Two weeks ago, I got up early. My husband woke our almost three-year-old, dressed him, fed him breakfast, and took him to school on his way to work. In a completely exhausted and achy haze, I dressed and fed our eight-month-old, snapped him into the car seat, and dropped him off at my mom’s house. Then I drove to my rheumatologist’s office to spend more than six hours sitting in a windowless room hooked to an IV.
The IV was the first dose of my new biologic medication. After initially failing on Remicade, I had been relatively stable on Enbrel for years. But after the birth of our second baby the Enbrel just didn’t seem as effective as it had been previously. So, when my son was a few months old, my rheumatologist and I made the decision to start searching for a better fit. I spent more than eight weeks juggling motherhood, dealing with excessive pain and fatigue, and injecting myself with Orencia. Unfortunately, I did not see any improvement of my symptoms from that medication. It was then that we made the decision to move on to Rituxan.
In addition to being used to treat RA, Rituxan is also used to treat non-Hodgkin’s lymphoma and chronic lymphocytic leukemia, which means I was basically in for six hours of chemo. They gave me some Tylenol and Benadryl as well as an IV dose of prednisone to counteract any potential side effects. And then I sat in a sweaty pleather chair for more than six hours while the IV slowly dripped $10,000 worth of medication into my veins. It made me a little bit sad to think about how needles and IVs had somehow become such an ordinary part of my life as a 32-year-old mother of two. And while I am certainly grateful these medications exist, since they give me hope for my future, I think it is also important to recognize my feelings of sadness about needing to depend so much on them.
Twice that day I had to get up and awkwardly shuffle my IV on wheels down halls, across thresholds, and around corners to use the bathroom. I wasn’t at a hospital but rather a regular medical office building – there’s a family practice across the hall from my rheumatologist and a dermatologist next door – so I have to admit that it made me feel pretty self-conscious to be shuffling through the hallways connected to the IV. But at least I am well enough to walk at all! I suppose there’s always a reason to be grateful.
After the infusion I was completely exhausted. I somehow managed to pick up the baby from my mom’s house and the toddler from school. When we got home I basically let them run/crawl wild until my husband got home from work. I didn’t bother to make any dinner for anyone and I went to bed as soon as reinforcements arrived. Over the next few days I dealt with some nausea and general icky, flu-like feelings, but luckily I didn’t have any more serious side effects.
Yesterday, I went in for my second infusion. Since I didn’t have any major reactions to the first one, this one only took four hours instead of six. I watched a movie on my iPad as the expensive medicine dripped into me. And though the infusion didn’t take as long this time I still felt like a complete zombie afterwards. As soon as my husband got home I was in my pajamas in bed. It wasn’t even dark outside yet.
If the Rituxan works for me, I won’t have to have another infusion for at least six months, which would be a nice change after stabbing myself with a needle weekly for the past few years. However, it will still take a few more weeks until we know whether the Rituxan will work. And I can’t really bear to think about what I will do if it doesn’t work.
Sometimes I’m not sure how to keep moving forward. It has been a long, long time since my RA has been under control. Months and months and months and months. The fatigue of uncontrolled RA (plus the fatigue of being a mother to two small children) makes it harder and harder to get out of bed every morning. I know that I need relief soon, but there’s nothing to be done but wait and keep my fingers crossed. And so today I’m trying to fight through the fog to keep moving forward.
One day at a time. Or, let’s be honest, sometimes one hour at a time. But I’m still facing forward.
How often you do experience an unexpected boost of energy?