reflection

Living Out Ultreia

A Memory

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Savoring guava juice and a peach at a stop along the Camino.

Once upon a time, when I thought the lump by my collarbone was a lipoma, I walked 500 miles from France to Spain.

I have to be honest with you, most days I forget it happened. That speaks so much to the human condition, doesn’t it? You accomplish a dream, you finally get the material object you want, you finally end up in that happy relationship that you want – and its meaning slips away. You begin to wonder what’s next.

For several years, that 500 mile journey called the Camino de Santiago was my dream. Then I did it, my life radically a few months later, and now it seems like a part of another person’s life. It was not even a year ago when I set off from St. Jean Pied-de-Port with one of my dearest friends and embarked on over a month of walking. There are days when I do not recognize that strong, healthy woman smiling, sunburnt and dust-covered in those photos. It was hard, but despite being only partially aware at the time, I was experiencing the vibrant fullness of being human.

I read recently that the experiences of our elders, our generations past, live in our DNA. Isn’t that wild? Somewhere, encoded in the basic scientific cells that make up our bodies, live the heartache, the loss, the beauty, and the striving of our ancestors. It puts in mind another amazing phenomenon: when individuals with Alzheimer’s and dementia are played music from their past, and suddenly, though this person may not have even spoken coherently in years, lyrics start to ascend from lips to the heavens.

We know, deep down, who we are. The world will try to tell us otherwise, but if we try hard enough, we can remember.

Forgetting

I’m fairly certain social media is a black hole that launches us into forgetfulness. It’s a vortex that pulls you through and flips you inside out until you forget what time it is as you look at pictures of better meals than the ones you make, someone better looking than you are, adventures that are better than those you’ve had. It’s not all bad: Instagram and Facebook have been a lifeline for me in the wake of my diagnosis. I’ve made “friends” with desmoid patients from all over the world, despite never having met a one in person. But the negative force of the vortex is strong.

After the news that my tumor had not grown, I was shocked at how quickly I fell into that pit of jealousy. Comparison is the thief of joy, and I was bereft of any excitement in less than 24 hours. I sat bitterly staring at this tiny phone screen, watching as friends and peers and people I’ve lost touch with share that they were cast in shows, starting families, or doing ordinary things like going on a run. These people had done nothing to offend; they were simply living their lives. Still, I found myself filling with resentment and seething with jealousy.

I’m aware I project a pretty positive attitude in public. It’s no less real or valid or “me,” but it’s only half the story. I am grieving in some way every single day. Some days, it’s the flinching recognition that my yoga mat is collecting dust in a corner. Others, my restless thoughts spin inside my head. How did I pull the short straw? Why do I need to focus on just living when others are thriving? My life was once that easy too. What the hell did I do to end up here?

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A self-portrait: two weeks after being told it was a sarcoma, two days prior to my official diagnosis.

Remembering

One day before our final walk to Santiago, I was sick – really, really sick. Other pilgrims walking the Camino had been walking in and out of the room until well after midnight, and when they finally slept, it was a symphony of snoring. I had oily spinach and eggs the night before, poor fuel for a vegetarian completing a day of waking in August heat. A fever was brewing that would rage on well into the next day. I was determined to get into Santiago, even if it meant crawling on my hands and knees, but I seriously doubted that I had the strength to do it.

There’s a rush of pilgrims, or as they’re called in Spanish, peregrinos, who join the Camino only for the last 100 km. While everyone has a right to their own Camino experience, those of us who had already been walking for four weeks could get annoyed at these “tour-ogrinos” pretty quickly. Many of these latecomers were inclined towards drinking heavily, talking loudly, treating this religious pilgrimage as a holiday.

Around 10 AM, my walking partner and I stopped at a bar to get a Coke and hopefully a tortilla, a hearty Spanish frittata, to fuel the rest of our day. The bar was crowded, and judging by the cleanliness of most of their boots, they hadn’t been on the trail for long. I was feeling awful and the expression on my face warned anyone within several yards to stay far, far away. So naturally, one man who had just ordered a round of shots for himself and his friends came up to us at our table. He lunged his head forward, alcohol and smoke on his breath. He smiled and piled on the bravado, announcing, “You see, my friends and I, we will smoke and drink all day, and we will still get to Santiago before you!”

When I spoke, it was without pause, with a voice I did not recognize. It was thunderous in tone, yet restrained. This was the voice of a fierce warrior, one who pulled no punches and took no prisoners. This was the voice of someone who had nothing to prove. I stared him down, my nausea and fear cast aside, and responded unwaveringly.

“Yes, you may. But I walked here from France.

I can’t remember what his reaction was. I believe it was something akin to a half-sneer, half-smile, perhaps a smug chuckle as he sauntered back to get his drink. It doesn’t matter what his reaction was. What mattered was that I found this new, steady voice that I didn’t know I had within me.

I arrived in Santiago two days later.

A Reckoning

This recollection surfaced at just the right time, as I was neck deep in my present-day social media binge. I stumbled upon the honest reflection of a fellow peregrina who had arrived in Santiago on a Camino facebook group. The post was translated from German courtesy of an auto-translator, but the words ring true in any language.

I don’t know how many steps I’ve gone physically, mentally and psychologically on my way. However, in the last few years I have learned so incredibly much about me, living, incredible, wonderful, sad and fulfilling stories and experiences, which fills me with deep gratitude.

The Camino never ends in Santiago – the actual journey takes place to a large part in the interior and begins afterwards. My truth, my experience. Don’t believe me a word, feel it, take something for you and leave the rest. Trust yourself and the way. It’s all there. Always.

To all the people who have supported me for the last few years, all camino angels and also all the ass angels who have often made me mad. Thank you, because through these experiences I grow. And I’m here for that. I don’t cry tears of grief.
I shine. I’m happy. I am.

— @wild_one_walking

It took reading this post to remind myself that it’s all there. Always.

I am no longer in Spain. Hell, I am not able to lift a full Brita pitcher without two hands and take off a tshirt without getting caught in it, let alone audition for shows or run a 5k or walk across a country. Most days I make myself a smoothie and then drive in traffic, trying to get to work on time. I give my students as much heart as I can muster, then come home to walk my dog, make dinner, do dishes, and maybe watch Netflix. It’s not the existence I am accustomed to or one I’m particularly proud of.

But I am still here. And though I forget the significance of that very fact as I trudge through this new normal, after a while a voice inside fiercely whispers the truth. The words cut through the anger, fear, rage, bitterness welling up and spilling over: I walked here from France. I walked here from Spain. I walked here after being told it’s a soft tissue sarcoma, from a conversation about taking out bones and muscles and tissue and sinews, and from a discussion of how I would be stitched up and pieced back together like a jigsaw puzzle. I walked here on chemo. I am walking through hell and some days I feel transcendent, one of those spiritual firewalkers, and others the embers burn my feet so badly I cannot imagine going forward one more step.

And yet, here I am. Isn’t that something.

The word “ultreia” is seen often on the Camino. It’s an old, old word, mentioned in the 12th century Pilgrim’s guide called the Codex Calixtinus. It’s something pilgrims would say to one another in greeting, meaning “keep going” or “beyond,” encouragement to head onwards to Santiago, or perhaps, further.

When I said this word on the Camino, my eyes were on Santiago. Now, my destination is unclear, a blurry spot on the horizon or even somewhere past. But I must keep going and go beyond. It will not be easy. I am bruised and battered and broken. I can’t do the things I once took for granted. But here I am, continuing onward and beyond.

Ultreia.

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treatment

Zero to Eighty

 

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Photo by Angie from Pexels

 

The past two weeks have been an absolute roller coaster. There were highs and lows- even a few actual nausea bags, thrown in for authenticity.

Let’s recap.

May 3rd – Setting the Bar Low

I had my root canal. Even though it was unofficially ok’d in a message, the oncologist’s office never sent the forms over to the dentist, so I spent 35 minutes playing Nancy Drew trying to find someone to write a letter stating I was approved. The office was none too pleased.

* This is an important thing to remember if you know anyone with any kind of chronic health issue: we spend LOTS of time on the phone tracking down doctors, paperwork from doctors, or obtaining authorization to see doctors. Please give us a pass if we get off the phone and seem irritable and/or frustrated.

Thankfully, my mom reached someone at UPenn around 9:30 and an official approval letter was sent via email. (My oncologist, who is great, later sought me out to give me an apology over email and in person. ) As soon as I let the staff know “the letter’s on its way!” they stuck the numbing QTip on and got to work.

The root canal was exactly as you expect it would be: painful and awkward. Let’s not spend too much time lingering on this event, lest we conjure up any memories of dental work past.

I left and was back at work by lunchtime to run a rehearsal for our fourth graders.

May 4th – Climbing to New Heights

I watched my fourth graders take the stage in The Lion King KIDS. Let me tell you, it was remarkable. (I don’t consider this a biased stance, because I had very little to do with it. The way I see it, if you do the right kind of work as a director, you mostly pose questions or considerations and run away, leaving the actors to find the right solutions.)

I mean, c’mon, look at these photos!

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The Circle of Life continues!
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Visiting the “Elephant Graveyard”.

They made me very, very proud, and I was very, very happy.

May 5th – Still Ascending

May 5 was my 29th birthday. I checked on the DTRF donation page and was blown away. My little $500 goal had been met – seven times over. 

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It’s pretty safe to say I’m still in shock.

I don’t have the email addresses for everyone who was generous enough to donate, nor the time to thank each of you as personally and as thoroughly as I’d like. Please believe me when I say, each and every donation means so much to me. I just don’t have the words to thank you enough for all you’ve given. I am eternally grateful and indebted to your generosity.

May 6 – The Peak

I threw myself a ridiculous unicorn-themed brunch to celebrate what I’d like to call the “Victory Lap” of my 20’s (aka, age 29). I wore an outrageous unicorn crown that I made, ate unicorn cupcakes and other rainbow-themed food, and felt the love of being surrounded by family and friends.

 

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A peek at the outrageous, wonderful crown that happened.

 

May 7 – Freefall

Overnight, I caught a lousy stomach bug. After a few hours, it passed, but I woke up feeling tired and irritable. I had arranged for a substitute teacher so I could take the day off work and attend a follow-up appointment with my oncologist.

On the way to the appointment, my Mom voiced her concern that my tumor appeared larger. I honestly have little way to gauge the size of it: I see it every single day. During my appointment, my oncologist agreed that it looked slightly larger. He agreed that I needed to get an MRI, preferably that week. The doctor also said I had a decision to make. Either stay on Nexavar if I could manage the side effects, find an alternative oral medication, or head to surgery.

This made my stomach drop. Really? We were still talking about surgery? The tears began to make an appearance when I told him, under no uncertain terms, did I want to try surgery before exhausting my other options. Thankfully, he wholeheartedly agreed. I decided to stay on my current medication and adjust my expectations for my lifestyle. I’ll take tired, sore, and nauseous over cut open, please and thanks.

The ability to hold to that decision, however, was contingent on the results of that week’s MRI. My insurance required pre-authorization on the request, and once that was in, I’d be good to go.

May 8 – Another Drop

Tuesday started as a normal day. I went back to work, had a normal breakfast and lunch, but by the afternoon, I was locked in a heated battle with my insurance company. They directed me to an outside company which handles authorizations, and that company rep claimed that they did not have the information needed to process the MRI request, even though UPenn had already sent over office notes. I then made numerous calls to both the authorization company and UPenn. It was infuriating.

*Remember what I said earlier? Please be patient with your family and friends who have chronic or severe health issues. They make these phone calls weekly, if not every day.

By Tuesday night, I was feeling tired and not too hungry. By midnight, that “not too hungry” became violently ill. This thing took hold of me by the ankles, shook me violently, and left nothing but the good sense to send a text to my mom.

 

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I call this one, “Still Life: The Virus.”

 

May 9 – Leveling Out

My mom arrived on the scene by six AM, with cleaning products, Coca-Cola, Gatorade, and bread on hand. She gave me a bit of flat soda to make sure I could keep down liquids, then drove me back to my parents’ house where I could rest and not worry about taking out the dog on my own. (Valuable, as I couldn’t stand straight.)

I don’t remember too much about that day, other than my family taking care of me. I won that family lottery, in case I don’t say it enough.

The only silver lining of that day: I got an appointment for an MRI the next day.

May 10 – Beginning to Climb Again

I had my MRI. It was quick and relatively easy. I listened to some Michael Jackson on a Pandora playlist and held my breath when the technician told me to, and then it was over.

I kept down a few pieces of sourdough toast, some water ice, and by evening, even some rice and beans. (My sister, the insightful nursing student, stopped me from adding sour cream.) I got back to my apartment that night for another solid night’s rest before heading to school the next morning.

May 11 – Another Peak

What a beautiful day, right? I was feeling able to eat for the first time in a few days and put on my favorite dress to celebrate.

I kept myself busy while I waited for the phone call with the results of my MRI. At 3:30, as I was leaving work, it arrived: my oncologist confirmed there has been no significant growth of my tumor. (Cue the confetti!) He said while it may have grown a hair, it’s essentially still the same, so his recommendation was to stay the course with my current medication and get scanned again in three months. I happily agreed and said I’d see him for my monthly appointment in June.

For those of you without great calendar skills, three months of treatment puts me as due to be scanned in the middle of August. Other desmoid patients who have been treated with Nexavar have seen results between 6-9 months, so this scan might not show anything significant, which would still be OK by me. Let’s be real: is this truly great news? To a cynic, probably not. (I see your point, I’d rather not have this tumor, quite frankly.) But after the low bar of achievement was set, on top of thinking I was headed to the operating room, this was like finding out I had won the lottery.

Exiting through the Gift Shop

I’m still making sense of this whirlwind of two weeks. For now, here’s what I’ve got in hand:

  • A fundraising campaign that’s far surpassed all my expectations
  • Another musical production under my belt
  • Reassurance that my family and friends are not going anywhere
  • The knowledge that my tumor’s just fine, for the time being

This weekend, I think I will celebrate. My body’s not quite ready for champagne, so for tonight, it will be some of my other favorites: a great book, some self-care, and my pup at my side.