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.