will they reverse the charges because as per my plan I am to pay one co-pay per visit.

Good, cause I needed something else to do.

By the first Friday in September I had had it. I found the CEO and Head of Patient Relations. I fired off a 14 page Email, 7 page letter, and 7 attachments about everything wrong at their facility.

I have since received 4 copies of the blood work by mail, and 2 phone calls asking it I needed it. One mail even came second day express. Of course it was addressed to my minor child, whose signature means nothing, and who is not legal to vote, or to drive, but who apparently in some alternate universe should be making health care decisions.

I received a letter from Patient Relations that they were reviewing my concerns. I’m not holding my breath.

That same Friday I tripped and fell and did some number on the pinkie toe of my right foot. A clear fracture, although there is some debate as to whether it is displaced, and it will warrant another opinion. The 3 hours I spent visiting the last podiatrist was a waste of my time. So, I am in a post op shoe for some infinite amount of time going forward. Because there is little chance in heck the right foot is getting into a sneaker any time soon. Good thing it’s the perfect month to “take it easy on the foot.” (Insert sarcastic grin here.)

Last Saturday the vocal therapist told me that I have one irregular shaped nodule on my left vocal fold. It still gets to be called “benign appearing.” I was also told I have “significant vocal fold atrophy secondary to premature aging.” Well, that sucks. Because I thought atrophy took place when you didn’t use something. And oh, I use my voice. And the premature aging, well, that’s likely thanks to the 2012 hysterectomy that was a necessary preventative move. It all comes back to Cowden’s somehow.

Over the weekend I noticed that the knots from the implant exchange were getting irritated. This doctor like all the others had been warned, I don’t dissolve stitches. But, as wonderful as he was, he also needed to be shown. I clipped one of the knots myself and there was immediate relief. Then I second guessed myself. By Monday the site I hadn’t touched was red and warm, while the other was healed. I took a photo and sent it to the PA. Come in tomorrow she said. So Tuesday afternoon, my surgical shoe and I trekked into Manhattan. She pulled the stitches, read a low-grade fever, and marked the redness. She scripted me with 5 days of antibiotics but told me to wait 12 hours. Wednesday morning I sent her a photo. “Looks better, right?” I said. “Start the antibiotics,” was the reply. So, I did.

Friday, Meghan made it to morning swim practice. 5:15-6:30AM. I dropped her off, and headed home to shower. I met her with breakfast. We stopped off to drop her bag, and were at her school by 7:22. I picked her up at 2:20 and she made afternoon practice. I was tired. She made it to youth group too. I was in bed by 10.

Friday I spoke to the endocrinologist – finally. I really do like him, but I think we’ve established now that I can’t wait 4 weeks for communication. I don’t think it will happen again. We talked it through. Wednesday the 28th we’ll head to the hospital lab to repeat. We are going there because then there is no chance for anyone to blame a variation on a different lab. But, that’s ok cause there is that free hour on Wednesday… He will call me on the 30th with the results. I believe him.

I also believe that when I take his call on the 30th I will have a tall glass of wine celebrating the END of September.

This morning Meghan woke up with a sore throat. She had to skip practice. That’s always a tough call for her, but the right one. She’s beating Cowdens like a champ, but part of winning is knowing when to slow it down.

Slow it down.

Hmmm.

I am so wrapped up in the have-tos, and the just getting by, that so much life is just on hold. We have to gather enough spoons to save for something fun. Anything. But there are no spares. Especially not in September. (If that last paragraph confuses you – you can Google The Spoon Theory)

Sometimes, when I have a minute, I think about calling some of the friends I miss a lot. But, I don’t. They have crazy wild lives of their own. My fears and anxieties and worries exist, and so do theirs. But for some reason right now, they largely exist separately. I miss them. And I am forever grateful for Social Media and the few minutes I can take, at swim practice or the doctor to catch up, at least on the surface.

I am super-blessed with a husband who not only tolerates my Type A, but works with me. He cleans, and cooks, and remembers to make me laugh. A lot. Often at myself.

I am three years deep into nutritional cleansing that I have no doubt is keeping me fueled for this crazy life. One day soon I intend to find a way to shout from the rooftops and share this secret arsenal of nutritious fuel with the world. Because without it, I’m not sure exactly where this Type A, broken toe, infected boob, woman, who needs a tour guide microphone to teach her classes would be hiding.

Instead of hiding, we remain,

#beatingcowdens

forever!

Yep, it’s broken. But, not me… Nope, not me!

Published on September 5, 2016September 5, 2016 by beatingcowdensLeave a comment

Friday, I tripped over something in my hallway. I wasn’t looking. I ended up against the wall, screaming all sorts of words that I am sure were inappropriate for my daughter to hear. But, for about 60 seconds I let them go. I screamed while the pain was too intense for me to breathe. I screamed about my stupidity. I screamed with certainty that the foot, or at least the little toe, was broken. Because it was that kind of pain. The kind that makes you sure.

After some ice, I tried my best to jam it into a sneaker. Less than 2 weeks post op from the implant repair, I was not interested in losing my ability to walk to relieve stress. However, my efforts were in vain. That toe wasn’t even close to making it into my sneaker. No way. No how.

I took Meghan to swim practice, and called my husband to meet me. I figured when he tagged in I could go for an x-ray. Just on the off-chance it was more than the toe. Because every memory I had was of “you can’t do anything for a broken toe,” I was hoping…

I kept busy in the hall above the pool. I had my laptop and all I needed to continue to pepper NYU with what I really feel are immoral and unethical billing practices. Along with 2 weeks worth of a records retrieval nightmare, where I could not gain access to Meghan’s lab work from earlier in the month while her doctors were on vacation, and the online system was a classic, epic failure.

I propped the foot to the side, and used the hotspot on my phone to send the 14 page document I had compiled off to the CEO of NYU and the head of Patient Relations. Then I copied one of her doctors, a lovely woman who I doubt has any clue how these things are done.

When I finished that I called on a bill I had just received. Same doctor for Meghan. Two dates of service. No evidence of my secondary carrier billed. My $30 copay times 2 requested as payment. I asked, innocently why the secondary isn’t mentioned. I was told they didn’t pay. Didn’t acknowledge the claim.

I made my notes, to follow-up. I did. Amazing what technology will do me. This facility was paid THREE times for the January visit alone. A visit totalling about 20 minutes generously. They COLLECTED over $1,000 from the three separate claims. And they were STILL hitting me for money. My older, weaker self would have paid. Just to shut them up. I’m not that person anymore. I am strong. I am tough. I am morally and ethically strong-minded. I will pay what I owe. The rest I can do with as I decide, not them.

They are sneaky. They prey on those who can not figure this out. I am developing a spread sheet I will have to enter all data into to stay on top. But, I will. And when I have enough I will expose them. I will do it for the people who can’t. Because some things are just flat out wrong.

I thought of all this as I found my way in the x-Ray machine Friday evening. The tech was sweet. She was kind. We laughed. Without saying anything, she said it all. “I think you might want this CD. Why don’t you just wait for it?” Sure…

An elevator ride up I was informed of a displaced fracture of my right small toe. They can’t be sure if it’ll need to be properly set. I need to wait about a week. Until oh, I don’t know, the FIRST DAY OF SCHOOL?

Saturday 9/3 - I did manage a polish change! — Saturday 9/3 – I did manage a polish change!

I spent Saturday morning in vocal therapy. Apparently she’s waiting for confirmation that I don’t actualy have nodules, but rather some type of vascular lesion on the left vocal cord. Tiny. Benign. Therapy the same. Prognosis not quite as good in terms of self-resolution.

Stitches sticking through the streri strips on my newest boobs, a boot on my right foot while I track down a doctor. A voice that may work, or not…

School starts for teachers tomorrow. A hot mess of me headed in to meet my schedule.

I am bent, bruised and strained. My toe may even be broken. But, not me. I won’t be broken. Ever.

It’s mind over matter in so many ways. And this mind. Well, it matters. I’m all over it. #beatingcowdens is not for the faint of heart, but we’ve got this.

For right now, with a little help from the Captain… 🙂

Set Up Surgery on Safari – check

Published on August 20, 2016 by beatingcowdens7 Comments

Last Tuesday, on Meghan’s 13th birthday, we woke early and headed to the airport for what has become an annual family vacation. Disney World is a “happy place” for all of us. Despite crowds, and heat, we seem to be able to locate so much magic there. Plus, it’s not here.

I like it here. In my house, with my family. But being “here” in a broader sense means doctors and tests, and appointments and procedures. And traffic, and waiting. And bills, and phone calls, and all sorts of obligations that often keep me tied to my desk chair.

In Disney someone produces allergy safe meals for us. In Disney there is no driving. In Disney there are fireworks and parades and shows. While we are in Disney Mom watches the dogs and the house.

Those 8 days designed as a respite. A safety zone. A doctor free area. And we look forward to it every year.

This year was even more special because Meghan brought a friend. She got to bring a kind, compassionate, witty young lady who had been by her side through some ups and downs the past year. There is not a long list of people who Meghan trusts enough to take into confidence, and I can’t say that I blame her. But, this young lady has similar loyalty standards, and held her composure as Meghan threw some tough stuff at her. Meghan is forced to think about things and process things that are not even remotely acceptable to have to deal with at her age. Most peers are overwhelmed. Many shy away. This young lady did not NEED Meghan as a friend, they CHOSE to be friends. As different as they are, they compliment each other nicely. So we set off on our adventure this year as a party of 4. The Ortegas plus one!

Once we found our groove, (adding a wheelchair takes finding a balance) we were off and running. Great food, lots of laughs, and the highs and lows you’d expect from two spunky teenagers.

I was distracted Friday when my cell phone rang, while we were on the Safari at Animal Kingdom. I should have seen the NY number and known what was coming. But, I answered quickly.

It was my plastic surgeon’s office. The one who had told me they could fix my implant some time in the spring… well, they were offering me a spot on August 19th.

If you don’t have the back story on this I’ll give you the quick version. After a double mastectomy in March of 2012, I opted for immediate reconstruction. I was very pleased. Then in November of 2012 I was in quite a car accident. I took a good hit to my totaled Hyundai. The implants were intact, but likely never quite the same. By the summer of 2015 I had been experiencing some pain and discomfort on the right. I went back to my plastic surgeon in November of 2015. She told me the right implant had fallen a bit, and I should have (non-emergency) surgery to pull it back up. Except, she was no longer accepting my health insurance. The year that was had Meghan in the OR I believe 5 times. I struggled to get the courage to call the new plastic surgeon. I was annoyed to have to do all this again so soon. The initial estimate on the implants was 15 years. This was under 5. I finally got an appointment with the new plastic surgeon a full year later, in July of 2016. He concurred that a surgical procedure to “tighten things up” was a good idea, and that I could schedule at my convenience. So, I tried to get it scheduled for the summer. Then I tried for October when we have a few days off. Then I tried for December… and before I knew it I was looking at spring break, almost another year of what had transformed from pain, to just an odd sensation, all the time.

I listened as I was told I could have the date one week away. I looked around at the animals on the African Safari. I tried to keep my conversation low enough to make sure the girls, and no one else on the vehicle was following along. I promised to return the call in an hour.

I hung up and managed to share the story with my husband. Then I called my Mom. Then I called the plastic surgeon back. “Let’s do it.”

So the following Monday was spent ducking away to make phone calls to set up pre-operative appointments. Because the plane was due to land at midnight Tuesday. I needed blood drawn, and a physical Wednesday in order to hold the spot.

Tuesday we left Disney. The step count on my FitBit was over 142,000 I had covered over 62 foot miles. I was tired, but happy.

We did have a great week, and while I was bothered on some level that the surgical planning creeped in, I am skilled at managing many things from my cell phone. And, the thought of getting all that straightened out months ahead of schedule was exciting.

Tuesday it rained. In NY and in Florida. There was lightning. There were delays. Lots of them. Our plane landed well after 1 am. I hit my bed hard at 3 and was on the bus to NYC for the lab work by 9. After battling NYC traffic there and back, I went for the physical. Passed, and papers faxed to the plastic surgeon by 4:00. Success.

Life moves quickly. We have to keep up.

The call came Thursday to be at the hospital at 6 AM Friday. While I am not a morning person, only the surgically experienced would realize that is like hitting the jackpot. It means you’ve got first case. And that is a giant win.

There was little time to share the plan with anyone.

Yesterday morning I had bilateral implant repair between 7:30 and 10 AM. I slept till 1, had some ginger ale and crackers and was home by 2:45.

Last night I laid in my bed catching up on Email and I caught one from Meghan’s endocrinologist. The thyroid numbers have gone a bit off again. He wants to play around before repeating labs in 6 weeks.

Medication readjusted. Again. Illogical. Like so many other things.

Apparently #beatingcowdens involves scheduling surgery on an African Safari and readjusting medications hours post-operatively.

We’ve got this.

Thank goodness for our time in the “Happiest Place on Earth.”

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.