EDUCATION, PERSERVERENCE...LUCK

Tuesday, October 23, 2012

Rituxan Cocktail Time

No pictures, today.

I didn't have much of a drawing or painting day yesterday, because the better part of the day was spent in the infusion room. It was a scheduled event--every six months, for two days, two weeks apart, I succumb to the needle.

In fact, when I started writing this blog, some hundred-plus posts ago, it was less to document my trials and travails at learning to draw and paint, and more about initiating discourse about Sjogren's Syndrome and Rituxan, or Rituximab, because I'd read so many comments online that sounded so off-the-wall. Most were from people who had decided that the treatment was, to put it mildly, inadvisable. Some were from people who had taken the infusions, and then experienced agonizing setbacks like massive bodily infections that required hospitalization. That's the way of a lot of online discussion: tales of the extremes. Drama.

My experiences are rather mundane, and not scary, and I thought someone should tell that side of the story, instead of simple spreading fear and panic. Fear and panic are absolutely NOT what one needs, when already living with a chronic, degenerative, autoimmune disease.

Here's my typical infusion experience:

I arrive at the doctor's office and sit in a recliner, and am given two tylenol and water.

The kindly nurse starts an IV line/catheter in the crook of my elbow. It doesn't hurt much, but I usually do come near to fainting, and recline the recliner to get some blood back in my head. This near-faint passes in minutes, and saline flows. My blood pressure and temperature are checked, as they will be frequently throughout the day.

A dose of Benadryl is added to my line, and I get lightheaded.

A dose of steroid is added to the line, and I feel nothing. (But I surely do not sleep that night. WIDE awake.)

The Rituxan/saline bag is substituted for the plain saline.  

I have all the time in the world to do the Sunday New York Times Crossword, which I've saved from the day before, and to read. I have thought about using this time to sketch, but haven't so far. There's something about having an IV catheter in the crook of my left arm--well--I leave that arm completely immobile, or else I feel the catheter and start thinking about it a little too much and get faint. But it doesn't hurt. Not really. Just gives me the ick feeling.

Mid afternoon, the IV fluid bag is empty, I am detatched, and I drive away.  

Hopefully, these treatments are slowing down the progression of my disease, and although it's subtle, I do feel like it's helped some of my symptoms. Before Rituxan, I was getting to the point where I could hardly speak, the "Bamboo Nodes" on my vocal chords were so severe. There was talk at school about my having to use some kind of adaptive measures, writing every instruction out, using a speech enhancement device, leaving teaching...Now I have a somewhat gravelly voice, but not much more so than some raspy-voiced singers. Tests show that my lungs are functioning better--but the interstitial lung disease is still present, and always will be. Mainly, though, we are hoping that the treatments stave off the lymphoma that is apparently somewhat common in Sjogren's cases that present like mine.

So until two weeks from yesterday: back to drawing instead of infusing!

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