Are you prepared for your biological drug to stop working?
When I started Remicade 3.5 years ago, I steeled myself for the possibility that any infusion might be the last. Easy enough in theory; you tell yourself it won’t matter, you have options, that every day on the meds is a unique and blessed opportunity.
What you don’t do, is actually prepare for the day the meds no longer are an option.
Although to be fair, I don’t truly know that Remicade isn’t an option; I don’t actually know much of anything right now.
I walked into my appointment on Friday and before I could even sit down, the nurses had me cornered, telling me no infusion would happen because I had an infection. They asked to see my belly button and explained that my PAC would be in soon to do an exam.
My GI arrived, too. They asked me all sorts of questions: did I have a fever? Chills? What kind of stuff was draining from my belly button and how much?
I can be honest and say…I wasn’t really sure what all I was being asked. I sort of became something outside myself.
The concern: to infuse or not to infuse.
If I do, in fact, have an “infection,” an intracutaneous-something, a pocket or an abscess, the meds could make it worse. If I don’t, well then I’m just playing a game of Risk with my antibodies and myself.
Both the PAC and the GI were insistent on my having an MRI. They actually ordered it STAT. I thought that was only something they glamorized in the movies, and on tv. They wanted me to have a specialized type, MR Enterography. It is a type of imaging used with contrast to get visuals of the small intestine.
The potential pocket is somewhere between the skin and my small bowel.
The Infusion team tried to move heaven and earth to get me seen on Friday. Insurance told them they would call me with an update; however, they didn’t give a timeframe. I live an hour+ away from the clinic and have no cell service at home. Essentially, I couldn’t go home and run the risk of not getting the call. Not to mention, if they were to schedule me, I wouldn’t be able to get there in a timely manner.
Red faced and overwhelmed, I walked myself to the end of the third-floor hallway and sat at the bay window, to wait. To wait, and cry.
I had to try and pull myself together.
One of the nurses found me and asked if I was okay. I tried to explain my predicament without sounding like a miserable burden. A few minutes later, another nurse and my PAC came out to get me. They told me to relax at my infusion chair; It was an incredible display of compassion that gave me a small semblance of dignity.
I had no idea that I would be waiting 7.5 hours.
At no fault to my team, the insurance company wouldn’t play ball. The best they could do was Monday.
This whole “ordeal,” might be a new beginning, but it’s the end too; one I’m not ready for.
I am supposed to be hydrating, but each sip of water burns with what-if’s. I don’t know how to turn my brain off and not stress about the unknown.
I keep going over every worst-case scenario. What if I need surgery? What if I have to spend Christmas in the hospital? What if the infection is really bad, and I knew all along? What if I have to stop taking Remicade? What if…what if…what if.
My sense of validation is being over shadowed by my tangible fear of what might be.
In addition, I didn’t get my infusion. I am tired, rundown, existing (it feels) to serve the never-ending headache. I look at my kids and I cry.
I know that it doesn’t matter what the results say, it’s what I do with them that matters.