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.

More Anemia

Just got back from doc. My HGH level is 8 and my white blood count is 1000 (normal is about 15 and 5000). He wants me to take a break for a week. No interferon tonight, no riba through next week. He wants me to build back up before resuming tx, possibly with a reduced dose (I'm presently taking 1200 miligrams, 6 tabs per day) and I'm pretty small, 5'-6" and 145 pounds. I've seen other people's dosages in the boards and I seem to be taking a pretty large dose. He also bugged me to stay out of the gym, saying I could go over the edge without realizing it. [Grumble] Never had a doc tell me to get less exercise.

I asked him about the risk of letting the virus adapt and he said that the meds will stay in my system for several weeks, so I'm still fighting the virus even skipping a week. Right now he's more concerned about the blood levels. Procrit is a possibility, but he wants me to take a break first. My friend Ken took it and felt much better, but the sides from that were also pretty bothersome -- diarrhea, headache. Everything has a price.

The grind grinds on.

Late Week 17 Check-In

I've been spending some time on a couple of support boards. I recommend them both. One, http://hepcassoc.org/messbrd/ is kind of U.S.-centric, but with a fair amount of Canadians. The other, http://www.ronmetcalfe.com/hepcforum/, is hosted out of the U.K. There is a good deal of overlap between the boards. I found that Carol, who raised concerns about my earlier misunderstanding of my treatment plan, is Mrs. Ron of ronmetcalfe.com. So this is a pretty tight-knit little club.

Another blog I've been reading lately is http://www.hepcboy.com/. Another Englishman. He's been kind enough to post a comment or two here. I really like his British stiff upper lip. The best bit of wisdom I've picked up there regards self-discipline. "Be your own tyrant!" He's facing some challenges with his treatment, but doing it with good humo[u]r and a measure of courage.

It's helpful having folks around -- even in virtual space -- who understand what's going on. I feel like anyone who hears me talk about it is going to think I'm whining. My friend Bob checked in with me yesterday. He has pointed out some of the weird little side-effects and occurrences that go with treatment. The taste changes (which he pointed out unprompted) are driving me nuts. The lunch meat I've been making my lunchtime sandwich with for years suddenly seems like it's soaking in brine. I skipped lunch today because nothing looked good. Just ate some cereal and nibbled fruit all afternoon. Dinner was good -- scrambled eggs and hash brown potatoes.

The physical effects are certainly present. I think I've just gotten used to being tired. My son wanted to go to the gym and I figured it's time. He's getting all pumped up for football and didn't think he got enough time in the weight room. He went off and worked on his legs while I spent a half-hour or so on an elliptical trainer. It's easy on the knees and it's easy to vary the intensity. After that I did some stretches and a some light weight work. I'm feeling much better now. My back has been bothering me; that's usually a sign that I'm being too sedentary. Before we left I got on a scale and found that I've lost about five pounds. I'd been working out pretty steady before treatment. Weight is getting redistributed the wrong way.

The physical side-effects are an annoyance, but what's really bugging me these days is the emotional effects. A maudlin country song can make me tear up. My daughter's cockatiel bolted last week and I'm all bummed out. I'm going to the doctor tomorrow. We're going to talk about exercise (I need more -- I'd been avoiding the gym on his orders) and anti-depressants. I'm also having some attention problems. I'm easily distracted and the things I need to pay attention to (like maybe WORK!!??!!) don't hold my attention. I suspect I've always been a little on the ADD side. I suspect I'm like I've always been, only more so.

I'm rambling. That's something else -- once I get into something, I won't let it go. Time for bed. Work tomorrow. Doc. Hey! An outing!

Best to all.

My doctor just called

I've been operating under a misconception. My doc has no intention to stop treatment for two weeks at Week 24 as I thought. Once I'm on treatment, I'm on for at least 24 weeks, and hopefully 48. If I'm not in or near remission at Week 24, treatement stops and I look for alternatives.

The lack of a 12-week viral load test is a bit of gamesmanship with the insurance companies. He has had patients who failed to achieve a Log-2 drop in viral load at 12 weeks and their insurance company refused to pay for continued treatment. He believes that everyone should get a minimum of 24 weeks regardless because of the therapeutic effect of giving the liver a break. He said that in my case in particular, he wants to continue treatment since my liver enzyme levels are and have been normal since about Week 3.

So far so good. Thanks, Carol for flagging this and helping me get straightened out.

Week Sixteen

I've been spending some time over in the Hep C Association forums. If you aren't familiar with it, it's a good resource. I'm cwk on that forum.

I posted a question regarding my treatment plan (two-week interruption at Week 24 for evaluation and viral load test). It generated a number of questions there, just as it did from Carol. I have a call into my doctor's office to go over those questions. I haven't had a Week 12 viral load test, and the plan to interrupt treatment for two weeks stirred some concern. This just goes to show that it's a good idea to manage your own care. The doctor wants to be in control, but I'm viewing him as a consultant and advisor.

I took shot number sixteen about 14 hours late. My wife and I had gone to the resort where we were married twenty years ago and frankly, I really didn't feel like dragging needles and sharps containers with me on a romantic getaway. The idea just did something to the mood.

It was a good trip -- just an overnight. The restaurant was the highlight. We spent over US$100 in the restaurant and that's without wine (which I really would have liked, but obviously I'm on the wagon). I had a swordfish steak and she had halibut. Truly an amazing dinner.

I'm feeling pretty good this week. I had some concentration problems yesterday. It seems like Monday is my day for congnitive issues lately. I'm a little better off today, but I don't think this is a good time to take up a new skill.

I mentioned Bob, who went through the program some four years ago. He called me again on Saturday just checking in. Interesting guy and very encouraging to talk with. He has tipped me off to several side-effects. One is the funny metallic taste (he calls it lead-like, I think of zinc) that I have in my mouth. He says that post-treatment one of the things that has stayed with him is an appreciation for good food, well prepared. Having a taste for good food, I was pleased to hear that. I suspect I may have a similar experience.

Bob says that he usually has one or two people in his queue that he checks in regularly with and talks them through treatment. When this is over I intend to return Bob's favor by helping others in the same situation.

Cheers, all.

Monday of Week 15

Took shot 15 Friday night. I was up and active Saturday and Sunday. Sunday, is usually the toughest day. I was tired, but functional. Today is Monday. Again, I'm tired but reasonably functional.

I'm getting some annoying minor side-effects. One corner of my mouth or the other constantly has a crack. I sometimes get those when I have a cold. Not a cold sore, but similar. Last week it was the left side, this week it's the right. I keep Car-Mex or some similar greasy product on it to keep it from drying out and breaking open. Another thing I'm dealing with seems like constant sinus problems. I seem to be having lots of allergy issues -- something that never bothered me previously. I get a lot of bloody noses, too. Never a lot, just a minor seep. I'm also getting a funny metallic taste in my mouth. It's not terrible, but it seems to distort the taste of some foods. Those are all annoyances. I'll take them compared to other issues I've had or, worse yet, heard of others having.

A friend of a friend who has been through this called me last week. "Bob" is four years out of ending the 48 week course. I commented that he must have been a pioneer. He was. When he did his round, the peg-interferon with Ribivirin wasn't approved in the US. His doctor had him ordering two different medications and he was throwing away half of each. I didn't quite understand it all, but it was an extra hoop. He had Genotype 2, but did the full 48 weeks because that was the protocol then and they hadn't really sorted out the genotypes when he started. I have Genotype 4 and they recommend 48 weeks, but the disease is new enough that they may have some new research. The doc keeps saying he'll find out for me whether there are any new changes. He made the call while I was there last time, so hopefully next month I'll have an answer. If I were to bet, I'd bet I'm in it for the full 48 weeks. Bob's call was really encouraging. The mutual friend was with him on a 100 mile bike race last month. In other words, he has his life back. If anything, he's stronger than ever, according to our mutual friend.

To Sue in Toronto, yes, the weather's nice this time of year, but when it's 115 F/46 C we'll see how envious you are. I've kept my walks up pretty well. My dog nags me, which helps.

She lives for her walk. That's when she gets to chase cats. She doesn't do anything to them, just the chase. One night the cat on the next block mosied out in front of her and paused looking back waiting for her to give chase. All in good fun.

If they don't run, she just kind of sniffs and moves on. Australian Shepherd -- great dog, but they need to be active and stimulated, hence the walks off the leash. She won't cross the street to visit another dog and won't start chasing a cat unless she gets my okay. I wish I could say it's my great training. No, she's just smart enough to know what she needs to do to get to walk without the leash.

Week 14 - Who really gives a... ?

I'm nearing the end of Week 14 and I now think I understand what someone here referred to as "hitting the wall." I wouldn't characterize it as hitting a wall so much as trying to run across a mud flat. As I've mentioned previously, I work from home which is both good and bad. One bad side is that I work on the Internet. I'm having trouble concentrating and find myself aimlessly surfing. I've learned a lot about things I might not have looked up otherwise -- musicians I hear on the radio, drugs both therapeutic and illegal, topics on Slasdot (http://slasdot.org/).... None of which is particularly helpful in getting work done.

I didn't even have enough ambition to post this -- I had it virtually finished on Wednesday, posted on Saturday.

Week 13 mid-week check-in

I'm into the second quarter. I don't know whether I'm feeling better, or just used to feeling lousy. What I'm having a very difficult time with is the limitations. It's already getting warm here in the sunny southwest. We're expecting above-90° F / 33°C this week. Consequently, it's time for one of the little rites of spring in this part of the world, opening up the swamp cooler.

For you fog-bound folks in northern latitudes, a swamp, or evaporative, cooler is a form of proto-air conditioning that works by forcing outside air through a wet pad. It only works when the humidity is low -- that means a dew-point of no more than 60 °F / 16 °C . Current dew point is 37 °F / 3 °C, so it's ideal. Above 60 °F / 16 °C and it's miserable.

There are other disadvantages as well -- the increased humidity in the house can cause doors to stick and rust in the ductwork, and since it's pushing outside air through the pad, it brings dust into the house. Not a good plan for those who have allergy problems. I doubt that I'd install a swamp cooler, but it was on the house when I bought it and it's a better quality system. And the thing runs for pennies a day which appeals to my Scottish heritage.

Anyway, it was time to clean the swamp cooler up and get it ready for the season, but my wife had a fit at the idea of my going up to the roof. I occasionally get dizzy, but I've never blacked out. At her insistence I called a friend. He was anxious to find a way to reciprocate us for when he was down with a bad back, so I guess what goes around comes around.

I have a friend who I've written about previously. He has Genotype 1 and relapsed six months after going through the full interferon/ribivirin program. He also went onto Infergen, but that caused some horrible psychological problems including depression. He made the mistake of answering a question about self-destructive feelings half-seriously and found himself in a lock-up on suicide watch. That was a couple of years ago. Now they're just monitoring. His liver's in pretty bad shape. I don't know what else they'll do; it's like a company that is in financial trouble and puts the accountants in charge. They can tell you the exact moment that you're broke, but I don't know what they'll do to solve the problem.

Anyway, he had a biopsy last Tuesday. On Friday he was in the emergency room. Apparently the biopsy clipped a bile duct which caused approximately the same issue as a gall bladder problem. They may be able to treat it with anti-coagulants. I need to call him. I think he's coming home today. Real role-reversal there -- it started out with him holding my hand through the beginning of treatment. Now I'm trying to be someone he can lean on.

Meanwhile, I'm doing comparatively well. I'm tired and I don't feel like running or doing other hard exercise, but I walk the dog a mile or so nearly every night. I come in feeling like I've run a couple of miles, so I guess it's a good thing. Emotionally, it seems that everything is right on the surface. I'm irritable, but I have enough of a sense of humor to recognize it. My daughter was telling me the other night that it's like her daddy isn't around. There's a stranger. He's nice enough, but it's not the same. I asked her if it's that she's not used to me being wimpy. She laughed and said maybe that was it. I know I've kind of disconnected with all the kids. I have to make an effort to talk with them and see what's going on.

I'm spending far too much time on this. Got a work call and things are stacking up.

Cheers all! Keep my friend Ken in mind in your prayers, meditations, or whatever you do.

Correction -- This Is Week 11!

Mid-week check-in.

Replying to Carol's note to my previous post, yes, I'm definitely hitting something. I'm really foggy. Example: this is Week 11, not Week 10. I was really surprised to see only two syringes in the box on Friday.

My motivation is somewhere around zero, yet I have this weird inertia. Once I start doing something I just continue doing it. But it's really hard to get started. Emotionally, I'm kind of crabby, but no more anger like I experienced a couple of weeks ago.

The physical aspects are really improving. I was up all day Saturday and was really active all day. Shot a good round of skeet (22 of 25). That's good for me; I haven't shot in six months or more. Quality time with the kid was an important bonus.

Sunday I crashed and slept close to four hours in the afternoon.

Monday and Tuesday at work have been challenging to say the least. I work with lots of complex things and inter-relationships, not to mention lots of people. There are a lot of plates in the air and I have to have an idea where they all are.

A friend of mine is a Genotype 1 relapser. We were planning on going to a support group meeting, but it was cancelled. I detect a change in that relationship. It seems he's starting to lean on me more where at the start of this I was really leaning on him. That's fair - I've got a good chance of seeing this thing go into remission and being done with it. He could be facing a transplant in the next few years. Little dose of reality there. My friend does a good job of keeping my perspective straight.

Week 10 -- Double Digits!

For the past couple of weeks I've been doing pretty well. "Pretty well" is relative, of course. It means I haven't had to punch out and lay down on the couch in the middle of most days. I am blessed to work from home and can do that now and then. Nobody on a conference call knows whether I'm laying down or not.

I have noticed that I'm pretty foggy. That's a fact that was not lost on a project manager at work when I asked him a couple of questions I already knew the answer to. Yesterday I'd have sworn that my wife came in and talked with me.

"Where'd your mother go?" I asked my daughter.

"She's working late today."

Sheesh! I was recalling a conversation from the previous day. It's all running together.

Emontionally, this is a strange time. I caught myself getting really angry over something trivial last week. I realized I was being stupid in time to stop being too much of an idiot. It seems like my emotions are right on the surface. I wonder how much of this is chemical and how much is circumstantial. I'm also cursed to work at home. This is like house arrest. All I need is an ankle bracelet.

My son and I are going to the range tomorrow to shoot a round or two of skeet. Saturdays I'm usually pretty good until mid- to late afternoon. I need the outing.

It's shot time. In Frank Herbert's epic Dune the main character is tested with something called a gom jabbar. "It only kills animals," says the tester. The gom jabbar is a poison needle that the tester holds to the lead character's neck. As long as he keeps his hand in a box, the tester doesn't stick him. "What's in the box?" he asks? "Pain." He puts his hand in and thinks his hand is being burned away, yet he has to endure. To do the instinctive -- the animal -- thing and avoid the short-term pain is death.

There's a parallel here. As long as I keep sticking myself -- and taking the little blue pills (shudder) -- I have a pretty good chance at a normal life. Skipping meds proves that I'm not smart enough to be a human.

So with that thought, I'm off to endure another round with my gom jabbar.

Week Eight

Saturday Afternoon. Took my shot last night. This is usually the time I start fading. I've been up since around 9:30 doing chores -- light stuff, mostly directing my son and a buddy of his. It's now almost 4:30 PM and I'm still somewhat functional, although tired. Way better than last week. I finished off my second box of IFX (or whatever the Hep C cognoscenti abbreviate it to). I'm one-sixth of the way there. The shot was almost routine. My head was clearer as I went through the process and my hands weren't shaking. I'm almost used to it. Maybe that's over-stating it. But at least it doesn't freak me out like it did the first few times.

Ran into a neighbor at a school function on Friday. We had told her about my problem. She and her husband went to give blood last week. She got a nice thank-you card, but he got this manila envelope. Yup. He has Hep C. I need to buy stock in Roche (company that makes Pegasys). By the end of this decade there will be few people who don't know at least one or two people with this disease. Got to call him. I won't sugar-coat it -- this is no fun. But there's worse things to face.