Last night was the kind of night I never talk about. My girl tells me I let the world off easy because it makes everyone else uncomfortable when we talk about our pain. She insists it’s not my job to lessen our pain so others feel better. For me it’s always the way I go, but the truth is she’s not wrong.
Still it’s hard for me to tell the raw story. I use my writing to sort out all the dark thoughts and bring the light through. And when I can’t do that authentically I usually just stop. I stop writing. I stop talking. I hide.
Last night there was nowhere to go. It was a long dark night with hospital style interruptions every 7 minutes. There was minimal sleep, and unrelenting pain for my girl that was a solid 10/10 for hours.
Last night lasted forever. The gut wrenching cries drowned out the shattering of this mother’s heart when the hard truth that there is literally nothing I can do to help settled in.
The reality that the surgery involved the removal of inches of muscle was evident somewhere between the spasms I could see/ feel from the outside, and the Valium/ oxycodone/ dilaudid rotation that was being tossed at her to at least inch things a hair lower than 10/10.
Not helping at all was/is the feeling of numbness/ diminished feeling all down the front of her leg. She was/is not currently reassured by the theory that it could be nerve swelling. We’d have a better idea if they were able to push NSAIDs. But they can’t. Because that pain in the butt (literally and figuratively) tumor bled…
Having sat by her side through countless surgeries – this one officially wins the “Suckiest Surgery” award.
At some point they will brace her, put her on crutches, and get her moving. We are well aware that “the only way out is through.”
This surgery, where the patient is an adult who has a ton of knowledge of human anatomy and is prepping to be a healthcare professional- this surgery is the hardest. This surgery where mom is a guide on the side, and I can make actually nothing better… this surgery is the hardest.
This time I’m too tired to create a happy ending. This time I’m a 50 year old mom with about 90 minutes sleep in the last 30 hours.
Maybe this was the perfect time for me to tell the story I never share. Our story is one of overcoming, but if I don’t describe the obstacles/ land mines we overcome on the regular, maybe I’m not really doing our story justice.
Our story is one that does not quit, and does not give up. But our trauma from a life of this… it’s so ingrained in who we are that it’s impossible to tease the two apart.
Where does that leave you, well meaning family/ friends/ strangers? Well, it probably leaves you uncomfortable. And maybe for today that’s ok.
What can you do with that? You decide. Never underestimate the value of sitting alongside those who suffer even when you can’t fix it. Maybe especially then.
Either way- you choose. We’re busy using every ounce of strength we have…
The recovery room is the land of mixed emotions. So grateful to see her on the other side of another surgery, yet so terrifying to see her pulse ox dip as they race to get her on oxygen.
Gutting to watch her screaming in pain until finally a cocktail of pain meds knock her out completely.
She should rest. After squeezing in her GRE from 9:30-11:30 she fired off 6 applications to Physician Assistant programs before catching less than 2 hours sleep.
That sense of urgency is our 24/7.
We left home at 4:30- arrived by 5:30 and was in surgery by 7:30.
Three and a half hours later, we got a decent- yet not perfect report and I sit by her bedside… waiting.
Waiting to see if she’ll breathe without oxygen the way she needs to.
Waiting to see how they’ll manage her pain.
Waiting to map out the road to recovery.
Waiting.
He got the tumor. But with it went some healthy muscle too. He got the tumor, but the SOB had a vascular component too.
He got the tumor… but…
There’s always a but.
For now we sit. And wait. And HOPE for all the best answers to chronically complicated questions.
That’s what I thought to myself when she first told me. That, along with a million other mom thoughts that happen when your 20-year-old declares that a new tattoo is coming.
However, she and I have developed quite a solid, trusting relationship through the years.
We are at a place where she can know that I’d rather she didn’t, but I can still be happy for her when it turns out exactly as she needed it to.
She understands herself, and that is a life goal many never achieve.
When I asked her to put the reasons behind the dragon, she sent me this…
I’ve been poked, prodded, and cut open my entire life, and I’ve never wanted any of it. I needed to do it to survive.
I am 20 and covered in scars that bring those memories back every day. So, I decided I needed to pick what happened to my skin for once, and that’s how my love for tattoos began.
It became a way for me to tell my story and show people what I was about when they saw me. I got to define myself and what I wanted to see on me as well as what I wanted others to see.
This time I picked a medieval dragon design, and I am over the moon with my artist and how it came out.
I spent a lot of my youth feeling weak, broken, and frustrated I couldn’t protect myself, all while reading through fantasy books faster than most could think. So, I got a dragon done because it was always my favorite creature and it was the epitome of strength, with impenetrable scales, and fire breath that meant no one could mess with it. I want to be that, and it’s my everyday reminder to work to a place where I have scales strong enough that no one can mess with me and fire breathe that allows me to take care of myself and keep my mind and body safe.
Oh, and the three stars are for our family of three…
It is impossible not to be proud of her, and grateful for the relationship we have.
Cowden Syndrome can be very cruel. But, my warrior kid is out there every day…
Two hospitals, two IVs, two legs, four paws, and a tail. That is the short version of the last 2 weeks.
On the morning of May 15th, a few days after a week of intense finals, I drove Meghan to the hospital so her interventional radiologist could have another go at the vascular tumor buried deep in her right thigh. This ridiculous, relentless beast has situated itself adjacent to her sciatic nerve, and it’s nestled way too deep for removal. This incredible interventional radiologist is truly a class act. He is wise, compassionate, and empathetic. He is patient-focused and his passion for his field of work is evident as his desire is to help. All the time.
This same doctor worked on this tumor in May 2022. That was a layered procedure chronicled in detail here https://beatingcowdens.com/2022/05/ And while his work was helpful, the pain returned this spring with a vengeance and it was time to go at it again.
While we waited for the procedure, we passed the time as we always do. We shared some random conversations and made small talk with anyone who could help us place our nervous energy anywhere but on each other. We have been in the pre-op staging area so many times that every crevice and every sound are more familiar than you ever want to know, and we have a healthy respect for the emotions it evokes. Without those types of experiences people might think our photo ops are utterly bizarre, yet like so many things in life; if you know, you know.
On that day we were exceedingly grateful that the doctor’s daughter who was due with his third grandchild on 5/20 had not gone into early labor. The little things are the big/ huge things, and truth be told, his fervent love for his own family is infectious, and no doubt makes him a better doctor, at least from where we stand. His desire to communicate with Meghan, 1:1, by directly texting her has elevated him to near saint status in my eyes. A doctor who cares as much about his patients as is humanly possible undoubtedly generates the most positive outcomes possible. By the time he came in for consent, it was a mere formality as they had hashed out all the potential risks and benefits multiple times.
When they left for the procedure room, Ella and I grabbed a seat in the waiting room where I would pretend to play solitaire and candy crush for the next few hours. When the doctor called to let me know he was finished and that it went, “as well as I could have hoped from my end,” we headed to recovery. Her arrival in the recovery room was delayed by an hour due to severe pain when she woke. By the time she arrived in the recovery room, she had been knocked out with pain medicine.
The recovery room dance is one we have perfected and I know she’s awake when she asks for her glasses. It takes a few hours of monitoring, post-anesthesia coherence, some ginger ale, her GF bread, and a strategy for pain management before they consider a release. And as we were getting her situated in the car for the 90-minute ride home I sighed again with the ridiculous things this disease has forced us to normalize.
It was more than a decade ago when we stopped both taking the day off work on surgery days. Years ago our budget could just not afford it, as my husband is paid hourly and only when he goes to work, but now, when we could swing it financially, it just makes little practical sense. That sounds terrible even as I type, but the reality is we have normalized surgery. And we know it makes more sense to alternate days in case she needs post-op care.
Except, she really doesn’t. She also has normalized things to a point where she can get her own basic necessities pretty early in the recovery process. The first 72 hours are always the worst. It is in that window that her body is clearing the anesthesia and figuring out the new sensations. Once that dust settles and the swelling starts to subside we get a better idea of what the recovery timeline is.
Although my girl, a young woman now, understands 21 surgeries in that recovery goals must also allow “real life” to continue. And the harsh reality, and an incredibly ironic situation in my opinion, is that she needs to work to get “patient care hours” to apply to PA school. I believe the purpose of those hours has a great deal of value. Medical professionals need to be able to speak to patients in ways that are not demeaning or judgmental. They need to be able to listen to and respond appropriately to the people they treat. Except, this girl had BEEN the patient her whole life and is literally pursuing medicine to listen to and HEAR her patients. But, that is irrelevant because the criteria must be uniform.
So, dealing with swelling, residual pain, as well as numbness, nerve pain, and altered sensation in most of her leg, my girl said goodbye to her boyfriend who had been keeping her company for the week and prepped herself to begin her new job as a medical assistant the following Monday, May 22.
The day was challenging in so many ways. It was also painful and draining. I was most concerned with her when I came home from work at 3:45 that day. I saw her unwinding with Ella, sharing some tears with her BFF and I headed off to acupuncture, in my newest search to overcome the residual pain from my 2019 foot injury. In my haste, I forgot my phone. I called home from the office and told them I would be home in about an hour.
That was DEFINITELY the last time I will forget my phone anywhere for quite a while. I am used to 3 tails and 12 paws greeting me at the door. There were none. Ella was laying on the bed in Meghan’s arms and Jax and Buddy were trying to offer comfort to their sister in distress. My husband gave me a look that I knew meant swift and decisive were my only moves. So when Ella did not even thump a tail for me and choked on a small piece of food, (Ella is the girl we sometimes love to hate with the appetite of a linebacker and the waist of a supermodel) I knew we had to move.
We called the vet from the car letting them know we were coming. Within an hour they had an IV drip in her and her temperature had come down from a mid-106 to a low 103. She had a little bit of a wag when she came in to see us after that IV, but she was not being discharged. She stayed in the vet for 48 insanely grueling hours. She had virtually no white blood cells, which equates to precious few platelets and neutrophils, and little ability to handle an infection or a scuffle with her brothers. She was started on two antibiotics.
Two days later her WBC had increased 20-fold, and she was released. We still do not have a reason, and Ella’s follow-up visit is Thursday. She is still taking those antibiotics but has returned to her antics and last night wiped out both of her furry brothers with her pouncing and running in the yard.
Meghan’s pain is still significant, but we hold a bit of cautious optimism as it is “different” than the tumor-meets-sciatic-nerve hell that she was enduring pre-operatively. Ella is back by her side and it is more evident than ever that these two were made for each other. The bond they have is beautiful and indescribable.
This weekend the sun is shining where we live. People are out and about, socializing and enjoying the start of summer. We have already been to urgent care to treat Meghan’s sinus infection (allergies clashed with 4 weeks straight of untenable stress). We opened the pool and picked up some groceries. We have not really left the house at all.
That is the story of two hospitals, two IVs, two legs, four paws, and a tail. This insanely crazy medical life has left us pretty blissfully content to do absolutely nothing when we can.
I could write for days and never fully tell all that is spoken through those eyes. I could detail wars, physical, mental, and emotional that would have decimated those who think they understand strength. And I may, but not today.
Today I will tell you to pay attention. Look closely. This right here is the future of healthcare. This is the face of hope. This is the face of grit and determination that comes only after you have dug yourself out of the trenches over and over again and refused to allow yourself anything less than success. This is the smile that says, “I will go the distance for you. I will not quit. You deserve better.”
You deserve better. YOU. The sick. The frustrated. The marginalized. The dismissed. Those of you on the very edges of that “bell curve” of medicine, in the places no one ever looks or understands. The Zebras in a world of horses. You deserve compassion. You deserve to be treated by someone who believes you can feel the best your body is capable of feeling.
It took a long time to see that smile. It may in fact have been the first time in close to two decades that I ever saw THAT smile. But, let me tell you, now that it surfaced, there is no stopping it.
This young lady told me many years ago she was going into healthcare to “do better.” And every single time we hug, my certainty grows. She will “do better” because she understands. She has felt it, lived it, and clawed her way through the depths of it.
Rare Disease Day is this month, a day when we try to raise awareness of rare diseases across the globe. As patients of one of those diseases, whose estimated occurrence rate in the United States translates into about 1,700 patients nationwide we feel this every minute of every day. We understand the urgency in ways that are impossible to articulate. We need to be seen. We need to be heard. We need healthcare professionals who will fight for US.
You don’t see the unsteady footing over there in lane 1, from two distinctly different-sized feet, and a leg still weaker than we’d like from a tumor buried just deep enough to make things extra hard. But, you see that focus? You see those eyes looking forward to the wall? You can almost hear the goals in her mind as she prepares to start the race. You have no way of knowing what it took for her to get there, on the block of this championship college swim meet. But, you don’t need to. You just know she belongs right there. She fought like hell to get there, and she will not be taken off course.
That race she is about to swim, it is 66 laps. A full mile of nothing but raw determination, and the ultimate head game. This kid is long game. She is not a sprinter. She never backs down from a grueling battle and she never gives up. She is the future of healthcare we need.
This kid. She is butterfly. Exhausting, like life. It can suck the wind right out of you. And yet, she has learned to breathe through it and sometimes make it look flat-out basic. This is the future of healthcare. We need to step into the room and tell our hard stories and tell them to professionals who can breathe through to the end. We need to ones who will not stop fighting the challenging races with us and for us.
This kid, she is not only a lone wolf. She knows that being part of a solid team is utterly essential to success. She will not miss the handoff, and she will fight like hell so that she and her teammates get where they need to be. This is the future of healthcare, where egos are less important than results, and when we work together EVERYONE is better.
These are smiles that say we don’t have to be on the top of the podium to get the job done. These are smiles that say, sometimes it takes a village and if we all do our part every single time we ARE better. THIS is what the future of healthcare looks like.
This swim meet last weekend was not all about swimming. It was about character, drive, and determination. It was about using what we have as a tool to get where we need to be, not as an excuse to stay behind.
This was about knowing that sometimes, you will hit a personal best every single time you go off the block.
It was about celebration, and accomplishment, not as an end, but as a means to press forward always.
It was about taking the time to cherish the successes because no one stays at the top of their game all the time. It was about remembering what it feels like to soar so that you can always dig back and remember you have more.
It is not always about getting a medal. But this weekend it was about that too. She wears that medal as a symbol that we are stronger than almost anyone realizes. She wears it to remind herself that the next time she is at the very bottom of the heap, wondering if she has the strength to get back up – she does. We all do.
We hugged for a long time in the hotel room that night. We talked about the others we “know” with Cowden Syndrome. We talked about how even in our small community there is such a wide berth of challenges. We took a moment to honor all of our “sisters and brothers” and dedicated that medal to all of them. Because a win for one of us, is a win for all of us.
And we talked about Ashton, our sister in Australia, gone far too soon. A bright light whose “you do you” mantra is one we speak with reverent smiles.
Sometimes you are on top of your game. Sometimes you can barely get off the couch. Sometimes you win. Other times you don’t. But every day we wake, work, fight and honor, and strive to be our best selves.
Remember this face folks. The future of healthcare is here. This young woman will be a Physician Assistant who makes a difference. She will make the world better for all of us one step at a time.
In solidarity with all of you, we remain
#beatingcowdens
And, if you have a minute, unite us with RARE DISEASE warriors around the globe by leaving a comment here?
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?”
October 2021
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!
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.
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.
While this did not come off of a statistics site, you get the point.
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.
beatingcowdens 