Tuesday, September 28. I arrive at the infusion room early (instead of ten minutes late, like last time). The room and the infusion chairs are full of women – except one chair: mine. They all have pillows and blankets and only one is looking at her phone.
I reject pillow and blanket, respectfully, and open the Kindle app on my phone, hoping to get in a little reading about ulcerative colitis. I will only be here thirty minutes. I don’t know how long the others have been here, or will be. It depends on what is being pumped into their veins. My friend Anna is getting chemotherapy (breast cancer) and her infusions take three hours.
I should have gotten the pillow, at least. I nod off before I have read two pages. I wake up three times. Twice, when the blood pressure cuff around my right bicep tightens and once when the machine next to me beeps loudly to signal the end of the infusion.
I can feel fatigue and drowsiness on my head as I wait for the bus and even stronger on the bus, where I have to struggle to stay awake and not miss my stop. I have gotten used to fatigue over the past three or four years and I am completely tired of it (no pun intended). There are days when I have to drag myself to the bathroom…in my own apartment. The theory is: ulcerative colitis is responsible, in whole or in part, for my insomnia and fatigue. If prednisone and Entyvio get my UC into remission, the insomnia should disappear – and the fatigue right along with it.
I hope so. I am fighting sleep just writing this. But, if I lay my head down right now, I won’t sleep for ten minutes.
Net infusion: October 26. It is supposed to take around two months for Entyvio to take affect – for the effects to be noticeable, if the drug works. The first infusion was September 14, so I should know if it has worked for me by mid-November.
Fingers and toes crossed.
Mark Earnest Johnson 