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News.

I didn’t tell many people I was getting a scan last Saturday. I felt like a broken record, always delivering the same news. As heartbreaking as it is to receive bad news, I always find it harder to share it. I wanted better results, and I knew how badly the people I love wanted them for me.

Which is why I am so, so very glad I don’t have to give you bad news today.

My tumor has begun to shrink.

It took 18 months since starting treatment, two types of oral chemo, and six rounds of IV chemo, but this thing is slowly responding.

Here’s the details: it shrunk .6 cm in one direction. It grew .1 cm in another and shrunk .1 cm in a third, so overall a net change of -.6 cm.

It is a small change and I don’t care. It’s the most measurable response I’ve ever seen! As one of my friends put it, it can’t shrink three inches if it doesn’t shrink .6 cm. Here’s the best part: I was told at my second opinion earlier this year that the hardest thing about desmoids is often breaking the pattern of growth/stability and getting them to start shrinking. Once they make that switch, some patients can eventually even come off treatment and continue to watch their tumors decrease in size. There is a lot of reason for me to feel hopeful about the direction my tumor’s taking.

When you have a disease like mine, it’s so hard not to look around you and wonder why you’re suffering while someone else is healthy, or why someone else didn’t make it and you’re still here. There’s a lot of searching for reasons. I don’t have any answers. I’m still a cancer patient, and I’m still in active treatment. I have an unknown number of rounds ahead of me. But the hope that this moment has gifted me is immeasurable. I finally know change is possible, and that’s victory enough for me. I’m going to revel in it for as long as I can, even if I don’t know why.

(But also, no one can prove that it *wasn’t* the fact that I listened to the Spice Girls in the MRI machine. You can bet I’ll be spicing up the life of my radiologist in three more months when I go back for another scan.)

Thank you so much for continuing to read along. I am so grateful for your love, prayers, and prayers, through thick and thin!

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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.

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Uncategorized

Join Us for the 2019 Running For Answers 5k!

Several weeks ago, I went to see one of my favorite people, Glennon Doyle, speak about her life and career. Glennon is an author, activist, and the founder of Together Rising, an incredible non-profit which rushes in to help people in crisis. The house lights were nearly off in the theater, but I wasn’t going to miss my chance to take notes, so I scribbled in the dark with my notebook practically held up to my chin. One of the moments that will stick with me for a long time is when Glennon explained that she is asked, all the time, how to find peace and happiness. Her response is one of the best pieces of advice I’ve ever heard. She said (and I’m paraphrasing from my notes, which are a little bit on top of each other, so forgive me):

Peace and happiness? I don’t know what peace and happiness even means! I don’t know how to find them! But I do know how to find your purpose. Don’t ask me what brings you happiness. Ask yourself what breaks your heart. Be brave enough to go there. Rush to the places that break your heart. Stand there. You will find your people.

There are so many heartbreaking things in our messy, beautiful, broken world. There are so many places to rush to. But right now, this tumor’s breaking my heart… a lot. And the Desmoid Tumor Research Foundation has been the place I have rushed to, since the night I was officially diagnosed, to find others whose hearts are broken by this disease too.

Running for Answers 5k

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The 2018 Running for Answers Survivors Photo. Unofficially speaking, The Patient Meeting and 5k are the largest annual gathering of desmoid tumor patients in the world! 

This year will be the 10th Annual Running for Answers 5k in Philadelphia. Last year was my first year participating, and it was a blast. While this event may have been born of heartache and frustration, it has become a celebration of community, strength, and resilience. This event is one big morning-long party, and I like to think the presence of the Unicorn Squad has a lot to do with it! Last year, we were the team with the highest online fundraising amount- which was super exciting! I was the featured speaker, and once those duties concluded, I walked the route and ate ice cream. Then I basked in the glow of how lucky I am to be so supported.

If you missed out on the fun last year, here’s your chance to join the Squad this year! The 10th Annual Running for Answers 5k Run/Walk will be September 22, 2019 in Fairmount Park. For $35 you get race registration, music, free cheesesteaks, free ice cream, post-race yoga, and word on the street is that the first 400 registrants get a cool bandana as well. And if you register by tomorrow, August 15, you get a free Unicorn Squad tshirt as well! (I know, ack, this is late notice – I could have sworn I shared about it earlier. Sorry! Chemo brain! But if you register after August 15, you’ll still get all the cool perks, just no tshirt.)

Summary: $35 donation. September 22. Music. Walking. Running. Hug from me. Food. Massive fiesta feeling. My eternal gratitude.

Want in? Click here to register and join Team Unicorn Squad!

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FAQ’S

Q: Rats! I don’t know if I can make it that day! What can I do?
A: You’re still welcome to register by tomorrow, 8/15, if you want the tshirt! Your $35 registration fee will go right to the DTRF, and I’ll get in touch with you to give you the shirt at another time. If can’t register until the day before, that’s cool too! You’re always welcome to join!

Q: I can’t make it, but I would love to make a donation. Where do I do that?
A: Thank you so much! You can click on this link and make a donation by clicking on the “donate” button, under the image of the colorful unicorn.

Q: Unless I’m being chased by a rabid animal, I don’t run. Can I still register?
A; Absolutely! I walked last year. There’s always a solid contingent of walkers.

Q: I am a Very Serious Runner. Can I register?
A: Of course! This is a timed course and there are prizes in each age group as well.

Q: This is not a question. But my child is the next Wilma Rudolph. 
A: Wow! That’s impressive! You should register your kid – there’s a 1/2 mile fun run they can participate in right before the 5k kick-off!

Q: Can I bring my human baby and/or my fur baby?
A: For sure! The course is paved and stroller-friendly.  If your kiddo is of the four-legged variety, bring them on a leash!

Q: I have a question that’s not listed here!
A: You can probably find the answer on this Event Details website. You can also message me here on the blog!

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The amazing Drew University crew!

Can’t wait to see you there!

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

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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

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Unspoken, Part 3.

This post is the third and final in a 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.

April 21-27 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.


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A pile of my discarded medical waste from fertility treatments.

On the day of my egg retrieval, I arrived early to check in at the front desk. I had filled out the paperwork to appraise the medical staff of my history, and then sat down. A few minutes later, I was called up to the front desk and told to swipe my card as instructed for payment. I squinted, blinked, and looked again. The total displayed on the screen was nearly $500 more than what I had agreed to at the clinic. I explained this to the front desk attendant, who told me there was nothing she could do. I looked over to my Mom, and then down at the total again.

There was no going back. I couldn’t start the process again, and there was no time to try to contact the fertility clinic. Drawing my lips together into a firmly held line, I swiped my card and took a seat.

Everyone I spoke with that day was as nice as could be, but it didn’t keep my heart from pounding as I was called back and got into a gown for surgery. My hands were shaking, my eyes watering, and no amount of yogic training could keep me in a steady rhythm of breathing. I had a pre-surgical meeting with the doctors and was told I was in great hands. I flinched at any reference made to how the anesthesia would be “the best sleep ever.” After what seemed like simultaneously hours or seconds, it was time. I was taken back to the operating room, where a radio was playing and everyone in the room was laughing and making jokes. It strikes me each time that I’m in a hospital that while this is a pivotal day in my life, it’s just someone else’s Saturday. With my palms sweating and my arms retrained for surgical prep, I struggled to keep myself calm. The anesthesia started through my IV, and then there was nothing.

I came into consciousness in a curtained room. I was sore and I didn’t see anyone I recognized. I hated not knowing how long I had been out or how I had been seemingly interacting with the nurse before remembering or realizing. As the nurse checked my pain level, I was told not to exercise for two weeks – which was news to me and another disappointment, as it eliminated any plans of getting in more normalcy before starting chemo. After a little while, my mom was brought back and we were released to go home. I was cranky and in pain. I had re-lived my most painful memory and paid more than I expected on top of it. I was tired. I just wanted to go home and watch Netflix.

As I lounged on the couch a few hours later, sore and tired, I got a phone call from the surgical center. A staff member informed me that they were able to retrieve seven eggs. Of those seven, three were usable.

My heart stopped. I had not prepared for this.

In the research I had done, numbers mattered. There was the possibility of 0 – 30 eggs during the retrieval, with the far ends of the spectrum being less frequent or likely occurrences. The younger you are at the time of your retrieval, the more eggs the doctors are typically able to retrieve. Of the eggs retrieved, 60% are usually viable for freezing. Most people about my age were able to have at least 12-15 eggs retrieved, and my doctor stressed in our consultation appointment that at 29, I would be happy with the results.

But I was far from it. They’d retrieved well under the number of eggs I had hoped for and fewer than half were viable.

The number game quickly continued. That meant that if I chose to go through IVF down the road, 70% of those mature eggs fertilize successfully. I’d have one to use and one as a backup. For my age and the number of eggs retrieved, there was a 16-38% chance of IVF resulting in a child’s birth.

16 – 38%.

That felt like nothing. If there’s a 16 – 38% chance of rain, I don’t bother to pack an umbrella. Hell, I’d get on a motorcycle if offered, and I’m pretty cautious.

I was crushed. I had convinced myself that undergoing these fertility treatments would secure my options, but in reality, I had paid a lot of money to secure another very expensive gamble in the future. I was crying and I wasn’t even able to name why. Was I crying for the children I maybe wanted and now felt were out of reach? Or was it because my body had failed me, betrayed me, yet again? In the days following, it was harder still was telling people who knew about the procedure and asked how it went. “Well, you don’t want more than three kids, do you?” “All you need is one!” “Three is better than nothing!” Well-meaning, I’m sure, but each remark smarted, the wound still raw. I wondered, for the millionth time, how much more heartbreak I could endure.

It’s been just over a month since my retrieval. I’ve had time to get a little bit of distance and perspective. If I could do it all over again, I wouldn’t. Regret is a tricky thing: I did the best with the knowledge I had, but it doesn’t stop it from hurting. I wish I had been prepared for the possibility of disappointment. Over and over again, people told me I was making the right decision and assured me it would work out fine. Looking back, I realize now that the majority of those people were mothers – those who both can’t imagine their lives without children – and doctors – those who can profit, exponentially, off of the desire and desperation of others to have a baby of their own. I am not saying that their words were motivated by anything other than comfort or assurance, but there’s an innate bias in their opinion.

I don’t think I’ll do anything with these eggs. I’ll probably donate them to research after the five years of freezing I’ve prepaid is up. Truthfully, I cannot forsee a future in which I’m willing to open myself up more to the potential heartbreak of pregnancy or IVF. I’ve already been hurt enough, and the process hasn’t even included an attempt at pregnancy. My fertility decisions were initiated in the interest of preserving choice and options. My heart aches for those who have endured this cycle hoping for pregnancy, month after month, and been disappointed. The emotional and financial stress of fertility treatments is staggering. One round of IVF, without medication, is $14,000 (national average, USA). These are rarely covered by insurance. The cost for surrogacy is between $70,000 – $100,000. Even if I find myself in a place where my emotions are changed, I cannot see a reasonable future for myself where that is not a shattering financial undertaking.

“The final stage of healing is using what happens to you to help other people.” – Gloria Steinem

In this narrative of loss, here’s what’s left, my truth and my story.

If I sound bitter, I am. If this all seems indignant, you’re right, I am. If this wisdom seems hard won, it is.

I do not understand why my fertility was never a topic of conversation before it needed to be decided upon, and fast. As I journey through this experience of having an orphan disease, a rare one in a million tumor, I am learning that my doctors know about as much as I do about my diagnosis. I’m also certain that in this country, women’s health – their pain, their instinct, their voice – is taken less seriously, or at the very least, with less consideration, by those who have the power to make decisions.

If I could do it all over again, I would take the money and go on a trip. Spend five days in the islands or maybe Italy, and come back with a clear head and a tan, heartache-free, ready to put those chemicals in my veins. If I could do it all over again, I would have asked my doctor about possible risks to my fertility when IV chemo was first mentioned as a possibility last year.

If I could do it all over again, I would hold the hand of the girl in the purple sweater who sat in the thoracic surgeon’s office. I’d wipe her tears and tell her that yes, it is a sarcoma. That yes, it will hurt, more than you ever thought imaginable. But, your heart will continue to fold in on itself, shatter, repair, and expand in more ways you ever thought imaginable.

Yes, I’d say, your body may have failed you, tricked you, deceived you, and betrayed you. But your magnificent, beating, hurting, growing, divinely human heart is intact. It will amaze you.

Someday, years from now, if my tech-savvy thirteen-year-old is reading a cached version of this blog, simultaneously cringing at the faintest hint at my reproductive organs and beginning to simmer an argument about being unwanted, calm down. You were wanted: very much so, so much so that something huge and wildly transformational happened to change my mind. Go clean your room.

And if no child of mine ever reads this, or no child of mine ever exists, and it’s seventy-year-old Christina reading this on some futuristic device I can’t yet imagine, hello. I wonder what you would want to tell me. I wonder how your heart has grown.

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Unspoken, Part 2

This post is the second in a 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.


The next day at the fertility clinic, I was taken back to a tiny room with no windows. A woman who spoke very quickly and a touch too loudly put photocopied papers about in-vitro fertilization in front of me. She proceeded to draw all over them, numbers and figures and arrows zigzagging and punctuating the infrequent pauses in her sentences. I clung to the facts that I could. I would need to give myself injections for nearly two weeks and come to the office every day for monitoring. The egg retrieval would require me to go under anesthesia, something I deeply feared since my last surgery. Was I married? In a relationship? The doctor cautioned me against freezing embryos with donor sperm, because if I had a partner someday, they may not want to use them. I needed to have an ultrasound today, now, if I wanted to move forward. They’d also need to move my chemo date back. What’ll it be?

I didn’t talk and I didn’t move. Everything was happening on hyperspeed. I felt small and powerless. This was not a woman who knew what to do with an indecisive patient.

She and her assistant talked around me, to each other, to my mom, and suddenly, without any spoken on nonverbal consent from me, she left the room and started preparing the other room for an ultrasound.

I can’t begin to tell you how dehumanizing this was. I may not have known if I wanted an ultrasound or not, but I sure as hell deserved the dignity of being treated as an autonomous human being.

The day continued in tears. Everything was moving faster and faster. I was inconsolable, unable to think of anything else, and desperate for guidance or a sign of what choice I should make. A friend of mine who was navigating her own fertility decisions encouraged me to get a second opinion. She reminded me, gently and lovingly, that even if I did go through with the retrieval, I wasn’t obligated to use the eggs. This was a way to preserve choices and options, something I did not have otherwise. She shared the name of a fertility clinic closer to home, a half-hour away. Over email, the clinic gave me an estimate of cost, and it was a third of the cost of my first opinion. I didn’t want price to be a driving factor, but I’d be lying if I said it wasn’t a consideration.

I went to get a second opinion at the clinic she recommended. This room had windows, which made me feel less claustrophobic, and I came prepared with my own tissues. I explained to the doctor the specifics of my diagnosis and my deeply held fear of surgery and anesthesia. She listened carefully, explained more about the process, and how they could, fortunately, start treatments at any time given my personal medical history, which was really encouraging. The number of days in the preparation and retrieval process varies as they monitor your hormone levels with daily bloodwork. The surgery would likely fall the second weekend of March, and any physical activity would need to be stopped in the days before the retrieval to reduce the risk of any complications.

I hesitated. I was in a production of Peter and the Starcatcher, and we ran for two weekends in March. I had been rehearsing since December, jumping all over boxes and platforms. I had no understudy, and more so, I did not want to miss the one thing I was looking forward to before my life changed for the foreseeable future. When I shared this, there was an undercurrent of judgment, likely a combination of both real and imagined circumstance. I understood that to someone else who knew that parenthood was what they wanted, it sounded insane to choose a community theatre production over having a child. But this was my source of joy, the thing I had to call my own before turning my body over to the imprisonment of chemicals and poison for a term of 6-13 months. I valued this artistic commitment and the fulfillment it brought me over undergoing a costly medical procedure that I wasn’t even sure I wanted.

The doctor proposed another idea. What if we waited, maybe another week? It would delay the retrieval until after the show had closed. I could delay chemo by one week, and I’d be in the clear.

I felt I had found my answer, and that maybe, this time, I could have it all. With tears of relief, I agreed to start fertility treatments.

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The contents of my fridge: raspberry preserves, quinoa, almond milk, spinach, eggs – and three bags of fertility medication.

After a blood test and another ultrasound, it was time to start fertility injections. I was fortunate enough to receive the medication completely free of cost from the LiveStrong foundation. When the box arrived, it was nearly too large for me to carry. I quickly stashed it in the refrigerator, where it would need to be kept to maintain efficacy.

Here’s how a day on fertility treatments looks: I’d have an appointment between 7 and 8 AM almost every morning. They would draw blood, which would be tested for various hormone levels, and perform an ultrasound to see how the eggs were developing. Following the results of the blood test, I would be called, usually by 2 PM, with instructions for that evening. I’d have at minimum one shot to self-administer, usually two, at the same time each evening. It sounded scary, but there were videos to watch online, and soon, they became routine. I would swab a spot near my belly button with an alcohol pad, use either the pre-mixed pen (easy) or would quickly mix and fill a syringe with the hormone shot needed. Soon, my stomach was full of tiny pea-sized bruises as souvenirs of my courage.

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You know the saying: another openin’, another show, another injection.
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The beard really completes the look.

 

 

 

 

 

 

 

 

 

Since I had rehearsals most nights, I’d duck out of running a scene, grab my insulated lunch box with my medication inside, and give myself the injections. Mind you, I was playing Smee (of Peter Pan fame), so I was doing this all in costume while wearing an artfully applied beard. There was an evening that I was a passenger in a car when the time came to give myself the shot. I politely shielded myself from my friends in the backseat and injected at a red light. I even administered the final timed, intramuscular “trigger shot” on a New Jersey Transit train, which thankfully had stopped at Secaucus at 10:31, just sixty seconds after the prescribed and water-tight time of 10:30. I joked to friends that, god forbid, I ever had to do this again – I should start a youtube channel and give myself the shots while skydiving.

Fertility treatments are not insane by any means, but not what I’d call a comfortable process. I constantly felt bloated and like I had basketballs in my stomach. In addition to the emotional weight of the chemo situation and telling my students that I wouldn’t be returning to work, I was pumped sky-high full of hormonal as well. In the final scene of Peter and the Starcatcher, I had to deliver the line, “until one night, many years later, she watched as Peter flew off, with her daughter in tow.” Its emotional significance was not lost on me.

As the end of the process neared, I knew the next hurdle would be preparing to undergo anesthesia, which filled me with fear. The last and only time I went under for surgery was when I thought my tumor was a lipoma, and this nightmare road to diagnosis had begun. In the time since, I have experienced nightmares in which I black out and wake up presumably hours later with no control over what had been done to my body. But through a stroke of luck, one of my best friends who is an OB-GYN works at the center where my retrieval would take place. He promised to get coverage so he could be there to hold my hand as I went under.

As we neared the “any day now” territory, I waited for the call each day that meant my retrieval would take place two days later. The call finally came and the nurse told me it would be two days later, on a Friday. I called my mom and asked her to take off work so she could drive me to the surgical center. Unfortunately, I had called her too soon – just a few hours later, I got another call from the fertility clinic. My retrieval would be Saturday instead. I sent a text to my friend so he could arrange for coverage at work. “Oh no,” he responded. “I can’t be there then, I have a meeting I can’t get out of.” He promised to talk to the anesthesiologist and find out who would be on surgery that day. I understood, and I was so grateful for his help, but I couldn’t help but feel disappointed.

I would face the operating room alone.


To be continued.