What if we all tried to really take a minute and put ourselves in the shoes of someone less fortunate? Not to beat ourselves up, but to build each other up. Imagine how different things would be.
Nothing kills the buzz in a room like the chronically ill. And, like any subgroup of people, there are the self-absorbed attention seekers among us. But, most of us, when we go through the difficult times, are able to offer the world desperately needed kindness.
Some days the fact that compassion fatigue has become normal hurts my heart.
What if it we normalized our own struggles while also acknowledging the struggles of others?
What if we held each other up instead of cutting each other down?
What if we showed compassion and human decency without any expectation of what we would get in return?
What if we all decided to “pay it forward” and speak and act with kindness?
What if the “golden rule” my Grandma referred to over and over was common practice?
I’m guessing the world would be better, softer, and more comfortable for all of us.
I’m getting older. My circle is getting smaller, and my heart is getting softer. I am grateful for all of those things.
Rare disease has beaten this body for over 5 decades. The storms have been relentless. And I am still here. My heart has been broken, and I have cried rivers of tears, but I am still here. Through those dark days I was never abandoned and never truly alone.
What if we focused more on giving others that sense of peace and love?
Maybe we should take lessons from these three? They are all different breeds, with different strengths, adopted and brought together in love. They treat each other like siblings in every way.
They never go away. Your experiences, that is. Our lives are literally made of them. And in all of our lives, some are happy, some are sad, others are joyful, or sometimes traumatic. We can’t change them. The glue that holds us together is how we deal with them.
After I crested 50 I became more introspective. I guess the decades between 2003 and 2023 saw most of my existence in survival mode. I would look at my friends with multiple children and think, “that must be so hard.” And I am sure it was. In a moment I can be full of empathy for anyone in any situation. What I never realized, or thought about, or spent too much time on was that our life was a daily challenge to survive as well.
Comparison is a devil’s tool in my opinion. So, I try my best to leave it alone. And in reality it doesn’t matter how you see someone else’s life or how they see yours. Social media is an illusion, and even this blog is often carefully worded to step over the darkest parts.
I only know my own life. And as my girl has grown, I have more time to reflect, and make changes as I need to. I am learning to give myself grace, to focus on my strengths and to set limits. I get tired. And allowing myself to feel that sometimes is a big step.
However, life is about balance. And negative speak drives me wild. I’m not one who likes to say things that are untrue, but I push to find the best in anything. Sometimes I fail. Mostly I succeed. Always, I try.
I spent decades holding myself together with superglue. And it gave me perspective and gratitude that allow me to be alone with myself a great deal, and still have peace.
We only get one go round on this earth, we might as well make the best of it. This earth is far from all I have, and I live with joyful anticipation of heaven, whenever God sees fit to take me from here. But, while I am here…
I am full of gratitude for my husband of 25 years. He is often the unspoken hero in our Cowden Syndrome tale. He has done more behind the scenes work to keep us afloat than anyone besides me knows, and he prefers it that way. The fact that we not only love each other after this many years, but we also still LIKE each other, well, that is everything. We share goals and hopes and dreams. And we share our love and respect for our feisty young woman.
I am grateful for survival. I am not sure why I was fortunate enough that my breast cancer was caught so early that I required no treatment beyond my surgery. But, in this pink washed month I am reminded of those who were not so fortunate. I am reminded of the wonders of modern medicine. I never forget the doctor who diagnosed our PTEN mutation, and the urgency with which he spoke to me, telling me of the cancer risks that “peak right around 40.” I am thankful that my daughter’s breast changes were found at such an early age, and that her screenings began when they did. I am amazed at her strength as she chose to get in front of her virtually inevitable breast cancer risk.
I have a hard time fitting in in groups. It’s not because I don’t like people. It is because a lifetime of a complex medical history, a daughter with a complex medical history and a rare disease diagnosis left little time for hobbies. I cannot relate to people too easily. My girl’s youth was definitely not “typical” of today’s world, and truthfully I don’t fully understand a lot of this world. It’s not necessarily a better/ worse situation as much as it is a very different existence.
Medical trauma is real. That I know for sure. I am exhausted. I am forever changed. But, I’m not mad about it. It just is. Like I said before, you get one go round on this earth. You get one body to work with. You do the best you can with the one you have. If you know you know, but if you don’t that’s actually better for you. It makes me happy, albeit confused, when I have to remember that there are people my own age that have never had, a single surgery, an MRI, a CT scan, etc. It doesn’t mean their life was easy. But, it does mean perhaps that we use a different brand of superglue to keep ourselves together.
Meghan calls me from her Physician Associate program in PA often. We talk several times a day and text throughout. Maybe that’s a mother/ daughter thing, but I don’t think so. I think it’s a friendship that has been forged by a similar life philosophy and work ethic. I think it is a product of our shared experiences, and the desire to make the best out of the lives we have. I know she makes me better. A better mom, a better teacher, and a generally better human. I think I do the same for her.
For a while I wondered if it wasn’t good for her to be this close to me. Now I know that’s nonsense. I think we all seek people who “get” us, and situations where we can be real. It’s not a place where any of us can live 24/7. We have to survive in the real world, meeting people from a vast variety of experiences where they are. But, I like being her landing spot, a place she always knows is ready for her, and a place where she is secure enough to be herself.
I am unapologetically proud of my daughter. My heart bursts when she explains how she works to do better, and to be better. She fully understands that we all are a work in progress, and she actively focuses on understanding her own strengths and weaknesses. She is a realist. She is honest. She is driven. She is tenacious. She never quits. She tucks and rolls through adversity like it is her job. (And, well, maybe it has been.) She is compassionate in a way that blows my mind.
She is so compassionate that at one of the most vulnerable junctures in her life, she parted with her own superglue, her service dog Ella, so that Ella could have a better life. Ella and she grew up together in college. Ella sat through classes, and exams, and up and down moments in Meghan’s day to day life. And, when things weren’t quite right with Ella and her overall well-being, my girl put HER girl first. Ella is retired now, living comfortably with us and her two furry brothers. Meghan soldiers on without her bestie by her side. She is forming her own superglue from within the cells of her rare and spectacular self.
The three furry siblings on the way home from visiting Meghan.
Recently we took Ella for a “Retirement” photo shoot. Natalie https://natalielicinicreative.com captured the love these two have for each other in a most magical way.
If you’ve read this far, thank you. I started this blog over 10 years ago to chronicle our journey. And I have not reread a single post. I have worked so hard pressing forward, and sharing our story in the event it could help someone else, that there has been no time to look back. In truth, there’s not point. We’re not going that way anyway. So from wherever the 285K plus hits on this blog have come, thank you.
In fact, as I reflect, blogging has kept me sane. Putting my thoughts together helps cleanse my crowded head and focus myself on the important things. And I think, being able to focus on what matters, is in fact my own superglue.
“Thank you…” That’s how she led at 6:30 on a Saturday morning, when I picked her up 140 miles from home so she could squeeze in a uterine biopsy on the weekend, so as not to miss any class her first week of PA School.
“Thank you…” How many 21 year olds lead with that? Nothing to eat or drink. Half asleep. Headed to ANOTHER procedure which would require ANOTHER IV into a vein literally EXHAUSTED from overuse.
She spent a few minutes telling me about her Friday night out with her new classmates before falling asleep. “It doesn’t suck.” This was absolute music to my ears.
Anyone who doesn’t know Meghan, and hasn’t followed her story, and even some who think they know her, but haven’t really been paying attention, might think that describing her first week of classes as a graduate student by saying “It doesn’t suck,” is negative, pessimistic, or a bad attitude. But to me, who has been paying the closest attention, knowing the reality that virtually every school experience has “sucked,” this was music to my ears.
No point in going backwards to the countless times when she was belittled, ostracized, tormented, and tortured. She was never perfect, and she never claimed to be. But years of therapy have taught her not to shrink herself down to fit into anyone else’s box. I don’t know why many kids found her unlikeable. But she knew it. Always. And the ones who didn’t mind her were typically too afraid to speak up. “It doesn’t suck…” cautious optimism. I’ll take it!
I had 5 hours in the roundtrip between home and her school to reflect on this kid. And I have to tell you, I’m so proud of her sometimes I feel like I could burst.
Don’t get me wrong. The years of social isolation have been daunting and exhausting. But, they have given her wisdom and patience well beyond her years. She has gained confidence. She is insightful. She is capable of telling you her weaknesses right alongside her strengths. She is transparent, and straightforward. You never doubt where you stand. She is passionate, loyal and driven. She is resilient.
Writing has been hard for me these last few years. I feel like we mark time in between surgeries, rehab, appointments, tests, and more surgery. I have withdrawn from almost every relationship I have because most people seem exhausted by our chronic cycle and I have grown weary of apologizing for our reality.
Meghan’s tumor in her right thigh took up most of her high school and college years. ’19, ’22, ’23, and with the ultimate torture in the summer of ’24, she became a regular at PT during the years when kids her age were debating which party was better. A mere six months after the worst surgery by far, our New Year’s Eve was spent at NYU in recovery from her bilateral mastectomy. Which, in case you wanted a reference, she said was so much easier than the leg surgery. Well, pain wise anyway… but, I digress.
We are living inside of 2 PTEN mutated bodies with all the trials and tribulations that come with them. My own scans continue. Battles with insurance and radiology alike are the rule, not the exception. In the last 6 months two of our primary providers left their practices and the job of “training” a new doctor begins again.
Pride. Focus. Determination. Dedication.
Meghan and Ella graduated from Misericordia in May. Then, the difficult decision was made that retirement was in Ella’s best interest. Selflessly she put her best friend and closest companion ahead of herself. Again.
Ella is slowly transitioning to retired life with her “brothers.”
She left in early June, a year after that leg surgery that still has me traumatized. She walked away from me with her passport in hand, and traveled 2,500 miles to meet the one friend she will keep forever from her undergrad. They met in Vancouver and they had a 2 week adventure that included activities she had never even dreamed of being able to accomplish. She paid her own way with gifts carefully saved through her entire life. She is a traveler in her soul. This was the first of many journeys that passport will see.
We squeezed in a ton of appointments at the end of June, including beginning to “train” our new endocrinologist. One of the appointments was a pelvic ultrasound. She has had them frequently since her “endometrial hyperplasia” in 2015. And when the report popped into her chart that Friday afternoon – we knew it was going to need follow up.
Her gynecologist is just an utterly superb woman, who trusted me with her cell phone number at our first visit. I texted her and alerted her. She found the report, and we were scheduled to see her July 3rd. Classes started July 7th. Because.. why not?
Her biopsy was Saturday. I stayed with her until the IV was placed and we met up again in recovery. It is a dance so familiar to us that in and of itself it’s unsettling.
We don’t have results yet. But I am tired of waiting. I’m tired of waiting for the next thing to be finished before continuing our story.
This is an ongoing saga. PTEN mutations do not get “fixed.” We may find some lulls along the way, but waiting is so much a part of this life.
Meghan took this at a butterfly exhibit in NYC with her dad, on her grandfather’s camera. I thought the busted wing on this blue beauty was epic.
Meghan walked out of the procedure, stopped, looked me in the eye, and thanked me. Again. I told her to stop, and she said no. “I’m so happy I didn’t miss Friday night, because of that uncomfortable Saturday.”
Maybe that’s the lesson. Don’t miss Friday because Saturday holds a daunting reality.
Two 300 mile round trips in 18 hours. She didn’t skip a beat and was right on time for classes today where she belongs.
Here’s to hoping “It doesn’t suck” continues to transition…
Meghan’s faithful service dog, Ella taking a post- graduation rest.
You’d think at 51 years old, I’d be in better control of my emotions. I mean, you’d think I’d at least have them labeled and organized. For all intents and purposes nothing is “new” here. We are formally 14 years into our Cowden’s journey, at least 14 years since our diagnosis of this mutation that permeates every cell in both of our bodies, and has done so since our births.
I think I have slowed down, and almost stopped writing, because I no longer know where to start. Literally decades have begun to blur together with the same pattern in an ugly loop.
“Don’t let it define you…” well meaning platitudes echo in my ear. And yet, Cowden Syndrome is at the very core of every action, every decision, every step we make. A genetic disorder is forever. We’ve lost friends and family over this reality. There will always be a medical challenge coexisting with whatever stage of life we are at. It just is.
Yet somehow, if we do not do our best to make others feel comfortable with our reality they back away. The “elephant in the room” is a metaphor we reference regularly. Cowden Syndrome needs to exist in every relationship we have. The acknowledgment that it is there and real, and never leaving is essential. And yet, once that is in place, we are more than happy talking and sharing and being part of literally everything else.
I’m told I am “intimidating.” Funny the power that words can have. That one rattles me. I don’t feel intimidating. What I am doing is surviving. I am navigating a wild ride we never asked to be on. I am organizing bills, and appointments and scheduling surgeries. While that is happening I am staying on top of my game at work, because I need my job, and I never know what crisis lurks around a corner.
What my girl is doing is enduring… with honors. “Gratitude, Grace and GRIT,” we sometimes call it.
You’ll meet your people in middle school… NOPE.
You’ll meet your people in high school… well maybe it could’ve been… but, Covid.
You’ll meet your people in college… well, maybe one or two keepers, but largely, no.
At her graduation on May 10th, we laughed, cried, hugged and ran the full gamut of emotions. She graduated Magna Cum Laude with a BS in Health Sciences. We, her mom and dad, beamed with pride. Her loyal service dog Ella was in some combination of attentiveness and exhaustion.
At some point there were tears, from both of us. Her, forever introspective, and me, wanting to fix it all. At one point she declared she felt as though she “survived” college, like it was some reality television show. But, there were many truths to her words.
She was accepted on a full, 4 year academic scholarship in 2021. She came entered as a swimmer in August of 2021 after a fragmented Covid swim year at home. She entered on new meds for a tumor in her right hamstring that had seen an embolization at the end of 2019 and was coming back at her – hard. That tumor nestled between the femur and the sciatic nerve was not to be beaten by the Lyrica that teased her with relief and beat her body with countless side effects.
In the summer after her freshman year, in May of 2022 there was another cryoablation to shrink this beast in her right thigh. This thing, initially measuring well over 5cm kept her nerves on fire, and the pain untouchable. She rehabbed in PT that summer and came back for her sophomore year.
During that year she dealt with drama in so many places I lost count. New relationships were not easy. It’s difficult to worry about teenage things when you are planning your next surgery, trying to ensure your transcript suits you for physician assistant school, and working daily in a fight with your body. Chronic, grueling, nerve pain isn’t exactly locker room talk. The classes were intense. The swimming schedule was rigorous and she did it all and ended that year, her last year as a swimmer, with a medal at championships.
That year also brought a past due formal diagnosis of ADHD. Not a shock, especially given the PTEN connection, but something I had with her on for a lot of years. Now, in the absence of me, my very capable kid knew what she needed, and got the diagnosis to check a necessary box. Little changed, but she was stepping into a role of self advocacy. I was sad it was necessary, and yet so proud.
The following summer, in 2023 she had another cryoablation. She was done not being able to sit, or stand, or walk, or move, or stay still without pain. Another swipe at this lingering tumor in her right leg. If they could get it off her nerve, maybe she could get some relief… There was work this summer, and PT, and pain, and the exhaustion of recovery. Again.
By the end of her junior year she had had it with the pain, and the orthopedic surgeon agreed finally to remove this beast from her leg. We spent the first week in June in the hospital- Meghan, me and Ella, with a few visits from her dad. The tumor was gone – as was a huge chunk of the muscle in her leg – all needed to clear the margins from the residue left from this tumor. In all my years and in all her well over 20 surgeries, I have never witnessed anything like that post operative pain. The amount of medication she needed, the assistance necessary just to move her… it was grueling. And isolating in the most epic ways.
That was the summer she completed all of her applications to Physician Assistant programs. Always on the ball, she kept her eye on the prize and got them all out – on time.
She spent her junior summer recovering, again. PT x3 days a week and a hybrid class to gain her certification as an EMT. She pulled through both and left us in August to begin her senior year. In a “grown up” apartment, off campus, just her and Ella. The doctor told her it would be 6-12 months before she felt like herself again, but even enduring the 3-6 month phase during the fall semester was progress over the pain she had been in. This one seemed to have finally given her some relief.
So we thought maybe she could catch a break. Until 2 breast lumps became 7 and the talk of a prophylactic double mastectomy to get in front of her 91% breast cancer risk got real – and fast. The surgery was scheduled for 12/31/24 – New Year’s Eve. She stayed with us through early February and then headed back up to school to knock off a few nonsense classes before her degree could be conferred.
That spring brought her the ability to decide to stay at Misericordia and begin her studies in their PA program in July of 2025.
So as we ran the gamut of emotions that graduation day – you can imagine that they were probably not too similar to those of her peers. She “survived” college indeed. “Survived” on a full scholarship and ended with a 3.85 GPA through some of the most ambitious electives I’ve ever seen.
“Don’t let it define you…”
I disagree. Let it define you. Let it make you stronger. Let it make you more determined. Let it make you less tolerant of BS and meanness. Let it make you full of compassion and kindness and all the things you have felt missing in the world.
When you have an all-consuming genetic disorder the notion that it won’t define you set’s you up for failure in my opinion. This diagnosis changed everything. It changed us.
May is PTEN Awareness month. I am lacking in my publicity of this. If our angle, our view is unorthodox and gives you trouble, please know we’re ok with that. This is not a one size fits all syndrome.
But for us, PTEN Awareness means also being AWARE. Being aware of ourselves, and our Cowden siblings across the globe.
We all face vastly different challenges. We all carry hope together as a beacon of light into the world.
We are pretty in touch with reality over here. We are acutely aware of the struggles of others in the world. We believe in sharing, supporting, and showing up. Pull up a chair for our “elephant” and let it have a seat in the room. We will gladly make a space for yours.
Then maybe we can all get about the business of loving on each other…
There is no longer a need for pain meds. At least not the ones that heal your physical pain.
The pathology, all nine pages of it, has been sent to several places for “additional review” due to the rare and unusual (who is surprised?) although thankfully benign tumors throughout both breasts. No, they were not “just fibroadenomas.” No, they would not have “resolved themselves.” No, they were not “just hormonal fluctuations.” What they were, were warning signs, and a confirmation that the right thing was done.
“Your story has a double mastectomy in it.” That is what she had been told. The only variable was where it fit in the plot line.
Deciding when to have a double mastectomy is not an easy decision. As a 21 year old it is another epic step in a way too difficult journey. But, it is one that no one, not Meghan or her medical team regrets.
Today was the second post operative visit. The drains were removed Friday. The incisions are healing. But, today was a difficult day.
Today was the day where my beautiful girl, so beaten down and traumatized by the cruelty of humans was left vulnerable and once again in a waiting pattern.
Wait, it’ll get better. Every. Single. Time. They kept saying it her whole life.
You’ll feel better. You’ll meet new people. People will step up. The pain will lessen. It’ll get easier.
Except it didn’t.
Not the pain in the leg, or the diffuse pain of being bullied, abandoned or silenced for being “too much.”
Today she went in with scars fresh from the cancer prevention amputation that was her New Year’s Eve date. Today she went in bruised and scarred and trying to find her footing in this new body.
Today she was greeted with kindness. She was treated with respect. But, she was given words that hurt.
You. Have. To. Wait.
She knows patience. Trust me. She has waited in offices. She has waited for pain to subside. She has waited, better and more gracefully than most.
But, my girl is a do-er. She wants to do it, and put it behind her.
No one spoke about this waiting place.
This place where you just wait for scars to fade, and swelling to subside. Where you wait until you don’t feel like you are looking at a stranger in the mirror. This place where you wait to feel comfortable in your own skin, in any clothes, or just at all. This waiting place where mental torture reminds you of years of trauma and of never feeling quite enough. This place where you crave talking, but so many run because the sound of your voice is too much for THEM.
This place is not where she will stay forever. But, it’s like her car is out of gas, and the nearest station is too far away. She must pause and wait on the healing and try not to lose herself in the relentless noise in her head.
I’ll put her fall Dean’s List certificate in her scrap book while she works on her final undergrad semester remotely after this exhausting day.
The next post-op is in three weeks.
Today was a difficult day indeed.
Cowdens is hard work. It is not for the faint of heart. If you love someone with this wicked syndrome or any like it, be present. It is everything.
If they are messed up enough from something, a loss, a trauma, or literally ANYTHING that prompts you to ask that question, they are likely INCAPABLE of figuring out what they need, let alone asking you to do it.
My advice to you – SHOW UP.
My further advice is if you are not prepared to listen, sometimes to heavy things, or if you are not prepared to leave your judgment behind, and support them, KEEP GOING. When you offer to do ANYTHING, many times it will not be a THING. Many times it will be letting them talk out their pain, anger, grief, recovery, fear, difficult decision…etc.
But if you truly want to show up, and are prepared that they may actually reply in a way that requires you to do so, then I offer these examples of showing up in increasing levels of challenging in case you like to start small:
*When you are checking on someone, whenever possible, check DIRECTLY on them. Use their own cell phone. Text them. Call them. Checking on someone by proxy may be easier for you, but it’s not helpful to the person suffering.
Text. Even If you don’t know what to say. Text anyway. There a million cute emojis that can signal to a human that they are on your mind. Don’t assume they know. Again, if you were prompted to make the statement above, they are in a whirlwind of pain. They literally can’t tell you what they need. Except knowing you’re thinking of them helps. And they can’t know without you reaching out because they are not psychic. One. Single. Emoji. Counts.
Text words. Even if you don’t know what to say, but you are more daring than the emoji only suggestion above, use words. Simple words. I’m thinking of you. I hope you see a pretty flower today. You are loved. Or any variation of the above.
Text invitations for them. This gets a little trickier because you may have to try a few times. But, “Hey, I’m free for a few, do you want to vent?” Or “Feel like chatting? I can call.” Or, if you live close, “I’d love to pick you up and take you for an ice cream, cup of coffee, loud scream in the park, swing on the swings….” etc. are all good suggestions. These invitations make someone feel valuable, and not pressured. They make them feel like they are on your mind and worth your time. They are currently doubting this while feeling like they are “too much” for human contact and worried that they will drag you down into their abyss.
Call them. Now to some this is terrifying, but here is a spoiler alert. Cell phones make it easy to bypass calls that come at difficult times. So if you call them, and they can’t talk, leave them a voicemail telling them they are on your mind, and invite them to call or text you. Hearing your voice may be just what they need.
Offer to meet them. Doing something they like. On terms that are good for both of you. Maybe a walk in the park. (Someone did that for me last week and it was so amazingly helpful. 🙂 )Anything that no one feels cornered by works
Stop by. Yep, it might seem freaky in this age of minimal contact, but try it. Showing up in person to just sit with someone in their pain is amazingly therapeutic, and might make you feel good too. And when you stop by, be content to sit in a messy, chaotic space and need only a glass of water.
They likely do not want an opinion or a suggestion, or a platitude. If you feel compelled to give those… you may want to refer to paragraph 4 above the picture.
They may never choose to offload their burden, or they may do it repeatedly. I have found once you allow the “elephant” to sit in the room with you, and you acknowledge it is there it becomes an understood, albeit unwanted guest. But only once you have offered that “elephant” a spot in the room, and acknowledged that you see it, can things move forward. At that point, topics change for a time, and sometimes people even laugh. It’s incredible. And when the person needs you again it is so much easier, because they know the “elephant” a bit. They know it is there. No one needs to start from zero again.
If you have truly decided to show up, then whatever way you decide to show up. Do it. Don’t make yourself feel better by saying “I didn’t want to bother them.” They’re bothered. Their life is in turmoil. Your caring will not make them feel worse. I can almost guarantee it.
The older I get the less I understand social dynamics, and the more of a recluse I become.
I am pretty in touch with real life. I am totally aware that other people have epic chaos in their lives. As a matter of fact I would dare to say, when given the chance, I am a pretty good listener. To be honest, I enjoy the opportunity to listen because it means someone cares enough to share their life with me. But chronic illnesses are, well, CHRONIC. Genetic disorders are FOREVER. And I am finding that people, the same ones who can be so supportive in the moment, experience fatigue over the CHRONIC nature of Cowden’s Syndrome. I mean, there’s a pretty good chance every time you speak to Meghan or I there is a new chapter in the life of medical drama.
Sometimes we want to talk about it. Sometimes we want to ignore it. Sometimes we want to sit under a table in a dark room and cry. Sometimes we want to scream. Sometimes we are sad. Sometimes we are scared. Sometimes it’s an ugly combination of all of the above.
Most of the time we feel lonely and isolated.
Yet, we dust off and keep moving forward. Not in a quest for a medal or accolades, but with the fervent desire to do what we can to live the life we’ve been given to the best of our ability in these often faulty bodies.
A screening scan in August that was less than stellar tipped off a lengthy week in October that will bridge to another surgery for Meghan in January.
One day soon we will share more about it.
But for today I will leave this here…
Whether you are reading this because you know us, or this found its way into your path because you have someone in your life to whom you have said “Just let me know if I can do anything…,” please show up for them. In some way, shape, or form, show up.
I hate a lot of things about cell phones. I love the ease with which we can show up for each other.
Never in the history of text messaging have I seen or heard of someone who felt angry or sad that someone checked in on them.
We got home from the hospital late Friday of last week. After 5 days and 4 nights-her longest hospital stay since she was a toddler, we trekked from Long Island to Staten Island, a 35-mile journey that even at a carefully selected 8PM still took us 90 minutes.
I’m certain we were navigated through every single pothole on the traffic-filled trip. I dodged every self-absorbed speeding lunatic while doing my best to keep from jostling the car too much. I teetered between fervent prayer and fierce anger that I took out in a few temper tantrums at my steering wheel. My knuckles were white (and a little bruised) when we finally arrived home.
While we got her washed off, and I took the most necessary shower of my life, I let a few things sink in.
The week began to replay in my mind and I started to grasp the gravity of what we were in the middle of.
Somewhere between The Waiting Place and Agony I left out that incident in the recovery room. The one after she woke up screaming, they gave her some IV pain medication and something happened. Her monitors are never comforting, as something is always beeping, but I instinctively got Ella out of the way as I watched her oxygen saturation start to dive and hit the 70s. Four of the most authoritative badass women I’ve ever seen moved in a way that assured me they had done this before. They had the oxygen out and there was water and something about making it moist. To be honest I don’t care enough to even look it up. All I know is within seconds of them arriving things went back in the right direction. She slept for another few hours in an oxygen mask and I stared at that monitor like it was my job. That entire incident could not have been more than 30 seconds – but I can tell you everything about that tiny area in the post-op unit. I can feel myself standing there… watching… terrified.
It wasn’t the first scary thing that happened.
The amount of narcotics it took to keep the pain at bay was flat-out disturbing. That, combined with a baseline of POTS which keeps her blood pressure often low and her heart rate often high, caused chaos every single time someone came in to take her vitals. My notes have her 6/5 early AM pressures at 68/37, 74/41… her high that day came in at 91/57. This meant that every single time someone came in, the patient care aide would take the pressure twice. Then they would look very concerned. And when her pulse ox showed at a very unimpressive 94-96 they would get the nurse. The nurse would then take her pressure and page the doctor/ and or the pain management team. Ultimately they would wake her, shake their heads, and repeat the same cycle. Every 4 hours. For days.
There is no solid reason yet as to why her pressures were so low. Like so many other things in Meghan’s life, eventually, people just shrug their shoulders.
That hospital room, with the hum of machines alternating with wails of pain, it was a lot. And I was happy to wash some of it off in that shower.
It is good I can recover quickly after a shower because I am glad I was awake when I set up to review the 7 medications we left the hospital with. It was at that moment I processed why the nurse had asked me if I knew how to use Narcan. I had answered her so matter of factly, she must’ve thought I knew more than what I had seen on a random television show, and she was comfortable when I said “one spray up each nostril.” I guess I was in a haze. I remember asking if it could hurt her, and she said, when in doubt give it. Like the EpiPen training we get annually at my elementary school I had thought, trying to normalize the fact that I was about to drive 90 minutes with my child so drugged up that I was now carrying medicine in case of an overdose.
I laid everything out by my computer and did what I always do when I’m nervous… I organized it into a table. This was likely the most important table of my life. I felt alarmingly unqualified and flat-out terrified.
It didn’t stay nearly this neat as I planned out how to alternate prescription acetaminophen with ibuprofen while separating hydromorphone (every 4 hours) with diazepam (every 6 hours) by at least an hour because both can lower her already low blood pressure. That’s where the Narcan came in. The methocarbamol was for breakthrough muscle spasms but no more than every 12 hours. The Zofran… well because narcotics and nausea…
The first few nights there was something at least every 2 hours. I got into an every 3 hour routine soon after but it definitely was the worst math word problem I have ever solved.
Every simple task was a hurdle. Walking on the crutches when she was so drugged up was flat-out dangerous. Laying on her back with a 3-inch incision on the back of her thigh was virtually impossible. Sitting was not an option as the hip is not allowed to go to a 90-degree angle. The brace created to help with the hip was a poorly designed disaster. But, in fairness, this tumor was rather uncommon.
These last two weeks have left me speechless more times than I care to count.
The day after we got home when I went through the mail, the formal denial of any post-operative stay arrived at my house. Years of experience with this caused me to barely flinch. I three-hole punched and filed it. Today in the mail came this notice, the one they sent after reviewing her POST operative file. If you have any history with hospitals you know this speaks VOLUMES…
Sometimes in the night when she is asleep next to me in the bed, I just stare in awe of all she has endured and continues to endure. I pray for guidance to keep her heart soft and her will strong. I talk to every single angel we have and beg them for signs they are watching.
And then, when I still can’t sleep I remember that her story, this crazy, often flat-out unfair and unreal story will somewhere in her future serve her as she brings her whole life of experiences with her into her own professional life as a physician assistant.
There is increasing time between the terrifying spasms. That’s what I’ve got for today. That and some photos of a really cute Ella who kicked some major butt for 5 days and 4 nights… yeppp she stayed with us!
beatingcowdens 