Thanksgiving Week

Discovered I had left the previous update in a draft state when I posted it two weeks ago. Back from the business trips and the hunting trip. Son got his deer, I missed my shot (it's been replaying in my head for days). I now count the miss as an act of kind providence as we were more than a mile from camp and had pack out the quarters -- two rucksacks at I'm guessing 40 pounds each. Lot of work, not to mention a mess. I'll spare you the details.

Much to be thankful for this year. I have a new appreciation for feeling good. I know that not everyone gets this blessing, so I'm especially thankful that I'm able to undertake some pretty strenuous challenges. Thinking about a marathon next year. I've fallen off my running lately and need to get back to it.

Happy Thanksgiving,

Chris

Checking In After Three Months

A comment to the previous post brought me back, so I may as well check in. Yes, I'm in a hotel again. A new project, a new nightmare. I'll say it's a mess and leave it that.

I'm due for another liver panel this month. I'm not worried about it.

I've spent the past six months making up for a year with my life on hold. I'm working to bring a book into print (unrelated to both work and Hep C) and trying to get home projects taken care of. That's difficult now, as I'm paying for the bye year from work. Lots of air miles these days. I was looking at my calendar for the rest of the year and I'm back to back. I've been in Tennessee for the past two weeks, going home for the weekend. I'm taking a couple of days to go deer hunting with Son and so won't travel next week (historically, Bambi is pretty safe). The following week is Thanksgiving, after which I have two classes for two consecutive weeks. After that, I'm back here to see what's happened on the project. Who knows what happens after that.

I have to get some work done for tomorrow. To those on treatment, blessings and best wishes. There's an end to it and you can get your life back. That life can be overwhelming at times, but it's sweetened with a new appreciation for health.

SVR

I went to see the doc last Wednesday. I had returned from a business trip and dropped off a blood sample, but the PCR took too long. The ALT and AST liver enzymes were 16 and 22 — which is which is irrelevant — and the red and white count levels were normal.

But the real news came in a phone call fifteen minutes ago. Undetectable.

Doc says I'm in remission. He's hedging by calling it "remission." He said that he's seen it come back even after being gone for months. Maybe so, but what I've read leads me to suspect it might be re-infection.

For practical purposes, I'm done. I see a few residual signs of the fight, but how many fights do you go through without some scars? I'm functional. I have my life back.

Thanks to those who have followed my fight here. The encouragement and advice have been invaluable.

If you're coming to this because you or a loved one are facing the disease, hang in there. This is a beatable disease. There's an end to it, and it need not be a sad ending. I'll leave this blog up and will check in periodically, but its main purpose is fulfilled.


All best,

Chris

No updates since April???

Wow! I've really let this thing slide. Naturally, I'm traveling on business again. It hasn't been constant — I didn't travel at all during May and June. Eldest graduated from high school, and was appropriately feted. She's going to Northern Arizona in Flagstaff. I'm hoping to see her take college a little more seriously than she did her high school classes. She took school very seriously as far as student council and prom planning went. But those pesky classes... Now that she's starting out life in debt, she's beginning to get a glimmer of why we nagged and bitched at her so much when she was slacking in her freshman and sophomore classes.

The deal is that we've financed the first year. It's now up to her. Scholarships and her own work and credit. Actually, I think she'll be a better college student. She's certainly smart. And she either has us totally snowed (always a possibility) or she's a very straight arrow. I went around the block far enough to know what being drunk, stoned, or otherwise altered looks like. I've never seen it in any of my kids. And yes, I look for it.

Anyway, here's where I am with the bug. I'll be dropping off a blood sample as soon as I get home on Friday for my would-have-been six month PCR. I had a liver panel and CBC a couple of weeks ago. The doc had not ordered a PCR. I nearly circled the PCR on the lab order form. Called the doc from the lab, but didn't hear back from him until the next day. "Yes, it'd be a good idea to get that...." Brilliant. Anyway, all the rest of the bloodwork looked good, so I'm pretty hopeful. I've even allowed myself the occasional beer. I even had one this evening — along with sushi! I'm totally out of control. I think that's like four since May.

Back in February I ran down my list of sides. Here's an update for the record.

• The Itch

What itch? I'm still taking Claritin, but that's for a constant "harumph" and sneezing. I've always had a touch of allergies, although they seem worse now than they were years ago. But that's common for Phoenix residents. Recovery: 100%


• Hair

My hair is much darker and definitely thicker. Oddly, it's now straight. When I it puberty it curled up and stayed that way. Not curly like a Black person's hair, but definitely wavy. Recovery: 80%


• Nails

My nails are far stronger, but they do tend to crack more than they did. Recovery: 90%


• Brain Fog

I've been amazed at what I had trouble doing before treatment. I work in the computer industry and in my business, if you aren't on the front end of a learning curve in some aspect of your job, you are going to get passed by. I'm reading books again (e.g. Shirer's tome Rise and Fall of the Third Reich, something I've tried unsuccessfully to wade through in the past). In retrospect, the cognitive effects were the worst. I'd revise my previous assessment. I was about 60% then. Recovery: 90%


• Fatigue

I really think this one has gone. I feel good. I don't have that overwhelming "blah" feeling. Recovery 100%


• Mood

I'd now describe myself as a happy person. Frankly, I have few excuses not to be. My friend Bob, who rode through this thing with me described himself as less willing to tolerate bullshit. I'm not so much intolerant as willing to laugh things off. Recovery: 100+%


• Sleep

I sleep well. I still stay up late. I'm far less able to fake it than I was, but that isn't an entirely bad thing. If I get less than seven hours of sleep, I pay for it. But at least I can sleep, and the sleep refreshes me. Recovery: 100%


• Diet and Appetite

I think I'm recovered here. In fact, I'm having to dial it back. I want to drop about five pounds. Recovery: 100%


• Exercise

Still not enough! I have a year's worth of sitting on my (widening) ass. I need to make some lifestyle changes and schedule time for exercise and do it. On this trip I've been off and on. Need to get back on. I'm certainly not limited by anything physical. Recovery: 100%


• Aches and pains

Done with this one. The aches and pains I have these days are pretty identifiable (often traceable to people I work with). Recovery: 100%

Summary: I'm not in bad shape for the shape I'm in. I turned 50 two weeks ago. There was a time that I thought 50 was pretty old. I've seen 50-year-olds who certainly looked and acted older than I feel. I just need to continue in that vein. I'm hopeful about the PCR test, and not terribly anxious. If it's back, I evaluate. I don't think it is though.

If you're reading this from the depths of treatment, there is an end to it. The recovery, while not instantaneous, does come. Hang in there.

Okay, Enough Nagging

My Uncertain friend wants an update. I am capable of updating this blog outside of airports. To prove it, I am presently ensconced in my own office chair in my own converted dining room home office and typing on my vintage 1984 IBM Model M "Clicky" keyboard. I bought it on E-Bay a couple of weeks ago because my hands were killing me from typing on my laptop keyboard. I briefly considered taking it with me on my last trip, but decided against it. Th thing weights about six pounds (three kilos). This is as close to a perfected machine as we have in the IT industry.

And of course, it's obsolete.

I've been in this industry long enough to be a curmudgeon.

Dodgeball

But dear UC wants to know about family and kids, being as how she can no longer read minds. The kids are great. Winding down the school year. Eldest is committed to NAU. I cut yet another business trip short last week to referee a dodgeball tournament at the high school on Firday. Eldest and Middle (aka Son) are in student council and had come up with the tournament as a fundraiser. A fun, but exhausting evening. The team registrations paid all their expenses ($40 per eight-person team and they had 20+ teams) and they committed the door receipts to a charitable cause, the family of a kid in Middle's sophomore class who had turned up with leukemia (of which more shortly). The concession was their fundraiser and netted them over $600 which made it a decent night's work.

Rough Treatment

We've known the kid with leukemia for several years. Son played Little League baseball with him. He was playing in a baseball game and started feeling bad enough that the trainer told his dad to take him to the ER. I would not trade 48 weeks of treatment for one day of what those parents are going through.

As for the kid, well, we all know that hep C treatment is long and grueling. To those on treatment: when when you start feeling sorry for yourself (and you will), consider what this kid is facing.

• He has one of those ports installed in his chest where they can dump chemicals directly into a major artery because the stuff is so toxic it will destroy veins.



• He has lost his hair. Not thin hair, no hair.



• He is on massive doses of steroids giving him a moon face even though he's lost twenty pounts.



• His white blood count was so low last month that he was confined to two rooms of the house. Anyone entering had to leave their shoes at the door and wash up. If he went out, he had to wear a mask



• Oh, and his treatment calendar? Three years.

I know what treatment is like. I won't minimize it. But, it's a piece of cake compared to full-on chemo. Never forget that. If I have to face a potentially life-threatening disease, hepatitis C is my first choice.

I'm putting my foot down and I won't travel for the month of May — and will probably get more done without the overhead of traveling. Our anniversary is coming up next week (21 years! Our marriage is an adult!). Of course we won't be doing much to observe it until maybe June. Youngest is in a musical and Eldest is graduating from high school. Family and friends, and all that.

With that, I'm out of here. I have an 8:00 AM Eastern Daylight Time (that would be 5:00 AM Arizona time).

Friday the 13th

I'm traveling on business again. I've been to the Richmond, Virginia area three times in the past six weeks. And I'll probably be back again. I'm rusty at this road warrior thing. There was a time I did it pretty regularly as an instructor, but for the past ten years or so I've stuck pretty close to home.

Much has changed.

First of all is the process of traveling itself. I'm old enough to remember a time when you walked straight from the ticket counter to your flight. The advent of metal detectors provoked predictions of the death of American civil liberties and the Fourth Amendment. The Fourth Amendment didn't die then, but it started getting sick then.

I don't think the current practice of a partial strip-search would bother me quite as much if it made me feel any safer. It doesn't take too much imagination to cause lots of havoc on an airplane that might not be detected by current methods. Conversations with a friend who took a temporary job screening baggage for TSA have done little to ease that concern.

Nothing to do about it.

Today is Friday the Thirteenth. I've been operating on the assumption that things will go worse than they have so far.

I cleared out of my hotel this morning and had that sinking sensation that I'd forgotten something. I could not find my jacket anywhere. I remembered taking it off in the restaurant the night before. Aw shit moment.

Go back to the restaurant. Nobody there.

Back to the hotel check the room. Not there.

Check the car. Not there.

Dial into a conference call on my cell.

Call the restaurant. They don't see it.

Another conference call.

Sudden realization: It's in my suitcase. I remembered hanging it up.

Get my jacket and go to the customer site using my handy little navigation feature on the phone. Make a wrong turn despite the navigation tool. Realize it just as the navigation thing tells me to turn around.

At the airport. Eat lunch in the Appleby's at the airport. Get my computer out and do a bit of work. Finish lunch and walk out with laptop. Sudden stop and return to get case from under table.

Boarding the airplane at last. But first, I can't tell my seat from my gate on the boarding pass. A nice young lady takes my pass from me and tells me where I should sit with the same caring look that I might give as I hold the door for my grandmother.

At the connection. Where's my boarding pass for my connecting flight? No, that's from my last trip. Get the current one. Check gate information. Good. Throw away boarding pass (that's speculation -- I just can't find it). The gate agent printed a new one. Might have been even more interesting if I hadn't put my drivers license back in my billfold before losing the boarding pass.

I'm still in the air. There's plenty of time for things to go wrong, but I'm not going to borrow trouble. Besides my battery is low. In more than one sense.

April 18 Post-Trip Addendum

I survived. The plane arrived an hour and a half late. We were dodging the weather in the accompanying picture. I've flown on all kinds of planes, big and small. We were above 35,000 feet (10,000 meters) and the clouds out the window were a good 10,000 feet (3,000 meters or more) above us. The pilot confirmed my guess.

Was all this the aftermath of treatment? Or did I just have my head in my ass? It's really hard to say, and it probably doesn't make much difference. I have to go back next week.

Back Home — For Now

My business trip to Virginia got extended into the following week (Valentine's week — yeh, that went over big with my wife). I spent the weekend with family, and then returned to the job site on Sunday night. I had a commitment to take my daughter to a university open house this past weekend, plus an appointment for a physical on Monday (today, as I write), so I put my foot down. I had to be in the air going home on Thursday and would not be returning until late this week (the week of February 18), or better, next week. I hope to push the trip out to next week. I have what I need to get started, and all the standing in security checkpoint lines and riding airplanes is time poorly spent.

Medically, I think I'm doing well. This physical today will tell the tale. I've mentioned a few lingering side-effects with how much I think I've recovered. The Recovery percentages are compared with how I felt before treatment. Purely subjective, but perhaps useful for comparison.

• The Itch
  An annoyance. This is actually a recovery from a recovery symptom. I'm taking an anti-histamine (Claritin). When I back off the anti-histamine, the itch starts again. Even with Claritin, I get bumps similar to mosquito bites that come to a head and leave little sore — much like a mosquito bite that's been scratched. I also have gotten a few mild canker sores in my mouth (never more than one at a time, and never especially bad), which I suspect are also related. I never had any significant skin issues on treatment, so this all came as a bit of a surprise. Recovery: 50%
  
  
• Hair
  I don't know whether the nails and hair issues stem from interferon or ribavirin. Since it takes a while for the drugs to go away, and then for the hair and nails to grow out, it's not surprising that these side-effects linger. The strange effects on my hair are definitely present — it's all thin and wispy. But my wife and kids swear that the hair on my head is getting darker. I've read other reports of being able to see new hair with a different texture coming in. I haven't seen that yet, except for my beard which is definitely changing. My would-be mustache is darkening and getting more coarse and the dark whiskers seem to be spreading. It's like puberty all over again. Recovery: 10%
  
  
• Nails
  My fingernails started getting thin and brittle several months into treatment. I just learned that fingernails grow at about 0.1 mm per day, or a centimeter in 100 days. So it will take about three months after the drugs work out of my system for fresh nails to grow in. Again, an annoyance. I have to keep them cut short as they tend to split and the split can work its way down into the quick. Recovery: 0%
  
  
• Brain Fog
  I'm a reasonably bright guy, but I've always been easily distracted and not terribly disciplined. I'm still dealing with that. On treatment I had a very difficult time focusing. I'm still having some of that. Case in point: I'm playing with my blog and really need to get back to reviewing a proposed solution that our enthusiastic sales team has concocted. But that's boring and not nearly as fascinating as my treatment adventure. Recovery: 80%
  
  
• Fatigue
  I think the main issue here is my bad habit of not sleeping enough (five to six hours per night) coupled with a sedentary lifestyle for the past year. One thing I've learned is to nap, however that's been tough while I've been on a Death March travel schedule. Toward the end of the day, I find myself fading and not paying attention well. Recovery: 75%
  
  
• Mood
  I went off my anti-depressant at the same time that I quit the rest of the medication. I was on a pretty light dose anyway. My family says I'm more fun to be with. I certainly do better in social situations. I no longer tear up at the slightest provocation, which is a relief, although I think I'm still a little more emotionally sensitive than I was at the start. I also think that being in a better mood, I may be more creative and more willing to explore possibilities. Recovery: 90%
  
  
• Sleep
  I still have trouble falling asleep. That's normal for me — I tend to ruminate when I go to bed and it's often difficult for me to fall asleep unless I'm dog tired. That has been a fact of life for me for years. Where I've gained some ground is that I'm more willing to take a nap during the day. I'm more aware of performance falling off. If I'm able, I take up a prone position on the couch. If not, I at least shut up, as I sometimes get kind of manic when I get tired. Recovery: 100% Plus
  
  
• Diet and Appetite
  My diet was pretty good going into this adventure and it hasn't changed significantly. What has changed is that the metallic taste has disappeared and I no longer have to force lunch down. That's a relief. I do seem to have a bit more of a sweet-tooth than I had previously, and I don't crave fruit like I did while I was on treatment. That's bothersome, particularly having a suddenly heavy travel schedule. At the very least I need to be aware. Recovery: 85%
  
  
• Exercise
  Not enough! But I'm certainly more capable of exercise than I was back in December and January. I can get on an elliptical trainer and get my heart rate up to 185 or 190 in about 15 minutes and keep it up for a half-hour. I haven't started running yet. I expect to get clearance to run today. I have an appointment for a physical today that should include things like an EKG and probably a pulmonary function tests. Recovery: 75%
  
  
• Aches and pains
  Adding this later. I had nearly forgotten it until I took my daily dose of ibuprofen or acetaminophen. I rarely took either prior to treatment. It isn't bad, but it's definitely there. Joint pain, headache, undefined discomfort that goes away as the analgesic kicks in. Like virtually everything else, I'm not miserable. But I know I'm not all the way back. Recovery: 75%
  
  

So that's where I am as of February 19. I was fortunate to have mostly moderate side-effects all the way through treatment and feel like I'm being blessed with an easy recovery period.

If you're interested enough in this sort of thing to read this far, then you must be dealing with treatment in one fashion or another. Hang in there. There is an end to it, and even if treatment doesn't kill the bug, there are long-term benefits to giving the liver a chance to heal. The fact is that we're all going to die. Winning in this case is defined as not dying of liver failure caused by Hepatitis C. A knockout is cool, where the treatment kills the virus, but it's also possible to win on points. Many people die with the virus but not from it. Thar's a win as well and treatment improves the odds.

In the air

I'm traveling on business. I was trying to work on some drawings, but the turbulence on this flight is too bad to do anything that requires working with a mouse. So, I'm writing this in a text editor that only requires hands on a keyboard.

This is my second trip in three weeks. Last month I was in Chicago and Milwaukee. I've been working on that project since July. It was a slow-motion train wreck, but seems to be getting better. The solution sold to the customer was impossible. Neither the customer nor the sales team talked to the technical teams. Hint: To move a data center you don't back a truck up to the old data center, load it up, and ship everything 1000 miles to the new data center, and move everything inside. There are things to go wroing. What if something doesn't come up? Are you going to ship it back? How about a scenario involving a truck in a river? I work for a big company, and they can get stuff pretty quickly from the vendors. But it isn't likely to arrive fast enough to keep from doing a lot of damage to the business.

A realistic solution eventually emerged, but the dates from the original contract were totally whacked. My job is to plan the transition piece. Implementing those plans takes it into another stage, so my piece is done. The Boss popped up in my online chat window on Wednesday. "Looks like you're done with {customer}. Be in Virginia on Monday. Here's the guy you need to talk to for details." Cool. I have family in Virginia. I'm traveling a day early and will watch the Super Bowl with them.

Recovery continues. The itch has pretty much subsided, but I notice that my lips are still swelling like they do sometimes when I eat cantalope. I'm continuing to take antihistamines with a break every couple of days to see whether it's still an issue.

The most noticeable lingering side effect is the hair. My barber recently took on a regular job (it was time for a job with benefits) and I went to a new one. I had not been to this shop before and the girl cutting my hair commented how thin it was. As my previous barber said, the only thing to do is cut it short.

Battery dying. Time to go.

"Ichabod is itchy...

...So am I!" Quoting Dr. Seuss's ABC, the best alphabet book in the English language.

Indeed I am. From scalp, to legs, and -uhm- in between. I know about the last bit. The past year of enforced sedentary living has resulted in a hemorrhoid flare-up. Hopefully I'll get rid of that as I start working out and get more active.

The skin thing has me kind of mystified. I went through 48 weeks of treatment and had hardly any skin problems. The weather hasn't changed significantly since I went off treatment. I did get a bit of scalp itching when I was on my treatment hiatus. I attributed it then either to the Procrit or to the Neupogen. Now — literally now; this just occurred to me — I'm wondering if it isn't a withdrawal symptom. It stands to reason that since my body had to adjust to the presence of the meds, then it would have to readjust to the absence of those same chemicals. Anyway, my scalp is itchy and I've got tiny itchy bumps. It still isn't terrible, not like a case of hives or chiggers. Just an annoyance. During the last couple of weeks of treatment my eyelids also developed rough patches, but that symptom is fading. I'm also finding that the body aches have been replaced with headaches. It will pass. It will all pass. It's beginning to sink in.

I'm done!

This was the first week back at work after the holidays. I'm amazed at how much my mind has cleared in just this week. I'm finding stuff I did at work and I'm a) suprised that some of it is pretty good, b) surprised at the really big things I forgot, left out, or let slide, and c) surprised that some things somehow got done by someone acting as me, but I have no recollection at all. It was also the week of my review. Under normal circumstances I'd consider it a so-so review at best, but given the circumstances, I consdered it a rave. Told the boss and thanked him. He's been a huge part of making this thing bearable.

I have paperwork for a blood test in three months. I think it's just for the standard liver panel. I'm going to ask for a PCR at three months. I think that will tell me what I really need to know.

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.