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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.

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Hello & Welcome!

Hi folks!

My name is Christina, and I have desmoid-type fibromatosis.

Don’t know what that is? Most people don’t! Let me break it down for you. DTF is a rare condition that impacts 2-4 people in 1 million each year. As one of my doctors put it, I’m “the rarest of the rare.” So rare in fact that I like to call myself the unicorn of cancer patients! Some people consider it cancer, some don’t. (In fact, even my team of doctors disagrees on that point.) The bottom line is that it’s really important that DTF is treated just like cancer – specifically, sarcoma. My desmoid is located within my chest wall, behind my right clavicle.

Bottom line, I’m 28 and my life is not going to look typical anymore. (Let’s be real, I’ve been typical before, so why start now?)

You may have stumbled on this page because you know me or my family, heard about my story, or perhaps you yourself are a Desmoid Tumor patient.  This blog will document my recent diagnosis, updates on my treatment, and my continued adventures. Please keep in mind that Desmoid Tumors are rare and much about them is still a mystery. My experience is going to be different from the next patient’s.

Regardless of how you landed on this page, I invite you to reach out and say hello! If you’re a Desmoid patient, I want you to know you’re not alone. I’ve found comfort and advice in Facebook groups and want to offer my own resource. You’re welcome to contact me at any time by using the “Contact Me” link above.

Thanks again for visiting, and I’ll be updating soon!

Christina