January 31, 2018
I didn’t know it when I took the photo, but my life was about to be turned upside down.
I sat waiting in the office of a Thoracic Surgeon with the University of Pennsylvania, number six in the line of doctors I’d seen about the swelling near my collarbone. I had grown restless and annoyed as I waited. He was late, and I was already reeling from the radiologist’s recent assessment: a hematoma, caused by my surgery three months prior.
I took a very ridiculous, very unflattering selfie, (the one seen above), as I have done more than several times. In an effort to break up the silence and my own irritation, I sent it across the room to my mom, who had insisted on attending. A few friends offered to come in her place, but being the World’s Best Mom, she felt better being there, just in case.
Over an hour passed. Finally, the doctor came in with a nurse practitioner, shook my hand, and started to speak. Not particularly quickly. Nothing different in his tone than as if he were explaining how something worked in a piece of machinery; say, a car. But he had a lot to say. He explained that as I waited for the past hour, he had been trying to reach a radiologist he trusted to look at my scans. The radiologist didn’t feel it was a hematoma at all.
And then he used the word sarcoma.
He kept talking. No one moved or made any sounds, as though we were listening to a discussion about someone else’s life. I stopped him. “You said sarcoma. Are you telling me I have cancer?”
I don’t remember his response.
The room didn’t spin. The floor didn’t tilt, my legs didn’t give out from under me. Everything was unnaturally cold and still. I excused myself and rushed to find a bathroom, where I let out a wail that was more animal than human. There were no tears, which felt fair. How could there be enough tears to match the scale of the news I’d just received?
A few moments later, I let myself back into the room. There was a lot of talking. My mom was asking questions, writing down notes, furiously springing into action. There was a folder passed to her with handouts and phone numbers of places to call. The words biopsy, MRI, and catscan were used. Not knowing what else to do, I made a joke about having a team now. My mom drove me back to my parent’s house.
I don’t quite remember the rest.
I know that at some point, I sent texts to a few friends. I told my boss the news and that I wouldn’t be in for the rest of the week. In the coming days, I collected medical records from various doctors. I went to the Perelman Center for the first time and had an MRI, a catscan, and a core needle biopsy done.
I waited. Days passed.
I went to the movies and saw The Greatest Showman. I watched the previews and wondered if I would be alive when the advertised movies opened. I slept when I could, ate when I could. Monday came. I went back to work, because I didn’t know what else to do. I told my coworkers all at once, in a meeting, because it was easier than facing whispered speculation or fearful yet compassionate glances in the hallways.
One memory stands out from the rest of the rest, crystal clear in its detail. It was late, and I stepped outside to bring my dog out. It was cold, but quiet and calm – so much so that even the frosted tufts of my breath seemed too garish for the evening’s simple beauty. The moon was bright. I remember looking up and thinking, if this is it for me, I could be okay with that. I was loved by the most wonderful friends and family anyone could ask for. My profession fulfilled me personally, professionally, artistically, and spiritually. I enjoyed too many adventures to name: singing with a jazz band, training with a circus, walking 500 miles from France to Spain. I loved and had been loved. I certainly want to stick around, but if I had no say in the matter, I held the knowledge that I had done the most with the time I have. Peace- quiet and small yet strong- settled somewhere within me.
More days passed. Valentine’s Day came and went. And on February 15, I finally got a call with my diagnosis: fibromatosis, desmoid-type. A google search said it wasn’t cancer. I called my thoracic surgeon and my nurse. They kindly replied that while google might say that, it very much acted the same way and needed to be treated as such.
The rest is a blur.
January 31, 2019
It’s been a year: 525,600 minutes, for any Rent fans who may be reading this. Those movies I saw in previews have long ago opened and closed. I’m still here.
There have been times where I have felt forgotten, that I cannot convince people to take me seriously, or that I have every reason in the world to despair. At other times I have felt guilty, that others have it worse, or that I am making a big deal out of nothing. My life has never been harder. It’s also never been filled with so many reasons to hope.
I’ve been shown the kind of immense generosity, kindness, and compassion that pops up in occasional news articles about goodness in the midst of tragedy- the type I’d read about and believed in but never experienced firsthand. I received cards, messages, kind words from people I have never met. In eight months of fundraising, you’ve donated over $23,000 for the Desmoid Tumor Research Foundation.
When I last wrote, it was with the news that I was trying another oral chemotherapy called Gleevac. Unfortunately, it did not work out as I was unable to tolerate the side effects. I put on ten pounds in two weeks. My face was so swollen in the mornings my eyes could barely open. My joints and muscles ached and my pain skyrocketed. The day after Christmas, I was taken off of it, fearing that the treatment could have actually made my tumor grow. Fortunately, once off of the drug, my pain improved. Better still, a scan done two weeks ago showed that my tumor did not grow. It remains “mostly stable” with “small amounts growth.”
I’m at a crossroads with treatment once more. While stability is in many ways good news, it’s not shrinkage. My tumor is still close to my brachial plexus. It’s taken my pectoralis major, my clavicle, and two of my ribs and pushed a lot more out of the way, rendering my shoulder area unable to operate as a healthy person’s shoulder would. My pain has increased. In order to finally shrink this tumor, now the size of a grapefruit, it’s looking like aggressive treatment will be necessary. I haven’t made any decisions yet. I’m taking time to meet with more doctors and make the decision that’s best for me, my health, and my life. I do not have any updates yet.
What I do have is the thing I once feared most I would lose: time.
I’m calling today my Cancer-versary. I’m not quite sure what one does to celebrate a Cancer-versary, so I’m making it up as I go. I bought myself flowers and took the day off of work, my first personal day this year. I spent the morning snuggling with my dog; I think I’ll read and make cupcakes later.
With the chaos of the past several weeks and an indeterminate plan for the future, I didn’t really know how I’d feel leading up to today. Now that it’s arrived, I mostly feel what I did that night I stepped outside under the bright, beautiful moon: I’m thankful.
Thankful for my mom and dad, who have shown me the true meaning of unconditional love, and who would (and have) done anything possible to make my life easier.
Thankful for my family, especially my brother and sister, who take the time to check in on me during their full lives and have been there every step of the way wanting to know how they can help.
Thankful for my friends, who, when it’s hard to know what to say, let the silence sit between us without judgment, and who provide a steady stream of photos, memes, and stories to keep me laughing.
Thankful for my coworkers, who offer their unflinching support and always say yes to any of my requests for help.
Thankful for my students, who give me reasons to smile no matter how I’m feeling and whose innocence, empathy, and love remind me what’s truly important.
Thankful for my medical team and the Desmoid Tumor community, who have embraced me and guided me through this terrifying maze with a voice of resilience.
I’m thankful for being here and for having so many reasons to fight.
“With all its sham, drudgery, and broken dreams, it is still a beautiful world.” – Desiderata