Thanks for the click. Chances are, you already know me and you ended up here through my social media. This marks my first official blog post. WordPress is a big part of the cancer patient starter pack. Okay, here goes nothing. The road to becoming a cancer-lebrity starts now . . .
You are what you do, not what you say you’ll do. – Carl Jung
My name is Sheyla. Pronounced like the one with an A, for clarification purposes.
When I was a junior, I enlisted in the military. I traded my last summer of high school working forty hours a week at a local department store in rural Minnesota for orders to basic training in Oklahoma. Fast forward two and a half months later, and the only thing that wasn’t tan was the in-between skin of my fingers and the embarrassing crew sock tan line that the Army gave me. My mom drove all the way to watch me graduate from boot camp. Achieving my highest aspiration at the time, I couldn’t but help to wish my dad was there with me not just in spirit.
Going to basic training before the start of my senior year was an interesting experience, particularly after I came home. I got my driver’s license, bought my first car, moved into an apartment, and continued going to high school. Acknowledging that I had failed an English credit back in my freshman year (coincidentally the class that I had got the call to notify me that my dad had committed suicide and they finally recovered the body that was missing for a week), I had to incorporate going to the alternative learning center in my small town school district. I didn’t know that this would change my life, for the better. I was surrounded by people that I hadn’t seen in regular school in years, those who had gotten pregnant and had children, those with behavioral issues, and some with developmental learning disabilities along the way.
I managed to finish all my credits four months early to walk the graduation line with my entire class from the actual high school. Now that my diploma wasn’t in the way anymore, I had time to focus on making money. So I picked up two jobs. One at a prominent midwestern gas station and the other at a very overpriced Italian restaurant chain that everyone knows and loves. In the mix, I had been asked to participate in a local pageant as an elementary school alumni. It was a fun experience that lead to my participation in a national pageant system that ended up being a hard lesson learned about vanity approximately a year later.
Despite working long hours and participating in my community, I had an intense back pain that was beginning to develop over the course of my senior year. I went to a rural emergency room to identify the source of my pain, only to be turned away with antibiotics and more supply to the twelve ibuprofen I was already taking to try to sleep. Sleep was great, but it would only come after my ex-boyfriend spent an hour gouging into my back with his elbow at my request because it was the only thing that made the pain bearable enough to actually fall asleep.
After high school graduation, the clock began ticking for fulfilling the rest of my obligation to the Army. I was to ship to a joint base in Missouri for training pertinent to my selected military occupational specialty (MOS) at the end of June, just days after I had participated in a pageant. For lack of a better understanding as to why the Army decided to go Busta Rhymes with the title of my MOS was (thanks CBRNE), we’ll just say that I am a chemical specialist.
In AIT, I struggled. Very, very badly. From not passing PT multiple times yet being one of the skinniest people in the company, to not being able to stay awake within the general parameters of the average soldier falling asleep during training (an E-4 mafia skill that will stay with you for the rest of your life), I struggled. I remember asking myself after several PT tests watching my friends go have fun off post what was wrong with me, because I didn’t really struggle like that in basic.
I tried to get an answer to that question at a trainee medical clinic on post. To no avail, I was informed that my back pain was apparently caused by the fact that “girls aren’t capable of carrying a lot of weight in their assault packs.” Fortunately, I had enough common sense to stop wasting time there and continued training, despite still struggling. I dug in deep enough to finally pass a PT test just a week before graduation so I could finally go home.
After graduation, I ended up in another central Minnesota emergency room. This time, a really expensive CT scan revealed that I had a one inch cyst on my ovary that was told to be causing my excruciating pain, and something about weird lymph nodes. The doctor didn’t say much about the latter, but recommended that I follow up with a local OBGYN to consider having the cyst removed or excised.
After my very first surgery, it wasn’t long until I moved to the metropolitan area to finally begin my first year of community college at a large institution nestled in the beginning of downtown Minneapolis. I didn’t start the spring semester until January, but had moved in late October. So I had picked up a café job at a very prominent and luxury health club chain in the metro. Working 60 hours a week, I didn’t really have time to travel two and a half hours home for some doctor’s appointment that I didn’t understand the purpose for that I didn’t schedule myself with no car.
I had met my best friend at the health club we had mutually worked at. After a skirmish with the person that helped me move to the metro, I decided that my best decision would be to move in with her until we could grab an apartment somewhere in the Twin Cities. With my renting experience, it would not be a big deal. I scored a job with a large-scale Minnesotan bank chain, and I was single. I decided to download Tinder.
Boy, was that my best mistake. Scrolling through the fine-tuned searching capabilities of Tinder, I discovered a young man with a very, very attractive profile picture. One especially dreamy photo of him in his football uniform from high school and his brother, a couple others in hockey gear, and one of his swearing-in ceremony at the Minneapolis MEPS for his entrance into the MN Air National Guard. His name was Jon, and I decided to take the risk. To my surprise, he actually liked me on Tinder first.
Jonathan and I met after he badgered me for at least a week and a half to come watch him play pick-up hockey. Knowing full well he was out of my league, I decided against not taking the risk at first because he was a pretty boy and I wanted to play it safe. But he didn’t give up on me. So one night, I decided to grow some lady balls. I put on my best pair of sweatpants, didn’t care if I had makeup on or not, and decided that I was going to drive my friend’s car to go watch him play hockey in a local arena on Interstate 35 North, not too far away from one of the apartment complexes my best friend and I were trying to rent from. I stopped at the same gas station chain I used to work at back in the day, grabbed some explicitly sugary cappuccino with about half creamer so I didn’t burn my tongue off and look stupid in front of him trying to drink coffee, and headed on my way.
Never had been to a regular hockey game before, so I didn’t really know what I was doing. I also didn’t know which guy I was there for until I saw him showing off on the ice after he noticed that I was there. I was greeted by a strange girl, who ended up being his ex-girlfriend. Her first words to me were inquiring if I had been there for Jonathan, to which I had replied affirmative. The next words out of her mouth took me by surprise. “Don’t f$&k it up,” she said. That not being my first intention of being there, I decided that I was a little externally motivated to set the bar low so everything above it was an achievement after that exchange.
Knowing that was my first hockey game, I was not mentally prepared for the swamp ass that came off the ice. He tried to hug me but I got assaulted by his smell. However, he was cute enough for me to forget about it and I just had to wait for a little bit for him to change clothes. Maybe he wouldn’t come out of the locker room smelling like rigor mortis. I had high hopes for his change of clothes, but he only came out smelling like diluted death, just not as death-y as the first time he came off the ice. What’d I say about setting the bar low? Oh yeah . . .
Jonathan and I had ended up talking for a couple hours about everything. From the situation with the rogue female I had encountered at the arena, to the reason why I was down in the metropolitan area trying to make a living. We had discussed our mutual taste in music, which ended up being a lot of Avenged Sevenfold and Five Finger Death Punch. Everything up to the point where we started making out for the next five hours is a blur. I remember something about his cell phone ringing 57 times from his parents, but he was preoccupied with my causing of his lack of oxygen. It had to have been four o’clock in the morning by the time we both finally pulled out of the Lichtscheidl Arena parking lot.
Jon and I hit it off hard. We had just met and he had brought me to his entire family’s Christmas and New Years Eve functions. I had even gotten his family kicked out of a bar in Blaine that they’d been going to for decades because I looked 12. Knowing that our time together had an expiration date that was fast approaching, we were basically inseparable. He had told me that he didn’t want a relationship before he left for training for the Air Force. Until this day, his mom still teases me for asking him to lie to me for a couple days so I could pretend that we could keep going with the insane chemistry we seemed to have.
Knowing that I met him, it made me realize that I needed to establish primary care in the metropolitan area to find a doctor I could regularly see while I attend college. The main focus of this appointment was re-starting birth control, knowing I needed a refill but hadn’t updated my primary care provider since I lived in central Minnesota a couple months back.
By this time, I had quit the job at the health club in preparation for my upcoming semester and beginning my new job at the bank. I had about a week and a half of flex time to unpack my stuff that I had moved into my friends house, get rid of what I didn’t need, do all the administrative things I need to before I started college, but most importantly, sleep. I had noticed that by this time, I was sleeping 18 hours a day when I was off work. I didn’t normally do that and I had slept through a lot of falling objects caused by my friend’s dogs. I couldn’t get anything done. It finally came time to having my PCP appointment to get birth control.. where I had informed her that just until a week ago, I was able to shave my underarms until they became so bulky that I would immediately cut myself shaving every single time. Someone from my old job had pointed out the large knots on the side of my neck and told me that I should go get a massage from the spa in the health club with my employee discount.
After telling my primary care provider all about my history and my last healthcare experience in my hometown, she prescribed me a refill of my normal birth control but became very worried when we had discussed the swollen areas of my body, the pain that I was still having after surgery, and the fact that I was sleeping so much. With no hesitation, she ordered something called a PET scan immediately the next morning.
Despite my lack of general want to be anywhere in anything healthcare related at 7 o’clock in the morning sharp, my friend and I went to this “PET scan” thing where they poked me and I couldn’t eat for awhile. I was a bucket of sunshine. Very hangry.
The next day, January 12th, 2017, I was sitting in my best friend’s kitchen, when I had gotten a call from my primary care provider directly. She had asked me if I was alone at home. I told her I was sitting next to my best friend. What would come next would turn my life upside down in seconds.
“You have something called lymphoma. Lymphoma is a blood cancer. I’m really, really sorry, and I know you don’t deserve this, and I really really wish I didn’t have to make this phone call to you. You are very very sick.”
I told her she had to have had the wrong phone number or the wrong patient ID number. I made her read all the personal information in my chart tied to my test results again.
I remember the phone call to my mom shortly after. It was snowing hard outside.
Then to my grandma, asking eight million questions about what having cancer is like.
On January 17th, 2017, after a bone marrow biopsy and a fine-point and excisional lymph node biopsy, I was diagnosed with Stage 4B Classical Nodular Sclerosing Hodgkin’s Lymphoma at 19 years old.
Terrified, but relieved that a medical provider finally cared enough to listen to me and I finally knew what was wrong with me, I didn’t know what to think. Jon was in basic training, and I didn’t want to compromise his training, but I was literally dying (pun intended) to talk to him.
After tons of hard decisions and more surgeries, I began chemotherapy on February 1st, 2017. What comes after that?
Guess you’ll have to wait until the next one comes out.
The Terminally Illest