Once a month, I get up when the sun comes up, put on some leggings and a hoodie, and head to SUNY Downstate for my monthly infusion of Benlysta. This process literally takes my entire day, from 8:30-3pm. Come follow me, follow me, follow me down the path to getting the only medication created to treat Lupus.
The only reason I can get out of bed is the promise of sleep during the long process at the hospital. On days I have been allowed to flex my hours and get to go to work late, it's a nice rest. So, I throw something comfy and quick on and take the train there (parking sucks in the area).
I arrive at SUNY Downstate Medical Center and get on the line for outpatient registration. Low and behold, the woman who totally ignores my good mornings and checks me in is absent, leaving the older, less speedy man to register everyone by himself. The struggle is real. This process has taken anywhere from 10-45 minutes, just to have them put the bill in the system and print me a paper. I say thank you and head to the 6th floor.
I get to walk through the Cancer ward of the hospital to the chemotherapy unit. "Wait, I thought you had Lupus?" Yep, I do but the same guy that mixes the IV infusions of chemo and dialysis treatments mixes the Benlysta for my IV treatment. It's a big room where everyone sits in a wide circle with their own sea-green leather recliner and loud ass personal TV so they can watch Maury or Divorce Court during their stay. Personally, it's not fun being surrounded by cancer patients since my mom passed away from cancer a few years ago and chemo did nothing for her. But a gal's gotta do what a gal's gotta do. I get my vitals taken and blood drawn to make sure I'm healthy enough to get a treatment that suppresses my overactive immune system. Ohh and they serve free breakfast. Yay. (I wish there was an emoji that indicated my extreme sarcasm). I'm greedy so I eat it anyways.
Yes, two hours later, the results from my tests come back. My Rheumatologist has to check the labs and evaluate them. If the results suck (meaning if there's a risk of infection from a low White blood cell count or something like that), then I get my meds raised, sent home, and told to come back in a week. If all is decent, the order is made for the guy in the basement to get his double-double-toil-and-trouble on and mix a bag of Benlysta. The nurse starts me on a drop of fluids for a bit until it's ready.
I have no clue what the Macbeth witch is doing but it takes him forever to mix & bring up the Benlysta. So in the meantime, I get my IV of Benadryl which prevents me from having any sort of allergic reaction...and knocks me out like Fight Night. Here is where I catch up on any missing hours of sleep and not even the man screaming his excitement for not being some child's father on my neighbor's loud personal TV can wake me. I do wake for lunch which I usually request to be the Tuna sandwich and salad, and give away the soda it comes with. (I never understood hospitals that serve soda and fatty food to its patients. I guess that's how they stay in business.)
Finally, the bag of Benlysta makes its way to the IV line on the top of my hand. Still groggy from the Benadryl, I head back to sleep between answering work emails and the occasional phone call. This is the best part of the process: finally getting it and sleeping.
Beep! Beep! The IV machine signals that I'm done. I get some more fluids to flush my veins, and the nurse removes my IV. Since I'm on blood thinners, it takes a sec to get the blood to stop flowing. Once it's safe, the lil bandaid goes on it, completing my time in the Chemo Ward. I get asked to schedule the next one exactly 4 weeks away by day, not by date. It can be difficult making this decision without consulting my job but I've been getting better at it.
Overall, I'm still on prednisone so I don't know how effective Benlysta is. My doctor swears it's doing something. I don't know... But it's a part of my world, Take care of it ends up being in yours.