Eight jabs to go

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

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

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

How to inject Pegasys

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

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

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

Roche Pegasys Syringe

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

Assembling the syringe

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

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

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

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

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

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

Preparing to inject

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

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

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

Injecting

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

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

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

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

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

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

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

Post injection

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

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

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

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

Countdown Enters Single Digits

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

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

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

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

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

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

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

Saw the doc yesterday

Good news: ALT = 29, AST = 24

Not so good news: WBC = 2000

Even less good news: HBC = 8.7

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

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

Ruminating

A father's life is one of quiet dread

—Henry David Thoreau

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

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

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

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

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

Week Minus 10 — Stalling

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

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

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

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

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

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

Ah, shaddup!

Week Minus Eleven

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

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

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

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

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

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

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

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

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

Be well.