September is one of my favorite months. Here we are, three fourths of the way into the year, and we get to start over again! Fresh. There are crisp white lined notebook pages read to be filled, perhaps the chance to get a few new outfits that make you feel a little extra shiny. As Joe Fox says in You’ve Got Mail, “It makes me wanna buy school supplies. I would send you a bouquet of newly sharpened pencils if I knew your name and address.”
This month is also an important month for me because it is Desmoid Tumor Awareness Month. Since 2018, I’ve done my hardest to use this year to educate folks about the reality of this disease while also trying to preach hope. I’m drawing from two different and real feelings.
This year, that’s the place I’m coming from. Reality and hope. I have one foot firmly planted in the pain, exhaustion, and fear of the last year, and the other planted in the hope this new trail drug offers me. It’s pain and progress in equal measure.
I humbly ask that if you are so able, you would consider a donation to the Desmoid Tumor Research Foundation. There are so many places you could generously offer your money, especially in a time when so many have lost so much. What I can promise you is that every penny of that donation goes to fund research for patients like me – because they already have!
YOUR DONATIONS have brought education to pathologists who now know how to more carefully observe confusing biopsy tissue under a microscope.
YOUR DONATIONS have resulted in a consensus paper, the first of its kind, to guide unfamiliar doctors worldwide in the treatment of this rare disease.
YOUR DONATIONS are funding research grants for motivated medical professionals to unlock the secrets of this disease.
Let me tell you more about why this cause means so much to me in this video.
This year, the DTRF chose not to hold its largest fundraising event of the year in person in order to protect the most vulnerable among us. I respect and stand by this decision 100%! What it does mean, however, is that we are drastically behind on fundraising. We usually count on your registrations to fund projects and that’s simply not possible this year.
So please join me in donating to this incredibly important cause! It’s needed now more than ever.
I have been waiting months to write this blog post – eleven to be exact.
I am finally back in treatment, and this time, it’s something entirely new… so new that the FDA hasn’t even approved it.
Three weeks ago, I started an oral chemo called Nirogacestat. It is a drug that is somewhere in the phase two or three with clinical trials. I had previously not qualified for this trial because my tumor had not grown “enough” in the previous year. Last August, after my liver enzymes rose to meteoric heights thanks to Votrient, my oncologist mentioned receiving the drug through something called compassionate access. Compassionate access, also known as expanded access or compassionate use, means that I’d be able to secure the drug without the study. The benefit would be that I’d receive the drug without the possibility of it being the placebo.
There were so many countless hurdles and many tearful nights I spent waiting for the access to be secured. It meant that my oncologist had to write a protocol specific to me: which, fortunately, was not too hard, since he had patients in the trial and was able to use that to start. After that, the protocol had to go through the Penn IRB, which is basically the ethics board at UPenn. Then it had to go to the Food and Drug Administration for approval, at which point it would then be approved and I would be able to start. I chose not to tell most people what I was awaiting, since I am superstitious when it comes to moments like this.
I experienced so many stops and starts with this drug. COVID held up everything, as it is wont to do. I got a notice the week of my birthday in May that I’d be receiving a call to schedule my first appointment. I was over the moon and called my family and let my friends know. Then there were some snags, of course. Turns out the pharmaceutical company changed the packaging to include 100 pills instead of the previous 90, so the whole protocol had to be reissued to the IRB at Penn. I was then able to sign the all-important consent on June 21, but of course, I ran into even more hurdles.
I needed to have a baseline MRI completed, and as my medical insurance changed, so did my coverage. While my oncologist at Penn was still covered, radiology was not. I needed to schedule with an outside provider. While that was not the hard part, the provider did not accept digital scans. I needed to be the carrier pigeon: going from Penn to the radiology center in New Jersey, then the radiology center the next day back to Penn. It added about 3 days overall to the process, which seems like ages when you’re awaiting results. Thankfully, my tumor is overall stable-ish (it’s only grown a bit).
Finally, on July 14, I took my first dose at Penn. I wore a tshirt I made with the help of a friend specifically for that occasion reading “je suis prest,” or “I am ready” in French (old French, as many soon pointed out to me.) It’s the motto for the character of Jamie Fraser in Outlander, a series I devoured while awaiting the next phase of treatment. I’m experiencing a lot of the same side effects I’ve come to know from previous treatments, so it makes it easier to manage for the most part.
So here I am. It’s August and I’m taking a social media advocacy break, but I wanted to share with you the latest and let you know I’m still alive and kicking. Hopefully the next swift kick will send this tumor packing.
I remarked to someone back in June that if I were offered a pill that would allow me to fall asleep and wake up in 2021, I’d do it.
I stand by that decision, here in late September, and would probably still take that pill today. But maybe I shouldn’t rush to judgement. I would miss moments like yesterday.
A few weeks ago, I was given the go-ahead by my oncologist to attend appointments I’d postponed in the Spring, the usual things like the dentist or a check up that can’t be accomplished via telemedicine. I went to see one of my favorite practitioners. I only see her about once a year, but she has the way of making me feel so comfortable in her presence. Either she has a spectacular memory or takes really good appointment notes- regardless, she always seems to remember me and ask me about specific details of my life.
She walked in yesterday to my appointment, masked but still bearing the hallmarks of a smile in the crinkle in her eyes. She immediately commented on my hair and how much she loves it. When I told her the whole story- drug side effect, etc. – she leaned in closer to part my hair with her fingers, like you’d play with a friend’s hair.
“And how are you doing?” she asked.
“I’m okay.” I replied.
Furrowing her brow, she lowers her chin and looks at me more intently. “Just okay?”
I was open but brief about some of the chaos swirling in my mind, in particular, how the pandemic has exacerbated it all. How careful I’ve needed to be. How it’s been six and a half months with just being poked and prodded by doctors, no real spirit-affirming human touch. She is present the whole time. Listens, looks me in the eyes, shares her care and empathy with me. The appointment gets under way. Before I know it, she’s telling me something about her dog and her husband and we’re both belly laughing.
We wrap things up and she goes to the door to leave. I thank her, and with no warning she pulls me into a tight hug. I managed to choke out an, “oh, thank you,” and I take a deep breath. “One of my first hugs since March,” I manage. She squeezes me tighter. Her sweater is warm and soft, her tiny frame unexpectedly powerful. We smile at each other as she leaves. As soon as the door clicks behind her, I burst into tears.
The only quarantine hug I’d had prior was a surprise hug in August from my best friend’s daughter. We were eating brunch outside on her lawn, when without warning, her three year old enthusiasm could not be contained. With lightning speed, she rolled over the grass several times onto my picnic blanket, and wrapped her tiny arms around my lap. Knowing how careful I’d been, my best friend looked at me in horror. In an opposing response, I felt my body soften. This hug, so unbridled and joyful, sent waves of calm through my body as I tossed back my head and felt a laugh escape. I rubbed her back and looked into her smiling face. I assured both of them it was ok, it was a special treat. This hug from my doctor felt the same. I could sense the impulsive quality in her embrace, the insistence that this was the only right thing to do.
I am absolutely sure that I would have refused the offer of a hug yesterday, just as I would have cautioned my best friend’s beloved enthusiastic toddler. But once it was underway, I during I didn’t think of risk. I didn’t think of particles or statistics. I didn’t even hold my breath. I deeply inhaled and exhaled. Most assuredly for the only two times in about 200 days, I let myself soften.
Back in the exam room, I pulled myself together. I wiped my eyes with a tissue, readjusted my mask. As I walked down the hallway towards the exit, I heard my doctor with her next patient, laughter just dancing on out through the bottom of the door. What a remarkable thing, I think, to know where your doctor is by the sound of joy she creates in her presence.
Medicine is hard. Being a doctor is hard. Being a patient is hard. Being a human is hard.
Ten, twenty, thirty years from now, I will remember that moment when my doctor saw me not as a patient, but as a person. And it is my hope that when I can safely hug people again- with reckless abandon- I can convey the expansive compassion that was shared with me in that one moment of humanity.
I agonized over this decision for weeks. Since May, Votrient had made my hair grow in with a lack of pigment, and that meant that it wouldn’t take any dye (I tried.) It felt sad and limiting to cover my hair up all the time with the same two headbands that were comfortable enough and felt fashionable. My scalp began to hurt more and more. The initial sting of my realization had settled into a dull ache, one I was reminded of each morning as I got ready for my day. Why was this sitting so heavy on me? What was the real issue here?
I sat down to journal and get to the bottom of it.
Here’s what I found: I was afraid simply because it was something I’d never done before, and I had few examples of what that would look or feel like. And beneath that, I was tired of needing to be brave all the time and constantly fighting to meet other people’s expectations.
The words that came to me (truly, that sounds like something out of the Old Testament, but it’s the only way I can describe it) were these: you don’t have to be brave enough for all of it. You just have to be brave enough to do this one thing. The rest can wait.
I knew I was brave enough for this.
I picked the night of the full moon at the beginning of August, since it traditionally represents letting go. I watched Sweeney Todd the night before for a bit of wry humor. I put a few woo-woo earthy items in the beautiful wooden bowl a friend made me: safe, aquamarine, obsidian, and cowry shells. All these were suggested in an episode of Queer Eye when a man was shaving his dreads. (And if it’s good enough for JVN, it’s good enough for me.) My friends Dominique and Dave sent me a pair of clippers from amazon, which I affectionately named Greased Lightning due to the lightning print on the side. I called my friend Alex for moral support. I sectioned my hair into ponytails. When it came time to the cutting itself, I put on Aretha Franklin and got to work. After the first few big cuts, it became easier. That night, I enjoyed the summer rain on my newly short, 7/8 of an inch hair.
Now you see it…
Now you don’t.
It’s important to acknowledge how lucky I was to make a choice. Most people with cancer don’t. It just starts falling out and then it’s time, or to save the grief later they shave it off before it gets there.
And the story continues. Since I’ve been off of Votrient for my sky-high liver enzymes, my hair has started to grow back my natural color. (Dark brown: which many of you, readers, having seen me grow up, probably already knew!) I’m starting to look like I have weird early 2000’s frosted tips. But I would make this decision again every day of the week and twice on Sunday. That day, I took back my control. I’m reminding myself daily that femininity does not depend on long hair. I’m playing with new hair accessories and enjoying a short prep time in the mornings. I’m feeling like more of a badass, if you’re looking for honesty.
And in 2020, who doesn’t need more of that energy?
The last time I shared an update with you was March 12. I didn’t know then that the day before would be my last normal day for the foreseeable future. I wish I had taken a moment to savor the hugs I gave my aunt and uncle as I left their house. I wish I had enjoyed being mask-less a bit more. The list can go on and on… but what it comes down to is that COVID descended on the East Coast and has yet to ease its grip on our reality.
There are a few markers of time passing. I started a new oral chemo, Votrient. I went back to work via remote learning. I directed and edited two virtual productions. I had another birthday. I was a keynote speaker at CancerCon. I started leading two online summer theatre programs when school ended. I directed and edited another production.
It’s been almost five months. 147 days of worrying about loved ones. 147 days of relying on others for my groceries or food delivery. 147 days of no physical touch with another person, aside from being poked at for an MRI, lab work, and blood tests. 147 days of calculated small risks. 147 days of wondering when it will be okay to ease up a bit. 147 days of a pit in my stomach named Pandemic taking residence next to another fear: Cancer.
These two overwhelming, enormous sources of fear, anxiety, and change reside next to one another. In all these days that the country been watching the maps change color and numbers rise and fall, I’ve also been monitoring my own non-COVID health. After being on Votrient for 16 weeks, my liver enzymes decided to spike quite high. I was taken off of the drug three weeks ago, and they’re still climbing. An ultrasound came back normal, but the cause remains a mystery. I’m trying to figure that out with my care team now.
I don’t have anything new or exciting to say about COVID-19 that hasn’t been said already. But I do want to explain that for those of us who are immunocompromised, we are at once strangely adjusted to this reality of washyourhandswatchforsignsandsymptoms and also purely terrified of it. Just as I was ending my time on disability, COVID came along. I’ve been on some version of high alert since March 28, 2019 when I had my first chemo infusion… really, I never left.
Especially at first, as others were expressing their discomfort and fear, I was a resentful. “Oh, you feel cooped up in your home? Lonely? Separated from others and fearfully protective of your health?” I had been there, done that, and so often felt completely forgotten. With all that still going on, COVID specific fears settled in to say. When I look at back to school plans, I grow sick to my stomach. I struggle when others’ definitions of “being extremely careful” are vastly different than mine. I grow angry at the selfish so-called patriots who see mask wearing as a limitation on their civil liberties instead of a tool to shorten the lives of others. I often feel that I’m spinning plates: got to keep my own personal health plate spinning, and also be vigilant about COVID, and think about being a living breathing human besides all this, lest all three come crashing down.
So while I have nothing new to say about this virus, or this experience really, I do just want to drive home: those of us with chronic health conditions are not new to this. We can be your sherpas in some ways. (We discovered Netflix Watch Party first, for the record.) But for the very same reason of personal experience, COVID is hitting us in profound ways.
Be patient with us. Understand when we say no to arrangements that challenge our comfort levels. Listen to our very real fear and anxiety, without pushing it away with platitudes. Ask how we can still spend time together.
I want to believe that this pandemic is going away sometime soon. I don’t know how true that is. Regardless, let’s practice being human and kind and understanding and generous with one another. We could all use some more of that.
I had my eighth round of chemo yesterday. It’s a curious thing: I could be one away from being done, or I could have five more to go. It’s anyone’s guess.
Since the beginning of April, I’ve been out on disability from work. It’s been great to rest, and I know there’s no way I could be the teacher I want to be while on doxil. It’s also incredibly isolating, quiet, and full of different kinds of grief. While the world outside continues, I’m here.
I want to share that today, but not to evoke pity. If you’ll allow me, I’d simply like to tell you a story.
A History Lesson
I once had the great fortune to visit Prague. It was a city that I chose with a few friends at the time because it was affordable. We were studying abroad in London with a month or so under our belts, and with two more to go, we were feeling the sting of the exchange rate. My Europe on a Shoestring guidebook by Lonely Planet raved about Prague, and it had never before steered me wrong. So, like only four 20-year-old college students can, off we went.
I didn’t expect to be so taken by this city that held no prior emotional, whimsical, or cultural significance in my life. I have no Czech heritage, never daydreamed about walking its streets, and it was only the night before we left that I thought to google some simple phrases, like “hello,” “goodbye,” or “one beer, please.”
Prague, the destination that was chosen by my wallet became one that won my heart. The St. Vitus Cathedral was one of the most beautiful, warm traditional places of worship I’d ever seen. There was the Cross Club, a mind-bender of a nightclub made of found objects like bicycle parts, train cars, and computer hardware. And then there is smažený sýr, one of the most indulgent food trunk specialties one could ever hope to encounter. Basically a gigantic puck of a mozzarella stick, it’s served on a hamburger bun with a specialty sauce and is the perfect food to round out an evening of adventure. Next to hearing the Czech Philharmonic and seeing The Marriage of Figaro at the only remaining opera house where Mozart himself conducted – smažený sýr was the peak cultural experience I had.
On one of our first days, we arranged to take a free walking tour of the city, where the tour guide walked us to many of the city’s most beautiful and celebrated monuments, like the Astronomical Clock. The tour guide addressed what so many of us had been wondering: if so many great minds flocked here en mass at one point, why didn’t we know about Prague in 2009? Why did this artistic and philosophical center, this “Paris of Eastern Europe” stop its growth spurt? I’d come to find the answer was fairly obvious and could have been answered by the slightly outdated map in the back of my elementary Social Studies textbook: communism.
Before the Velvet Revolution in 1989, and the separation of the Czech Republic and the Slovak Republic in 1993, Prague was part of Czechoslovakia. So for 45 years – from a coup in 1948 until democracy in 1993 – the country was ruled by a single ruling party. (Keep in mind that prior to that, it weathered Nazi occupation in WWII, and nearly a million and a half Czechs fought in WWI before that.) While the rest of Western Europe went on to rebuild after two devastating wars, Czechoslovakia couldn’t. It stifled by the limitations of Communism.*
*I feel it necessary to interject that these thoughts are mostly from our tour guide, and these facts are mostly from Wikipedia. Comrade I am not, but I do find capitalism to have its evils. I digress.
As the rest of the world tried to make sense of the wars it had waged, had a baby boom, and struggled to start life again – Czechoslovakia remained under a bell jar. Life continued, of course, but it was vastly different. Free speech, even in one’s own home, was a pipe dream, as the government frequently planted bugs in private residences. Authors had their works banned if they did not conform to party ideals. Actors and directors were not permitted to participate in productions. The spirited debates and artistic expression which were the mainstays of Prague cafes, stages, and opera houses became stale with the same message over and over, for the benefit of the party. It’s hard to fully communicate the mark left by Communism on the Czech.
In an effort to bear witness to this part of its history to future generations and visitors, Prague has many statutes in commemoration of different aspects of the Communist era. There’s the Memorial to the Victims of Communism, a series of bronze human sculptures on descending stairs that appear to wither away before your eyes. A plague shares the rough estimates of the total number of victims: “205,486 arrested, 170,938 forced into exile 4,500 died in prison, 327 shot trying to escape, 248 executed.” A smaller sign nearby states: “The memorial to the victims of communism is dedicated to all victims not only those who were jailed or executed but also those whose lives were ruined by totalitarian despotism.”
And then there’s another monument, on the top of a hill. It was erected in 1991 in the same spot where a monument to Joseph Stalin once stood. It’s a 75 foot tall metronome.
When democracy was finally restored, there was much work to be done. And the people not only wanted to build a monument to victims who were killed, but that one great equalizer: time.
A Monument
Blessed are those who ‘still aren’t over it yet.’
– Benediction at the memorial for writer Rachel Held Evans
Time soldiers ever on, insistent, indifferent. It does not waver from its measured march, regardless of our crippling anxieties or exhilarating anticipations. Though we may interpret its constancy in relation to our own hearts, so much so that we believe our own measure to be steadfast, time is not elastic. It is concrete.
If there were ever a monument built to honor cancer patients, I would vote for a metronome in the style of the Czech.
The Czech citizens in charge of making that statue possible understood that those still living carried a grief of their own. As one of my favorite sayings in the AYA community goes, “survival is insufficient.” It is so, so necessary to remember the many folks we’ve lost to cancer. It is also necessary to remember those who are still here, trying to make sense of things.
Time is a struggle these days. I see strangers and friends who are dating, getting married, buying homes, going on exotic vacations, starting new careers, or having children, and when I do, I am completely and totally envious. I truly believe that no one person is without their struggles, public or private.
If I’m honest with myself, I know that I am not envious of their lives and successes. What I am desperately, agonizingly, painfully envious of is what my life could have been.
Had I never been diagnosed, I may not have found a partner by now, saved enough money for a home, or decided to have children. But the trajectory I was on was pretty damn good. Even if everything had remained exactly the same, more of that would have been better than what came next. That would have been enough. I was so deeply, truly happy. I was really, vibrantly healthy. The glow of health alone is so bright, truly, I am blinded from even remembering what my trivial problems were back then.
There was a Netflix series I watched for a while, and before it went down the drain in both quality and production, it explored the idea of multiple, real selves in parallel universes. It examined the idea that somewhere, there is a universe where you made a right instead of a left, taken that job you ultimately turned down, pursued that secret passion, and there’s a version of you that is still you, but living in a different reality.
Somewhere, at least in my brain, I can imagine a Christina who has never heard of a desmoid tumor. It’s like imagining Barbie in her Dreamhouse. She came back from walking the Camino, had a lipoma removed, and went back to work. She is living on her own in the apartment she worked so hard to afford, has the career she worked so hard to advance and is hyped on her own independence and good fortune. She makes time for adventures in other states and countries or in imagined worlds. She sings and dances on stage knowing only the faintest whisper of what despair can be.
That’s not the universe I’m in. And here, time ticks on.
As I try to simply put one foot in front of the other, matching its tempo, I wonder who I might be once the bell jar is lifted. And as I wait and hope for a chance to rebuild, I’m building my own monument, my writing, for people to see.
I didn’t tell many people I was getting a scan last Saturday. I felt like a broken record, always delivering the same news. As heartbreaking as it is to receive bad news, I always find it harder to share it. I wanted better results, and I knew how badly the people I love wanted them for me.
Which is why I am so, so very glad I don’t have to give you bad news today.
My tumor has begun to shrink.
It took 18 months since starting treatment, two types of oral chemo, and six rounds of IV chemo, but this thing is slowly responding.
Here’s the details: it shrunk .6 cm in one direction. It grew .1 cm in another and shrunk .1 cm in a third, so overall a net change of -.6 cm.
It is a small change and I don’t care. It’s the most measurable response I’ve ever seen! As one of my friends put it, it can’t shrink three inches if it doesn’t shrink .6 cm. Here’s the best part: I was told at my second opinion earlier this year that the hardest thing about desmoids is often breaking the pattern of growth/stability and getting them to start shrinking. Once they make that switch, some patients can eventually even come off treatment and continue to watch their tumors decrease in size. There is a lot of reason for me to feel hopeful about the direction my tumor’s taking.
When you have a disease like mine, it’s so hard not to look around you and wonder why you’re suffering while someone else is healthy, or why someone else didn’t make it and you’re still here. There’s a lot of searching for reasons. I don’t have any answers. I’m still a cancer patient, and I’m still in active treatment. I have an unknown number of rounds ahead of me. But the hope that this moment has gifted me is immeasurable. I finally know change is possible, and that’s victory enough for me. I’m going to revel in it for as long as I can, even if I don’t know why.
(But also, no one can prove that it *wasn’t* the fact that I listened to the Spice Girls in the MRI machine. You can bet I’ll be spicing up the life of my radiologist in three more months when I go back for another scan.)
Thank you so much for continuing to read along. I am so grateful for your love, prayers, and prayers, through thick and thin!
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
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!
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!
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.
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.
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.
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.
You know the saying: another openin’, another show, another injection.
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.
Girl Meets Cancer 