Another Brick in the Wall: Coping with Cancer

Growing up I never thought I’d have to face getting a second kidney at 26. If anyone had told me or my family that I’d be dealing with Cancer a mere 5 months after that second transplant I wouldn’t have believed them, much less think I’d have to strength to deal with it. But again, like Eminem says, everything could have been so perfect, but life ain’t a fairytale.

It was January 2016. I had just had my second kidney transplant 3 and a half months earlier and things were great. I had energy finally, I could eat without being nauseated, I was my old self again. I was ready to tackle the world. Then slowly by the end of the month I started feeling sick. Nothing out of the normal though of course, just a runny nose, low grade fever, chills. It felt like a seasonal cold which I typically get around that time of year. I figured eh, no biggie we’ll get to see how quickly I get over it with my new kidney. Then as time went on I just couldn’t shake the symptoms. It had been 2 weeks and I wasn’t getting any better. I started feeling weak and run down a lot, couldn’t eat much and just all around felt lousy.

I went to my primary Dr around the middle of January, he said it seemed like a viral infection and gave me antibiotics. I took them for a week, got a little better but never really recovering from this endless cold. I kept wondering was it just my kidney being new? I had been sick over a week before from colds and viruses so I didn’t overthink it but I was very curious what was going on. I got my labs done shortly after like I always did and the news wasn’t good. My creatnine had jumped way up to 2.4. Even at this point after my transplant that was very high. My body was trying hard to fight something, we just weren’t sure what. With my labs jumping up on top of me being sick they wanted me to go to San Antonio where I had the transplant to see what they wanted to do. I went and they said to just try to hydrate a lot and take a new kind of antibiotic. I went home thinking, well hopefully this new antibiotic will kick ass and I won’t have to deal with this crap anymore. I got labs again on February 2nd and my creatnine was much better at 1.6 but still high. Seeing the creatnine go down made me think okay, well my kidney is getting better, maybe I’ll start feeling better soon too. It was noticeable though at this point that something was indeed going on. I had never had allergies or viruses bother me for almost an entire month, even with 1 kidney I hadn’t been this sick this long before.

It was February 18th, I had been taking the new antibiotics for a couple weeks at that point and I still had that sick feeling. I just couldn’t shake it. By this point I had started to feel like there was something in my throat. Like a lump almost but very subtle. I thought it was just a complication from being sick for weeks and weeks at that point. Like throat irritation possibly. I went and got my labs and my creatnine was still at 1.7. Not terrible like when it first jumped up in January but not a good number either. My doctors were getting pretty concerned at this point. I had a CT scan of my neck and chest scheduled a few days later. One thing that I guess is lucky with me having that kidney transplant is everytime I go get a CT scan they don’t inject me with the dye. That’s because it filters through your kidneys and might actually do more harm than good. So for me all I have to do is lay down on the table and wait for the machine to scan me. So I had the CT done and sure enough, it showed a had a mass of some sort in my throat on the right side. Right by my lymph nodes. The Drs determined I’d need a biopsy next to determine what exactly this mass was and how to treat it.

I met Dr Hewitt at Austin Diagnostic Clinic here in Austin. She was an ENT specialist and performed my biopsy on March 3rd that year. When I came out of it they said they got a lot of good samples of my throat and base of my tongue. She said they’d call me if they found anything and to just keep up with my Nephrologist. So I went home not thinking too much of it. I was positive about everything, not really suspecting much of anything to come out of it other than here’s what your sickness is, here’s some targeted antibiotics and that’d be the end of it. A few days went by. I was just taking it easy, recovering and playing video games in my room and my cell phone rang. It was Dr Hewitt on the phone about my biopsy results. When I answered I could tell there was a little hesitation in her voice. I asked her what was up and she regretfully told me that I had Cancer. When I first heard it things slowed down a little, I got a shiver down my spine but calmly just told her okay, what do we do next? It still surprises me that I took that as well as I did. It was very similar to when I was told I’d need a new kidney. It hit me, but then I just immediately wanted to know how do I beat it. What tools do I need? How am I going to overcome this? She told me they were scheduling me with Oncology and they’d be the specialist that’d be able to help me. After I hung up I didn’t want to do anything. I just sat for a minute by myself processing what I had just heard. It was a 50/50 of thoughts. I told myself, I’d be okay, I have my Cody’s Warriors group and tons of friends and family that just helped me get through a transplant so I have a support system. I’d get scared though, Cancer….really? Me? And why? Had I not been through enough the last year? I had to reassure myself that I’d just take it all one step at a time and do what I gotta do.

You go though some strange emotions when your told you have Cancer. Of course your mind just flashes to most of the stories you see or hear about and they rarely end with everything working out in the end. I had no idea the severity of what I had but I knew it was dreaded. I lost my grandfather to lung cancer just 5 years before this. I didn’t want to jump to conclusions but I did know I had a serious situation ahead of me. In a weird way I was able to think about my entire life and realize even if the absolute worst happened, I lived a great life. Truly. It’s like Alex Trebek would say after his Pancreatic Cancer diagnosis, most people have open ended lives meaning they don’t know when it’s going to be the end. But when it’s a closed ending life, you find a strange way of categorizing your life and it’s surprisingly manageable to decide what you want done with what. It’s like seeing the whole story instead of not knowing how it ends. And when you look at your life through that lens let me tell you, you begin to truly appreciate all these little things most take for granted. Small things that most never stop to see. You feel extra appreciative of every single day you get on this earth. I didn’t know what my Cancer was or how serious it was but it’s like my body knew, just in case it’s the worst case scenario, here’s a way to appreciate everything with the time you have left. I had great friends, amazing experiences and places I had been. I had the best family in the world, I had so so much to be thankful for and for experiencing what I got to experience despite having the challenges I did growing up. I graduated, I went to college. If it was the end, hey it wasn’t a bad life. I was only 26 and felt content with my life up to that point. Was there a million and one things I still wanted to experience and see before I was gone of course. But I was satisfied and had a strange calm over me that week. Maybe God was with me and helped me think through all that, I don’t know. But I did know I was ready to tackle this new challenge. I told myself that day this was again, just another brick in the wall.

My first step was meeting an Oncologist. I met with Dr Shrikande from Texas Oncology. She was very nice and very helpful. Unfortunately we needed to know more about what I had so we scheduled a PET scan and a bone marrow biopsy to see if it had spread. PET scan sounds funny but it stand for Positron emission tomography, basically they inject you with a tracer and combined with a CT scan it’ll give you a better idea of what you’re looking at. They quickly determined I had PTLD which stands for Post-transplant lymphoproliferative disorder. They weren’t sure if it was my Cellcept which is one of my anti rejection medications or the Epstein Barr virus was responsible or even a combination of both. But basically my B cells were mutating and gave me an early form of non Hodgkin’s Lymphoma. The first step was to get my immunosupprissive drugs reduced since that’s how PTLD starts. It was my weakened immune system from my immunosupprissive meds that allowed this to happen and my new kidney probably had the virus when my mothers kidney didn’t. So the EB virus combined with my meds is most likely how this happened. Apparently PTLD is the 2nd most common malignancy that occurs as a complication following solid organ transplantation (skin cancer is the most common). Less commonly, PTLD occurs after hematopoietic stem cell transplantation. The incidence varies by the type of transplantation: the lowest rates are seen with bone marrow transplants and liver transplants. The highest rates of PTLD are seen with lung and heart transplants, which is primarily due to the need for higher levels of immunosuppression. The incidence of PTLD is highest in the first year after transplantation; roughly 80 percent of cases after transplant occur in the first year.

My first step was to go to San Antonio to the same hospital I had my transplant at so my Drs could monitor me. It was March 14th, they started pretty quick at getting me admitted and start reducing my medication. It was going to be a balancing act of keeping my kidney healthy while combating the Cancer. I remember that day pretty vividly. They took probably 4 tries over the course of an hour just to get my IV started. I ended up just getting a PICC line put in. Then I sat in my room for hours waiting for a final CT scan. The hospital I was staying in had their CT machine down for repairs so I got picked up at 10pm to go for a ride in an Ambulance to go get a CT at a different hospital. The big issue there was they used the dye on me saying the Drs approved it and they really needed it. I said okay and within 5 mins I felt like my insides were on fire. I finally got back to my room at 11:30. And I started getting very nauseated and sick. I was up half the night throwing up. I remember feeling so out of it, looking up at the clock and it was just past midnight. I jokingly told my mom, well Happy Birthday to me. The next day I felt a bit better. It was indeed my birthday and here I was stuck in the hospital undergoing tests. One of the few things that brightened my day was my dad coming up there and bringing me a birthday cake. It really did make me feel much better and realize that I too needed to be positive. My parents were worried sick yet again and this was no time to be scared and upset. By the afternoon I got the CT results. It showed that I did indeed have PTLD and they had an ideas how to treat it. Thankfully it hadn’t spread to any other part of my body and for that I was so so grateful.

They decided that evening to administer the first dose of chemotherapy and would supervise me to see how my body reacted to it. It was called Retuxin and boy did it save my life. We weren’t sure at first though. I was pretty nervous when the guy walked in the room with a bag of IV fluid that has a giant bio-hazard sign on it. I had been pumped with all sorts of chemicals and injections over the years but not that stuff. At first everything was fine but about 4 to 5 mins into it I noticed my throat starting to close up and it got harder to breath. They quickly gave me a high dose of Benedryl and I was fine. The rest of the evening went smoothly with me only feeling tired at the end. The next day, March 16th I got released to go home and finish my treatments at Texas Oncology. I remember making the note that here I was at the same transplant hospital only a mere 6 months post transplant now with Lymphoma. When I look back now I truly understand the phrase you don’t know how strong you are until you have no other option.

I started my treatments the next week and would have to go for 3 more treatments at first to see how my body reacted to the Retuxin. I’d go once a week to Texas oncology and start at 9am and finish up around 2pm. Every 2 weeks I’d get a CT scan to show the progress. I’d get labs before every treatment date to check my blood count as well. They asked if I wanted a port but I knew that’d involve a lot of care for only 3 weeks of treatment so I opted to just get an IV each time. My mom went with me the first 2 weeks. We’d read, color in coloring books, watch TV anything to pass the time. Since they gave me benedryl everytime I usually would fall asleep for about an hour just to make the time go by faster. It was a supportive community in there. Everyone was there for treatment for something and was polite and really cool. The nurses were some of the best and most compassionate ones I had ever been with. It was uncomfortable, but they did everything they could to make you comfortable. You even learn to walk around with your IV pole to go to the bathroom. On April 5th Erica went with me for my final treatment. We weren’t sure yet if that was all I was going to need, but things were looking good, my body took the chemotherapy well. Again I’ll just say having someone there with you while you face all these challenges is everything. I couldn’t have gotten through everything if I didn’t have someone close there supporting me and helping me. Having someone that understands goes a long way.

I had my CT scan the next week and I was officially in remission. I was blessed beyond measure. I had overcome and beat something that I never thought I’d have to go through at a young age. I was going to be able to resume my life. Finally after dealing with so much it seemed like everything was finally looking to be manageable. I now have to get a CT scan and see my Oncologist multiple times a year, but as long as I’m in remission it’s worth it. I’ve had a few scares since then, but those are stories for later. All in all I could look back on that experience as just another big thing I went through and overcame. It’s still crazy to think about, but I got through it with my friends and family and God behind me. I only pray and hope I don’t have to face it again. And if I ever do, I’ll face it with as much positivity and strength as I did the first time. As long as I have my support I’m golden. And to those who are living with cancer or know a loved one battling right now just know attitude goes a very long way and no matter what, even when things seem hopeless, pray and let your friends and family guide you and lift you up. I’m sure you’d think this is the end of my crazy medial life, but nope. I still had more trials ahead. And with each one I’ve come back stronger and more appreciative of everything life has to offer. When times get tough, never give up.