Finally -- Notable Improvement

My labs from yesterday point to a big improvement: CRP 43.2 , WBC 11.9, and a normal sed rate. Rah!

I didn't ask about any of the other numbers.

Pain levels are effingly high but -- in the context of these wonderful numbers -- who cares? Okay, I care. A lot. My behavior is out of line, has been for a number of days, directly related to pain -- although anyone with a brain knows that behavior is nothing but a string of choices.

I am being self-indulgent and making poor choices.

I had no fever yesterday, have beaucoup today. I actually feel slightly better with a fever. Go figure. Marmy and Sam-I-Am have just been caught with their paws in the pizza pie. Uh-oh.

[Some of this pain ought to be diminishing now that I know how little I was/am supposed to be using/moving my right shoulder/arm. How was I supposed to deduce a limit of 90 and 10 degrees in forward and lateral movement from the simple exhortation to "baby that arm"? This is what results from experiencing too many unusual surgeries with unusual post-op instructions -- I completely forget how to treat a "normal" shoulder replacement.]

There's little room to describe it otherwise: we had a thoroughly rotten time of it yesterday. The day before had also been long -- at the orthopedic surgeon's place. I started out the day tired -- sleep, none. We got there five minutes late but no problem because the Infectious Disease office had no record of my appointment, despite the fact that I go in every Wednesday, and had chatted with the PA on the phone last Thursday about rechecking the labs and continuing with the daptomycin instead of switching to zyvox. I made the appointment as we exited last week, else it wouldn't have been entered in my PDA, and not at a 2 o'clock time, either -- we usually do 11 am or 1 pm. Anyway, so we sat in the waiting area for two hours. Why, when it was their error, were we punished? The nurses even were snotty -- as if I was the one who forgot to register the appointment. I didn't get to see the doc -- waited all that time just to get the PICC dressing changed and labs drawn.

Lots of time in the room with the comfy chairs -- Fred sleeps through my hellish time with Sex-Addicted Nurse Gossipmeister.

That would be the nutty nurse who does the sterile procedures and coaxes blood out of recalcitrant ports. After a gaunt and clearly ill little old lady -- all of 4'10" -- tottered out on some amazing patent leather stilettos, wrapped up in a mink stole, she launched into a diatribe about the emotional guilt that is behind most cancer diagnoses. On and on she went, talking about how faith could cure but only iffen you wanted it, only iffen you had true faith... Until I blew up in her face. She gave a typical asshole response: i'm just sayin' followed by whatever topped off by yawn. I believe those phrases are claim to a policy of nuclear non-proliferation.

or something.
i'm just sayin'.
yawn.
whatever.
meh.

So she and I, we did not start out well. I don't know why I am compelled to tell truthes that don't need telling when I am hurting, and/or a tad pissed off -- it is like there is no room for anything else. Finally ushered back to the infusion area, she crows, "Looks like you had to wait a while! That's what happens! Well, you know, everything happens for a reason, don't you think [hum hum hum...]? The Lord is gooooood! Amen!"
[i break out in what is technically known as ick-hives. that'd be ick-inspired bumpy red itchy hives from all the ambient ickiness. in this case, pseudo-religious ick. ick!

marmy, what do you think? "*ack*-*ack*-*ack*"

right on, marmy!]


"No, I don't think. I hate that expression. Everything does not happen for a reason. That's ridiculous."

Talk about raining on someone's innocent, if clueless and often intentionally cruel, parade.

Good thing she didn't spout off about God opening windows when doors are slamming the hell shut. In mysterious ways and all. I'm just sayin'.

By the time we made it through rush hour traffic and got home, my right leg was double its normal exaggerated size and bright boiled-lobster red. The left was not so bad, but also had some bright red spots among its traditional purple hue. A few hours later was when the pain went ballistic, and hasn't let up since. The swelling and color are both better today, heading to status quo. Hopefully, my pain levels will follow suit.

I didn't take lasix, though that's likely what The Boutiqueur would have suggested (I take 40 mg prn). Why not? It seems a weird thing to do when the problem is mostly one-sided, that is, my left side wasn't nearly as edematous as the walrus-like right side.

Sitting on the toilet, looking at my swollen misshapen weirdly-colored legs, I was disgusted and could not and cannot imagine how anyone else would or could react with less of a serious gag reflex. It wouldn't be enough to take down all mirrors.

I would need to put my eyes out, too. Remember, though, to do it *last* as taking down the mirrors might require minimal vision.

Do 100 words on the moral dilemma: Shall I put his eyes out, too? Would the threat of having their eyes removed keep people at bay, keep them out of my cave?

It hurts awfully to try and stand, and the thought of the many trips to the bathroom, after furosemide, was daunting. But my hands are very puffy, too -- maybe I will rethink that decision -- tomorrow morning. Never add lasix to your regimen at night!

The Fredster and I are not doing well. It is mostly my fault. I mean, just read how I was treating Ms. "Holistic" Guess-Who-I-Slept-With-Last-Week Nursey. Yes, she regales me with her sexual escapades and there is this Bizarro Dr. Laura persona in me that creeps out when she does, wanting to say things like: you haven't even gotten your divorce yet and you have three young daughters who must be wondering what the hell has happened to their world...


Every week I explain to her that my arm shouldn't be rotated the way she likes to position it -- and week after week she nods in understanding, rotates it anyway, and then spouts a word of wisdom like, "They ought to do sumpthin' about that. Tsk. Tsk."

Right now I want to throw something at Fred. He plopped on the bed with a couple a'slices of pizza pie, grabbed the remote, changed the channel, then said, you weren't watching the news, were you? click click click

But, hey, how about them labs, bay-bee?

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!