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11/17/2016 Latest post:
In April of 2016 is when I noticed something was off. I was in the middle of the biggest project of my career when I got my first nose bleed. I was working in Midland so I figured it was just dry. From then until the beginning of October, nothing changed other than the fact I always had blood in my nose and I always seemed to be exhausted.
I've always felt like I've had hearing issues (and those of you who know me are probably nodding your heads in agreement), so I scheduled an appointment back in September with an ENT doctor to take a hearing test. I ended up failing 75% of my hearing test for conversation pitch, but my ears were in perfect condition structurally. I had blood work and an MRI done on my head to try to rule out any tumors, but because the hearing loss was equal in both ears we were pretty positive the MRI would show up fine. Both the MRI and blood work came back and the only thing that stood out were slightly higher rheumatoid factors, which means it was probably something more auto-immune related. I made my first appointment with a rheumatologist for November 1st.
The first week of October, I bent over to put some laundry in my closet and I felt pressure as if my brain was swollen. I stood up and after a few minutes the feeling went away. I've had that feeling a million times when I stand up too fast, but this time just felt different. It happened every time I leaned forward for the next few weeks. I woke up on October 15th in Pagosa Springs, CO. One of my best friends was getting married that day and my entire face was swollen. I took some Benadryl assuming it was related to allergies and altitude. The swelling went down slightly, but from that day on my face stayed swollen constantly.
The following week, I noticed the swelling was the worst in the morning, so I started trying to sleep almost sitting up. It was the only thing that worked. That Friday, October 21st, I woke up with swelling in both my neck and my chest and it felt as if I couldn't breathe. I went to urgent care and told them everything that had been going on. They told me I must just be having an allergic reaction. Because most of the swelling had been in my face and this was the first it had moved to my neck and chest, everyone just assumed it was allergies. They gave me a steroid shot and a tapered steroid pill pack. That did help the swelling and my breathing, but the swelling never completely went away.
As I reached the end of my steroid pack and the swelling started to return, my rheumatologist appointment time came so I figured I would just ask their opinion of what's been going on with my swelling. They told me my hearing was probably something to auto-immune but the swelling was a mystery and they wanted me to see an allergy specialist. They said my oxygen was at 100%, so it was crazy that I complained of it being hard to breathe. She told me if I felt like I couldn't breathe to just take myself to the ER and she would work towards a solution with me in the meantime.
That night I started noticing swelling in both of my shoulders near my neck and it started getting harder to breathe. I decided it was time to just go to the ER. I couldn't make it through another night worrying if I was going to stop breathing. I came to Texas Harris Health Methodist in Fort Worth at around 10:00 PM. I had xrays, CT scans, and more blood work. They'd given me steroids and some pain medicine and I felt so much better. As we were in the room joking around waiting for results, I really thought I was about to get sent home. I was just waiting to hear that it was allergies or something else so silly and small and I was just being over-dramatic. The doctor came in around 2:00 AM and said all of my blood work came back normal. Then he closed the door with a sheet of paper in his hand and apologized as he told us there was a tumor the size of a fist above my heart. I couldn't even look at the picture. There was just no way I had a tumor. I'm 24, I'm healthy, and how could it has possibly gotten that big without me knowing?
He gave us some time alone and then a tech came in to come and take me for an ultrasound. On top of the tumor, there were also concerns of blood clots in both of my arms. Sure enough, the swelling in my shoulder near my neck was due to a blood clot. I had a DVT clot in my left arm (which you normally find in legs) that was causing blockage, and a couple of non-occlusive clots in my right arm. At that point, they moved me to the oncology floor. I had no idea at the time that oncology meant cancer.
The next day we did another CT scan to make sure there was just the one tumor. Thursday morning I had my biopsy and by Friday night I was diagnosed with Primary Mediastinal Large B-Cell Lymphoma, a type of non-Hodgkins Lymphoma. The type that is only present in about 2% of cases.