WARNING: May contain inappropriate language.
Doctor #5 presented this as a drug that he believes will work well for me. Why? Very few side effects. Well, huh.
My first infusion had to be stopped only moments after it began due to a headache. That horrid brain pain has decided to become a permanent resident in my head. The fatigue is worse than anything I have ever known. Even more strange, I feel depressed. I love my job and since Entyvio, I do not want to go to work. It is like separation anxiety when I have to leave my bed. I really do not want to. I used to miss going to my morning run or my evening walk, signing up for every 5K I could find and playing with my dogs. No more. It is very difficult to describe the level of disinterest I currently have for anything and everything in life. This is my favorite season and I love to be outdoors in the winter. I have gone outdoors once.
Yesterday I was scheduled for my second dose of Entyvio. I woke up and had pain in my groin area. I continued with beginning my day and realized I had swelling in a lumpy pattern. The left side of my neck hurt to touch it and also had a swollen lump. I called Doctor #5’s office. No answer. Shit. This is what happened the last time I had an issue on infusion day. I called my PCP (primary care physician). I was informed she is out on maternity leave. There is a fill-in available. I explain that I have some painful swelling and I am asked if it could be lymph nodes. Sure, it can. So I googled where I might find these things and sure enough, I was able to confirm that it is likely lymph node swelling. She then informs me that she will have to do some research before telling me to go forth with or cancel my infusion. I am pleased with this because I have another 3 hours before I need to be there and I provide the nurse with this information. She tells me that I should hear something before then.
Fast forward to infusion time. I begin my infusion and seem to manage well. My heart is racing and I do not like that feeling of fullness followed by the racing heart. I close my eyes and begin a meditation. About 30 minutes later, I ask why I haven’t finished my infusion and the nurse seems quite frustrated and apologizes as the machine had decreased the speed of the infusion quite significantly. She increased it and walked away. The headache that now lives with me began beating the drum to the beat of a migraine. Fantastic. Within minutes, the infusion was complete. As the IV is being removed, my phone rings. Obviously, I can’t answer.
When I returned to my car, I listened to my voicemail. It was my PCP’s office letting me know I should absolutely not have my infusion today. The reason for the lymph node swelling must be figured out first. The hell? That would have been good information to have about an hour ago. I did not return her call or even feel a certain kind of way. I have been experiencing an almost numbness lately. Instead of dealing with health issues that now consume my life, I decided to complete Christmas shopping today. I have had three items left to purchase for weeks and I have felt rotten so I have not gone. I finished my shopping and returned home.
This morning I have had a fever that comes and goes. 99.5 F has been the highest it has gone. I left a message with Doctor #5’s office. I work Monday – Wednesday this week so it looks like I will just have to deal with whatever is going on. I stepped on the scale and have gained another pound. How frustrating. If I am going to continue to gain weight I should at least be enjoying foods that contribute to such a thing. I really wish someone would figure this out as I feel like I could be teetering on a slippery slope with the weight gain.
Combining weight gain with the inability to eat foods unless I am home are two ingredients for a recipe I do not care for. I already avoid eating and only do so to survive. I do not need incentive to avoid meals for weight loss benefits.