The Cohiba

I am not an expert on cigars, but I like them. I've had my share of experience with tobacco from dipping snuff as a teenager (a rite of passage among the ranch kids I hung with) and smoking cigarettes in the Army (at a tax-free thirty-five cents a pack, it was no wonder most GI's smoked). I gave up tobacco in college, although I went back to the weed now and then in the years following. But I hate to cough and I like to run. That's incompatible with cigarettes. And since I don't work outside, the frothy cup of the indoor snuff dipper would be my constant companion and bane. Add to that having kids to set an example for, tobacco was just incompatible with the rest of my life.

Putting tobacco back down after an occasional dalliance has never been a difficult thing for me, so I don't go out of my way to avoid it. When a co-worker who had been out of the country on business handed me a few cigars that he alleged to have come from an island nation with whom my country discourages trade, the allure of forbidden pleasure was too much to pass up. I received the cigars some five years ago and had kept the last one for a special occasion. I guess completing a 48-week course of interferon and ribavirin would qualify. On Christmas afternoon as the rest of the family napped or explored new toys, I found a sunny spot in the back yard and lit up. All I can say is that it's a good thing that the things are a) illegal in my country, and b) priced around $12 each. Absent those two factors and they could become a habit.

Merry Christmas

I'm now just about 96 hours post-treatment. I'm feeling the sides from the interferon, mostly fatigue, but I'm enjoying not feeling the ribavirin "hat" — the pressure that forms across the middle of my forehead and encircles my head. Correction: past tense. I don't feel it anymore! That's a serious improvement.

Saturday, the second day post-shot, we went up to see our friend J and her mom in central Arizona. Whether it's chemical or situational, I was much more engaged and maybe even fun to be with on the 90 minute drive. The kids laughed, although I couldn't tell for sure whether it was at my jokes or at me.

I mentioned last time that J has fought ovarian cancer and that it looks like it's back. She and her mom, "M", take care of a nice little house and make whatever money they can through crafts or doing bookkeeping and billing.

Bluntly, the situation looks bleak over the long run. J has a bit of life insurance that will allow her mother to keep the house. She has no medical insurance and a lot of debt. She divested all of her assets putting them in her mom's name and keeping the debt in hers. Nonetheless, she is feeling good right now and stays in the present. A few weeks ago I talked with her about options and she said that she's not going to go through another six-month round of chemo with a 15% chance of remission — remission here defined as pushing the inevitable back six months. She really can't see the point. She's my age, which has brought reality home to me more than once. If she finally decides not to take the chemo, the cancer will not have beaten her and she will not have given in. She will have taken a hard decision not to be defined by her disease. It looks like we're in for another rough year.

J and her mother's avocation (not to mention distraction) is a prolific tribe of feral cats that has adopted them, and which they feed excessively. They remind me of my grandmother who at one point also had a dozen or more cats hanging around. When we were up there before Thanksgiving last month, M, the mom, commented that she'd spent nearly $70 in November on cat food. With my rural background, I might approach the issue a little differently, but it's not mine to say. I privately wondered how long the situation could sustain itself.

The tipping point arrived a couple of weeks ago. They got a cold snap followed by some snow and the hoard of kittens came down with some kind of respiratory infection. Naturally, the kittens went to the warmest spot they knew when they got really sick — M and J's patio. And naturally more than a few turned up dead. It took a lot out of J to spend a week burying a kitten or two every day.

When we were up there this week, they had brought three kittens inside and had set up a kitty infirmary in a bathroom. One appeared to have made it last week and they found a home for it. A second was looking very weak on Saturday and died the night we left. Then there's the third.

Guess who has a new kitten.

My oldest daughter's cat is now sixteen and starting to fade. She's doing pretty well, but the arthritis in her hips is getting worse. My younger daughter got a kitten for her birthday this past summer (three guesses from whom). We got a fair amount of not-so-subtle pressure to take the new one. Alright, alright, whatever. I choose my battles judiciously. Sometimes an appeal to common sense, reason, and practicality is more trouble than it's worth in the long run. We won't have three cats for very long. Needless to say, the kitten is very cute — a calico with a brown patch over one eye and a butterscotch patch over the other — and a fighter. When the dog comes to visit she growls and hisses and doesn't back down for a second. Mother Nature's system is brutal, but it does find the fighters.

Christmas Eve

Several years ago we fell out of the tradition of Christmas Dinner. The time leading up to Christmas is too crazy and Wife didn't want to spend Christmas cooking. We now instead have our big dinner on Christmas Eve. A couple of years ago we made a standing rib roast. It turned out really good that year. We hadn't done it in a while, but this year Wife found one at a good price. I think it's going to become a regular tradition. Wife still had some wrapping to do, and I told her I'd take care of dinner. I spent a couple of hours in the kitchen on my feet. No way I'd have been able to do that last month, or even last week. I enjoyed cooking it and it made Wife so happy that it's probably worth my time to plan a repeat performance. Maybe a New Year's ham and black-eyed peas next week.

It's done!

Last night I injected the last of 48 Pegasys syringes. A call to the doc the previous day yielded orders to stop everything after that last jab. No more ribavirin, no more Procrit, no Neupogen. Still got 3 Neups left in the fridge, but I took the last Procrit the day before. Tonight my cell phone alarm went off to remind me that I'm not taking any ribavirin pills. Cheering from the kids. I'm done with this part. I have a Cohiba cigar that I've been saving for a special occasion. This qualifies, although it will probably make me sick. Just as well. I don't need to get into a cigar habit.

Today feels much like any other post-shot day. Foggy, tired, a little down emotionally, and an incessant, accursed roaring and ringing in my ears. I'm long-used to some ringing, having tinnitus from a lack of ear protection in my immortal youth, but this is getting to be a bother. What's especially annoying is the low-frequency roaring that goes in time with my pulse. But that's okay.... This too shall pass.

We're going up to central Arizona to see friends for Christmas tomorrow. She has ovarian cancer that's come back after six months of brutal chemo and a year of remission. She showed up sick the year before my virus kicked up. Certainly does place things in perspective.

Now starts the wait. I'll go in sometime next week for a viral load test (PCR), and again in June. That's the one that counts.

To all who read this, be well. Be grateful. Be strong. Hold your loved ones close. If you're contemplating treatment or fighting the bug, know that there's an end to it. I may have done harder things than this treatment, but I can't think of one.

A Day At A Time

The AA folks are onto something with that "One Day At A Time" approach. The human psyche really can't can't comprehend the long term. We can make plans and talk about what's going to happen some day down the line, but we're pretty much along for the ride. Not quite like a stick in a river — we can choose which part of the river we will float on to an extent. But in real life, we aren't in charge of much. That brings me to a quote I found on another blog, http://www.hepcboy.com/: "I don’t believe in God but do believe in miracles." I rarely take issue with this extraordinarily bright and combative fighter against HCV. A previous non-responder or relapser, he's on the 72-week plan, which from 47 weeks appears as distant and daunting to me as the summit of Everest.

But I do take issue with that statement about God and miracles. I belive in both, being as how I dont' think you can have one without the other.

Gentle Reader, I'll spare you the apologia, but I do find it necessary to say that I'm a Christian, that I believe that Jesus is the Son of God, that he was crucified, died, and rose again. Literally. Whole kit and caboodle. Some stereotypes probably just popped into your head. Most of them are probably wrong. No, I do not think the world was created 6,000 years ago. I'm okay with the idea of evolution and DNA and with the idea of Adam and Eve being of a mythic (folkloric) origin. I could even make a case for homosexuality as possibly being a biblically valid lifestyle choice. But I won't because it's outside of my purpose here and I don't have a dog in that hunt. I hate abortion (I've seen three children in utero when they would have been legal abortions, no questions asked). But I don't think there should be an inquest every time a gynecologist does a D&C. Some things, I'm very happy to leave up to God.

The short version of the basis of my belief is that it makes sense for me. If what I believe doesn't make sense for you, then there's little I can say to dissuade you. I come from a Christian tradition that would gladly thump a non-believer or questioner about the head and ears with a bible. But that's not my thing. Nonetheless, I do believe that if God wants you, you can dodge Him all you want and He's still going to get you. My willingness to say something might make a difference, and I'm under orders to say something in this regard. So I say something, and let God do his thing.

What I believe is that people are hard-wired, whether they believe it or not, to worship. If a human chooses not to worship God, then they will, believe it or not, like it or not, worship something else. Western culture is lousy with mis-directed worship. Pick any vice, bad habit, fad, or profession. All of them objects of worship.

What are the consequences of believing or not believing? It isn't my place to say. Will my homosexual friend T. spend eternity in a lake of burning sulphur because of his non-belief? Will I be rewarded for my belief with a pair of wings and a harp? Honestly, I kind of doubt both points, and I'm thankful that it isn't mine to say.

What I do know is that whenever humans have tried to anticipate God, we've been wrong. Abraham was promised descendants "like sands on the seashore." He got what he was promised, but not in the way he expected. So I don't waste a lot of time puzzling out alleged end-times prophesies or imagining eternity. I just want to get through today, sometimes the next five minutes. But people have been tortured and burned at the stake because they didn't follow the dictates of some religious authority. My bet is that those guys were surprised as they entered Eternity.

Which brings us back to what I set out to write about. I've been able to get through this experience because of the grace of God and my own belief that I had help. Others may be strong enough to do it without God. Hat's off to them. I wouldn't have been able to make it. In short, I've found my life better with God than without, and during this trial, God has given me the chance to depend on Him. I think that He's active in my life in ways that I little suspect. As my dad said upon learning that he had cancer, "News like that will make you look at your hole card." I have taken a hard look at all my cards this past year. Grace is what got me through it. Someday soon I will run down the little synchronicities that got me here. As a Christian, I know where they came from.

But that's all I have to say to that for now.

"I can do all things through Him who strengthens me."
Philippians 4:13

And then there was one...

There's one Pegasys syringe sitting in the fridge. I injected Number Forty-seven Friday night. Sides are hitting hard. I feel like the stuff is just grinding me down. I'm thankful that this is the end of it. The 72-week program has to be brutal. I took my shot and went to bed last night about 11:30. I didn't get out of bed until 9:30, but eventually crashed again. After a while I figured out that I had a low-grade fever. I've been pretty much worthless all day.

We had a bunch of friends over Friday night (before I took my meds, of course). My wife's talent is project manageent. I've never seen a party that was so easy to put together or clean up after. She made a big pot of chili, put out some paper plates and plastic flatware, scattered some tables around with raw veggies and condiments, and we had a sit-down dinner for 25 people — five families, a dozen kids ages 6 to 18.

As the new year comes along I'll be starting a new project at church. I have an ulterior motive — it's to keep me going to the gym. Our church is about a half-mile away from the gym I go to. Like many churches, ours has activities on Wednesday night. Until I started this viral adventure, I would take the kids and then go over to the gym for an hour. Starting at the first of the year, I'll be leading a class at church. We'll meet at the church, read something Inspirational, and then walk, bicycle, run or skateboard over to the gym. There's a Starbucks next door, so some people might go over there. I don't care — my purpose is not to sell gym memberships. The walk alone would do some of our folks some good. Gluttony is a sin that many Christians fall prey to. I'm far too proud to fall for that one.

And then there were two...

I started this post last week and never got back to it. There are two Pegasys syringes in the garage fridge. Tomorrow there will be one. At this late date, you'd think I knew all about all the sides. No such luck. I'm finding new ones! My sleep pattern has gotten completely jacked around. I'm up too late — usually in front of this thing — and I'm having a terrible time getting up in the morning. I have a 6:30 AM call that I really should be on, but I only make it about one day a week. Night before last I looked at the clock at 1:30, 2:00, and 3:00, and made a point of not looking when it was probably 4:00. I'm getting that restless leg thing. I'm taking the anti-depressant Elavil (amitriptyline) which stopped the twitches in the first month. Doc has since upped the dosage from 10 to 25 miligrams after I told him that it didn't seem to be doing anything. I'm tempted to bump it again. On the other hand, this is almost a thing of the past.

I'm also feeling the psychological effects. It takes less and less to get the tears flowing — not really my ordinary state. My friend Bob says I should plan on that staying. I'm also crabby. I don't like that if only because it's rude. I hope that goes away.

Eldest Daughter's vocal ensemble concert was tonight. She's 18 and still talking about going to college in Iowa of all places. That child wouldn't last a month there. She puts on a sweater if it's 70°F (21°C). I talked with another dad at church whose daughter is already there. "Then they pull out that God thing," he says. My daughter: "I really think God is telling me to go!" Uh-huh. One year at this little college is the price of four-years at a state school.

The other dad said, "I'm good with that God thing too, but He put this thing between the bones of your head!" I told her that if God wants her in Iowa, He'll make a way for her to fund it.

Forty-five down, three to go

Opened the last box of four syringes last night. Getting close! I'm ready for this to be done. I'm not feeling terribly bad; I can't point to something and say, "It hurts here." But I'm just wiped. I'm sleeping a lot, but sometimes stay up too late. Sides are coming on stronger, especially the Sunday afternoon/Monday morning. Speaking of staying up late, I've been surfing too many other blogs (Hi, UC).

Speaking of sides, the cognitive effects are hitting hard the past few weeks and seem to be worst on Monday. That's bad, because work is truly nuts. All the issues I've been telling the project management about are coming true. Remarkably, they're doing exactly what I recommended (although they never listened to me long enough to hear my recommendations).

My wife has taken the month of December off work. She applied for a leave of absence under the Family Medical Leave Act. Ostensibly it's to take care of me (which is true enough) but it's also to giver her an emotional break. She's considering changing jobs because things have been crazy for her as well. Suddenly when she started making noises about leaving her little 30 hour a week part-time job, everyone is sitting around her with notepads and chart paper.

To bed. Lots of stuff going on tomorrow.

Slogging On

Five interferon shots to go. Six weeks or so worth of ribavirin. It is indeed the last long mile. From the far frontier of 42 weeks on treatment I speak with some authority. For me, the dominant feature of this experience is boredom plain and simple. I can't do stuff. I want to do stuff. My body simply won't let me. I'm too tired. I'm too achey. I longingly picture myself running around the block. Cleaning my garage. Hiking in the desert. Going hunting. Things will get better.

I've been thinking lately how I got to this point. I recently found the accompanying picture, which has a lot to do with it. It's in northern Italy about 40 miles north of Venice. I spent all but six months of my three-year career in the United States Army in the "Administrative Area" marked above. It was a Lance Missile unit that worked with the Italian Army. The site was decommissioned in 1992, according to the site I pulled this picture from. It appears abandoned now. It was old when I was there, having originally been an Honest John site. There were about forty of us in this little area. I was the Supply Clerk.

The Italian Army owned the missile motors and launchers, while we maintained control of the warheads. The warheads were potentially nuclear (one option for the Lance was the infamous "Neutron Bomb," which allegedly would kill people and destroy electronics, but leave the buildings and machines intact). I can't say for sure whether they were or not, but we treated them like they were. The warheads were stored a few miles away, but I haven't been able to track the location down; Google Earth doesn't have high resolution images of the area yet.

Our wartime mission would have been to provide missile support to the southern Alps when the Russians came west. It didn't take too much time studying a map to figure out that our task would be to control the passes through the Alps. Of course, we took it for granted that if we ever had to fire the things something just like it would soon be on the way.

The Russians never crossed the line. We were fairly confident that they wouldn't, either. As a practical matter, Gerald Ford was the President, Nixon having resigned just two years before. Memories of Vietnam were still raw. The Soviet Union was beginning to show signs of internal strain. Our comrades-in-arms were the Italian Army. And the missile crewmen spent hours upon days upon weeks drilling in how to destroy the warheads, never how to mount and shoot them. Keep in mind that we were working with the Italian Army. It was not a time of heroics.

Personally, I had joined the Army to be a tourist. I felt I wasn't ready for college and I wanted experience. That's a youthful way of saying I wanted to drink, do drugs, and get laid without having to explain things to my mother.

I had a room in the barracks, but after a year, I got an apartment in nearby Conegliano. I had a pass from 1630 hours (4:30 PM, to you civilians) until 0630 formation Monday through Friday. Unless I had CQ (Charge of Quarters) duty, i.e. sit in the orderly room all night and do communication checks on the radio, the Army didn't much care where I went or what I did after work or on the weekend. I spent most of it getting -uh- experienced.

Which brings us back to the topic at hand. How I got it. I smoked, snorted, drank, ate and otherwise ingested every hallucinogen, stimulant, downer, or any other psychoactive chemical that came my way. Once, in 1977, quite altered and in a mood for something new, I injected something. It may have been morphine. It may have been heroin. It may have been sugar water — I don't recall getting that high, and I was really disturbed that I'd done something with a needle.

At some point during that year — maybe before or after the needle experience — I got sick. I knew something was up, but I didn't feel that bad. I had a bit of a rash and a fever. Sometime after that, maybe weeks, I remember noticing that my shit was the color of peanut butter and wondering what was up with that. Unpleasant, but we're dealing with unpleasant things here.

Nothing else happened. Whatever it was, it was gone.

Or so I thought.

Some twenty-odd years later I'm a pillar of the community, with a career, a wife, a mortgage, and three children, I sign up for the blood drive at work. I fill out a questionnaire. Of course I never used IV drugs. Never. Not me. Only a fool would inject drugs. Two weeks later, the blood collection agency sends me a letter saying, in effect, "We don't want your blood. Don't come back. Go see your doctor."

I spent the next couple of weeks in a fog. It's a singular experience to hear that you have a potentially life-threatening disease. I shared the discovery with a friend. He's a diabetic.

"Let me get this straight: You have a disease that might cause problems someday, maybe five, ten years down the road, maybe never."

"Yes!" I sobbed.

He laughed. "How has your life really changed? A drunk driver could just as easily take you out between now and then."

My diabetic friend had been living with the disease that he can safely assume will kill him for twenty years. He knows he's not immortal. I was just finding it out.

Since that time, about a dozen years ago, I've checked in at the lab every six months to a year for a blood test. Until September of 2005 every thing was normal and I went on with my life. Last year the numbers came up wrong, and I started this blog. So that's how we got here.

A friend of my kids' had to do an interview project for school. She knew I was getting treated and what for; her family put me in touch with a guy who went through the treatment five years ago (I've mentioned "Bob" here before). One of her interview questions was what teens should know about this disease. My answer was that teens need to know that they can get this stuff too. I felt very middle-aged hearing myself give that answer.

Eight jabs to go

I have two unopened boxes with four syringes each sitting in the fridge. I took my shot late Friday night. Seems like the side effects have really hit me this week. I had to get on a three-hour conference call on Saturday from 10:30 to 1:30 — that project is running headlong into reality. A bunch of contractual deadlines created at the Nineteenth Hole with no particular connection to what needs to happen. But I digress.

I typically sleep late on Saturday after the interferon shot and this Saturday was no exception. I got up with time to grab something to eat drink my coffee and get on the phone. Due to the craziness in the project The Boss scheduled a three-hour call. He didn't join, of course. By the time the call was over, I was starting to feel sides. That afternoon I cleaned the pool and did some other light chores, but wasn't feeling my best.

We had dinner plans with friends, our kids, and their kids. It was good. I still didn't feel so hot, but it got me out and distracted. A distraction is good. Sometimes the worst thing you can do with side effects is to sit around wallowing in it. We decided to rent a movie and went over to their house. It was The Ringer which was all about a guy who decides to fix the Special Olympics. Our kids are old enough to appreciate the cynical humor.

How to inject Pegasys

This is an expanded version of a comment I posted in another blog. It might be useful for someone starting treatment. I've made some minor updates, if anyone is keeping track. Thanks to everyone at Ron Metcalfe's Hepatitis C Forum.

November 20, 2006 update. I've added a recommendation for the injection process itself. Quick and smooth is better than slow.

I use the Roche Pegasys syringe. These are the directions they fail to give you.

Roche Pegasys Syringe

(Picture raided from a post on ronmetcalfe.com by Ginjura)

Assembling the syringe

The syringe doesn't come with the needle installed. The needle is in a separate bubble pack. It's in two layers of plastic. Peel apart the needle package and remove the needle.

I prefer to loosen the plastic cap before installing the needle. I remove it and then put it back on loosely. You'll be able to see where the little semi-transparent needle cap meets the needle assembly. The orange post-use safety cap attaches to the base of the needle.

Hold the the needle assembly tightly down at the base where the orange cap connects and give the clear cap a straight tug. You don't want to twist it off, just pull it straight. Don't try to just loosen it — it doesn't work that way. Pull it straight off in one motion and get your hand away from the needle. I say this because I once tried just loosening it. When it came free, the natural reaction was to try to stop my hands from separating. I ended up pushing the cap back on. I could have just as easily stuck my hand with the needle. Not that that'd be an earth-shattering event, but it would be shattering to me in my shaky emotional state which is exacerbated by my dislike of needles.

Replace the semi-transparent cap loosely. Remove the grey cap from the syringe. You'll see that the glass of the syringe is frosted down at the tip where the needle goes on. That's supposedly to allow a tight friction fit.

Again holding the needle by the base where the orange cap connects, push the needle assembly tightly onto the end of the syringe, being careful not to press the clear cap back onto the needle. Don't worry about the syringe being made of glass. It is not fragile, at least not to straight pressure. I've never experimented to see what it would take to break a syringe, but I've never done it by accident either.

Don't try to twist the needle on. — you won't be able to anyway, as the attachment for the orange cap will just turn around the needle. The needle assembly will not click into place, it's just a friction fit. Push it tightly. I had one come loose as I was injecting and it was disconcerting, to say the least.

Preparing to inject

I usually use a bit of my rather meager love handles for the injection. Sites range from as far back as I can reach on either side to about an inch and change away from my navel. I've also injected above the navel and in the outsides of my thighs or high on my hips. Injections usually leave a silver dollar sized welt. Some folks report itching. I've never experienced it. Use them as markers of previous shots. Don't inject where there's already a welt.

Once I select a site, I scrub it down with an alcohol swab. If you have skin issues, you may skip this step. I haven't had any problem. The reason I scrub isn't because I'm obsessive, but to de-sensitize the area.

While the alcohol dries, push some of the air out of the syringe. This does two things. First, you don't want to inject a bunch of air (although some won't hurt, and can actually help, as we'll see). Second, the plunger has been stuck in one position for some time. Moving it prior to injecting makes it easier to inject.

Injecting

Next, grab a pinch of skin and inject. The Roche instructions recommend jabbing quickly. They're right! For the first forty or sow weeks, I couldn't bring myself to do it quickly. But a recent trip to get a flu shot convinced me other wise. The needle was the better part of three inches (7 centimeters) and it went somewhere near the bone deep in my deltoid. The guy who gave the shot pushed it in with a single smooth motion. I hardly felt anything. I now try to emulate his technique. Don't rush, just straight, smooth, and without hesitation (yeh, that's the hard part!).

I've found that the best feature of the Pegasys kit is that the needle is unspeakably sharp. It slides right in. I've found it is easier to focus on the syringe rather than the needle. At one point when I was more squeamish, I'd block the view of the needle actually entering with a finger.

I've learned that if you're going in an any angle at all, make sure that the bevel is up, away from the skin. In other words, the longer side of the bevel to the skin, the short side away. It takes advantage of the sharpness of the needle (Again, thanks to the Ron Metcalfe forum).

Choose an angle that keeps the needle down and the plunger end up. You want a small air bubble against the plunger. The idea is to empty the syringe of the drug. There's some controversy here. Some say that the syringe is slightly overfilled and that by fully empying it, I am getting a larger dose. It can't be more than a drop, so I don't sweat it. If I were really curious, I suppose I could measure it into a graduated cylinder, but I'm honestly not that worried. Anyway, there's an advantage of injecting a bit of air at the last. It prevents the medicine from leaking back out.

The instructions say that once the needle has been inserted to pull back on the syringe. Skip this step — it's lawyer repellant. It's unlikely you'll hit a vein in the belly or outsides of the thighs.

Push the plunger. Some say slowly, some say quickly or smoothly. I've found it makes no real difference. Just get the juice in your body and get on with killing the bug!

Pull the needle out. Again, do it quickly. Hesitation hurts. You'll probably find yourself letting a held breath out. I do anyway, and my heart is usually racing. This after forty weeks of injecting this stuff once a week, and close to thirty weeks of one interferon, plus a Procrit and three Neupogen injections each week.

Post injection

I usually swab the site again with the alcohol pad. Again, some folks report a bit of leakage and itchiness where the medicine gets on the skin. I haven't experienced this, possibley because I always wipe down afterwards.

Click the post-use cap in place and drop the syringe into the sharps container.

Cross this week's injection off. You've got another one down!

Will you ever get used to it? Maybe. Will you ever learn to like it? I hope not. Does it ever get easy? It depends on how you define "easy." It does get to be routine. I have a diabetic friend who does not feel sorry for me. He takes anywhere from three to five insulin injectons a day. Heppers get little sympathy from him.

Countdown Enters Single Digits

Last night I took 38 of 48. I now have 9 to go. I'm exhausted. The week has been rough, but better since Friday when the Procrit started kicking in. I take another one on Sunday. I've never looked forward to a shot before. Well, I'll take it back. I also looked forward to my first one back in May.

The house is chaos. My in-laws are here for Eldest Daughter's 18th birthday. Mother, step-dad (they've been married about 30 years), Head Wife's sister and her step-daughter. I get along okay with them for the most part. There are moments though. Last night SIL was all bent out of shape because Eldest had been working and then failed to spend enough time with Auntie to suit her. Eldest was wiped and taking it personally — she was in tears. I finally had enough and stepped in. Enough. Eldest is exhausted and you're doing nothing to help. I'm not going to have somebody come under my roof and push my kids around. So there. It settled things down. SIL is kind of cool toward me today. I honestly don't care.

We did have a nice evening. Went to an Italian restaurant that serves portions that are far too large. Having spent time in Italy, I can say that I've been to maybe three restaurants in this country that offered even an approximation of Italian food. This was not one of them, although it was a fair meal.

Anyway, we had the family, the inlaws, friends from church who sponsor the youth group at church, friends of Eldest, including a young man who dreams of a baseball career. That's his dream, but he's smart enough to have a plan B. He gets good grades and has alternative career plans.
I'm not sure how interested Eldest is for real, but he's got it bad.

As you might expect, the car was a huge hit. Head Wife had bought her a purse that she liked and had put a few useful things in it — lip gloss, Tic-Tacs, car keys, Kleenex. She was pretty shocked. I'd been extra grumpy and kind of naggy this week. She had no clue that was on the way.

There's a frightening drama unfolding in Ron Metcalfe's Hepatitis C forum. A woman in the forum has been talking for the past couple of days about her husband who appears to be in the midst of a psychological breakdown. He's having murderous and suicidal ideation. I'm terrified for them both. He needs a ride in an ambulance to someplace where he can be monitored and treated. I saw the post and was the first response. She has been frightened but hadn't called outside help in last I saw. I have a new respect for the drugs used in this treatment.

It's late. I'm fading fast; should have been in bed an hour ago.

Saw the doc yesterday

Good news: ALT = 29, AST = 24

Not so good news: WBC = 2000

Even less good news: HBC = 8.7

I know why the WBC is on the low side. I've been sloppy. I've only been getting two shots of Neupogen per week rather than the prescribed three. The hemoglobin at 8.7 explains a lot — like why I'm walking around in a fog. In the appointment Doc said we might raise the Procrit dosage. I called him today and asked whether we couldn't go ahead and raise it. He agreed and I'm now to take it every four days. Hopefully that will bring the hemoglobin back up.

Had a traumatic experience today. We bought our daughter a car for her 18th birthday. It's a 2000 Sentra, but has low miles — only 57,000. We didn't steal it, but didn't get robbed either. I think it was a good deal. It's now parked in a neighbor's back yard. We'll surprise her with it on her birthday.

Ruminating

A father's life is one of quiet dread

—Henry David Thoreau

I'm waiting up for Son. He went to a Sweet Sixteen party for a little blonde thing whose daddy has way too much money. I can't go to bed while any of the kids are out. It's this thing I have. Not only do I worry, I like to see what kind of shape my kids are in when they come in. Look them in the eye. Chat. Smell their clothes. I'm led to that behavior by the condition I recall being in when arriving home as a fifteen to eighteen-year-old. So far I've either been totally snowed, or my kids are just goody-two-shoes. Not that I'm complaining!

I talked with my mother for an hour or so this afternoon. I'd been overdue to call her (of course the phone works both ways, but I'm leaving that alone). She's essentially consumed with taking care of my youngest sister. Sister is 43 and has been drinking hard since about her sophomore year in high school. She's about 4' 10" (147 cm) and in high school might have weighed 90 pounds (40 kg). Her claim to fame was that she could drink football linemen under the table. No one could keep up with her. Since her head remained relatively clear, she was obviously immune from the effects of drinking. She has been confronted with a different reality. She has cirrhosis and I'm guessing won't live five years without a liver transplant. Hint: It's hard for an alcoholic to get a liver.

Son just arrived — her parents brought him home. He was sober, not stoned (back in the day one would say "straight," but these days that leads down a path where I'd just as soon not stray), and wearing the clothes he had on when he left. So I guess he's doing alright.

Head Wife and I went out car shopping this evening. Firstborn Daughter turns eighteen this week. I'm trying to wrap my mind around getting a car for this bald baby with the huge brown eyes. It used to take us forever to get a seat in a restaurant because all the grandparents (lots of those in Phoenix) wanted to see the baby.

Once again, we're either totally snowed, or things are going pretty well. Her grades aren't the best, but she's frankly not a student. She has a job where she works with children, she sings in the choir at church, and once a week she goes to visit a family of refugee children from Sudan. I'll take it.

Week Minus 10 — Stalling

I will have ten more to go when I take injection 38 tonight. But I'm stalling. I'm finding my attitude is not so chin-up, what-ho, pip-pip. I've been hanging out in a UK-based forum. The Brits don't really talk like that — well maybe they do, but they don't write like that.

My parents have had an ancient (I mean WWI vintage) record player for as long as I can remember. They dragged that thing all around the country, in fact. Anyway, one of the records is a marching song from the Great War that seems to be coming to mind more often these days:

Oh, they put me in the Army
   and they handed me a pack,
They took away my nice new clothes
   and dressed me up in khak',
They marched me twenty miles a day
   to fit me for the War,
I didn't mind the first nineteen
   but the last one made me sore!

Ch it's not the pack that you carry
   on your back
Nor the Springfield on your shoulder,
Nor the five-inch crust of khaki
   colored dust,
That makes you feel your limbs are
   growing older
And it's not the hike on the hard
   turn-pike
That wipes away your smile,
Nor the socks of sister's that raise
   the blooming blisters
It's the last long mile.

Thanks to http://www.immortalia.com for the lyrics. They have a WWII-era version that is almost word-for-word.

I mentioned it sometime back: this is the time to be careful — to be on guard for sloppiness. So I'm stalling from taking a shot. And I've taken my pills late. Yep, I'm getting sloppy. It's late. Self-discipline. To work. To work.

Ah, shaddup!

Week Minus Eleven

This is no longer Week 37. I'm now counting backwards. Ten weeks and five days, to be more precise. As I've received the boxes of Interferon I have marked them with the shot numbers. I opened the box marked 37-40 on Friday. It's winding down!

The last couple of weeks the sides have been hitting pretty hard. My hemoglobin count is low and slowly trending downward -- 9.5 month before last, 9.4 this past month. I'm thankful for the fact that I have access to Procrit. I don't think I'd have made it this far through treatment otherwise.

Work has been tough. I've billed between fifty and sixty hours the past couple of weeks. The solution that was sold was not workable. Although some of us raised that flag, no one acknowledged it until the reality was undeniable. I was asked to go to an on-site client meeting. I begged off. I certainly didn't want to be in person trying to make complex decisions after traveling and while fighting the usual Monday brain fog. I dialed into the teleconference. Fortunately, I have the backing of my management.

It's been a strange couple week in terms of rare or odd natural phenomena. I was walking the dog last Sunday night when I saw this fireball.[posted updated to provide a good link]. It was bright despite city lights and high clouds. Others reported that it changed colors. I couldn't see that, but what struck me was that it seemed to slow as it descended. I never saw it burn out -- it went below the level of the trees and houses. I've seen lots of meteors, but this was the brightest and longest I've ever seen. I later learned that it was going away from me, which would account for the slowing.

Then on Friday morning we had a little morning rain with some pretty heavy lightning. I was in that pleasant morning state about 90% asleep vaguely aware of the radio and the thunder outside. My morning doze came to an abrupt halt when it sounded like a grenade had gone off outside my window.

I've heard grenades. I know what they sound like. This sounded exactly like a grenade or something larger. Lightning had struck a tree in the back yard of neighbor just behind and diagonal from my house. The tree was completely destroyed. The neighbor who owned the tree had a section of trunk stuck through a second storey wall. It came through the wall a few inches from their baby's cradle. The neighbor behind me had another five foot section break through a sliding glass door. I had a five foot section of the eight-inch tree trunk in my pool. In the front there were substantial pieces of wood -- a couple of feet or better -- two hundred feet away from the strike. Thankfully, no one was hurt. The only damage at my house was some electrical strangeness. My load controller is apparently fried and one port on my network switch is dead. The load controller is covered by an appliance service contract and the switch is worth about $20. No worries here.

I spoke with a neighbor who was turned away from a blood collection center due to Hep C antibodies. He followed up with his doctor and the virus was undetectable. I told him he needs to buy a lottery ticket. Patients clear the virus on their own in only about fifteen percent of cases.

It's interesting seeing the variety of responses and reactions among the little sample I know personally. There's Bob, Type 2 who cleared it on a 48-week program some five years ago. There's Larry, who relapsed but was apparently not treated aggressively enough. Joe cleared the virus himself. And Ken, Type 1, who relapsed six months after completing treatment.

What that tells me is that nothing is typical about this disease. The only guarantee is the lack of guarantees. As I approach the end of treatment, I have to keep a hard fact in mind: This can come back. But I'm glad to have fought. At least I've pushed the bug back.

Be well.

Watching the miles tick over

As of this past Friday the countdown is Thirteen Weeks. I found that my prescription plan charges me on a per-prescription basis -- it doesn't matter whether it's a 30-day supply or 90 days. Wish I'd known that earlier. In any case, I received the last three boxes. The unopened boxes are numbered 37-40, 41-44, and 45-48. There is one syringe left in the open box. The end of this business is in sight. On the road to the town where I grew up, there was once a sign that said it was nine miles away. I remember passing that sign and it seemed that the last nine miles was half the trip.

My job has gone nuts. I clocked 50 hours last week and the week before. Between making up for the absence, looming deadlines, and the disturbing realization that the product that was sold is not deliverable without huge changes, the project is getting exciting. Exciting projects are like exciting plane rides. Boredom is much better. I've let the overall project manager know that I'd rather not travel unless there is something very specific to be done that only I can do and only in the faraway city which would justify burning two days worth of travel. In other words, I don't want to travel. At this point, there's little reason for me to climb onto a plane.

I've gone back to the Friday night Interferon schedule. I thought about taking the shot earlier in the day, but couldn't bring myself to mess up a perfectly decent Friday afternoon. This Saturday and last I was able to accomplish a bit -- worked on the car, put up some shelves in Son's room, even a bit of electrical work installing a new outlet (the shelves cover up the old one). But today and last Sunday both I've been moving pretty slow. I had my suspicions, and I found out why on my trip to the doc last Thursday. My hemoglobin count is down again -- around 9.1. I knew it would be low. I can feel it. But, as the doc points out, I'm tolerating the anemia and I'm in the home stretch. No talk of dose reduction.

My friend Bob who went through treatment some five years ago asked me to call another friend of his. Larry finished treatment last year and relapsed. I had mentioned the possibility that statins (anti-cholesterol drugs) might be an alternative. But that's still on the horizon. It turns out he was taking only 1000 miligrams (I'm taking 1200 mg) of ribavirin. When he started breaking out with a skin rash, his doctor reduced the dosage even further. He got himself into Mayo and the liver specialist there said he'd have had him on 1200 mg. daily, and he'd have sent him to a dermatologist for the skin rash. The sides we treat symptomatically; the object is to stay on treatment.

Naturally Larry is weighing options. Treat again? He's over 55. The Mayo doc says he has a 30% chance of developing cirrhosis in 20 years. He has moderate liver damage, this after, in his words, "drowning" his liver in beer for years. He's a construction worker and, again in his words, "That's what construction workers do." He's now a non-drinker. Can his immune system hold the infection off? Or as he gets older will the virus start to move faster?

I had to interrupt our conversation to take a work call, but I'm going to check in with him again. One thing that I'm concerned about is that you can't always count on a disease to give you a nice long linear slide. I remember when my father fought colon cancer he was in decent shape and suddenly took a bad turn. He was dead in a couple of weeks.

I recall when 55 seemed like a terribly advanced age. Now it's only a few years down the road. This mortality thing is really annoying.

Energy and persistence conquer all things.
— Benjamin Franklin

Back Home -- Chaos, Sweet Chaos

But first, the countdown. I've done two Interferon shots -- Number Thirty-two last Saturday; I stalled Friday night and ended up doing it Saturday morning. And I just opened Box Number Nine and took Shot Number Thirty-three. Fifteen to go. Fifteen.

I got an early flight out of Denver last Friday. Well worth the extra $25. The trip to the airport was far easier than Monday's trip away from it.

The weekend was a blur. All three kids went to a church-sponsored lock-in at a place with about everything a kid could want to do -- rock climbing, go-karts, video games, etc. etc. ad nauseum. Yes, nauseum. They had a "teacup" ride to make themselves sick, which several did. Gosh, I was so sorry that I couldn't chaperone, but you see, I'm on this medication....

Spouse and I made good use of the quiet house. But I had to get up early the next day to deliver a rented van to the church. The kids were pretty wiped which was well. We all did some serious napping on Sunday.

This work week has been nuts. It's a combination of being out of pocket for the previous week and the project plan getting dangerously close to reality. Dangerously because, in the words of the great German strategist von Moltke the Elder, "No battle plan survives contact with the enemy." But in this case, the enemy is baked into the plan. As this plan encounters reality, it starts coming apart at the seams, much as I had predicted when I came to the project. The gap between what we do and what we learned in the class last week.

Despite the gathering air of panic, I bailed out of work early yesterday afternoon to ride with a couple of other dads to the big football game. It's a 3+ hour drive. Our guys won. Son was playing defense as an outside linebacker and picked up a fumble. He tiptoed fifteen yards down the sideline before getting pushed out of bounds (followed by a late hit after the whistle, but that went unnoticed by the officials -- that's football). We finally got home at 1:30 AM. I skipped my usual sleep aid (Elavil, aka amitriptyline) and slept just fine. Up this morning at a little before 7:00 and on wall-to-wall conference calls that actually required participation. Now I'm waiting up for kids. It's 11:20 PM. I think I'll wait up on the couch.

To all who are fighting this and more difficult challenges:

Go for the swine with a blithe heart.
William Churchill

Sitting In A Hotel In The Denver Area

The trip up here was interesting. I much prefer that my trips be boring. I want the excitement to be once I arrive. The Blue Van showed up at 6:00. I got up at 5:15. As I've mentioned, that's far from standard behavior for me. My flight was at 9:00 which left plenty of time to clear security.

I had decided to throw my heat-sensitive meds (two Neupogen syringes, plus a vial of Procrit and a syringe) into my checked baggage. The gel pack to keep them cold probably wouldn't have made it through security. Besides, I really didn't feel like explaining my medical issues to TSA. I was glad not to be in a rush when I set off the metal detector twice. Two strikes and you're out with TSA. I get pulled out and wanded. I was wearing "carpenter" shorts with a side pocket where I carry a cell phone. I completely forgot that. And I had stuck a pack of gum in my hip pocket. It was a plastic blister pack over a sheet of foil, so naturally that kicked the thing off. At one time I travelled twice a month in my job and could breeze through security. But that was before September 11, 2001. I finally get through Security and head to the gate. Plenty of time -- grab a coffee and a muffin, plenty of time.

The flight itself was boring -- as airline flights should be. It was when I got on the ground that things started to get more interesting. The last time I flew into Denver was more than ten years ago. I flew into Stapleton airport, which was in northeast Denver. The new Denver International Airport is located some fifty miles south and east of Denver. Everyone I know from Denver will quickly point out that Federico Peña, former Denver Mayor and later Transportation Secretary under Clinton, just happened to own much of the land that the airport now occupies. I'm sure there was no taint of corruption. He was, after all, a Public Official.

Anyway, the airport being so far from Denver proper, and especially so for me since I was going to the far northeast of the Denver metro area, I had to make a drive. No worries, I have a map and directions from maps.google.com. Let me give you a hint about maps and directions. It helps to read them before setting off on a drive in a strange rental car in a strange city. It took me three hours to get to where I was going (plus an hour for lunch). Next time I come up here, I'm flying the night before. I finally caught up with my team at a local brew pub. Sadly, I couldn't touch any of their very tasty-looking wares. Hopefully I'll have an opportunity next year. No beer for Chris until I have offically achieved SVR. Shed a tear and hoist a glass of club soda.

The class that formed the pretext for this gathering started on Tuesday. It's pretty challenging. The brain fog is not helping, although that seems better since Tuesday. Things were tough then as well. I didn't do myself any favors when I awoke suddenly. I had not heard the alarm clock. I reached over and dragged it to where I could see it. I wear a nasty optical prescription -- I can literally light cigarettes with my glasses, which were not on the bedside table. So I had to look pretty close at the clock. It said 6:45. I had set it to go off at 6:30. I jumped up, started the coffeepot, and climbed into the shower. When I got out and with my glasses on my head, I turned on the TV. It was just coming up on 5:00 AM. I had changed the hour when I reached across the bed. Needless to say, the afternoon was pretty rough. I spent much of the last two hours of the class standing at the back and furiously taking notes -- an old Army trick.

Speaking of the Army, Here's a closing note:

You must be single minded. Drive for the one thing on which you have decided.
General George Smith Patton

Countdown -- Shot Thirty-one: Seventeen to go!

I took Shot 31 on Friday morning rather than the evening as I usually do. I have to travel on business this week and wanted to minimize the residual side effects I typically feel on Monday. I didn't notice much in the way of side effects after I took the shot other than a mild headache. I got to bed by 11:00 (early for me, I have a bad habit of staying up too late). I knew it was going to be a rough morning when I had to get up and take Son to football practice at 5:30 AM. My head was ringing. I got up, made sure he was moving, and drank some juice while he got ready. No coffee, I wanted to get some more sleep. Got to get the bicycle fixed! I went back to bed and slept nearly four more hours hoping that the hangover would go away. It didn't. When I got up I was as headachy and dehydrated as I'd been at 5:30. Breakfast, ibuprofen, and many cups of coffee later I was beginning to feel human. Several chores, but nothing heavy. Nonetheless, when I finished them I felt like I'd done something.

As post-shot sides go, this week wasn't bad. I'm going to shift to Friday mornings on a regular basis. I don't recommend it for someone new to treatment, but once it all blurs together into one big blah, it might be a way to get a few more useful hours.

I've been having problems with congestion which is exacerbated by the dehydration. I've been hacking and coughing and hawking up horrible things. Older Daughter asked if I had a hairball the other day. Close to it. One of my net.friends suggested goat's milk as it has less lactose than cow's milk. I decided to pass on that. When travelling in Northern Arizona many years ago I had breakfast at a cafe on the Navajo Reservation. I ordered a glass of milk along with my pancakes. The milk tasted fine -- until I exhaled. Then this musky flavor that I can only describe as goatish followed. I drank it, but I haven't touched it since. Instead, I tried soy milk. There's a brand called "Silk" which I'd had before. It's not bad. What I'm noticing is that I have much less congestion. My singing daughters reaction: "Duh! Why do you think we can't have dairy before a concert?" I'd always thought it was just at tale told by control-freak choir directors.

Son update

He came home all jazzed last week. They've made him a starting running back. For those who don't follow American football, that's one of the guys who stands behind the line and either carries the ball or protects the quarterback if he's throwing. Either way, he's a target. His mother was especially thrilled to hear it. His arm is mending, but still weak. He's wearing a brace and taping it. That isn't helping his ball handling. He caught a pass last week and jammed a pinky finger. Might be broken. The treatment for a broken finger is exactly the same as a sprained finger. More tape. The universal cure. He's spending a few days of practice running.

The blue van is coming tomorrow at 6:00 AM. It's going to be a long week. A class and meetings. My work has been great about not pressing me to travel, this in a job that could easily be 50 percent travel. I reckon it's time to pay the piper. Besides, I need the class and, I need to meet these people I've been working with for more than a year.

One of my blogger-heroes Hep C Boy alway signs off with something inspirational. I'm not feeling inspired at the moment. Need to work on that.

Shot Number 30 Down!

Eighteen to go. This is feeling more and more like a countdown.

I got a call from Doc on Friday. He had the results of past week's blood test. I'm still in the same borderline low range I was in last week. His suggestion is to gut it out. If he thinks I can, I guess I better gut it out. I raised so much blasphemy over being off treatment I'd rather not reduce the dose. But I have to confess I'm mightily tempted to take two Ribas rather than three tonight.

I missed my Neupogen shot Thursday -- got busy with work. I was on back-to-back phone calls from 5:00 AM until 1:00 PM (The joys of living on Western time while working with folks on Eastern and UK time). It wasn't quite as bad as it sounds. About half of it I didn't have to be completely engaged, but some of it did get pretty intense. Since I was shifting shot times, I decided to put off the Interferon until Saturday night. I had a bunch of house chores stacked up -- a lawn irrigation system that was acting up, my son's room taken apart for a new bed and shelving, but only partially put back together.

The biggest obstacle was the shelves. We took a ride down to the other side of town -- 25 miles -- to the Ikea store. What a nightmare! It was like Disneyland. I hate being herded and Ikea on a Saturday afternoon is all about the herd experience. I felt like all my nerve endings were sitting on top of my skin.

A Miracle Healing

No time for sides today. My son woke up dreaming of somebody shooting him with a watergun. Turns out his ceiling fan had water dripping off of it. The girls' bathroom is above his room. Uh-oh. Check it. The floor was wet around the toilet. Good! The fresh water supply line was wet. At least we don't have a sewer leak! I turned off the water to the toilet and dried the floor. Get everyone up, go to church. Home from church and turned the water back on in the girls' bathroom. No leak. It got well! It's been healed! I still don't know whether someone spilled something or if there's an intermittent leak.

We'd been talking about replacing Son's ceiling fan and light, so he and I went over to the local Home Depot and found a fan. It's not bad installing a fan if there's already one properly installed. I swapped it out without much trouble, but then the thing wouldn't turn. Bad motor. Home Depot exchanged it. The new one is pretty noisy, but it's a $50 fan. We'll see if it doesn't quiet down.

The Roach

Finally, after all the fun, I'm settled down on the couch with the wife. Older daughter was in the kitchen and suddenly let out a shriek. She ran into the family room and dived into the middle of her daddy who is, of course, here to protect her.

A few weeks ago Younger Daughter's kitten brought a two-inch roach into the house -- a playmate for the lonely times of the day. I nearly caught it, but it proved too fast. The Roach made several subsequent appearances, always for the benefit of the females in the house. Since the light was always poor, I'd begun to question whether they were actually seeing a roach. But there was no mistaking this time. Like Brawny Man, I grabbed a paper towel and girded myself for battle. Sure enough, there it was beneath a low trivet on the counter. Mr. Roach wasn't quite so fast this time. I got him in the towel and gave him a good squish.

Now, my wife is nearly as phobic of six-legged varmints as her daughter. But she wanted to identify the body. I opened the towel so she could see. You've seen the horror movie where the bad guy just won't stay dead? You got it -- Mr. Roach jumped out of the towel, leaving some of his guts behind. Fortunately, he didn't get far, else I'd still be roach hunting.

To bed. Seven o'clock call, plus I'm liable to be feeling the usual Sunday sides tomorrow.

Anemic Again!

Saw the doc on Friday. My HBC is 9.5, right at the borderline of when he took me off treatment back in May. This despite a weekly Procrit injection. I'm going in for another blood work-up this week. Based on how I'm feeling, I suspect it's lower. I now attribute the insomnia to anemia. And the cough. And the congestion. And the constant headache. It's a package deal. Once again, having a number and a name to hang on the way I feel causes me to feel even worse. Or at least like I shouldn't fight it.

On the bright side, the WBC, platelets, and liver panels are all in the normal range. I haven't had a viral load test since starting treatment. The doc has mentioned it, but he doesn't seem in a rush -- something I've both liked and disliked about this doctor. He told me he didn't like to give a 12 week check because some insurance companies refuse to pay for treatment if there has not been a log-2 drop in the virus. And he says that if I'm not undetectable at 24 weeks, I'm off treatment. Well, we're past that. I meant to ask him about it a viral load test at this last visit, but spaced it out. Honestly, I'm not that worried about it right now. He tells me that the consistently good liver enzyme numbers are a good indication. And he operates on the theory that more treatment is better than less, even if someone turns out to be a non-responder or relapser. The more we can slap the virus around, the better.

I took Shot Twenty-Nine yesterday. Nineteen to go. I usually do it on Friday night, but lately seem to be delaying to Saturday during the day. I no longer notice immediate side-effects and I don't like doing the injection at bedtime. Poking myself with a needle is just not the way I like to prepare my mind for sleep.

I saw a recent picture of myself and I was shocked. I've aged ten years. My hair is thinning and my skin is pale and saggy. I have deep-set eyes anyway, but I now stare out of thse hollow sockets. According to everyone who's been through this, the effects go away. People are going to think I've discovered a fountain of youth.

more insomnia...

But first the countdown... I took injection number 28 last Friday. Twenty to go. It is now indeed a countdown. I'm tired, but can't sleep, foggy, grumpy, can't stick with a task for more than 20 minutes at a time. But I'm counting down. Tomorrow night it will be nineteen to go. I spell out the countdown numers. It feels good. I'm being weird...

The past couple of weeks I've had a tough time sleeping. The pattern is I go to bed at a reasonable hour and end up tossing and turning. Fortunately, my wife has been put on a nightly med that knocks her out, else I'd be hearing about it. When I finally get to sleep, I waken myself with my thrashing. From there it's weird. One night I bedded down on the couch. Another night I slept for three hours on the floor. The next day I'm so tired that I drag all day. If I sleep more than an hour, I won't go to sleep at night.

I did skip my Elavil one night because I failed to renew the scrip (see previous post. Got it the next day, but I wonder if I haven't developed some resistance. I'm only taking 10 mg. It may be time to boost the dose. I'll see the doc tomorrow.

I've been having a lot of congestion in my upper chest -- it's a constant "harumph" and a lot of thick junk. If you're reading this, you must be into this sort of thing. See the first paragraph of the first post of this blog. I'm taking Robitussin expectorant (guaifenesin) to try to thin it out. I'm also having a nasty cough now and then. Yesterday I felt my chest going into bronchial spasms. I recognize it from having a case of bronchitis years ago. That spasm feels like something in your throat but it's not. It's the bronchial tubes going into spasms. It's happened once before since I started this mess. Luckily, we had an Albuterol inhaler left over from an allergy problem my daughter had last year. It was still in date, but I confess I didn't look at the time. One hit set me right.

Home life is busy but seems to swirl past me. My wife is having a tough time at work which seems to have set her off balance. Over the past few months she's started having crying jags. She knew something was wrong and went to the doc who gave her some anti-depressants (and a follow-up appointment). We'd talked about that before. She's not entirely comfortable taking them, but it seems to be doing her some good. She has settled down and says she's more relaxed, but foggy.

The doc doesn't see this as being a long-term issue, it's just a reaction to her situation that seems to have gone over the top. As the doc said, "Step back and look at yourself from another person's viewpoint." With everything that's happened over the past couple of years -- a death and a couple of illnesses in the family, a persistent squabble between two members of her family that doesn't involve her directly, but certainly affects her, my illness and treatment, etc. etc. etc. It adds up.

Meanwhile, the kids are getting ready for school, Son's arm is out of the cast and football practice has started, Daughter 1 and 2 are all off in their things. Daughter 1 in particular had a shock this past week. A friend of hers from school died hiking in the mountains with his brother. I try to be there for her in my clumsy way. It's tough. Both of the older two knew the kid. I'm encouraging them to go to the memorial service -- kids will tend to skip such things if they can. But they need to show support for the family. Way too much reality, that. Sort of puts my little ailment in perspective. My kids are here, healthy, and even speak with me now and then.

Meanwhile, my wife and I bury ourselves in 24. We got hooked on the series last year and have been renting the DVDs. The previous season is the most implausible, convoluted, ridiculous, video game, comic book of a television show I have ever seen in my life. In other words, it's fun. I never knew that L.A. was the center of so much terrorist activity. Oh, and if you're ever following a terrorist and he stops for gas, but you need to delay him while your techie buddy positions a satellite to cover him through the canyons, the best method is to hold up the gas station. If it's good enough for Jack Bauer, it's good enough for me.

I heard they're making a movie version of 24. It will be real time like the TV show, but in order to make it short enough for a movie, they'll just have everybody do what Jack Bauer tells them to. It will be called 2.

Nearly midnight. I think I've bleated here for long enough.

Insomnia

It's after 1:00 AM and I'm here blogging. My own fault. I let my Amitriptyline prescription run out. I didn't know how much it was helping! I thought I might have trouble sleeping and so had taken a couple of Benadryl tabs. The stuff usually knocks me out cold. It isn't touching me tonight. I can't leave my legs still and I'm constantly tossing and turning. Picking up the new scrip tomorrow.

The past couple of weeks have been pretty good. We were rid of the older kids -- they were off on a church trip -- and the youngest had friends to stay with, so we snuck up to Flagstaff for the weekend. It got us out of the heat. The oldest wants to go to school there at NAU. She was up there a few weeks ago. There are worse places.

The past few days I've been getting lots of sides. I'm tired, grumpy, listless, etc. And the little sores have reappeared at the corrners of my mouth. I also suspect I'm a little anemic. I'm getting the sound of blood rushing in my ears, and my heart is running around 90 at rest. I'm still taking Procrit and Neupogen, which boost red and white blood counts respectively. I really hope I don't have to up the dosage. I hate sticking myself.

Past 1:30. Maybe I can sleep now.

Shot 26, Week 28

I'm just past the halfway point. I've got a picture of being on a long drive through desolate country; I'm thinking I-40 east of Flagstaff and into New Mexico, or maybe east out of Albuquerque into the Texas Panhandle. The novelty of being on the highway is past, the scenery never seems to change, and you just can't get there fast enough. This is the time to suck it up and do what needs doing, but also to pay attention because it's a time that mistakes creep in. In my case, that means missing meds, not paying attention to changes or new symptoms, or letting relationships dry up.

Speaking of which, my wife is going through a rough patch emotionally. She wonders if she isn't depressed. There's a lot of change and uncertainty in her job and in life. She frankly doesn't deal well with uncertainty at all. She's kind of a control freak and gets uncomfortable when she can't affect an outcome. There's been a lot of other stuff going on as well, and we can't control any of it. Despite all that there's reason to be thankful -- we're all reasonably healthy and whole -- but the past couple of years have been a bumpy ride and I think it's taking its toll on her.

I'm trying to be more supportive. She pointed out a few days ago that I seem to be able to "put on a show" for other people in a social situation, but when it's just us I seem to collapse. This afternoon she really opened up on the possibility of depression. For the past few weeks she's constantly near tears and seems to be getting no joy from life. I think it helped her just to talk. And I think she'll be doing better just for deciding to do something. She'll be calling the doc this week. Something is definitely off-kilter.

We're going to Flagstaff next weekend -- we just need to get out of the desert heat. Temps have hit 118°F/48°C recently which certainly isn't doing anything for her mood.

The road goes on forever.

Week 26, Shot 24

Wow! I haven't been here in a while. It's been a busy three weeks, but nothing much appropriate for this. Just life. Kids back from camp, extra kids (my nieces) here for an extra week, son to the bone doc a couple of times (he's doing fine -- in a cast to just below the elbow). That followed by a short interlude of comparative normalcy, then a Fourth of July weekend run to California. It's a six-hour drive to the LA area where my in-laws live. I drove there and back. I didn't do a lot in between. We had the usual celebrations and fireworks.

Back home, I'm wiped. I took the rest of the week off and I'm finding I need the rest. Yet I went to bed late last night because I didn't feel like I could get to sleep. I awoke this morning about as tired as when I went to bed.

Today I ran some errands and did some maintenance work at a rental property I manage. By the time I got back I was pretty wiped, yet couldn't sleep when I crashed on the couch. Oh well. This is how I feel. Not bad, just tired and kind of grumpy.

This evening we went over to some church friends' house. Bratwurst on the grill, too much ice cream, the usual. Nice evening. My wife says I can put on a good show. But toward the end of the evening I must have been looking woozy because my host asked if I was okay. Just wrung out.

Now I have to go take shot 24. This is the halfway point. Nothing to do but keep going.

I'm stalling. To bed, but first the shot.

Interferon Shot 20, Week 22

First, Son's status report. We got into the doc on Monday afternoon. He declared it a Salter Type 2 fracture. There is some growth plate involvement, but chances of a full recovery without complications are excellent. They brought him in the following day to have it reduced further; the emergency room doc had been able to get it close to the right spot, but stressed that it needed further attention. Son now has a splint -- two plaster half-shells wrapped in an Ace bandage. He'll get a regular cast next week. I'm tempted to pay the extra expense for a waterproof cast with a Goretex lining. He'll still be working out for football and the sweat will be pretty intense. It'll be worth that to save the smell, not to mention the whining/whinging (I love the UK version of that word!).

So, son was able make it to church camp, which assuaged some of the bitterness for him. somebody else was going up late and he got a ride. They all got back today tired, sunburned, and apalled at the heat. A week at 7,000 feet/2,133 meters altitude will do that. He and Young Friend from the ER trip are now settled in front of a movie.

I took the last out-of-sequence IFN shot this morning. Next week, I'll be back on my Interferon Friday schedule. I'm now taking five shots per week:

• Tuesday: Neupogen


• Wednesday: Procrit


• Thursday: Neupogen


• Friday: Interferon


• Saturday: Neupogen

With near-daily shots, I'm having to keep track of where I've poked recently. This is a hassle, but I feel so much better! The only real side effect I'm feeling is a bit of fatigue, the funny taste, and some achiness.

My wife's car had a problem today -- the alternator went out. We have extra kids here and we really need that car. I did it myself to just get it done, and to save the couple hundred bucks that taking it to the mechanic would cost. It took about an hour and everything went smoothly. I guess I'm not suffering too many sides. Last month I wouldn't have even attempted it. I doubt I'd have had enough strength to loosen the bolts!

Every Day A New Adventure!

My wife and older daughter went to California for a niece's high school graduation party. That left me at home with my son (14) and daughter (12). I had everything lined out. Son was going to a football day camp Friday evening, Daughter went to her friend's house to spend the night, and I went over to friends' house for a boys' night where we planned to do manly stuff like eat brisket and watch war movies. I'd just settled down to my first sandwich and The Great Escape was all queued up when my cell phone rang. It's coach. My son broke his arm. He's on his way to the emergency room.

Friend's son is also good friends with my son and he wanted to go, so we headed out. It was an ER in a college town on a Friday night. Do the math. At least school isn't in session. It took us 25 minutes to drive across town. Son and the coach had arrived about 15 minutes before us. He was in a fair amount of pain. Looking at the X-ray, it's obvious why. This is the view before they set it.



We waited for an hour in the waiting room before they got us in to see a triage nurse. Then it was another hour in a back room waiting for the doc. They had to put him out in order to set the bone. That was another hour. Finally they started an IV and dripped some get-high drugs into him. He enjoyed it way too much. And he spilled his guts to me, which was interesting, and a fair relief -- no earth-shattering revelations. It led me to wonder why we have all the ruckus in Iraq over harsh questioning. Load 'em up with this stuff and have a pleasant chat.

It took another hour for him to come down from the drugs enough to walk out. He was feeling a bit woozy with a hangover, so they gave him a basin. By that time it was approaching midnight. We drove back to Friend's house and let Son walk around. They were still up, fortunately. The basin came in handy. Friend's wife is like a second mother to Son (as my wife is to Young Friend), so she kindly held the bucket when the hangover caught up with him.

Did I mention that I'm on hepatitis C treatment? By this time I'm getting tired. Home to bed. Pain meds for Son, ribavirin and Elavil for me. Tomorrow I'm on the phone trying to find a pediatric ortho. If I don't have an appointment lined up by noon, we're going to the ER of Phoenix Children's.

But tonight, I have to take a hit of interferon. Oh, by the way, I have to be on a call at 6:00 AM. Good night!

So Far So Good

Had an appointment with the Doc today. He had the results from my latest blood test. The blood boosters seem to be doing their thing. My RBC count is over 15 (low normal), WBC is at 18,000 (also on the low end of normal). I've seen no unpleasant side-effects from the Procrit. The itching I reported when I first started seems to have subsided. I do have some joint pain especially in my knees, plus inside the top of my pelvis and in my forearms. That's consistent with the Neupogen's side-effects. It's an annoyance, but no worse than soreness from a hard workout at the gym, just strangely located inside my bones, rather than in my muscles.

Meanwhile, the bug seems to be at bay. ALT and AST (liver enzymes) are both in the 25 - 27 range, well within the normal range. No abdominal swelling or discomfort.

Meanwhile, the side-effects from the meds are apparent, but comparatively mild. I'm getting those annoying little cracks on the corners of my mouth and my detractors scurrilously allege that I'm irritable. But my detractors allege that about me anyway. Really, I don't think I'm any more irritable than most folks when the temps are in the 106° F/41° C range. I've found it easy to vent most of my irritation while driving. I've given up yelling, I just enjoy the surge of adrenalin the clench of my jaw.

With that in mind, I present:

Rules of driving in Phoenix summers:

1. Assume the other driver is armed.
   Many of us are.... Which may explain why "Road Rage" incidents are relatively rare in Phoenx, or are at least short.
   


2. A car with the windows rolled down has the right of way
   It's obvious that the air conditioner is broken. See Rule 1 above.
   


3. It is permissible to wait for a red light under an overpass as long as said waiting occurs reasonably close to said red light.
   "Reasonably close" means within sight. Unless the waiting car has its windows rolled down, in which case the car may wait under any underpass for any red light. See Rule 2 above. And never forget Rule 1.
   


4. During the month of May northbound HOV (High-Occupancy Vehicle) lanes are reserved for motor homes and fifth-wheel trailers with Northern plates.
   Stay out of their way, they left late for reasons beyond their control and just want to get home before it gets above 105.
   



5. Premium Parking is any spot with shade within a half-mile of a business or establishment.
   Avoid arguments or confrontations over Premium Parking (see Rule 1).
   



6. After 2:00 PM, he spot immediately east of a Hummer is Premium Parking.
   The acres of sheet metal provide very tolerable shade from the afternoon sun.
   


7. It is forbidden to immmobilize a Hummer in order to obtain Extended Premium Parking.
   It is also unwise. See Rule 1 above.
   

Second Week Back In The Saddle

Took interferon Shot Number 19 today. The shot was uneventful. It's six days since my last -- I want to get back on a Friday nigh shot night schedule. Ifx and a cc of Neupogen for good measure. Thanks to the break and some apallingly expensive drugs, I'm also back on the full dose of ribavirin. I took my evening pills, along with my weird anti-depressant (Elavil) that is supposed to help me sleep. It seemed to work pretty well on the earlier go-round, but for the past few nights I've found myself awake between 0200 and 0300. I'm fidgety.

I was Being Encouraging in one of the forums about how glad I am to be back on treatment -- a guy with 4 weeks to go was getting really down.

"I'm back on treatment and have now learned to appreciate the headache, the heartburn, the weird sleeping patterns, the falling hair, the grumpy moods, all of it. It means that I'm fighting which beats hell out of waiting and seeing. That's how I feel now, the first week back, I wrote, Helpfully.

Obviously the meds hadn't fully kicked in yet.

"I'm sure I'll be as whiny as usual in a couple of weeks," adding my disclaimer like the fine print on a car add. I can tell it's on the way.

Best go to bed.

Back On A Full Dose

The doc called out of the blue this afternoon with the results of my Wednesday bloodwork. I didn't have anything to write on, but both RBC and WBC counts are in the low-normal range. I believe 12 and 1800, but I really don't recall. He also gave me my ALT and AST numbers which were both in the twenties, I believe, but again in a very normal range. I didn't ask, but will ask at my next appointment whether the good liver panel readings might be circumstantial evidence that the virus is at bay. They've been normal since I started treatment. That the ALT/AST numbers didn't jump during the break is encouraging. How encouraging, I can only wonder.

Bottom line -- I'm back on 6 Riba tabs a day, will take Shot 19 this Sunday, six days after my re-start shot this past Tuesday. By next week I should be back on the Friday night jab routine -- along with Monday, Wednesday, and Friday night jabs for Neupogen and a weekly Wednesday night Procrit thing. I feel like a damned pincushion. I'm having to survey injection sites. "Let's see, when did I last punch the left side of my spare tire..." Actually, I'm kind of scrawny. There's not much spare tire to punch.

Latest Bloodwork Results -- Back On Treatment!

Doc called this afternoon (following a call from me). My HGH count is above 10 and the WBC is, I believe 1500. He put me back on. I'm to start with a reduced Ribavirin dose, but the Interferon is the full load (consistent with what I've been reading about fixed dosing of Interferon vs. reduced dose -- the fixed dose party seems to be winning that argument).

We did have a conversation about my concerns. I said to him (in essence) that I trust his judgment and have been following instructions to the letter. But I also read and question. I work in a very fast-moving field and it's not unusual at all for developments to pass me by. I can certainly understand that this is also a very narrow and fast-moving field. He didn't say anything legible, but made agreeable noises. Certainly nothing that would look bad on a deposition. That's another downside of American medicine (outside of the issues of who gets insured and how, a topic I refuse to be drawn into) -- everybody's got a lawyer.

Honestly, I do trust this guy -- he comes too highly recommended to write off. And, to his credit, I notice that he took action consistent with what I'm reading in current literature. In other words, it appears that he's done some reading and possibly some outside consulting. Which is what I was looking for to begin with.

I asked about how the gap in treatment might affect me. He points out that I've been off for less than three weeks and pointed out the slow-moving nature of the bug. Over a 48 week course, it should make little difference. I hope he's right (but meanwhile, we're taking measures to keep me on treatment).

I'm back in full-force. The shot I took tonight replaces last Friday, and he wants me to do it again on Saturday or Sunday, then move back to my usual Friday routine. Meanwhile, I'm to continue the Procrit and Neupogen and get my blood monitored weekly. After next week, he said I would probably go to a full dose of Ribavirin.

I'm the definition of mixed emotions. I have come out of the cloud enough to realize how crummy I felt and I've been kicking and screaming to get back in. Damned whiny Interferon patients! No satisfying them!

I'll need to find a suitable quotation regarding mixed emotions, but it's too late to go trolling the Internet. In any case, back on track. I've already got the lead-like Interferon taste in my mouth. To bed before this stuff comes on stronger!

On Procrit and Neupogen, Still Off Treatment

The Procrit is a once-a-week shot, the Neupogen is three-per-week. I started them on Wednesday (May 24) and took the second Neupogen Saturday. This has all been a learning process. I had a notion that my blood levels would bounce back quickly after getting off tx and on the blood boosters. Wrong! It takes a while for the numbers to come back.

From the Procrit prescribing information:

Because of the length of time required for erythropoiesis – several days for erythroid progenitors to mature and be released into the circulation – a clinically significant increase in hematocrit is usually not observed in less than 2 weeks and may require up to 6 weeks in some patients.

The Neupogen insert was considerably less willing to set expectations about how long it could take to raise WBC counts. But I doubt it's an overnight effect.

Anyway, I'm still circling the airport.

I'm noticing some mild side-effects from the drugs. Fortunately, no dashing to the bathroom. I have some fatigure, mild achiness, and some mild to moderate itching, mostly on my scalp and back. If I were on treatment, I doubt I'd even notice it.

Meanwhile, I think I've succeeded in pissing off my estimable gastroenterologist. My GP contacted his office saying that I had questsion. The note that came back was that we've already talked and the treatment plan is set. Hmmm.

The thing is, I trust his judgment. His reputation is sterling. My question was whether he was operating on current information. I suspect that's been resolved -- he did prescribe the blood boosters. But the downside is that the damage is done and now I'm having to recover before starting up again. At no point have I seriously considered going back on treatment of my own accord. I've got too much personal experience with these drugs to treat them lightly. No way am I going to take them blindly without medical monitoring.

I have an appointment for a second opinion in mid-June. That's a week after my next scheduled appointment, and I do expect to get back on the treatment before then. Until then, I wait, albeit grumpily.

Got The Goods!

I picked up my Procrit and Neupogen and took them last night. Both are packaged in single-dose vials and you have to fill a syringe -- a first for me. The pre-filled interferon syringes are so much better! Not only are they handier (getting that last mililiter into the syringe is a bear!), I swear they're sharper. Perhaps pushing through the rubber stopper dulls it just a bit. Anyway, I have to do the Neupogen 3x a week and the Procrit once a week. I hate needles! But the interferon has been pretty good training. I awoke with a headache, but haven't noticed anything else I'd consider a side-effect. I've been warned about diarrhea and bone pain. Another plus for working from home!

I was shocked at the cost of these drugs -- around US$3000 for each! Next time I move around some investment money (not that there's a lot of it), I'm going to pick up some pharma stocks. Fortunately I have good insurance. Lord knows that over the years I've paid enough into the system. And keeping me on treatment will hopefully save the expense and trouble of dealing with complications!

I talked with my general practitioner last night. He believes I'm raising legitimate questions and is going to talk with the GE. The GE that I'm seeing is a doctor's doctor. My GP sends his own family to this guy for colonoscopies and such. In any case I expect to talk further and may get a referral for a consult.

Meanwhile I've been off tx for 12 days. I'm not happy about that, however some current papers I've seen in www.hivandhepatitis.com suggest that I'm still a good candidate to clear the virus due to the fact that I started treatment with low liver damage (some inflamation, mild scarring, no cirrhosis), and that I have genotype 4 rather than 1.

Now to get back on the horse!

Got Prescriptions For Procrit & Neupogen

There are still insurance hoops to go through, but they should be ready by Monday (tomorrow). The doctor says my white blood cell count is at 1500 and red blood count is at 9 and that he did not want me going back on treatment yet. He wants me to have another blood test on Thursday and then go back on assuming positive results. The trouble is, that means I'll be off the program for over two weeks by the time I get the results. Based on this article, I might be able to start back with support from "growth factors" with my numbers at the current levels. The article says, "Neutropenia is generally defined in many trials as an absolute neutrophil count of less than 750." I don't know whether the number being thrown at me is the "absolute neutriphil count," but mine was 1500 last Wednesday. He's saying he wants it at 2500. We'll talk about it.

When I first broached the subject of Procrit and/or Neupogen, the doctor's response was "I don't prescribe those drugs." At the time I had been reading in Ron Metcalfe's page and on the Hepatitis C Association page that the use of those drugs is close to routine. I suggested to him that it did not seem to be unusual and that maybe he could consult with someone because my priority is to stay on the treatment. He called me later during the day and said that he'd talked with a hemotologist and that I could pick up scrips for both drugs. He has submitted paperwork for the pre-authorization process and I've dropped off the scrips at the local pharmacy so they can order them. These are pretty expensive drugs, but dammit, they're cheaper than cancer treatments or a liver transplant.

What this boils down to is that I will be agitating to resume treatment on Monday. I am also shopping for another doctor, if only to consult with my current one and get him educated. Meanwhile, it looks to me like my chances for sustained remission may have been reduced. Fortunately, this interruption comes at Week 17. At least I'm into the treatment. Here's what the article says:

Today’s Standard of Care

Recently the importance of adherence throughout therapy was studied with regards to its affect on SVR. Maintaining the optimal dose of both interferon and ribavirin is particularly critical in the first 12 to 20 weeks of therapy. One factor that determines adherence is the quality of life of patients during therapy. Another important determinant of adherence is the ability to manage the side effects of therapy including hematologic management.

The lessons to be learned here are important. The most important is that, as a patient, I'm responsible for my own care. If that means I have to drag my care advisor into the Twenty-First Century, so be it. I suspect my doctor has gotten comfortable in his practice and has not stayed current with the literature in this fast-moving field. I'd love to change docs and I may do that anyway, but it took me a month to get in to see this guy to start treatment. That's not an unusual wait to see any specialist as a new patient outside of an emergency setting.

I'm sorely tempted to start treatment myself, however I'm thinking of consequences. If I treat myself against medical advice (nevermind, that I think it's ill-advised), my doctor could easily say that he can't work with me and then I'm on my own. I have a three-week supply of meds. Then what? As I mentioned, it's not unusual for appointments with this sort of specialist to take a month or more. Again, I'm better off educating the doc.

It's been interesting to see myself come out of the ifx/riba haze and realize that I really want to be back in it. I'm feeling about 80% normal now. I'm certainly thinking more clearly than I was on tx, but I want to go back.

With luck, I get the blood boosters AND take the ifx shot and the riba tabs.

The Doc Called This Morning

I asked about the possibility of using Procrit or other hemoglobin boosters. He said that his concern is the fact that in addition to the low HGH count, my white blood count has dropped sharply (from 3000 to 1000 in a month). It's the combination that he's concerned about. I'm looking around on the Web for instances of people using both Neupogen and Procrit. If anyone here has experience with both drugs in combination, I'd like to hear about it.

I asked him what the break in treatment will do to my chances of SVR. He said he didn't know. I stressed to him that I don't want to be fighting this thing for the rest of my life and that my priority is to complete treatment.

I will be doing a CBC test to check all blood levels tomorrow. Hopefully I'll be built up enough to get back on the horse. Meanwhile, I'm going to call my college buddy who is now an internist and get his thoughts on using both Neupogen and Procrit (or a similar combination).

Fighting on.