At this point, I can't use that for an excuse. There is a lot that has happened since the last post, and it deserves to be dissected a little and then to be put to paper. Additionally, it is also my chance to update a number of people at the same time, answering what over the last few weeks have been my two most frequently-asked questions about myself.
The most frequently asked question has been to ask how things are going for me with the Interferon, if my body and mind are handling it reasonably well, and is it getting any easier or more difficult to deal with. The other question I'm getting the most is querying as to whether or not I know if the therapy is working, or when I'll know. I'll start there.
Approximately 2 weeks ago was week 8. I do the injection on Sunday evening, so that was injection number 8, and 4 days later I had my first comprehensive set of lab (blood) tests. Four weeks prior I had blood drawn that was mostly to make sure that the Interferon wasn't doing anything too deleterious to my body, but at that point it was too early to know if it was working. I didn't actually get peak blood levels of the drug until about week 4, so it's really not worth the expense of running the test to know if I'm having a positive response.
Small detour here to give a little medical lesson to those who don't really understand the physiology and pharmacokinetics at play here. If you're already up to speed here, feel free to check out for a bit. The best indication as to whether or not the therapy is working is to run a test to check my viral load. That means physically counting (by a computer, of course) an actual head count of the number of virus particles present in a specified amount of blood. The measurement used here is the number of log copies per milliliter of blood. Please don't ask me to explain logarithms, I'm not that great at calculus, and my understanding there is rudimentary at best. Suffice to say that what they are doing by checking log copies is to get a value that is more easily read by cutting out a bunch of zeroes.
At the onset of therapy, my viral load was about 2.3 million (log copies), which is high, but not by any means out of the realm of the ordinary in acute infection. It's a lot of virus, but not an outlying number. So to get to the point, my viral load at week 8, day 3 was undetectable. This is the eventually hoped-for outcome with Interferon, but it's not that often that you see it get that good of a response so quickly. I was, to say the least, both elated and a bit dumbstruck. I was hoping against hope that I would be in the 25 to 30 percent group that did respond to Interferon/Ribavirin (to be known hereafter as Pegasys), but I wasn't being so brazen as to expect that a good response would be so resoundingly good at such an early point.
If I'm coming across as not as excited as you might have expected at this news, I would have to say that it is probably because of a bit of disbelief. On the other hand, it's more likely that this good news has been tempered with a little of the good news/bad news syndrome stuffed into a big old reality check. Even though the response is so good, it doesn't shorten my course of therapy at all. It's still 48 weeks, mostly because I have Hep C genotype 1a, which is the subtype that is most tenacious and least responsive to Pegasys. As such, it is still the full 48 week course. And it's not getting any easier; to the contrary, it's more accurate to say that it's getting a little tougher each week. As I stated previously, I inject on Sunday night. That has meant for me that Monday is predictably a shitty day. As I've gotten further into the course of therapy, it's expanded out to Tuesday usually being shitty as well. Sometimes it goes into Wednesday or Thursday. A couple of times, it's gone all the way into Friday night or Saturday morning. It is never predictable, I can have a week that is crappy all the way into Saturday morning, only to inject on Sunday night, and then feel fine by Tuesday. It's not exactly like it's gotten sequentially worse, it would be more accurate to say that it's a crap shoot. I never know what I'll get when I roll the dice that week, but the big picture view right now is that it's not getting any easier. More accurately, it's getting a bit tougher as it goes along.
The other concern is that the longer I'm on therapy, the more likely it is that I'll have adverse events/reactions to any number of organ systems. It's already pounded my bone marrow (that wasn't that great to start with) enough to knock my white count precipitously and dangerously low. Luckily, there is another drug (injection, of course) that has been successful at getting my bone marrow to crank out more white cells. It's called Neupogen, and it's basically a hormone present in us normally that stimulates the production of white cells. To make the drug it's produced by recombinant DNA technology, and then grown on e.coli bacterial culture media (safe and non-infectious e.coli).
That's not the only organ system that has taken a hit so far. My thyroid gland is also taking a hit. Interesting that both of the problems so far have been to organ systems that produce hormones. Hormones are the chemical regulators that tell all the organs what to do and when to do it, so they are important. I shudder at the thought of trying to speak authoritatively about the endrocine system,or even understand that much about it; it's a very complex organ system. In school I probably had the hardest time with hematology (study of blood and bone marrow and their disorders) and endocrinology. How ironic that those are currently the two biggest concerns for me in regards to my health.
Now that I've made a short story long, I'll sum it up by answering the two above-stated questions thus: It's working and that is very good, but I have 38 weeks left, and that sucks balls. So I guess that all in all, I made the right decision, got lucky in the face of historically unpromising statistics, and for the time being it's full speed ahead, with lots of caution signs on the road.
One would think that with all the time that I've spent in my adult life obsessing about my health that this would be a cakewalk and that I might actually be used to it. In a way, I am used to it. You have to be when you live with a monkey like this on your back. But in another way, I'm not so used to it, because it never seems to be the same thing that is crops up twice; it's more like putting another card on the house of cards. I have made one rather astute observation recently though: it appears that I am unkillable. HIV has been trying for 26 years, and I've been supposedly been living on borrowed time for more than half of it. Then 2 different kinds of Hepatitis (A and C) within a two year span; still, my body fights on. I'm never quite sure whether it's a replay of one of the old circa 1940's war propaganda films where our boys always win, or if it's an off-screen real-life adaptation of Apocalypse Now. Sometimes I think it's both simultaneously.
Then, as if all that hadn't been enough, my car died on the freeway in the fast lane in the dead of night and I got rear-ended by a car going 65 mph that never saw me. The Explorer, or more accurately Ford Exploder, lived up to its moniker and burst into a blazing inferno, and me and my passenger AND my 3 dogs walked away, me with a concussion that I still have residual issues from, a broken finger that got jammed into the steering wheel on impact and bumps, bruises, scrapes, cuts and burns, gotten while I was pulling my dogs out of their mangled kennels with my bare hands as the flames from the gas tank were licking up my arms and torso. Two years later, if you drive past the accident scene you'll see a huge gouge in the freeway from when the engine from the Honda Civic that hit me got popped off its mounts and dug into the asphalt. You'll also still see burn marks in the asphalt on the freeway shoulder in the spot where the Exploder exploded, and the massive steel top rail of the guardrail snapped, when a big weld on a big thick piece of steel popped like a stick when my car careened into it.
Oh Lordy, it is fun being me,even if it is one hell of a ride. I swear, I must have the 9 lives of 99 cats. You might say "drama queen", and I'll say "possibly guilty, somewhat", but all of these incidents were uninvited guests that showed up at the door to the party called My Life. If I invite drama, it is not intentional. I would love, at least for a while, to have a boring, uninteresting, banal little existence. When I get tired of it I know how to stir things up, but for the time being, let's turn the volume down for a little.
I don't want any attention. To the contrary, I would be more than happy to be Mr. Cellophane, wallflower, slouched in the corner, ignored, quiet, observant and taking notes. Ironically I started doing drag 2 years ago to get myself out of this social phobia rut I was in, but now I wonder if I should have let the genie out of the bottle. I would love to get him back in and go back to being ignored and (assumed to be, but not really) uninteresting, but I'm not sure if that is possible. I've always by nature been an observer, an amateur sociologist, or more accurately, sociological anthropologist. I like to watch, unnoticed. That is one thing I always loved about being more of the aloof/socially awkward type: you can disappear and/or go unnoticed, but in reality, there is no better show than life, and when you stand back, shut up, open your eyes and take mental notes, life is the best free stage show in town. If you can chalk up any good from being bullied in school, I offer the following: 1) it makes you more observant, 2) it thickens your skin. There really isn't a lot of insults that you can throw at me that I can't let roll off my back; you do what you have to do to stay alive sometimes. And finally, 3) it teaches you how to disappear.
Don't get me wrong; when I am in my comfort zone and in the company of people I trust I can be quite gregarious. Sometimes that isn't the case, but I can do it. But put me in a crowd of unfamiliar people, especially in an unfamiliar environment, and I'll clam up on you faster than a mafia thug in an FBI interrogation. That's not changed a lot since childhood, except that I've just developed more social survival tools. I have learned this simple credo to be very helpful to me. I have said this many times and it still rings true: there are three keys for the introvert to maintain peace and sanity: Keep your mouth shut, your eyes open and your hands busy.
I have so many directions to go. I've been sitting on some of this material for over a month now, but it's 1 am, I'm tired, and the screen is starting to get blurry. Teaser alert: in one of my next few essays, the topic of discussion is about something that has really gotten under my skin lately: the social internetworking phenomenon. I'm as guilty as most; I have Fakebook and MySpace pages, but I hit them tonight for the first time in over a month, maybe even two months. I refuse to Tweet. Don't even ask, it won't happen. I don't need to know every time you take a dump or trip on a crack in the sidewalk. It really isn't that interesting to me. I text, but I am becoming increasingly aware of what a cop-out it is when you have to say something that is crunchy. It's a one-sided conversation without a voice.
But this is getting dangerously close to crossing over from teaser to spoiler. I need to leave myself at least a couple of nuggets for the next essay, because let's face it kids: I'm really not that interesting. I'm just really good at making myself sound interesting. So let me leave you with what may possibly be my final status update that I posted on FB and MS tonight: "Parry Tallmadge will be on an extended sabbatical from social internetworking. If you want to network with me, call or visit me. If you just want to know what's up, read my blog: doggydad.blogspot.com, which ironically is overdue for an update." 'Nuf said?
Doggydad's Life Now: The Viral Monologues by Parry Tallmadge is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
Based on a work at doggydad.blogspot.com.
Permissions beyond the scope of this license may be available at http://www.runnymedesilkys.com.
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