Mostly good news...except the answer to "how am I the same as a ranch-style home's roof?"
Posted Oct 05 2009 10:03pm
I got a call a couple of days ago from a nurse at the clinic just checking up on me. She didn't seem light the brightest bulb, SO I AM TAKING THIS WITH A GRAIN OF SALT but...she did relay good news from the same blood tests that I'd done in my last days at the clinic there a few weeks ago now.
She reviewed with me the level of the M-protein under electrophoresis, which is the "can neither confirm nor deny, Senator" reading. In her words, "as researchers, we would consider this to be zero." Sounds great!!!
I then had the presence of mind to ask about the immunofixation test. More good news. I don't have an actual copy so the words may not be exact but they are pretty close. "There is an indistinct lamba band in the gamma region where the original monoclonal protein was observed -- it cannot be ruled in or out." That, also, sounds like zero or damn close to it.
I am waiting to hear it from BB officially, but collectively this sounds like formal Complete Remission to me.
The swelling is MOSTLY down from this thing implanted in my shoulder but I'm starting to realize a couple of things. First, just because the world's foremost MM specialist works out in the sticks doesn't mean that every doctor there that's not affiliated with his clinic is any good. I may have had general surgery performed on me by a barely-passed-his-exams moron. Hmm. Secondly, this portacath isn't quite as small as I figured. I can feel an outline about 2" by 1.5" that's sitting in me like a thick credit card. The swelling is still too pronounced to know where the little bumps are, so I haven't had blood drawn yet. Next week is my target.
Speaking of little bumps...now to the unfortunate news. Turns out what I thought were spider bites are not, in fact spider bites. Like a roof on a mid-century house, I have shingles. This is not unheard of in people with compromised immune systems. Every day we went into the clinic or the infusion center, there's a sign saying "if you have come into contact with the chicken pox virus, please alert a nurse immediately." This is the reason, really, for the daily Acyclovir -- which I have taken in general but I've missed a couple of days, which I'm now regretting. It's far from certain that it would have prevented it.
Never having had this before, it is pretty painful. I've got it on my left side in a patch about six inches square and it feels like a bad burn. I'm going to call the clinic later today to let them know. My hunch is they will ask me to double up on the Acyclovir and potentially also go on Dex...the latter of which I *really* do not want to do but obviously if that's what they prescribe, then that's what they prescribe.
Otherwise, the only real side effect is exhaustion. I need to get out and exercise but both the surgery on the shoulder, and now the Shingles, will prevent me from doing so for at least another week or two. I tried to swing a golf club the other day, and the good news was that it didn't hurt. The bad news is that out of 40 swings, I missed the ball completely three times, and the rest of the time it went 30-50 yards, barely getting above the ground. I'm by no means a good golfer but this represents a significant decline in the quality of my swing. Not sure what it is, but it will work itself out. I hope resolving the Shingles will be as simple.
I plan to return to the office on November 16th, and start working from home sometime in October, pending how well my physical therapy goes (and, of course, assuming that my visit to the clinic in a few weeks doesn't turn up any unpleasant surprises).
One observation I had: normally, I am a workaholic. I was unemployed, essentially, while waiting out the end of a contract I had for about three months in 2003 and I was going stir crazy. I expected to be climbing the walls missing my job this time around. However with minimal exceptions, I haven't really thought about work. I found this very surprising.
But, interestingly, on the day I more or less realized that I'm in CR or headed there pretty quickly, I had the first rumblings of restlessness. I think subconsciously, I have been very, very focused on my health and have been able to put everything else aside without even really noticing the degree to which I was doing so. As soon as my subconscious accepted the fact that I was not going to die from MM, a switch flipped that allowed me to contemplate my job again. Pretty interesting and probably food for thought for others that are undergoing similar journeys.
Well, that's quite an update. I'll talk with the clinic today about scheduling our return visit and Shingles treatment and if there's anything enlightening, I'll post it here!