Cancer Story: Part Two.
My family all thought we were in the clear with tumor recurrence until the summer prior to my Freshman year at St. Louis University.
I was so excited because my mom and I agreed that if this MRI was clear, we would ask Dr. Park if we could stop the testing. Four years of radio silence gave us a false sense of security and confidence, which always leads to fun and unexpected plot twists. Post MRI, we found our first reoccurrence: two more ependymoma tumors in my lumbar spine and one tumor on top of my sacral spine. I was crushed, wanting to enjoy college life and not deal with the stress of my parent’s worry, the anxiety of what was going to come, and the pain of the upcoming surgery and radiation.
Prior to this surgery, I remember looking into the bedroom mirror and admiring the curves of my back. The back of a woman is so sensual and sexy, curving down from the shoulders to the hips. I currently had a small 4” scar on the bottom of my back, but I still had that sexy female conture that dipped down to the top of my ass. I loved that line, and remember thinking how much I would miss it, and how my back would change from sensual to warzone; from soft to hard.
Another 6+ hour surgery and another time my dad shakily asked me to wiggle my toes when I woke up. Despite the paralyzing pain, they moved and we all sighed in relief. Since this was our first reoccurrence, Dr. Park insisted that lower lumbar radiation was necessary and new research had indicated it was extremely effective for ependymoma tumors. Post surgery, mom scheduled a six-week adventure at Siteman Center, where I went every day Monday-Friday at 9 a.m for radiation of my lower pelvic region, but not prior to discussing fertility preservation.
Again, I was too young to understand the implications of radiation and the long-term effects I was facing for fertility, digestion, and skin damage. My mother was an ER nurse, and always ensured I had the best care and options available. She advocated for me when I was too young to know how I needed to advocate for the best possible outcomes. One of those things was my fertility, and protecting my ovaries from the radiation field. We researched and found that Dr. Sherman Silber was just starting his revolutionary ovarian tissue removal surgery. He removes an entire ovary, shells it (the eggs are all on the outside), and stores it in cryo until you are ready for re-transplantation. My ovary currently is resting in the freezer until I am ready to re-transplant in the future, thus preserving my options of potentially having children!
My first day of radiation, my nurses tattooed me with five dots to mark my exact position for the machine’s beams. I have always wanted tattoos, but I remember crying with my nurses because those tiny polka-dots hurt so bad. Now I laugh-out-loud thinking it couldn’t have possibly been THAT bad. Six weeks flew by, with minimal side-effects, and by the time I was done, it was time for my freshman year at SLU.
A few months passed, full of wild freshman year decisions, theater extravaganzas, and entry-level business classes, and I had a follow-up MRI to assess the spinal column post-surgery and radiation results.
Going back to my type of tumor, the ependymoma is a Central Nervous System tumor that originates and grows in the spinal cord and/or brain and has unknown origin. There are three grades of ependymoma, with Grade 1 and 2 being more slow-growing and considered benign, while Grade 3 develops extremely fast and is considered malignant. When you are diagnosed with this tumor, your MRIs and testing will usually involve looking at both your brain and your spinal column to maintain health.
For my millionth follow-up MRI, my parents and I were told there was a “shadow” in my upper thoracic spine. I was still too young to advocate, with no knowledge or research to fight back the diagnosis with. My doctors told me it was best to attack my newest growth with an intense chemo-therapy round of IV drugs and long hospital stays. My parents immediately agreed, wanting this story of recurrences to simply end.
My first chemo-round was a week prior to Christmas. Each time, it would be 5 days in the hospital, with a different drug dripping from the IVs into my body, effectively killing everything that lived inside of me. I went home on Christmas Eve, and remember sleeping all day Christmas over at my grandmother’s house, zoned-out and fatigued.
My nurse practitioner was both hard and soft, as you would have to be when working with sick children. She gave her love in a direct onslaught of authenticity and straight-forwardness. I remember asking her if I was going to lose my hair. I was only 18 and had long, thick blonde hair that I absolutely loved. She looked at me like I was a dumbass and gave me a flat “Yes”. I went to my hairdresser prior to chemo, and for the first time ever, cut 16 inches of my hair into a chin-length bob.
On New Years Eve, I woke up in the morning and looked at my pillow. I had strands upon strands of bright blonde hair laying scattered over the sheets. My stomach dropped as I ran into the bathroom and looked into the mirror, lightly tugging my hair as it came out huge chunks into my hands. I was devastated, and morbidly kept pulling it out while I sat on the toilet crying. I lost every strand of hair on my body, except on my legs (#WTF).
After my initial shock, my dad looked silently drove me to go see my hair stylist, armed with my red beanie and big crocodile tears. At the salon, I was hysterically crying while my beloved hair-dresser washed my hair one last time and then took a buzzer to my head. I remember thinking that every woman in the salon would be thankful for their haircuts that day, no matter how bad they turned out.
For the rest of the month, I was incredibly sick. I went from a solid muscle mass of 150 pounds down to under 100 lbs. I couldn’t eat anything without vomiting, I was nauseated 24/7, and I slept all day long. I would play World of Warcraft to pass the time in my drugged-out haze, or sit and laugh along with every season of Friends, one of the only shows with lightness and laughter.
My dad was worried that I couldn’t eat, and had to keep going to the hospital every day for platelets and blood transfusions, so he did his research into alternative remedies. He joked around one day that he would go to a street corner and just buy marijuana so I could eat without throwing up. We eventually were able to get a medical marijuana prescription, and on my first dose, I looked over at my dad in his la-z-boy and asked if I could have pickles and chips and salsa. He laughed so loud, and proudly exclaimed “my daughter has the munchies”.
Welcome to my first experience with drugs people actually want to do…
After two months of IV chemo-therapy and on the verge of kidney failure and a loss of hearing due to Cisplatin and Vincristine, my doctors performed follow-up testing, and saw that the initial tumor they saw in my thoracic spine was actually just a shadow. I was immediately taken off chemo, had my port removed from my chest a month later and I was set up with a lawyer for taking further steps into a medical malpractice lawsuit. I learned then to advocate for myself, question such “obvious” results, and not blindly trust only one medical perspective.
Needless to say, the trending MRI results continued. My follow-up scan was three months later and we found my first brain tumors, one attached to the brain stem and three in the cerebellum. Despite the grade 2 level, and the slow rate of growth, we were worried about the tumor on the brain stem, and decided to go through with brain surgery on Halloween, followed by a low-dose, long-term chemo clinical trial.
After a ten hour surgery, and a two week hospital recovery, I left Children’s hospital barely able to walk. My toes barely wiggled this time, and were not able to pull-up on command. I was incredibly dizzy, struggled with vertigo, and have no real recollection or memory of this time in my life.
Imagine parts of your life just ...disappear.
I started a low-dose chemo regimen that had me on five drugs, one chemo drug, one cholesterol drug, an anti-inflammatory drug, and a drug that used to be an antidepressant in the 40s called Thalomid. I struggled with nausea throughout the day, had my new head of hair thin out, and had to have my mom wheel me to my college classes for the first month after surgery. Eventually, I was able to use a walker, and then went to a cane during the duration of my Junior year at my University.
I tried to have some semblance of a college life, and joined a sorority in my Junior year. I wore heels for the first time since freshman year, barely able to walk in them, and tried to connect to women who just graduated high-school. I remember thinking how much my life veered during those years, and how much I didn’t care about boy problems, walks of shame, or getting drunk and I hated how much I didn’t fit in. I couldn’t find my place anymore and was so incredibly lonely. I had my amazing family, my best friend I (still) call my wife, and a small handful of friends that stuck around, but I had nowhere to go, nothing to do, and nothing that interested me. Your vision becomes so singular during your sickness, that you loose sight of anything else.
Throughout the year, I developed more and more muscle weakness in my lower legs and feet, eventually diagnosed as foot drop. I struggled to find my center, and my legs struggled to hold me up. I would fall all the time and became more and more frustrated. I used to be an athlete, a woman that was a powerhouse of strength and stamina, but now I could barely make it across campus without falling or being late to class.
My docs took me off the low-dose chemo regimen 10 months into it, without completing the full year due to the progression of muscle weakness. I was eventually fitted for a plastic, clunky brace that I wore on my left ankle and foot for years that helped with my foot drop and I was told I would never get better.
During my Senior year, I refused to walk with a cane any longer, and started finding innovative ways to make my life easier. How could I accomplish the same things I used to be able to do, while conserving precious energy and time? I finished college only one semester behind (thank you mom), and worked on trying to figure out what my next steps would be.
Who was I? What did I want to do? How was I going to do it? Questions I still ask myself now, and probably will be asking until I am no longer here.
