March 2018 – Girl Meets Cancer

Let’s Play Taboo!

March 31, 2018 ckosyla

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!

41tmbdix-ll-_sl500_ac_ss350_ — 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.”)

source — 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.

patience2biago — 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, 2018March 15, 2018 ckosyla

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.

wooden-clothespins — 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.

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.

linda-richman-mike-myers-coffee-talk — 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.

guidance

The Binder

March 8, 2018 ckosyla

If there’s one thing I’ve lived by in my 28 years, it’s this: When the going gets tough, the tough get organized.

I often joke that I am type A down to my blood. (I’m type A positive.) My innate control freak nature has been softened over the years through meditation, mantras, and lots of life lessons. What’s left is essentially an elementary school teacher motto (“Do your best, forget the rest!”) and a solid appreciation for office supplies and organization.

It should come as no surprise, then, that when my life was sent into a dramatic upheaval at the end of January, I reached for my best coping strategy: organize it… and for Pete’s sake, make it look pretty.

Why? Well, the two-pocket folder containing documents from my surgery in September was bursting at the seams. When I needed a place to keep all of my documents back in the fall, I naively thought the situation was temporary, so why spend time on a fancy binder? But after my diagnosis, just looking at the thing made me my blood run cold. There was nothing colorful or hopeful about it. While there were so few things in my control, my binder was one of the few I could manage.

One of my rockstar cancer survivor friends sent me in the direction of Michaels, hinting that the DIY method might be right up my alley. (She knows me well.) Here’s the thing: if you’re a three-hole punch, black “High School Chorale” style binder person, more power to you. I wanted something that was less reflective a diagnosis and more representative who I was as a person. My mom and I spent an arguably absurd amount of time in front of the binder display, debating the merits of a rose gold vs. a teal cover and discussing the kind of dividers we might need in the future.

I’m too ashamed to tell you the total I spent on binder supplies, but I promise that it was done with coupons and teaching discount in hand. I left the store feeling lightyears better about the pile of paperwork, business cards, and medical imaging that would fill the pages. It had nothing to do with the content itself: the reason I felt great was that this binder was suddenly more me.

Maybe she’s born with it, maybe she spent a few hours watching Netflix, obsessively hole punching medical records and thoughtfully arranging pre-punched pocket folders.

In an effort to make this blog a resource for patients who have been recently diagnosed, or if you’re just curious, here are things I added to the binder:

A section on critical contact information for me. It’s easier to copy my Primary Care Physician’s address than to look it up on my iPhone, and I can be sure I’m not giving the wrong zip code for one of the many NJ towns in which I’ve resided. (08043? 08648? 07940? The list is too long to count.)
Copies of my insurance and prescription cards. Especially handy if I someday forget to bring the originals.
A list of current medications I’m taking... plus their frequency, dose, and reason for taking them. I also include the vitamins and supplements I take.
A 2017-2018 calendar with significant dates. I prefer a monthly view: that way I can reference my immediate medical history, doctor’s visits, procedures, and testing with more specificity during appointments.
A section on contact information for my UPenn doctors. I’ve already met with five doctors. Each had at least one Physician’s Assistant or Administrative Assistant. There’s also the file room at the hospital and several pharmacies which I use. When you take into account all my current doctors, plus my previous medical care, that’s a lot of info. I have their numbers in my phone, with UPenn as the last name for reference, but it makes it easier to have it all in one place.
Looseleaf paper. It’s a space for doctors to draw pictures, my own quick doodling in the waiting room, and the jotting down of questions ahead of appointments…. not to mention the concept of leaving space for possibility.
A unicorn sticker. Totally optional. (For me, a non-negotiable.)

And there you have it, my grown-up Lisa Frank creation. I wouldn’t go so far as to say I never leave home without it, but I’m certainly looking to debuting my masterpiece next week at the two-week follow up with my oncologist.

Thank you again, as always, for your countless kindnesses. They have carried me on my way so far and will continue to keep me going in the times ahead.