As I looked back at my blog in April and May of 2019, I only decided to keep two blog posts unchanged. The two posts, “You have Cancer” and “Thoughts Before Running Across the Country,” were in my opinion the best. I had taken the most time to write these and they were the most raw, emotional, and powerful.
However, neither of these posts reflect the impact that 4K for Cancer had on my cancer journey. This will be talked about in a series of blog posts after the 4K for Cancer Daily Blogs are completed.
For now, below is an exact copy of the blog post “You Have Cancer.”
I often look back on my cancer diagnosis and cannot recall what exactly happened. This is without a doubt the most difficult and traumatic experience I have dealt with. It is something I have struggled with since the very beginning to talk about. Sometimes I don’t mind talking about cancer, as hard as it can be, yet other times I detest it. I believe that my mind, compensating for the negative memories that encompassed eight months of my life, compartmentalized these moments to the furthest parts of my brain. I did not think about it. Choosing to forget, choosing to ignore, choosing to avoid what is arguably the most important part of my life. Now, I will be confronting cancer one step at a time. This blog will document my journey with cancer, from diagnosis to survivorship, and ultimately to my run across the country.
My family and I often said that it was like a dream. Going through treatment was a paramount shift in my life and my family’s life. At the end, when everything was over, it didn’t even feel real for any of us. During treatment, I often didn’t even feel like anything was happening. Looking back, over three years since the end, I still cannot believe what happened. Everything seems to be a blur, but here is my best memory of what started it all. Here is my recollection of my cancer diagnosis.
In hindsight, there were many things that hinted that something was wrong with me and I probably should have acted upon. I ignored some things and others I just didn’t notice or failed to put two and two together. I was diagnosed with testicular cancer on April 22nd, Earth Day, of 2015. A few months before, I had felt something abnormal in the monthly exam my pediatrician had taught me to do. It was lumpy. I distinctly remember thinking, “I don’t know what this is, but nothing is wrong right now. It won’t kill me.” How stupid I was to brush this off.
Then I began feeling back pain in the lumbar area of my lower back. I couldn’t get away from it. I blamed it on my mom’s new car because the seats were different from the old car. I blamed it on my bed and I even blamed it on my posture. About a month before the diagnosis, I began having pain that radiated from my back and down into my hip. It was crazy and I had never felt anything like that before. Yet I still didn’t do anything. I slept all the time. The pain in my back became more focused on my left side and started spreading upwards. Soon it got to the point where the pain went all the way down my leg and it felt like a tingling, burning sensation. I didn’t realize it then, but I was experiencing sciatica pain. Sleep was the only way to get away from it.
I was a miler and a two-miler in high school. I loved it and hated it at the same time, but the track is and always will be my favorite sport. April is the time of year where track and field is just starting to get serious in high school. It’s that part of the season where you should be noticing a difference in your times from earlier in the season. Back in 2015, I wasn’t. I remember being upset because all of my friends were progressing, and I was on a plateau. Nothing was happening with Ryan’s watch. Then spring break came, and we had a meet. I was determined that this would be the race that I broke my personal record in the mile. I was by no means at the front of the pack and always raced against my own times. But I was confident that this would be the race. It had to be the race; I hadn’t done anything all season.
I remember listening to a speech to pump me up before the race and get my adrenaline going. Yup, I was one of those kids. When the race started, my sciatica pain immediately flared up. The pain in my back was incredible. “Is it my shoes?” I remember thinking. Even though its worse than usual I decided that I can push through it. It gets to the point though, where I distinctly remember slowing down in the home stretch of the third lap of the four-lap race. But it wasn’t because of the back pain. It was a different pain, my teste hurt. The pain went right up into my abdomen. It hurt and it hurt bad. At that moment, that saying “Pain is weakness leaving the body,” ran through my mind. I dug deep and I pushed through the pain. My weakness may have been leaving my body, but my cancer wasn’t.
I finished the race that day with the best time in the mile that I have ever run to this day. 5 minutes and 39 seconds. I was beyond excited. I’d finally gotten into the 5.30 field. I was so excited. I was reminiscing about one day breaking five minutes. “Maybe senior year,” I encouraged myself.
Over the last few days of spring break however, my pain became excruciating. It got to the point where the sciatica pain got worse when I moved my leg. I asked my friends at school what they thought of it. I asked my parents. I asked my coaches. We all agreed on one thing. I needed to mention it during my physical that was in just a few days. I was convinced I just needed physical therapy. It was probably just a tweak.
On Tuesday of the next week, I had my physical with my pediatrician Dr. Santoro. He went through the monotony of normal yearly physical exam questions and asked me how I was doing. I remember mentioning the back pain, the sciatica pain, and how I couldn’t get away from it. “Can I have physical therapy?” I asked. He told me he would see if that would be necessary after he did the physical exam. After the exam, I could see my doctor’s posture change as he tensed up. I could tell something was wrong.
He called my Dad in and told us that he was referring me to a urologist at Connecticut Children’s Medical Center in Hartford. He said that he found something abnormal and wanted a specialist to examine me. We drove home, and I complained that I wasn’t given any physical therapy. “How was I supposed to fix this?” I complained. Soon, I fell asleep to get away from the pain.
I can’t remember if my mom called us on the way home or if she told us when we pulled into the driveway what happened next. But while all of this was going on, my Mom was at home. She was the first emergency contact that Dr. Santoro had because she answers her phone better than my Dad does. So my mom, who had no idea yet that I had been referred to a urologist at CCMC, gets a call from the Urologist. His name was Dr. Nelson, and he stated that my pediatrician had referred me to him. He understood that I needed surgery and asked how soon we can be at the hospital. Now my mom received this call completely blind as to what was going on and you can guess her reaction. She freaked out, but in a way that only if you knew her well, would you be able to see that she was nervous. My parents and I talked about this when we were all together and called back Dr. Nelson, the urologist. He said that we needed to come into the hospital first thing in the morning. Oh and don’t eat or drink anything, he added. Apparently, the surgery was a biopsy. I didn’t sleep well that night and my mom didn’t sleep at all.
The next morning, I had a small glass of water because I was so thirsty. Just another instance, of us not realizing the severity of the situation. We were introduced to Dr. Nelson in person and at some point, I had an ultrasound and a CT scan.
I remember the ultrasound image so clearly. It was smooth, like the ocean and the technician pointed out different anatomical parts to me. Then halfway through, the image changed to something more rough looking. It looked like the craters on the moon. The technician hardly said another word and put on a very serious look on her face. I began to get nervous. I think I went for the CT scan next, but I really don’t remember.
After that, Dr. Nelson examined the investigatory images and had us wait in the examination room in his office. I remember being in a lot of pain, but I also remember being cold. (To this day, I do not understand why it’s necessary to treat hospitals like it’s Antarctica and the world hasn’t invented a heater.) There was a knock on the door and Dr. Nelson walked in with another doctor who introduced herself as Dr. Gillan. She was an oncologist. At the time, I had no idea what the word “Oncology” or “Oncologist” meant. Both doctors told my parents and I to sit down and pull the chairs closer to the examination table. One of them took out a pen and started drawing on the thin white paper that was pulled over the examination table. They were drawing kidneys, ureters, and a bladder. They also drew a large oval next to these things. After some explanation to me and my parents, who had very slim knowledge of human anatomy, we understood what that oval meant.
A human kidney filters your urine and drains it to the bladder where you excrete the waste. Each kidney has a tube connecting itself to the bladder called a ureter. That odd circle that the doctor had drawn, was some kind of mass.
“We do not want to operate on the mass in your abdomen, but we believe that it may be cancer,” I remember them saying. “We’re going to operate and take a biopsy of your teste in what’s called an orchiectomy. This will tell us what the other mass in your abdomen is,” they explained.
Since I had drunk water in the morning, they had to delay the surgery. Both doctors would be present for the surgery and they would also place a stent in my left ureter. That ovular mass was pressing on the ureter and wasn’t allowing the kidney to drain. A stent was like a small tube they could insert into the ureter to stop the ureter from being further compressed and allow it to drain. They also said they may insert a semi-permanent central line, called a port, into my chest that would allow them to access me with an IV at any time.
This was all a lot to handle and I remember the doctors, and especially my parents being concerned because of my stoic reaction. I didn’t believe it. I wouldn’t believe it. I had no idea what an orchiectomy was or its implications. I didn’t want to know. I was probably in a state of shock. I do remember telling them that I was fine. I had just gotten a personal best in the mile and I intended to do this again sometime soon. Both doctors were surprised that I could even walk. Dr. Nelson left the room and Dr. Gillan, the oncologist, brought my parents and I to her part of the hospital.
She gave a tour of the fifth floor “to show us where we would be spending a lot of our time if the results came back showing some kind of cancer.”
I didn’t pay attention to anything at all. Looking back, I couldn’t tell you anything she said. I was shutting everything out. I refused to believe that I would be back in this part of the hospital again, or ever see Dr. Gillan again. At one point she brought us into a room and sat us down. I think a social worker came. I really have no idea what happened. This is the moment where it literally all blurs into indecipherable memories.
At some point, I went into surgery. When I woke up from the anesthesia, the doctors told me that everything went as expected. They were extremely happy to have put the stent in place. When the kidney started draining again, it drained out the contrast from the CT scan earlier that day. My kidney should have drained this out within the hour of having the CT scan but didn’t. The stent was placed almost eight hours after the CT scan. Dr. Nelson said that if he had placed the stent much later, my kidney would have shut down because of the mass pressing on it.
I went home from the hospital the next morning hanging onto one key piece of information. They hadn’t implanted the port into my chest. Does this mean, that the doctors thought there was a chance that I didn’t have cancer? I hung onto this hope for a few days and stayed out of school because the pain got so bad. I could hardly walk. My left leg was swelling up and I couldn’t tie my shoe.
In all of this, my friends were concerned as well because I was pulled out of school for surgery. I told them that I potentially had cancer and their faces showed shock and disbelief. I didn’t know what to do. They didn’t know what to do.
I think what was hardest was my family. My dad took the news tough. My mom was being realistic and preparing for the actual diagnosis. I was still in denial. At some point, my parents told my siblings what was going on. I don’t remember saying anything to them. I just remember them being there for me. Through everything, my parents and my siblings were always my best support.
By the end of that week, I had started treatment. Dr. Nelson and Dr. Gillan had determined that I had testicular cancer with a mixed germ cell tumor. The tumor had multiple different types of cancer cells. Only some cells would respond to chemotherapy. Surgical interventions would eventually be needed for the other sections of the tumor. We asked the doctors what the staging was, but they refused to tell us.
They said something like, “It’s a children’s hospital and we really don’t like to tell the family what stage it is because of psychological reasons.”
All I knew is that the cancer had spread to small nodules on my lungs. I was looking at four months of chemotherapy, a large abdominal surgery, and potentially another larger lung surgery.
Looking back, I don’t remember anyone outright telling me “You have cancer,” although I am sure that those words were used. I was in denial, and part of me still is, that I ever had cancer.
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