Battling Cancer: From Diagnosis to Remission, and Everything In-between.

As I am wrapping up my battle with cancer in the coming days I though I would share what the experience has been like, Zack-1 Cancer-0

I was officially diagnosed with cancer, aggressive B-Cell lymphoma on March 9th, 2016. The lymphoma was caused as a result of the medications I take for my transplant, so it is classified as PTLD (Post Transplant Lymphoid Disorder). While this was the official day of my diagnosis, a visit with my doctor about two weeks earlier left me knowing my diagnosis couldn’t be good.

I had stared school at the University of North Carolina – Chapel Hill a little less than two months earlier. One of the main reasons I transferred to UNC was so I could be close to my doctors at Duke; however, I never expected anything like this. I first went to health services at UNC complaining of pain when I swallowed around my tonsil. After looking down my throat, and running some tests they couldn’t find anything wrong with me, they told me my pain should subside within a few days. I wasn’t going to argue with them because they next day I was scheduled to fly home to New York, and spend the weekend visiting my friends at Marist. It was only about six weeks into the semester for them, but it felt like longer since I spent nearly everyday hanging out there in the fall. After a bittersweet two days there it was time for me to head back to my new home, I had a suite to myself in Taylor Hall, located across from the corner of William Blythe and Skipper Bowles Dr. It was a tough situation for me; I needed my own space after the transplant because I was at an increased risk for getting sick. However, as a transfer student it didn’t give me much of an opportunity to make friends, leaving me with a lot of lonely nights. I decided to join a fraternity (ZBT), and upon my return from my weekend trip to Marist I was settling into my niche at UNC. I was beginning to form some strong friendships with my ZBT brothers, and I was really starting to enjoy my time at UNC.

I waited about a week once I returned to UNC until I decided to schedule an appointment with my doctor at Duke, my pain had not gone away and it made swallowing very painful. I remember walking in there thinking I might need to get my tonsil removed, and that was not something I was looking forward to. As soon as I opened my mouth he knew something was wrong, he immediately told me I had to see an ENT (Ear-Nose-Throat doctor) right away. He mentioned the possibility of PTLD, but played it off like it wasn’t very likely. I remember walking out of that doctor’s appointment, sitting in the waiting room and calling my mom, 600 miles away I never felt more alone. There was nobody at UNC I felt close enough at the time to talk to about this, and I especially didn’t want to approach people I was starting to form friendships with, and say; “hey man, by the way I think I might have cancer.” On that phone call with my mom I remember saying something along the lines of: “Where are you going to be when your son is diagnosed with cancer.” I can’t imagine the emotions that went flooding through her head when I said that. I don’t ever give my mom nearly enough credit for all the things she does for me, it hadn’t even been nine months since my mom saw me at my lowest point when I was recovering from my transplant. That was without question the hardest experience of my life, it’s hard to explain the uncertainty of each day in the recovery process. Worrying that any little problem could cause long-term damage to my health.

It was the very next day that I went to see the ENT, another appointment I had to attend on my own. After seeing him a cancer diagnosis was all but certain, however, it couldn’t be officially confirmed until after they did a biopsy. During my visit with the ENT he stuck a camera up my nose, and down my throat to take pictures of the tumor on my tonsil. After reviewing the images he walks back into the room, and his exact words were: “Well I don’t know exactly what it is, but it’s nothing good.” I then proceeded to ask if he thought it was PTLD, he said he thought it was either that or another form of cancer. Much like the day before I walked out of the doctor’s office sat in the waiting room and preceded to call my mom. This time on the phone I had to fight back tears, as I explained what the doctor said to my mom. So many thoughts were rushing through my head, most importantly was the thought that my time at my dream school might be done before it even got started. I’ve learned my share in the medical field over the years, but one thing I never really knew anything about was cancer. My grandpa was taken from me in 2002 of cancer, but I was to young to really understand the disease at that time. I have had to battle through so many health obstacles throughout my life, but I always admired cancer survivors. For everything I had been through, I thought cancer patients are really the ones who had it tough. One week later my cancer diagnosis was officially confirmed, and it was time to begin prepping for yet another fight.

After talking with my lung transplant doctors I got the sense that the treatment really wouldn’t be to rough, but they really had no idea what they were talking about. It wasn’t realistic for me to receive treatment in North Carolina. I needed to withdraw from school, and wouldn’t have had a place to live. Still we meet with an oncologist at Duke just a few days after my diagnosis with the hope of starting treatment right away. At this point my mom had been staying with me in North Carolina, taking care of me, and really helping in anyway she could. I went into this appointment without any expectations, ready to do whatever it took to get better as soon as possible. Once he walked into the room he asked me if anyone had shared the results of my PET scan with us (test that identifies active cancer in the body), I hadn’t yet heard the results of the scan, but I wasn’t expecting the cancer to be anywhere other than on my tonsil where the tumor was. In fact I thought this whole thing could have been treated easily by just removing my tonsils, who needs em’ right? Well that wasn’t that case at all. The doctor told me the cancer was not only on my tonsil, it was also in my neck, chest, stomach, and lastly in my lung. I had stage 4 cancer, my heart sunk in my chest. The good news is in lymphoma patients with stage 1 or stage 4 the treatment remains the same. Lymphoma is a cancer of the lymph nodes, which are all over the body, the chemo works to break down the cancer in each of infected lymph nodes. After I could finally form enough words to make a sentence I asked if stage 4 was significantly worse than stage 1 since the treatment is the same. He wouldn’t give me a straight answer on that question; only saying that is was crucial to start treatment as soon as possible. Oncology doctors are a special breed, they are incredible at avoiding certain questions because they don’t want to upset patients. They rarely give straightforward answers because they don’t want to be held accountable for anything they told you incase something goes wrong. He explained that the treatment would consist of six-cycles one every three weeks. I would come to the hospital, and over roughly eight hours I would receive a cocktail of chemo medications. Obviously the main question that was on my mind the entire time was about the symptoms. He explained that I would lose my hair, feel tired, and week, but overall it wouldn’t be to bad. The way chemo works is in the three weeks after the treatment you start to feel a little worse each day until day ten, the middle of the cycle. After that you start to feel better each day until day twenty-one the end of the cycle. At that point you may feel almost back to normal, but that is when it is time to receive your next treatment. The point of this is to attack the cells, give the body some time to recovery, and once it is strong enough attack the cells again. After hearing his explanation I thought this was something I could handle. I had already marked mid-June on my calendar for when I would be cancer free, and could return to my life. We ended the appointment by telling the doctor I really wanted to receive treatment in New York so I could be with family and friends. The next day we packed as much as we could up and drove home to New York, haven’t been back to the tar-heel state since.

I got to spend a few days at home, and even made a visit to Marist before I went to meet my Oncologist in New York a few days later. Once I met this oncologist he had a different (and more grueling) way to treat my lymphoma. The number of cycles (6) and the time interval in between cyles (3 weeks) remained the same, but instead of receiving the treatment over the course of eight hours I would instead need to be admitted into the hospital four a total of five days for each cycle. I wasn’t happy when I heard this, but there was no turning back, and I was admitted to the hospital that night to begin my first treatment.

Hospitals were nothing new to me, but receiving chemo for the first time made me a little nervous. I started by receiving one drug that would run over a course of five hours, followed by a cocktail of several drugs that runs over 96-hours, and lastly the final drug only takes one hour to run. The first drug I receive during each cycle is named Rituxan, which believe it or not is made from rat proteins (I know gross), anyway nearly every person who receives this drug has an allergic reaction the first time. Naturally that is what happens when you inject rat proteins into a human body, basic biology. So of course I had an allergic reaction, after about an hour of receiving the drug I felt like my lungs were very tight and I couldn’t breathe, (this is a very natural reaction) the nurses were very prepared and handled it well. After that I didn’t have any more issues over the next several days other than the insane boredom of being in the hospital for that long. I get serious FOMO in these situations, I am a social guy and I hate missing out on opportunities to hang out with my friends because I have to be in the hospital. It is without question the worst part of constantly fighting medical issues. I can handle everything else, but please don’t take time away that I could be spending with friends and family.

My time in between cycles has been very manageable, I have been working full time when I don’t have doctors appointments or treatments. Unfortunately, in addition to battling cancer I have also been battling constant pneumonia’s as a result of the chemotherapy. This is not something anyone expected. After my transplant my immune system was already wiped away by the medications I take on a daily basis. Chemo takes this one step further, and makes me even further immunosuppressed. These pneumonias have led to two additional hospitalizations, each a weeklong. They have also forced me to need IV antibiotics three times a day since my first admission on March 15th. I am no stranger to administering IV antibiotics to myself, they come in the form of ball (size of a baseball) that I hook up to my IV every eight hours; they take about an hour to run. This is something I had done a couple times a year before my transplant. However, usually I would only be on them for a cycle of two or three weeks, never something this long. I did receive a break for about three weeks in early June, which really was just a miscommunication between the many doctor services that are covering me. Hell, I wasn’t gonna say anything to them, I needed the break! In addition to that after my third cycle of chemo my doctor decided to mention that for some reason since I have PTLD I am at an increased risk for the cancer to re-occur in my spine or brain. Honestly, this is something I have basically ignored and really given no thought to, I think I have been through enough already. Anyway, as a precaution for my last three cycles I have needed to receive a spinal tap (You know that really long needle) each time in which they test my spinal fluid. Each time they also inject a small dose of chemo into my spinal fluid to help prevent this cancer from ever forming.

With all that said, I should be discharged from the hospital with no intentions of returning anytime soon. My oncologist will still follow me for two years to make sure everything is going smoothly. I’m anxious to move on from this chapter in my life, and I can’t wait to get back to school. I am going to push myself harder than ever before to get my lungs in peak shape, I am ready to take back all the things that have been taken away from me for far to long.