Some days I look in the mirror and wonder who that lady is. Some days I hop on a scale chasing numbers that were there 30 years ago. Some days I am self-conscious about the gray hair and crows feet that stare back at me from the mirror. Some days I work extra hard to cover the age spots taking over my once fair, plain skin. Some days I am harder on myself than anyone else would be.
Today I looked at this photo from yesterday. I cringed a bit. I scrutinized as only the subject of a photo can.
Then I stopped.
Because the truth is, I am not the me of 30 years ago. Or 10 years. Or 5. Or even 1.
That is where it goes wrong sometimes.
It is so easy to tell my daughter to be present. To forgive herself. To not worry about how she thinks she compares to the standards of a flawed world. To not sweat the small stuff. But, sometimes I am a giant hypocrite.
Today I forced my own hand.
You see, this is 49. There is no living in this moment again. I can be miserable, or I can be content. In reality, if I have learned anything, I have learned that is one of the choices that changes everything. And it really is a choice.
Everyone you meet fights battles you know nothing about. And even when you think you share those battles, you only know what they choose to share with you.
Life is heavy. We can’t talk about our fears, our worries, and our sadness all the time. We can’t ask for others to fully absorb the weight of what we carry into each day. We can’t compare levels of difficulty. And we can not ask the world to adjust for us. Some of us are exhausted before the alarm goes off. But we still need to show up and make it happen.
So what can we do? I think we have to acknowledge where we are, and where we have come from. I think we have to offer gratitude to the higher powers in this universe. I think we have to carry a bucket of grace wherever we go, drinking from it when we are thirsty, sharing it when others have none, and allowing our own to be refilled by others.
But who am I? I am no more or less than you.
I am stream of consciousness writing,
I am 49.
I am wrinkles and declining vision.
I am scars and cellulite.
I am always prepared with a bottle of hair dye.
I am always hungry for chocolate and thirsty for caffeine.
I am sneakers and jeans and T-shirts.
I am quiet until I am not.
I am a long history of medical drama.
I am a professional at surgical recovery.
I am an athlete inside of a body that doesn’t know it yet.
I am a daughter, a sister, a granddaughter, a niece, a cousin, and a friend.
I am a wife.
I am a mother.
I am an absolutely ferocious beast at protecting my girl, her health, her rights, and her heart.
I am a sentimental fool.
I am a forgetful mess.
I am a nervous wreck.
I am an advocate.
I am a rare disease patient.
I am a medical biller on the side.
I am a teacher.
I am a life-long student of life.
I am one who loves deeply.
I am loved.
I am a believer in angels.
I am sure our loved ones never leave us.
I am ok with sloppy dog kisses, as I try not to overthink joy.
I am not 19, or 29, or 39, and I’m glad.
I am confident that lessons learned make me a stronger version of myself.
I am 49.
And I promise to work every day to be my best self.
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!
Gratitude is a practice I try to engage in regularly. There is so much to be grateful for. My child is thriving despite countless challenges. I know of too many parents who can not say the same, by no fault of their own.
This May of 2022 my 18-year-old marked her 20th surgical procedure. We are acutely aware of PTEN, Cowden Syndrome, and its ramifications. Some could say our whole purpose here is PTEN Awareness.
The challenge though is to raise awareness outside of our diagnosed population and our inner circles and spread it to the medical community so testing diagnoses come earlier. The humanization of this condition is critical. The appreciation for its unique challenges is essential. This has to begin with empathy from front office staff, scheduling appointments for real people, trying to hold down real jobs or maintain real school schedules, and keep the “normal” aspects of life together while simultaneously navigating the screening and surgeries inevitably required of Cowden’s patients.
The realization that even within our “rare” diagnoses, no two patients seem to travel the same road needs to provoke the medical community to consider our individuality within the anomaly of a 1 in 200,000 disorder. We need more empathy and less sympathy. We need creative solutions to unique problems. We need people who believe us instead of “patient blaming” and shaming us for symptoms and pain that are poorly understood.
In short, #beatingcowdens involves a combination of “Gratitude, Grace, and Grit.”
I tend to wear T-Shirts with short sayings to keep me motivated through each day. I am fairly sure most people don’t see or read them, but in reality, I choose them more for me anyway.
Monday I had my “Gratitude, Grace and Grit” shirt, very purposefully selected as Meghan, Ella and I loaded ourselves into the car for a contrast MRI/MRA of the vascular tumor in her right thigh, and presurgical testing for that same tumor. A lifetime of surgery and less than stellar interactions have left their mark on my girl. IVs and blood draws hold some of the most intense trauma and there have not been enough consecutive positive experiences to make contending with them any easier.
The anticipation on the 35-mile/ way too long in traffic/ ride was palpable as always. Yet, we found things to chat about that made me simultaneously proud and sad. We always want to remove the hurt from our children. She is quite a stellar young woman, stretching her wings at college, and beginning to fly. We stopped a long time ago wondering what life would have been like without this mutation. In our hearts, we know it shaped us, separately and together.
We are unapologetically Christian. I was raised in the Lutheran Church, an ELCA congregation where I was baptized, confirmed, married, and had Meghan baptized. My beliefs are firmly rooted among other things, in this verse from Ephesians 2, verse 8: “For it is by grace you have been saved, through faith—and this is not from yourselves, it is the gift of God…” Her faith journey had more twists and turns than mine, as changes at critical points in her childhood left her often in a faith freefall. But, my brother-in-law an ELCA minister kept the door open for her always, and before she left for college she was confirmed in the faith of her baptism, one she had struggled to find her path to, but now embraces.
We blasted “Spotify” at times on the drive, and multiple times found our way back to this song, https://www.youtube.com/watch?v=q8anLMKB9N8 “See Me Through It” by Brandon Heath. Chuckling as we repeated the line “When the sky falls, who am I gonna call, the one who put it up there in the first place!”
We have learned to make our own fun, and to make our memories valuable. We’ve learned to use the time we have together and appreciate each other where we are and with all we have. It’s been the most important lesson and has allowed our relationship to develop as ironclad.
The MRI was long. The IV was painful. The pre-surgical testing was annoying. The blood draw was difficult. Those are the uncomfortable sentences people don’t want to hear. We left the hospital in exactly enough time to smack into the start of rush hour.
However, the overall story here, this time, is one of extreme gratitude. The MRI was scheduled at the exact time we needed it, organized by the incredible Interventional Radiologist who is new to us, but seasoned and skilled. It leaned right into the pre-surgical appointment and I was utterly grateful for the man who promised to get it all done in one day, and then personally followed through.
That Doctor. The journey to him was one where all the stars aligned. The orthopedist who is utterly well-respected by both of us and has been a regular in our rotation for a decade knew we needed a new team for this. That orthopedist, trusted by both of us, sent us to a hematologist who has an interest in vascular malformations.
That hematologist had us at hello. Literally. It was days before Meghan was to leave for her freshman year at college. The pain was worsening. There was no time to get to see her in person. So she consulted. Via telehealth. For over 90 minutes. And she prescribed medicine that took the edge off. And she stayed in touch. And titrated doses. And called me back. And emailed. And cared.
She gave us a list of doctors to see and suggested the Interventional Radiologist. And more magical than that, she made sure that we got to see 5 doctors in 2 days during the VERY short window Meghan was home for Christmas. All of them were worth it. One of them was the Interventional Radiologist who we desperately needed.
Meghan’s options were not encouraging. The direct stick embolization in 2019 was nothing short of a disaster. This tumor was deep. Excising it was advised against by the orthopedist as he could offer no promises after cutting through that much muscle that the leg would ever be the same. But, instead of pushing Meghan into a box, this doctor listened, and he thought. And he treated her like a human. When we went into his office, her images were already up, on a huge screen. He looked at me and told me that Meghan’s tumor must hurt. And while I understood on whatever level a bystander could, the extreme pain she was in, I so desperately appreciated the doctor who was advocating for my girl. SHE must have felt a relief even I could not fully understand.
Here in front of her was a real doctor, expressing how oddly placed her tumor was. Explaining how and why the pain was often just unreal. And, offering to try something new. Something outside the box. Because he wanted to help. He connected already with the orthopedist we love. He mentioned consulting with other hospitals and was willing to talk to anyone, to literally move mountains to try to help. He suggested cryoablation-freezing the tumor out. And we were intrigued because it made sense. And, it just might work.
We talked about the week of May 16th as a target date. It was the week after final exams and made the most sense. They made it happen. This doctor consulted, studied, game planned, changed plans, kept Meghan and I informed, and answered any question she had, and then some. Gave her his email. Called her at college. He treated her like a real, actual important human being. A whole person.
And so Wednesday morning, May 18th, we walked into the hospital at 6:45 AM. By 8:45 she went one way and Ella and I another. The doctor called me mid-morning to update me on the transition. He knew I’d be worried. Then, almost 4 hours later Ella and I met him in the hallway as he showed me pictures of the tumor, then the area where the tumor had been prominent. Then the site before and after the cryoablation. He said from his seat it went as close to plan as it could have.
I wanted to hug him. I doubt he had any idea how much his efforts mean. I doubt he truly knows that being treated like a human was so strange, and so utterly amazing.
Maybe this PTEN awareness month we will reach another doctor who wants to learn. Maybe we will reach a doctor who wants to think outside the box, and will understand that it is sometimes critical that they do so. Maybe we will reach a person who schedules appointments who will understand the desperation in our voices when we need to schedule that next one after work. Maybe we will reach someone who needs to hear this message and will use the knowledge to impact a patient in a great or small way. Maybe they will leave us a message here and let us know.
Or maybe the very special Interventional Radiologist, and the hematologist who took the time and the risk without a face-to-face, and the orthopedist who never ever gives up will see this and know they have made an epic difference. Maybe that is enough. Because we will never be able to repay them, and no kind word is ever wasted.
We are still in the early stages of recovery. We have no idea what the long-term response will be. But, we have opened a tiny window and allowed HOPE to creep back into our worlds, and that, well, that is everything.
Gratitude, Grace, and Grit. #beatingcowdens takes all three and then some.
I cried this weekend. Not just the tears down your face from a sad movie cry, but the gut-wrenching sobbing cry that leaves your head pounding and your eyes swollen shut. And, it wasn’t just once. It was at least three separate times, and the weekend isn’t over yet.
I wasn’t going to write about it. I mean nothing specifically terrible happened. As a matter of fact, I drove 130 miles each way to watch my girl swim this weekend, and to give a little love to my second best girl, Ella.
I could have stayed in those stands forever. It was the place I felt the most purpose, and a heart full of pride. She has swimming goals. But my mom goals for her have already been exceeded. There are kind teammates, friends who laugh together. There is a boyfriend, and a best friend, just attentive enough that I know they have her back, and Ella’s too. School is exactly as hard as it should be, and she landed comfortably on the Dean’s List, far exceeding my own first semester.
But the weekend wasn’t all there. And truth be told there are entire weeks that have to happen before the weekend.
I was in the middle of ugly cry three this afternoon when it crossed my mind it was time to write.
I started this blog almost ten years ago with the promise to myself, and to Meghan that I would, with reasonable privacy precautions in place, record a “real” story of life with Cowden Syndrome. At least, our real story. Over the last ten years, I have come to “know” too many amazing families that each deal with their own real story. I have laughed and cried and prayed over miles and continents and oceans with so many of them. There are not two of our stories that are the same. Yet, they all have value. And if ours is the story chronicled here, I deplete its value by hiding the fact that I ugly cry.
I have been repeatedly humbled by the number of people who reach out to me and thank me for telling our story. I often wonder why people even read. But I would be lying if I did not include these days. And I do not like to lie. As grandma used to say, “I haven’t the memory to be a good liar.”
The truth is this. Even ten years into this diagnosis, I get overwhelmed. It is overwhelming. Sometimes feeling like you are at the bottom of the mountain, all day every day is utterly exhausting. To constantly feel like you might be missing a scan, like you are behind on an appointment, planning a surgery, and cramming anything else into the cracks in between work and sleep can leave you burned out. I swear some days just picking up the phone to schedule something triggers PTSD. And for that, if you know, you just know. Because every office thinks they are your only office, and none of them seem to comprehend it is through your JOB that you have insurance.
Truth be told, it doesn’t all have to be Cowden things. Sometimes “regular people” things seem overly complicated and just generally hard. And when you mix together a rare, poorly understood disease and some “regular people” things, too well sometimes you just…ugly cry.
Regular readers know that I suffered a foot injury while teaching 3 years ago. And it has complicated my life in a “regular people” way, that if it was my only medical issue it could potentially be all-consuming. The return to in-person teaching this year has left my body feeling like I jumped off a steep cliff with no parachute. My body literally feels like it is in a free fall from the hours of standing upsetting my balance and causing pain up my leg, in the opposite knee, and in both hips. So, adding to the fact that the school day itself, double-masked and peeling hands from sanitizer, literally leaves me “stick a fork in me” done, I have restarted physical therapy, added a new orthopedist, been working through pain medications one at a time, and recently added acupuncture to the “keep me functional and sane” regimen.
Friday, the battle over this, most of which I will be deliberately vague about the extent of, took me to a whole new low. I am floundering. There is nothing much to say to me, so I have skillfully pulled back from most friends and family. I must press on at all costs. So I keep my head down and forge ahead. But Friday I found myself on the floor of my kitchen with two well-meaning dogs slobbering all the skin they could find while I simply lost it.
Then, I shook it off as best I could and planned and laminated new lessons like it is year one teaching, not year 25. Well, because essentially as an educator this is year one. Nothing is like it was before. Or, well, maybe it is still year zero. Either way, this whole toss it up in the air, and see where it lands system we have going here involves new plans. And new plans take time. And migraine medication.
I leave a tab open on my computer for everything I am contending with at the moment. Sometimes it freezes the system and I have to reboot. A metaphor? Probably.
One of those tabs was USPS tracking. I paid $16 to mail a letter, priority, certified, AND return receipt because I NEEDED a signature. The signature card arrived, with the number “C19” and no name. I can only hope that when I need it, someone can confirm the identity of “C19.”
Another tab is for our mail order pharmacy, my constant nemesis. One medication of Meghan’s which was canceled for no apparent reason on 12/23 took me through 4 phone calls to them and 4 to the doctor’s office before I finally emailed the doctor directly Thursday evening. This is a really cool hack Moms of chronically ill kids figure out. You eventually pick up on the email handle used at hospitals and you realize despite the use of “portals” where front-end staff screen your correspondence, most doctors get their own email. So, Friday morning he sent in a script himself. Except, it went into the wrong “pocket.” There are different areas for different types of scripts with different authorization processes. So, I regularly check all the “pockets” and there it was, in one where it was going to be denied. Again.
To make it even more interesting, when I had logged in originally I couldn’t see any of her meds. Or Felix’s. So I logged back into her own account, which she had authorized me to use, and which she had consented to merge with mine when she turned 18. When we started this on 12/23 there was plenty of medication. It is now dangerously low. I placed a call to the pharmacy. 97 minutes, and 4 representatives progressively up the food chain later, I had successfully gotten the medication transferred and expedited, but not yet processed. That will be a wait and see… And, the linking of the accounts, after being told it wasn’t possible, and essentially that I was nuts, the best I got was a “ticket” put into tech. I changed all the passwords to match so when I toggle three accounts I can move faster. When the final woman asked me to hold for a survey I said, hopefully for a recorded line, but simply because I had to get it out, “No, I can’t because I will not give me the opportunity to specify how many ways each of the 4 of you have been unable to help.”
You see I had already been on with them the day before over one of Felix’s medications which they told me was covered for 60 out of every 90 days. I still haven’t wrapped my head around a reason, other than cost. So, I found it cheap enough to buy, through Amazon Rx. Yep. That’s a thing. When Walmart called me, they wanted insurance information, because “this script is well over $1200.” When I gave her the Amazon RX code she actually gasped. $131. Should be in Tuesday. I will find the time to get to New Jersey to get it.
After the orthopedist. Because the acupuncturist said I should probably ask for an MRI of the right knee when she was treating my left foot… I was hoping the lidocaine patches would do the trick… not so much.
And the dentist is Wednesday. For a tooth I am sure I have cracked. Because grinding my teeth is just reality.
And physical therapy is Thursday. Just because.
Oh, and “you’ve got mail” just informed me FAFSA (hours of my life for no reason at all) is due again soon.
And, the driver safety course is expiring.
The notepad beside my computer reminds me to make time to call insurance to see if they can authorize Meghan’s MRI now, so I can schedule it for May at the facility adjacent to the hospital, not at all conveniently located on Long Island where the new Interventional Radiologist (who actually seems like a kind, decent human who will eventually need his own post) will have a go at the vascular malformation butting up against the nerve bundle in her thigh.
We’re overdue for dermatology. The one we had left, and I am in search, but time ticks by. I need a visit to the ENT for the fluid in my ear, the psoriasis in both ears, and the migraines that are relentless and likely sinus-based. She’s due for an abdominal sonogram and a colonoscopy. And, actually, so am I. But at least I have a GI in place for her. That’ll be early July, hopefully after she is healed from the IR procedure. There are times I wonder when she will get her first job. And other times I know that BEING her is a job most people would have quit. I can only hope her first employer understands when there is no job history.
On Sunday night I clean up my notes from a week’s worth of phone calls. I do my best to make a new list to stay on task for the week ahead. I try to keep myself honest in getting things scheduled, even when I know some will continue to balloon into bigger and seemingly insurmountable problems.
On Sunday night I also reflect. And that is where I take the time to forgive myself for the ugly cries. I ground myself in the knowledge that even though so many have it so much worse, the parallel truth is that my pain, and my being overwhelmed is equally valid. No more, no less. And I am entitled to my time to yell and scream and carry on.
On Sunday night I pick myself up, dust myself off, and remember that I am loved. And then I make sure I allow an hour of TV with two doggies and the man who loves me unconditionally, ugly cries and all.
Before Meghan left for college last August I worked to think of creative things to send with her. One of the things I decided on was a playlist. Sure, we have some overlapping music tastes, but it was not to be about that. It was for songs that she would be able to listen to and imagine me either telling her or singing alongside her. Since I am a TERRIBLE singer, a playlist was definitely the most kind and efficient option.
I listened to every song over and over before declaring it a fit. Then, I listened to the playlist, first in order, then on shuffle for weeks before I “gave” it to her. We have added songs through the months and even taken one or two out. But now it seems like a chronology. Some songs that will be life advice forever, and some that were epically important as she settled away from home for the first time
“The Gambler” Kenny Rogers
“You’ve got to know when to hold ’em Know when to fold ’em Know when to walk away And know when to run You never count your money When you’re sittin’ at the table There’ll be time enough for countin’ When the dealin’s done…
2. “Humble and Kind” Tim McGraw
“Don’t take for granted the love this life gives you When you get where you’re going don’t forget turn back around And help the next one in line Always stay humble and kind…”
3. “I Hope You Dance” LeeAnn Womack
“…I hope you never fear those mountains in the distance, Never settle for the path of least resistance, Livin’ might mean takin’ chances, but they’re worth takin’, Lovin’ might be a mistake, but it’s worth makin’…”
4. “Here Comes the Sun” The Beatles
“…Little darling, I feel that ice is slowly melting Little darling, it seems like years since it’s been clear
Here comes the sun do, do, do Here comes the sun And I say it’s all right…”
5. “My Shot” Lin-Manuel Miranda (Hamilton)
“…I’m a diamond in the rough, a shiny piece of coal Tryin’ to reach my goal, my power of speech: unimpeachable Only nineteen, but my mind is older These New York City streets getting colder, I shoulder Ev’ry burden, ev’ry disadvantage I have learned to manage…”
6. “I’ll Stand by You” Pretenders
“...I’ll stand by you Take me in, into your darkest hour And I’ll never desert you I’ll stand by you I’ll stand by you…”
7. “Have it All” Jason Mraz
“…May you be as fascinating as a slap bracelet May you keep the chaos and the clutter off your desk May you have unquestionable health and less stress Having no possessions though immeasurable wealth May you get a gold star on your next test May your educated guesses always be correct And may you win prizes shining like diamonds May you really own it each moment to the next
And may the best of your todays be the worst of your tomorrows And may the road less paved be the road that you follow…”
8. “How They Remember You” Rascal Flatts
“…You’re gonna leave a legacy, no matter what you do It ain’t a question of if they will It’s how they remember youDid you stand or did you fall? Build a bridge or build a wall Hide your love or give it all What did you do? What did you do?Did you make ’em laugh or make ’em cry? Did you quit or did you try? Live your dreams or let ’em die What did you choose? What did you choose? When it all comes down It ain’t if, it’s how they remember you…”
9. “Best Day of My Life” American Authors
“I had a dream so big and loud I jumped so high I touched the clouds Wo-o-o-o-o-oh, wo-o-o-o-o-oh I stretched my hands out to the sky We danced with monsters through the night Wo-o-o-o-o-oh, wo-o-o-o-o-ohI’m never gonna look back Woah, never gonna give it up No, please don’t wake me now…”
10. “Rise Up” Andra Day
“…All we need, all we need is hope And for that we have each other And for that we have each other And we will rise We will rise We’ll rise, oh, oh We’ll riseI’ll rise up Rise like the day I’ll rise up In spite of the ache I will rise a thousand times again And we’ll rise up High like the waves We’ll rise up In spite of the ache We’ll rise up And we’ll do it a thousand times again…”
You get the idea… and a few of my favorites down further in the list…
15. “The Comeback” Danny Gokey
“…There is no mountain you can’t face There is no giant you can’t take All of your tears were not a waste Your one step awayJust when they think they’ve got you game set match Oh here comes the comeback…”
23. “Fight Song” Rachel Platten
“…This is my fight song Take back my life song Prove I’m alright song My power’s turned on Starting right now I’ll be strong I’ll play my fight song And I don’t really care if nobody else believes ‘Cause I’ve still got a lot of fight left in me…”
29. “Good To Be Alive” Meghan Trainor
“…It feels good, don’t it? Living your life in this quick moment And you never ever think it’s gonna go away, but I swear I know you’ll wake up one day and say Yeah, I got things to do (you’ll say) Yeah, I got mountains to move And it ain’t about how sad it could be It’s about how good it should be Come on, sing…”
32. “Let it Be” The Beatles
“When I find myself in times of trouble, Mother Mary comes to me Speaking words of wisdom, let it be And in my hour of darkness she is standing right in front of me Speaking words of wisdom, let it be…”
35. “Defying Gravity” (Wicked) Idina Menzel and Kristin Chenoweth
“…I’m through accepting limits ‘Cause someone says they’re so Some things I cannot change But ’til I try, I’ll never know! Too long I’ve been afraid of Losing love I guess I’ve lost Well, if that’s love It comes at much too high a cost!…”
40. “Colors of the Wind” (Pocahontas) Judy Kuhn
“…You think the only people who are people Are the people who look and think like you But if you walk the footsteps of a stranger You’ll learn things you never knew, you never knew…
How high does the sycamore grow? If you cut it down, then you’ll never knowAnd you’ll never hear the wolf cry to the blue corn moon For whether we are white or copper skinned We need to sing with all the voices of the mountain We need to paint with all the colors of the windYou can own the Earth and still All you’ll own is Earth until You can paint with all the colors of the wind”
42. “Do Something” Matthew West
“…I’m so tired of talking about How we are God’s hands and feet But it’s easier to say than to be Live like angels of apathy who tell ourselves It’s alright, “somebody else will do something” Well, I don’t know about you But I’m sick and tired of life with no desire I don’t want a flame, I want a fire and I wanna be the one who stands up and says “I’m gonna do something”…”
45. “Magnify” We are Messengers
“…God be greater than the worries in my life Be stronger than the weakness in my mind Be louder let your glory come alive Be magnified…”
51. “Stand By You” Rachel Platten
“…And oh, truth I guess truth is what you believe in And faith, I think faith is having a reason And I know, know love, if your wings are broken Borrow mine so yours can open too’Cause I’m gonna stand by you Even if we’re breaking down We can find a way to break through Even if we can’t find heaven I’ll walk through hell with you Love, you’re not alone ‘Cause I’m gonna stand by you…”
This one was added recently after Meghan brought it to me. It seems she has been paying attention to her father and I all these years….
56. “Like My Father” Jax
“…I need a man who loves me like My father loves my momAnd if he lives up to my father Maybe he could teach our daughter What it takes to love a queen She should know she’s royaltyI need a man who’s patient and kind Gets out of the car and holds the door I wanna slow dance in the living room like We’re 18 at senior prom and grow Old with someone who makes me feel youngI need a man who loves me like My father loves my mom
I need a man who loves me like My father loves my mom…”
So, with few words of my own, and many from talented musical artists, we remain
This is the day when we often sit and think about sad things. It is a day we often reflect on all the reasons we can’t wait to be done with the current year, wishing better for all in the next. I have not blogged much this year. Mostly because I don’t like to write when I am in a negative headspace. You can infer from that whatever you’d like…
So as I sat down to wish away 2021, I remembered many years ago when Meghan and I used to practice ‘flip it.’ And while sometimes, yes, it was a matter of literally flipping things “the bird,” often it was a lengthy conversation about how we can take the unfortunate circumstance and flip it to our benefit, at least mentally.
This is a careful process because we abhor toxic positivity. Some things just stink. The end. Little is more frustrating than dealing with another appointment, injury, procedure, test, and so on while having someone tell you to look on the “bright side.” However, we have found through years of digging reflectively that life can hold “parallel truths.” This was easier for us to process. The truth that upsetting and sometimes painful or tragic circumstances exist and need validation can be accompanied by other things happening simultaneously that are full of blessings.
2021 for us was definitely a year of Parallel Truths. While covid changed, abbreviated, or eliminated so many things, we grew. We grew as a family and individually. We grew in our faith. We grew in our resilience. We grew in our convictions, and most importantly our love and respect for each other. While I can say I wish the pandemic had never been, I can also say that God was active and at work in our lives this whole year. Parallel Truths.
January brought us on a cross-country road trip. Meghan and I traveled to Indiana so she could finally be paired with Ella, her long-awaited service dog. It was hours in the car, time to talk about all things and just be together. The drive was incredibly long. Yet, we shared laughs that were also endless.
In February, while still holed up at home, with no indication of when the in-person senior year would begin again, my girl finalized her college commitment.
March brought Covid right into our house and knocked out Felix harder than any of us had dared to imagine it could. The “healthy” one was out of commission for a solid month, with 6 of those “covid pneumonia” days being in the hospital on oxygen.
When he was well enough, he began to learn his “Cricut” machine and slowed himself down. My OCD had me throw away our mattress (yes I KNOW it was irrational) and kept us as a party of three for Easter Sunday in April.
In May, during a year of teaching remote 4th grade, for more hours a day than I even like to recall, the most delightful surprise came to my front lawn from families that made every hour of that school year worth it. I have never in my almost 25 years worked harder. And I have never been so appreciated by a group of students and families. Again. Parallel Truths. As much as I missed my own family during those long days and nights, those 29 faces will be a part of my soul forever. We lived through it… together.
May also took our beloved April dog, our rescue of 6 years from us quite suddenly. April was the girl who kept Lucky going after her “sister” Allie died in 2014. April was the sweetest. Our “vanilla.”
And May, as things began to slowly open brought joy as well. Meghan, who had through circumstances simply beyond her control, been without a church for quite some time, found her way to the Evangelical Lutheran Church of America, the church of my childhood, and of her baptism. She connected with Uncle Eric, a Pastor at the time at Good Shepherd Lutheran in Plainview, and spent a year of Confirmation classes on Zoom to receive her Confirmation in May. It was a culmination of so much, and an absolute intentional public confirmation of her baptism. It was something she so badly wanted to have done before college. Humble gratitude.
June brought graduation that was in person, from the stands on her school’s football field. I was ecstatic that there was an in-person celebration at all, and even more thrilled to have the early session on a hot June day.
July brought us to Disney and proved to Meghan and Ella that they make a heck of a team. We were impressed time and time again by them, further reinforcing that it had been worth the wait.
A mother/daughter tattoo of the ASL “I love you” sign that we have shared since the kindergarten bus got us a little extra ready, and then she was off.
September and October mashed together as we all settled into our new routines. There were some poignant goodbyes as she shed some of the weight of many years of being on the “outside” of life. There were some amazing “hellos” as friendships began to form, trusts began to build, and laughter could once again be heard. Fall break was at just the right time, to nourish her belly and our hearts. Fall swim left us able to watch live competition for the first time in ages.
November brought a dear sweet Cowden’s sister and her husband to dinner with Felix and me.
It also brought Meghan and a lovely Canadian friend home to spend Thanksgiving making their way through NYC.
Facetime conversations at college often looked like this.
Christmas magic brought her home for only a short time, as winter training is a real part of swimming. And between the lights and the magic and the peace of being just far enough away from home, Meghan and Nate found each other this fall, and a smile I have not seen on my girl’s face for 10 years has returned.
2021 had its downs. There were plenty. I don’t take pictures of them. My sister and her family were called to a church across the country, and on a short amount of notice, they packed their lives to once again be a plane ride away. I miss them.
There were medical appointments, and even an ER visit last week. There is a chronic foot injury that has been relentless and unforgiving. There are plenty of things that were lost, interrupted, and abbreviated.
Yet, I have to focus today on the parallel truths. In our house, there were real and important blessings this year. Maybe because we finally had to sit still long enough to appreciate them? I’m not sure. As the days and years go by I am reminded almost daily that there is no promise of tomorrow on this earth.
As I head out every day I do my best to follow Grandma’s rules:
“Before you speak, think. Is it true? Is it necessary? Is it kind? If not, just KEEP STILL.”
This world is on its ear. All I can do is practice the same grace given to me daily.
And today that grace came in the form of a 14-month-old coonhound mix who we named “Buddy.” He was rescued from a local organization a few hours ago and has already brought us all joy.
There are normal feelings I have right now. Like when I look at my adult packing for college and all I see is this.
I have all the normal swings of emotion of watching your baby grow up. I feel all the things you feel after you give them roots, and by God’s grace they grow the most beautiful wings. There is normal anxiety, about them making new friends, and finding their way around and starting a whole new life. Without you. During a global pandemic. After at least a year of abbreviated, altered and just not quite right classes and other human interaction. In all of this I am in good company.
Then, there is the added layer of letting your medically complex child free.
This is the child who screamed with colic for over a year while people told me it was just normal. This is the child who had her first surgery at a few months of age, only to have a baffled surgeon come out of an operating room to tell me the hernia “wasn’t there.” That was just a preview of things to come.
This is the child who was so overwhelmed with GI pain she became a sensory overloaded mess. This is the child who missed milestones, and who had early intervention services of OT, PT and Speech that eventually graduated into an IEP that only terminated in June. Yes, June of 2021.
This is the child who needed a timer to move from one side of the room to the other in PreK as her loving teachers guided her.
This is the child who wanted to run like the wind, but could not ever figure out why it hurt. This child we would later find was managing an arteriovenous malformation in her right knee. That knee. Seven surgeries on that knee. Years with the best Physical Therapist in the land. But, we did stop soccer, and dance. And maybe that was for the best. Maybe she has her mother’s coordination.
This is the child who the kindergarten teacher told me in November was “pretty far behind.” I told her to encourage but not to push. I would be just as proud of her as long as she did her best. Then, that same child got glasses. And with the nurturing love of that kindergarten teacher, combined with God’s GIFT in paraprofessionals she soared. This same child, by March had had her first knee surgery, recovered, and was sitting with the top quarter of her class. This child does not like to be kept down.
This is the child, who spent years sick with chronic viral infections. This child hung with me through mainstream and alternative treatments. She pushed me to push forward for her. This child and I went through hell together. We learned each other on the Belt Parkway and the BQE. And somehow we found beauty on the journey.
This is the child, diagnosed with Cowden’s Syndrome at the age of 8, whose diagnosis prompted mine. This is the child, my angel on earth, who saved my life with her diagnosis, as my breast cancer was caught oh, so early.
This is the child who never quite found her way with other kids. They just didn’t “get” each other. Some were so kind, but couldn’t connect. Many were terribly mean and maligned and belittled and tortured and tormented her soul. This is the child who would not break. Trauma after trauma. Surgery after surgery. Medical procedures layered on top of one another. This is the child who sometimes cried in my arms and other times locked it all behind walls. This child. This medical life. There are experiences that shape you, that make you who you are.
This is the child who chose her high school. Deliberately. She wanted to be with kids who were more in touch with real life. This child grew, through love and resilience and inner strength and therapy to learn all about herself. This is the child who found her way to God and a few special friends, finally, and not at all accidentally, right about the same time.
This child waited years for the service dog. The one to manage the needs that had developed through a medically complex life. Ella and she met in January, and the love in their eyes tells me it was worth the wait.
I abbreviate the tales of this child and her journey. I do that because it would make it too overwhelming for you. I do it because the chronicles mostly sit in the last ten years of this blog and sometimes the gut wrenching journey need not be relived in intricate detail. I abbreviate for my sake, because I can appreciate that God’s biggest gift to me is allowing some really traumatizing memories to fade just enough that I can actually breathe as I recall them.
If you ever want stories, I have them for weeks. If you ever need to tell your tales, I am here.
This journey to college has been a long time coming. My college athlete and scholar got there on “Gratitude, Grace and Grit.” That full academic scholarship- that took the resilience to overcome 17 surgeries, remain in top honors, and recover the body every single time to return to the water. Through it this child turned her experiences into compassion and a desire to care for others. As she puts it, she wants to “do better” for people like herself. And there is room. Plenty of room to do just that my girl.
This journey took learning how to manage to moment to moment pain of Arteriovenous Malformations, as a new one has developed in her thigh, and channel that pain into usable energy. To look into the eyes of your baby, the eyes of your one and only 18 year old baby, and to know they will likely never be pain free, is a special kind of torture.
This child, now an adult, will have one more virtual visit, with one more new doctor, before we load the cars. And we have all the fun stuff, favorite sweatshirts, and a pretty comforter. We also have daily pill cases, morning and night, set for 4 weeks. Along with a literal bucket of the “just in case” medications to get her through. There are gluten, dairy and soy free snacks. There are toys and treats for Ella.
There is a whole lot of new.
My heart is full of hope. While the medical problems travel with her, she has reached an age where many kids have seen life, and are generally more tolerant of humans. My heart is full of hope for new experiences, for laughs, and friendships that will form.
My child leaves with less experience in some areas, and so much more in others. And my hope, my prayer is that in this place there will be balance.
I am with all my other mother friends, leaving their children at college.
My heart is with my mother friends who will never have the privilege to experience this “going away to college.”
My heart is with my mother friends whose babies no longer walk this earth, but cover us all with their angel wings.
I have learned from all of you.
And as I cry, because I will cry, I will also absorb the magnitude of the fact that this is happening.
As we told her doctor many years ago… “every step of the journey IS the journey.”
May of us cringe when we hear “victim blaming.” It happens often to make us feel better. somehow we are able to convince ourselves that that horrid crime, often domestic violence or assault happened because of what the victim was doing. Somehow this can make people feel safer, like it can’t happen to them. I never quite understood.
This week I have been thinking that “patient blaming” is just as real. It can come from a doctor, a family member, an acquaintance or even a friend. In my estimation “patient blaming” has decimated my spirit more times than I can count.
We saw a doctor on July 1 for the AVM in Meghan’s thigh. She was supposed to be “the best,” a term I know is used too loosely. She is a hematologist who many years ago prescribed an off label drug that quieted the AVM in Meghan’s knee for a good stretch of time. There was a GI bleed that hospitalized her about 8 months after. Maybe it was the drug. Maybe it wasn’t. We can’t seem to keep a doctor on the team long enough to have a long term understanding. However, it definitely worked to quiet the AVM because almost 6 months to the calendar after the medication was stopped, the AVM had a bleed of it’s own and left us with Thanksgiving week surgery.
This doctor knew we were coming to seek another drug being used off label for AVMs in our population. She took basic information via MyChart and seemed eager to help. We got the scan. We saw her. She spent a good hunk of time analyzing and criticizing Meghan’s regimen of prescriptions and vitamins. I asked her which ones she would cut. She had no answer, but used that medication list to tell us that there was no way Meghan could take the drug we sought.
I told her that in the absence of a solid multidisciplinary team I took us through every highway and backstreet alley in this city to get my kid functional. I worked with many doctors and put together a combination of prescriptions and vitamins that had allowed my kid to complete school with a full college scholarship, and be an athlete and community leader. She was unaffected. And, she told us that Meghan would not be a drug candidate prior to reviewing the MRI/MRA as she “does not read scans” and the report from our AM visit was not up that PM. She also made sure to tell us rare disease patients are “a lot of work.”
That evening she sent a message with articles cited for PTEN screening. NOTHING more.
But the report came up on 7/2, and I viewed it alongside the images. And I still want to talk to someone about the drug. I sent her a message on 7/3- no reply. NOTHING.
Ten days passed and I did this…
This morning we had this exchange…
Now, I had to maintain my manners, but I just about lost it. “I just sent generic guidelines???”
And WHAT exactly would you suggest we do next? How are you feeling about the report. What does it say to you?
I waited weeks for that appointment. I timed it right after school ended for the year. And again, a waste of time.
Time after time this scenario plays out.
I have lost count of the number of doctors we have seen that have come with promises of being “the best.” I have scheduled, and rescheduled. I have driven hours. I have spent ridiculous sums of money on tolls and parking. I would do it all a million times, but sometimes the feeling you are in the hamster wheel is all you have.
There is no one who knows me who would consciously say I have been anything less than a mouthy and stellar advocate for my girl.
Yet, inevitably this is where the “patient blaming” finds it’s way across the lips, of the doctors who can’t help, of those I love, and those I just tolerate.
“Why are you on all those medications?”
“Does it really hurt ALL the time?”
“Well, did you try doctor ____ in _____? They are THE BEST.”
“I took my child to _____ and that is the only person I would ever trust.”
“Everyone has pain.”
“You asked THEM? WHY?”
“What did you do differently today?”
Sometimes it is subtle. Sometimes people don’t even realize it. Other times, I’m not as sure.
Do people realize we are all doing the best we can?
Do they realize we have jobs? And insurance restrictions? And children who NEED for their mental health to have LIVES that do not FULLY revolve around waiting for doctors who MAY care enough…??
Do they realize even when we call, after HOURS on the phone, sorting out all of the above, that it may be MONTHS before our jobs, which allow for the insurance to pay for these exams can free us? Because there is NEVER EVER one issue at a time.
We are all juggling spears. All the time. There is no rest.
We are 11 appointments in over the last 2 weeks. We are far from through with the summer cram.
There is no place in my world for patient blaming. There is no place for parent/ caretaker blaming.
We in the Rare Disease Community must build each other up. And know when to speak.
Is it true?
Is it necessary or helpful?
Is it kind?
And as Grandma used to say, maybe if it isn’t we should just keep still.
My whole heart and soul is with a Cowden’s sister across the globe. The desire to wrap my arms around her in a giant hug is so strong. She has done all she could for her daughter. And despite all that, it may just not be enough.
Sometimes there is no one to blame. Sometimes it is scary. Sometimes it is close to your heart.
Lead with love.
If we don’t help each other – no one will.
So, we pray. We research. We learn. We rest. We pray. We seek balance.
Our healthcare system is broken. It is so desperately broken that I am not sure it can be repaired. But, I truly hope we are somewhere grooming a generation who will try. It is broken in so many different ways, but in the way we know best in this house, it is hanging by a very frayed and thin thread. And, truth be told, so are we. The question we ponder is what are we holding on to?
We have created sections, and subsections of care. I avoid the term “specialty” deliberately. We have crammed the status quo down the throats of exhausted and overworked doctors who are frequently jaded about their career choice before they have had the opportunity to size up the gargantuan pile of student loans they, or their credit, may never recover from.
Their jobs, at major hospitals have them double and triple booked for meager insurance payments. They are pushed to see more patients, and to do so faster. There is not time for inquiry, or for research for a particular patient. They are taught, “when you hear hoofbeats think horses, not zebras.”
And I get it – to a very minor extent. When I was in college I learned all about the bell curve, and how the vast percentage of the population, 68% fall within one standard deviation of the mean, or average. Which means the study of “normal” medicine answers whatever questions 2/3 of the population have.
If you take it a little further, by contending with some “odd” presentations, you have covered about 95% of the population by the second standard deviation, the bell part of the curve.
What if you have a zebra? What if you are rare?? What if it is a way of life for you? Then what? Or what if you land in “mythical” and you have yourself a “rainbow unicorn zebra?” Do you want to know what happens then? “Medical Professionals” are so uncomfortable because you exist that they try to make you go away.
We live in a big city. We have always lived here. We have been dealing with my own medical challenges long before we knew of “Cowden Syndrome.” My girl came into the world a medical anomaly and little has changed. Except the unrelenting quest for answers brought us to a diagnosis of PTEN Hamartoma Tumor Syndrome, and hypermobile Ehlers Danlos Syndrome, and a Mannose Binding Lechtin deficiency, and and AVM in the knee, that on it’s own accounted for 7 surgical procedures, and one in the thigh, and a VM in each palm, and a lumpy thyroid that needed to be removed, and the same for the tonsils…. and…. and….
So, it’s summer. And while others are complaining about their jobs, we are doing ours. We are checking in with countless specialists as Cowden’s is a syndrome of constant monitoring. It is our job to catch cancer before it catches us. There are games I prefer. But, this is ours.
Over the years we have sought counsel from the most prominent, and the most “off the beaten path” doctors we could find in this city. And as my confidence grew I checked them. I checked their credibility. I learned more chemistry and biology than my 9th and 10th grade teachers could have imagined possible. I listened, I tried, I added and subtracted. And there grew a complex combination of prescriptions, vitamins, and compounded off label medications that make up a daily regimen in this house.
Do I have proof? No more than they do.
Monday and Tuesday we saw two of the best this state has to offer. One is a pediatric endocrinologist who looks at my child as a WHOLE PERSON. The other is an orthopedist who has seen her at her best and worst, and genuinely takes pleasure at helping her reach new heights.
Today. Let’s just say today I could have done without.
As a newly diagnosed PTEN patient Meghan was sent to a “specialist” who knew more of this disease. She was the one many of the others in our circle, (HUGE CITY, SMALL CIRCLE) referred us to as the guru. At the time she prescribed a medication that seemed to do a lot to slow the AVM under the meniscus of Meghan’s right knee. For a good stretch of time there was a respite from the vascular embolizations. We were on a good track. Then, there was that time she ended up in the hospital with a severe gastric reaction. It was assumed that reaction was from Celebrex, the drug with the off label properties that seemed to be slowing the progress of the AVM. Her esophagus was raw, and whether it was to blame or not, it was the likely culprit. I was cautioned we’d know within 6 months if it had been working.
Almost 6 months to the calendar there was a bleed in her knee that caused an emergency surgery. It was the AVM. And that time, enough blood sat there long enough to complicate a few more things. Had we been “Robbing Peter to pay Paul?” we would never know. The Celebrex left our life and knee surgeries resumed.
Hypermobile Ehlers-Danlos, undoubtedly an issue since birth, made nothing easier. The pain of constant subluxations was taking its toll. We added what we could to provide some relief.
Ella, the service dog joined us finally in January after a 3.5 year wait. Ella provides her own medicine.
But a few weeks back I thought, let’s revisit this PTEN “specialist” from yesteryear to see if she could offer advice on an off label treatment for the newest AVM in the upper right thigh, dancing with the sciatic nerve, too deep to remove, deep enough that the effectiveness of additional embolizations are questionable.
Her office insisted on new scans, and MRI/MRA with contrast prior to the visit. We had to schedule them both the same day as the office visit so we could discuss the new scans.
So, for the third time in 4 days we left for an all day medical journey. We left at 9:15, started the scans by 11, finished by 12:15 and waited till 12:45 for the CD which, even though they told me I didn’t need, experience has taught me that, yes. I do.
This was the first time, after well over 40 MRIs that Meghan was in the room alone. Ella was mine to care for in the waiting room. Mixed emotions everywhere.
The pouring afternoon rain showers seemed to add to the gravity of the day.
Having not seen this doctor since 2014, we caught her up on the surgeries since then. She is new to the facility we were at, although not new to the field. She immediately began to question well researched decisions made by a doctor who left the facility last year. The hairs on my neck began to stand.
She knew we were there about the AVM in the thigh, and we were looking forward to hearing her take on the scans. Imagine our shock to learn the images mean nothing to her, and we were waiting for a report that was not destined to arrive that day.
She reviewed the medication list and openly criticized it. But, she would not speak to what she thought was excessive. In a few sentences she managed to demean and demoralize. We asked about medications for AVM, and she mentioned one we are well read on. But, she then dismissed it because Meghan will be at college next year. “It is hard to monitor. I don’t monitor it. There is another doctor who does it. And I don’t know if you’ll be able to do it remotely, or if you can even get the blood work in Pennsylvania. Plus, we don’t even know it works.”
We asked again about the Celebrex, but she was reluctant to try it again.
At which point Meghan, who had been so quiet, let the doctor know she was instilling zero confidence with her list of “maybe,” “possibly,” and “probably not.” Meghan was accused of seeking pain medication. Which she was CLEARLY not. Trust me. This kid values above all things having her wits sharp.
I expressed our frustration with the carousel, or rather the teacups is a more accurate description of this ENDLESS ride. As she began to mention more doctors I shuddered. I asked her if she understood the physical, mental and emotional toll on the patient. I asked her if she understood by the time we leave appointments like this we are unable to accomplish much. Hours in traffic and the emotional turmoil of more questions than answers, we are exhausted.
She felt compelled to remind me that the process is slow, and I must be patient.
Again, I am not in a small town.
I am in a huge city. With great insurance. Which is useless because I can’t seem to get much covered anywhere but here. And who wants to see us anyway?
She made sure to remind me the hardship it is to take on Rare Disease patients. She reminded me about the paperwork. Yep, I know.
I reminded her that I have pretty much lost track of all casual contacts trying to keep my head above water.
Either she didn’t understand, or she didn’t care. She was too busy telling us Meghan is a success BECAUSE of doctors like her. I guess, technically she’s not wrong. Meghan is a success and will continue to be her best self because she knows she wants to DO BETTER and to BE BETTER, for all the Zebras, and the “regular” people too. So yes, she is a success, not because of those like this doctor, but in SPITE of them.
I’ll mail the CD to the ortho. In case we have something we have to do. In the mean time I will continue to teach and empower Meghan to manage her care as best she can. She is amazing. She never stays down long.
I watch the traffic counter on our blog click real close to 250,000. A quarter of a million hits on little excerpts of this messy road. It blows my mind actually. I may never understand why people read. But, I do know why I write.
Ten years ago someone nudged me to tell our story. I told them there was no story to tell. Except in reality there was. My undiagnosed kid, my medical mystery, had gotten her diagnosis at the age of 8. The pieces started to make sense. And, my diagnosis followed later, connecting more dots, and solving some long standing questions.
So in May of 2012 I jumped in with both feet. I typed. I hit publish. And I never looked back.
Through the years people questioned whether it was wise to tell Meghan’s story before she was old enough to tell it herself. They didn’t realize she was telling it; hosting fundraisers, speaking at events, and even being honored as a 2016 NYS Woman of Achievement. She has also always said she would do it all again if it could help this complex diagnosis make sense to one person, to one family. If it could give someone hearing “PTEN Hamartoma Tumor Syndrome” or “Cowden Syndrome” for the first time, an image of people living with it, living through it, and doing their best to make life happen, then it was worth it.
Because really, at the end of the day, what we all need is hope. Well, hope and one or two rock solid internet support groups.
When we were first diagnosed Meghan’s therapist liked to tell her not to let Cowden Syndrome “define” her. She had an active Arteriovenous Malformation creating havoc in her knee. He had her draw a smiley face on the knee to imagine the pain was gone. He didn’t last long after that.
The truth is, that between us there have been over 30 surgical procedures since 2003. The smiley face on the skin, well, it doesn’t help.
What helps is determination, faith, tenacity, prayer, and support. Because being friends with people who are always in the operating room, or in the middle of surgical recovery, or medical drama, is exhausting. It seems they are always talking about something medical. It seems they are self-absorbed.
People say “don’t let it define you” because it makes them feel better. Maybe a more appropriate sentiment is to be cognizant of how it changes you. Because if you are just starting your journey I can guarantee you one thing. It will change you.
I mean a decade changes all of us, right?
The thing is when you are in the middle of the ocean, trying to avoid the sharks, it’s so hard to focus on anything other than swimming for your life.
Everyone has their own lives though. Everyone has their own crises. Everyone has their own problems. Yours seem constant. They are hard to keep a handle on and they can drive away even those with the purest of intentions.
I used to have hobbies. I don’t really exactly remember what I used to do. But I am sure I did.
I used to go places. With people. For fun.
But, now I often survive. And most days that is plenty.
There may be time to figure out those hobbies again, or to reconnect with those people. The 8 year old is turning 18 and is off to college in a few short months. Life keeps moving.
So 10 years into this blog, what are my take aways for a new family reading?
It will change you. Check yourself.
Enduring life with a rare disease can make you:
Angry or kind
Miserable or compassionate
Self- absorbed or philanthropic
Question God, or praise Him
Isolated or connected
Overwhelmed or focused
Complacent or driven
At some times in the last decade I have seen each of the above in me. I never made the decision to bring Cowden’s Syndrome into our lives. It did change us both.
Last week Meghan mailed out Thank You notes to people along her educational journey, from her elementary school paraprofessional to her high school principal. These people changed her for the better. She, from a life of medical struggles has learned that kindness matters. We say, “No kind word is ever wasted.”
Today Meghan left a training session at a local gym to tell me her trainer has a child with vascular malformations like the one in her knee. She gave him the number of our genetecist.
We learn to use the situations we are in to push the limits of what we are able to do. We hold our faith close.
Our identity as rare disease patients is tightly interwoven into the fabric of who we are and who we continue to become. But, even within the diagnosis there are choices. We can not control what happens to us. We can only control what reaction we have.
As a dear friend once told me, “When God closes a door, praise Him in the hallway.”