We could all use some good news- luckily enough, I’ve got some to share!
My tumor is still shrinking, ever so slightly! After a year of Doxil infusions, it’s just under 2 cm smaller. I’ll take it!
*WHILE I HAVE YOUR ATTENTION*
The drug that made this possible is the same drug that makes me immunocompromised. I know what you’re thinking! “But she looks great! Gosh, she’s beautiful! Stunning! Ravishing!” (Aww, shucks! You’re too kind.) Appearances aside, my white blood cell count is below normal range.
So when events are cancelled, or you’re told to wash your hands in excess of 1,500 times while singing your song of choice, remember that COVID-19 precautions are not necessarily about the healthy in our communities. It’s for people like me who were *already* at risk of contracting Lord-knows-what-else. If someone you love is elderly, pregnant, or undergoing chemo, you owe it to them to respect the recommendations of medical experts.
And if you don’t love someone with those conditions, you should STILL be a decent human being and comply! Wash your hands. Disinfect your cell phone. Stay home whenever possible. Order in from a Chinese food restaurant whose business has probably suffered prejudice from the ignorant. Greet people with jazz hands! (I’ve been waiting for this opportunity in particular my whole life.)
You likely come in contact with dozens of immunocompromised people every day without realizing it. Help us, and our terrified white blood cells, stay safe.
Thank you for coming to my guerrilla-style, sanitized TED talk. Be well, my friends!
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.
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.
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 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.
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.
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.
Christina’s Guide to Not Losing Your Ever Loving Mind
Part 1: Making Insurance, Prescription, and Medical Phone Calls
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.
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
7 prescriptions for chemo side effects
2 surgical consultations
1.4 cm of shrinkage
1 tumor, measuring in at 4.9 cm by 10.9 cm by 8.2 cm.
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.
I had my eighth round of chemo yesterday. It’s a curious thing: I could be one away from being done, or I could have five more to go. It’s anyone’s guess.
Since the beginning of April, I’ve been out on disability from work. It’s been great to rest, and I know there’s no way I could be the teacher I want to be while on doxil. It’s also incredibly isolating, quiet, and full of different kinds of grief. While the world outside continues, I’m here.
I want to share that today, but not to evoke pity. If you’ll allow me, I’d simply like to tell you a story.
A History Lesson
I once had the great fortune to visit Prague. It was a city that I chose with a few friends at the time because it was affordable. We were studying abroad in London with a month or so under our belts, and with two more to go, we were feeling the sting of the exchange rate. My Europe on a Shoestring guidebook by Lonely Planet raved about Prague, and it had never before steered me wrong. So, like only four 20-year-old college students can, off we went.
I didn’t expect to be so taken by this city that held no prior emotional, whimsical, or cultural significance in my life. I have no Czech heritage, never daydreamed about walking its streets, and it was only the night before we left that I thought to google some simple phrases, like “hello,” “goodbye,” or “one beer, please.”
Prague, the destination that was chosen by my wallet became one that won my heart. The St. Vitus Cathedral was one of the most beautiful, warm traditional places of worship I’d ever seen. There was the Cross Club, a mind-bender of a nightclub made of found objects like bicycle parts, train cars, and computer hardware. And then there is smažený sýr, one of the most indulgent food trunk specialties one could ever hope to encounter. Basically a gigantic puck of a mozzarella stick, it’s served on a hamburger bun with a specialty sauce and is the perfect food to round out an evening of adventure. Next to hearing the Czech Philharmonic and seeing The Marriage of Figaro at the only remaining opera house where Mozart himself conducted – smažený sýr was the peak cultural experience I had.
On one of our first days, we arranged to take a free walking tour of the city, where the tour guide walked us to many of the city’s most beautiful and celebrated monuments, like the Astronomical Clock. The tour guide addressed what so many of us had been wondering: if so many great minds flocked here en mass at one point, why didn’t we know about Prague in 2009? Why did this artistic and philosophical center, this “Paris of Eastern Europe” stop its growth spurt? I’d come to find the answer was fairly obvious and could have been answered by the slightly outdated map in the back of my elementary Social Studies textbook: communism.
Before the Velvet Revolution in 1989, and the separation of the Czech Republic and the Slovak Republic in 1993, Prague was part of Czechoslovakia. So for 45 years – from a coup in 1948 until democracy in 1993 – the country was ruled by a single ruling party. (Keep in mind that prior to that, it weathered Nazi occupation in WWII, and nearly a million and a half Czechs fought in WWI before that.) While the rest of Western Europe went on to rebuild after two devastating wars, Czechoslovakia couldn’t. It stifled by the limitations of Communism.*
*I feel it necessary to interject that these thoughts are mostly from our tour guide, and these facts are mostly from Wikipedia. Comrade I am not, but I do find capitalism to have its evils. I digress.
As the rest of the world tried to make sense of the wars it had waged, had a baby boom, and struggled to start life again – Czechoslovakia remained under a bell jar. Life continued, of course, but it was vastly different. Free speech, even in one’s own home, was a pipe dream, as the government frequently planted bugs in private residences. Authors had their works banned if they did not conform to party ideals. Actors and directors were not permitted to participate in productions. The spirited debates and artistic expression which were the mainstays of Prague cafes, stages, and opera houses became stale with the same message over and over, for the benefit of the party. It’s hard to fully communicate the mark left by Communism on the Czech.
In an effort to bear witness to this part of its history to future generations and visitors, Prague has many statutes in commemoration of different aspects of the Communist era. There’s the Memorial to the Victims of Communism, a series of bronze human sculptures on descending stairs that appear to wither away before your eyes. A plague shares the rough estimates of the total number of victims: “205,486 arrested, 170,938 forced into exile 4,500 died in prison, 327 shot trying to escape, 248 executed.” A smaller sign nearby states: “The memorial to the victims of communism is dedicated to all victims not only those who were jailed or executed but also those whose lives were ruined by totalitarian despotism.”
And then there’s another monument, on the top of a hill. It was erected in 1991 in the same spot where a monument to Joseph Stalin once stood. It’s a 75 foot tall metronome.
When democracy was finally restored, there was much work to be done. And the people not only wanted to build a monument to victims who were killed, but that one great equalizer: time.
Blessed are those who ‘still aren’t over it yet.’
– Benediction at the memorial for writer Rachel Held Evans
Time soldiers ever on, insistent, indifferent. It does not waver from its measured march, regardless of our crippling anxieties or exhilarating anticipations. Though we may interpret its constancy in relation to our own hearts, so much so that we believe our own measure to be steadfast, time is not elastic. It is concrete.
If there were ever a monument built to honor cancer patients, I would vote for a metronome in the style of the Czech.
The Czech citizens in charge of making that statue possible understood that those still living carried a grief of their own. As one of my favorite sayings in the AYA community goes, “survival is insufficient.” It is so, so necessary to remember the many folks we’ve lost to cancer. It is also necessary to remember those who are still here, trying to make sense of things.
Time is a struggle these days. I see strangers and friends who are dating, getting married, buying homes, going on exotic vacations, starting new careers, or having children, and when I do, I am completely and totally envious. I truly believe that no one person is without their struggles, public or private.
If I’m honest with myself, I know that I am not envious of their lives and successes. What I am desperately, agonizingly, painfully envious of is what my life could have been.
Had I never been diagnosed, I may not have found a partner by now, saved enough money for a home, or decided to have children. But the trajectory I was on was pretty damn good. Even if everything had remained exactly the same, more of that would have been better than what came next. That would have been enough. I was so deeply, truly happy. I was really, vibrantly healthy. The glow of health alone is so bright, truly, I am blinded from even remembering what my trivial problems were back then.
There was a Netflix series I watched for a while, and before it went down the drain in both quality and production, it explored the idea of multiple, real selves in parallel universes. It examined the idea that somewhere, there is a universe where you made a right instead of a left, taken that job you ultimately turned down, pursued that secret passion, and there’s a version of you that is still you, but living in a different reality.
Somewhere, at least in my brain, I can imagine a Christina who has never heard of a desmoid tumor. It’s like imagining Barbie in her Dreamhouse. She came back from walking the Camino, had a lipoma removed, and went back to work. She is living on her own in the apartment she worked so hard to afford, has the career she worked so hard to advance and is hyped on her own independence and good fortune. She makes time for adventures in other states and countries or in imagined worlds. She sings and dances on stage knowing only the faintest whisper of what despair can be.
That’s not the universe I’m in. And here, time ticks on.
As I try to simply put one foot in front of the other, matching its tempo, I wonder who I might be once the bell jar is lifted. And as I wait and hope for a chance to rebuild, I’m building my own monument, my writing, for people to see.
I didn’t tell many people I was getting a scan last Saturday. I felt like a broken record, always delivering the same news. As heartbreaking as it is to receive bad news, I always find it harder to share it. I wanted better results, and I knew how badly the people I love wanted them for me.
Which is why I am so, so very glad I don’t have to give you bad news today.
My tumor has begun to shrink.
It took 18 months since starting treatment, two types of oral chemo, and six rounds of IV chemo, but this thing is slowly responding.
Here’s the details: it shrunk .6 cm in one direction. It grew .1 cm in another and shrunk .1 cm in a third, so overall a net change of -.6 cm.
It is a small change and I don’t care. It’s the most measurable response I’ve ever seen! As one of my friends put it, it can’t shrink three inches if it doesn’t shrink .6 cm. Here’s the best part: I was told at my second opinion earlier this year that the hardest thing about desmoids is often breaking the pattern of growth/stability and getting them to start shrinking. Once they make that switch, some patients can eventually even come off treatment and continue to watch their tumors decrease in size. There is a lot of reason for me to feel hopeful about the direction my tumor’s taking.
When you have a disease like mine, it’s so hard not to look around you and wonder why you’re suffering while someone else is healthy, or why someone else didn’t make it and you’re still here. There’s a lot of searching for reasons. I don’t have any answers. I’m still a cancer patient, and I’m still in active treatment. I have an unknown number of rounds ahead of me. But the hope that this moment has gifted me is immeasurable. I finally know change is possible, and that’s victory enough for me. I’m going to revel in it for as long as I can, even if I don’t know why.
(But also, no one can prove that it *wasn’t* the fact that I listened to the Spice Girls in the MRI machine. You can bet I’ll be spicing up the life of my radiologist in three more months when I go back for another scan.)
Thank you so much for continuing to read along. I am so grateful for your love, prayers, and prayers, through thick and thin!
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
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.
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.
Several weeks ago, I went to see one of my favorite people, Glennon Doyle, speak about her life and career. Glennon is an author, activist, and the founder of Together Rising, an incredible non-profit which rushes in to help people in crisis. The house lights were nearly off in the theater, but I wasn’t going to miss my chance to take notes, so I scribbled in the dark with my notebook practically held up to my chin. One of the moments that will stick with me for a long time is when Glennon explained that she is asked, all the time, how to find peace and happiness. Her response is one of the best pieces of advice I’ve ever heard. She said (and I’m paraphrasing from my notes, which are a little bit on top of each other, so forgive me):
Peace and happiness? I don’t know what peace and happiness even means! I don’t know how to find them! But I do know how to find your purpose. Don’t ask me what brings you happiness. Ask yourself what breaks your heart. Be brave enough to go there. Rush to the places that break your heart. Stand there. You will find your people.
There are so many heartbreaking things in our messy, beautiful, broken world. There are so many places to rush to. But right now, this tumor’s breaking my heart… a lot. And the Desmoid Tumor Research Foundation has been the place I have rushed to, since the night I was officially diagnosed, to find others whose hearts are broken by this disease too.
Running for Answers 5k
This year will be the 10th Annual Running for Answers 5k in Philadelphia. Last year was my first year participating, and it was a blast. While this event may have been born of heartache and frustration, it has become a celebration of community, strength, and resilience. This event is one big morning-long party, and I like to think the presence of the Unicorn Squad has a lot to do with it! Last year, we were the team with the highest online fundraising amount- which was super exciting! I was the featured speaker, and once those duties concluded, I walked the route and ate ice cream. Then I basked in the glow of how lucky I am to be so supported.
If you missed out on the fun last year, here’s your chance to join the Squad this year! The 10th Annual Running for Answers 5k Run/Walk will be September 22, 2019 in Fairmount Park. For $35 you get race registration, music, free cheesesteaks, free ice cream, post-race yoga, and word on the street is that the first 400 registrants get a cool bandana as well. And if you register by tomorrow, August 15, you get a free Unicorn Squad tshirt as well! (I know, ack, this is late notice – I could have sworn I shared about it earlier. Sorry! Chemo brain! But if you register after August 15, you’ll still get all the cool perks, just no tshirt.)
Summary: $35 donation. September 22. Music. Walking. Running. Hug from me. Food. Massive fiesta feeling. My eternal gratitude.
Want in? Click here to register and join Team Unicorn Squad!
Q: Rats! I don’t know if I can make it that day! What can I do? A: You’re still welcome to register by tomorrow, 8/15, if you want the tshirt! Your $35 registration fee will go right to the DTRF, and I’ll get in touch with you to give you the shirt at another time. If can’t register until the day before, that’s cool too! You’re always welcome to join!
Q: I can’t make it, but I would love to make a donation. Where do I do that? A: Thank you so much! You can click on this link and make a donation by clicking on the “donate” button, under the image of the colorful unicorn.
Q: Unless I’m being chased by a rabid animal, I don’t run. Can I still register? A; Absolutely! I walked last year. There’s always a solid contingent of walkers.
Q: I am a Very Serious Runner. Can I register?
A: Of course! This is a timed course and there are prizes in each age group as well.
Q: This is not a question. But my child is the next Wilma Rudolph.
A: Wow! That’s impressive! You should register your kid – there’s a 1/2 mile fun run they can participate in right before the 5k kick-off!
Q: Can I bring my human baby and/or my fur baby? A: For sure! The course is paved and stroller-friendly. If your kiddo is of the four-legged variety, bring them on a leash!
Q: I have a question that’s not listed here!
A: You can probably find the answer on this Event Details website. You can also message me here on the blog!
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.
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 islike 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.