Tumor Humor: A New Year, Another Surgery, and My Same Messy Self

While on one of my recent annual cleaning purges, I came across a strip of photobooth pictures from my high school senior prom. It was nearly 10 years ago, but I vividly remember the excitement of the night. In the photos, I have my arms wrapped around several of my close friends as we goofily donned various props. Our faces are young—granted at the age of 27 my friends and I are still young—but I can’t help marveling at our adolescent selves. 

Less than a year after those photos were taken, a doctor would throw his hands up in the air and say I was his most difficult patient to diagnose. Two years later, I was told I would probably never be able to write by hand again; five years later, I would find myself tearfully begging a doctor to end my life through physician-assisted suicide—anything to silence my body that screamed in pain daily. It would take six years from the time those photos were taken (seven years from the first time I visited a doctor about my pain) before I finally received a diagnosis. Acromegaly: a rare growth-hormone-producing pituitary brain tumor was responsible for wreaking havoc on my body and my life.

As the mental health advocate, Glennon Doyle, often says, life is “brutiful”— both beautiful and brutal. Well, I’m pleased to say that these days, my life leans more towards the beautiful than the brutal. I simply cannot believe that I am not only still alive, but also genuinely living. Today alone, I laughed with a close friend, cried in my car, and screamed with excitement. What can I say? I’m just a pain in the ass, trying to have the full human experience ¯\_(ツ)_/ ¯. 

Each time I write these posts, it is because I am reminded of just how many people care about my family and myself. The constant act of relaying a doctor’s message or the latest medical protocol to my friends and family is something that I occasionally bemoan, and I often take for granted that it means that I am blessed to be surrounded by so much love and support. I truly believe myself to be incredibly lucky for all of the love in my life. 

I have had eight surgeries since 2017, and on September 1st of this past year, neurosurgeon Dr. Gary Gallia confirmed that I would need a second round of trans-nasal tumor removal, following my initial brain tumor removal in January 2020. Dr. Gallia’s words, I believe, were the following: “Given the complexity and extraordinary rarity of your case, I know any surgeon I know would be thrilled to take you on as a patient. Actually, our department head specializes in acromegaly—I know he’ll just be itching to chat with you”. Happy to be of service, Doc, now if only the gay Jewish women of DC felt the same way about dating me ;) 

I’ve been sick for a long time– long enough that it’s difficult to recall a moment when chronic illness did not impact every aspect of my life. However, since my first tumor removal, I finally have the ability to live a normal life. I began living independently once again, made new friends, and re-started dating. In fact, I even developed a tried-and-true 4th date rule—never tell a date that you have a brain tumor until the fourth date at the earliest. No matter how much you downplay it, it’s guaranteed to scare them away. Basically, if I’m going to scare off a date, I want to scare them off because of me and not because of health issues out of my control…and so far, yes, I’m pleased to report that just about every unsuccessful date I’ve had has been due to my own handiwork.

Luckily, where I lack success in getting a girlfriend, I make up for it in other areas. In the last three years I’ve found new activities that I love: bar trivia nights, drag shows, cornhole competitions, concerts, and most recently, I joined a book club. I even had the opportunity to direct a teen tour of 43 teens this summer–– and I had the time of my life.  

Unfortunately, my newly rediscovered zest for life only makes it that much harder to pack up my weekend bag, leave my beloved apartment, and sit in my childhood bed for weeks at a time as I recover from each additional surgery. On one hand, I am so lucky to have a life that I cannot wait to return to….on the other hand, like what the fuck, can a gal just catch a break? 

Let’s flashback to September 1st. We’ve gotten the news that I will be getting surgery number nine. Ok, cool. I already have plans lined up for nearly every weekend of the next two months, so I am eager to get the ball rolling and schedule a date. Dr. Gallia’s administrative assistant is quick to slow my roll and lets me know he’s already booked into November. 

Fall 2022 was a season of beautiful foliage overshadowed by medical roadblocks. I could not get a speciality MRI scan until October, and the soonest that I could meet with Dr. Gallia to hear about the scan results was mid-November. All the while, I continued my normal regimen at local hospitals in their oncology treatment centers. I was told to remain on standby in case there was an appointment cancelation that I could fill. In fact, in the weeks between early November to mid-December, I had 4 different standby appointments in which I received a morning phone call while in my DC apartment and was told that if I could make it to Baltimore by noon, I could have the open appointment. I still managed to attend concerts, compete with my cornhole teammates, go on dates, and spend time with friends, but never once did I leave the DMV area. At this point, I was terrified of missing a standby call and delaying the surgery. Let me tell you, maintaining a social life and being medically-bound to a specified geographic area is not easy. 

Eventually I got the results of my MRI, and we were devastated. My parents and I learned that my brain was filled with abnormally large amounts of fluid and that I was at risk of intercranial hypertension. A spinal tap was needed to determine whether I would need an additional surgery to insert a stent prior to having my brain tumor removed. It was a rough day, but one good thing did come out of the appointment; an official medical document verifying that I am indeed hilarous. After an appointment of cracking up Dr. Gallia, he actually specified in his notes that I am absolutely delightful. I really am amazing sometimes (see below for photographic evidence). Anyways, I digress. Luckily, my spinal tap came back with normal, but this still set the timeline back roughly three weeks. In between appointments for further CT scans, vision tests, bloodwork, anesthesiologists, oncology hematologists, and otolaryngologists, I also learned that due to the close proximity of my carotenoid arteries and thick walls of scar tissue, there is a strong likelihood of a post-op brain fluid leak. Potatoes, Po-tat-toes.  

By mid-December, nearly everything that needed to be ruled out as a risk factor had been, and the surgery that once seemed lightyears away was quickly approaching. I was more eager than ever to put this behind me, especially because I have concert tickets to Maggie Rogers in February,  and I need be at my best to fully experience the magic. Priorities, ya know? My brother-in-law jokes that for the four surgeries he’s been oh-so-lucky to be present for, it astounds him at how wildly unprepared I am for the recovery process. For reference, I’ve had over three months to prepare for this procedure and if you ask me a single technical question, I’m probably just going to shrug since I rarely take the initiative to learn the answers for myself. The way I see it is that I’ve lost far too many years to this disease and refuse to let it take up even so much as another minute of my time. 

We are now about 36 hours out from the surgery, and I am antsy because it’s not just me who has a life to live. My parents, who are infinitely cooler than me, most certainly have better ways to spend their time than sitting through hours of appointments, researching specialists, filing insurance paperwork, and speaking with hospital administrators. Even my cat, Shadow/Shay/Shaydo Potato/Tater Tot is experiencing emotional support animal fatigue. Just kidding, he’s obsessed.

We’re all eager to regain our own quirky version of normal, which for me right now means reveling in the happy memories captured in old prom photos that I have not seen in years. While it’s hard to look back and reconcile all that’s transpired in the last decade, I know that I still have so much to look forward to. I ended up tossing quite a few things (tell me why I bothered to save an old notebook from AP Human Geography?) during that closet cleanout. But I kept the photo strip from my prom night. It’s actually packed in my hospital bag as a good luck charm. I look at that face of the old me, and I have such compassion for the girl that I was. If I could talk to her, I wonder what I would say. Would I keep it light and tell her to trim the dead ends of her hair? Would I be serious and tell her that the tough times will be temporary? Or would I simply just tell her that while her life will look nothing like the one she imagined, that one day, she’ll have the opportunity to dance so hard at concerts that she’ll get a cramp in her side, she’ll be comically awkward on just about every date, and she’ll adopt the sweetest senior cat? I think I would just tell her to hug her loved ones more and be a little nicer to herself. She probably wouldn’t listen to any of it. Let’s be real—I’m nothing if not a stubborn pain in the butt :)