experience, guidance, reflection

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

The Mirror

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Photo by Amine M’Siouri from Pexels

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

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

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

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

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

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

Changing the Conversation

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Photo by Kevin Jesus Horacio on Unsplash

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

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

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

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

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

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

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

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

What’s Working

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

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

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

cupcake

 

experience, reflection, treatment

Three Uncomfortable Truths

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

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

It sucks.

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

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

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

Three Uncomfortable Truths

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

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Image credit.

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

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

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

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

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

2. I do not owe anyone my optimism.

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Image credit.

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. 

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Photo by Heather Zabriskie on Unsplash

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

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

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

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

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

experience, reflection, treatment

Buddhism, Chemo, and Me

buddha-wallpaper

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

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

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

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

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

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

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

An Explanation

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

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

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

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

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

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

experience, treatment

Unspoken: Part 1.

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

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

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


 

crisis
Image of the sign borrowed from ABC20

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

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

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

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

I took a deep breath. I signed.

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

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

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

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

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

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

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

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


To be continued.

experience, guidance

Look Me In the Eye: How To Talk to Someone with Cancer

Have you seen this quote from Brene Brown making the rounds on social media lately?bb.pngAs always, Brene speaks the truth.

As I’ve shared my challenges with friends, family members, and coworkers over the past several weeks, it’s been uncomfortable. No one likes to feel pain, and looking at others in pain can sometimes invite our own right in. Instead, we look away out of fear and discomfort. We resort to platitudes or silence. I understand that impulse. I’ve been there.

A few honest friends have confided in me that they’re worried about saying the wrong thing. I’ve been there, too. I’m positive that when I’ve spoken to people going through challenges I’ve never faced, I’ve said things that were not as helpful, comforting, or meaningful as I intended them to be. Call it “foot-in-mouth” disease or a manifestation of social anxiety – it can be hard to navigate what to say when the people we care about are suffering.

What I want to ask – even challenge you to do – is to do it anyway. When people are struggling and hurting, what gets them through is the feeling that they are not fighting alone.

In that spirit, I’d like to share with you some helpful guidelines on how to speak to someone who is facing cancer. Please note that all of these are guidelines and suggestions from my own experience. Someone else might require or ask something of you that’s not listed here. I also freely acknowledge that I may mess up, as will you. We are allowed. We’re both learning.

If you don’t know what to say, keep it simple: say exactly that.

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French or English will do. Image credit.

“I don’t know what to say, but I am here to listen” is perhaps the most straightforward help you can offer. A cancer patient’s challenges are likely different than your own; news they are processing with might be overwhelming for you to consider. I’ve been told several times, “Wow, I don’t even know what to say.” I have always, always appreciated that simple honesty.

Google it.

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Image credit.

I promise, I’m not trying to be smart-alecky. This is something I’ve done countless times when friends have faced miscarriages, child loss, loss of a spouse, or divorce… you name it. I was terrified of screwing it up, so I sought advice.

There are a lot of great resources out there on how to talk to and be supportive of someone with cancer. Here are a few I like:
How Can I Help? – Shameless self-plug. This is one of my old posts, so it’s already me-approved.
10 Tips for Supporting a Friend with Cancer – from Memorial Sloan Kettering.
Cancer Etiquette – from the Cancer Treatment Center of America.
5 Ways to Support a Friend with Cancer – From the Patient’s Playbook.

Try not to start any sentence with “at least.”

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Image credit.

I will continue to share this video on empathy until everyone in America has seen it. If you have not seen it, stop what you’re doing and watch it now. I’ll still be here.

Saying “at least” is something we are all programmed to do. We like finding a silver lining or want to comfort a person we don’t want to see in pain. I am sure that I have said “at least” when talking to others about their own struggles; I am learning and actively working on correcting it myself.

Here’s why these words, while well-intentioned, can do a lot of damage: it is a daunting task for me to share candidly and allow myself to be vulnerable. When I do open myself up about my emotional messiness and others advise me to see the positive, it sends me into a shame spiral. I feel guilty that I can’t just be happy. I feel ill-equipped to handle my daily life. I shut down and feel like I shouldn’t have shared at all. This doesn’t help anyone and has the opposite of the intended effect.

As I wrote in a post back in March of 2018, “People say things which unintentionally minimize my struggle. ‘Look on the bright side!’ kind of comments or comparing suffering is not always helpful, even when well-intentioned. Yes, I sometimes make ‘it can always be worse’ comments because some days that’s where I am. But on the days when my fingers feel like they’ve been shut in a car door or I have no appetite and the thought of eating anything makes me sick, I’m not interested in the bright side.”

What can you do instead? Be vulnerable, too. Sit with the person in the discomfort and the pain without trying to mitigate it. You can’t change the challenges they’re facing, but you will certainly help them feel supported as they face them. When someone allows themselves to be present through the bad and the ugly, we all feel less alone.

Mirror the other person’s language.

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Image credit.

If they say “I’m so disappointed,” you can respond “I’m so sorry you’re disappointed.” If that person says, “it’s so hard,” you can say, “that must be so challenging.” It sounds crazy, but it lets the person know you’re listening and their feelings are legitimate. Often times, patients aren’t seeking advice, they just need someone to listen. Everyone deserves to know that their feelings and experiences are valid. Mirroring their language is one way to let them know they are seen and you are there for them.

Send a card instead.

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One of Emily McDowell’s amazing cards.

If you need some time to prepare what you want to say, send a card. Emily McDowell is a wonderful artist whose cards are honest and say exactly the kinds of things patients want to hear. They’re heartfelt and sometimes funny, such as:

“There is no good cards for this. I’m so sorry.”
“I’m really sorry I haven’t been in touch. I didn’t know what to say.”
“I’m so sorry you’re sick. I want you to know I will never try to sell you on some random treatment I read about on the internet.”

“I know there’s no normal to go back to. But I’m here to help you build a new one. (And I’ll bring snacks.)”

You can buy her cards or read her wonderful words here.

I’ve received so many beautiful cards and I’ve saved every single one: they are hanging in my kitchen on a clothesline since I have run out of space on my fridge. So many of the most impactful cards are those I’ve received on my hardest days – something the sender could have never anticipated. Needless to say, it’s a win-win.

A picture is worth a thousand words.

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This is my all-time favorite photo of Daisy as a puppy. I’ll take any excuse I have to share it.

Is there an inside joke you can make time for? A distraction you can offer? Figure that out and offer it up often.

I have one friend who sends me photos of her dog whenever she thinks of it, another who sends me photos of her cat. Two other friends have appointed themselves Official Meme Senders and send me silly photos and videos on Instagram almost daily. They are a welcome distraction from my daily life of appointments and treatment prep.

Offer a specific way you would like to help.

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Image credit.

Have leftover food from a party? Offer to bring it over in case your friend or a caregiver could use a meal. Do you work in the medical field? Maybe you can help navigate some of the research that’s related to their diagnosis. Have a stellar movie collection? Offer to drop some DVDs by for the person to enjoy. Strong personality? Make those calls to the insurance companies on someone’s behalf!

“Let me know if you need anything” is great, but when chemo brain sets in, I’m more likely to remember the specific tasks offered. I’ve had several friends offer to assist with specific tasks: coming over to keep me company, making vegetarian dinners, walking my dog on days I don’t feel up to it, researching what can help with chemo side effects. This is extraordinarily helpful, because if some day in the near future I think, “I really can’t walk my dog around the block today,” I know who I can call.

Do not expect a response and do not disappear.

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Image credit.

I worry a lot – daily, if not hourly, that I am a burden on those I love and or that by sharing honestly what I am going through, I am driving away people that are close to me. Having spoken to others with cancer or chronic conditions, it’s a rather common and shared experience.

It means so much when people reach out without expectation or when silence is met with compassion. A few days ago, I did not have the energy to respond to anything or anyone. When I didn’t respond to the first text, a friend sent a message the following day saying, “No need to answer me. Just sending you love.” A few other friends, when I apologized for not getting back to them sooner, told me not to apologize. They just wanted me to know I was in their thoughts.

When all else fails, borrow one of these.

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Image credit.

“I am so sorry you are going through this.”
“This sounds so hard. I am thinking of you.”
“I’ve been thinking about you a lot recently.”
“I love you.”
“You will not face this alone.”
“What do you need from me?”

Final Thoughts

A cancer battle is awkward and challenging – for everyone involved. I hope these suggestions help you feel better equipped to navigate tough conversations or discussions. At the end of the day, as long as you let the person know you love them, it will be enough.

Thank you to the many of you who are willing to be uncomfortable with me. I am humbled and grateful.

experience, reflection

To Build (and Re-Build) a Home

I’ve been living with my diagnosis for just over four months now, and I’m continually surprised at how my experience of the news has evolved. I recognize within myself the changing landscape of emotions day to day, minute by minute. Now that I’m not purely on survival mode, this diagnosis has settled into the fabric of my identity. It’s not who I am, but it’s certainly a large part of my human experience.

Being diagnosed with cancer didn’t just change my relationship with myself, it changed my relationships. The way I interact with my coworkers, family, and friends has shifted in ways both subtle and dramatic.

If you’ll allow me, I’d like to explain what I mean using the analogy of a house fire. I chose this because it’s ostensibly imaginable and involves a lot of help. (Well, okay, the other reason being I’ve been watching a lot of This Is Us recently. ) It’s not a perfect analogy, but it communicates my point well enough.

Catching Fire

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When a house catches fire, hopefully someone alerts the authorities early enough and firefighters show up. My uncle was a volunteer firefighter, and I have fond memories of hanging out with him in the firehouse when I was younger. Here’s what I know: firefighters are unfathomably brave. They walk into blistering heat knowing their hat might melt to their scalp and they may leave needing medical care of their own. Without firefighters, buildings would burn right to the ground and leave so many without a place to call home.

Eventually, when their job is done, the firefighters leave. After an appraisal, some guidance, and lots of complicated insurance steps I don’t understand, contractors and workers come in to help re-build the house. Anyone who has ever had remodeling or construction work completed can tell you: it takes a long time. Deadlines are set and then pushed back. Calendars are changed. Plywood frames seem to stand bare in the cold, unchanging and without progress. But construction workers are undeterred. They’re hardworking, show up day after day regardless of the working conditions, and stick it out so that someday, somebody can move back in.

There’s another group, too. It contains a wide range of people who aren’t as apparent at first. As the house is burning, there are some who aren’t quite sure what to do in an emergency, or they don’t think it right to intervene, since it appears everything is being taken care of. Maybe some people feel it’s best to stay out of the way and say some prayers that everyone gets out safely and or that rebuilding goes according to plan. Fires are pretty terrifying, so it’s understandable it strikes a chord of fear in some and they don’t want to get too close. Or maybe one of the pipes just burst in a neighboring home, and that person needs to get on it before their basement floods and their possessions are lost. And I’m fairly certain there are some people who are just staring at the moment, still shocked at the fire happening just down the block, on their very own street.

The Afterglow

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Image courtesy of deviantart (psychonoir)

In case you haven’t caught on by now… I’m the house. And the homeowner. (I warned you this wasn’t a perfect analogy.)

When I was diagnosed, I was astonished at the number of people who rushed to help through their words, gestures, and thoughts. I received flowers, cards, text messages, and food. People offered me excursions to distract me from my circumstance, a place to stay in the city, their beautiful stories, their platelets: you name it, I received the offer. It was absolutely critical so soon after my diagnosis. If I didn’t have this outpouring of support during the first few days, I probably would have melted down completely. I’m so lucky to have these first-responders in my life.

In the weeks since, I’ve received less of the “emergency” response and moved into the builder experience. There’s not as many daily offers of help now that the smoke has died down, but a committed group shows up to check in and make sure things are on track. They’re the ones sending a text once a week, just to say hi. They’re the ones messaging me funny memes. Let it be known: these people are just as important the firefighters. They recognize that I’m not in a dire circumstance, but they can see that I’m currently down to the studs, and at times, in need of an extra pair of hands. I’m so lucky to have these foundation-layers in my life.

The third group is tough to describe at times because it’s less of a vocal and visible role. (I myself am not sure who’s entirely in it.) It could be that someone doesn’t feel it’s their place to reach out, or they’re more comfortable stepping back and sending some good thoughts my way. For many, there’s a good chance I haven’t heard that someone I’m otherwise close to is experiencing recent hardship or emotional trauma, and by all means, I WANT you to take care of yourself so you can be all that the world needs you to be. Just as I am lucky to have the firefighters and the contractors, I’m lucky to have the quiet support from people who want the best for me: I swear they are knitting and re-knitting the invisible wings I reach for and strap on my back on the hardest of days.

Truth Telling

What pains me most to admit is that there are people in my life who I expected to show up, and they haven’t. I don’t know why they aren’t able to be around (at least not yet). It’s embarrassing to admit because the number of these individuals pales in comparison to those in the other categories. But to omit this fact from an honest recording of my cancer experience would mean I’m not telling my full truth.

It doesn’t in any way detract from the volume of love, support, and good thoughts I’ve received from others. It’s just as though I expected someone to help me with a task, then something happened and they couldn’t make it, and I never got word. “Well, okay,” I think, and I try to make peace with it and not to take it personally. Because here’s the thing: despite them not being there when I expected them to arrive, I’m lucky to have them, too. Each of them had a role to play in my life in some way. I wouldn’t be who I am without their influence. Besides, who’s to say they won’t show up later?

I try to operate on the hypothesis that everyone is doing the best they can. It may sound spiritually enlightened… but it’s also just an easier way of getting through life without dramatizing too much. I believe deeply that it’s best to leave room for grace and generosity. I fully support giving people the benefit of the doubt. And regardless of whether or not they’re around now, no one is more worthy of that generosity then the incredible people who are part of my life.

A Housewarming: All Are Welcome

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I’ll take any excuse I can to share a Fixer Upper dining room photo.

Here’s what I want you to know: very, very few people can be both a first responder and a foundation-layer, and that’s the way it is supposed to be. Your true, authentic response, whatever it may be, is perfect, valid, and absolutely necessary. There is no need to change who you are or how you respond.

Stop trying to be a builder if you’re a first responder: if you didn’t send me that text that first week after I was diagnosed, I may have not gotten through my first week of living with cancer.

Don’t guilt yourself because you weren’t a first responder and you’re here to build: your support now, in the quieter moments, is so, so needed.

And I promise you, it’s okay to sit this one out, my friend: you may need to be an observer in my experience so you can be the first responder or builder in someone else’s life. Go. I’ve got this. And they need you.

There are very few individuals who have the emotional bandwidth and stamina to show up day after day after day for my needs. I myself get exhausted with my own drama at times. I consider myself inordinately blessed to have more firefighter/builders than I can count on one hand, and I hold them close and try to tell them every day just how much I love them and appreciate them.

There’s a great passage in Elizabeth Gilbert’s book Eat, Pray, Love where Elizabeth describes the difference between her sister and herself through a short anecdote, which I’ll attempt to capture accurately here for you. When her family received the news that another family experienced a tragedy, Elizabeth’s first thought was “my goodness, that family needs such grace right now.” Her own sister responded,”that family needs casseroles,”

Whoever you are, no matter what you bring to the table (grace, casserole, or company), thank you for being part of my journey. I’m lucky to have you here.

appointments, experience, treatment

An ER Visit and a Chance Meeting

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Fabulous rainbow image courtesy of pinterest.

I spent last night in the emergency room. On my list of things to do during the last week of school, this ranks far down towards the end, perhaps just above “give my kindergarteners espresso.”

First, some background. With my medication, I’m nearly always experiencing some form of nausea or loss of appetite. I’ll eat very little at a few meals, unable to choke down foods I previously loved; then I’ll be hungry a few meals later and try to eat as much as I can to take advantage of that window of opportunity. I have to eat even when I don’t feel like eating, which for anyone who has experienced it before, is a complicated issue. I’ve had people comment to me, “I’d love to have that problem!” or “It must be nice to feel like you can lose some weight.” These statements are really hard to hear. If I had my choice, I’d rather feel strong and healthy over sick and skinny, desmoid tumor or not. I suppose the “weight loss” impact might seem appealing, but without nutrition, my body doesn’t have the fuel it needs, which is exactly what happened this week.

At times my nausea is improved by eating (counterintuitive, I know) or at least subsides after a little food and a lot of rest. I spent Sunday laying low in my apartment: I did not feel great upon waking, but I managed to eat some oatmeal by the early afternoon, took a nap, finished a book, and felt better. On Monday, little appealed to me at lunch, but I made one of my go-to dinners: a falafel wrap with spinach, cucumber, tomato, and goddess dressing. I got to bed a bit early and decided I’d discuss the nausea with my oncologist the next day at my monthly appointment.

I never got to that appointment, because I was soon experiencing what I assumed as Stomach Virus Number Three of the past 30 days. I sent a text to my sister Jenna, who was scheduled to attend the appointment with me and is currently in nursing school. When it was clear that the virus was not letting up, she and my mom drove up to my apartment in the early hours of the morning. (I’ve said it before and I’ll say it again: my family is the greatest.) They took turns caring for me for the ten hours I was actively sick, looked after my super confused and anxious dog, and tried to catch some sleep ON THE FLOOR and on my couch. (Seriously, who does that? I can’t say enough how lucky I am.) When I was well enough to be in the car, they brought me to my parents’ house.

For two days, I had the ultimate recovery fake-out. I’d be fine during the day, eat a piece of toast and drink Gatorade, and send an email to my boss saying “should be good for tomorrow!”, only to end up sick that night. Finally, my oncologist’s office offered to get me a spot sometime the next day for an infusion of fluids and anti-nausea medication. They called in an oral anti-nausea medication and an anti-spasm prescription for my stomach cramping. But when I couldn’t even keep that down, my Mom went into “Mama Bear” mode and gently, yet insistently, offered to take me to the ER. We have an agreement: both of us always respect the other’s choices, but there will be times when we can straight up insist on having the final call. I knew I was in no place to make decisions about my care, so she googled which emergency room had the shortest wait, and off we went.

So, that’s how I ended up hooked up to an IV bag with fluids to hydrate me, anti-nausea to ease my belly, and morphine to take the edge off the pain. I finally felt some of the relief I deeply craved, and I remarked to my mom that it was the best choice I’d made in days.

Shortly before I was discharged, I would discover the full truth of that statement. One of the attending nurses on duty walked in and introduced herself. She had read about my medical history and said she had to meet me. Why? She herself had a desmoid tumor. I was floored and blinked twice to make sure this story wasn’t crafted by the morphine I’d been administered. As she worked on my discharge paperwork, she shared with me about her diagnosis, her surgery, and about her life five years later without a recurrence. Having only met one other Desmoid Tumor patient before (hi, Dakota!), this unscheduled and unorchestrated meeting was completely out of left field – and confirmed my belief that the ER was the best choice.

What’s next? Good question. I don’t really know. I’ve got another appointment with my doctor to discuss changing my medication. Since my white blood cell count was good on my latest labwork, it could be that these bouts are not actually stomach viruses, but a side effect of my medication. My oncologist advised me to stay off my medication until we can discuss it in more depth.

For now, I’m happy to be back on the couch with Fixer Upper reruns, water to drink, and slices of banana to snack on when I feel up to it. It’s been a wacky week, but as I’m continually reminded, living with this diagnosis means nothing that ever goes according to plan.