“Courage is resistance to fear, mastery of fear… not absence of fear.”
Caitlin had her last infusion of Actemra last Thursday. At least, that’s what we currently believe.
It had been four months since her last infusion. The protocol for the med is infusion every two weeks, given it’s half-life. So, as the doc explained to Caitlin, two weeks after her June infusion - only half of the effective med was still in her system. After another two weeks, only half of that half – or one quarter…. and so on. So essentially, she has not had enough of this drug in her system to really control active disease for two months. And yet… all of her labs are normal and none of her joints are active. She’s been that way for over a year now. That’s enough success to warrant a shot at weaning off the drug completely.
We went for one last infusion – mainly as a boost to carry us into the dangerous waters of cold and flu season. A life-preserver that only has enough line to carry us for about a month… maybe six weeks.
You may wonder why… after the incredibly long and arduous journey to get to this place of control…. why would we risk a return to the roller coaster by stopping something that we think worked? Well, the fact is – this whole things is a balancing of risks. From the very first medications we agreed to give our daughter – it’s been a balancing act. What is worse? The potential side effects of the drug? Or the potential damage from the disease? How about drugs that seem to work, but are so new that there is little data on the long term effects? Black box warnings? And then – the obvious, continual and undeniable results of her uncontrolled arthritis – loss of mobility, pain, and eventual joint replacement? Which is worse? What we know is happening now, or what we think might happen later?
At this point, I can’t be sure whether something has been “switched off”…. but it seems so. We live with the statistical reality that it is entirely unlikely Caitlin, given the type and severity of her disease, will remain in remission. It will be back. We don’t know when. Days? Years? And we won’t have any warning. We won’t really even have a good idea of what might trigger it. One day, she won’t be able to get out of bed again and she’ll remember – REALLY remember what this stinking disease is. We all will. It will be back to the circus acts – the high wire and the roller coaster.
Now that we seem to be on a little bit of a platform – and have choice that is not based as much on immediacy…. we’re going to opt for a break. We’re opting for giving her system a break. I’m so grateful that med was here when we needed it – but frankly, it’s so new that we are literally walking blind as to how it affects somebody after years taking it. If it was the choice between that blind high wire and having her be able to function and live, I’d have to choose the wire and walking into the unknown. We’ve done that plenty of times! But we are blessed with that platform and a little more room – she’s functioning well, is in no pain. We’re tapering her methotrexate, which is the only medication she is currently taking. We aren’t even scheduled to go back to the doctor until January.
I wish I could convey what a miracle this seems to me! How, for so many years of drug trials and failures – the idea of remission seemed as real as a pot of gold at the end of the rainbow. I could imagine it, but it didn’t seem like achievable reality. We kept seeing different rainbows and chasing the sun through the storms, only to have all the pretty colors dissipate before we could reach the pot of gold. And somehow, we got here! It feels like fantasy, like a dream. We are afraid to wake up and find it gone! And yet, we’re choosing what we feel is the lesser risk for the moment, hoping the dream goes on.
We’re choosing to hold our breath, cross our fingers and make the best of each day as it comes…. just enjoying the blessings of our pot of gold.