In short, my body broke in 2011. My hard drive crashed, my wires got crossed, my crayon box lost the primary colors...you get the idea. This blog started as the story of my trip to the Mayo Clinic and how I planned on regaining my life in 2012. Turns out I did regain my life, but not exactly as I planned. This is the story of medical drama, heartbreak, much laughter, and an abundance of gratitude.
My goal for 2015 was to stay out of the Operating Room. Well. I made it to March 23rd?
2 months and 23 days, baby! WOOOOO!!!
I’ve decided this surgery doesn’t count as breaking my goal.
And I make the rules, so ya know, yea…totally doesn’t count.
Reason #1: This was a test, not a repair.
On Monday I had a muscle biopsy of my left bicep. This test has come up for 4 consecutive years, but the medical community has never been sure enough to warrant the procedure. A muscle biopsy is done to diagnose neuromuscular disorders (specifically, in my case, mitochondrial disorders), infections that affect the muscle, and other abnormalities in the muscle tissue. After it came up for the fourth year in a row, by the 23049820398th medical provider, my internist decided it was time to check it off my medical bucket list.
So see…it was a test, not a repair. Totally doesn’t count.
Reason #2: I didn’t go under general anesthesia
And let me just say, rolling out of the hospital 45 minutes after the surgery ended is fairly glorious. In fact, I even made it the full hour and a half home from Hopkins before the numbing medication wore off. Booyea/OW.
On the other hand, I wouldn’t have turned down an option to maybe, ya know, NOT remember the feeling of chunks of my bicep being removed from my arm. A little colonoscopy twilight, anyone?
Reason #3: What was removed will, in theory, grow back
After the four specimens of my “bulging bicep" were passed over my surgically-draped body to the pathologist, he asked me if I wanted to see them.
Obviously I said yes.
Moments later I found it extraordinarily crucial to turn to my surgeon, who was sewing up my arm, and ask if our bodies work like worms.
To which she paused, laughed, and said, “Clearly you were an elementary school teacher. And yes, the muscle will regenerate."
And for that I will send an extra hearty gratitude to the power of the human body, because let me just say (with respect to those of you with a weak stomach), the specimens were not small.
No really. It’s a wonder my entire upper arm is not missing.
Although, now that I think about it, my upper arm is still under a giant pressure bandage and hidden in a sling…. Gulp...
In other news, I’m pretty good at this arm-in-a-sling situation. In fact, this entire blog post was typed with my right hand, while my left hand is celebrating Halloween a bit early by dressing up as a pufferfish. I also got dressed all by myself today! It’s almost like I just had surgery a few months ago, or something.
So...see? I told you this surgery didn't break my goal of staying out of the Operating Room. As you can clearly see from Reasons #1-3, the goal is still alive. Obviously. Whatever people, I make the rules.
The combination of February and March has become a bit of an odd cocktail of sobering and celebration.
A few weeks ago, I marked the four year anniversary of my proverbial "hard drive crash."
In some ways, I feel like it can't possibly have been that long, and in others it feels like at least ten.
It's hard to believe that it wasn't that long ago that I was 30 lbs underweight, lying in a hospital bed at Hopkins, consuming mostly egg whites, rice chex, and an occasional, er, steady stream of gummy bears.
Or when I went out to Mayo in 2012, I still had all of my organs intact. In my naïveté, I thought I would spend a few days in Minnesota and come home with a sparkly little cure.
Looks like I was a wee bit off.
If it's even possible, I think the medical community is more confused by me now then they were four years ago. This very month, I'll see not one, not two, but three new specialists, along with adding a new procedure to my "glowing" resume.
(45 minute registration ending with the very last question of - “You don’t have a pacemaker, right?” I will now start introducing myself as Lydia and Penelope Buschenfeldt…you've been warned.)
I find that I spend an inordinate amount of time dangling between that place of peaceful acceptance and burning curiosity. I desperately want to move forward and live my life in whatever capacity I am lucky enough to do so, and yet, a combination of a progressive little mystery disease and several medical road blocks halt that process every time. The thing is - I don't inherently believe that our bodies break for no reason. I just don’t, plain and simple. I also believe that our bodies can heal if given the opportunity…which begs the question - what's standing in my way? What am I missing?
For four years I have traveled to doctors all over the country. I've been on countless pharmaceuticals, IV therapies, and herbal protocols. I juice and meditate daily, and I hang out with my favorite contingent of old ladies at adaptive yoga. I could write a guide book to alternative therapies. Even with the most restricted diet known to man, I would wager a solid financial estimate that I consume more green vegetables than most, and given my proclivity towards the dear root vegetable, I assure you I have beta carotene coming out of my pores. (It is truly a wonder that I am not orange) I live, sleep, eat, and breathe an unprocessed organic lifestyle, full of love, and hope, and deep breaths.
And yet, the questions remain.
The algorithm that just doesn’t make any sense - Why, when given every opportunity, does my body continue to throw logic to the birds?
How can I really, truly, devote my life to helping and healing others…when I, myself, am not healed?
Or is it because of my path to healing that I am able to do so?
Just more questions.
And so I keep looking, and learning, but most importantly - living.
Living in the questions.
And that, my friends, is something to celebrate.
I've never understood those people that hide their age, or don't want to celebrate their birthdays. They just gloss on over them with a wave of the hand and an uncomfortable grimace.
It just doesn’t make any sense.
Yes, I understand the moment when you realize you have been out of college for 10 years and you can no longer lump yourself in with the “post-collegiate” twenty-somethings.
Or when you realize the little babies you babysat in 7th grade are in college, and your first little campers are married.
I get the fleeting nature of time.
But to truly hide your age and gloss over a birthday?!?
That I don’t get.
I will happily tell the world that this Friday I'm turning 32.
The world has put up with my need for ponies, and markers, and mountains, and bedazzlement for 32 years! (Much obliged, by the way)
I’ve been given the opportunity to be ALIVE for 32 freaking YEARS!
Is there a better birthday present than the chance to live?
I know it’s not given to everyone, and it’s not a gift I take lightly.
And so despite the questions and the off-road medical adventures, I’ll keep on keeping on - putting one foot in front of the other, taking a deep breath, and seeing where the path may lead. And maybe that’s where I can really and truly find, and stay, in the place of peaceful acceptance. For there is peace that lies in knowing you are doing the one thing you can - to keep going.
I’m not entirely sure how that happened. January started all nice and tame, then slowly started spinning a bit, then suddenly whirling around in circles, and then somehow the darn (putting it nicely) groundhog declared 6 more weeks of winter and it’s a new month. Whew.
Also, that groundhog is suuuuuuper lucky we don’t live closer. We would have words. WORDS I tell you.
In any event, you know that show Myth Busters? I think there needs to be a medical version. Ya know, instead of Law and Order SVU, it's Myth Busters - Medical Edition.
Let's give it a try: Episode 1
Myth #1 - Removing an organ removes the challenges associated with said organ.
False I say!
My darling little thyroid left for greener pastures in 2012...and has been haunting me ever since. How an organ likely sitting in a jar somewhere in Minnesota can continue to wreak such havoc is unknown to me, but let me assure you - there is a future sci fi movie there.
(Dibs on a cut of the film...because it's clearly going to be a blockbuster)
In any event, when you remove an essential organ, you remove the offending cancer (always a fabulous thing) and you sign yourself up for a lifetime of taking pills to replace the organ's role in your body. Seems like a good time to point out that your thyroid is like the administrative assistant of your body - the bigger organs think they are important, but really the thyroid runs the show, and controls every single system in your body. Usually over time you find a dose that works, and save for considerable weight gain, weight loss, or hormonal changes, that dose stabilizes for awhile. Unless the word "stable" is in no way shape or form part of your vernacular, in which case you have yet to go longer than 4 months before needing a dose adjustment. Most recently I crushed the record by going from stable to reaaaaaaaaally over-active in a matter of 6 weeks.
In fact, as I was waiting around for my call from Guinness to confirm my record, I got a call from my endocrinologist.
"What on earth did you do over the holidays??"
Ummm...watched "A Muppet Family Christmas"???
Evidently there is a lot of testing involved in confirming my record for Guinness. You see, they are so fascinated by my superior skills, that they want to take a closer look at my brain...ya know, to prepare images for the Endocrinological Hall of Fame, I'm sure.
Which leads me to Myth #2:
An MRI-compatible pacemaker means you can easily get an MRI.
Lies. All lies.
Do you need any contact information for any of the radiology departments in the area? And by the area - I mean within 100 miles of my home?
Don't fret, I have that info. Because I have called them. ALL of them.
In fact, people are so intimidated by the celebrity that is Penelope the Pacemaker, that I called 18 hospitals before someone was willing to accept my bundle of heart thumping joy.
Take note - Phyllis at #4 is grumpy in the mornings, Dionne at #11 just became a grandmother, and Simon at #16 has never heard of MRI-compatible pacemakers. Good to know.
That little symbol on the prestigious membership card for the pacemaker club? Ya know, the one that says "MRI" with a big triangle around it?
Yes. That means I can get an MRI. An MRI on a machine that is made for my brand of pacemaker. Team Biotronik, baby - evidently we are small and (here's hoping) mighty.
Penelope is such a diamond in the rough, obviously, that people don't plan to see her so often. I suppose they have to mentally prepare for her brilliance...and mourn her lack of bedazzlement. So much so, that my appointment to marvel at my brain is in...
(Wait for it)
(Wait a bit longer)
I do hope Guinness doesn't have a time limit or same-state requirement for record confirmation.
Myth #3 - Inserting a pacemaker named Penelope into your body means your heart will be regulated.
In fact, Penelope is so popular that she has been summoned by the cardiologist nearly every week since October.
(Baking them muffins was my first mistake.)
My body has found a way to play games with Penelope - usually taking the form of a pulse of 135 at 2:00 in the morning, or my yoga teacher scraping me off the mat (thank you to the creators of the yoga mat for providing a somewhat squishy surface for my ever so graceful landing).
Hmph. A bit of hazing to the newbie robot-organ, perhaps? Coupled by the ghost of thyroid past?
Myth #4 - When your cardiologist wants to bedazzle you with an event monitor for two weeks, it actually happens
Similar to, say, concert tickets and college acceptance letters, event monitors have a wait list.
A several week long wait list...!?
In fact, this week when I placed my weekly "just want to be sure I'm still on the list" call, it was "kindly" explained to me that "there is a very long list with an unknown amount of wait time."
I mean, Penelope is cool, I get it. I just didn't know she was such a trendsetter. I guess the real question is who wouldn't want to record every funny heart rhythm for two weeks?
Myth #5 - When your husband's team wins the Super Bowl, and it appears as though there has been a volcanic eruption 20 seconds prior to the end of the game, you will be glad you have a pacemaker.
I've decided to give myself a gift this holiday season.
It hasn't held space on my Amazon wish list, nor have I ever written it at the top of a hand-scrawled Christmas list (so it's clearly not a pony).
I'm fairly confident it was not a popular item on Black Friday, nor will it get stolen in this year's Yankee Swap.
No matter how much I wish and hope and dream, I know I won't find it under the tree on Christmas morning - not to diminish the stupendousness of Mr. Claus, but this is a gift that only I can give.
You see, I'm giving myself the gift of uncertainty.
Whether by pure calendar placement coincidence, or otherwise, the holidays come with expectations.
Expectations based on the past year's reflections.
Expectations on how and what you will celebrate.
Expectations on what you will be proud of, the challenges you'll face, and what the dawning new year will bring.
And after spending several holiday seasons expecting a life that has simply not yet happened, I've decided it's not the right way for me to find the true magic of the holidays.
So I'm giving myself the gift of uncertainty.
What happens when we really and truly release our expectations and deepest fears, and become open to all of the amazing twists and turns that life will bring? What if we look at every day as a grand adventure and simply celebrate the fact that we are on this earth and are lucky enough to sit in the first row of our very own roller coaster?
Maybe that's where the true magic lies - in the place where instead of writing the book, we jump into the illustrations and let the story unfold.
I would be lying if I told you that I haven't spent the past 4 consecutive Decembers noodling that the upcoming year would finally be the one where things happened.
My health stabilized.
We got a dog.
Didn't count pennies.
Started a family.
Galloped off into the sunset.
And while those are all still dreams that I will continue to believe in with every fiber of my being, I no longer plan on making them expectations. When I expect something to happen, it gives the false illusion to myself that I'm in control of the outcome - and in this situation, I'm simply not...and that's ok.
In fact, I'm giving my expectation list a total head to toe makeover, including the one in which I still dream of being an Olympic gymnast. I'm 6 feet tall, 31 years old, and am not confident in my ability to somersault...so, ya know, there may be a few items to discuss.
Sure - releasing control is terrifying. We build grand, elaborate blueprints for our lives and though they rarely go according to plan, we still somehow expect them to happen exactly as we imagined.
If you think about it, it's absolutely nuts.
If things did go exactly according to our original plans, I would most likely be betrothed to either my 2nd grade crush (who tragically broke my heart when he moved to Pittsburgh) or Chip - the broken teacup in Beauty and the Beast...who, I'd like to point out, is approximately 8 years old.
Come on...admit it - he is the cutest darn teacup you have ever seen in your life...and his mother is Mrs. Potts!
We build these expectations in our mind of how life is supposed to go, and then when they fall away, we are left emotionally scrambling to climb a mountain that is irreparably falling apart. It's exhausting.
So I'm giving myself uncertainty.
I'm wrapping up the ability to find peace with who I am, right here in this very moment - to find the song in the silence between what we expect and the magic of the unforeseen possibilities.
In truth, I'm letting my spirit do the holiday shopping this year.
So I choose uncertainty - wrapped in bright red paper, with a giant sequined bow.
For in a world with so little in our control, I know that this magical choice is mine.
[Insert girly squeal mixed with the Hallelujah chorus]
After over a month of near house arrest, I busted out the front door like it was my last Economics class in college.
(Well, actually I just had 2 surgeries...so I carefully opened the front door with my non-stitched-together-chest-muscle-arm and then took the steps one at a time so as not to disturb the 7 layers of stitches in my abdomen...but...well...I can assure you it was with much pep and enthusiasm!)
The fact that post busting down the door I drove to the doctor and then immediately came home to take a nap is neither here nor there. I did it myself!
Also most importantly one of the following items did not bust out the front door:
2. Penelope the Pacemaker
3. A gastric fistula
I know. It's the holiday season and I'm asking a hard question to your frazzled brain. My most sincere apologies. I'll give you a hint: it begins with an F and ends with "istula."
Fistula free, baby.
Despite the fact that this fistula formed prior to surgery #1 and took 2.5 weeks to prove to the world (ahem, medical community) that it existed, the timing ended up being rather fortuitous. Even at only 3 weeks old, Penelope the Pacemaker proved her place in the world when I was on a clear liquid diet for over a week and my heart was supposed to just keep beating every minute of the day (I'm so demanding. I like it when my lungs breathe too. So high maintenance, I know).
Let me just assure you, when your only clear options are broth, coconut water and cucumber juice, your blood pressure doesn't exactly top the charts.
Furthered by the fact that my specialty-compounded-yellow-dye-free-non-narcotic-pain-medicine required to be taken with food.
Ya know, to avoid dizziness.
In other news, post surgery #1 I have developed an irregular heartbeat.
Take some time to soak that in.
I think I asked my cardiologist for clarification a minimum of 6 times.
Headline news: "Lady gets pacemaker inserted and develops an irregular heartbeat."
Please refer to the business card: Surprising the world with the rare and unusual since 1983.
Turns out in very rare cases (cough cough, when your name is Lydia Buschenfeldt), it can take up to 3 months for your heart to adjust to an ablation. And in the extra reassuring words of my fabulous (no really, he's awesome) cardiologist: "We don't really worry until January."
Stupendous. Anyone on a first name basis with Mr. Claus, by chance?
I've also been informed that I have officially been sent every single get well card in the Target 99 cents collection, and therefore I have reached my limit for medical bonanzas. So my goal for the month of December is to stay at least 100 feet away from anyone holding a knife and a needle, and whining about the diminutive nature of my veins.
I'm 8 days in, so far so good.
And if this goal should extend to, ya know, more than just December...I wouldn't be mad.
Do you ever have those moments where you stop, slap your hand to your forehead, and realize that you had the PERFECT Halloween costume, and you didn't even know it?
(No? Hmm...maybe it's just me...awkward...)
People. I was dressed up as a Jack-o-lantern on Halloween, and I had no idea! I was so busy adjusting to my state of permanent robot, that I didn't take advantage of the fact that I had a giant hole in the center of my abdomen!
Quite sad. I could have stuffed it with pumpkin seeds, or painted myself orange, or something fabulous!
Because clearly an adult in her 30's painted orange with her arm in a sling, a robotic heart named Penelope, and an abdominal hole full of pumpkin seeds is totally normal...
So I have a hole. In fancy-schmancy words, it's called a gastric fistula, and if we are being more specific, I have essentially created my very own permanent highway from my stomach to the outer world. I can put my dinner on my abdomen, without ever using my hands!
I know, I know! My resume just got a whole lot cooler! I mean, when was the last time you could say that you grew your own highway?
Autograph signing will resume tomorrow. Be kind, I tire easily.
It goes without saying that this is not exactly "the norm." In fact, the medical community has gone out of their way to make sure I really understood the 2% factor over the past 3 weeks:
"Ma'am...this is the radiology clinic. I've been the head technician here for 11 years, but, um, I've never heard of this test, never done this test, and don't have the materials to DO this test...uh...sorry?"
"Wait...what body part are we doing this test on again? Is it a rectal fistula?"
[Insert mild silent freak out over the phone. Um NO very kind sir, it is thankfully NOT.]
"Ok so it looks like you are swallowing this barium to test for a gastric fistula...where is that again?"
"So we usually give our patients a packet of information about the procedure...but...uh...for this we don't actually have one..."
I think I need a new business card that I can hand out every time I meet a new medical professional:
"Lydia Buschenfeldt: Surprising the world with the rare and unusual since 1983. High maintenance, with a side of green juice, and a splash of glitter."
(Clearly written in sparkly font. With bedazzled adornments. And maybe a giraffe.)
Keeping that business card in mind, I'm having surgery.
All of the tissue that has created the fistula will be removed, and then they will sew me up from the inside out, stomach to skin.
Anyone want to join?
Penelope and I did an excellent job of confusing everyone in the surgeon's office, when I showed up 5 days post pacemaker surgery in a sling, moving a bit more like the tortoise than the hare, and requesting to see a surgeon about the hole in my...abdomen.
This really is excellent prep for the holidays, right? I'm losing a portion of my stomach, getting a bit of a tummy tuck, and recovering on a clear liquids diet...bring on the stuffing! Bring on the pie!
So while some people recover from pacemaker surgery with, say, resting or watching movies. Others may be so productive as to take up knitting or reading an entire series. I, on the other hand, recover by creating another situation from which to recover. What can I say, my dad didn't refer to itty-bitty me as "Boo-Boo" (in reference to the massive consumption of bandaids) for nothing.
Under construction, my friends. Restarting my hard drive, one body part at a time.
(And some twice. Or maybe three times.)
It may not be what I planned, and it may not be what I had hoped for, but I'm ready to find smoother roads to travel. Ladies and gentlemen, it's time for this highway to be permanently closed.
She is just a wee little thing, and in no time at all she has completely captured my heart!
Introducing, Penelope the Pacemaker.
We named her Penelope...
Hello? Alliteration? There is no greater literary device?
[What? You DON'T spend time googling "names that begin with a p" while YOU are recovering from surgery? Dude, you are missing out.]
Like many new arrivals, Penelope made a grand, and somewhat off-script, entrance. The plan was to simply slip her under my chest muscle.
(Yes, the word "simply" doesn't often go with "under my chest muscle" but work with me here.)
Instead of slipping into place, the medical team ended up having to slice and separate my chest muscle for placement. The good news is that they thoughtfully gave me some medicine for the pain...that I ended up being allergic to said medicine is neither here nor there...it's all about the intention, yes?
The even BETTER news is that this has all been so much fun that I signed up to do it every 10 years!
You know what they say about bundles of joy - you never remember the pain!
After dear little Penelope made her grand arrival, we spent some time in the hospital so I could introduce her to everyone. Also so I could lower the average age on the progressive care unit by a good 40+ years.
In fact, when I called the cardiologist a few days after surgery, I followed directions and gave them my birthdate and name for identification. When I asked if the very kind woman needed me to spell my last name, she was especially thoughtful to remind me that "no dear, you are the only one in the system born in 1983."
In other news, I'm pulling for a remake of the Jetsons. Ooooo perhaps a musical remake with jazz hands and tap shoes?!?! Clearly I would star as Rosie the Robot.
(On second thought, the tap shoes could prove problematic...)
The day after Penelope was introduced to the world, the Biotronik representative came to my room to check her out. The man kindly chatted with me as he was pressing buttons on a computer.
And then my heart started to have a dance party.
The man controlled my heart by punching buttons into a computer, all while standing 10 feet away.
AND, get this!
After my first device check in 4-6 weeks, Penelope can have her check-ups via TELEPHONE.
I hold up my phone to my heart, and her stats are transmitted via phone.
I. Am. Rosie.
Penelope is not a fan of any source of extra voltage...so I'm going to have to finally put a stop to my habit of spending so much time with the ignition of my car, and operating power tools.
Always did have a soft spot for the miter saw.
I did a bit of multi-tasking during my day at the hospital spa, and also had a catheter ablation. This procedure used cryogenics to freeze a portion of the wiring around my heart, and treat AV Nodal Re-Entrant Tachycardia. I've had some funny heart rhythm dance parties in recovery, but not all robots adjust overnight, and let's be honest - Penelope is cause for hearty applause, yes?
It also appears that the medical world got a little bit nervous that they wouldn't get to see Penelope and me on a regular basis (gosh, it's always about her!)...so to reassure them, my feeding tube stoma decided to burst open two days after my surgery.
Rest assured, this happens in 2% of patients.
Some people recover from heart surgery by lying on the couch and reading magazines...I like to add in fun things like esophagrams, fistulagrams, and a visit to the friendly neighborhood surgeon.
(And yes, my dreams have been dashed to discover that neither the esophagram, nor the fistulagram, include anything similar to the opening of a musical greeting card. They don't even include glitter. This medical world is a SHAM.)
I know it's November, and the start of a busy holiday season (I saw Santa the other day. It was November 6th?) but if you had a spare moment or two to think some good, quality "no surgery" thoughts, Penelope and I would be most appreciative.
But perhaps more importantly, friends, we have a bigger and more difficult assignment.