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Legacy.

Last week, the world lost two remarkable women. Both impacted me greatly: one was a colleague and friend, the other, I never met. Grieving is hard. Being as I write to help myself process, I hope you’ll indulge me in reading my processing. I’ll try to honor these women with my words.

Stacy

My friend Stacy was my “room buddy” this past year at school. I needed a spot for my desk, and the first grade classrooms had a corner for me to tuck into. I had admired Stacy since I began working with her. She was effortlessly put together. It was not only her stylish and classic wardrobe (though she certainly had wonderful style), but also the fact that she was the embodiment of grace under pressure. It was a common running joke: when we, her co-workers, weren’t sure what to do in a given situation, we would all look to Stacy. That school year, Stacy and I grew closer, sharing stories over our morning coffee and emails, covering for one another when we needed to duck out of the room, and exchanging silent glances when one of our students said something hilarious.

This winter Stacy distinguished herself as one of those special friends to make a true impact on my life. A breast cancer survivor herself, she walked with me through those scary early days, when I was told to get more scans and tests and when a diagnosis was still on its way. Her text to me the night after my biopsy brought me so much comfort. “Thinking about you Christina and wishing you to have a peaceful sleep tonight. Then some answers soon and moving on the road to recovery!” She sent me another when I announced my diagnosis to my colleagues, telling me how brave I was to tell everyone.

Writing about her in the past tense is hard. It’s unfair.

I once heard someone describe grief as “love with no where to go.” I loved being Stacy’s friend and I loved her for her selflessness in offering support when I needed it most. Now, what am I to do with that love? It makes such little sense to me that my friend is gone. I think about the students she had yet to teach, the husband she loved so dearly, and the son they had only begun to raise. The only logical answer I have in response is to share that love she so freely gave, that love that’s stuck right now as grief.

I hope to someday be someone’s Stacy. I want to be there for all folks that need it, but especially other patients. I will to reach out to that person and remind her how brave she is, even when it’s not yet apparent to her or when she doesn’t feel it. I’m ready to cheer her successes with emojis in text messages and be there for the moments when she feels less than herself. I will pour hope into her when she has nothing left to run on. If I’m lucky, I’ll be half the friend Stacy was to me.

The reading at Stacy’s service included the line, “At night, her lamp is undimmed.” Her light is still shining, bright as ever. It’s just my job now to reflect it.

Shirley

The day Stacy passed, I received an email around lunchtime entitled “A grandma grateful for your gratitude.” It was written by a 95-year-old woman, Shirley, with the assistance of her aid.

Shirley found my old blog, Project Thankful Heart, as well as other gratitude blogs, and wanted to correspond with the writers. She tried to send me an email before, but it bounced back, given that I had de-activated the account a while ago. She was persistent and wanted to make sure the email found me, so her aide suggested various combinations until they found the proper account. Lo and behold, it worked.

Shirley’s shared, “I’m aiming to be more grateful for my life so I’ve been doing my researching for gratitude to feel inspired by others and I came across all of your wonderful ‘blogs’ (as I’m told they’re called). My oh my, what each of you have managed to do as young women astounds me, and how each of have managed to write, oh my heart… Thank you for filling this great grandma’s heart with so much wonder and love.”

And this was just a third of the email.

Naturally, I was in tears by the end and had to respond. I told Shirley how grateful I was for her email and how touched I was by her words. I shared with her the miracle of the email finding me, told her about my new blog, and let her know that I was, in fact, grateful for her.

She responded, “I’m sure your life has changed in a way that you never thought possible- but fear not!  I saw you are a theatre person as well (you can always trust a theatre person from my experiences, you can trust me on that 🙂 ) and if there’s any musical that will get you through this I believe it would be my favorite of all time- “The Sound of Music”.  I see a lot of Maria von Trapp in you and as she herself’d say, “I have confidence”.  I have all the confidence in the world in you, dearest Christina. The deepest of blessings and prayers, Shirley”.

I meant to reply to her and let her know how I played Maria once, that it was my first leading role and how I imagine that, were we the same age in the same class at school, we’d get in trouble with the teacher for talking too much. But the week, with its sadness and its events, got away from me until three days later, when I received an email from her aide letting me know Shirley had passed. The aide signed off, “I don’t know much but if Shirley taught me anything its to not let another moment go by without telling someone how I think and feel. Thank you and her for giving Shirley a great last few days- I know she was so grateful.”

Last week was filled with tears. Reading this email was no exception.

Shirley asked that donations to a local theatre company be made in lieu of flowers. I made sure to follow her careful instructions. I’ve been reminding people that I love them more frequently.

And I think she’d be tickled to see her own words on a real-life blog.

Legacy

We are not guaranteed an amount of time on Earth – but we are challenged to do great things with the time we are given.

Shirley had nearly a century with which to make an impact, and make an impact she did, even up until her final days when she was writing emails to the bloggers she admired. Stacy was here for too short a time, but built a legacy of joy, of gentleness, of compassion, and love.

A colleague at Stacy’s memorial shared many beautiful words. I don’t remember them verbatim, but the sentiment is this: That feeling that we all felt, there in the room together, was love. She challenged us to allow it to transform us.

This past year has shown me how challenges can shape a person’s life in the blink of an eye. Last week was one of the hardest I’ve had in a long, long time. If you’re feeling a bit battered, you’re in good company, friend.

Join me.

Let’s sit with our grief, our challenges, our fear. Let’s make space for one another to cry until it feels ok to laugh again.

You don’t need to have cancer or to know someone who does to be in a hard place. As Anne Frank put it, “How wonderful it is that nobody need wait a single moment before starting to improve the world.”

Let’s keep telling the people around us how we feel about them. Let’s be there for one another when it’s most needed. Let’s see how this love transforms us.

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Quiet is Underrated

Hi, there – long time, no see!

Things have been quiet on the blog for the sheer fact that with life itself has been relatively quiet, for which I’m grateful. You truly learn to love quiet when you’ve been on a roller coaster for almost a year. The past month and change was a mix of good days and bad days, with the good far outnumbering the bad. Here are some updates on the important stuff – with other updates to come.

Fundraising

Back before my birthday, I asked for donations to the Desmoid Tumor Research Foundation. The DTRF is the only organization in the world dedicated to the research and treatment of desmoid tumors, and it’s been a critical resource since I was diagnosed in February. I set a team donation goal of $500 and shared the link here on the blog and on my personal facebook page.

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In a matter of days, I adjusted that goal to $1,000, then raised it again to $2,500. Here we are, three months later, and you have generously donated over $9,300. Never in a million years did I think I’d be fortunate enough to receive that kind of generosity and financial support.

I do not believe that money solves problems, but it certainly makes some issues more manageable. In this instance, your donations are primarily funding grants for research – some of which I’ll be able to hear about in September at the annual Patient Meeting. I mean it when I say that each dollar is one step closer to figuring out how we can treat this and be tumor-free once and for all. I can’t thank you enough.

Running for Answers 5k

The Running for Answers 5k in Fairmount Park is the day following the annual patient meeting in Philadelphia. I’ve seen photos of this event, and if I could design a 5k, this would be it. There is a “crazy socks” contest and post-run yoga. And to sweeten the deal a bit more, there’s free cheesesteaks and ice cream as well. If there is a more Philly way to do a 5k, I haven’t yet heard of it.

What I’m really excited to share is that I have been asked to be the Featured Speaker before the 5k this year (!!) I’ll be sharing a bit about my story, kicking off the race, and doing my best to put all those articulation exercises from years of rehearsal to good use.

I guess this opportunity officially makes me a motivational speaker! I will be drawing inspiration from one of my favorites, Matt Foley.

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Candid photo of me preparing for my 5k speech.

Our team, the Unicorn Squad, met the 15 x 15 challenge, which means that since we had 15 team members by June 15, all the team members will be getting a custom designed Unicorn Squad tshirt. I’ve picked out the color myself and am working with our graphic designer to come up with something fun and memorable!

Heads up: If you want to register for the 5k AND get the Unicorn Squad tshirt, you have to register by August 1. (That’s this Wednesday, in case you don’t have a calendar close.) You can sign up here by clicking “Join Team.” You’re of course welcome to register after August 1, but you won’t be able to receive the tshirt.

*Please note that when you register, a fundraising page will be automatically created for you. Please feel no obligation to raise additional funds. Just having you join us is gift enough!

Physical Therapy

With my treatment now stabilized, I asked my doctor for a script for physical therapy. My amazing PT, Alexandra, certainly had her work cut out for her. It’s hard to pinpoint what is realistic, since I’m not recovering from a specific injury. Since September, I’ve had a loss in my range of motion as well as little remaining strength in my rotator cuff muscles and arm. I felt like I was “picking up” my shoulder and putting it into its socket all day, which quickly tired out and aggravated the muscles around it. In addition to shoulder pain, I had a lot of tumor pain and neck pain as well.

Let’s talk anatomy for a second. You have a group of muscles that contribute to shoulder movement. My tumor is in my pectoralis major and has pushed my pectoralis minor out, towards my armpit. It measured on my last scan 2.2 in by 4.1 in by 2.8 inches. (As a point of comparison, that’s the size of the screen on an iPhone 7 – but 11 times thicker.) So my pectoralis major and minor can’t pull their weight – literally – when doing the work to help my muscles move properly.

What is it like when two muscles have been hijacked and can’t function normally? Imagine you hire a bunch of people to move a piano. They’re all pros, they’ve been in the business for nearly 30 years. They come highly recommended – “the only ones to do the job right!” – and move that baby grand expertly every time. But when they show up to your house, two of the movers have anvils strapped to their backs. The other movers have to try and compensate, get tired out more quickly, and can’t move that piano as well as they did before. Lots of pinched fingers and toes, and maybe a couple of drops. Ouch.

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Let’s just say there were some definite moments I felt like Wile E Coyote.

Yet in a little over a month, the gains I’ve made have been extraordinary. I’m now able to reach my right arm up over my head almost as fully as I normally do on my left. It’s my latest party trick! (This may seem small, but getting dressed just got a heck of a lot easier! I can lift my arm out to my side with less pain and just more of a “click” in the joint. My neck pain is virtually gone. My need for painkillers has decreased immensely, with the stretches and strengthening exercises now helping with feelings of soreness and pain. I’m now able to manage the pain effectively with ibuprofen and the heavy duty meds around once a week, at most.

These small gains make the ordinary seem extraordinary. Before I got out of bed earlier last week, I did one of those big stretches where I stretched from my toes to the tips of my fingers. And it actually felt satisfying. Not like I was holding back or tiptoeing around, hoping not to be in pain. It was the stretch my body had been needing since September.

I think I actually laughed out loud before promptly bursting into tears.

Perspective

After 28 years of normalcy, my life has been thrust in a different direction. It’s easy for me to look around and see the missing pieces. There’s the empty space on my calendar which used to be filled with rehearsals and plans crossed out on days I wasn’t feeling well. I’ve got a pile of wrappers in the trash from ginger candy, which I rely on to get me through days full of nausea. As I cheered my friends who were nominated for Perry Awards this year, I couldn’t help but feel a twinge of sadness that I wasn’t able to perform this past season.

But what’s left is important. It’s not the kind of triumph I’ve celebrated before, but the stakes have changed.

Lately, I’ve been reading a lot of Mary Oliver – she’s one of my favorites.  This poem, in particular, spoke to me on a recent morning:

The Gift

Be still, my soul, and steadfast.
Earth and heaven both are still watching
though time is draining from the clock
and your walk, that was confident and quick,
has become slow.

So, be slow if you must, but let
the heart still play its true part.
Love still as once you loved, deeply
and without patience. Let God and the world
know you are grateful. That the gift has been given.

I lose my way and I keep my head turned to the past. We all do, sometimes. I will stare at my empty plate and ignore the bountiful table set before me. I need to walk slowly when I used to run, and I fill with sadness knowing there might not be a day when I can run again.

But then I catch sight of fireflies in a field, or a sunset in its full glory, or someone will say something so funny I will laugh until my stomach hurts.

I have slowed down. But I am grateful.

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#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.)

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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