reflection – Girl Meets Cancer

A Word – Or, Many – On Roe and Cancer.

June 27, 2022 ckosyla

Hi Squad.

It’s been a while since I’ve posted here, mostly since my treatment has been stable (thank goodness) and I’ve been doing what chronic cancer patients dream of doing: living. However, I’m not speaking about just myself today. This is far more important.

The impact of the overturn of Roe vs. Wade on the cancer community cannot be overstated. While there are many lenses through which one can examine this issue, I am choosing to share it through my own cancer experience and those of my community.

To quote Dr. Elonora Teplinsky, a medical oncologist at Valley Hospital in New Jersey, “cancer during pregnancy occurs approximately once per 1,000 pregnancies annually… While many cancer treatments can be safely done during pregnancy, many cannot be such as chemotherapy during the first trimester (and certain chemo agents during the whole pregnancy), radiation, endocrine therapy, and some targeted therapies. The SCOTUS decision will affect our ability to give necessary treatments for the health and life of the mother.” (Source).

In short, the upending of Roe means that women facing cancer who become pregnant will die. Not all of them. But many. The law is so unclear that most medical providers not making abortion accommodations for cancer care. As a recent NPR interview summarized, “Dr. Lisa Harris is an OB-GYN at the University of Michigan who’s been working on a task force to prepare for the possibility that the state’s 1931 abortion ban takes effect. That law would make abortion a felony except, quote, ‘to preserve the life of the pregnant woman.’ She says that language is incredibly unclear… Sometimes pregnancy hormones make cancer spread faster, or treatment isn’t safe to start during pregnancy. If abortion is not an option for patients in this situation, they may have to carry their pregnancy to term and delay crucial treatment… That might mean their cancer is more serious and more widespread than early in the pregnancy, and so they may indeed have a higher risk of dying, but it’s not a risk that’s going to happen immediately and might be a recurrence in months or years.” (Source: NPR). In an article in the Houston Chronicle, one woman named Sarah Morris shared her story which falls in this situation. She was diagnosed with cervical cancer at 10 weeks pregnant, and while she wants the baby, she is in fear of her life. “Though the law makes an exception for medical emergencies, Morris said her doctor told her its definition leaves a lot up to interpretation, so she would perform abortions only on patients who were bleeding out or in other obvious life-or-death situations.” You can read that full article here.

In addition to the loss of bodily autonomy and a constitutional right, it puts so much else up next: including fertility treatments. There are already states with “trigger laws” in place, where the law defines that life begins at conception. This grants seemingly full personhood to a frozen embryo created through a process like IVF. As I write, fertility doctors across the country are working to move embryos created through science to states where personhood laws are not in place. It’s important to note that this act alone can cause damage to the created embryos that patients have likely spent thousands of dollars, and so much personal heartache, to create. (source: WSJ).

In 2019, I made the choice to freeze my eggs before beginning Doxil infusions for my desmoid tumor. Insurance covered nothing of this process, and it cost several thousand dollars, even with assistance from the Livestrong Foundation, which covered most of my pre-retrieval medications. (You can read my posts here). If I had a partner at that time, I would have chosen to freeze embryos. Because cancer should not dictate a reproductive path for individuals or families.

But here we are.

You may not consider yourself a political person. But like it or not: the personal IS political. And as a woman with cancer, this ruling is undeniably personal.

If you feel that this ruling is not personal to you: I urge you to look at the life circumstances that prevent you from feeling that impact at this time. But remember: regardless of what you consider, cancer does not play fair. It strikes down people across party lines. It is no more a moral failing than any other personal tragedy.

Whether an egg is fertilized in a laboratory or through sexual intercourse: the decision on how to proceed should rest with the person carrying it alone.

My heart is with all who lost a constitutional right last week and those who love them: especially my beloved cancer community, who has already endured the loss of control over their body through their diagnosis.

Please take care of yourself, as best you can, however you are able.

— Christina

experience, reflection, treatment

Pinch, Pinch, Hooray: I’m Vaccinated!

April 15, 2021 ckosyla

I have been long neglecting this blog and wanted to share with you the most exciting recent development: I’m vaccinated!

To share the good news with you, I’d like to share a piece I wrote that was published today on Love What Matters.

In March 2020, I was ready and excited to re-enter the real world. Just a few weeks prior, I had my last chemo infusion for my rare soft-tissue sarcoma and would be shifting to an oral chemotherapy with more manageable side effects. After a year of nausea, couch time, and loneliness, I was ready to return to my job as an elementary school teacher, and in many ways, pick up where I left off.

I don’t recall where I was when I first heard of COVID-19. There had been reports from China since before Christmas, but I had naively thought of it as a virus that may not reach here. Just in case, I got in touch with my boss at work. “This sounds like it could be really bad, and if it does arrive in the US, it won’t be safe for me to return to the classroom.” This was in January, so that possibility still felt so far off, so remote. I prepared to return to the classroom on March 30, 2020, the day my school returned from Spring Break. Little did I know that I would never again step foot into that school to teach.

It was March 11, 2020. Though I did not know it, it was the last normal day. I made the decision not to go into New York City to see a Broadway show the day following, because rumors were starting to swirl that things were a lot worse than anyone knew. I’m a bit embarrassed to admit that I cried. I wanted so badly to return to normalcy, to the things I loved, and professional theatre was one of those big things. To comfort myself after declining my ticket, I made a pie for my Aunt’s birthday and drove to have dinner with her and my Uncle. We shared appetizers at the kitchen island and enjoyed our dinner at the table before slicing up the pie. I don’t remember our conversations, which mostly indicates that they were normal, easy, oblivious of what was to come. Before I walked out the door, I got a hug from each of them. It would be my last hug for 366 days.

By 1 PM the next day, we were living in a completely different world. The news of the Broadway shut down made my blood run ice cold. An usher at the show I was supposed to see had tested positive for COVID, and all the productions were going dark to preserve public health. I’ve been a drama teacher and a theatre goer for a long time, and I knew that if New York was willing to sacrifice one of its biggest sources of income, it had to be really bad. It took another week for the rest of my signs of normalcy to disappear, but this will forever be my first indication that things were changing.

The next few days were a blur. My false sense of security had completely vanished, and suddenly I was terrified of everything. As someone who was immunosuppressed from 12 previous rounds of chemo, I was accustomed to obsessively tracking my white blood cell count, an indication of how my body would be able to fight off an infection. Even on the best day, I was prone to immune struggles and was a frequent flyer at urgent care for my own body’s inability to keep itself healthy. I knew that my body would be defenseless against this terrifying virus, one which even the experts couldn’t even comprehend. Other healthy people in my life seemed to be hopeful that it would all blow over in a few weeks, and meanwhile, I waited on pins and needles. I stayed in my apartment, stepping outside only to let my dog out for short bursts. I’m so grateful that I had support in those early days. Two of my friends came to pick up my laundry, since I was terrified to go to the laundromat. They took every precaution, wearing masks and sanitizing the doorknob after opening the door. I ordered my first ever grocery delivery, and shortly after my parents asked for me to make a list of what I needed. At the time, there were even rumors that food would be hard to get, so I was encouraged to get canned goods and enough food for at least two weeks. Looking out my window, I felt nowhere was safe: not even the quiet suburban street where I lived.

And soon, the rest of the world did hear. Schools shut down. Stay at home orders were issued. We listened to public health figures, clamoring for hope. As the conversation about bubbles and social distancing began, I realized that I was a bubble of one. It was me and my dog, weathering this out together, just as we had my past year of chemo. This time, I couldn’t include anyone else: I was alone. With that realization came the understanding that if I were sick, I’d be doing that alone, too.

What I had not anticipated about the pandemic would be how well my cancer experience prepared me. I was ready to practice every given precaution, many of which were the same ones I kept to when in treatment: fastidiously washing my hands, taking my temperature, watching for signs and symptoms. Mentally, I had an advantage too. Since my diagnosis, I was used to not getting my way, needing to cancel plans I had been greatly looking forward to, or to live in a bleak space of uncertainty. At times I would get frustrated as my peers caught up, saying many of the same things I had for the past year. I listened as they wondered who was sick, or they considered their own mortality, and I swallowed the words “this is what I’ve been saying!” or, “I know, I’ve been doing this for a year already.”

As COVID continued its tight grip on the country, my cancer experience continued as well. My new medication turned my hair completely white. Since it had no pigment, it didn’t respond to any dye or color. Having not previously lost my hair or had any significant changes due to chemo, I spent nights agonizing over what to do. I made the difficult decision to cut off all my “old” hair and just leave my new color. This meant shaving my shoulder length hair, alone, in my bathroom. I understood that my hair was out of my control – but I wished, so hard, for someone to hold my hand, or for someone to even out the back after I finished my work, just to make it a touch easier. A few weeks later, I faced a huge medical scare when my new treatment threw off my liver counts and for a bit they feared I might have new tumors. Driving into Center City Philadelphia alone and with the possibility that my health could be radically declining was terrifying. Fortunately, that was ruled out, though I needed to come off of my treatment and have bloodwork done each week. This became my only regular excursion out of the house. Even though my medical center is wonderful and took top-notch care, I still felt my body tense as I walked into a building that was not only filled with people, but where COVID testing was conducted.

My own personal medical scares were unfolding, all the while the country faced shocking loss after loss. I began to hear whispers and confirmations: this family member tested positive, this friend of a friend lost a parent. I felt helpless as the death toll climbed and I knew each one of those was a friend, a family member, a neighbor. In order to manage my anxiety, I started to ignore the news as much as I could. Every time I saw someone who refused to wear a mask, I was infuriated. I was the very person that people needed to mask for. Their refusal to take proper safety measures was putting my life in danger. I felt insignificant and expendable.

Time passed, in a strange way where it felt like March was just moments and decades ago all at once. My friends started calling it “the before times.” As I was too immunosuppressed to work in-person, I lost my job. Just after that, I celebrated Thanksgiving and Christmas alone. I tried to stay upbeat and surround myself with my favorite traditions, but it wasn’t the same. I ordered dinner for one from a local restaurant. Days melted into nights and weeks. I was still waiting for a new cancer treatment approval from my doctor, and also waiting for a sign of hope from public health experts. I had nothing to look forward to, no dates on the calendar or promises of improvement. I was doing everything I could to stay afloat, but I was exhausted – not to mention terrified of how much longer I’d have to wait this out.

Around Christmas there were rumors about a successful vaccine. I eagerly waited for my oncologist to give me the all-clear, not knowing if with my medical history, it would be safe. He enthusiastically endorsed it, adamantly reminding me that my body needed the protection. One of my best friends, DJ, is doctor who had seen first hand the devastation COVID had caused and had survived COVID himself. As a front line worker, he was the first person I knew to get the vaccine. I not so patiently waited for my state to determine when I could get my shot. I got a phone call from a friend who was able to make an appointment for her parents, and she was willing to try getting me in as well. Filling in my birthday and information from memory, she exclaimed “Ah! It went through! You got it!” Tears of joy filled my eyes. I finally had a date on the calendar, and this time, it would be the one that would deliver me out of the darkness.

My first round of the vaccine was marked with excitement, enthusiasm, and joy. I had expected to cry, but when the moment came, I was all smiles. My aunt and uncle, the same ones I had dinner with before the world shut down, were also there with me. We took photos and excitedly talked about the many hugs to come. The second shot was much more difficult. I was prepared for the side effects which would show that my body was mounting an immune response, but what I was not prepared for was the feeling that it was chemo all over again. I was nauseous, feverish, and my body ached from head to toe. I tried desperately to remind myself that my infusions were behind me, that this would bring me closer to seeing family and friends safely again. I marked two weeks on my calendar for the moment when I would have full antibodies and sent a text to DJ, the doctor I mentioned earlier. “Want a hug on March 13?” I asked. He responded with an enthusiastic “YES!”

When March 13 arrived, I couldn’t sit down. I watched out the window, excitedly awaiting the moment he’d drive up. Yet as odd as it sounds, I had no idea how I would react once he actually arrived. For months, I’d had nightmares in which I’d have a friend over and then realized we were both unmasked. As DJ’s car pulled up, it was still anyone’s guess. But as we walked toward each other, with smiles from ear to ear and tears in my eyes, all my worries slipped away. As we wrapped our arms around each other, I couldn’t help but feel grateful, not only for this moment, but for the fact I had survived all the moments before. I was still living through two simultaneous nightmares, cancer and a global pandemic, but in this moment, I was held, and that was enough.

reflection

Empty Hands

November 15, 2020November 15, 2020 ckosyla

Hello: it’s been a while.

In truth, I thought I’d have good news to share by now. A few things have been in the works for months. And so I have waited, like a child peeking around the corner, hoping to bring you something thoughtful and handmade to show off my craftiness, my perseverance, how hard I’ve worked.

Instead, I’m coming to you now with empty hands. Hands that are a bit unsteady, nails certainly unpolished, perhaps a bit embarrassed with nothing to show for myself.

Even without news, a lot has changed.

While I won’t get into the details, I will share that I’ve lost something that was a huge part of my life and was even before cancer. This seismic shift went unacknowledged by most others involved, leaving me to wonder if it really unraveled the way I experienced it. It reminds me of the TS Eliot poem: not with a bang, but with a whimper. But I was there. Others may have been left unscathed, but I am not.

What should have been a relatively insignificant event also became really impactful this week: I had a haircut. What I failed to realize is how oddly my hair had grown in after going white from Votrient. Different spots on my head grew in at different rates. Before I knew it, the inches of growth I fought so hard for were falling around me in piles. What remained was a buzzcut to make it all even.

Hair is so critical to our identities, and what hurt most is that I wasn’t expecting it. My natural color is back in full force for the first time since I was 17, a time when I was painfully awkward and unsure of myself, desperately waiting for my life to start. It felt full circle: here I am, over a decade later, feeling the same uncomfortable things all over again. So I did what I do best: I cried for two days. I let myself feel sad and awkward and seventeen and angsty. Then I ordered a wig and had a dear friend help me style it until I felt comfortable. The wig has been a huge blessing. It’s helped me regain my confidence, feel relatively normal, and stopped people from staring at me as I walked my dog. (I’ll try to give them the benefit of the doubt: maybe they didn’t recognize me. But the heat of a stare in a small town will make the hair on your neck stand up, I’ll tell you that.)

Why type away while I have seemingly nothing to really report? Well, one, to tell you I’m still here. (Which, I suppose, is always worth mentioning when the majority of your writing is about your health.) Two, to share that sometimes cancer is about waiting and patience. It’s neither the incredible celebration or the devastating scan result: it just is. More than anything, I write because of a sentiment Elizabeth Gilbert shared in an interview with the Good Life Project podcast:

“I like learning in public and growing in public, because I think that it’s a service. Because the people who are kind enough to learn in public in front of me have helped me enormously to change my own life. The turn around time for how long is between when I have a revelation or an epiphany and I want to share it can be anywhere from a few minutes to a few days, but it’s there and if I don’t share it, it feels burdensome on me. I think in the same way in the same way any talent you have that you don’t use becomes a burden, any information that you have about how you survive this journey on Earth that you don’t share is a burden. It’s a burden on you, because it’s meant to be out there.”

I won’t fool myself into believing I’m sharing things worthy of the words revelation or epiphany. But I am, truly, hoping that these words can be a field guild for someone else. At the very least, maybe I can or validate someone else’s grief at their loss of identity, or crying over their hair, or agonizing over the need to wait.

And in the meantime, I’ll be waiting here with my empty hands, hoping and trusting beyond reason that someday soon, they’ll be filled.

experience, reflection

You Don’t Look Sick: Illness, Pain, and Being Believed

March 4, 2020March 4, 2020 ckosyla

I used to think that the weather-induced aches and pains claimed by older family members were no more than old wives’ tales or fodder for small talk after dinner. I didn’t expect to know at 30 just how right they were.

I have a tumor, a rare, soft tissue sarcoma, attached to my clavicle. It’s the size of a grapefruit and has taken over my pectoralis major, pushed my pectoralis minor into my armpit, and grown into my top few ribs. Two years of chemo and counting has kept it from growing into my brachial plexus, though it still seems to taunt me by playing with the nerves that reside there. As a result, my pain can change from day to day, sometimes dependant on the season. In spring and summer, passing showers can be felt. In the winter, as I draw my arms closer to my body to instinctively shield myself from the cold, the three other muscles of my shoulder work overtime for the two compromised by the tumor and tire and tighten easily. A mild winter, like the one New Jersey experienced this year, is a recipe for disaster. When there’s several days of passing rain and cold fronts chasing a few days of warmer temperatures, my pain leaps all over the place.

Pain aside, my appearance is relatively normal. I do not fit the cultural touchstone of a chemo patient. I have not lost my hair from any of my various treatments. I haven’t lost a ton of weight. (The fatigue from my latest treatment has made my lifestyle more sedentary, so I’ve actually gained a bit.) Oftentimes, this “not looking sick” is a blessing. I can enter into a new space, not disclose my diagnosis, and pretend to be someone else for a while. Other times, I desperately wish my appearance would match the war my body was waging on the inside, so others would know the pain I felt.

On a warm late morning in January, a video I made for a cancer organization I support popped up on my feed again. It was several weeks old at this point, but I saw that there were some comments I never read. Out of sheer curiosity, I clicked on them. The top comment read: “you don’t look sick.”

I’d heard it several times before, though never in this form: online, from a stranger. When it is said person, I can typically sense its onset. It usually comes from well-meaning family members or coworkers, usually in an attempt to diffuse the conversation after I describe my litany of side effects from treatment. Most of the time, the person’s intentions are really well-meaning. They want desperately to brighten a disappointment or make me feel good. I appreciate the compliment, most of the time, but there are bad days when I just want to tell the truth: that appearances can be very, very deceiving.

A friend of mine with another illness, cystic fibrosis, shared a tweet about her own experience. Turns out that even though she’s been battling CF her entire life, she got a flood of sympathy when she shared about having a cold. “I’ve been getting sympathy for it all day long. I never get this with my stupid invisible disease! It’s so satisfying to *sound* sick! I’m eating it UP. I will be sad to see this cold go.” When I told her how deeply I related to this, she shared a perfect insight: “[Others] need to see/ feel/ hear it to understand it.”

That stranger who commented on the video of me couldn’t see or feel my pain – and was clearly unwilling to hear my words and believe my experiences.

A wave of emotions crashed over me. Possible responses rushed to mind:

Don’t look sick? I already know: the fact that I do not look sick is likely part of why doctors didn’t take me seriously and my diagnosis took so long.

Don’t look sick? I am more than the pain and treatment side effects that impact me on a daily basis: so they are not all I talk about.

Don’t look sick? Interesting: I wasn’t aware that losing my hair, or looking pale, or looking like *anything at all* was a prerequisite to credibility.

Ultimately, I decided not to respond – because the problem is not this one commenter. The problem is the deeply engrained cultural notion that “sick” looks and presents a certain way.

When we assume that people need to look sick in order to be sick, we invalidate their experiences. Suddenly, their pain becomes imaginary, and in turn, their problems feel unimportant. Many patients are already accustomed to not being believed by their own doctors, especially women. According to a 2017 blog post by Harvard Medical School, “women in pain are much more likely than men to receive prescriptions for sedatives, rather than pain medication, for their ailments. One study even showed women who received coronary bypass surgery were only half as likely to be prescribed painkillers, as compared to men who had undergone the same procedure.” Researchers from the University of Virginia published a study in 2016 revealing the even greater disparities for people of color, concluding that “black Americans are systematically undertreated for pain relative to white Americans.”

When we tell people, “but you look great!” it sends a message that putting on a face for the rest of the world is the most important task at hand. The comfort of those around you takes priority over the truth of the patient’s experience.

When we rush to conclusions about someone else’s health based on how they act, we completely discount the importance of mental health, and that those struggles and demons are just as valid as more apparent illnesses. I can’t help but think about those we’ve lost to suicide: some who worked so hard to present as happy for everyone else, or to “fake it til they make it,” but who were fighting their own minds on a constant basis.

We can take better care of each other by getting vulnerable, by stripping away the layers of pretense that we’ve been conditioned to wear as an armor to get through our daily lives. We need to check in on our friends who seem to have it all together. Instead of just “you look great!” consider following it up with, “I know that can be misleading. How are you feeling?” Be willing to get uncomfortable. If my experience has shown me anything, that’s the place where the growth is. That’s where true connection lies.

Continue reading “You Don’t Look Sick: Illness, Pain, and Being Believed” →

experience, reflection

Two Years Post-Diagnosis: A Reflection

February 15, 2020February 14, 2020 ckosyla

Two years ago today, I heard the words desmoid tumor for the first time.

It was a Thursday. It was late, I think – at least later than I expected a phone call from a doctor’s office – maybe 7 PM? The call was from the nurse practitioner in thoracic surgery. She said it “fibromatosis, desmoid type,” and that it was cancer.

I googled everything I could in the next several hours, voracious. Everything I found said a desmoid tumor was benign, not cancer.*

*My tumor will likely not metastasize, so google called it benign on February 15, 2018, and still does today. Its official classification is an intermediate grade soft tissue sarcoma, and it requires chemotherapy to be managed. I decided to go with my thoracic surgeon’s assessment and call it cancer on February 15, 2018, and I still do today.

Honestly, it’s remained that confusing as that ever since.

It’s strange to occupy this middle ground, this place where I am never fighting for my life but never permitted to live that life normally again, either. If I’m being honest, it’s a hell of a lot harder than I anticipated.

I went through this manic, almost giddy phase when I was first diagnosed. My thoughts, internal or spoken, were along the lines of, “okay, life, BRING IT ON! Let me show you what I’m made of! Maybe I’ll be one of those people who RUNS MARATHONS when they get cancer. I’m already a vegetarian, so my body is going to do better with this than most people. I am going to BEAT THIS.” I wrote somewhere in an early blog post that I was protesting the word sick. I didn’t want to think of myself as a cancer patient. I met this like every other challenge I’d been presented with: with the fierce determination only an Irish Taurus could posses.

But I’ve come to find that this would be unlike any other challenge I’d come up against before. It still is. I know now that I will likely have this tumor for the rest of my life. My goal now is a bit more realistic: to make it smaller so I get my range of motion back and my pain is reduced.

image1 (19).jpeg — Hanging out at my most recent infusion, #11.

As two years have passed, my diagnosis has changed me. I remember saying at a CancerCon breakout session last year that I was finding it impossible to go back to yoga and meditation, things that used to bring me peace. I closely associated them with my pre-diagnosis life. It was painful to sit on my mat, unable to enjoy the body I once had, and my quiet mind became a playground for anxious thoughts to take control. A woman in the discussion shared her thoughts, “well, your practice may look totally different now, and that’s okay. Your life is totally different now.” I’m working to accept that I can never go back. It sounds naive, or perhaps just obvious, but when put in practice, the two years of living with this are hard to stack against the 28 years of life “before.” I’m growing to accept that something life-changing does not leave you the same after occupying such a large space in your life.

Here’s how I’ve seen myself change over the past two years.

I have accepted chaos as truth.

I used to buy the “sugar feeds cancer cells” myth. I built up this ivory tower of vegetarian cookbooks and essential oils, each ounce of them surely saving me the pounds of cure standard to the traps of American healthcare. Whelp, I’m sorry to tell you: a plant-based diet will not keep you safe. Making your own cleaning products will not save you. And boy, does that suck! It’s easier to feel safe, to feel that our actions are securing health for the future. A handful of people have said to me, “at least you know you did everything you could,” to which I respond, “I wish that were enough.” It just doesn’t work that way, at least not for me. There’s a certain humble reckoning to be had knowing that death, and its henchman, cancer, do not care where you live. They find you anyway.
I pick my battles.

I still make my own cleaning products, because I’ve got enough chemicals floating around in my bloodstream thanks to chemo, and I’d prefer to cut down where I can. I still love using my essential oils to help me sleep or address a minor ailment. But the illusion that I am in control is no longer at play. I don’t worry as much if my produce is organic. I take more prescriptions because holistic remedies don’t always cut it, they bring me relief, and my body needs them to feel better. The battle picking applies to household tasks as well. I choose more often to conserve my energy for the things that matter to me. I go to Wawa for dinner when I’m straight up too tired to make it. I leave the dishes unwashed in the sink in favor of snuggling up with my dog and watching Netflix.
I make decisions from a place of seeking happiness.

I made that! Strawberry pie, which I served with basil whipped cream. Delicious.

I eat more pie, because I really enjoy the challenge of baking them, and they’re delicious. I stopped watching Handmaid’s Tale on Hulu, because real life was throwing enough downers my way. I spend my money on the things that bring me joy, like travel and holiday decorations that I see every day.
I am more comfortable with being uncomfortable.

Grief and I know each other better. In the past two years, I’ve lost two dear friends to other forms of cancer. I have also mourned the life I thought I would have for 730 days. While it has been agonizing, I like to think that I am better at speaking with others going through unimaginable moments. Stephen Colbert put it best in an interview with Anderson Cooper. “You get the awareness of other people’s loss, which allows you to connect with that other person, which allows you to love more deeply and to understand what it’s like to be a human being if it’s true that all humans suffer . . . . At a young age, I suffered something so that by the time I was in serious relationships in my life, with friends, or with my wife, or with my children, I’m understanding that everyone is suffering.”
I know that I am more than my career.

It’s the all-time most common Hallmark Christmas movie trope, doesn’t it? Young, single professional who needs to learn that work isn’t everything? It’s a stereotype for a reason, I think. When you’re driven, have passion, and are given opportunities… it often just happens. But after a year out on disability, I know that the world will still turn if I am not there to deliver a lesson on theatre history. I will not get a shiny gold star for working when I am truly ill and need to be home. On a really good day, I even feel less guilty for saying no to things, knowing without boundaries I will burn out now more than ever. In addition, having a life outside of teaching makes me a better teacher, because I’m happy and fulfilled in multiple areas of my life. Going forward, I plan to use all 10 sick/personal days that I’m contractually permitted. I’m thankful that I have coworkers who have supported me in setting boundaries and making changes to plans, and I hope to continue seeking fulfillment in all the different roles I have outside of the classroom.
I am connecting with a wider audience about our shared experiences.

What a difference a year can make!

I’ve shared here about CancerCon and just how transformational that event was for me. I loved getting validation of my experiences in a cancer patient space, and I would not have felt nearly as supported going into doxil infusions without that event and the connections I made. Next year, my role is going to grow – I’ve been asked to be a keynote speaker at CancerCon 2020 in Seattle! I’m equal parts humbled, honored, excited, and terrified. I like to remind myself when things are scary that I’m already doing chemo, so as my track record shows, I’ve done harder things. This will be a victory lap in comparison.

If I had to summarize, I think cancer has made me more human. I’m not a guru, or an influencer, or even really qualified on anything other than my own experience. This is not a place where I will reveal the secrets of “doing cancer well,” because I certainly don’t know what that looks like and don’t pretend I do. This blog is a place of reflection. Writing for you all has helped me process personally, and it’s helped me feel heard publically.

From the bottom of my heart, thank you for taking the time to be a part of my growth.

image0 (1).jpeg — A photo frame from World Cancer Day, February 4.

appointments, reflection, treatment

Treatment Updates and 2020

December 30, 2019December 30, 2019 ckosyla

Hi, everyone – it’s been a while!

I hope you’ve been enjoying the last days of December. I wanted to give you an update on where I’ve been and where I (think I) am going.

December 2019 Scan Results

In case you haven’t already heard (quick reminder: you can find me on instagram @girlmeetscancer, it’s where I’m spending most of my social media time these days), the results from my December MRI are back. My tumor is continuing to shrink! It’s down another 0.7 cm overall, which brings my total shrinkage since beginning doxil to 1.4 cm total. I celebrated with a Christmas themed selfie in front of my tree.

Treatment in 2020

After my infusion last week and meeting with my oncologist, we agreed to another three additional rounds and a scan. So I’ll have infusions number eleven and number twelve in 2020, followed by a scan. And then, it’s a big question mark.

The hard thing about desmoid tumors is that they are, in my oncologist’s words, “notoriously unpredictable.”

Treatment: My treatment options are – how to put this? – either dismally uncomfortable or not medically appropriate. There’s one other commonly used IV infusion, but it’s insanely aggressive and would treat me worse than doxil. I’m not a candidate for HIFU or cryoablation, which are high-tech surgical procedures, since my tumor is too large and too close to my brachial plexus. That leaves oral chemotherapy, of which there is one viable option remaining: pazopanib. Pazopanib is related to Sorafenib/Nexavar, the drug I was on for 9 months last year and gave me a whole host of issues: constant nausea, vomiting, emergency room trips, etc… only Pazopanib’s side effects are reportedly worse, which makes it very unappealing as well.

Here’s why pazopanib could be awesome: It could maintain the shrinkage that I spent a year to gain.
Here’s why it is scary: If all goes according to plan, I’ll be headed back to work once doxil is over… only I’ll be headed back then on a drug where I can expect nausea, vomiting, and more GI issues.

Active Surveillance: There is a chance that doxil switched my tumor into a pattern of stability/shrinkage that it had previously not seen, and that’s potentially a vote in favor of active surveillance (what is sometimes referred to as “wait and watch.”) Meaning, I’ll go off of all medication and get scanned after a specific amount of time to see if this thing is growing/shrinking/stable (which sounds like the name of a terrible reality show).

Here is why active surveillance could be awesome: Boy oh boy, do I miss my body. It’s vastly different than the body that I’m in now. My body, free of chemo, free of treatment side effects…. I can’t quite remember what it’s like to not have pain caused by treatment, or fatigue, or nausea, or some combination thereof every day. I’d love to see what this old girl can still do.
Here’s why it is scary: I could lose all of the shrinkage I fought so hard to achieve over the past year of doxil infusions. My tumor has never been stable without medication. The idea of this leap of faith terrifies me.

* If I were to go on active surveillance and my tumor were to grow, I would be eligible for a clinical trial that’s currently enrolling… but only if it grows 20%.
** If I enrolled in the trial, and I’m the control group that’s getting the placebo and my tumor continues to grow – I’d be switched to receive the drug… but only if it grows 20%.
*** I’m potentially looking at 40% overall growth before getting actual treatment.

As you can see, there’s a lot of different factors to consider. It’s hard not to look at everything and be overwhelmed, so I try to look at it one step at a time. Some days I do a pretty decent job at achieving this perspective and other days it’s a glorious mess. So it goes.

2019 in Review

I’m trying really hard not to fight this deeply engrained thought that I haven’t accomplished anything this year. I didn’t get to do… well, a lot of what I love. It’s hard to fight this notion that productivity is the only important measurable outcome of life, not just because I’m inapprorpiately Type A, but because people always ask how I’m “staying busy” while on disability, or how I’m “keeping my mind sharp.” The truth is, I’m resting 25 out of 30 days of the month. I’m watching The Golden Girls, napping, or working on a puzzle. (If that kind of productivity matters to you, I finished 6.5 seasons of The Golden Girls and finished 6 puzzles.)

At the end of the day, I stayed alive, and I try to tell myself that’s enough. And when that doesn’t work, I try to focus on numbers that help me feel proud, even if it’s just for withstanding.

$150,000 worth of chemo
$11,029 raised by the Unicorn Squad for the Desmoid Tumor Research Foundation
1,732 miles flown for CancerCon
900 miles traveled for infusions
210 miles traveled for a second opinion
76 members of the Unicorn Squad at the Running For Answers 5k
30 total researched social media posts for the Desmoid Tumor Awareness Month
10 infusions
7 prescriptions for chemo side effects
4 MRIs
2 surgical consultations
1.4 cm of shrinkage
1 tumor, measuring in at 4.9 cm by 10.9 cm by 8.2 cm.

In case you need a visual: this is a scale model of my tumor, made out of PlayDoh and decorated because that’s just how I roll.

This is not at all what I thought my life would look like at age 30. I’m still angry about it, to be honest. I still feel robbed of normalcy. To deny those facts would mean taking the humanity out of this experience and reducing the narrative to a neat, linear story. I’m not interested in either of those things. I’m here to tell the truth.

So here it is, the truth in all its messy complexity and unpolished thoughts: I don’t know what any of these pieces or numbers or treatment options mean. I’m grateful in some ways and very much aching in others. I feel simultaneously more connected to other patients than ever and also so lonely it hurts. At the end of the day, all I can hope is that the noise I made this year, whether advocacy, fundraising, or simply shouting my story loud enough so someone will hear, means that someone else will someday enjoy a greater sense of normalcy.

Thank you for reading. May we all experience health, peace, and joy in 2020.

experience, guidance, reflection

Beauty, Chemo, Remembering to Be Thankful I Do Not Have Malaria

August 25, 2019August 27, 2019 ckosyla

The Mirror

Photo by **Amine M’Siouri** from **Pexels**

A few years ago, I attended a summer barbeque with a friend- for the sake of the story, we’ll call her April. It was a nice afternoon, and I met several of her friends that I’d never met before. After we left, I mentioned to April how kind they were. When I mentioned one person in particular, April said, “oh, yes, her. I wish you had met her a few years ago. Cancer stole her beauty.”

I wish I could tell you that this is the point in the story where I told April that was an incredibly cruel thing to say. I wish I could tell you that I stood up for this cancer survivor, this kind woman who chatted with me as we ate pasta salad and shared details about our lives. But I didn’t. I remember that the comment struck me as unfair, but embarrassingly, I didn’t say anything.

It’s been several years since. April and I are no longer friends, and other details of our friendship are small and widely inconsequential. Those words though – cancer stole her beauty – have continued to ring in my ears, especially in the time since my diagnosis.

When I look in the mirror, I sometimes wonder if someone would say the same about me. Since starting treatment, I’ve noticed I look tired often. I have some new lines around my mouth and eyes when I make certain expressions. I have marks that look like bruises or healed wounds around my feet; my joints are darker and sometimes look bruised or discolored as well. I also have more frequent breakouts, and for a kid who had cystic acne and was on two rounds of Accutane before the age of 16, it plays deeply into my adolescent insecurities. I put on weight from two weeks of Gleevac in December, and it hasn’t gone anywhere as I’ve regained my appetite and I’ve rested more than ever before. I have a noticeable two-inch scar from a deeply misguided surgery and a sizeable growth which raises my chest and extends under my right arm. Maybe it’s because I failed to stand up for the woman with whom I’d eventually share a deeply painful commonality. Maybe it’s because I turned 30 this year. Maybe it’s because these chemicals are truly changing the way my body looks and behaves. But I see someone different in the mirror than I did a year and a half ago. The changes are enough to send me searching for the ways in which I am still me: some days they’re harder to find than the things that have changed.

And underneath it all, a deeper, more complex issue: this cancer started with me. It’s my own cells, my own body, rioting against me. I often wonder if it would be easier to accept a pathogen, to blame an infection, lifestyle choices, even a genetic defect. But this tumor started with nothing else other than me, and ultimately I’m waging a campaign against my own, faulty body.

I’m not writing this to fish for compliments or ask for pity. It’s honestly bigger and more important than all that. Body image, beauty, mortality: these are some complex and entangled issues. I don’t have them figured out and I don’t feel this is the place to try to write a dissertation on them. But I don’t need to tell most of you that to grow up female in America means you absorb countless confusing and damaging messages about beauty and body image. A life-changing diagnosis didn’t do that any favors. Like many other American women, I’m working on sorting and reframe some of those ideas.

Changing the Conversation

Photo by Kevin Jesus Horacio on Unsplash

Here’s where my head’s at. We need to change the way we talk about cancer patients, beauty, and their bodies: not just for current patients, but for the sake of those who will someday be diagnosed. When that post-BBQ conversation took place, I could have never anticipated that I’d become a card-carrying member of the Cancer Club just a few short years later. I sometimes wonder if I’d interpret many of my physical changes in my own body as dramatically if I had not internalized hurtful comment.

I have received countless body-related comments since beginning treatment a year and a half ago, and some of them were unintentionally… well, unkind. When I was on Nexavar last year and constantly nauseous, someone commented, “well, at least you’ll lose a little weight!” As if losing weight is always the ultimate goal for women, or commenting on people’s bodies with unsolicited advice is acceptable. A few months later, I wondered bitterly if this person would say the same thing during an emergency room visit when I was unable to keep down liquids. “Hey,” I would ask her, “am I doing this right?” Food and nutrition during treatment can also be complicated subjects, because food is deeply personal and cancer is deeply painful. When I first announced my diagnosis, someone commented “I’m so sorry. You need to go 100% vegan immediately.” To which I say: let the person on chemo eat what they darn well please. I’ve been a plant-based vegetarian for over 10 years because that works for me. I also ate a Chipwich a day for about a week straight in July, and I have zero regrets, because that worked for me, too.

There’s another kind of comment that is a bit harder to unpack because it’s well-intentioned, it’s genuinely a compliment, and I’ve said it myself countless times: “you look great!” I appreciate this compliment. I do. The tricky thing is this: it doesn’t always leave room for is the real and present suffering that’s going on just beneath the surface.

There’s this image we have in our minds when we think of cancer patients: bald, smiling, usually thin. I do not fit that mold. I have, thankfully, kept my hair. I have not lost weight, though I have a reduced appetite and I try to go to the gym to make up for my 23 hours a day of restfulness. Truthfully, I’m really thankful I can skate through most moments in public without looks of pity or confusion. But it doesn’t come without its complications. A cancer patient doesn’t have to “look” any certain way to be a cancer patient. Sure, there are some commonalities – I have yet to see someone my own age on the infusion floor – but with mixed responses to drugs and innovations like Cold Caps, some cancer patients are able to maintain a level of appearance normalcy on a more routine basis.

We know that with everything from mental health to social media, appearances can be deceiving. Mine is no exception. Many of the side effects I’m currently facing can’t be seen or easily measured by others. My fatigue, the way it hurts to swallow, my ocular migraines and occasional vision issues, the pain in my shoulder: you can’t see this stuff. Sometimes it takes all of my energy to shower, and my outside appearance does not match my inner reality at all. So sometimes when I’m told “you look great,” I am just tired, and I want to respond that I would trade feeling normal over looking normal any day of the week.

Is this making sense? It’s a nuanced thing. I’m trying hard to explain the complexities of this without policing how people speak to me.

So here’s where I stand: Does receiving that compliment bother me? Personally, no. if I look stunning, and you want to say so, hey sure! Tell me! It might brighten my day. But just know it’s complicated, and every patient feels differently about this. The bottom line is that patients usually just want to have their crappy situation acknowledged, and that goes whether they are wearing jeans and just had an expensive blowout or are wearing sweatpants and a wig. You can tell me how you think I look- but be sure to ask me how I feel.

There is one exception to this rule. Please do not, under any circumstances, tell me that my tumor looks bigger or smaller. There are a number of things that can contribute to my tumor appearing a certain way and 0.0% of them are helpful to my psyche. In the past, comments about “it looks bigger!” or “hey! I think it’s smaller!” have sent me into either 1. an anxiety-filled panic or 2. a joyful optimism which has later ended in a crushing reality. So I learned relatively early on to let my radiologist, oncologist, and the UPenn tumor board measure my tumor – no one else.

What’s Working

A few months ago, I started listening to a podcast called This Podcast Will Kill You, which is hosted by two disease ecologists who discuss infectious disease and related topics. While it sounds grim, it’s actually helped me appreciate the way my body is working- which is great since I often think about (ahem, write this whole blog about) things it is doing wrong. Listening to this podcast I’m reminded that the list of things I do not have is staggeringly long! Malaria, encephalitis lethargica, hookworm, zika, measles, scurvy, hanta virus: my body is doing a pretty good job at not contracting things.

So when I get stuck on how this tumor has turned my life upside down, I remember to thank my parents for getting me vaccinated and my immune system for doing its darndest to keep me healthy. When I feel sorry for myself for getting wrinkles and feeling really old some days, I try to remember that growing older is a privilege. It’s a fate reserved for very few, and I hope I’m one of them.

Should that be the case, when my desmoid tumor and I turn 100 years old, you can bet your bottom dollar we’ll be riotously celebrating and eating our smash cake while wearing a crown. For me, there’s just no other way.

cupcake

experience, reflection, treatment

Three Uncomfortable Truths

June 14, 2019 ckosyla

Let’s get this out of the way: I had a scan last Thursday. My tumor hasn’t changed significantly. There’s a very tiny measurement of growth. One of my lymph nodes is notably enlarged, which they think is an immune response at this point.

Bottom line: I’m suffering all of these side effects with no real difference in my tumor.

It sucks.

I’ll probably have three more rounds of Doxil, as scheduled. I may be eligible for a clinical trial. A lot is up in the air, as usual. I’ll let you know as I know.

After the phone call, I holed myself up in my apartment. I cried. I told my parents to ask people not to call. I cried some more. I ignored text messages and phone calls, opting to post my disappointing news on Facebook and Instagram to rip the Band-aid off and relay the news as quickly as possible. I watched four straight episodes of Chernobyl, because nothing made sense except for the world being on fire and people looking at each other asking, “how could this have happened?”

In the days since, I struggled to get out of bed. (I’m increasingly grateful I have a dog to hold me accountable.) I’ve noticed a few thoughts circling in my head, and the more I think about them, the more they made sense. They are not nice or comfortable. They are not anything you will find on a greeting card. Maybe they are wisdom, maybe just my own thoughts cloaked in sadness, or bitterness masquerading as knowledge, but nevertheless, they’re hard-won and I believe them to be true, for me, right now.

Three Uncomfortable Truths

1. It is not my job to make anyone comfortable: it is my job to tell the truth.

I recently read a memoir by Georgia Hardstark and Karen Kilgarif, the hosts of one of my go-to podcasts, My Favorite Murder. There’s a beautiful passage in the book in which Karen describes a picnic she attended. Her mom was diagnosed with Alzheimer’s, and a friend asked her how she was doing. Instead of resorting to sugar-coating the truth or writing off her own experience, as she was accustomed, Karen said a “truer thought hit her.” Here’s what happened next. Read the whole thing. It’s worth it.

“Having a parent with Alzheimer’s is like living inside a horror moving that’s playing out in real time. It’s as horrifying and awful as it is tedious and mundane. It’d be like if you lived in the movie Jaws. You’re happily swimming in the ocean and then everyone starts screaming, ‘Shark!’ You start to panic, but then someone else yells that the shark is twenty miles away, so you calm down a little. But then a third person gets on the bullhorn and says you’re not allowed to get out of the water ever again. So you start panicking and flailing and fighting and yelling for help. You scream about how unfair it is, you having to be out in the ocean with this killer shark alone when all those other people get to be on the beach… You finally start to accept that it’s your fate. But then you start thinking everything that touches you is the shark. You can’t calm down because you can’t stop reacting to things that aren’t there. You grab wildly at anything that looks like a weapon, but every time, it turns out to be seaweed… You get really tired and cry so hard you think your head will burst. And then finally, you gather all your strength and turn and look at the shark. Now it’s 19.8 miles away. It’s the slowest shark in history, but you know it’s coming right for you. And after five years in the water, you start rooting for the [explative] shark.”

Karen said the mood of the barbeque changed. She was embarrassed that she overshared and brought things down. And then a friend who had his own experience with Alzheimer’s grabbed her by the shoulders and said she was so right, that he felt the exact same way. “After that, I never lied when someone asked me how things were going with my mom. Instead of worrying about the comfort of the person who was asking, I started thinking about whoever might be listening to my answer,” Karen explained.

I love this story for so many reasons. I’ve written before about how being on chemo without progress is like treading water. I have wanted the shark to hurry on up, too. But most importantly, like Karen, I have decided not to waste any more words or time on sugarcoating my experience.

I started this blog to keep people updated on my treatment and to share my experiences in an effort to increase understanding, but more than anything, it is a way for me to shout out into the void and say “hey! Anyone else out there?” And let me tell you, it’s such a relief that a few people have shouted back, “Yes! Here! I am here!” I have met several people, both in person and online, that are also facing this confusing, life-altering diagnosis. That this blog has a wider audience than just desmoid patients or cancer patients is still rather remarkable and surprising to me. So if it has some wider-reaching posts or more enduring wisdom scattered among the treatment updates – awesome. But I’m truly writing for the 5 people that are in the water too, who respond, “oh my gosh, this shark. It’s awful.” And for their sakes, I will not lie or water down my truth, because maybe, on the rare occasion when the stars align, it will be exactly what they need to hear.

2. I do not owe anyone my optimism.

As I read recently in the Benediction for an amazing woman who the world lost too soon, “[b]lessed are they who can’t fall apart because they have to keep it together for everyone else. Blessed are those who ‘still aren’t over it yet.'”

I’m sorry to tell you that sixteen months post-diagnosis, I’m still not over this whole tumor thing. On Friday, I wasn’t over my results being so disappointing. I’m still not. When your skin is blistering and peeling, your joints ache, ten hours of sleep is insufficient, and it hurts to simply have your elbows touch your bedsheets, it’s really hard to keep your chin up, to expect miracles, to stay positive. These are things that I hope to do, and I expect I will someday, but I do not have the bandwidth for right now, and I think I’m allowed to be furious and rage at the world for a bit.

As a society, we like our cancer patients bald and brave. We like the completed, abridged story: diagnosis, successful treatment, the afterglow.

There is a truthful but uncomfortable article that I came across last year in which the author writes, “I think that as a culture we place unreasonable expectations on the people we love when they’re very sick. We need them to be strong, upbeat, and positive. We need them to be this way for us… There’s nothing wrong with hope. After all, Emily Dickinson says, ‘hope is the thing with feathers,’ but not at the expense of canceling out all the other complex emotions, including sadness, fear, guilt, and anger. As a culture, we can’t drown this out.”

I am glad to be someone who is perceived as happy and hopeful… but I am no Pollyanna. And I certainly do not want the fact that I have cancer to distill my personality to brave, optimistic, and positive. Maybe I am those things, but if I read that character in a play, I’d call her boring, flat, and unrealistic. Ask anyone in close proximity to me and they’ll confirm: I can be moody and irritable, and bitter and sarcastic. (You know, human.) I do not have the energy to pretend to be something I am not. As I said in uncomfortable truth number one, I’m interested in the truth. If my truth is hopeful some days, then it’s hopeful. If it’s angry others, then it’s angry. Neither of those things is bad, and both of them are true.

3. It does not get easier.

It just doesn’t. Not after the pathology comes back. Not after telling the news a million times. Not after half a dozen MRIs. Not after starting a blog. Not at all. Sorry.

This is the analogy that makes the most sense to me, shared on a friend’s post on Facebook.

“Imagine you’re going about your day, minding your own business, when someone sneaks up behind you… You feel something press up against the back of your head, as someone whispers in your ear. ‘Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life. I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?’ This is what it is like to be diagnosed with cancer. Any stage of cancer. Any kind of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.”

I can hear you asking: so if it doesn’t get easier, then what?

I don’t honestly know. I’m still working on it. But maybe you learn to celebrate the tiny victories that you can, like getting out of bed, making it through a class at the gym pretty successfully, or not needing a painkiller. You smile. You find professionals who can help you make sense of this mess and hopefully give you tools to cope. You cry. You hope and pray that some of this has a purpose. You try, with every breath, to put one foot in front of the other and remember that despite it all, you are here. And you try to be grateful for it. Maybe some days you’re successful, others not so much. But you try, and it is enough.

experience, reflection, treatment

Buddhism, Chemo, and Me

May 31, 2019May 31, 2019 ckosyla

buddha-wallpaper

I took an Intro to Buddhism class in the spring of my sophomore year of college. Having grown up with enough Catholic education to navigate my way around symbols of saints and the metaphors of resurrection, I decided to immerse myself in a world totally new to me. For the sake of complete disclosure and honest journalism, some of my best friends were also taking it, and it filled a pretty sweet spot in my Tuesday/Thursday schedule along with dance class and dinner. The professor was an adjunct from the city and would cancel classes when his kid got sick – which we noticed always seemed to be on the sunniest, most beautiful days. He would teach while sitting in a chair, told a lot of stories, and seemed to genuinely care what we thought. We did a lot of laughing and listening, and because of this, I remember a good bit of what we were taught.

The concepts of impermanence and suffering are at the core of Buddhism. I suppose they are in many other religious, ashes to ashes and all that, but the Buddhists hold this as their central tenant and arguably discuss it more than anyone else. The Buddha taught that we are trapped in this thing called samsara, an endless cycle of birth, suffering, death, and rebirth, broken only by reaching nirvana and obtaining enlightenment. (This led us to joke as our laptops acted up that they were attempting to escape samsara.)

Consequently, the Buddhists have a lot of labels around suffering. There are many different types, but my favorite is hands down the Suffering of a Fine Meal. A delicious dinner, the Buddhists would argue, is a form of suffering – because it’s in our human nature to miss what we had. We don’t just think, “wow, what a great meal!” but, “wow, what a great meal! Man, that was just SO good. I wish my portion were larger. I wouldn’t have been able to finish it, but taking some of this home would have been great. Think we can come back here again?” Way back before foodie culture, the Buddhists knew we’d be taking photos of our food to proudly post on Instragram.

I’m learning a lot about impermanence these days. The infusion cycle is different for everyone, and while there are general patterns, nothing can be certain. Here’s the general pattern: on infusion day, you get steroids in addition to your prescribed poison, and you feel kind of great. They hang out in my system for a few days, giving you a little boost of fake energy. During these days, I try to make the most of it and do some cleaning, socializing, and gym going. I see a previously unprecedented number of Broadway musicals. I feel guilty for being out of work and miss my students. During that time, I often think that this chemo thing really isn’t so bad and maybe I can be like those people on 60 Minutes who train for marathons during treatment. Lather, rinse, repeat. It’s a heavenly meal.

About a week later, I’m brutally humbled as the wall of fatigue hits. As though little weights are attached to all of my limbs, it is a struggle to put my feet on the floor next to bed or ignore the siren song of the couch and Netflix. In the coming days, I’ll also possibly enjoy a metal taste in my mouth, painful mouth sores, peeling and burning hands, itchiness, a rash, and increased tumor pain. Before I know it, my thoughts have become patterned in the opposite way. I think that I will never have energy again and wonder if I will ever get to do anything I love, like travel or dance or wake up to watch the sunrise, ever again. Ah, that meal, remember how delicious it was?

Sound dramatic? Fair enough, but I think it’s universal and part of this human nature business of not believing in impermanence. A comedian named Jim Jefferies accidentally gave him and his son food poisoning. In the throws of his son’s illness, he described the pattern of thinking as, “well, this is me now. This is how things are from now on.” I would venture to guess that most of us have had that very thought in a similar situation, whether four or forty four. Think back to the last time you had a stomach virus. Not a quick one and done job, but a real rocking, bring the blanket in and sleep on the bathmat trip. Hard to believe it would pass then, right? (And if you have gracefully edged around this with a level head and a wisdom beyond your years, and you think I am just catastrophizing, remember that not too long ago, I bounced from doctor to doctor and was told I was making a big deal out of nothing, only to be told it’s a sarcoma… So bear with me; I’m fighting my own experience here.)

Eventually though, that “this is my life now” feeling does pass. I’ll start to feel almost normal. A few days before my next infusion, the combination of renewed energy or anxious anticipation will lead me to do insane things, like re-pot houseplants at midnight. (So, not quite normal, but you get the picture.) It’s absolutely bittersweet because I want to enjoy the normalcy, but I know the next part of the story. I know I’ll feel terrible again soon. It’s really stinking hard to be present, and live in the moment, to live, laugh, and love, or whatever the other wall art in Homegoods is preaching these days.

An Explanation

“Do I contradict myself? Very well, then I contradict myself, I am large, I contain multitudes.” — Walt Whitman

In trying to create a context for my experience, this “chemo samsara” really helps me understand myself. It is why I feel some days that I have been called to be an advocate for patients with a rare diagnosis, but others, I don’t want to talk about how I’m feeling. It’s why I am itching to write a blog post on some days, and others I opt to numb out with another season of Parks and Rec. It’s the reason why I wear a “Straight Outta Chemo” shirt at the gym and also why I can’t motivate myself to go. It’s why, despite years of saying I fell out of love with New York, I take the train in so I can be just another face in the crowd.

It’s why many days I want people to text me and so I don’t feel forgotten, and other days, I want to be forgotten completely. It’s why silence is scary and why, despite having practiced and taught both yoga and meditation, I drown myself in podcasts to listen to anything other than the sound of my own thoughts echoing in my head. It’s why, on the days where I feel like complete crap, I hate being called brave, even though it is a huge compliment and a perfectly wonderful thing to say to someone. But I don’t want to be brave. I would rather be a coward and have my old life back. Like a child screaming from the back of my throat, “please, I’ll be good, I promise!” I am clawing at the leg of something bigger than me, begging for that thing I just had in my hands moments before.

This round of chemo, while in many ways made more tolerable by being out on disability from work, is infinitely harder because I don’t have work to distract me. I’m living in a house of mirrors, where every moment is a stern invitation to look at myself. In all this physical mess, I’m also being challenged to answer that great, question of, “who am I?” Like a second adolescence, it’s changing every single day, perhaps exactly as it was before, only now I have nothing to distract me from this business of discovering who I am.

I’m still figuring it out, but here’s what I’ve got so far: contradictory multitudes. I am complex and straightforward, defeated and resilient. I am hopeful and discouraged, angry and I am grateful. I am healthy and sick, grief and laughter. I am no longer and I am in spite of. And on the days when nothing else makes sense, I take a page from the poet’s book.

“I took a deep breath and listened to the old brag of my heart. I am, I am, I am.” — Sylvia Plath

reflection

Cancer-versary: My First Year, in Self-Portraits

January 31, 2019February 1, 2019 ckosyla

January 31, 2018

I didn’t know it when I took the photo, but my life was about to be turned upside down.

I sat waiting in the office of a Thoracic Surgeon with the University of Pennsylvania, number six in the line of doctors I’d seen about the swelling near my collarbone. I had grown restless and annoyed as I waited. He was late, and I was already reeling from the radiologist’s recent assessment: a hematoma, caused by my surgery three months prior.

The photo I sent to my mom as we waited in the office where I’d be told a short time later I had cancer. “Un-selfie,” January 31, 2018.

I took a very ridiculous, very unflattering selfie, (the one seen above), as I have done more than several times. In an effort to break up the silence and my own irritation, I sent it across the room to my mom, who had insisted on attending. A few friends offered to come in her place, but being the World’s Best Mom, she felt better being there, just in case.

Over an hour passed. Finally, the doctor came in with a nurse practitioner, shook my hand, and started to speak. Not particularly quickly. Nothing different in his tone than as if he were explaining how something worked in a piece of machinery; say, a car. But he had a lot to say. He explained that as I waited for the past hour, he had been trying to reach a radiologist he trusted to look at my scans. The radiologist didn’t feel it was a hematoma at all.

And then he used the word sarcoma.

He kept talking. No one moved or made any sounds, as though we were listening to a discussion about someone else’s life. I stopped him. “You said sarcoma. Are you telling me I have cancer?”

I don’t remember his response.

The room didn’t spin. The floor didn’t tilt, my legs didn’t give out from under me. Everything was unnaturally cold and still. I excused myself and rushed to find a bathroom, where I let out a wail that was more animal than human. There were no tears, which felt fair. How could there be enough tears to match the scale of the news I’d just received?

A few moments later, I let myself back into the room. There was a lot of talking. My mom was asking questions, writing down notes, furiously springing into action. There was a folder passed to her with handouts and phone numbers of places to call. The words biopsy, MRI, and catscan were used. Not knowing what else to do, I made a joke about having a team now. My mom drove me back to my parent’s house.

I don’t quite remember the rest.

I know that at some point, I sent texts to a few friends. I told my boss the news and that I wouldn’t be in for the rest of the week. In the coming days, I collected medical records from various doctors. I went to the Perelman Center for the first time and had an MRI, a catscan, and a core needle biopsy done.

I waited. Days passed.

I went to the movies and saw The Greatest Showman. I watched the previews and wondered if I would be alive when the advertised movies opened. I slept when I could, ate when I could. Monday came. I went back to work, because I didn’t know what else to do. I told my coworkers all at once, in a meeting, because it was easier than facing whispered speculation or fearful yet compassionate glances in the hallways.

One memory stands out from the rest of the rest, crystal clear in its detail. It was late, and I stepped outside to bring my dog out. It was cold, but quiet and calm – so much so that even the frosted tufts of my breath seemed too garish for the evening’s simple beauty. The moon was bright. I remember looking up and thinking, if this is it for me, I could be okay with that. I was loved by the most wonderful friends and family anyone could ask for. My profession fulfilled me personally, professionally, artistically, and spiritually. I enjoyed too many adventures to name: singing with a jazz band, training with a circus, walking 500 miles from France to Spain. I loved and had been loved. I certainly want to stick around, but if I had no say in the matter, I held the knowledge that I had done the most with the time I have. Peace- quiet and small yet strong- settled somewhere within me.

More days passed. Valentine’s Day came and went. And on February 15, I finally got a call with my diagnosis: fibromatosis, desmoid-type. A google search said it wasn’t cancer. I called my thoracic surgeon and my nurse. They kindly replied that while google might say that, it very much acted the same way and needed to be treated as such.

The rest is a blur.

January 31, 2019

It’s been a year: 525,600 minutes, for any Rent fans who may be reading this. Those movies I saw in previews have long ago opened and closed. I’m still here.

There have been times where I have felt forgotten, that I cannot convince people to take me seriously, or that I have every reason in the world to despair. At other times I have felt guilty, that others have it worse, or that I am making a big deal out of nothing. My life has never been harder. It’s also never been filled with so many reasons to hope.

I’ve been shown the kind of immense generosity, kindness, and compassion that pops up in occasional news articles about goodness in the midst of tragedy- the type I’d read about and believed in but never experienced firsthand. I received cards, messages, kind words from people I have never met. In eight months of fundraising, you’ve donated over $23,000 for the Desmoid Tumor Research Foundation.

When I last wrote, it was with the news that I was trying another oral chemotherapy called Gleevac. Unfortunately, it did not work out as I was unable to tolerate the side effects. I put on ten pounds in two weeks. My face was so swollen in the mornings my eyes could barely open. My joints and muscles ached and my pain skyrocketed. The day after Christmas, I was taken off of it, fearing that the treatment could have actually made my tumor grow. Fortunately, once off of the drug, my pain improved. Better still, a scan done two weeks ago showed that my tumor did not grow. It remains “mostly stable” with “small amounts growth.”

I’m at a crossroads with treatment once more. While stability is in many ways good news, it’s not shrinkage. My tumor is still close to my brachial plexus. It’s taken my pectoralis major, my clavicle, and two of my ribs and pushed a lot more out of the way, rendering my shoulder area unable to operate as a healthy person’s shoulder would. My pain has increased. In order to finally shrink this tumor, now the size of a grapefruit, it’s looking like aggressive treatment will be necessary. I haven’t made any decisions yet. I’m taking time to meet with more doctors and make the decision that’s best for me, my health, and my life. I do not have any updates yet.

What I do have is the thing I once feared most I would lose: time.

Here, Now.

I’m calling today my Cancer-versary. I’m not quite sure what one does to celebrate a Cancer-versary, so I’m making it up as I go. I bought myself flowers and took the day off of work, my first personal day this year. I spent the morning snuggling with my dog; I think I’ll read and make cupcakes later.

With the chaos of the past several weeks and an indeterminate plan for the future, I didn’t really know how I’d feel leading up to today. Now that it’s arrived, I mostly feel what I did that night I stepped outside under the bright, beautiful moon: I’m thankful.

Thankful for my mom and dad, who have shown me the true meaning of unconditional love, and who would (and have) done anything possible to make my life easier.

Thankful for my family, especially my brother and sister, who take the time to check in on me during their full lives and have been there every step of the way wanting to know how they can help.

Thankful for my friends, who, when it’s hard to know what to say, let the silence sit between us without judgment, and who provide a steady stream of photos, memes, and stories to keep me laughing.

Thankful for my coworkers, who offer their unflinching support and always say yes to any of my requests for help.

Thankful for my students, who give me reasons to smile no matter how I’m feeling and whose innocence, empathy, and love remind me what’s truly important.

Thankful for my medical team and the Desmoid Tumor community, who have embraced me and guided me through this terrifying maze with a voice of resilience.

I’m thankful for being here and for having so many reasons to fight.

“With all its sham, drudgery, and broken dreams, it is still a beautiful world.” – Desiderata