Sorry for not posting in awhile. Life has been super crazy the past two weeks. Let’s get back to where we were.
God’s plans are always better than my plans. ALWAYS
There are some things that we as humans decide we will never do. People will say: “I am never going to. . .” then you fill in your blank. As Christians, God has a really funny way of saying no to those plans; sometimes wanting you to do exactly what you said you will never do. My situation wasn’t exactly like that. However, I never thought that I would go back to the hospital…again….for the fifth time in the last six months.
I had just had a MRA (it is like an MRI except a MRA is specifically used to look at the blood vessels.) My doctors really liked the fact that my major blood vessels were not being affected by the vasculitis. However, they did find a narrowed vein in my leg. My doctor asked if I had been having any pain in my left leg. I told him yes. I also mentioned that it had been turning blue the last two weeks. He proceeded to tell me that this was called May-Thurner Syndrome. This was actually totally unrelated to the vasculitis. However, the vasculitis could be affecting this vein making blood flow even harder.
Between this bit of information and some chest pain that I had been having, my doctor was beginning to get worried. He decided that he wanted me to be admitted on Sunday for my first infusion and to run a couple of other tests. So, he put the call in for a bed at the main hospital in UNC.
I was not really excited about this. I didn’t feel completely awful. I didn’t feel great but I didn’t feel bad enough to go to the hospital. However, this was the plan. The assistant doctor called me on Saturday to explain more of why I was being admitted. Let me just tell you that I was not so thrilled. However, he gave me some great news.
Because of the job responsibilities of the vasculitis specialist, he only worked in the hospital two weeks out of the entire year. The assistant doctor was explaining to me that I picked the right time to be in the hospital. I asked him why he said that. He explained because the specialist doctor was going to be the one on duty for the hospital that week. As I sat there listening to him talk, I just was amazed by how God provided this miracle. Of all the weeks in the year for my head doctor to be working, I was just amazed. God is so good to me.
Hospital Stay #5…
So, Sunday came and the waiting began. I went to church in the morning. No call yet. I ate lunch. No call yet. I went to take a nap. Just as I was almost asleep, the hospital called. I finally had a room. So, off to Chapel Hill I went.
Sunday evening was pretty uneventful. Trying to get an IV was an adventure as always. The IV team was called, and they had to use an ultrasound machine to finally get an IV for me. This part of going to the hospital or getting infusions is always interesting.
However, after all of the IV stuff was situated, I ordered dinner and was relaxing. Most of my family went home for the night. My mom stays with me whenever I go on these hospital excursions. So, we were pretty tired and ready for bed. I turned off the lights about 11:45 and just as I started to relax my bed started making these weird noises.
Now, if you have ever been around a hospital bed you know that they self-adjust. The beds don’t just let you sit in them, they air up and then release the air and so on for awhile. And after spending a lot of time in the hospital, I knew how these beds were supposed to work and this bed was just not cooperating. It kept humming and making interesting sounds. It also kept calling the nurses station randomly. So, finally, I called my nurse in so she could take a look at it. By this time it was close to 1 AM. and my bed was being rolled out of my room while I waited on a new one. By now I just start checking things off an imaginary bucket list of things I never thought would happen. Thankfully, that was the end of Sunday night’s little drama.
Monday morning came and the lab techs came to draw blood. The usual routine takes place. Doctors start making their rounds. So, I waited. Around 10 AM, I heard a knock on my door. The door opened and my doctor walked in. And then another doctor came in until there was about 10 other doctors in my room, a pharmacist, and some other person that I didn’t know. So, between my head doctor, the other 10 doctors, a pharmacist, some random person, my parents, and myself, there were at least 16 people in my hospital room. It was really interesting to be the person everyone was coming to see.
The vasculitis specialist talked to me for several minutes as he explained what was going to happen with the chemo infusion here in a couple hours. He asked me about the chest pain I had been having. Part of the problem was not just the chest pain but the pain that would radiate down my left arm and cause it to go numb. This was really worrying to him. He also didn’t like the fact that the flare up that I was having was getting worse by the day.
Chemo Infusion #1
So, after the doctor and his entourage left my room, he went to sign off on the chemo so I could take it. Several hours later, my nurse walked in and said “it’s ready!” So, the protocol started. Fluids first with some nausea medicine for one hour, then Cytoxan for another hour, and finally, more fluids for another hour.
This all seems so simple and shouldn’t be a problem, except for the fact that my IV started hurting pretty badly once the second hour began. So, not wanting to risk damaging the inside of my arm with a possible leak, the nurses decided to stop the IV and change arms.
Except, with my tendency of bad IVs, this was not an easy task. The IV team was immediately called this time, instead of sticking me several times before calling them. The lady tech on duty started trying to find a vein to work with. Attempt 1: fail. Attempt 2: fail. Now, normally by this time in this process with everything that usually happens, people always say: “I hope we get it on this next one because the only other option is to go in through your neck!” Now, every single time they tell me this, I feel a little sick and just hope that that does not have to happen. I told my mom they would just have to medicate me strongly if they they were going to try my neck because I would pass out. Thankfully, Attempt 3 was successful.
So, the infusion resumed shortly thereafter, except, now I started breaking out in a small rash. I was then given Benadryl to help it stop. Thankfully, it stopped and I could finish the infusion. I just have the weirdest things happen. If it is not one thing it’s another.
I didn’t feel awful. I mean I really didn’t know how I was supposed to feel after an infusion. Whenever you think of chemo a number of pictures come to mind like getting sick, people losing their hair, nauseousness, and cancer patients. Except, I didn’t feel extremely sick this day, I am not a cancer patient, and I wasn’t supposed to lose a lot of hair. So, I really didn’t know what to expect.
However, I do know that I was drained. Think of your phone battery. You use it to communicate, connect with people through social media, check email, play games, and so on, but eventually your battery slowly drains and you have to charge it again. This is how I felt during and after the infusion. I felt as if my energy was literally drained out of me.
Thankfully, the rest of the night was pretty uneventful. I ate some food and tried to go to sleep. Tuesday came around. I wasn’t feeling too awful. I was a little nauseous but nothing like I imagined so I thought it was great. Because of the chest pain that I had been having, the doctor ordered an ECHO with Bubbles to check my heart.
ECHO with Bubbles
I don’t know why but every time I tell someone about this test they laugh. But I laugh too. I think it has to do with the bubbles. It just sounds funny. Anyways, thankfully this came back clear. Some cardiologists came to see me to make sure I was okay. However, even though the test came back fine, they couldn’t explain the reason for my chest pain. My doctors decided to put me on another Prednisone taper to help calm the flare up down.
I am grateful for this hospital visit for several reasons. First, because vasculitis is scary. Right now there is no cure. And everything happened so quickly. I was officially diagnosed with vasculitis and then told I needed chemo and then told I needed to go back to the hospital all in a matter of one week. Secondly, my vasculitis specialist doesn’t normally work in the hospital. He is a really busy man. However, God saw fit that the two weeks that he works out of the entire year in the hospital was going to be the same time that he wanted me in the hospital. God just never ceases to amaze me. He continually provides for me throughout this whole experience.
I was allowed to go home from the hospital Tuesday afternoon except, I didn’t go home. I went to see my brother play baseball and then went home.
Chemo is still chemo no matter how small.
Wednesday was really rough. I started to get out of bed but then I realized I couldn’t. My infusion had finally caught up with me. I was sick. I couldn’t move without starting to throw-up. Yes, my chemo is a small dose compared to that of a cancer patient. However, it is still chemo. I may not lose my hair like most chemo patient. Except, it is still chemo. I struggled for several days afterwards trying to find a balance of being upright and not feeling completely disgusting.
I spent the next three weeks trying to get my life back to normal…as much as possible with the way I was feeling. My mind was preoccupied with the realization that this was the first of three infusions. A month later I had a follow up appointment with my specialist . . . but more on that later.