Treatment: Day 1 pt 1

I thought I might be able to "live-blog" yesterday, but it didn't work out that way. With all the time in the car (3 hrs each way), I needed to know how to post from my phone and I hadn't looked into that. As it turned out, I wasn't able to do much while sitting for the 4 hours of the infusion, either. So, I offer this report after a good night's sleep:

It was a fairly uneventful 3+ hour drive down. We did run into some traffic on The Turnpike and had to call to let the clinic know we would be late. No big deal. As is usual for me, these days, I was disoriented most of the time. Before we even got to the highway, I was asking, "Where are we?!" After 5 years, this is still disturbing to me. I used to be so good at navigation. Just one more reason to appreciate my iPhone. (a recent acquisition, so I'm still in the honeymoon phase with it.)

I had been told that I needed to be well-hydrated with electrolytes, so we had a couple of big bottles of Recharge on hand and a bag of sea-salted chips. I was also told that I could eat during the transfusion, so we stopped and picked up lunch at Rein's Deli, our favorite stop anytime we're heading south on I-84. As a ex-New Yorker, I miss the delis in Manhattan and Reins offers me a moment of 'saudade'. (wow. what *isn't* on the internet any more?! I can give a link to explain 'saudade', that's awesome.) While I'll often indulge in a Reuben, yesterday I got an egg salad sandwich. Yum.

I wasn't in the mood to talk much. Early mornings are really difficult for me and getting in the car with the roaring of the tires, all the sounds of traffic, the morning sun burning my eyes, etc leaves me very unsociable. Add to that the anticipation and anxieties of heading to a first intravenous treatment and I was downright curmudgeonly with not the slightest amount of grace about getting the worst cup of tea. Ever. (ya know, tea won't steep if you put the cream in right way?! and it really won't be palatable if its only lukewarm to begin with. ugh. sigh. Yes, I still adore Rein's but they need a tea education.) I buried my self in a fantasy book. (I'm not sure how I feel about starting a story with at least 13 volumes. Will I feel unsatisfied with such a long term of incompletion? Or will I enjoy having this world to be absorbed in? Sometimes, I actually grieve a little when I finish a book or a series, having loved the experience and the characters I'd been drawn into.)

We arrived at about 11:20 for an 11:00 appointment and were told it would be another 15 minutes. I love my doctor and I admire that everyone working there seems to be in good spirits and enjoying their work. I can't stand the new offices, particularly the waiting room. Buzzing green fluorescent lights, tight space with video arcade machine and wide screen TV, a door that slams shut when not closed with care and the receptionist window which slides on ball bearings to make a sound which feels like your brain is being ripped open with a zipper pull. I have to manage the growing rage that comes with the ongoing sensory onslaught. You'd think a neurologist would have more sensitivity to this. I do realize that as a doctor who has opted out of the insurance game and is doing all he can to treat patients in desperate need, that he likely can't afford opulent office space and is keeping his overhead costs down. That's the rational part of me, appreciating his devotion and sense of mission. My lizard brain doesn't process it that way.

I brought knitting, but couldn't really focus on what needed to be done next because it required some thinking and planning, so I just wove in ends. There were plenty of ends to weave in and that's a tedious task, so this was a good use of that time.

"That time" was considerably more than 15 minutes. I was finally called back into the infusion room at about 12:30.

Things were lively, nearly hectic, in the infusion suite. Two people were already in the room filled with reclining chairs. Each with their own satellite tower holding their personal container of fluid, connected to them via long, supple tubing. Another woman was getting a 'midline' installed and receiving her operating instructions and being oriented about what to expect when the nurse comes to her house once a week. She was cheerful, but clearly a bit anxious and seemed overwhelmed. I'd be overwhelmed, too. They handed her a box that was about 30" cubed full of supplies which have to be refrigerated. If I had to put all that in my fridge, there'd be no room for food. We joked about the infusion diet, but you could tell hers was nervous laughter.

I waited for the nurse to finish up with her and to prepare my setup. I was informed that it was standard practice to give the patient Tylenol and Benadryl before an immunoglobulin infusion. There was concern that my system is very sensitive. The two nurses talked to each other about what to do and then one of them went to talk to the doctor. It was decided that I would have Claritin, instead of Benadryl. I've never taken either, as I don't recall ever using an antihistamine, so I have no idea why Claritin would be better than Benadryl. I simply complied and swallowed.