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.