What’s Wrong With Me?
We thought it was just a cold.
Back in late February, I came down with a cough and had a runny nose. The first thing you figure is “It’s just a cold”. Naturally, that was the initial thought. Things changed when the runny nose stopped, but the coughing didn’t. In fact, the coughing lingered and ultimately grew worse.
I had also been experiencing back and shoulder pain for a few weeks as well. Figuring on muscle soreness, I saw a chiropractor, thinking it was a muscle issue that the chiropractor could work out.
As the weeks progressed, the coughing got worse, and I was constantly short of breath. It’s pretty concerning when you’ve been in pretty good shape all your life, and now you can’t walk upstairs to brush your teeth without having to catch your breath. Unfortunately, that was the reality of my situation.
After a trip to a minute clinic and two visits to my physician, I got a chest X-ray, which showed “tissue abnormalities” in my chest. That’s a pretty general term, but it was definitely concerning. It was also suggested that I see a pulmonologist, which I did. The pulmonologist looked at the X-ray and immediately sent me to the hospital for a cat scan and blood work.
I was admitted to the hospital and that night the ER doctor came into the room I was in to discuss the cat scan. By that point, my girlfriend was there along with my dad. He mentioned a few possibilities for what it could be. He mentioned a cyst on my liver, a rare kind of tumor, as well as possibly Lymphoma.
Both my heart and my girlfriend’s heart sank when the doctor said Lymphoma, even though it was merely a possibility at this point and not any kind of diagnosis. I underwent a biopsy the next day to gather tissue and run some tests to try and figure out what is going on in my chest. With undergoing the biopsy came the slight chance that my body would have a reaction to the procedure. Sure enough, I ended up running a fever. Although it required a rapid response, they were able to treat and take care of the fever before the day was over.
After several days in the hospital, we finally had a diagnosis: I had a rare Mediastinal Germ Cell Tumor in my chest. The bad news is that it is a cancerous tumor. However, all of the doctors and nurses we spoke with were very optimistic. Although it is a rare tumor that is not often seen, they were very optimistic that it is treatable and curable.
However, I was transferred to a hospital that specializes in the treatment of rare cancers. And so I went from St. Mary Medical Center (my local hospital) to Fox Chase Cancer Center. It was a longer drive, but not by much. More importantly than that though, they’ve treated this before, so I was in great hands.
So here I was at 26, less than a month from turning 27, entering a world I never even imagined I would be anywhere near. As far as I was concerned, there was only one way to go about this: fight this thing and destroy it. Treatable and curable were just about all I needed to hear. Like any health scare, this was a process of a couple of months and not an event. However, this thing didn’t know what it was up against.
One of the things I kept with me was a quote from the late Randy Pausch.
Pausch was a professor at Carnegie Mellon University in Pittsburgh, PA who gained fame when he delivered the University’s traditional “Last Lecture” of the school year after he was diagnosed with pancreatic cancer. One of the first things he said to the crowd was “We cannot change the cards we are dealt, just how we play the hand”. I couldn’t change the fact that there was a tumor in my chest, but I damn sure could decide how I went about it, and that’s exactly what I did.
Just a little side note. I choose to refer to the tumor as “The Thing”, instead of cancer. The word “cancer” doesn’t bother me, but referring to it as “The Thing”, or another name, helped, and continues to help, keep me optimistic and in a good mood. I am naturally a very optimistic person, but when dealing with this, any and all positivity is welcomed and appreciated.
I got through my first week of Chemotherapy in the hospital. At Fox Chase, they do that in order to see how your body responds to the Chemo. Plus, if you do experience any side effects, nurses are right there to help you recover from them. The remainder of my chemo was done in outpatient care. Chemo is quite intimidating, but one thing I learned is everybody is different, literally and figuratively.
My body is different than your body is different than my mom’s body, and so on. Fortunately, the first week went well, as I was tired, but did not suffer any other noticeable side effects.
After spending four days in one hospital and another week in a cancer hospital, I finally went home to begin outpatient care. Although I had to go back and forth for treatment, it was certainly be nice to not be confined to a hospital bed.
One of my treatments that I underwent once a week between Chemotherapy is a treatment called Bleomycin – Bleo for short. Bleo is actually a relatively short, relatively easy treatment that was done once a week throughout my treatment.
There is some debate with Bleo in regards to the risk of becoming oxygen dependent. Doctors have said different things about it, but fortunately, they are confident that I will be OK and that the Bleo will not have a great effect on my oxygen.
The “C” Word
There are things in life you think about, but never even begin to imagine would hit so close to home. One of them is cancer. As I received my initial diagnosis, my family and girlfriend immediately feared the worst. I can’t fault them at all though, given that when something like this happens, literally every possible scenario runs through your head.
Not only were my parents scared and fearing the worst, but my girlfriend also had a moment after hearing of my situation. After a lengthy embrace between us, a transfer to a cancer hospital, and a solid plan of attack to treat and cure this, a massive sigh of relief came over everybody. While I was not nearly out of the woods yet, but I had a plan of attack and was more than ready to get started. At this point, the doctors did all they could and made the decision to transfer me to a cancer hospital that has treated these tumors before.
The word “cancer” does not bother me, but as a personal preference, I simply referred to my tumor as “The Thing.” It’s not super original, but it’s one of those things to help keep me optimistic and in a good mood. Interestingly, there were a few different names for it. My girlfriend, bring the huge Harry Potter nerd that she is, calls it “Voldemort”. Plus, that’s basically what it is. Yes, it was a cancerous tumor, but it was a treatable and curable one. I never saw it as cancer, just this thing in my chest.
Again, I don’t get upset or anything if someone says cancer, I’m just nit-picky about the wording of things – in part because I am a writer – but it is also important to know exactly what is going on with me. Wording is extremely important to me because the wrong words will make the situation much worse than it actually is. That’s one of the last things you want in a situation like this where everyone’s emotions are already running sky-high.
Think about it for a second. Rather than telling people I had cancer, I told people I had a rare, but treatable and curable, tumor in my chest. Sounds a little better than just saying “I have cancer” and letting people immediately fear the worst.
The reality is, the situation sucked big time. But at the same time, I considered myself extremely grateful because as bad as this was, things could have been so much worse. Not only that, but after seeing some of the incredible patients in the hospital, I realized that my situation isn’t all that bad compared to what some of the other patients are going through.
I know, that may come off as me bragging about my situation, but that’s not my intention at all. It just opened my eyes about my situation and how I was able to fight it and overcome it. Truth be told, the other patients in the hospital are pretty incredible people in their own right.
I was discharged from the hospital on a Friday and went back the following Monday for my first Bleomycin treatment. Bleomycin, or Bleo for short, is one of the drugs I took as part of my chemotherapy treatment. The treatment itself was a relatively short process of about 10 to 15 minutes.
My first treatment went pretty well, but I was tired and beat up for the rest of the day. I wound up heading to bed early and waking up the next morning felling pretty good. I did some walking around the house and even partially up my street to get some fresh air. Later that afternoon the weirdest thing happened.
I sat down to watch a soccer game and as I was watching, I felt my body start to get warm out of nowhere. Unfortunately, I ran a fever. So we called the hospital as per the protocol. Unfortunately, they needed me to come to the hospital to take a look at me. It was a little nerve-wracking because there was a chance I was going to be admitted again. It depended on the blood test, as they have their own protocol if things weren’t up to par. However, after some IV fluid and a blood test, things came up OK and I was able to come home.
A part of treatment that exists whether we like it or not, but anyone who has gone through treatment hates, is setbacks. Unfortunately, they happen when you are treating cancer, or any sicknesses or disease for that matter, and I was not immune to them.
The Bleomycin treatment itself wasn’t bad. Plus, it was short, so it was not as though I’d be at the hospital all day. However, the Bleo came with some side effects. One such side effect is A fever. As your body gets used to these chemicals being in there and fighting the disease, your body temperature can unexpected rise. Unfortunately, that’s what happened to me.
After my first Bleo treatment, I experienced a fever almost every day of the week. One of the many great things about the hospital I was at is that they have protocols for just about everything. This included if I ran a fever. Because my temperature exceeded 100.5, we called the hospital and wound up making a trip down for them to see me.
I got a blood test to make sure my white blood cells counts, among other counts, we’re still at a good level. Low white cell counts are one thing that will lead to being admitted into the hospital again. Fortunately, my counts were fine and I was able to go home without being admitted.
Two weeks later, however, my white blood cell count did go down. The doctors were concerned, but they gave me antibiotics to help fight off any potential infections (since my white blood cell counts were down and so was my immune system due to the Chemo). There was even a point where my doctor considered foregoing my Bleo treatment for the week. Ultimately, she allowed me to go through with it to continue fighting the tumor.
I avoided being admitted again, but I was basically sequestered to my house for most of the week. One top of that, my ability to make contact with other people was severely limited.I was very fortunate to get past these setbacks, but it didn’t make them suck any less. Still, I was still very fortunate that the setbacks weren’t worse.
Any time someone is dealing with any form of cancer, it means Chemotherapy. The treatments vary depending on the condition, but the results are typically the same. I don’t mean to sound like I’m bragging, but I consider myself to be very fortunate that my body’s reaction to the Chemotherapy has largely been positive. I was tired and worn out an awful lot, but that was it, really. Dealing with the tiredness was almost entirely a matter of keeping myself motivated to not lay down for the rest of the day and make the most of my time while I still have the rest of the day to do so.
The Mental Game
When you go through something like this, it’s not uncommon for people to ask you questions such as “What is the hardest part of having cancer?”, or “What is the toughest part of dealing with it”? I too have been asked questions, and the answers have mostly been positive. However, I can tell you what was the hardest part of my entire illness and treatment.
I was fortunate to be able to do some things outside of the house, one of which included going down to a Phillies game (I did check with my doctor as a precaution, and she gave me the green light to go). At the game, I took a picture with my girlfriend, as we usually do when we are at a game together. After seeing the picture on her Facebook wall, I said to myself “Wow, I don’t like the way I look”.
When I was healthy, my weight hovered between 155-160 lbs (not bad at all given that I’m 5’6”). As I began to feel short of breath, my weight dropped about 5-10 lbs since I also saw a decrease in my appetite and wasn’t eating as much as I usually do. I was eventually down to as low as 131 lbs during Chemotherapy, since my body is going through a lot to fight this tumor.
I don’t necessarily obsess over how I look, but I do consider myself someone who prided themselves on being at a healthy weight and having some muscles on me – nothing bulging out or anything – and have a pretty good amount of strength. Because of that, it was a very difficult pill to swallow when I saw the physical effects that this had on my body. It was a lot more emotional for me than I expected. Yes, it was only temporary, and I was, and still am, determined to get that back, but that didn’t make that reality easier to swallow.
I decided to reach out to my dad for help to adjust how I approached this mentally, not just because he’s my dad, but because he had an experience with this. Unfortunately, he suffered a stroke a little over a year and a half before my diagnosis of the tumor. Fortunately, he made an amazing recovery from it and is doing well now. While his recovery was different than mine, there was definitely a mental aspect he had to overcome, so he was a great help in that regard.
I mentioned earlier that my body, overall, reacted pretty well to the Chemotherapy as far as not experiencing any real side effects other than tiredness. However, that didn’t mean that I was not affected by any side effects.
One of the drugs I got during my 5-day treatments was Cisplatin. One of the possible side effects of the Cisplatin is potential hearing loss. In your ear are little hairs inside the Cochlea that help you hear. Chemotherapy is known to cause hair loss, and not just on your head. For me, these hairs in my ears were affected. As a result, I suffered a partial hearing loss of high frequency sounds (such as the “S” sound of an S or, words spelled with a C that sound like an S).
This loss can be permanent or temporary, but regardless, it was not something I anticipated. At the same time, this ties back into the mental game you play when you have cancer. I’m not happy about my partial hearing loss, but I look at it as one more thing to overcome as I work my way back to full health.
The Final Bell
The final bell isn’t what you might think it is.
In many cancer hospitals, there is a bell on the wall near the infusion room where patients undergo Chemotherapy. It’s there to be rung, but only on one specific occasion. When a patient is finished with their final Chemotherapy treatment, they go to the bell and give it a few rings. The rings are accompanied by applause, and sometimes cheers, from patients and their family members in the waiting room.
One of my doctors told me that Chemotherapy is kind of like a boxing match. There are multiple rounds, and some rounds may be better than others. Ultimately, like in a boxing match, you want to make it to the final bell. Any time I watched a patient ring the bell, it was a very special sight. Some people cried, some fist pumped, some prayed, and everyone smiled. As I watched, it just made me want to get to the end of my treatment and ring the bell myself. It’s a nice bit of motivation to make you keep fighting.
On Monday July 10th, I finally reached the final bell. After a two and a half month-long treatment, I finished my final cycle of Chemotherapy. As I came back to the waiting room, I was surprised by my two brothers, my sister, and my sister-in-law. A number of nurses also came out to watch as well. As I rang the bell, there was a flood of emotions going through my head.
I did it. This was the toughest fight I’ve ever been in, and I won! While I will miss the nurses in the infusion room, as they are incredible people, I won’t miss Chemo for a second. This is only the first part, as I still have to have surgery to remove whatever is left of the tumor. However, the hard part is over.
As I recover from the Chemotherapy and prepare both physically and mentally for surgery, I find myself saying the same thing to myself that I’ve been saying all along: “As much as this sucks, I am extremely grateful for my situation”.
Now on to Part II!