In truth, I thought I’d have good news to share by now. A few things have been in the works for months. And so I have waited, like a child peeking around the corner, hoping to bring you something thoughtful and handmade to show off my craftiness, my perseverance, how hard I’ve worked.
Instead, I’m coming to you now with empty hands. Hands that are a bit unsteady, nails certainly unpolished, perhaps a bit embarrassed with nothing to show for myself.
Even without news, a lot has changed.
While I won’t get into the details, I will share that I’ve lost something that was a huge part of my life and was even before cancer. This seismic shift went unacknowledged by most others involved, leaving me to wonder if it really unraveled the way I experienced it. It reminds me of the TS Eliot poem: not with a bang, but with a whimper. But I was there. Others may have been left unscathed, but I am not.
What should have been a relatively insignificant event also became really impactful this week: I had a haircut. What I failed to realize is how oddly my hair had grown in after going white from Votrient. Different spots on my head grew in at different rates. Before I knew it, the inches of growth I fought so hard for were falling around me in piles. What remained was a buzzcut to make it all even.
Hair is so critical to our identities, and what hurt most is that I wasn’t expecting it. My natural color is back in full force for the first time since I was 17, a time when I was painfully awkward and unsure of myself, desperately waiting for my life to start. It felt full circle: here I am, over a decade later, feeling the same uncomfortable things all over again. So I did what I do best: I cried for two days. I let myself feel sad and awkward and seventeen and angsty. Then I ordered a wig and had a dear friend help me style it until I felt comfortable. The wig has been a huge blessing. It’s helped me regain my confidence, feel relatively normal, and stopped people from staring at me as I walked my dog. (I’ll try to give them the benefit of the doubt: maybe they didn’t recognize me. But the heat of a stare in a small town will make the hair on your neck stand up, I’ll tell you that.)
Why type away while I have seemingly nothing to really report? Well, one, to tell you I’m still here. (Which, I suppose, is always worth mentioning when the majority of your writing is about your health.) Two, to share that sometimes cancer is about waiting and patience. It’s neither the incredible celebration or the devastating scan result: it just is. More than anything, I write because of a sentiment Elizabeth Gilbert shared in an interview with the Good Life Project podcast:
“I like learning in public and growing in public, because I think that it’s a service. Because the people who are kind enough to learn in public in front of me have helped me enormously to change my own life. The turn around time for how long is between when I have a revelation or an epiphany and I want to share it can be anywhere from a few minutes to a few days, but it’s there and if I don’t share it, it feels burdensome on me. I think in the same way in the same way any talent you have that you don’t use becomes a burden, any information that you have about how you survive this journey on Earth that you don’t share is a burden. It’s a burden on you, because it’s meant to be out there.”
I won’t fool myself into believing I’m sharing things worthy of the words revelation or epiphany. But I am, truly, hoping that these words can be a field guild for someone else. At the very least, maybe I can or validate someone else’s grief at their loss of identity, or crying over their hair, or agonizing over the need to wait.
And in the meantime, I’ll be waiting here with my empty hands, hoping and trusting beyond reason that someday soon, they’ll be filled.
I remarked to someone back in June that if I were offered a pill that would allow me to fall asleep and wake up in 2021, I’d do it.
I stand by that decision, here in late September, and would probably still take that pill today. But maybe I shouldn’t rush to judgement. I would miss moments like yesterday.
A few weeks ago, I was given the go-ahead by my oncologist to attend appointments I’d postponed in the Spring, the usual things like the dentist or a check up that can’t be accomplished via telemedicine. I went to see one of my favorite practitioners. I only see her about once a year, but she has the way of making me feel so comfortable in her presence. Either she has a spectacular memory or takes really good appointment notes- regardless, she always seems to remember me and ask me about specific details of my life.
She walked in yesterday to my appointment, masked but still bearing the hallmarks of a smile in the crinkle in her eyes. She immediately commented on my hair and how much she loves it. When I told her the whole story- drug side effect, etc. – she leaned in closer to part my hair with her fingers, like you’d play with a friend’s hair.
“And how are you doing?” she asked.
“I’m okay.” I replied.
Furrowing her brow, she lowers her chin and looks at me more intently. “Just okay?”
I was open but brief about some of the chaos swirling in my mind, in particular, how the pandemic has exacerbated it all. How careful I’ve needed to be. How it’s been six and a half months with just being poked and prodded by doctors, no real spirit-affirming human touch. She is present the whole time. Listens, looks me in the eyes, shares her care and empathy with me. The appointment gets under way. Before I know it, she’s telling me something about her dog and her husband and we’re both belly laughing.
We wrap things up and she goes to the door to leave. I thank her, and with no warning she pulls me into a tight hug. I managed to choke out an, “oh, thank you,” and I take a deep breath. “One of my first hugs since March,” I manage. She squeezes me tighter. Her sweater is warm and soft, her tiny frame unexpectedly powerful. We smile at each other as she leaves. As soon as the door clicks behind her, I burst into tears.
The only quarantine hug I’d had prior was a surprise hug in August from my best friend’s daughter. We were eating brunch outside on her lawn, when without warning, her three year old enthusiasm could not be contained. With lightning speed, she rolled over the grass several times onto my picnic blanket, and wrapped her tiny arms around my lap. Knowing how careful I’d been, my best friend looked at me in horror. In an opposing response, I felt my body soften. This hug, so unbridled and joyful, sent waves of calm through my body as I tossed back my head and felt a laugh escape. I rubbed her back and looked into her smiling face. I assured both of them it was ok, it was a special treat. This hug from my doctor felt the same. I could sense the impulsive quality in her embrace, the insistence that this was the only right thing to do.
I am absolutely sure that I would have refused the offer of a hug yesterday, just as I would have cautioned my best friend’s beloved enthusiastic toddler. But once it was underway, I during I didn’t think of risk. I didn’t think of particles or statistics. I didn’t even hold my breath. I deeply inhaled and exhaled. Most assuredly for the only two times in about 200 days, I let myself soften.
Back in the exam room, I pulled myself together. I wiped my eyes with a tissue, readjusted my mask. As I walked down the hallway towards the exit, I heard my doctor with her next patient, laughter just dancing on out through the bottom of the door. What a remarkable thing, I think, to know where your doctor is by the sound of joy she creates in her presence.
Medicine is hard. Being a doctor is hard. Being a patient is hard. Being a human is hard.
Ten, twenty, thirty years from now, I will remember that moment when my doctor saw me not as a patient, but as a person. And it is my hope that when I can safely hug people again- with reckless abandon- I can convey the expansive compassion that was shared with me in that one moment of humanity.
I agonized over this decision for weeks. Since May, Votrient had made my hair grow in with a lack of pigment, and that meant that it wouldn’t take any dye (I tried.) It felt sad and limiting to cover my hair up all the time with the same two headbands that were comfortable enough and felt fashionable. My scalp began to hurt more and more. The initial sting of my realization had settled into a dull ache, one I was reminded of each morning as I got ready for my day. Why was this sitting so heavy on me? What was the real issue here?
I sat down to journal and get to the bottom of it.
Here’s what I found: I was afraid simply because it was something I’d never done before, and I had few examples of what that would look or feel like. And beneath that, I was tired of needing to be brave all the time and constantly fighting to meet other people’s expectations.
The words that came to me (truly, that sounds like something out of the Old Testament, but it’s the only way I can describe it) were these: you don’t have to be brave enough for all of it. You just have to be brave enough to do this one thing. The rest can wait.
I knew I was brave enough for this.
I picked the night of the full moon at the beginning of August, since it traditionally represents letting go. I watched Sweeney Todd the night before for a bit of wry humor. I put a few woo-woo earthy items in the beautiful wooden bowl a friend made me: safe, aquamarine, obsidian, and cowry shells. All these were suggested in an episode of Queer Eye when a man was shaving his dreads. (And if it’s good enough for JVN, it’s good enough for me.) My friends Dominique and Dave sent me a pair of clippers from amazon, which I affectionately named Greased Lightning due to the lightning print on the side. I called my friend Alex for moral support. I sectioned my hair into ponytails. When it came time to the cutting itself, I put on Aretha Franklin and got to work. After the first few big cuts, it became easier. That night, I enjoyed the summer rain on my newly short, 7/8 of an inch hair.
It’s important to acknowledge how lucky I was to make a choice. Most people with cancer don’t. It just starts falling out and then it’s time, or to save the grief later they shave it off before it gets there.
And the story continues. Since I’ve been off of Votrient for my sky-high liver enzymes, my hair has started to grow back my natural color. (Dark brown: which many of you, readers, having seen me grow up, probably already knew!) I’m starting to look like I have weird early 2000’s frosted tips. But I would make this decision again every day of the week and twice on Sunday. That day, I took back my control. I’m reminding myself daily that femininity does not depend on long hair. I’m playing with new hair accessories and enjoying a short prep time in the mornings. I’m feeling like more of a badass, if you’re looking for honesty.
And in 2020, who doesn’t need more of that energy?
The last time I shared an update with you was March 12. I didn’t know then that the day before would be my last normal day for the foreseeable future. I wish I had taken a moment to savor the hugs I gave my aunt and uncle as I left their house. I wish I had enjoyed being mask-less a bit more. The list can go on and on… but what it comes down to is that COVID descended on the East Coast and has yet to ease its grip on our reality.
There are a few markers of time passing. I started a new oral chemo, Votrient. I went back to work via remote learning. I directed and edited two virtual productions. I had another birthday. I was a keynote speaker at CancerCon. I started leading two online summer theatre programs when school ended. I directed and edited another production.
It’s been almost five months. 147 days of worrying about loved ones. 147 days of relying on others for my groceries or food delivery. 147 days of no physical touch with another person, aside from being poked at for an MRI, lab work, and blood tests. 147 days of calculated small risks. 147 days of wondering when it will be okay to ease up a bit. 147 days of a pit in my stomach named Pandemic taking residence next to another fear: Cancer.
These two overwhelming, enormous sources of fear, anxiety, and change reside next to one another. In all these days that the country been watching the maps change color and numbers rise and fall, I’ve also been monitoring my own non-COVID health. After being on Votrient for 16 weeks, my liver enzymes decided to spike quite high. I was taken off of the drug three weeks ago, and they’re still climbing. An ultrasound came back normal, but the cause remains a mystery. I’m trying to figure that out with my care team now.
I don’t have anything new or exciting to say about COVID-19 that hasn’t been said already. But I do want to explain that for those of us who are immunocompromised, we are at once strangely adjusted to this reality of washyourhandswatchforsignsandsymptoms and also purely terrified of it. Just as I was ending my time on disability, COVID came along. I’ve been on some version of high alert since March 28, 2019 when I had my first chemo infusion… really, I never left.
Especially at first, as others were expressing their discomfort and fear, I was a resentful. “Oh, you feel cooped up in your home? Lonely? Separated from others and fearfully protective of your health?” I had been there, done that, and so often felt completely forgotten. With all that still going on, COVID specific fears settled in to say. When I look at back to school plans, I grow sick to my stomach. I struggle when others’ definitions of “being extremely careful” are vastly different than mine. I grow angry at the selfish so-called patriots who see mask wearing as a limitation on their civil liberties instead of a tool to shorten the lives of others. I often feel that I’m spinning plates: got to keep my own personal health plate spinning, and also be vigilant about COVID, and think about being a living breathing human besides all this, lest all three come crashing down.
So while I have nothing new to say about this virus, or this experience really, I do just want to drive home: those of us with chronic health conditions are not new to this. We can be your sherpas in some ways. (We discovered Netflix Watch Party first, for the record.) But for the very same reason of personal experience, COVID is hitting us in profound ways.
Be patient with us. Understand when we say no to arrangements that challenge our comfort levels. Listen to our very real fear and anxiety, without pushing it away with platitudes. Ask how we can still spend time together.
I want to believe that this pandemic is going away sometime soon. I don’t know how true that is. Regardless, let’s practice being human and kind and understanding and generous with one another. We could all use some more of that.
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.