experience – 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.

experience, guidance, treatment

Cancer Patient Approved Gift Guide

November 27, 2020 ckosyla

With possibly the strangest Thanksgiving of the last 50 years behind us, many of us are turning our attention to the holidays. (Unless, like me, you put up some of your decorations prior to Thanksgiving because you needed a little Christmas, right this very minute.) If you have a cancer patient in your life, you might be completely stuck on what to give them. Never fear, I’m here to help you, and like Oprah Winfrey, I’ll provide you a list of my favorite things, with a little help from my friends. Sorry, I won’t be giving out cars. I’m not sponsored. Though if there are any takers, I’ll gladly promote you!

GUIDING GIFT PRINCIPLES

First: do a bit of reconnaissance. To provide a gift which is thoughtful and helpful, details are needed to fill out the whole picture of the person’s treatment. Consider things like:

What is their treatment plan? Does it involve surgery, chemo, oral chemo, etc.? What side effects are they having?
Do they have basic needs cared for? Do they need help with bills, meal train, gofundme, etc.?
Are they using any additional therapies? Are they receiving acupuncture, using salt tank floats, etc.?

You can always run a plan by them so you make sure they’re medically cleared to accept your gift. Awkward, I know, but something like, “I’d really like to treat you to x for Hannukah. Is this something you could use right now?”

Second: they might not want anything “cancer-y.” For example, women with breast cancer might not want a pink ribbon on everything. Consider what they enjoyed in their lives pre-diagnosis, because that person is still there under all the patient stuff they’ve needed to endure.

Third: tell them not to write a thank you note. Better yet, tell them they are under no obligation to use what you gave them. This takes the pressure off of the recipient to feel gracious.

SOMETHING THEY WANT, SOMETHING THEY NEED,
SOMETHING TO WEAR, SOMETHING TO READ

Thinking about gift-giving in this way with categories is really helpful, so that’s how I’ve broken it down below. These suggestions are not only from me, but also from other awesome patients who were kind enough to give me their own suggestions when I sent out a call on instagram.

Something They Want

Gift card for a streaming service. You can get Spotify for music, Hallmark Christmas movies, Disney+.
Headphones. This is especially helpful when treatment floors or machines are loud.
Pampering. Go for unscented lotions since many fragrances can be bothersome or effect the skin. You can even research oncology massage in you area.
Virtual makeup lesson. This is a great gift for patients who are looking to get some confidence back and can offer skills like how to draw on eyebrows, etc.
Low-energy ways to spend time. Puzzles and color by sticker books are two of my favorites.

Something They Need

Cash. Cancer is expensive; let them decide where it’s best spent.
Gift cards. Food delivery services like Doordash or Grubhub, grocery stores, gas stations are all great, practical ideas.
Donation to research. I recommend checking Charity Navigator first to see where your money goes.
Water bottle. Staying hydrated when in treatment is super important.
Port pillow. If the recipient has a port, it will keep a seatbelt from rubbing up against the it. If you’re crafty, here’s a tutorial to make one on your own.
Mastectomy pillows. For a recent mastectomy patient, these are insanely helpful in keeping the arm lifted away from the torso. There are also patterns and tutorials to make your own online.

Something to Wear

Alaska Bear Silk Sleep Mask. One of my friends swears by this. She said it is insanely comfy and helps the wearer nap in a bright infusion room.
Hygge Jacket. This is a small business that I learned about while attending CancerCon 2019. What’s awesome about this jacket is that it allows for port access without taking the whole snuggly layer off.
Blankets. I especially recommend heated blankets or weighted blankets.
Socks. I loved wearing fun, cozy socks to treatment! You may want to consider getting slipper socks or something with a non-slip addition to the bottom if the patient is a fall risk.
Cozy hats. Especially if hair loss is a possibility, this is a great choice. Having a bald head means you’re really chilly! I really like the company Love Your Melon. Their hats are super cozy and they do lots of great things for the pediatric cancer community.
Cozy, soft clothing or pajamas. Are you sensing a theme? Go cozy! If the patient has had surgery to the chest, like a mastectomy, look for things that have buttons that open in the front. If the surgery was in the abdominal area, go for long nightgowns or sleep shirts so there’s no pressure to that area.

Something to Read

*Consider audiobooks to give tired patients a break. Also consider the nature of the book. Does the patient want to read about other cancer stories? If not, you may want to stick to fiction. Also, peruse the book and make sure it doesn’t center on death.

Better Together by Jessica Walker. This book features a variety of perspectives from patients with lots of different diagnoses. (You might spot a familiar name in there!) What I love about this book is that it reinforces the idea that there is no one “right way” to do cancer.
Everything Happens for a Reason and Other Lies I’ve Loved by Kate Bowler. This book so honestly captured the experience of diagnosis and treatment that I needed to put it down and take breaks from it. Kate is a spectacular writer and human. If you’d like to preview what the book is like, you can check out her TED Talk.
Fiction of the pure escapism variety. What’s better than dropping into another universe? My friend Annie sent me a box set of Philippa Gregory books. I also like returning to young adult novels because they’re quick reads and sometimes more uncomplicated.
It’s Because Love Big Hug Blanket and Love Heals journal. What is a blanket doing on this list? This blanket comes with tags that the patient’s friends and family can write on or decorate. It gives them something to read when snuggling up at home or in an infusion chair. They also have an amazing Love Heals Journal, which you can fill with messages of love and support for the patient to read.
Personal letters, poems, etc. to read when needed. I have so many cards on my fridge or in a box that I open when I need some extra love. Taking a few minutes to put pen to paper gives the recipient something to treasure forever.
Jar of positive messages/quotes. This is an idea from a cancer friend. You can write or print messages or quotes on slips of paper, then put them in a jar. You can even get crafty with the jar and decorate it. This would make the perfect gift for someone who is in-patient, because it brightens up their room and reminds them they’re loved.

CAREGIVER LIST

*Do not forget the caregivers. They have a thankless job and need their own care, too.

Lend a hand. Offer to babysit. Take care of the leaves in their yard or snow in their driveway. Ask if they would like a meal train set up, or drop off dinner.
There Is No Good Card for This by Emily McDowell and Dr. Kelsey Crowe. This book provides amazing advice on how to empathize with a patient. I recommend you read it first, and then pass it along to the caregiver, who can then pass it on to any relatives who need a primer in what not to say.
Immune support products. Emergen-C packets, hand sanitizer, tissues are all great because the caregiver needs to stay healthy despite their challenges.
Gift cards for coffee. Caffeine is the unsung hero of the cancer experience.
Hire a cleaning service. My friends gifted me with this and let me tell you, my apartment has never been cleaner. My tired self was so relieved to lay on the couch without looking at dust.
Cancer Cookbooks. The two I love are The Living Kitchen and Cancer Fighting Kitchen. Both come with great recommendations for recipes that help with side effects. They also suggest how to change the taste of meals if the patient’s sense of taste is altered, which is really common.

VIRTUAL GATHERINGS

If you want to celebrate the patient, or just show them some extra love, ask if they’d like a virtual gathering. Ask the patient to choose the date, and offer them a solid out: if they’re not up for it, let them know there’s no problem and you’re happy to reschedule.

Christmas Celebration. One of the most meaningful gifts I’ve ever received were boxes of Christmas decorations and cash to buy a Christmas tree. I just had surgery and I was exasperated, bouncing from doctor to doctor, and broke. I still get misty eyed when I take those boxes downstairs and hang them, knowing what love was put into the gift. If it’s not December, who cares! Throw a Christmas in July gathering. Drop off ingredients for frozen hot chocolate and wear red and green on the call.
Wig Party. If the patient has recently lost their hair, consider throwing a wig party. Buy a look from amazon and show up on the call looking like Sydney Bristow from Alias. Consider naming the wigs and coming up with silly alter egos.
Pajama Party. Ask everyone to show up in their pajamas! You can remind everyone how to play MASH, play music so folks can dance and sing into a hairbrush if they wish, or maybe even a fun remote game of truth or dare. There’s nothing that quite compares to reliving your childhood memories.
Movie Night. This got me through my year of infusions last year. With a program like Netflix Party or Disney+’s GroupWatch, you can all watch a movie synchronously. I sometimes prefer the old fashioned way: hit play at the same time! It’s even more fun when you text your way through it. For bonus points, make sure everyone has popcorn.
Game Night. JackBox games are especially fun to play. All you need is Zoom and a Party Pack to host!

IN CONCLUSION

It can feel daunting to know what a cancer patient would like to receive. It is especially nerve-wracking when you’re afraid of buying or saying the wrong thing. My suggestion is to just be honest! Say things like, “I’d love to buy you something that makes you feel special or makes your life easier. Here are some things I’m thinking about. Do any of these sound like something you’d like?”

At the end of the day, know that your kindness and generosity will go a long way.

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.

experience, guidance, humor

Postcards from the Edge: Medical Phone Calls Edition

January 8, 2020January 8, 2020 ckosyla

My friends,

This is my gift to you, written from the brink of insanity. (New year, new deductible, am I right?) This missive was crafted with love and perhaps a touch of sarcasm, but not that much. Laugh if you will, but take its lessons to heart.

– CK

Christina’s Guide to Not Losing Your Ever Loving Mind
Part 1: Making Insurance, Prescription, and Medical Phone Calls

elijah-o-donnell-t8T_yUgCKSM-unsplash

Photo by Elijah O’Donnell on Unsplash

1. CALL EARLY. This is like tackling crowds at Disney World, but with no joy or fastpasses. If you show up at the same time as everyone else, you will wait in line for four hours, will not get to ride Peter Pan’s Flight, and your party will desert you. Consider off-peak times: find coverage for your desk, use your PTO, or arrange for a babysitter for your children. Accept now that this is unfair and that you have no control over the process. It will save you grief later.

2. PREPARE YOURSELF. Charge your cell phone, regardless of whether or not you are calling from a landline. Keep your external battery close. Assemble all possible phone numbers, mailing addresses, and social security numbers for all parties involved. Gather non-perishables. If you’re treating this like a natural disaster, you’re doing it right. Keep google nearby if they ask for the name of your oncologist’s maternal grandmother, which they will. Make sure you have the ability to make notes. Keep extra pens and pencils on you like you’re taking the SATs. You may not get up from your chair, which leads us to number 3.

3. USE THE BATHROOM. I cannot stress this enough. When you finally get a human being on the line, you do not want to be stuck needing to pee from the cups of coffee you’ve consumed to keep yourself mentally competent.

4. STEP INTO THE OFFICE. If you have the ability, get yourself as relaxed as possible. Climb into the bathtub- no one can see you! At the very least, make yourself a warm beverage to keep yourself tethered to reality. If you’re so inclined, light a candle in honor of St. Monica of Hippo, the Patron Saint of Patience.

5. DIAL THAT NUMBER. Since you already have your member ID number, mailing address, and your second-grade teacher’s name as a security question, you’re ready to go! Dial that number, and make note of the automated menu so you can more quickly access someone in the future.

6. MUTE IS YOUR FRIEND. Place the call on speaker, and then on mute. That way you can hear their annoying hold music, looped over in 30-second increments, but they cannot hear you curse the day private insurance was crafted. Also, remember when I instructed you to go to the bathroom? It’s been three hours and now that you’ve finished that hot beverage, you’ll need to go again. Keep that mute on.

7. START A NEW HOBBY. You’re going to be on hold for a long time. Now is the moment to start that new hobby. Crochet? That blanket will be done before they can connect you through to the proper department, rest assured. In Malcolm Gladwell’s book Outliers, he posits that it takes 10,000 hours to perfect a skill. You’ll be playing the cello like Yo-Yo Ma if you start now. It will also feel slightly subversive and sneaky because they don’t own you. Keep fighting the man, even if it’s with knitting needles in hand.

8. TAKE NOTES. Ask the names of every person you speak to and WRITE THEM DOWN. That way you can specifically reference Sandra in Billing and Matthew in Appeals when you fall to your knees and shake your fist at the sky hours later. Make sure you also note your case number so people know this is not your first rodeo. Ask for direct numbers to specific departments so you don’t have to jump through hoops set aflame by red tape like a circus poodle. Trust me: you do not want to end up at the main menu again.

9. PERFORM A RITUAL SACRIFICE. Put down that knife – no need to get Old Testament about this, Abraham. (You did arrange for that babysitter, right?) You may have already completed this step by using your hard-earned paid time off. Be prepared to prove your devotion once more. Have your credit card ready: they will charge you for medical records. Keep tissues close, in case your tears magically hold any value to anyone you speak with. If they are proven of worth, KEEP THEM COMING. Sacrifice that onion in the back of your crisper drawer and weep like you are at your dictator’s funeral and under threat of capital punishment if your grief is not visibly and audibly quantifiable.

10. COMMENCE SURVIVORSHIP. Wipe the blood from your (hopefully metaphorical) blade. You’ve done it. You’ve survived to see another day, pay another deductible, and wage another war. Celebrate by raising a glass to the fallen or watching an episode of The Golden Girls.

EXTRA CREDIT: Buy a fax machine from Facebook Marketplace. You will likely skip steps 6-9.

EXTRA EXTRA CREDIT: Consider applying for medical school so you can go off-grid in New Mexico and provide your own care.

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

experience, treatment

Unspoken: Part 1.

May 1, 2019May 1, 2019 ckosyla

This post is the first in the series I am writing on the subject of chemotherapy and fertility. It has taken me the most time, intentionality, and courage of anything I have written to date.

As always, the experiences and opinions voiced in this article are mine. My story is not the story of all women, but a tiny piece in the large mosaic of the complex issue of fertility. I wrote honestly and openly – mostly because I wish I had the opportunity to read another patient’s account regarding fertility treatment. The intent of this post is not to overshare, nor is it to cast judgment on others who would, or have made, different decisions. I believe that every person deserves the right to make informed choices about their bodies, and that includes reproductive health.

Last week was Infertility Awareness week in the United States. 1 in 4 men and women struggle with infertility. I believe that the more we share our truths about the complex issue that is fertility, we can help mitigate the stigma and end the cycle of isolation, shame, and grief that is so often at the center of fertility struggles.

crisis — *Image of the sign borrowed from ABC20.*

There’s a small sign that hangs in my office at school that my coworker was gifted years ago. It reads, “just take it one gigantic, earth-shattering crisis at a time.” I love that sign. It’s honest, isn’t it? Because life doesn’t usually hand us challenges in neat packages. Instead, you get something akin to those Russian nesting dolls. You think you’ve tackled your problems, but as you unpack it and delve deeper, you reveal more and more than you saw upon first sight.

In the middle of March, I was prepared for the start of IV chemo. What I didn’t expect was the life-changing decision I’d have to make before it even began.

The day I agreed to start Doxorubicin is a bit of a blur. Thankfully, I had done my homework on the drug, so as my oncologist rolled through the list of side effects during our appointment, I simply nodded in understanding. I knew that fatigue was the biggest side effect, as well as hand and food syndrome, lack of appetite, nausea, and mouth sores. Check, check, check, check, and check.

I paused when he mentioned there were other, less common side effects that I’d need to sign off on. I was handed a plastic electronic pen with which to sign a consent form. This digital consent form was my acknowledgment that, among other things, there is a small but real chance that my monthly infusions could leave me with leukemia, send me into early menopause, or eliminate my fertility. My oncologist recommended in the next breath that I set up an appointment for a fertility consultation. A nurse from the sarcoma program would coordinate with the fertility office and call me to schedule.

I took a deep breath. I signed.

The next day, while in a tech rehearsal for the musical I was choreographing, I received a phone call from the nurse. The fertility clinic couldn’t see me until April, which would be pointless, as any fertility treatments needed to conclude prior to the start of my treatments. Luckily, there was likely to be a cancellation the next day so I could be seen- provided I could call and confirm in the next fifteen minutes before the end of business hours. I did, sent a text to my mom asking her to accompany me the next day, and quickly shot off a flurry of emails to find a sub for my classes.

As rehearsal continued, I sat and struggled to make sense of what just happened. I googled the cost of egg freezing, the process through which my future fertility would be more possibly secured. I tore through the desmoid tumor patient facebook group, searching for the terms fertility and egg freezing. I got a vague understanding that this consultation would need to be the start of a much longer, much more involved process than I had anticipated. The weight of this decision slowly settled in.

While this may seem like a cut and dry decision of whether or not to freeze my eggs, there’s something you need to understand about desmoid tumors. Scientists have no idea what causes them, but there is some evidence to suggest that they’re hormonally driven. My own tumor tested positive for estrogen receptors, which indicates that any change or increase in hormonal activity gives the tumor a chance to grow. It’s a common subject of discussion on the desmoid facebook group. Many women shared that their tumor grew exponentially during pregnancy, presumably both from the change in hormones and the inability to treat the tumor while carrying a baby. An article was just published on March 20 of this year with the partial title “Bedouin woman with a dormant neck nodule that grew explosively during her pregnancy.” And while the risk of infertility after this round of chemo was small, I already had this rare disease, this one in a million tumor. A 1% chance of something going wrong had already proven itself 100% possible.

Was I willing to freeze these eggs if even carrying a pregnancy would be that risky? Every woman whose tumor had grown said they wouldn’t change a thing because it meant they had their beautiful baby, but I couldn’t imagine needing to undergo more intense treatment immediately after giving birth to a child. Surrogacy was another option if I wanted a biological child, but with a teacher’s salary, the $70,000 – $100,000 price tag seemed unattainable, especially when adoption was something I would be willing to consider. And then the deeper question: was motherhood something I even wanted? I never had that deep, unflinching “yes, absolutely” when asked if I wanted kids someday that so many people I know carried with them, as certain as their own name. I didn’t worry too much about it, especially since I wasn’t in a relationship, and I was 29. Wasn’t there time to think this all through?

It turns out, I had even less time than I thought. Treatments take several weeks. I would need to begin immediately.

I had 19 hours to make a decision on whether or not I wanted a biological child, and if so, how much I was willing to pay for it. Because while it was a side effect of my necessary chemotherapy treatment, insurance wouldn’t cover a dime.

With exasperation and fury, I remarked to someone that it felt like a bad crossover season of The Handmaid’s Tale and 24. I could barely see past the start date for chemo. How on earth was I supposed to make a level-headed decision about the rest of my life? I paced back and forth across my living room floor, unable to sit down, frantically searching for the right decision.

This is the unspoken battle of any life-altering diagnosis: it robs you completely and utterly of any sense of security. I cried more in those 19 hours than I had in the year since my diagnosis. Grief is not relegated to death, at its core, it is the deep and painful acknowledgment of loss. At 29, I was grieving the loss of a life I thought I would have all over again. Any sense of freedom is derived from having agency and choice, and I was watching my choices disappear behind variables, side effects, life events I couldn’t predict, and dollar signs. I wondered how much more my heart could continue to break and repair itself.

To be continued.

Christina’s Guide to Not Losing Your Ever Loving Mind Part 1: Making Insurance, Prescription, and Medical Phone Calls

Christina’s Guide to Not Losing Your Ever Loving Mind
Part 1: Making Insurance, Prescription, and Medical Phone Calls