Back for my second post, where I will talk about what I was diagnosed with, when I was diagnosed and the big part...how I was diagnosed. Talking about cancer is never fun and the best way I know how to deal with it is to joke about it (so please don't get offended if I slip in a joke or two).
In May 2019, I had just finished up my junior year of college and came home for what I thought was going to be a great summer. I had plans for a family vacation to Punta Cana, but I guess getting cancer was the world's way of saving my entire family from the Punta Cana deaths haha. I also had an internship lined up. I would have added to my resume and learning experience with a great company. Sadly, these things would never happen. In less than 2 days I started having severe neck/shoulder pain on my left side. I have played sports all of my life and have had shoulder issues before. This did not seem much different. The pain began to linger causing sleepless nights. Of course this would just be the beginning of my symptoms. Two days later, red spots appeared on my legs. This could be anything...right? I thought maybe it could be bed bugs or flees. The following days came with flu like symptoms, and no, the neck pain had not gone away. The rash got worse everyday, bringing us to Patients First on Mother's Day. The doctor there took one look and confirmed another one of my fake doctor suspicions, it was something called Folliculitis. This is an infection of your hair follicles. I was so content with that diagnosis and couldn't wait to move on. Oh but wait, the shoulder pain was still there! The chiropractor was the first stop we made to figure out the shoulder mystery. This was my first time at a chiropractor and I am pretty sure it is my last as well. The Orthopedic doc was next on my train of doctor visits. We finally started to get somewhere with this visit. "No, it's not your shoulder. It is your neck that it causing this pain". I honestly didn't care what it was, as long as they could figure it out. While we waited for the doctor to come in, I noticed an enlarged lymph node in the lower left side of my neck. When I pointed it out to the Orthopedic doctor, it absorbed all of his attention ending the conversation about my neck pain. It was basically, forget the neck pain...you need to go see your primary care doctor about that lump now. GREAT... another problem and doctors appointment on my list.
May 16th, I went to my primary care physician and explained what was going on with my neck pain, the lump and that I had been diagnosed with folliculitis. She was not too convinced the rash was all folliculitis. Eczema was now in the mix as well. But I'm telling you...there was no way this rash was eczema. Once she put all of the symptoms together, she became worried I could have meningitis. An ultra sound of my neck and some blood tests were ordered. My doctor expressed great concern and explained to my mom that if my symptoms get worse, I should be brought to the hospital right away. Surprise, surprise... late that night my fever spiked, chills and aches set in and I was soon off to the hospital.
Have you ever heard of THON? It is an student run philanthropy event at Penn State University that raises money and awareness for families and children battling cancer. I have been involved in Mini-THON's my entire high school career and continued to be involved through my own family's organization after I graduated. I bring this up because I was on my way to the Penn State Hershey Hospital, where these families are being helped and treated. Where I would soon too be treated. Because I had been so involved with other childhood cancer stories and knew how they all started; I began to have a weird feeling on the drive to the hospital. All I could think was... this is the beginning of my story. Every story I heard from parents and children flooded my mind... but this was different. This time it would be me telling the story. At this point, there was no mention of cancer or a diagnosis...like I said, I just had a weird feeling.
When we went into the hospital I was immediately brought into the back because they feared I could have meningitis. Meningitis is very contagious and could be deadly. I was not complaining though because the waiting room was crazy! We would have been there for hours on hours if they didn't think I had an infectious disease, haha! It was still the beginning to a long night. I was cleared of meningitis and they still had no idea what the rash could be. Doctors were in and out of my glass room that had a sign reading "no pregnant women allowed"...yikes! The doctors even asked if their med students could come take a look at my rash because they had never seen anything like it before. They speculated and threw out crazy medical terms that we didn't understand. But, that didn't stop my parents from googling every word they could hear. In-between all of the staring and questions, I was taken to get a CT of my neck. While I was back there, they also ended up wanting a CT of my chest. We waited in the room for another doctor to come in with the results. We were blessed with an internal medicine doctor that looked just like Jason Momoa.
My mom jumped up to introduce herself so fast, I think she forgot where we were! Unfortunately, he was not there to read GOT lines. He was there to tell me that they found a 6cm mediastinum mass in my chest along with a few enlarged lymph nodes. He explained everything in a simple manner and made it seem like it wasn't going to be that bad. He told us I would have to do a quick radiation session and they would zap the mass and it would go away. I held it together pretty well for someone that was just told they probably have cancer. But when he walked out of the room, it was like every ounce of oxygen was taken away from me. The machines started to ring because my pulse was climbing so fast. I had to take some deep breaths in order to calm down. We had been in this crammed emergency room for so long and I wasn't going anywhere anytime soon. My sanity was dwindling. I was finally brought to a room at 3:30 am. Around 5:30 am nurses started coming in to take blood and do tests. The night crew honestly sucked with their bedside manner. Then again, I am really not a morning person.
Someone made a mistake with the room arrangements because a few hours later I got a visit from a nice old lady named Phillis. She walked right in with her lunch box and volunteer outfit on and took a seat next to my bed. My parents were still not back yet and I am not one for company, lol. Neither of us said a word until she started talking about the picture of a dog on the wall. Imagine my confusion and irritation when this lady was in my hospital room at 7am talking about a dog on the wall. Especially when all I wanted to do was sleep! After a little while, I finally asked..."so do you just hang around all day?" She quickly replied, "yes, unless they tell me to go somewhere else." Soon after this conversation a nurse came in and recognized Phillis. She was confused as to why Phillis was in my room and eventually figured it out. The person that was previously in my room needed an aid and they never changed the paper work saying he was gone. UGH... that was entertaining.
A few hours later the doctors came in. They still did not have much to say, other than they needed a biopsy of my lymph node. Dermatology was also called to look at my rash. The rash had been mutating by the hour at this point and was extremely painful. It had spread to my elbows, butt and back. The head of Dermatology came in and looked at my rash. He eventually explained that he believed the rash was something called Sweets Syndrome. It is caused by forms of cancer, but is extremely rare. He did a biopsy of one of the lesion to confirm his diagnosis. His treatment plan would be to start taking a high dose of Prednisone for around 50 days. He believed the Prednisone would clear up the Sweets immediately. That afternoon my team of doctors came in and decided to allow me to go home. This was because I wouldn't be able to get in for a biopsy until Monday. With the good news of going home, they also brought me the bad news that I could not take the Prednisone until after the biopsy. They were worried it would interfere with the biopsy results.
On Monday May 20th, I made my way back to the hospital for the biopsy. I was having strange panic attacks before the procedure. My heart was racing and I did not want to be away from my mom. They gave me a good amount of drugs to put me out during the procedure. I believe they used fentanyl to make me loopy and dazed, but instead it knocked me out! When I came to, the procedure was over and I was on my way to recovery. It is an outpatient procedure, so I was able to go home a few hours later. The next day I was laying on the couch relaxing when my mom walked in the door. She was home very early from work. I knew something was up at that point. "Mom, why are you home so early?" I asked. She brushed it off and said she just wanted to check on me. A few minutes past and I asked if the doctors would fill the Prednisone yet. My mom's answer was "let's wait for dad." Yep, something is going on here I thought. This can't be good. Both my mom and dad came into the Livingroom and sat next to me. They explained that the doctor had called with the results of the biopsy and confirmed it was cancer. The doctor wanted me to come back into the hospital for a second biopsy of the lymph node to determine the exact type. They were pretty sure it was Hodgkin's Lymphoma at this point but they needed to rule out Leukemia. This also meant I could not start taking the Prednisone yet. I was sitting there with a blank stare on my face and nothing going through my head. What is the right reaction to being told you have cancer? Is there one? I was really more concerned that I couldn't start treating the Sweets Syndrome yet. The sores were growing and forming into a beast.
Wednesday May 22nd, I went back to the hospital for my second biopsy. After the procedure, they finally prescribed the Prednisone for the Sweets Syndrome and I began taking that right away. When the testing was complete, we set up my first appointment with the Oncologist for that Friday. She would have the biopsy results for us at that point. It might sound bad but we were hoping for Hodgkin's over Leukemia. Because of our conversation with the lovely (fake) Jason Momoa, we were under the impression that Hodgkin's Lymphoma would be a breeze to treat. Like he said I would only need one or two radiation treatments and the mass would be gone.
This all happened within a blink of an eye and I still look back and feel like it was yesterday. A 21 year old girl should never have to go through these trials, but here we are. My next post will go into what my oncologist revealed to us during our first appointment. It was no walk in the park, but it would just be the beginning to a dreadful journey. Please comment with any questions or ideas you have! Any feedback is appreciated. I want this to be helpful for others that may be going through similar experiences. #IGotTheCancer
