What do I do now?
Tough decisions always come with a lot of emotional baggage, so let me be real with you. I am scared. Literally petrified that no matter which choice I choose, it will be the wrong one.
At my most recent infusion, the nurses drew blood for a drug-level check and scheduled me for a follow-up appointment in two weeks. I left with the knowledge that I would likely be getting my infusions upped from every eight weeks to every six, pending insurance approval.
I spent the majority of the time prior to my follow-up pissed off that I had to return–again. It felt like a complete waste of time. No one has been hearing me, they don’t want to listen when I tell them about the blood, the pain, or the headaches and they don’t want to talk layman’s terms with me or give me the full picture. So why the need for a follow-up? As in, why now? Why not a year ago when I came to them with a butt that looked like scar face, or six months ago when I was STILL complaining of fatigue, bleeding, headaches, a leaking bellybutton, and insomnia?
I predicted one of two things would happen: I would show up to learn that insurance, in a random act of benevolence, had approved the request for a dosing switch; or I would show up and leave just as frustrated and defeated as when I arrived.
I never prepared for the third scenario. The one where the nurse decides to shut the door on Remicade. I started this medicine in June of 2014, one thousand three hundred and thirteen days ago. I want more time with it; I want more days.
Why? Well, three and a half years ago I sat in a room with a nurse who advised me of the perils that go along with biologics. If you start a drug and it doesn’t work, you could effectively be cutting years off your life… or so it was presented. It seemed like a last resort, not a spur-of-the-moment whim. With less than a handful of FDA-approved drugs on the market, starting a biologic at 24 wasn’t what I had planned. But, as I said, I was never really given a choice; I picked my pregnancy and never looked back.
I have never regretted the choice I made; in fact, I would do it over and over again. What I do regret is not reading the material and learning the full scope of the medicine. At that point, I was so focused on getting better and going into remission to protect my child, that I never saw a reason to get informed.
Now that I am faced with the daunting realization that I am days away from getting a new med, I wish I had more scientific answers. The only ones I have are emotions and answers of the heart.
I am afraid to risk the decent days I have now for the potential to have more. I’m 27 with two little kids; I am not ready to give up on this drug. I want to run the clock; I can take the 3 or 4 weeks of feeling like crap if that means I can stay on the meds. I want more than anything to see my kids grow up. Maybe that doesn’t make any sense, and maybe the new meds really will give me eight better weeks…but if it were your choice, your kid, would you risk it? Would you risk the manageable for an uncertainty?
All that being said, the nurse told me that meds have come a long way in the three or four years since that appointment. She agreed that yes, they told patients the same thing I was told, and yes that might have been true then. She said, “Things are different now, we have new meds now.” She proceeded to list a few and there was only one or two that I had never heard of. That would have calmed me down, had she not followed it up with the statement that she wanted to give me 12 weeks on the new medicine before she pulled it.
12 weeks?! That hardly seems like enough time! That isn’t even two infusion cycles. How did she go from telling me not to cry, that there are more drugs available, to then talking about killing a second medicine – all in the same breath?
I don’t know what to do. I don’t want to quit this medicine if there is a potential that my low drug level has to do with something else, especially when I don’t have any antibodies. I also don’t want to keep beating a dead horse.
People tell me to do the research, but how? I’m not a doctor, I cannot read half the reports and studies, and the only thing everyone agrees on is that they have no idea how or why this disease affects people differently.
What do I do?