We could all use some good news- luckily enough, I’ve got some to share!
My tumor is still shrinking, ever so slightly! After a year of Doxil infusions, it’s just under 2 cm smaller. I’ll take it!
*WHILE I HAVE YOUR ATTENTION*
The drug that made this possible is the same drug that makes me immunocompromised. I know what you’re thinking! “But she looks great! Gosh, she’s beautiful! Stunning! Ravishing!” (Aww, shucks! You’re too kind.) Appearances aside, my white blood cell count is below normal range.
So when events are cancelled, or you’re told to wash your hands in excess of 1,500 times while singing your song of choice, remember that COVID-19 precautions are not necessarily about the healthy in our communities. It’s for people like me who were *already* at risk of contracting Lord-knows-what-else. If someone you love is elderly, pregnant, or undergoing chemo, you owe it to them to respect the recommendations of medical experts.
And if you don’t love someone with those conditions, you should STILL be a decent human being and comply! Wash your hands. Disinfect your cell phone. Stay home whenever possible. Order in from a Chinese food restaurant whose business has probably suffered prejudice from the ignorant. Greet people with jazz hands! (I’ve been waiting for this opportunity in particular my whole life.)
You likely come in contact with dozens of immunocompromised people every day without realizing it. Help us, and our terrified white blood cells, stay safe.
Thank you for coming to my guerrilla-style, sanitized TED talk. Be well, my friends!
I hope you’ve been enjoying the last days of December. I wanted to give you an update on where I’ve been and where I (think I) am going.
December 2019 Scan Results
In case you haven’t already heard (quick reminder: you can find me on instagram @girlmeetscancer, it’s where I’m spending most of my social media time these days), the results from my December MRI are back. My tumor is continuing to shrink! It’s down another 0.7 cm overall, which brings my total shrinkage since beginning doxil to 1.4 cm total. I celebrated with a Christmas themed selfie in front of my tree.
Treatment in 2020
After my infusion last week and meeting with my oncologist, we agreed to another three additional rounds and a scan. So I’ll have infusions number eleven and number twelve in 2020, followed by a scan. And then, it’s a big question mark.
The hard thing about desmoid tumors is that they are, in my oncologist’s words, “notoriously unpredictable.”
Treatment: My treatment options are – how to put this? – either dismally uncomfortable or not medically appropriate. There’s one other commonly used IV infusion, but it’s insanely aggressive and would treat me worse than doxil. I’m not a candidate for HIFU or cryoablation, which are high-tech surgical procedures, since my tumor is too large and too close to my brachial plexus. That leaves oral chemotherapy, of which there is one viable option remaining: pazopanib. Pazopanib is related to Sorafenib/Nexavar, the drug I was on for 9 months last year and gave me a whole host of issues: constant nausea, vomiting, emergency room trips, etc… only Pazopanib’s side effects are reportedly worse, which makes it very unappealing as well.
Here’s why pazopanib could be awesome: It could maintain the shrinkage that I spent a year to gain.
Here’s why it is scary: If all goes according to plan, I’ll be headed back to work once doxil is over… only I’ll be headed back then on a drug where I can expect nausea, vomiting, and more GI issues.
Active Surveillance: There is a chance that doxil switched my tumor into a pattern of stability/shrinkage that it had previously not seen, and that’s potentially a vote in favor of active surveillance (what is sometimes referred to as “wait and watch.”) Meaning, I’ll go off of all medication and get scanned after a specific amount of time to see if this thing is growing/shrinking/stable (which sounds like the name of a terrible reality show).
Here is why active surveillance could be awesome: Boy oh boy, do I miss my body. It’s vastly different than the body that I’m in now. My body, free of chemo, free of treatment side effects…. I can’t quite remember what it’s like to not have pain caused by treatment, or fatigue, or nausea, or some combination thereof every day. I’d love to see what this old girl can still do.
Here’s why it is scary: I could lose all of the shrinkage I fought so hard to achieve over the past year of doxil infusions. My tumor has never been stable without medication. The idea of this leap of faith terrifies me.
* If I were to go on active surveillance and my tumor were to grow, I would be eligible for a clinical trial that’s currently enrolling… but only if it grows 20%.
** If I enrolled in the trial, and I’m the control group that’s getting the placebo and my tumor continues to grow – I’d be switched to receive the drug… but only if it grows 20%.
*** I’m potentially looking at 40% overall growth before getting actual treatment.
As you can see, there’s a lot of different factors to consider. It’s hard not to look at everything and be overwhelmed, so I try to look at it one step at a time. Some days I do a pretty decent job at achieving this perspective and other days it’s a glorious mess. So it goes.
2019 in Review
I’m trying really hard not to fight this deeply engrained thought that I haven’t accomplished anything this year. I didn’t get to do… well, a lot of what I love. It’s hard to fight this notion that productivity is the only important measurable outcome of life, not just because I’m inapprorpiately Type A, but because people always ask how I’m “staying busy” while on disability, or how I’m “keeping my mind sharp.” The truth is, I’m resting 25 out of 30 days of the month. I’m watching The Golden Girls, napping, or working on a puzzle. (If that kind of productivity matters to you, I finished 6.5 seasons of The Golden Girls and finished 6 puzzles.)
At the end of the day, I stayed alive, and I try to tell myself that’s enough. And when that doesn’t work, I try to focus on numbers that help me feel proud, even if it’s just for withstanding.
$150,000 worth of chemo
$11,029 raised by the Unicorn Squad for the Desmoid Tumor Research Foundation
1,732 miles flown for CancerCon
900 miles traveled for infusions
210 miles traveled for a second opinion
76 members of the Unicorn Squad at the Running For Answers 5k
30 total researched social media posts for the Desmoid Tumor Awareness Month
7 prescriptions for chemo side effects
2 surgical consultations
1.4 cm of shrinkage
1 tumor, measuring in at 4.9 cm by 10.9 cm by 8.2 cm.
This is not at all what I thought my life would look like at age 30. I’m still angry about it, to be honest. I still feel robbed of normalcy. To deny those facts would mean taking the humanity out of this experience and reducing the narrative to a neat, linear story. I’m not interested in either of those things. I’m here to tell the truth.
So here it is, the truth in all its messy complexity and unpolished thoughts: I don’t know what any of these pieces or numbers or treatment options mean. I’m grateful in some ways and very much aching in others. I feel simultaneously more connected to other patients than ever and also so lonely it hurts. At the end of the day, all I can hope is that the noise I made this year, whether advocacy, fundraising, or simply shouting my story loud enough so someone will hear, means that someone else will someday enjoy a greater sense of normalcy.
Thank you for reading. May we all experience health, peace, and joy in 2020.
Let’s get this out of the way: I had a scan last Thursday. My tumor hasn’t changed significantly. There’s a very tiny measurement of growth. One of my lymph nodes is notably enlarged, which they think is an immune response at this point.
Bottom line: I’m suffering all of these side effects with no real difference in my tumor.
I’ll probably have three more rounds of Doxil, as scheduled. I may be eligible for a clinical trial. A lot is up in the air, as usual. I’ll let you know as I know.
After the phone call, I holed myself up in my apartment. I cried. I told my parents to ask people not to call. I cried some more. I ignored text messages and phone calls, opting to post my disappointing news on Facebook and Instagram to rip the Band-aid off and relay the news as quickly as possible. I watched four straight episodes of Chernobyl, because nothing made sense except for the world being on fire and people looking at each other asking, “how could this have happened?”
In the days since, I struggled to get out of bed. (I’m increasingly grateful I have a dog to hold me accountable.) I’ve noticed a few thoughts circling in my head, and the more I think about them, the more they made sense. They are not nice or comfortable. They are not anything you will find on a greeting card. Maybe they are wisdom, maybe just my own thoughts cloaked in sadness, or bitterness masquerading as knowledge, but nevertheless, they’re hard-won and I believe them to be true, for me, right now.
Three Uncomfortable Truths
1. It is not my job to make anyone comfortable: it is my job to tell the truth.
I recently read a memoir by Georgia Hardstark and Karen Kilgarif, the hosts of one of my go-to podcasts, My Favorite Murder. There’s a beautiful passage in the book in which Karen describes a picnic she attended. Her mom was diagnosed with Alzheimer’s, and a friend asked her how she was doing. Instead of resorting to sugar-coating the truth or writing off her own experience, as she was accustomed, Karen said a “truer thought hit her.” Here’s what happened next. Read the whole thing. It’s worth it.
“Having a parent with Alzheimer’s islike living inside a horror moving that’s playing out in real time. It’s as horrifying and awful as it is tedious and mundane. It’d be like if you lived in the movie Jaws. You’re happily swimming in the ocean and then everyone starts screaming, ‘Shark!’ You start to panic, but then someone else yells that the shark is twenty miles away, so you calm down a little. But then a third person gets on the bullhorn and says you’re not allowed to get out of the water ever again. So you start panicking and flailing and fighting and yelling for help. You scream about how unfair it is, you having to be out in the ocean with this killer shark alone when all those other people get to be on the beach… You finally start to accept that it’s your fate. But then you start thinking everything that touches you is the shark. You can’t calm down because you can’t stop reacting to things that aren’t there. You grab wildly at anything that looks like a weapon, but every time, it turns out to be seaweed… You get really tired and cry so hard you think your head will burst. And then finally, you gather all your strength and turn and look at the shark. Now it’s 19.8 miles away. It’s the slowest shark in history, but you know it’s coming right for you. And after five years in the water, you start rooting for the [explative] shark.”
Karen said the mood of the barbeque changed. She was embarrassed that she overshared and brought things down. And then a friend who had his own experience with Alzheimer’s grabbed her by the shoulders and said she was so right, that he felt the exact same way. “After that, I never lied when someone asked me how things were going with my mom. Instead of worrying about the comfort of the person who was asking, I started thinking about whoever might be listening to my answer,” Karen explained.
I love this story for so many reasons. I’ve written before about how being on chemo without progress is like treading water. I have wanted the shark to hurry on up, too. But most importantly, like Karen, I have decided not to waste any more words or time on sugarcoating my experience.
I started this blog to keep people updated on my treatment and to share my experiences in an effort to increase understanding, but more than anything, it is a way for me to shout out into the void and say “hey! Anyone else out there?” And let me tell you, it’s such a relief that a few people have shouted back, “Yes! Here! I am here!” I have met several people, both in person and online, that are also facing this confusing, life-altering diagnosis. That this blog has a wider audience than just desmoid patients or cancer patients is still rather remarkable and surprising to me. So if it has some wider-reaching posts or more enduring wisdom scattered among the treatment updates – awesome. But I’m truly writing for the 5 people that are in the water too, who respond, “oh my gosh, this shark. It’s awful.” And for their sakes, I will not lie or water down my truth, because maybe, on the rare occasion when the stars align, it will be exactly what they need to hear.
2. I do not owe anyone my optimism.
As I read recently in the Benediction for an amazing woman who the world lost too soon, “[b]lessed are they who can’t fall apart because they have to keep it together for everyone else. Blessed are those who ‘still aren’t over it yet.'”
I’m sorry to tell you that sixteen months post-diagnosis, I’m still not over this whole tumor thing. On Friday, I wasn’t over my results being so disappointing. I’m still not. When your skin is blistering and peeling, your joints ache, ten hours of sleep is insufficient, and it hurts to simply have your elbows touch your bedsheets, it’s really hard to keep your chin up, to expect miracles, to stay positive. These are things that I hope to do, and I expect I will someday, but I do not have the bandwidth for right now, and I think I’m allowed to be furious and rage at the world for a bit.
As a society, we like our cancer patients bald and brave. We like the completed, abridged story: diagnosis, successful treatment, the afterglow.
There is a truthful but uncomfortable article that I came across last year in which the author writes, “I think that as a culture we place unreasonable expectations on the people we love when they’re very sick. We need them to be strong, upbeat, and positive. We need them to be this way for us… There’s nothing wrong with hope. After all, Emily Dickinson says, ‘hope is the thing with feathers,’ but not at the expense of canceling out all the other complex emotions, including sadness, fear, guilt, and anger. As a culture, we can’t drown this out.”
I am glad to be someone who is perceived as happy and hopeful… but I am no Pollyanna. And I certainly do not want the fact that I have cancer to distill my personality to brave, optimistic, and positive. Maybe I am those things, but if I read that character in a play, I’d call her boring, flat, and unrealistic. Ask anyone in close proximity to me and they’ll confirm: I can be moody and irritable, and bitter and sarcastic. (You know, human.) I do not have the energy to pretend to be something I am not. As I said in uncomfortable truth number one, I’m interested in the truth. If my truth is hopeful some days, then it’s hopeful. If it’s angry others, then it’s angry. Neither of those things is bad, and both of them are true.
3. It does not get easier.
It just doesn’t. Not after the pathology comes back. Not after telling the news a million times. Not after half a dozen MRIs. Not after starting a blog. Not at all. Sorry.
This is the analogy that makes the most sense to me, shared on a friend’s post on Facebook.
“Imagine you’re going about your day, minding your own business, when someone sneaks up behind you… You feel something press up against the back of your head, as someone whispers in your ear. ‘Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life. I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?’ This is what it is like to be diagnosed with cancer. Any stage of cancer. Any kind of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.”
I can hear you asking: so if it doesn’t get easier, then what?
I don’t honestly know. I’m still working on it. But maybe you learn to celebrate the tiny victories that you can, like getting out of bed, making it through a class at the gym pretty successfully, or not needing a painkiller. You smile. You find professionals who can help you make sense of this mess and hopefully give you tools to cope. You cry. You hope and pray that some of this has a purpose. You try, with every breath, to put one foot in front of the other and remember that despite it all, you are here. And you try to be grateful for it. Maybe some days you’re successful, others not so much. But you try, and it is enough.
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.
“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
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.
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.
I’ve been sitting with some news for a few weeks, and I’m ready to share it with you.
Starting next Thursday, I will be undergoing IV chemotherapy at UPenn to try to shrink the tumor in my chest. Infusions will be once a month for anywhere from 6-13 months. This specific chemo is called Doxil, and its nickname is the Red Devil.
I think I knew somewhere, deep down in my heart, that I would end up here. When the medication I tried for nine months, hailed by those in the medical community as a Top Oncology Breakthrough of 2018, failed to shrink this thing or halt its growth, I had my suspicions that I’d need to treat this aggressive tumor aggressively.
The knowing doesn’t make it any easier. The knowing and the coming to terms with are two completely different things.
Over the past month, I’ve done my research and explored the shortlist of options I was left with after my last scan. I requested a consultation regarding cryoablation, a specialized surgery in which my tumor cells would be frozen and hypothetically, my tumor would begin to die. The specialist told me pretty immediately that I was not a candidate: given its size and location, there was a good chance they would paralyze my arm in the process of treating the tumor. I got a second opinion at Johns Hopkins, where the oncologist confirmed the course of treatment my doctor recommended. I considered HIFU, which is only done at Stanford University and would require consultation, massive travel expenses, and temporarily uprooting my life (not to mention a family member). I ultimately determined I did not want to go down that road unless I absolutely needed to do so.
My alternative to all of the above was to wait and watch. It’s the one I struggled with most. On one hand, I desperately long to go back to my normal life. I’ve been enjoying living treatment-free and all the seemingly mundane perks that go along with it: going to classes at the gym, being in a show, eating whatever I feel like without nausea, having enough energy to stay up until 10 PM. But behind all of these gifts, I would be living with a “somewhat stable” tumor with the potential to do irrevocable damage. My pain has already increased. The measurements have only gotten larger with each scan. I can’t watch this tumor continue its slow, destructive march.
In the end, I decided that it serves me far better to put in the time for more aggressive treatment now, as a young, healthy, single twenty-nine year old, rather than potentially face the same conclusion when I’m older and life is somehow, mind-blowingly enough, even more complicated.
There are lots of things I have to say about the last few weeks. I want to tell you why it’s sometimes hard to be called brave, how the show I performed in became my blissful escape from reality, and what it was like to share the news with my students. I share because it helps me process this experience and gain perspective on what this whole mess could mean. But there’s another reason, the one that led me to create this public blog rather than keep a personal journal. In the last few weeks, I’ve been blind-sided by things I wish I had known about earlier. I cobbled together advice from professionals and put one foot in front of the other, hoping for the best. I want to share because I found so few resources that I really needed. If putting these experiences out there into the world can help even just one person, it might, somehow, in some small way, be worth my own heartache. I could begin to alchemize this pain and these challenges into something concrete, meaningful, helpful, or even beautiful for someone else.
For now, I’m squeezing as much as possible in the space I have between myself and treatment. I’m seeing two Broadway shows this week, because why not? I have a list of errands to run and people to see. I will have plenty of time while I’m on disability to tell you more. (Trust me, I’m on day two of my regularly scheduled Spring Break, and I’m already a bit bored.)
Please know in the meantime that I’m okay. This has been unimaginably hard. But as I repeat to myself daily, and put on the letterboard in my kitchen a few weeks ago more with the intention of convincing than reminding: “You can do hard things.” It doesn’t always feel true. But I’m proving to myself with each step that it’s at least possible.
This is not going to be a fun post to read. It was not a fun post to write.
I had another scan this week. If you’re wondering what the results were, I’m going to politely ask you to read this entire post. There’s a reason, I promise.
My scan was on Tuesday, and Monday was an in-service day at work, which meant no students or classes to teach. “Scanxiety” had long ago set in and I was looking forward to a bit of distraction. I walked out of a meeting at 9:45 to find a voicemail from the radiology department of UPenn. The speaker informed me that my insurance company had denied my request for my MRI, which was scheduled for 9:00 the next morning. Furthermore, if I couldn’t get it straightened away by 2 PM, I would lose my appointment slot. I was floored: why was this an issue now and not when I made the appointment back in August? The shock quickly changed to panic. If I couldn’t make my MRI, my oncology appointment the next day would be pointless, and it would take me potentially weeks to get in again.
As I tried to reach the Nurse Practitioner with the Sarcoma Program at Penn, our HR person at work helped me reach my insurance company, since my case manager was not able to be reached. This insurance company put me in touch with a third party that does insurance authorizations and was apparently responsible for the refusal. The third party informed me that I already had an MRI on file and could not have repeat imaging done without winning an appeal of the decision. I finally reached someone at the Sarcoma Program on the fifth try an hour later, and the nurse assured me they’d work as fast as possible. It was 11 AM by now, and we were racing against the clock to get this so I could keep my appointment. As I bounced from phone call to phone call, 2 PM passed. Fortunately, my new best friend in the Radiology Department told me the Director of Radiology would extend the deadline, as the office was actively working to straighten things out.
Does it sound chaotic and stressful? Let me assure you, it was.
At 5:15, I got a call from the Nurse Practitioner that my scan for the next day was on. She shared in my frustration, as she had to reorganize her whole day as well, and apologized that I had to go through it. Then she shared the hold-up: the third party thought I was not currently in treatment.
I arrived early for my MRI. When I give my name at check-in, the receptionist sighed, “oh, I’m so glad your authorization went through!” (I guess my issue was quite well known at that point amongst the staff at the office.)
I went back to prepare for my scan get the IV for contrast put in. The tech remembered me from the last visit when it took four attempts to get a vein. I was embarrassed – was that my reputation there now? They got it on the first attempt this time, though they went through a vein in my wrist, which hurt whenever I moved in the slightest. I listened to Queen inside the machine, since I listened to Michael Jackson the first two scans, and I was looking to break my streak of bad luck.
I was ready for good news.
I stayed up as late as I could on Tuesday night and tried to sleep in late on Wednesday. My appointment was at 2:15, and I could feel my heart beating through my chest beginning around 9 AM. I did everything I could to keep myself calm and distracted: read, watch Netflix, even practicing hand lettering, which was widely unsuccessful with my shaking hands.
By the time I was ready to go over the bridge, I felt like I was going to get sick or burst out into laughter. At the start of my appointment, the nurse took my blood pressure, which was through the roof. I told her I anticipated as much and described how anxious I was about the appointment. With a wide grin, she said that I sounded like I was on speed.
A few minutes later, my oncologist walked in. He said my tumor was “the same.” Specifically and scientifically, it was the same in two directions, grew two millimeters in the third. I had prepared myself for two results: growth or shrinkage. I knew that if this thing grew, we’d opt for aggressive treatment. If it shrank, we’d stay the course. I hadn’t really thought through what it would mean if I basically got news.
My oncologist suggested another oral chemotherapy. I couldn’t help it: the tears started flowing. I’m sure it was confusing to my doctor; it was confusing to me.
Here’s the best I’m able to explain it: I had worked so hard to get myself comfortable with the idea of more aggressive treatment. I was ready to take time to focus solely on battling this disease and shrinking this thing that’s been only growing since I started treatment in March. (And yes, just a few millimeters still counts to me as growth.) To try a new oral chemo felt like starting back at square one. I was trading fatigue and nausea on one drug for fatigue and edema on a new one. He also shared that it would take six months to chart any change or progress.
I expressed my frustration: I was ready to shrink this thing, and I was discouraged and tired from 9 months of failed treatment. (Hearing that I was tired, my doctor offered that since Desmoids are so unpredictable, I could do nothing and see if it stayed the same on its own. That scared me even more.) It’s not that I wanted more aggressive treatment and the slew of side effects that go with it: I wanted change. And if it meant aggressive treatment to get to a place where I’d have some tumor-free years, sure, bring it. I was less afraid of change than I was of the status quo, of mediocrity, of more of the same. I understand and agree with his call, but it doesn’t hurt less.
The rest of the meeting was talking and listening and to be honest, I don’t remember most of it. What I do remember are the words that have been ringing in my ears ever since: “This could just be something you live with your whole life.”
It was terrifying to hear, but not because it’s the first time I’ve heard it. I’ve just never heard anyone other than the voice in my head say it.
In the Water
The reason I asked you to read this whole entry is that it’s long and frustrating and boring. It’s a glimpse into what my day-to-day life is like living with an incurable form of rare cancer. Despite my best efforts, no one wants to read about battling with an insurance company. It’s just not an exciting narrative.
Being on chemo is like treading water. You’re tired, it’s incredibly overwhelming, and at all times you’re aware there’s a chance you might drown. You see other people swimming perfectly and you’re unable to get into a rhythm. Sometimes you feel like you’ve gotten the swing of it, and others you’re gasping for air desperately trying to afloat. You’re aware that the sun is sometimes shining or the water is comfortable, but it’s not always a thought you can register. You ache for the ability to become buoyant and swim. Imagine then, treading water, while others swim by and tell you that you’re lucky that you haven’t drowned.
I’ve struggled with sharing these scan results and appointment outcomes. When sharing my scan results, I’ve frequently had people suggest other perspectives. I have heard things like “at least it didn’t grow,” or “well, you’re not heading into surgery.” These are both accurate and completely valid points, but it does not change how I feel, especially when sharing the news so soon after my appointment. I’m disappointed and frustrated, and I think I have every right to be. I hope to live well into my eighties and to think that I could be fighting this thing for over 50 years is devastating. I want to get to that place of optimism and determination, and I do think I will. But now, in all honesty, I’m just not. People often comment on my strength, and truthfully, don’t feel stronger than the next person. It’s simply not realistic to act strong all the time, either.
Right now, I’m not feeling strong, I’m feeling tired. I’m feeling frustrated. I’m feeling disappointed. I need some time to regroup and figure out steps I can take in the next few months to feel fulfilled and happy, chemo and all. I think I’ll get there. First, I need to figure out what that means to me.
Thanks, as always, for following along with my triumphs and challenges – and for your willingness to listen.
PS: For a helpful perspective on empathy from someone who studies it for a living, check out this short animation with words from Brene Brown. She’s got some great advice on what’s helpful and what to avoid when speaking with someone who’s facing a challenge.
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.
The past two weeks have been an absolute roller coaster. There were highs and lows- even a few actual nausea bags, thrown in for authenticity.
May 3rd – Setting the Bar Low
I had my root canal. Even though it was unofficially ok’d in a message, the oncologist’s office never sent the forms over to the dentist, so I spent 35 minutes playing Nancy Drew trying to find someone to write a letter stating I was approved. The office was none too pleased.
* This is an important thing to remember if you know anyone with any kind of chronic health issue: we spend LOTS of time on the phone tracking down doctors, paperwork from doctors, or obtaining authorization to see doctors. Please give us a pass if we get off the phone and seem irritable and/or frustrated.
Thankfully, my mom reached someone at UPenn around 9:30 and an official approval letter was sent via email. (My oncologist, who is great, later sought me out to give me an apology over email and in person. ) As soon as I let the staff know “the letter’s on its way!” they stuck the numbing QTip on and got to work.
The root canal was exactly as you expect it would be: painful and awkward. Let’s not spend too much time lingering on this event, lest we conjure up any memories of dental work past.
I left and was back at work by lunchtime to run a rehearsal for our fourth graders.
May 4th – Climbing to New Heights
I watched my fourth graders take the stage in The Lion King KIDS. Let me tell you, it was remarkable. (I don’t consider this a biased stance, because I had very little to do with it. The way I see it, if you do the right kind of work as a director, you mostly pose questions or considerations and run away, leaving the actors to find the right solutions.)
I mean, c’mon, look at these photos!
They made me very, very proud, and I was very, very happy.
May 5th – Still Ascending
May 5 was my 29th birthday. I checked on the DTRF donation page and was blown away. My little $500 goal had been met – seven times over.
I don’t have the email addresses for everyone who was generous enough to donate, nor the time to thank each of you as personally and as thoroughly as I’d like. Please believe me when I say, each and every donation means so much to me. I just don’t have the words to thank you enough for all you’ve given. I am eternally grateful and indebted to your generosity.
May 6 – The Peak
I threw myself a ridiculous unicorn-themed brunch to celebrate what I’d like to call the “Victory Lap” of my 20’s (aka, age 29). I wore an outrageous unicorn crown that I made, ate unicorn cupcakes and other rainbow-themed food, and felt the love of being surrounded by family and friends.
May 7 – Freefall
Overnight, I caught a lousy stomach bug. After a few hours, it passed, but I woke up feeling tired and irritable. I had arranged for a substitute teacher so I could take the day off work and attend a follow-up appointment with my oncologist.
On the way to the appointment, my Mom voiced her concern that my tumor appeared larger. I honestly have little way to gauge the size of it: I see it every single day. During my appointment, my oncologist agreed that it looked slightly larger. He agreed that I needed to get an MRI, preferably that week. The doctor also said I had a decision to make. Either stay on Nexavar if I could manage the side effects, find an alternative oral medication, or head to surgery.
This made my stomach drop. Really? We were still talking about surgery? The tears began to make an appearance when I told him, under no uncertain terms, did I want to try surgery before exhausting my other options. Thankfully, he wholeheartedly agreed. I decided to stay on my current medication and adjust my expectations for my lifestyle. I’ll take tired, sore, and nauseous over cut open, please and thanks.
The ability to hold to that decision, however, was contingent on the results of that week’s MRI. My insurance required pre-authorization on the request, and once that was in, I’d be good to go.
May 8 – Another Drop
Tuesday started as a normal day. I went back to work, had a normal breakfast and lunch, but by the afternoon, I was locked in a heated battle with my insurance company. They directed me to an outside company which handles authorizations, and that company rep claimed that they did not have the information needed to process the MRI request, even though UPenn had already sent over office notes. I then made numerous calls to both the authorization company and UPenn. It was infuriating.
*Remember what I said earlier? Please be patient with your family and friends who have chronic or severe health issues. They make these phone calls weekly, if not every day.
By Tuesday night, I was feeling tired and not too hungry. By midnight, that “not too hungry” became violently ill. This thing took hold of me by the ankles, shook me violently, and left nothing but the good sense to send a text to my mom.
May 9 – Leveling Out
My mom arrived on the scene by six AM, with cleaning products, Coca-Cola, Gatorade, and bread on hand. She gave me a bit of flat soda to make sure I could keep down liquids, then drove me back to my parents’ house where I could rest and not worry about taking out the dog on my own. (Valuable, as I couldn’t stand straight.)
I don’t remember too much about that day, other than my family taking care of me. I won that family lottery, in case I don’t say it enough.
The only silver lining of that day: I got an appointment for an MRI the next day.
May 10 – Beginning to Climb Again
I had my MRI. It was quick and relatively easy. I listened to some Michael Jackson on a Pandora playlist and held my breath when the technician told me to, and then it was over.
I kept down a few pieces of sourdough toast, some water ice, and by evening, even some rice and beans. (My sister, the insightful nursing student, stopped me from adding sour cream.) I got back to my apartment that night for another solid night’s rest before heading to school the next morning.
May 11 – Another Peak
What a beautiful day, right? I was feeling able to eat for the first time in a few days and put on my favorite dress to celebrate.
I kept myself busy while I waited for the phone call with the results of my MRI. At 3:30, as I was leaving work, it arrived: my oncologist confirmed there has been no significant growth of my tumor. (Cue the confetti!) He said while it may have grown a hair, it’s essentially still the same, so his recommendation was to stay the course with my current medication and get scanned again in three months. I happily agreed and said I’d see him for my monthly appointment in June.
For those of you without great calendar skills, three months of treatment puts me as due to be scanned in the middle of August. Other desmoid patients who have been treated with Nexavar have seen results between 6-9 months, so this scan might not show anything significant, which would still be OK by me. Let’s be real: is this truly great news? To a cynic, probably not. (I see your point, I’d rather not have this tumor, quite frankly.) But after the low bar of achievement was set, on top of thinking I was headed to the operating room, this was like finding out I had won the lottery.
Exiting through the Gift Shop
I’m still making sense of this whirlwind of two weeks. For now, here’s what I’ve got in hand:
A fundraising campaign that’s far surpassed all my expectations
Another musical production under my belt
Reassurance that my family and friends are not going anywhere
The knowledge that my tumor’s just fine, for the time being
This weekend, I think I will celebrate. My body’s not quite ready for champagne, so for tonight, it will be some of my other favorites: a great book, some self-care, and my pup at my side.
Did you know chemo can cause issues with your teeth? I didn’t- But now I do!
Because I need a root canal.
Here’s the scoop: I’ve had a spot of sensitivity since my last cleaning in December or January. (Who really knows when; it’s all a blur.) Then I got diagnosed, started my medication, and bam! Excruciating pain since last Friday. My oncologist advised me to hold off on my medication to see if it was a side effect. No such luck. I went to the dentist this past Wednesday. I was x-rayed and the proclamation was made: it was time for a good old-fashioned drill party. (But first, I needed my doctor’s approval and over a week of antibiotics to make sure an infection doesn’t occur.)
Evidently, when you are on my medication, it can cause dry mouth. Not a huge deal, but your saliva is actually a key player in making sure debris doesn’t hang out in your teeth for too long. (Everything bagel or not, all food needs some help.) No saliva leads to more hidden issues, which leads to more cavities. Or in my case, do not pass go, do not collect $200, get a root canal.
This Thursday, I’ll have my tooth root-canaled (is that a verb?), head into school to run a 1 PM rehearsal, then hopefully get cleared to start my medication again.
By the time I get started again, I’ll have been off my chemo meds for about two weeks. That doesn’t seem like a lot, but even if my tumor hangs out and doesn’t grow in that time, my body already has no idea which way is up or down. Right now, it’s having a full out MTV Spring Break of a time. “No medication?! Awesome! Here’s your energy and appetite back! Go wild!” Next week, I’m anticipating a bit of a challenge as I get acclimated all over again.
I’m trying to think of this as less like a road block and more like a detour. I have a lot of great things to focus on: the astounding progress we’ve made with the DTRF Fundraiser, the great retreat I went on this past weekend, and a musical opening this Friday that I’ve been working on since November. I’ll be honest though: even when I feel Pollyanna about it, I’m still in more pain than I’d like and have developed a borderline addiction to Orajel.
The moral of the story: if you have a diagnosis like mine, even when you brush and floss, expect the unexpected. The detour will arise inevitably. Best advice I’ve got at this point: pack easy-to-chew snacks and have people you like along for the ride.