For those who know me, I have a severe case of Rheumatoid Disease. A case so severe in fact that I’ve had doctors tell me to my face that they’ve never seen test results like mine, and going as far as to say I’m the “worst patient they’ve ever dealt with”. Yeah, thanks for kicking me when I’m down…
When I was diagnosed over three years ago my doctors used to throw around phrases like “When you go into remission…” and “Don’t worry, you’ll only be on steroids for a few months”. We were so hopeful and optimistic back then. So blindly optimistic.
But now after the years of disappointing x-rays and blood tests, failure after failure of one medication to the next, and 95+ pounds of weight gain from the steroids I was only supposed to be on for a few months, well that blind optimism feels more like blind stupidity. Of course, I know that these things are not my fault. I have an incurable disease that has taken a life of its own. My life, to be exact. It’s claimed my body for its own, stuck a flag in my inflamed flesh and renamed it Rheumatoid Disease Poster Child. What a sneaky bitch.
And the worst part of all of this is I know it’s winning. Every day that I wake up and feel like shit, knowing that before I even open my eyes that it’s going to be a very bad day, I know that it’s winning. Even on the less often days where I wake up feeling kind of okay, when I’m able to shower and get dressed without the aid of another, and actually make breakfast and enjoy eating it, deep down inside I know it’s still winning. Because that’s just one day in a sea of bad ones.
Two months ago, after a year of deliberating, I made the decision to try a very aggressive form of Chemotherapy to treat my disease. The reason it took me a year to decide was because of a side effect that was really really scary. Sure, there were the usually chemo side effects that also didn’t sound great…nausea, vomiting, hair loss, rapid weight loss or gain, possible infections, possible cancers, the list really goes on… But the worst one of all was that it had been known to cause brain tumors in some patients. Now of course they told me this was rare and only happened in a small percentage, but my issue was that I am ALWAYS that small percentage. Since I was little I always ended up being that rare statistic that no one accounted for. The “anomaly”. And I feared if I took this chemotherapy, I would get this rare brain tumor.
It wasn’t until we had exhausted every other medication and treatment out there, and failed, that I started to seriously think about doing the same thing chemotherapy. And in the end, I agreed, and set up my infusion date. Because of the strength of the medication and the weakness of my own body, the infusion would be given over the course of 6 hours. There would be two sessions, two weeks apart, and then I’d wait up to six months for the next one.
On the day of my infusion I was pretty nervous. I got over it real quick though when I was shocked and surprised to find that my father had decided to visit me at the infusion clinic. Til this day he had not attended one doctors appointment, treatment session, or joined my mom at the ER during the many times that I was there. And yet, chemotherapy seemed to be what broke the camels back. Perhaps, he had finally realized how very real and very life threatening my disease was. Or perhaps there was no good surf that day..
During his two hour visit, I went through a few blood tests, and waited around while they poked and prodded me with needles, finally finding a port site they liked for my infusion. Once he left, the infusion started. And the last thing I saw before I fell into a heavy drug induced nap, was my mom by my side, holding my hand in support, as she did everytime I lay in a hospital bed.
When I woke six hours later they were removing the infusion port, and soon after I was hobbling down to the unisex bathroom to change out of my comfort clothes and back into regular street clothes. Mom and I picked up something to eat on the way back to my house, and once there I fell back asleep and continued to sleep for another 15 hours. The next morning I vomitted for the first time, which wasn’t all that surprising, given the amount of chemo that went into my body the day before. But besides that I felt fine. Better than fine actually. I believe I even saw a movie with a friend that day. I remembered thinking, “Well this isn’t so bad, I got this!” How I only wish I could have remained in that happy state.
The next morning I woke with a jolt and I knew something was wrong. My mom had come over to check up on me, and before I could even greet her I was in the bathroom throwing up. As soon as I emerged I started to feel a pain in my chest and a tightness in my throat. Fearing that I was having a bad reaction to the chemotherapy, Mom gave me some baby aspirin and water and we waited. A few mins later I was fine, and she took me out to breakfast to get something in my stomach. We had planned to go shopping afterwards, but I felt so tired after eating that I opted to go home and get back in bed. I fell asleep within moments.
Later that afternoon, I woke not too long after receiving a text from Mom asking if I was ok. Even while still just laying in bed, I knew that I wasn’t. I asked her to come over right away. Over the course of the next twenty minutes I had what felt like a heart attack. I knew better though, this had happened before. I have reoccurring Pericarditis, a painful condition where the sac around your heart becomes inflamed and fills with fluid, essentially drowning your heart. The process feels exactly like a heart attack and can last for up to an hour, and can occur several times in a day if untreated.
The pain was excruciating. I couldn’t breathe, it felt like an elephant was sitting on my chest. I felt nauseated, but I could t throw up. My jaw was stuff and unmoving. And my chest felt like thousands of needles were being slowly pushed into it. By the time my mom arrived an hour later, I was dressed with a bag packed, ready to got to the Emergency Room.
When we first got there, we were not met with anyone who seemed to understand the concept of “emergency”. And it wasn’t until I started to have what appeared to be another heart attack in one of the waiting rooms that they did finally take me seriously. Or maybe it was the fact that was my mom was crying and shoutings and begging one of the nurses to look at me and help me. Finally after what seemed like forever, although maybe it was just an hour, I was taking into a room and given an EKG. After another long wait, I was taken into a room that was very long and filled with many people, divided by curtains. Doctors and nurses came and went, I was given a CAT scan and many blood tests, and finally after a very long time the doctor came back with the results. Yes, it was Pericarditis, and No, I could not leave.
I was admitted into the Observation Ward overnight. Because it was a Saturday, and the machine that could in-depth test my heart could only be operated on a Monday, I was told I would be there until at least then. 48 hours in the hospital, it would be my longest stay at Queens yet.
It was during my second night that shit really hit the fan. I had gotten up in the middle of the night to use the bathroom, and I guess the strain on my heart was just too much for my body to take. It started as just a flutter of activity, like I had walked up a long flight of stairs, or had a lot of caffeine. But it progresses to a sharp stabbing feeling within moments. I rang for the nurses, and after what felt like a ridiculous amount of time, someone finally came to check on me.
As a side note: The Queens Observation Ward had the worst response team ever. Everyone working there is way too relaxed, and they seemed genuinely surprised if one of their patients needs actual help. Which by the way, is why all of us were there.
While I’m not ready to talk about what happened to me that night on a personal level, I can tell you that the doctors informed me that I was close to death. Had I not been attended sooner and given medication I may have not survived. The last thing I remember is the beeping of the heart rate machine as it slowed and nurses yelling at each other. Everything went white and the next thing I saw was a dark room. At the time I thought I was dead, but in fact I was just waking up in my darkened room after I had passed out from the pain. Once stabilized, the nurses shot me up with a ton of pain killers and I had a deep snooze. It was the next day that they moved me to the Queens Heart Ward, where I would stay for another 7 days.
I won’t bore you with the details of my long hospital stay. There were some really bad days, like when the doctors accidentally caused an involuntary “colon cleanse”, or when I spent hours on end puking into a bucket- God, I hate chemotherapy. And there were some better moments, like when my family visited, or when my Mom found a volunteer Harpist to play for me in my room during lunch one day.
After 9 days of being stuck in that awful place, I finally begged hard enough and my doctor released me to my mother, as long as I promised to stay with her for the first night. They really did want me to stay for a few more days, but I feared if I did I might lose my mind. And I missed my apartment and my cats so badly. Although my Mom did visit them everyday and she let me FaceTime with them so I could see their adorable furry faces. I cried a lot after those calls.
After all that time in the hospital, my doctors (Cardiologists and GP’s) concluded that I had Reoccurring Pericarditis (Duh!) but that it was going down so I could be released on my own recognizance. I was going to have to take a medicine called Colchicine for six months to help prevent Pericarditis as well. I’d been on it before, and luckily there weren’t any side effects. I also had to take a ten day regimen of Aspirin. Yuck. That coupled with the chemotherapy, still very active in my body, brought on heavy waves of nausea and vomiting that didn’t seem to rest.
I spent the first two weeks out of the hospital sleeping constantly, and vomitting every other moment. I lost 28 pounds from two weeks before the chemo when my pain was so bad that I couldn’t cook or eat, to three weeks after the hospital when the sight of food still made me sick. While not the healthiest way to lose weight, it was the only victory out of an otherwise horrendous month.
It’s been just over a month since the fateful day when I had my first chemotherapy infusion, that Kickstarter this awfulness. To this day I still got nauseated every now and then, and vomit 2-3 times a week. From what I can tell, the first infusion did nothing for my pain, and I’m in the middle of an “active flare”. I never did get the second infusion, half because I was too sick during the time it was scheduled and other reason…well that’s to be continued…
My Pericarditis is under control for now though I’m still prone get it at any time of i change my medications rapidly or start something intense like chemotherapy. Apparently my body is very against trying new things that could be good for it. My Rheumatoid Disease is still trying to stake its claim, holding tight to that flag, trying to make me its own. Comments will be made as it progresses.