Brought to you by the letter C

In my world of acronyms for illness, things starting with the letter C have an unhealthy predominance.

I mean, it's hard to ignore CRPS -- not for one hour, one minute, sometimes it cannot be dismissed for as long as a second. Today is such a day, but I know that it can't stay this bad, that if I can break the cycle, or just get through it to the other side, it should "ratchet down" instead of up! Yes, a socket wrench just might be involved...

But that is not the "C" that is really bitching at me right now -- no, that would be the C-reactive protein value that my infectious disease doctor spoke with me about by phone this afternoon. It's 68. That's apparently way too high. In fact, the closest I have come to that during all these months of infection and inflammation is 18.

We went trucking off to another doctor's appointment today -- to see Dr. PainDude, my pain management guy. He is a physiatrist, a doctor specializing in what is called Physical Medicine. In other words, he is so bored by me that I have not actually seen him, except to shake his smarmy hand, in almost 6 months. Instead, I see his Nurse Practitioner. I have decided to be thrilled by that, after spending *way* too much time being pissed about it. Why? Because she is simply better than he is. She has made innovative changes that have positively impacted the quality of my life.

She has made innovative changes that have positively impacted the quality of my life.

I cannot imagine a more wonderful thing to say about someone who is managing an aspect of my health care (with my "partnership," yadda yadda). Really, I can only count three or four people that I could honestly put in that category. Everyone else is very competent. These others, though? These three or four? They are so beyond competence -- they have some aspects, each according to each, of visionaries. Beyond: that's really the right word. They see beyond where I am stuck today -- sometimes seeing trouble, sometimes seeing that I will come out the other side of whatever nonsense is bothering me -- unscathed.

The Infectious Disease people are not on my team. I just cannot resign myself to the notion that they are a permanent fixture. Still, I am spending way too much time at their offices and decisions are being deferred to them by some of the people I am touting as "visionaries."

They're okay, I guess. The trouble I have with them is that they are excessively reactionary. If I were to even suggest that my left nostril itched, they would order stat blood cultures x 2.

So at first, I was nonchalant at having a C-RP of 68. No biggie. But the voice on the phone kept saying "quite high, quite high, quite high." And the voice tossed in a high white count. (The incredible news? My sed rate was TWO!)

Then this person lied to me. My surgery was ten days ago. "Sometimes it rises after surgery, so we will check it again next week. It ought to start going down by then." J'étais tellement déçue.
My surgeon had already checked the C-RP in hospital and it was something like 14 -- he was pleased. That was, I think, about 48 hours out... *and* he explained to me that the reason people were deferring some decision-making about infection to the C-RP value was that it was very responsive, time-wise. That is (I am clear as freaking mud today) -- it reflects the current situation pretty well. He was further encouraged because the results were trending downward.

So ten days after surgery, one shouldn't still be getting values that have been skewed by the trauma of surgery itself. And should a change be effectuated, it won't take anything like a week for that to be reflected in the lab value.

It's a small thing, this lie. But I don't like it; It does not inspire confidence. Tell me instead how we are going to proceed should this mean I'm still "infected." Tell me, above all, that daptomycin is the right antibiotic for me to be infusing into my vein at night. Tell me how you know that without having recourse to a positive culture result. Are you making the assumption that treating for gram-positive bacteria is worth ignoring those sly gram-negative guys? Is it the positive MRSA that I had a few months back? Come on -- the intra-operative cultures did NOT grow it! It's just in my freakingly cute incubator of a nose. And one armpit -- a pit that had issues. (I'm just sayin'. I kept it as clean as possible under very difficult and hygiene-challenging circumstances. And then along came my friend Hibiclens...) It tested negative twice in the past three weeks.

Toot, toot! My train of thought runs away again. (As always, a very grateful nod to James Thurber.)

Before I regain the track... Sam-I-Am just got his comeuppance. I had been gnawing on the stray crust of bread on a plate next to the computer -- bread that was, mind, well-spread with hot mustard, all the better to go with the sliced turkey. Sammy grabbed the remaining piece of bread, fairly *slathered* with that mustard, and began his escape from the room. Like a cartoon, he came to an abrupt and startled halt as the mustard registered on his rough pink feline tongue. He dropped it -- mustard side down, of course. Oy, my carpets! He would pick the only eighteenth century Karabagh rug in the whole of Our Manor, Marlinspike Hall. Imagine the result of hot yellow mustard on this, one of The Captain's most prized antique rugs of the Caucasus:


(Somehow, despite it being "correct," I cannot bring myself to call this a caucasian rug.)

The CCCaptain. The CCCaucasian rug. CCCRPS. CCC-reactive protein. CCCCCCCrraaaapppola!

I'd best stop this evidence of a meltdown before I truly get lost inside the alphabet. I am thinking of settling down with Fred and taking in a flick or two... popping some illicit ibuprofen to kill this fever (100.5!)... maybe popping some corn, too.

I've neglected to write about the biggest C of all, cancer -- because I am tired and sad of thinking about it. In addition to its presence here in the blogosphere -- for young Henry died yesterday and my thoughts are with his mother, father, sisters, extended family, and ubiquitous friends -- it is striking down people in our real lives here, deep, deep in the Tête de Hergé. All of these people are valiant and victorious in living good lives and modeling a good death.

I received my copy of Hospitality today... Ed Loring wrote, in an article that includes the news that Murphy's cancer is back (Our Cancer Journey Number Four, he calls it) -- "Time comes. Time goes. We are born. We die. As Dylan Thomas grieves past grief knowing "that good night" is somewhere amid the stars, he laments for me and maybe for you:
Oh as I was young and easy in the mercy of his means,
Time held me green and dying
Though I sang in my chains like the sea."

He, Murphy, and Hannah attended Jack Edward in the days and hours before he was killed. Jack said to them that he was prepared for death but not ready for it. And so, of course, Ed cannot resist asking us:

"How about you? How do you want to die? Are you prepared? Where you gonna run to when the FBI eyes you?"

I cannot think of Murphy without thinking of Lucy.
Enough! Enough, already!