Set Back

April 12, 2007 at 1:57 pm (Uncategorized)

In case you haven’t noticed, I’ve been avoiding the computer screen. There’s some strange alchemy that takes place when my fingers tap out words for the world to read. It makes the circumstances of my life feel real– very real. Once I’ve posted the details in black and white, it’s hard to run away from the truth. And running away from the truth (or else just tip toeing around it) is sometimes the easiest way to deal with bad news.

On Friday, I went to the rheumatologist in Billings and learned that my two months of Enbrel– the most recent drug my doctors have tossed into the open jaws of my sarcoidosis– is not working. My sarcoidosis-related arthritis remains about the same (except for a minimal easing of the pain for a day or two after each Enbrel injection); my highly abnormal liver levels (attributed to sarcoidosis) persist in abnormality; the various sarcoidosis-related factors in my blood are virtually unchanged; and now, I have a sarcoidosis skin rash on my arm. What all this means is that the Enbrel/methotrexate combination doesn’t even seem to be containing the disease to certain organs.

The rheumatologist says it’s time to try something new. In about a month, unless my health has dramatically improved, she wants to switch me from Enbrel to Remicade (the brand-name for Infliximab). Remicade is a more powerful anti-TNF agent in the same family as Enbrel. Like Enbrel, Remicade acts to reduce the amount of active tumor necrosis factor, which prompts an immune inflammatory process. However, Remicade needs to be intravenously delivered at a medical facility, and stays in the body for much longer than Enbrel. This means if I opt for the Remicade, I’ll have to get infused with the drug at a cancer center (given the limited medical facilities in Montana.) Supposedly it takes about a half day to have one dose infused into me.

Now is the time to deliver my normal caveat. Things could be worse. They can always be worse, and there are lots of people with more pressing, more life threatening, and more debilitating conditions than mine now. I know this. But I’m still overwhelmed at the rapidity with which my body dispensed with the Enbrel. I feel like I failed in some way, like I’m not trying hard enough to make these drugs work. And I feel like no matter what I do next, it too will fail, and I’ll just have to go back on 60 mg. of prednisone a day and continue on my quest to become the human being most resembling the Stay Puff Man.

Part of living in chronic town is dealing with setbacks. Intellectually I know this is true, but, in my heart, I feel pummeled by what seems to be a litany of downturns and failures. The disease has left me fat, out of shape, in pain, with a heart condition, and a liver condition, and a joint condition, and now, apparently, a skin condition.

What a chronic illness like sarcoidosis does is sap you of your resiliency. Sure, anyone can cope with a setback here, a diagnostic side shuffle there, but three long years of chasing sarcoidosis around my body has left me brittle and sensitive to every minute vicissitude of this disease. I want to be Super Woman and say to myself, “So what the Enbrel didn’t work! I’m ready to give Remicade a shot! I’m excited for a new opportunity to squelch this disease!” But I’m not Super Woman. Instead I just want to crawl into bed, pull the covers over my head, and pretend the world doesn’t exist.

It’s odd, too, watching other people react to my latest news. See, when you’re not living something, you can take each event, each bit of news in and of itself. You can digest the fact that I’ll be starting a new drug, and then move on. What’s the big deal in having one anti-TNF agent fail if you can just try another? And what’s a little time in a cancer center? Maybe I can catch up on my reading, right? What you don’t have, though, is the three years of utter exhaustion from trying every possible remedy, traveling to different doctors, being tested and operated on, gaining hope only to lose it and then gain it again, being told I won’t live long, being constantly sick from secondary infections. Every bit of bad news I get now has to first travel down that long pipeline of history. And every bit of bad news now seems to make me reel, and then hide from it.

For now, I won’t try to force myself to think positively. I’ll just work on not hiding, unless I really need to dive under those covers.


  1. Nancy said,

    Rebecca – I have had the 24 hour flu/cold everyone else had….this whole week! and am experiencing the mouth sores and stiffness that everyone “handles” with Tylenol. Feeling like a slacker – know that everytime I deal with what everyone gets, my symptoms are louder, longer, stranger – I can handle the recovery taking longer – I am just tired of the turns and twists. I am on my 4th year of this active period and keep feeling more defeated and like a failure everytime I don’t experience that……burns itself out pronouncement. Keep trying – maybe one of these measures will be your pilot light for burning out! Nan

  2. rebecca said,

    Nancy, I’m so sorry. I totally relate to the twists and turns and the fact that everything takes longer to heal. I went to the dentist the other day, and even dealing with a bad tooth turned into an ordeal. Somehow, we’ve got to accept and expect that everything (medically speaking) will be more complex and prolonged…now, if I can just figure out how to do that! Please know you’re in my thoughts. Hang in there.

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