appointments, experience, treatment

An ER Visit and a Chance Meeting

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Fabulous rainbow image courtesy of pinterest.

I spent last night in the emergency room. On my list of things to do during the last week of school, this ranks far down towards the end, perhaps just above “give my kindergarteners espresso.”

First, some background. With my medication, I’m nearly always experiencing some form of nausea or loss of appetite. I’ll eat very little at a few meals, unable to choke down foods I previously loved; then I’ll be hungry a few meals later and try to eat as much as I can to take advantage of that window of opportunity. I have to eat even when I don’t feel like eating, which for anyone who has experienced it before, is a complicated issue. I’ve had people comment to me, “I’d love to have that problem!” or “It must be nice to feel like you can lose some weight.” These statements are really hard to hear. If I had my choice, I’d rather feel strong and healthy over sick and skinny, desmoid tumor or not. I suppose the “weight loss” impact might seem appealing, but without nutrition, my body doesn’t have the fuel it needs, which is exactly what happened this week.

At times my nausea is improved by eating (counterintuitive, I know) or at least subsides after a little food and a lot of rest. I spent Sunday laying low in my apartment: I did not feel great upon waking, but I managed to eat some oatmeal by the early afternoon, took a nap, finished a book, and felt better. On Monday, little appealed to me at lunch, but I made one of my go-to dinners: a falafel wrap with spinach, cucumber, tomato, and goddess dressing. I got to bed a bit early and decided I’d discuss the nausea with my oncologist the next day at my monthly appointment.

I never got to that appointment, because I was soon experiencing what I assumed as Stomach Virus Number Three of the past 30 days. I sent a text to my sister Jenna, who was scheduled to attend the appointment with me and is currently in nursing school. When it was clear that the virus was not letting up, she and my mom drove up to my apartment in the early hours of the morning. (I’ve said it before and I’ll say it again: my family is the greatest.) They took turns caring for me for the ten hours I was actively sick, looked after my super confused and anxious dog, and tried to catch some sleep ON THE FLOOR and on my couch. (Seriously, who does that? I can’t say enough how lucky I am.) When I was well enough to be in the car, they brought me to my parents’ house.

For two days, I had the ultimate recovery fake-out. I’d be fine during the day, eat a piece of toast and drink Gatorade, and send an email to my boss saying “should be good for tomorrow!”, only to end up sick that night. Finally, my oncologist’s office offered to get me a spot sometime the next day for an infusion of fluids and anti-nausea medication. They called in an oral anti-nausea medication and an anti-spasm prescription for my stomach cramping. But when I couldn’t even keep that down, my Mom went into “Mama Bear” mode and gently, yet insistently, offered to take me to the ER. We have an agreement: both of us always respect the other’s choices, but there will be times when we can straight up insist on having the final call. I knew I was in no place to make decisions about my care, so she googled which emergency room had the shortest wait, and off we went.

So, that’s how I ended up hooked up to an IV bag with fluids to hydrate me, anti-nausea to ease my belly, and morphine to take the edge off the pain. I finally felt some of the relief I deeply craved, and I remarked to my mom that it was the best choice I’d made in days.

Shortly before I was discharged, I would discover the full truth of that statement. One of the attending nurses on duty walked in and introduced herself. She had read about my medical history and said she had to meet me. Why? She herself had a desmoid tumor. I was floored and blinked twice to make sure this story wasn’t crafted by the morphine I’d been administered. As she worked on my discharge paperwork, she shared with me about her diagnosis, her surgery, and about her life five years later without a recurrence. Having only met one other Desmoid Tumor patient before (hi, Dakota!), this unscheduled and unorchestrated meeting was completely out of left field – and confirmed my belief that the ER was the best choice.

What’s next? Good question. I don’t really know. I’ve got another appointment with my doctor to discuss changing my medication. Since my white blood cell count was good on my latest labwork, it could be that these bouts are not actually stomach viruses, but a side effect of my medication. My oncologist advised me to stay off my medication until we can discuss it in more depth.

For now, I’m happy to be back on the couch with Fixer Upper reruns, water to drink, and slices of banana to snack on when I feel up to it. It’s been a wacky week, but as I’m continually reminded, living with this diagnosis means nothing that ever goes according to plan.

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.

treatment

Detour.

Did you know chemo can cause issues with your teeth? I didn’t- But now I do!

Because I need a root canal.

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Musical theatre reference courtesy of Steve Martin. Image courtesy of pinterest.

Here’s the scoop: I’ve had a spot of sensitivity since my last cleaning in December or January. (Who really knows when; it’s all a blur.) Then I got diagnosed, started my medication, and bam!  Excruciating pain since last Friday. My oncologist advised me to hold off on my medication to see if it was a side effect. No such luck. I went to the dentist this past Wednesday. I was x-rayed and the proclamation was made: it was time for a good old-fashioned drill party. (But first, I needed my doctor’s approval and over a week of antibiotics to make sure an infection doesn’t occur.)

Evidently, when you are on my medication, it can cause dry mouth. Not a huge deal, but your saliva is actually a key player in making sure debris doesn’t hang out in your teeth for too long. (Everything bagel or not, all food needs some help.) No saliva leads to more hidden issues, which leads to more cavities. Or in my case, do not pass go, do not collect $200, get a root canal.

This Thursday, I’ll have my tooth root-canaled (is that a verb?), head into school to run a 1 PM rehearsal, then hopefully get cleared to start my medication again.

By the time I get started again, I’ll have been off my chemo meds for about two weeks. That doesn’t seem like a lot, but even if my tumor hangs out and doesn’t grow in that time, my body already has no idea which way is up or down. Right now, it’s having a full out MTV Spring Break of a time. “No medication?! Awesome! Here’s your energy and appetite back! Go wild!” Next week, I’m anticipating a bit of a challenge as I get acclimated all over again.

I’m trying to think of this as less like a road block and more like a detour. I have a lot of great things to focus on: the astounding progress we’ve made with the DTRF Fundraiser, the great retreat I went on this past weekend, and a musical opening this Friday that I’ve been working on since November. I’ll be honest though: even when I feel Pollyanna about it, I’m still in more pain than I’d like and have developed a borderline addiction to Orajel.

The moral of the story: if you have a diagnosis like mine, even when you brush and floss, expect the unexpected. The detour will arise inevitably. Best advice I’ve got at this point: pack easy-to-chew snacks and have people you like along for the ride.

Uncategorized

#unicornsquad birthday fundraiser!

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My Unicorn Squad shirt is my go-to. It never fails to spark a conversation or a smile!

My birthday is coming up in two weeks. (Thanks Mom for giving me an easy-for-others-to-recall “Cinco de Mayo” birthday! Also, I’m sorry for hanging around for so long when I was due in mid-April.) I’m turning 29, which is not a milestone birthday by any stretch of the imagination, but it’s the most special birthday to me so far because I’m alive. And that means an entirely different, more wonderful thing than it has in years past.

I kindly decline presents or cards, but if you feel inclined and are able, I’d truly appreciate donations to my fundraiser for the Desmoid Tumor Research Foundation.

This post is hard for me. I don’t like asking for things and just writing about this makes me feel vulnerable and a little of self-serving. But the DTRF is the best chance I’ve got for effective treatment and long-term care, since they’re the only organization in the world dedicated to the research of my diagnosis.

The DTRF is a small organization and fundraising is key. Here’s why every dollar counts:

  • There is no FDA recommended treatment for Desmoids.
  • My doctors don’t know how Nexavar, my chemo medication, works.
  • Currently, the most “cutting edge” research is that Nexavar is more effective than a placebo.
  • I believe that with more funding, we can do better than that… and truthfully, I need us to do better than that.

There is no such thing as “only $5. Trust me, that’s $5 closer to me keeping several bones and muscles, figuring out a way I can get treated, and even making it possible for me to do a cartwheel again or not get stuck in a hoodie as I try to take it off.

I’ve created a fundraising page where you can make a donation to the DTRF and their annual 5k, Running for Answers. There are so many worthwhile charities and causes out there, but this one in particular has been my lifeline since February. I would love to make sure all patients with this rare diagnosis are served in the same way.

Most importantly: thank you, thank you, thank you for all of your constant kindness and support. Your comments, text messages, and phone calls have proven to me, time and time again, that it’s possible to live an extraordinary life even when your life has been turned upside down by a diagnosis. I am unfathomably lucky.

Click here to donate – and l will do a dance in your honor! (Honest to goodness. Footage available upon request.)

guidance

Let’s Play Taboo!

Hello from the final stretch of my Spring Break!

I got out of dodge just in time to avoid that latest snowstorm and enjoyed some traveling and some sunshine. I squeezed in time for a second opinion on treatment as well: an update on all that will come soon.

With the sand of the Atlantic and Pacific beaches freshly shaken from my flip flops, I encountered that common experience of coming home from a vacation and being smacked in the face by reality. Instead of denying it exists or shoving it in some emotional drawer, I decided to do what I find helpful: make it a blog post, so we can all get uncomfortable together!

 

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Just in time for your Easter or Passover gathering!

 

Drop It Like It’s Hot Not Socially Acceptable to Discuss In Public

There are some topics people advise you to avoid at dinner parties and in polite conversation. Cheif among them are money and religion. We all have some relationship to both subjects, even if it’s a lack thereof.

I don’t mind talking about money because I’m a millennial who likes avocados. (If what I’m saying sounds strange, read that linked article. It’s a riot.) To top things off, I teach theology at a Catholic school. I’m well on my way to being the rudest person ever! So in the style of the 1990s Real World, let’s “stop being polite* and start getting real.”
(*As a personal side note, politeness is a personal tenant of mine. In this instance, we can replace polite with “taboo.”)

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I’ll use any excuse I can to make a musical theatre/Liza Minelli reference.

Money
I get medical bills in the mail constantly. 

Every single one makes me panic a little and/or cry. Yes, even though I have health insurance from my employer. Yes, even when I have someone explain it to me. Yes, even while I understand medical care is expensive and qualified people need to be compensated. (It doesn’t help that my policy is technically two companies with separate plans and they don’t communicate with one another, but that’s for another day.)

Medical debt is the leading cause of bankruptcy in the United States. Let that sink in for a bit. It’s absurd. Many of you may already know it. While you are busy saving your life, you are pretty likely to lose your shirt.

When you have cancer, you are constantly paying medical bills. Yes, even though you “beat” it. Yes, even when you are “in remission.” Yes, of course, I’m happy just to be alive. But my expenses have changed drastically. My diagnosis in particular has an extremely high recurrence rate: 30% have a recurrence within five years of initial diagnosis. I will be cut open, treated, or at the very least, scanned every year for the rest of my life. That means I will likely reach my maximum out-of-pocket expense for as long as I live- regardless of what insurance plan I have.

I am a teacher. No one gets into teaching for the money. The money that I started to put aside for a (tiny) home is now dedicated to keeping me healthy. Here’s where things get complicated: while I admire the lifestyle, I am determined not to live like a monk. I want my expenses to be a reflection of life and not a fear of death. My trip to California made me feel great, gave me memories, even alleviated some of my side effects: worth it. A private restorative yoga session with an amazing teacher helped me find some peace with my body: done.

This is not a money grab nor a plea for sympathy. The reason I’m being vulnerable and borderline uncomfortably honest with you is this: those gofundme and youcaring sites asking for help with medical bills are not for people who are any less hardworking or deserving than you and I. They are for people who need help to make ends meet when life has not gone according to plan. If Notorious B.I.G. taught me anything, it’s that money doesn’t solve problems,  but it can alleviate some worries. When you have a diagnosis like cancer, you’ve got enough to worry about and money, unfortunately, is nearly always one of them. Have faith knowing that if you are moved to donate, you’re contributing towards a peace of mind that allows people to focus on their disease and not their declining bank account.

 

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A Disney and a Shakespeare nod in one? Double win.

 

Religion
People will say things that hurt, even when they don’t mean to.

I didn’t give anything up for Lent this year. Instead I practiced patience, especially when people said things that were hurtful. (“Father, forgive them, they know not what they do.”) There is not a lot in my life I can control, but I can start by bettering myself.

There are people that look at me with pity, as though a bell will ring and I will get my angel wings at any moment. I observe them looking for signs that I’m healthy or that I’m not- I’m fairly certain I more or less look the same as I did a few months back. I don’t fit the “bald and brave” image of a cancer patient that may come to mind given television, movies, or even personal experience. I know this reaction is well-meaning and coming from a good place and usually more about the other person than me. Maybe it’s bringing up painful memories of loved ones with a similar struggle or their own fears of mortality. I get it. I was there once, too. They’re scared, that’s okay.

To counteract that, I like to be one step ahead of the joke. I’ll lift something potentially heavy and quip, “I should use this arm while I’ve got it!” Or, as previously mentioned, I don’t use traditional household cleaners, and I’ll justify it with “using them is linked to causing cancer.”

Other times, people say things which unintentionally minimize my struggle. “Look on the bright side!” kind of comments or comparing suffering is not always helpful, even when well-intentioned. Yes, I sometimes make “it can always be worse” comments because some days that’s where I am. But on the days when my fingers feel like they’ve been shut in a car door or I have no appetite and the thought of eating anything makes me sick, I’m not interested in the bright side.

When this happens, I remind myself to take a deep breath. I use what Brene Brown calls in her book Rising Strong the “hypothesis of generosity.” Brene suggests that you ask yourself in these challenging encounters, “what is the most generous assumption you can make about this person’s intentions or what this person said?” Often I come back to the same conclusion: it’s more about the other person than it is me. The people I love don’t want to see me suffer any more than I do, and it’s more comfortable to think that things can always be worse. Or there just might not be words to capture what either of us is feeling: cancer’s awkward.

In Christian tradition, today is Holy Saturday. It’s the day between Good Friday, when Christ’s death is recalled and Easter when the resurrection is celebrated. One of my favorite Jesuits (yes, I have favorite Jesuits) Fr. James Martin puts it this way: “Most of our lives are spent in Holy Saturday. In other words, most of our days are not filled with the unbearable pain of a Good Friday. Nor are they suffused with the unbelievable joy of an Easter. Some days are indeed times of great pain and some are of great joy, but most are…in between.” My days since my diagnosis have become mostly a Holy Saturday type of day. I’m wedged between the grief of knowing my life will never be the same and the astonishing bliss of simply being alive.

True faith, to me, isn’t about either/or: it’s about both/and. Things don’t fall neatly into the categories of good or bad. Life can be painful and hard; it’s also astonishingly and profoundly beautiful. Cancer is a burden and a teacher. Money is a blessing and a curse, religion is hard and it makes somethings easy: talking about them is uncomfortable and necessary.

Whenever I leave this place, I hope I leave it better than I found it. It’s my hope that I can use this complicated mess I’ve been handed and become a force for understanding – this little blog my attempt at that. Perhaps it goes without saying, but without readers, it would just be a call out into the digital void. (If a blog is posted in an empty forest and no one is there to read it, does it make a sound?)

Thanks for reading, and if you made it through this whole post, thanks especially for getting uncomfortable. Stay tuned for my next entry: racial justice and politics! (Just kidding… though I do talk about those things often! Feel free to reach out if they are of interest to you as well.)

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One Month Out

March 15 gets a pretty bad rap, historically speaking. At the very least, it’s likely full of bad Caesar Salad jokes.

Dressing cracks notwithstanding, today represents three things in my cancer adventure: a chance for check-in, celebration, and reflection.

Check-In

I started my morning with a follow-up with my oncologist. It’s been two weeks since I’ve started an oral chemo drug, and so far, my side effects are manageable. There’s the usual cast of characters: decrease in appetite, fatigue, muscle aches, and nausea. There were some surprises thrown in for good measure. For a few days, my fingers felt like they were constantly being pinched by clothespins around the mid-point of my nails. (Lovely!) While that’s gone away, the soles of my feet are now really sore. It’s painful to walk barefoot, so I’m keeping slippers on when I’m at home and temporarily trading patterned socks for my padded running socks.

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I shudder just looking at them.

I’m cleared to continue taking my meds and we’ll meet again in a month.

A Celebration

Side effects aside, today is a celebration of sorts. You may recall that before my oncologist suggested I try chemo first, my thoracic surgeon had tentatively scheduled my surgery for today. (You can read all about that conversation here.) Instead of starting my day with Honey Bunches of Oats and a cup of coffee, I could have started it at Penn Presbyterian, preparing for a ten-hour surgery.

My sore feet are a small price to pay for the extra time and hope chemo has given me.

A Reflection

Today marks one month since I received my diagnosis. Writing that seems like an impossibility: only a month? Time has become an elastic concept: it stretches long as I wait for appointments or phone calls, then snaps inexplicably short when I try to remember a time before desmoid tumor statistics rolled off my tongue like familiar lyrics to a reverent song.

While it’s true that a diagnosis like this changes your life irrevocably, I’ve marveled at the unexpected ways that my life has remained unaltered.

What’s Changed

1. I’m relieved to know what I’m up against.
For months, I pinballed from appointment to appointment, telling the same story each time to a different doctor. I was told to do rotator cuff strengtheners, take anti-inflammatories, consume more Tumeric. Most doctors were compassionate. One scoffed at my distress at the news that no lipoma was found after two hours in the operating room and later implied I was overly emotional. I was beginning to believe that the problem was somehow mine.  Thankfully, the team at UPenn took me seriously, ignored the fact that my bloodwork showed no warning signs, and got me in for a biopsy, plus specified scans and testing.

For two weeks, I waited for biopsy results, wondering what kind of time I had. Those two weeks were the hardest. No amount of immersing myself in work or distracting myself with Netflix kept the fear at bay. When the news came and my doctor told me what the pathology revealed, I was surprisingly calm. I immediately hopped online to do research. I made phone calls to family and friends. I found an incredible, supportive facebook group for patients with desmoid tumors.

Most importantly, I began to make peace with something that had been a part of my body for months and finally, finally had a name.

2. I’m asking different questions.
Decisions and considerations I never expected to make at age 28 have become important. What’s the process to go on disability? Will my treatment someday impact the kind of family I could have? What’s a good name for a cancer treatment blog? My amazing crew, now deemed the Unicorn Squad (thank you, Bonnie!) have listened to the questions I’ve felt brave enough to voice and helped me prioritize questions and navigate the answers.

I’m not writing my own obituary, by any means.  But I’m certainly soul-searching, asking questions, and flagging potential decisions I’ll need to make to ensure the contents are every bit as awesome as I dream them to be.

3. I’ve reconnected with many old friends and made some new ones, too.
Have you heard that analogy that compares each person’s life to a pebble on the surface of a still lake, casting out ripples that stretch far and wide? (Well, if you hadn’t before, now you have!) It’s been true for me, of late. My inbox has been populated with emails of support from teachers I had in high school, colleagues of my parents, friends of my siblings, and friends with whom I’d lost touch.

I’m relieved that despite my faults and flaws (both those I am humbly aware of and those which I’ve yet to discover), I have not been a complete Scrooge McDuck.

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Humbug.

4. I’m crying more, but not because I’m sad.
You know that Hootie and the Blowfish song? Darius Rucker croons in his signature baritone, “I’m such a baby cuz the dolphins make me cry.” Well, Darius, we’re two peas in a pod. As a self-identified sensitive person, I have always been emotional. I remember crying like I was experiencing a mid-life crisis the first time I heard “Rainbow Connection” in elementary school.

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Candid photo of me when my student said something heartwarming in class. “Talk among yourselves.”

I’m less ashamed now of my rich emotional life (what a theater major term!) but in recent weeks, the tendency to get choked up has increased. I’ll catch my students making beautiful moments on stage, overhear them wishing out loud that they had drama every day, or God forbid, Louis Armstrong’s “What a Wonderful World” starts to play… suddenly, I’m the Mom in a car commercial, watching her baby pull away from the curb in a safety-standard sedan. When news got out at my old middle school, where my Dad teaches, one of his eighth graders came up to him. Clearly emotional, he started “Mr. Kos, I don’t have a lot of money… but if your daughter needs anything…” Oh, my heart. I can’t type this without becoming verklempt!

So if we talk and I need a Kleenex, never fear. My tears are often an outward, salted expression of my gratitude.

What Remains the Same

1. I still consider myself a healthy person.
I’m protesting the word “sick.” As one of my favorite health figures, Kris Carr, points out in her books, we’ve got to expand the concept health to include people whose cancers are slow-progressing or indolent. I called myself a healthy, active person before all this tumor nonsense, and yeah, I still do. With this thing in my body, I walked 500 miles across Spain in July heat (“on cheese sandwiches alone!” my incredible pilgrimage buddy observed). I can teach elementary students full time, which is a superpower in and of itself. I still run a few miles each week and even my pace is relatively unchanged.

Unbeknownst to me, my time on the Camino was itself an act of faith and defiance. My drive to work is a declaration that I will not let this diagnosis define me. Each run has become a victory lap: I’m healthy and strong.

2. I am still laughing and making jokes.
Probably more than I should in appointments, but who makes those calls anyway? I made the decision early on that I would not, as much as humanly possible, let this disease steal my laughter. Case in point: I’m a pretty committed natural products user. When my mom asked why I used a non-toxic essential oil concentrate to clean all my surfaces, I deadpanned: “traditional ones can cause cancer.” Dark, yes, but we both laughed.

I want my unicorn squad to be okay. If I use jokes to make it okay, then so it is.

3. I am making plans. 
As Lin-Manuel Miranda wrote in Hamilton, “I’m past patiently waitin’/ I’m passionately smashin’ every expectation/Every action’s an act of creation/I’m laughin’ in the face of casualties and sorrow/For the first time, I’m thinkin’ past tomorrow.”

I bought myself time with chemo, and I’m determined to put it to good use. I love adventures, and by letting go of smaller commitments, I’m dedicated that energy back to things that will make a difference in my mind and health. For now, that means booking a flight to Los Angeles over Spring Break, in addition to the Florida trip I booked in December. Though I usually hate celebrating my birthday, I am planning a party for the first time in ages, as welcoming a new year has taken on a new meaning.

I’m making my tomorrows count. (Hey, that’s got a ring to it. Does someone want to trademark that for me?)

4. I am still happy.
One of my favorite poems is Desiderata by Max Ehrmann. He closes with this:

Therefore be at peace with God, whatever you conceive Him to be. And whatever your labors and aspirations, in the noisy confusion of life, keep peace with your soul. With all its sham, drudgery and broken dreams, it is still a beautiful world. Be cheerful. Strive to be happy.

This past month has included lots of noisy confusion. Despite it all (or is it because?) I’m still happy.