Show me the movie that doesn't deal in black and white

Last Post

2008-05-23T09:13:00.000-07:00

Well, this day came a few months sooner than I anticipated. I just got my final Hep C viral load test results, and I'm still NEGATIVE, which means that by all measures and standards, I have cleared the virus permanently. That's it, I'm done.

I believed this day would come, but there was always this little itch of doubt at the back of my mind. That itch just got scratched for the last time.

I'm inclined to say I'm cured, but there is the remaining damage to my liver, caused by 20+ years of playing host to the virus. However, I also know (thanks to other tests) that the damage hasn't gotten worse since I finished treatment, and in fact, might actually be showing signs of modest healing.

Looking back at the odds, this was a serious long-shot. Hep C, type 1a (which I have -- no... HAD!) is one of the most difficult to treat. With the full cocktail of Peg-interferon plus Ribavirin, the odds of success were about 50-50... maybe a little better. But if you read back through this blog, you'll note that I had to drop the Ribavirin early on in the treatment, thus lowering my chances of success to 10%. Maybe even lower since I'm a hemophiliac, coinfected with HIV.

If you want proof that mind-set is everything, here it is.

So this is the coda to the symphony that was my experience with Hep C. The story is told and all loose ends have been tied up. That said, this will very likely be my last post on this blog.

I'm going to leave the blog live, as I've always intended it to be a resource for other people living with Hep C and facing the question of treatment. I genuinely hope you find it helpful, and wish anybody in that position who's reading this the best of luck with whatever decision you make. The treatment options are continually improving, and that's cause for optimism.

As before, if you ever feel inclined to drop me a note to ask questions about treatment or just to let me know you saw the blog... by all means, do so!

Be well.

PDF Digest, Finally!

2007-12-30T16:09:00.000-08:00

Hey all,

Short post today to wish you all a very happy and healthy new year, and to let you know that I've finally finished converting my blog to a downloadable pdf file that you can read through from start to finish (rather than Blogger's cocked up "most recent post first" order). I wrapped it up at the last July post, as everything that follows really doesn't have much to do with treatment. I also cleaned it up and had a little fun with the layout (iWork Pages is cool!) so it's a little less... sterile.

If you have a slow connection, brace yourself... it's a big file (almost 15 MB!)

You can download it here.

Happy reading.

Cheers!

Epilogue?

2007-07-27T12:36:00.000-07:00

As mentioned in my last post, I've cleared the 6-month post-treatment hurdle, which means I'm pretty much out of the woods as far as the HepC virus is concerned. We knew going in (from my biopsy) that there was some liver damage (I have what they term "compensated cirrhosis"). Basically, I have some scarring and nodules or isolated pockets of cells, but my liver seems to be functioning more or less normally, despite that fact.

In any event, the docs want to keep an eye on my liver so they can respond to any threatening changes quickly, although we don't expect the cirrhosis to get any worse now that the virus is cleared and the inflammation has gone down. This means an abdominal ultrasound every 6 months. My last ultrasound (back in January) looked pretty good, and showed very little change from the prior test, taken before I started treatment.

That brings me to the current turn of events. I had an ultrasound last week that showed some new abnormalities that my treatment team wanted to investigate further, just to rule out anything serious. Note here that I'm feeling great and my labs are more normal than they've ever been. So yesterday, I had a follow-up MRI (I'm just waiting for the machine that goes ping!), and it turns out that there are a few (maybe half a dozen) small cirrhotic nodules, and while they don't believe they're cancerous, they want to keep an eye on them and do another MRI in four months. I get that they're doing everything they know how to keep me alive and healthy, but for Christ's sake... when does it end?!

Yeah, I'm a little anxious and frustrated about this. Am I going to let it get me down? Of course not.

Anyway, enough of that. On to more positive things, I promised pictures from our trip to Montana, and here are some of my favorites. I shot nearly 150, so this is just a small sampling.

Taken from the patio of the East Glacier Lodge

Just outside of the park on the East side (Blackfeet Reservation)

On St. Mary's Lake; yes, the colors are THAT vivid!

Cascade fall near the top of the Road to the Sun
(which was still closed near the summit, due to weather damage)

And lastly, a friendly and surprisingly tame doe who
hangs out near the Road to the Sun and greets tourists.
At one point, she was about two feet away from me,
despite my efforts to keep at a 'recommended' distance.

WAAAAAAAAA-HOOOOOOOOO!!!!!

2007-07-10T08:44:00.000-07:00

Yep. I got my labs back. HepC RNA (PCR): NEGATIVE

For those of you that haven't been following my blog, this is my six-month post-treatment followup test... so the viral load coming back negative is a pretty big deal. Actually, it's a WAAAAAYYYYYYYY big deal! :-)

My other lab results also look really good. Rather than throw a lot of numbers around, here are charts of my labs for the last year or so. They paint a pretty obvious picture of the state of my liver. The red line represents the high level of the "normal" reference range. Explanatory text is from the Healthwise Knowledgebase.

AST - Low levels of AST are normally found in the blood. When body tissue or an organ such as the heart or liver is diseased or damaged, additional AST is released into the bloodstream. The amount of AST in the blood is directly related to the extent of the tissue damage. After severe damage, AST levels rise in 6 to 10 hours and remain high for about 4 days.

ALT - ALT is measured to see if the liver is damaged or diseased. Low levels of ALT are normally found in the blood. However, when the liver is damaged or diseased, it releases ALT into the bloodstream, which makes ALT levels go up. Most increases in ALT levels are caused by liver damage.

Total Bilirubin - A bilirubin test measures the amount of bilirubin in a blood sample. Bilirubin is a brownish yellow substance found in bile. It is produced when the liver breaks down old red blood cells. Bilirubin is then removed from the body through the stool (feces) and gives stool its normal brown color.

Bilirubin circulates in the bloodstream in two forms:

* Indirect (or unconjugated) bilirubin. This form of bilirubin does not dissolve in water (it is insoluble). Indirect bilirubin travels through the bloodstream to the liver, where it is changed into a soluble form (direct or conjugated).

* Direct (or conjugated) bilirubin. Direct bilirubin dissolves in water (it is soluble) and is made by the liver from indirect bilirubin.

Total bilirubin and direct bilirubin levels are measured directly in the blood, whereas indirect bilirubin levels are derived from the total and direct bilirubin measurements.

AFP (alpha-fetoprotein) - In men, nonpregnant women, and children, alpha-fetoprotein in the blood can mean certain types of cancer, especially cancer of the testicles, ovaries, stomach, pancreas, or liver are present. High levels of AFP may also be found in Hodgkin's disease, lymphoma, brain tumors, and renal cell cancer.

More important than charts and graphs and labs and tests and blah blah blah... I simply FEEL better. Now I have the peace of mind that goes with knowing that my liver is not under constant attack by those nasty little freeloaders (HepC virii), and I may have bought myself some longevity. Admittedly, I have one last hurdle to clear (the 18-month follow up, a year from now), but in my mind, this was always the big milestone. Not completing treatment... not clearing the virus... coming back clean at 6 months post treatment.

After all this lengthy medical blather, and charts and whatnot, I aim to keep my promise to post some pix from Montana in my next post. I've just been busy holding my breath for the last week. :-)

Laters!

No, I really haven't dropped off the face of the earth!

2007-06-28T21:30:00.000-07:00

Geez Louise! It's been almost two months since my last post. I swear, it's not because I've gone off to die under a rock or anything... just been a busy summer. At the moment, I'm on a much-needed vacation in one of the most beautiful places on earth: Glacier National Park, Montana. (pictures to follow)

To my blogger buddies, know that you are on my mind, despite my silence. I'm kicking around an idea with Heather (my lovely wife) to start taking this blog in a new direction, so things will probably start to pick up towards the end of summer. I'm also going in for my 6-month labs when I get back, so I'll be posting about that.

Anyhow, I hope you're all well. For those of you still on treatment, or considering it, hang in there, and listen to what your body and intuition are telling you.

More soon...

Okay, so here's what I'm thinking...

2007-05-01T09:53:00.000-07:00

Obviously, it's been a while since my last post. The reason is that I'm not really sure what direction to take the blog, now that I've finished treatment. I originally envisioned it as a treatment diary, but I think at this point that there should be some continuity... and have been encouraged in this by my blog buddies.

I'm a bit conflicted with regard to what I should write about:

I already have a web site dedicated to my artwork, so that wouldn't make much sense here. I've dabbled in the past with blogging about artworld news, but it went nowhere, REAL fast.

I'm a bit of a wonk with strong political views (progressive), but there's enough noise out there that I doubt I'd add anything to the general discourse; besides, Josh Micah Marshall, Firedog Lake and Daily Kos cover things way better than I could, and are sufficiently dedicated to the endeavor that they fact-check what they write... I'd just be spouting opinions, and who wants that?!

This blog started around a specific medical issue (or combination of issues, I suppose), and it wouldn't make sense to shift gears and wander off in a completely different direction.

All of that said, here's what I'm thinking: in addition to occasional updates about my own health (and particularly the HepC follow-up labs), I thought it might be interesting to blog about the state of the American healthcare system, public policy and my own experiences with "the big machine." I'd also include posts about any interesting research I come across, and maybe the state of hemophilia, HIV and HepC care around the world. I would do my best to take a legitimate journalistic approach (ie. fact-checking), but it will undoubtedly still be shaded with my own perspective.

I'm just kicking the idea around for now, and am totally open to feedback or suggestions. Post a comment and let me know what you think.

It figures!

2007-04-11T10:19:00.000-07:00

I get through 48 weeks of treatment that's supposed to give me "flu-like" side effects, with a bit of fatigue and little more. I finish treatment and start feeling really good, and wham! I get the real flu. Ick. I suppose it could be worse... I was only down for a couple of days (I'm currently recuperating), but I still could have just as easily done without it. :-P

I can just hear all the lectures I'm going to get from my well-meaning health care team about how important it is for me to get the flu shot every year. As I've always done before, I'll calmly explain that whenever I get the flu shot, I get the flu, really badly (like out of commission for two weeks), so I prefer to take my chances.

Oh well... into all our lives a little rain must fall.

Editors note to AH Robbins, makers of NyQuil: Your product is great, but it tastes NASTY!!! I mean the daytime formulation is tolerable, but the Cherry nighttime stuff is revolting, and the green stuff is downright abhorrent! What on earth possible reason do you have for torturing the already miserable? I suppose the argument could be made that it discourages alcoholics from gulping it down... but then anybody buying it in large quantities is more likely trying to stock a meth-lab than tie one on. Give us a break, please!

It looked so long at the other end

2007-03-30T08:46:00.000-07:00

Today marks the close of one full year since I started treatment. Looking back, it's gone by faster than I expected. Why is that, anyway?! I mean, have you ever noticed that the perception of a block of time looking forward is generally longer than when looking back... it doesn't even seem to matter how large the block of time is. Then again, maybe it does: the difference in perception expands as the block of time gets larger. But the point remains... look at a week from the front and it seems longer than it appears in retrospect. (The effect is amplified when you're waiting for something)

I think from now on, I'm going to refer to it as the "Temporal Doppler Effect". Remember, you heard it here first. :-)

I've got nothing else today. All is quiet, I'm feeling good, my skin is clear... oh, and I got my tax refund. E-filing rocks!

One minor editorial note: I've started using the "Labels" feature to categorize posts for easier searching. You can use the list at the right if you're looking for posts where I discuss a specific topic area. Categorizing a year worth of posts... now that was entertaining. I'm glad I don't blog daily!

Tats, artwork and post-treatment update

2007-03-24T11:16:00.001-07:00

Well, I guess I sort of promised (and my blogger buddies asked so nicely), so here's the first bit of my artwork I'm showing on this blog. It seems a fitting place to start, since it's the design for the phoenix tattoo I mentioned in a previous post.

I know it's pretty refined for a "sketch", but once I got started, I couldn't stop until I had a good sense of where it was going. If you're wondering, I sketched it in pencil, scanned it, worked up the refined/colored version in Adobe Illustrator, and jpegged it in Photoshop. I seldom get beyond the pencil sketch stage before deciding to either commit an idea to canvas, set it aside for further consideration or chuck it altogether.

Lately, I've been using the computer more and more in my artistic process. It really broke through for me in 2004 when I did my subvertisement show. Up until then, I worked with more traditional media, although not always in the most traditional ways. Maybe I'll post some examples, as I just came across my slide archive under a pile of other stuff in my studio.

Lately, I've been playing around with a "natural media" program called ArtRage. Right now, I'm just trying to get a feel for the tool to see if there's a place for it in my artistic process. Here are two examples of my experiments:

Captain Cook's Resting Place from a photograph taken by my wife while in Hawaii.

Just screwing around with portraiture... Albert Camus seemed as good a subject as any. Maybe there's an existential subtext to my thinking, but I wouldn't waste time looking for it. :-)

I'm also toying with an idea for a new digital series called American Tarot, which uses contemporary imagery to depict symbology used in the 22 Major Arcana to explore how the archetypes expressed in the Tarot are manifest in the modern world. I'm in the research and ideation phase, so I don't have anything to show right now, but I'll keep you posted.

Of course, if you want to see more of my work, swing on over to my personal site and look at the portfolio. I'm actually thinking about adding some new paintings to the Inquiry series. That's a whole different process... very organic, so I'm afraid I don't have any sketches to share.

Obligatory Post-Treatment Content

So I'm still feeling great and my energy is continuing to build... particularly on the "interferon spike days", that is, the three days immediately following my Friday evening shots. I can say with great certainty, I don't miss it in the least!

Last weekend, I visited a Chinese medicine specialist who is also, incidentally, my wife's godmother. I had my first-ever acutonic treatment, and felt wonderful all week. Acutonics is a similar treatment modality to acupuncture, only the needles are replaced by tuning forks and other objects that create sonic vibration, such as prayer bowls. I know it may sound a little new-agey, particularly to anybody firmly invested in Western medicine, but I've found it remarkably effective, even after only one treatment. I'll definitely be going back for more.

I also finally got around to seeing a dermatologist about the psoriasis/dermatitis/whatever??? that has sullied my good looks (wink) for the last 15 years or so. We're doing two weeks of exploratory treatment to establish a firm diagnosis, then we're going to work out a long-term treatment plan. What's amazing is that my face has completely cleared up after two days of using the cream he gave me (desonide) and washing with prescription strength Nizoral shampoo. He said to email him and let him know how it was going after two WEEKS! Needless to say, I'm pleased so far, and find myself forced to rethink my contempt for dermatologists.

The funny part of the derma visit is that the doc is like 5 years younger than me... and called me "Mr. Vacano". I am just SO not prepared for this sort of thing. I've always been the youngest guy in the room, and in my head, I'll always be 14. EEK!

As this may now be the record-holder for my longest post, I'm going to leave it at that for now. More later.

Be well!

Energy still climbing

2007-03-13T19:46:00.000-07:00

It's been over two weeks now, and my energy is still climbing... I guess I really didn't acknowledge how much treatment was wearing on me, because I'm feeling great. My wife was teasing me this weekend that she needs to readjust to the new and improved me, who, rather than sleeping late on weekends and kind of dragging ass for 3-4 days after my shot, wakes up at 9 sharp and says "hey, we've got a whole day in front of us... lets go do stuff!" Even the early savings time clock change didn't throw me off all that much. I'd say that I'm feeling pretty close to 100%.

An amusing tangent that merits comment: Mac OSX was already configured to handle the new date of the time change, while all the Windows users I know (myself included... I use both platforms but vastly prefer Mac) got pounded by the fact that Microsoft was totally unprepared. What a shocker!

Back to my post-treatment experience, I should also mention that the skin on my face seems to be getting clearer and thicker again, the faint bruises on my stomach (from the injections) are clearing up much faster than I expected, and I'd say my mood is even a bit elevated, although that could just be my usual spring pick-up. Lastly, my propensity to spontaneous bleeding (nosebleeds, etc.) seems to be going away and I'm sort of back to where I was before I started treatment.

In all... gotta say, I'm feeling damned good, with no complaints. Hope this gives my "blogging buddies" something to look forward to as they approach the end of treatment!

the toxins are draining...

2007-03-06T08:24:00.000-08:00

Well, it's been a week and a half since my last shot. Since the Pegasys has about a week-long activity arc, one would expect that I would start to feel any differences resulting from its absence beginning around Saturday.

Sure enough, Saturday morning, I snapped awake at about 9 am and thought "hey, I feel pretty good today!" My energy was markedly higher all day, and has been steadily climbing since. Sunday was even better, and yesterday was nearly normal. I can also say with some certainty that I'm sleeping more deeply and waking up less frequently in the middle of the night. The other thing I've noticed is that my skin (particularly on my face) is less dry and sensitive, and seems much less prone to springing spontaneous leaks... I'm not ready to put the styptich pencil away just yet, but I am seeing significant improvement. Lastly, I'm not feeling thirsty all the time.

Throughout the treatment experience, I've commented that I wasn't experiencing sides that were all that significant. While I stand by that, I was also expecting that I would look back after stopping and see more clearly what treatment was really doing to me.

The most significant effects I experienced from the Pegasys were an overall reduction in energy and general tiredness (not so bad I couldn't work), the aforementioned skin problems, some minor digestive issues (leaning more toward things moving too slowly rather than too fast) and a sort of steady, very low level 48-week long headache.

Amusingly (to me anyway) this has typically been my experience of the flu on the rare occasions that I've had it. I've often found that while everybody around me is getting knocked on their asses by the year's active strain, I just kind of drag for a week or so, with maybe one really bad day. The reason I find this amusing is the original title of the blog, which was "48 week flu"... I was told at the beginning of treatment that I would probably feel sort of like I had the flu the whole time I was on treatment. While I refused to acknowledge it when in the thick of things, I can say in retrospect that this did come to pass, to a mild degree.

More to follow soon, but I figured I'd better post an update. Tea, thanks for asking. ;-)

Cheers!

finis.

2007-02-23T22:46:00.000-08:00

My 48th shot came a little late tonight (I was out celebrating a friend's birthday), but it is now in me, and so my treatment draws to a peaceful and positive close. I don't have a whole lot more to say except to express how relieved I am that it's over, and appears to have been successful.

Of course, I would be totally remiss if I didn't express my warmest heartfelt gratitude to all the people who have cheered me on through this process, particularly my fellow bloggers: Jason, uncertain, ample, Hep C Boy, Tea, Liver Logger Chris, Ron and Carol. The list also includes my wife (of course!) and family, my colleagues at work, my circle of friends, my healthcare team, and the good folk on the HepC forum (far too many to name personally, but that doesn't mean I appreciate you any less). To anybody else I've forgotten, my apologies, and my thanks!

I'm going to take a little time to reflect on this experience, and read through my postings, start to finish, and then I'll probably do some sort of post-mortem. After that, it will be time to decide exactly what direction this little journal of mine is going to head next.

Until then, be well.

A thought for my fellow travellers

2007-02-21T14:41:00.000-08:00

It seems like many of my companions on the HepC journey are having a rough go of it lately, in one way or another and in varying degrees. I find a lot of comfort in music, and thought it might be useful to share a song I find particularly useful in getting through the rough patches. It was actually written for a woman in Burma being held as a prisoner of conscience in her own home, but I find it fits for just about any state of duress.

Very few people say it better than Bono and Edge...

And love is not the easy thing
The only baggage that you can bring
Love is not the easy thing
The only baggage you can bring
Is all that you can't leave behind...

And if the darkness is to keep us apart
And if the daylight feels like it's a long way off
And if your glass heart should crack
And for a second you turn back
Oh no, be strong

Oh, oh
Walk on, walk on
What you got, they can't steal it
No, they can't even feel it
Walk on, walk on
Stay safe tonight

You're packing a suitcase for a place none of us has been
A place that has to be believed, to be seen
You could have flown away
A singing bird in an open cage
Who will only fly, only fly, for freedom

Oh, oh
Walk on, walk on
What you got, they can't deny it
Can't sell it, or buy it
Walk on, walk on
You stay safe tonight

And I know it aches
How your heart, it breaks
You can only take so much

Walk on...
Walk on...

Home...
Hard to know what it is, if you never had one
Home...
I can't say where it is, but I know I'm going
Home...
That's where the hurt is...

And I know it aches
And your heart, it breaks
And you can only take so much

Walk on...
(Hooo)

Leave it behind
You got to leave it behind
All that you fashion
All that you make
All that you build
All that you break
All that you measure
All that you feel

All this you can leave behind

All that you reason, (it's only time)
(And I'll never fill up all I find)
All that you sense
All that you scheme
All you dress-up
All that you've seen
All you create
All that you wreck
All that you hate

Still undetectable and one lonely little shot...

2007-02-16T23:18:00.000-08:00

It's Friday night and t-minus 2 is in my belly, leaving one shot left in the fridge for next week. Then that's it. Done. The fat lady's warming up for her aria.

To top it off, I got my PCR back earlier than expected, and as I anticipated, it's still delightfully undetectable. This definitely firms up my resolve that the virus is gone. It also makes me very comfortable with the decision not to continue past 48 weeks, although I'm sure my nurse will ask if I want to. I may regret it six months from now, but I doubt it. My own self-awareness (it used to be popular to call it biofeedback) is telling me that the fight is over and the good guys won.

The amusing thought for the evening is that the one little shot looks so lonely and pathetic, sitting there in the vegetable crisper all by itself. I suppose it's got my factor boxes to keep it company, but they're a whole different breed, and haven't been doing a good job of making the interferon feel welcome anyway. Now the poor little guy is completely outnumbered and awaiting its fate next Friday. Hmmmmm. Pity.

... and then there were 2

2007-02-12T21:15:00.000-08:00

Reaching... wincing... straining... almost there! I can taste victory.

Ok, so I'm exaggerating, but it's still nice to be so close to the finish line (assuming my viral load comes back undetectable). Should I even bother with the whole fraction thing? It wouldn't be my blog, otherwise!!!

1/2 a box, 1/24 of the entire treatment course left. 46 behind me. Wow.

So I'm going to get my viral load drawn this week, along with my other labs. I have no reason to think the news won't come back favorable. I've been feeling good, and everything up to this point has been trending in the direction of a successful effort. I'm not the sort of guy to take a sudden left turn right near the end of a long trek.

That said, it seems the only HepC you'll find around the Vacano house appears with yours truly, below:

Cute little bugger, ain't he?! I think I mentioned him before... he was rummaging around my stocking on Christmas morning, looking for one of those little airline bottles of Bacardi or something.

Actually, he's made by a company called GIANTmicrobes, web site www.giantmicrobes.com. I find having a stuffed HepC sitting on the shelf above my desk, staring at me all day, suits my humor nicely. I think I'll get the HIV one to keep him company.

Come to think of it, I suppose it's time to start thinking about the tattoo(s) I promised myself upon successful completion of treatment. Obviously, I'm not going to rush out and get it/them right away... I'm still going to wait 6 months for the SVR viral load. No sense declaring victory before it's a certainty.

If you're at all interested, the main tat I'm planning is a phoenix on my back (it's a strong symbol for me... not just connected with the HepC, but also the HIV and hemophilia). Of course, being an artist (I have a college degree that says so!), I fully intend to design my own. The other tat, I'm still mulling over: 48 dots arranged in a grid pattern 3 x 8 on each side of my navel... sort of a techno-tribal commemoration of the 48 shots. Since it would be on my belly, the only people who would see it are me and Heather... and anybody I swim or hot-tub with... maybe the guys in the locker room... and eventually the mortician, I suppose. Yes, I'm being cavalier and goofy. Have you not been reading the blog, thus far?

I'm afraid that's all I have on my mind for now. Oh, wait! Spring seems to be returning to Seattle a bit early this year. I went outside this weekend and it was shirtsleeves weather! A very nice relief from the cold from November through January. I hope it keeps up. Seattle has turned me into such a weather wimp! I used to go out in a t-shirt in December, when I lived in Colorado. Maybe I'm just getting older and softer.

Down to 3

2007-02-04T18:28:00.000-08:00

I'm into my last box of Interferon, and have only three shots left as of Friday night. I feel surprisingly indifferent, given that the end is in sight and so close. Don't get me wrong, I'm looking forward to being done (and how!), but it just sort of seems like other aspects of my life are starting to take precedence.

My labs all look good (enzymes getting damned close to normal), I just had an ultrasound and it doesn't look like my liver's changed much (if at all) since my last u/s over a year ago and my intuition about my own state of being is telling me pretty loudly that the virus is still clear, and that I've licked this thing.I suppose there's a chance that the virus might come back, but I prefer to focus on the positive until the negative rears its ugly head. On the off chance that my viral load does come back detectable before the end of treatment, I'll probably wind up extending out to 72 weeks. Obviously, I'd prefer to wrap things up at 48, as planned.

The only other interesting news I have on the health front came from my meeting with my Infectious Disease doc a little over a week ago: the HIV combo I'm on is now available as a single pill, called Atripla. I already had it pretty good with only three pills a night, but this gets even easier!

I'm still pondering the future of the blog after I finish treatment. I'll definitely leave it up as a resource (however valuable) for other people confronting the decision to treat, but I'm not sure how much dedication I have in me to keep adding to it. I guess we'll just have to wait and see.

Final footnote: you might have noticed I changed the title of the blog. I was inspired by my buddy Jason, in the UK, who is also using a song lyric for his blog title. Gold star to anybody who can name the song I pulled my title from... two stars if you can name the band.

6 shots left

2007-01-14T16:19:00.000-08:00

Ho hum. Another mostly uneventful shot down, and I'm 7/8 of the way through treatment... six shots left. I just want it to be over. Not because it's going badly, but because I'm BORED!

Oddly, it does seem like the side effects seem to have picked up a bit here, as I approach the end: I think my energy is a bit lower, and I've been prone to evening headaches, particularly on Tuesdays and Wednesdays, for about the last three or four weeks. They're not the blinding migraines that other bloggers have described (thankfully!), but I don't normally get headaches... period. Also, my sleep schedule is all turned around, and stays so despite my efforts to straighten it out. Admittedly, I've always been a nighthawk, so maybe it's nothing. Lastly, still battling the dry skin/psoriasis on my face, and the cracks at the edges of my mouth have gotten to the mild annoyance stage.

Far be it from me to complain! I've still had it better than a lot of people on this course of treatment. The fact remains... I'm ready for it to be over.

On a totally non-related note, the Bears knocked the Seahawks out of the playoffs today. I've got to give it to Seattle: they finally started stepping up and looked like they actually belonged in the playoffs. But between a few critical mistakes (Matt, your left hand seems to be in worse shape than you're letting on!) and the fact that the Bears just played a tighter game... Chicago deserved the win. Oddly, I'm a little relieved... now I don't have a stake in the championship games or the Superbowl, although if pressed, I'd like to see the Saints take it. It'll probably be San Diego, though.

UPDATE: Well, so much for my Football prognostications... the Pats just took down the Chargers. Good on New England! Should be a good battle with the Colts for the AFC title.

Oh, and on the subject of sports: WTF?!!! Beckham coming across the pond to play for a relatively unknown team in a sport Americans don't properly appreciate. What is this world coming to?

January reflection

2007-01-04T16:36:00.000-08:00

This time of year, I tend to get rather reflective... probably because of the string of holidays starting with Thanksgiving and culminating with New Year's. I spend a lot of time thinking about where I've been and where I'm headed.

2007 seems particularly poignant to me, somehow, for a multitude of reasons. For the most part, I think it comes down to the fact that, this June, I will mark 20 years since testing positive for HIV. In all likelihood, I've been carrying my HepC around for even longer... maybe even since the first transfusion I ever received. I'm not entirely sure I even imagined being alive this long... sometimes I wonder how I've done it (aside from my ludicrous determination to keep going), when so many around me have fallen. They were every bit as strong, corageous and deserving as I... in many cases, moreso. To tell the truth, I don't think of myself as being particularly strong or corageous. And what strength I have, I've drawn from those around me. This leads to the point of today's post... to express my gratitude.

To those of you that can read this, whether you're part of my "inner circle" who I speak to at least once a week or more frequently, or part of my more expansive circle of friends who I trade the occasional email or blog note with... or with whom I share the occasional chat or phone call to get caught up... I know I don't express it nearly enough, but I'm genuinely grateful to have each and every one of you as part of my life. I draw a little bit of my daily joy and strength and will to live fully from each of you... and when it's all combined, it becomes a force to be reckoned with!

For those that can't read this, because you've already shrugged this mortal coil, I hope that wherever you are, you know a small part of you lives on in me, and will always be a part of who I am. Dad, Maynard, Nell, Joey, Patrick, Richard, Kevin, Brent, Don Paul, Brian, Bret, Linda, Art, Josh, Dirk... the list goes... thank you. Rather than regret the fact that I didn't get to say a proper "goodbye" to most, if not all of you, I will instead regret that I won't have another opportunity to say "hello." More importantly, I will focus on remembering and cherishing the "hellos" I did get to share with you, the times that followed and the things you taught me.

Okay... enough maudlin rambling. Time to go take on another year!

... and then there were 8

2006-12-30T13:49:00.000-08:00

8 shots left, as of last night; 5/6 of the way through treatment; 2 more boxes to go. Wow! It seems so close.

So I've been stalling on looking at the actual date when I take my last shot, but my will has finally broken and I peeked: February 23. Strange... I think that was my mom & dad's wedding anniversary.

Speaking of will (well, technically not) I've decided this getting healthy thing is something I rather enjoy, and so I've quit smoking. This is against the advice I've received from several sources... apparently, there's concern that the irritability that comes with quitting smoking can amplify the negative psychological side effects of the HepC treatment, so it's better to wait until treatment is done to consider quitting. Since I'm showing no signs of depression or whatnot, I kind of figure I'm in the clear. Moreover, I'm using Allen Carr's EasyWay method, which truly makes quitting a piece of cake, if not downright enjoyable. The basic strategy is to reframe your thinking and undo the brainwashing that fosters the habit. I've read his book The Easy Way to Stop Smoking, and while it's a little bit didactic, it also makes complete sense. It's also a quick, easy read... sometimes quite funny and clever. Anyhow, despite the warnings, I'm across the threshold now, and won't be turning back. Since I'm not feeling irritable or depressed, I'm not terribly worried.

Oh yes, the holidays! Thanks for asking. Very pleasant series of small gatherings, lots of food, good conversation, etc. I really enjoyed this year's festivities... although I am prompted to wonder why people get so bunged this time of year. I saw some of the most hideously rude and obnoxious behaviour while I was out and about preparing for the holidays. That, coupled with the so-called "war on Christmas" strikes me as terribly ironic: it appears to me that the people who bitch loudest about the "war on Christmas" are the same people doing the most to completely undermine the spirit of the holiday itself. (yeah, that includes you too, Bill-O!) Most people in the Northern and Western Hemispheres (not to mention Australia, etc.) recognize some sort of holiday at this time of year (Christmas, Chanukah, Kwanzaa, Wassail, the Solstice, etc.) What is so damned wrong with people that the thought of sharing a season of joy and reflection gets them all bent out of shape? The vast majority of Christmas traditions are derived from the practices of other religions, anyway... so in my estimation, Christians have the least cause to lay claim to this time of year. Okay, enough ranting... just had to get that out of my system.

Obviously, tomorrow is New Year's Eve. I'm genuinely looking forward to 2007, and I wish you all peace and prosperity in the coming year.

The Night the Lights Went Out in Seattle

2006-12-18T08:44:00.000-08:00

Ten shots left! No fractions in this post, folks, but it's still a comforting number... after next week, I'm down to single-digits. I have nothing interesting to talk about on the treatment front (ie. still no sides), knock on wood.

The amusing anecdote I have for this weeks post has more to do with the weather (has it really come to this?!). Last Thursday, a big storm blew into Seattle which coupled monsoon rains all day Thursday followed by high winds Thursday night (up to 100 mile per hour gusts in some areas). For those that have never been to Seattle, there are a LOT of trees here... which translates to downed power lines in weather like this. This particular storm took out the juice for over half a million homes in the greater Seattle area alone (as well as gas stations, banks, etc.). We were among the lucky ones who got our power back on Friday night... many homes are still dark, here on Monday.

The power outage prompted me a bit of concern on two fronts. First, Pegasys is supposed to be stored cold (as is my clotting factor), and a fridge without power has a nasty tendency to NOT maintain its usual nice cool temperature. Second, I didn't particularly relish the idea of doing my shot by candle light. Thankfully, our power came back on, so I dodged both bullets.

Nothing like a good storm to remind us how dependent we are on the power grid. Props to the technicians from Seattle City Light and PSE who have been out there around the clock clearing branches and getting power restored. Your efforts are noted and appreciated, guys!

Big-ass milestone, mathematically speaking

2006-12-03T14:37:00.000-08:00

Shot 36 is in my system as of Friday evening. 3/4 of the way through. 12 shots (3 boxes) left to go. Woo Hoo!!! (mathematically interesting to me because of all the base-3 and base-4 numbers involved... interesting patterns and symmetry). I think I mentioned early on that I pay attention to numbers, particularly when measuring a drawn-out process like this... Shot 36 is one I've definitely been looking forward to.

I've finally hit a meaningful side, too. Well, I suppose it's all in how you look at it... I'm still not getting any of the body aches, headaches or fatigue, and my hair and mood seem to be holding steady. However, between the treatment and the cold weather we've been having here in Seattle, my face has gotten annoyingly dry, flaky and prone to springing leaks (blood) at random, regardless of the battery of moisturizers and topical medications I've been throwing at it. I would love to personally thank the person who invented the styptich pencil! (I use it frequently to stop the random leaks, which are very similar to shaving nicks)

Also, the corners of my mouth have gotten particularly dry and prone to cracking and bleeding... and the area has developed small patches of yellowish flaky skin. It's pretty gross. My significant other assures me it's hardly noticeable, but it drives me nuts... vanity is definitely one of my weaknesses.

I guess I don't have too much cause to bitch, though. Most of my blogging and hepC forum buddies are having a much rougher go of it than I am, and are at an earlier stage in the treatment calendar. My heart definitely goes out to them... I wish I could pick up and carry some of the burden since mine seems so light.

Speaking of fellow bloggers, I had a nice chat with my man Jason in the UK (shouts out to ya, Jae) this morning. Wish I could make it to the UK for the get-together they're arranging on the support forum, but ah well... maybe another time!

Anyhow, that's about all I have to say for today. Gotta go get my monthly labs drawn tomorrow... whoopee! Oh well, at least my holiday shopping is done and I can spend the next couple of weeks getting into the spirit.

Ciao for now!

"Lucky" 13 left

2006-11-25T11:04:00.000-08:00

Wow, it's just ticking down! I did -14 last night (yes, we're counting backwards now), and realized a certain symmetry... if you dig back, I did a rather lengthy post at 13 shots in, about forgetting to pick up my meds and having to hit the after-hours pharmacy. Anyway, I don't have much of anything to write with respect to treatment, side effects, etc. except that I've recently become aware of a dull steady headache and a mild fatigue. It's been going on for a couple of weeks, now that I stop to think about it. Could be treatment... could just be the change of seasons, to which I've always been pretty sensitive. *shrug*

So my last post set off a rather lengthy thread which turned toward some interesting news reported last week, and I figured I'd address it here, along with taking the opportunity to do a bit of "hemophilia 101". If you want a really comprehensive crash course in the various bleeding disorders, the National Hemophilia Foundation web site does a good job, particularly of explaining Hemophilia A (FVIII), Hemophilia B (FIX) and VonWillebrand's Disease.

To give some perspective: Hemophilia A and B affect a combined total of approximately 20,000 Americans (roughly 1 in 5000). The NIH put forth the estimate several years ago that there may be as many as 2 million Americans affected by Von Willebrand's disease (a little less than 1%), but this number is hard to pin down, since VWD is poorly recognized or even known, and awareness is so low, that diagnoses are often missed.

For purposes of this discussion, I'll primarily be referring to Factor VIII deficiency, which I've been living with for all of my 34+ years, and thus understand best. There are actually 13 proteins in Human blood which work in conjunction (a sequence called the "clotting cascade" - see graphic below) to form a Fibrin clot. This is the mechanism that controls internal bleeding (typically into joint cavities or muscles); cuts and scrapes involve a different clotting process (scab formation, etc.), and generally affect hemophiliacs in a fashion similar to anybody else.

Sidebar tip: Wanna' annoy a hemophiliac? Just ask them if having hemophilia means they bleed to death if they get cut. It's nothing personal... we've just gotten tired of answering that question over and over.

Ok, so back to the "cascade": last week, the Baltimore Sun ran a story (which spread to other papers around the country) about how the US Military is treating combat trauma using Factor VII. Note from the graphic that FVII comes into the cascade from a different "direction" than the other clotting factors. This is a graphical representation of how FVII acts as a sort of supporting protein to the process, but behaves differently than the other proteins and is not integral to the cascade itself. Its unique characteristics and action pathway explain why doctors are exploring its use to treat combat injuries.

In hemophilia care, Factor VII is used to treat individuals who are specifically FVII deficient (very rare!) and Hemophilia A & B patients who have developed an inhibitor. Essentially, an inhibitor is a condition where the patient's immune system is activated against the factor injections, thereby rendering them useless to treat bleeding episodes and putting the patient in a VERY precarious position. Factor VII is administered as a substitute in this situation, and while it's not the most effective way to get to a clot, it works sufficiently well to prevent the patient from having to suffer through a bleeding episode without any treatment whatsoever.

Implications of Giving FVII to Troops

I have some seriously mixed feelings about this application of FVII. Let me be clear from the outset that I believe our troops should have the best medical attention available, regardless of my feelings about this poorly justified, poorly planned, poorly executed, and poorly managed adventure in Iraq staged by and for a bunch of greedy old jackasses who can't differentiate sending young men and women into peril from your average video game.

Administration of FVII is a very complicated issue, however. On one hand, there is a risk of causing stroke or other potentially fatal conditions when clotting factor is given to a non-hemophiliac patient. (The article covers this in some detail, so I won't elaborate further) Moreover, this product is very expensive (upwards of $6000 per dose) and not produced in massive quantity. Certainly, Novo Nordisk (the Danish pharmaceutical that produces Novo Seven) may be able to ramp up their production, but I worry about availability to the hemophilia community, that has an established (as opposed to an experimental) need for this product. In all fairness, Novo is getting clobbered in hemophilia treatment by a competitor's product, and may simply be looking for another market channel to distribute its goods... it seems to me to be drifting dangerously close to war profiteering, however.

My last concern is that this may be embraced as the standard of care and implemented in trauma centers throughout the US (and maybe the developed world), which would only amplify the problems mentioned above.

On the other hand (as it was pointed out to me by a close friend), this may be a very good thing for the hemophilia community, in that it will raise awareness of what our treatments cost, and more ERs and trauma centers will know how to treat a hemophiliac when he (or very rarely she) shows up in need of treatment. Also, given the new Congress and the promises of aggressive oversight, we might just see a meaningful dialog begin about how expensive clotting factor therapies are, and Congress might just figure out an effective way to curb the runaway profits of big pharma and ensure access to treatment (something we're all perpetually worried about)... at least in this one little area of medicine. Then again, the pharmaceutical lobby is one of the most powerful in Washington, so I'm skeptical.

So we can only sit back and wait for this to unfold.

T-minus 15

2006-11-12T12:42:00.000-08:00

Very little to report on the HepC front, except that I did shot 33 on Friday and have 15 left. What is that... like 3 1/2 months? Piece of cake.

Some fellow hep bloggers and I have been talking about our gear and the variations in packaging and whatnot. I guess it was sort of instigated by my posting on the HepC Forum about bevel up vs. bevel down, and the fact that I posted a picture of my syringe and needle combo. (See previous post in this blog)

This prompted my buddy JPT in the UK to post images of his hemophilia shooting gear and HIV cocktail, so I figured I'd follow suit, just to help elucidate some more of the variances in medications and packaging. Besides, very few people have any idea what hemophilia treatment entails (in wealthy industrialized nations, anyway). I cringe whenever I think about the state of care for people with hemophilia elsewhere in the world.

HepC Treatment

I've already shown what the syringe/needle and pills look like in my previous post. Here's the box inside of the box that I get whenever I pick up my 4-pack of shots:

In addition to this package, I get 4 needles with shield guards and 4 alcohol swabs (one fellow blogger gets 5 for some reason). I find some of the labelling on this package terribly amusing... with Halloween just recently passed, I'm surprised it doesn't say "fun size" anywhere!

Hemophilia Gear

This is my hemophilia gear, right out of the package. The "Factor VIII Hobby Kit" I get also contains a butterfly needle (which I toss, because it's like trying to hit a vein with a rusty nail!) two alcohol swabs and a little instruction booklet. Again, terribly amusing: I don't think I've ever read the instructions, and after 20+ years of doing my own shots, I'm willing to bet I have a pretty good handle on the procedure. Either that, or I've been doing it completely wrong this whole time!

I use one vial twice a week for prophylaxis, two vials for a typical bleed. That nasty elbow bleed I had several weeks back burned through a total of eleven vials! Now that I think of it, I was transitioning between 1000 IU vials and 2000 IU vials (as shown), so it was actually more like seven. It was still a boatload of factor!

The vial (upper left) contains the freeze-dried factor concentrate. The little doo-dad on the upper right is the transfer kit, which is removed from the packaging and attached to the top of the vial. The parts of the syringe are screwed together, then the syringe hooks to the transfer kid... the water from the syringe is injected into the vial to reconstitute the factor, then drawn back down into the syringe. Very spiffy system, actually... beats the hell out of the old days when we had two vials, with double-ended needles, then another needle to draw the reconstituted factor into the syringe... believe me, it was a drag (especially during a particularly bad bleed).

Here's the "after" photo with some other goodies. This is an empty vial with the transfer kit still attached. The blue thing is my handy-dandy quick release tourniquet, which makes one-handed tightening and removal a snap (literally!). I included the two types of butterfly needles I prefer... the one on the left (orange wings) is a Terumo 25 gague... laser cut needle, goes in like a hot knife through butter. Most of the time I don't even feel it. The butterfly on the right is also really cool in that it has this lever on top which, when flipped, blunts the needle (while still in the vein) so there's no chance of anybody getting stuck after it's been contaminated with all the little nasties running wild through my system.

HIV Cocktail

Prepare to be underwhelmed... this has got to be the smallest, easiest HIV cocktail available today. Yeah, it's just three pills before bed, daily. Clockwise from the top, they are Efavirenz (a/k/a Sustiva), which gives me really loopy vivid dreams and is singly responsible for at least two screenplay ideas, Tenofovir, and Lamivudine (a/k/a Epivir or 3TC). Really, three pills a day... that's it! (Not everybody responds as well to this combo as I do, which is kind of a bummer)

That about covers what my treatment gear looks like. I know in my last post, I promised to post some charts on how my labs are doing... I'll get around to it, I'm sure. For now, I'm bailing to go get lunch with a friend, get a haircut and maybe do a titch of holiday shopping.

Cheers!

2/3 through... what a lovely place to be!

2006-11-04T12:34:00.000-08:00

Knocked down shot 32 last night, putting me at the 2/3 mark, which makes me very happy indeed. The number of shots I have left now constitute half of those I've already done. Still feeling fine, with no significant sides. Labs are all cool, and my general numbers (particularly liver enzymes) are trending toward normal... AST, ALT and Bilirubin are all lower than I've seen them in years! I'll snag some graphs off my online chart and publish them in my next post.

For now, however, I thought I'd post what (one type of) treatment looks like, for those who aren't in the thick of HepC. This was inspired by a conversation we're having about needle direction on the HepC Forum.

This is what the Pegasys syringe looks like, with needle attached, right before a shot. Interferon shots are done once a week... in my case, on Friday evenings.

And this is one day's dose of Ribavirin (which I don't take anymore, but had a few leftovers laying around). It's usually broken up into 3 pills in the morning and 3 before bed, at a roughly 12 hour interval.

So that's what treatment looks like. (Although the Peg-intron redipens look a bit different).

Laters!

Minor editorial note

2006-10-26T22:30:00.000-07:00

Yeah, I've changed the look of the blog... I was starting to tire of the old TicTac design. Besides, I upgraded to the new Blogger beta and wanted to play with the features a little bit. So far, I'm impressed... seems like they've worked a lot of bugs out of the old system.

Nothing worth writing about on the hepC front... it's steady as she goes.

Laters!

18 weeks to go

2006-10-23T10:32:00.000-07:00

Well, I'm 3/5 of the way through, and rapidly driving toward the 2/3 milestone, which is keeping me in a very good mood. I'm also still walking on a cloud of delight about my most recent labs.

I'm counting in terms of the 48 week treatment that we assumed when I started. It seems there's quite a bit of talk among researchers and clinicians that extending treatment out to 72 weeks could improve the chances of SVR (sustained viral response... the goal). I have some reservations about this because I think the research that's been published is a little bit sloppy in its assessment of the data, but I suppose there could be some validity. Obviously, I'm also not crazy about the prospect of tacking another 24 weeks onto my course, particularly this close to the end. I talked to my Nurse Practitioner about it (after we shared our delight at my labs), and was relieved to hear that my treatment team isn't ready to jump on the bandwagon without gathering more information first. We pretty much agreed to revisit the issue when I get closer to the end of the 48 weeks.

Right now, my inclination is to roll the dice and stop at the end of the 48. I'm feeling confident about my prospects of success at this point, and am admittedly anxious to give my body a break from the drugs, even though the sides haven't been all that bad.

The way I see it, even if I relapse, it will be sometime mid to late next year, right around the time the newer, more effective and easier drugs are expected to be coming on the market. Bearing this in mind, I would definitely rather take a break and do 12 weeks of salvage therapy if needed rather than trudge through 6 more months.

In the meantime, I aim to keep an eye on the research and "treatment buzz"... maybe I'll encounter a compelling argument that will change my mind. I kind of doubt it, though. Extending treatment with the existing drugs seems to me to be a step backward in thinking about how to approach this virus.

On to more benign topics, as always, the crisp beautiful days of autumn in Seattle have (far too soon!) given way to misty mornings and drizzly days punctuated by sunshine without heat. While still beautiful, I prefer the dry days of autumn. Amusingly, a transformer in our neighborhood blew on Thursday evening and we were without power for 11 hours. It was a nice excuse to fire up the gas lamps and throw a log in the fireplace. Very cosy and romantic... although being the computer geek that I am, it was of course a tad frustrating to not have my email or web.

Ahhhh... October in the Northwest. ;-)

A WEEK TO REMEMBER

2006-10-13T21:18:00.000-07:00

How could I not post today, it being Friday the 13th and all? Well, I suppose I might have passed the usual "just did shot 29 and I'm still bored", except for two notable pieces of news:

My company released version 4.0 of our flagship software product yesterday, which has us all feeling really good (and more than a bit relieved!!!). We've been working long and hard on this release... the product is finally realizing maturity (and some market traction), so this is something of a watershed moment.

More relevant to the context of this blog, I got the rest of my week 26 labs back (about an hour ago, so I'm still absorbing the news contained therein). Should I just stop holding out on you and cut to the chase already?!

I'M *&^$%$#ING UNDETECTABLE!!!

The feeling is indescribable. I felt confident all along that I would get here... and now, that confidence has been validated. My belief that I can beat this thing has been massively reinforced, and I'm flattened with joy, hope, gratitude and determination.

At the moment, I'm listening to Quadrophenia at an annoyingly high volume. If you've never heard it, or haven't pulled it out in a while, it's worth a spin. Definitely one of the best offerings from Pete, Roger and the boys!

Now all I have to do is stay undetectable for 2 years. I'm past the hard part.

One other effect of this news: my 'treatment ennui' has vanished in one single bold stroke. Just put shot 29 in my belly, and am looking down the road at 19 more weeks thinking "Piece of Cake!!!"

So that's where I'm at. For anybody else out there dealing with this virus at whatever level and in whatever your chosen course of treatment (or not)... hang in there! Sometimes you have to walk the coals to remember that life is pretty damned good.

Shot 28, and Autumn sets in

2006-10-07T15:25:00.000-07:00

I did shot 28 last night and have little to report, except to say that I'm heartened to be well over the half-way point and only looking down the road at 20 more shots (assuming we stop at 48). It's another milestone of sorts, I guess. I have to admit that my interest in the whole endeavour is waning, and I'm very much looking forward to being done, succeed or fail.

Since I don't have much to write about with respect to treatment, I thought I'd observe that Autumn is setting in here in the Emerald City, replacing the lush greens with golds and rich browns. I've always loved this time of year... there's a certain snap in the air that doesn't occur any other time in the year, and the leaves on the ground and dropping temperature stir a nostalgia in me for those first several weeks of school when you're starting a new grade, getting back together with friends and everything somehow seems to take on a refreshed interest. It's that wonderful time that bridges the long hot, boring days of late summer to the short, chilly days of winter. I definitely prefer the equinox seasons to the solstice seasons... probably has something to do with my mercurial Gemini nature.

Don't get me wrong... I find a lot to love about the unique character of all seasons. But Autumn has always been special to me... it conjures sentiments of curling up on a Sunday morning with a news paper or good book and a cup of cinnamon apple tea. Or taking a walk out in the crisp cool afternoon, leaves crackling under my feet. Or even the sublime simplicity found in a bowl of hot soup. The light quality is also different... not so harsh and bright like the summer, nor the spirit-crushing gray of winter. It's warm like the light cast by a crackling fire... bathing everything in its golden kisses.

Okay, I wax poetic... maybe I should stop here for now.

Snapped awake at 6 am... might as well blog

2006-09-29T07:48:00.000-07:00

Well... tonight's shot 27. I'm happy to have crested the half-way point of treatment (I hope) and find myself surfing down the backside. 21 weeks left doesn't seem all that arduous, although I will admit that I was a bit startled two days ago to be washed over by a feeling of "I just want to quit now." I didn't have any particular reason... it was totally irrational. If you've been following the blog, sides have been minimal to non-existent, and I'm optimistic about the outcome. I think it was just a matter of me being so bored with treatment and tired of the routine that the lazy part of my psyche (that has caused me to walk away from things that no longer interest me several times in the past) decided to kick in and speak up.

I should clarify something about my particular case... you might have noticed I hedged above about being over half-way through treatment. This is because it's not an absolute certainty that I'm doing 48 weeks firm. Given my HIV coinfection, and the fact that I'm on Pegasys only (alert readers will recall that I had to drop the Ribavirin), we may push the full course of my treatment out a little longer. It's just kind of up in the air at this point. By the same token, I went to get labs drawn on Wednesday, and sweet-talked my nurse into including a viral load (with HMOs, sometimes it can be difficult to get expensive tests like PCR). It wasn't too hard to convince her, given that the standard routine is to do a HepC quant at week 24. The reason I bring this up is that the result might provide a clearer picture of whether I'm in for 48 weeks or if we're going to drag things out. Anyhow, there's no good reason to think that I won't be finished at shot 48... for the moment at least.

I also want to take a moment to discuss side effects, since some do appear to be kicking in, albeit mildly. First of all, my sleep routine, in general, is kind of wonky. I haven't experienced any serious staring-at-the-ceiling insomnia, but the pattern seems to be 6 hours or so of sleep at night, and then a 1-2 hour nap in the evenings. I've actually been funny about sleep all my life, so it could just be my own screwwiness.

I also generally feel a little less than 100% all the time. It's a lot like when I was on protease inhibitors for my HIV. Just kind of a general energy ebb. I'm expecting to feel a burst after I stop treatment... which may be part of why I got hit by that urge to quit. I'm tired of feeling tired.

Lastly (and this one bugs me because I'm a bit vain), I've noticed more and more frequent appearance of my hair (in growing quantity, no less) in the shower drain and on my brush. To be clear, I'm not going bald by any stretch of the imagination... I started with incredibly thick hair to begin with. But seeing the little clogs of hair, which I hadn't seen that much of before, is... unnerving.

Obviously, I have little to complain about... I'm well aware that it could be much worse. That said, it's time to don my optimistic hat and go start my Friday.

Cheers!

Treading Water...

2006-09-15T07:25:00.000-07:00

Now I start to fully understand some of what I've read and heard from other heppers on treatment... that about midway through, the whole gig starts to feel like a long tedious slog. Tonight is shot 25, so I've crested the halfway point. I don't get my labs drawn until next week. Everything seems to be steady as she goes... about all I can report is that my skin is still dry, and I'm starting to notice some minor traces of my salt & pepper coif in the shower drain, but nothing major. My wife says my hair is so thick that I could afford to lose some anyway.

Speaking of the missus... some proud news on the hemophilia front: after the elbow bleed a couple weeks ago, we decided it would be wise for her to learn how to do my infusions for those times when I'm incapacitated (or just in so much pain I can't focus). She got her training from my treatment nurse on Tuesday, and did her first infusion on me last night. She's a pro. Got the needle in without so much as a squeak. I tried hard to keep my mouth shut while she was shooting, but we hemos all have a pretty specific way we like our infusions done, and we tend to kibbitz whenever anybody does it differently. Anyhow, we agreed she'd do my prophy once a month to keep her skills sharp... and this way, maybe the next time I have a serious bleed, it won't be quite such an ordeal. Then again, bad bleeds suck, no matter how you slice them!

Sorry for the quiet

2006-08-31T20:33:00.000-07:00

Hey there! Week 23 and all is well. Labs are stabilizing nicely, side effects still haven't reared their ugly head, and I seem to be chugging along through treatment just fine. In fact my nurse called the other day to give me my latest results, and said everything was looking so good that they were going to give me the rest of the month off (from needle-sticks, not treatment).

Main reason I haven't been posting is that I've been swamped with work (juggling two jobs the last 8 weeks... yikes!) and really haven't had all that much to say relevant to my Hep C experience... although I suppose the fact that I've been able to run at a more elevated pace than normal when I'm supposed to be feeling like hell all the time says something about how I'm doing.

The one kind of odd thing maybe worth mentioning pertains more to my hemophilia than Hep C, but may be related to the fact that I'm on treatment. Two days ago, I had my first "break-through" bleed. This is a bleeding episode that occurs while on prophylaxis, which shouldn't occur because my factor levels are kept up, but does anyway... thus the term break-through. This bleed was remarkable to me for a few reasons:

It came on like a firestorm... maybe 15 minutes from my first noticing a problem to my elbow being in so much pain I could barely see straight. This is unusual for me. Bleeds normally take much longer to develop.

The severity: my elbow was locked in position, and hurt like hell. One of the worst bleeds I've ever had. I admit that prophylaxis has probably caused me to forget a bit about how bad bleeds can be, but this one was a doozie!

I had to shove a truckload of factor at it to get it under control. All tolled, I've burned through 9000 units (maybe being overly cautious, but I wanted to nail this thing ASAP). I normally treat with 2000 units... 4000 if it's a bad bleed.

The slow recovery: in the past, even bad bleeds have cleared up within 24-36 hours after treatment. My elbow is doing a lot better, but I still have limited range of motion, a bit of swelling, and a touch of dull achiness.

I must admit that I'm a little nervous that my Hep C treatment has some degree of counteractive effect to my prophylaxis, but then again, this is the first serious bleed I've had on prophy, even with 23 weeks of treatment under my belt. It's probably much more likely that I had a very slow drip bleed going which I busted wide open on Tuesday morning. Regardless, it kinda sucked, and is something I've agreed with myself not to do again.

Adios for now!

Positive treatment news

2006-08-04T13:17:00.000-07:00

I've been part of a few discussions the last few days regarding new HepC treatment options that are in the "investigational pipeline". Two that are of particular interest to me are Viramidine and VX-950. Both look very promising in terms of results, as well as alleviating some of the difficulties associated with current treatment regimens (particularly the side effects and the time commitment). VX-950 (a protease inhibitor) is particularly exciting, in that the FDA has granted it "fast-track" status, meaning that if it clears phase 3 trials successfully, it will likely be publicly available by the end of next year.

You might be asking yourself why I care about pipeline therapies when I'm currently on treatment. The answer is that there is a possibility that my current round of treatment will not work (ie. I might not clear the virus), so it's nice to know that some compelling alternatives are in the bullpen, warming up. Don't get me wrong... I'm still feeling optimistic about my current round of treatment. With a strong fall-back position, though, my likelihood of eventual success is looking really good... as it is for many others affected by HepC.

Sometimes I can get rather cynical about health care, and even openly hostile toward large corporations... particularly pharmaceutical companies. This type of news gets me to thinking, though. Certainly, these companies are looking to make a buck, but there's another side to consider: there are many people out there (scientists, researchers, entrepreneurs and investors) who, regardless of their financial motivations, are working dilligently to keep me walking around this wet pebble at the ass-end of the universe for as long as possible... maybe even a "full" lifetime. It's a gratifying thought, even if it is a bit egocentric and delusional.

Ho hum...

2006-07-31T09:11:00.000-07:00

There's a lot of jargon that has evolved around HepC treatment, such as "riba rage" (the short fuse, touchy mood associated with Ribavirin/Interferon) and "riba fog" (the fogginess of the brain that comes with Ribavirin). I'm going to offer my own term for inclusion in the lexicon: "treatment ennui." It's essentially the boredom that sets in around midway through treatment when everything is going okay and you're just counting the days until the next shot. I've seen other bloggers mention similar phenomena in their own experience... where treatment starts to feel like a long, tiresome slog. That's where I'm at now. Friday was shot #18, and while everything is looking pretty promising and I'm thankful that my labs have settled down, I'm BORED OUT OF MY SKULL. I actually think I might miss treatment when it's all over and done with. Then again, I probably won't. And I certainly won't miss the little freeloading bastards chewing away at my liver!

Thought for the day

2006-07-19T13:52:00.000-07:00

It occurs to me that I've spent most of my time in this little journaling endeavor talking about lab results and what they may or may not mean. I think this is largely because the labs are the focal point of my discussions with my healthcare providers, which in turn has caused me to spend a lot of time thinking and talking about the metrics, rather than the experience. My original intent when I started was to give as broad a view of my experience with treatment as possible.

In an effort to refocus on that goal going forward, I'm going to try to talk more about the actual experience of treatment... not necessarily instead of the clinical aspects but in addition to them.

For the moment, about all I have to say is that I feel really good physically, and have since I started, except for the mild aches early on and the "riba fog" I mentioned in previous posts. My sleep patterns are relatively normal (for me, anyway), although I've had the rare late night staring at the ceiling (which I attribute to work stress more than anything else). Having read and heard about many other people's experiences on Hep C therapy, I'm clearly one of the lucky ones in this respect.

Even my mood is good, and I'm the same usual unflappable optimist I've always been. I have noticed that my threshhold of tolerance for bullshit and stupidity has dropped, and that I'm a bit more aggressive in how I express my opinions (particularly the political), but I'm not feeling anything that even vaguely resembles depression or rage. At most, one might say I'm getting loosely aquainted with my "inner assh*le". Again, I realize I'm lucky in this respect... although this experience is simply reinforcing my strongly-held belief that the state of mind you have when approaching any situation plays a pivotal role in determining that situation's outcome. Said more simply, I genuinely believe that I am CHOOSING to feel good during treatment. It's really a very empowering way to approach the experience of living, in all of its wonderful facets.

Marching along with good news

2006-07-14T16:38:00.000-07:00

Okay, so the long awaited viral load count is back. As my nurse said, it's good but not great news. I started treatment with a baseline viral load of 450,000, and as of week 12's tests, I'm down to 100,000. It's not the two log drop I was hoping for (maybe a little unrealistic given that I'm doing monotherapy), but it's a very positive indicator that I'm responding to treatment and might just shake this thing! More to the point, given my circumstances, they're not going to pull me off of treatment like they would have if I had gotten the same results on combotherapy.

Oddly, my liver enzymes are still bouncing around on the high side, and we're not really sure what that means, but it doesn't seem to be major cause for concern.

More good news, as far as I'm concerned, is that I've been put on a 3-month interval for lab tests, which is a nice break. As of today's labs, my Lactate is back down into the normal range (woo hoo!). Haven't seen the rest of today's results, but I'm betting they're fine.

Lastly, tonight is shot 16... putting me 1/3 of the way through the 48 weeks! I'm feeling great, and doing well, so all in all, it's a very good day.

As I hinted, the viral load was a little disappointing, but when you live with a chronic condition (or several, as I do), you learn to take your good news wherever you can get it!

Reduced to nuisance level

2006-06-28T10:43:00.000-07:00

Well, I got most of my labs back (not the ones I'm most eager to see, like viral load), and things all look pretty good, although still kind of funky. At this point, the docs aren't terribly concerned, and have given me a 3 week reprieve from blood tests.

Now here's the reason for the title of this entry: sometimes I get forgetful about my medical conditions and need to treat... for example, I once flew to the Netherlands, and forgot to pack my clotting factor! My mother FedEx'ed it, so it was there the day after I arrived. The point of the story is that I get into the routine of chronic conditions, and sometimes am not as vigilant as I need to be. I had one of those moments this weekend:

I take my interferon shot on Friday evenings. If you've been following the blog, you know that last Friday was shot 13, and that Pegasys comes in 4-packs (so I was due to get the prescription refilled). Well, I remembered to order the prescription... but completely forgot to pick it up until late Saturday night, well after the pharmacy was closed. Thankfully, I was able to reach the after-hours pharmacist and drive into town to pick it up that night. My shot schedule was only thrown off by a day, but I hate when I make stupid absent-minded mistakes like that! And to top it off, I managed to give myself another bruise at the injection site. I think I shall fondly remember this shot specifically as "lucky 13".

And on it goes...

First major milestone

2006-06-18T12:12:00.000-07:00

Shot 12 is done, as of Friday night, putting me at 1/4 of the way through treatment. I've been looking forward to this... I can honestly say, it's gone by faster than I expected. More importantly than my fascination with numbers and fractions and whatnot, we're at the point of taking the big barrage of labs, including viral load and liver panel. These will give us some idea of how well the treatment is doing at eradicating the virus.

Normally, if the docs don't see a 2 log drop (factor of 100) by week 12, they'll pull the plug on treatment, because it's not likely to succeed. My baseline was 200,000 (correction: 450,000), so I'd have to be down in the low thousands or better to consider a it a 2 log drop. In talking it over with my nurse last week, she said that since I was kind of a special case (ribavirin problems and such), we would probably continue treatment, even if we don't see a full 2 log drop. I'm not sure what the circumstances would have to be that we would quit trying and declare treatment a failure, but I was glad to hear that we're most likely going to push on, regardless of what the labs say.

Oh yeah, and I turned 34 yesterday... woo hoo!

To shift gears a little bit, a fellow HepC blogger suggested a few weeks back that I should write a bit about how I work with doctors and advocate for myself, given that I've had quite a bit more exposure to the medical profession in my lifetime than most people have. I've been turning the subject over in my head since then, trying to formulate some thoughts that would be useful to anybody reading this. Rather than delving into specific examples, I thought I'd offer some guidelines and strategies that I've found really effective:

Above all else, it's crucial to remember that as a patient, you are a customer, buying a service. If the service is unsatisfactory, send it back. It's very easy to get sucked into the trap of thinking about our healthcare differently from, say, hiring somebody to paint our house. Obviously, health matters carry more emotional and psychological weight, but the nature of the transaction is essentially the same; you are engaging a professional to address a specific need. If the house painter blows the job, you would respond in one of two ways: a) drag them back to fix it, or b) find a different painter. Nobody's going to revoke your soul for doing the same with a doctor. Once you cross the threshold in your thinking from being a good, obedient patient to being a good, informed consumer, you will most likely see the dynamic of your healthcare change from a unidirectional, paternalistic process to a collaborative problem-solving effort. You will also find that any good doctor will respond very positively to this. Put yourself in their shoes, and consider which you'd prefer: a patient that comes to you with the expectation that you have all the answers and will be absolutely right in all matters, or a patient that comes to you ready to bring ideas to the table and explore solutions together. The first approach creates a lot of pressure, where the second creates the feeling of a team effort. This leads to my second point...
Remember that your doctor is a human being. Certainly, he or she brings a higher level of medical expertise to the table, but he or she is also prone to mistakes, misjudgements, lack of adequate information, etc. that we all are. Heap on top of this the emotional toll of the pressure they constantly find themselves under, and it's not hard to see why many doctors appear to overcompensate by coming across as cocky know-it-alls. I've found it very useful to try to connect with my doctors and nurses as people, and let them know that I expect them to do their best, but that I also understand they don't have all the answers and that I'm willing to cut them some slack. Not only is it a little disarming, but you can almost feel the wave of relief come across.
It's your body and your health... therefore, it is ABSOLUTELY INCUMBENT ON YOU to learn as much as you possibly can about your own condition, whatever it may be. This can be tricky, because there are a lot of conflicting opinions about many modern health conditions. You may have to paddle through a lot of mixed information to draw your own conclusions. The internet is a good resource for getting the full scope of opinions on just about any condition, but should be taken carefully. Just because it's on the web, doesn't make it true... consider the source when weighing information. A medical journal is probably going to be a bit more solid source than some guy's blog (insert self-deprecating wink here). Also, building on point 2, recognize that your doctor is a resource for information, and don't be afraid to ask questions. Better still, write down your questions before your visit, and take notes while you're there! I've found that my doctors warm right up when I come in and ask well-informed questions and dialogue with them as a peer in the effort to keep me healthy, rather than as a supplicant acolyte looking for them to show me the way. There have even been instances where I'll toss an idea out to a doctor that causes them to say, "gee, I've never looked at it that way before... it might be worth exploration." Imagine that... a patient getting a doctor to open up their thinking, and nobody's feelings got hurt and it didn't result in a big shouting match. Of course, a lot of it's in the delivery! The less confrontational you are, the better.
Always remember that it's your body and your health, and nobody has the right to put medications into it or perform operations or whatever without your consent. Before you accept treatment, make damned good and sure that you're comfortable with what you're doing. Your mind is an incredibly powerful tool when it comes to your health, and if you have serious doubts about a treatment, it's very possible that the treatment won't work. Likewise, if you're confident about a treatment (both intellectually and at the gut-level), you're almost certainly improving the chances that the treatment will succeed.
Bearing in mind point 1 (that you're a customer), if you find that your patient-doctor relationship just isn't working, find another doctor who you can work with. This working relationship is a very delicate thing because it's predicated on trust, cooperation and openness to new ideas, and if any one of these things is missing, it may be time to move on. Admittedly, this can be difficult, particularly in a managed care situation where you have a limited pool of specialists to choose from, but you should generally be able to find somebody you can work with. It may be intimidating to leave a doctor you know, and you may not even know where to begin looking for another doctor. First off, if you have any other doctors that you do work well with (such as a Primary), ask them for recommendations or a referral. This is going to sound really counter-intuitive, but you can also ask the doctor you're having difficulties with. Think about it, though: this doctor knows his or her colleagues, and also has a sense of what type of patient you are, and would probably be well-positioned to steer you toward a doctor who will be a better fit. Moreover, they'll probably be a little relieved to get out of a difficult situation (yes, doctors are every bit as capable of seeing us as difficult patients as we are of seeing them as difficult doctors), but are still concerned enough about good medicine and your well-being that they would try to pair you off with a colleague who you'll be able to work with. Lastly, it gives you the chance to leave on a good note, because you've shown that while you are unable to work with them directly, you recognize their expertise and knowledge of their colleagues, and most importantly, their desire to see you, as a patient, get the best care possible.
Lastly, in the ER (as opposed to the more clinical long-term management setting I was referring to above), ALL BETS ARE OFF. Be prepared to throw some elbows if you have to in order to get satisfactory care (which is about the best you should hope for). ER staffs are a whole different culture than clinicians, and deal with such a high-churn rate of patients that you have got to be a hard-assed advocate, and take no shit from anybody. More to the point, these guys see such a wide variety of stuff that they often don't know how to handle a special condition like hemophilia... be prepared to educate them, because it almost guaranteed that you know a whole hell of a lot more about your condition than they do. Don't be afraid to stand your ground. One really useful tip: you'll almost certainly find the Interns more willing to listen to you than any of the nursing staff... especially the triage nurses. Anecdotally, I once had a triage nurse run down my array of maladies (hemophilia, HIV and HepC), and then tell my to my face that the fact that I smoked 5 cigarettes was far and away the greatest threat to my health, and I should quit immediately. Dangers of smoking notwithstanding, give me a break!

Dare I say... stabilizing?

2006-06-07T21:33:00.000-07:00

This will probably be a shorter than usual post. Got my most recent lab results, and it looks like most of my levels are stabilizing: potassium is back up inside the low edge of normal, platelets have not only levelled off, but are rising a bit, lipase is actually below baseline (I started out high)... overall, things are looking really good! Lactate is still elevated, but it's such a twitchy test and measurement, that I think anybody would be hard-pressed to say what it really means.

I've got to say, I'm genuinely pleased to see my counts heading toward normalcy... I find this very reassuring. I suppose I should wait to hear what my docs have to say.

I also feel compelled to back off of my previous rant a bit. I'm afraid I might have created the impression of a cavalier and cynical attitude toward the medical profession. Overall, I've had very good experiences with my doctors, and am impressed by their level of expertise and dedication. The point I was really trying to get across is that I think western medicine in general suffers from a fixation on tests and data, and a mechanistic approach to maintaining a patient's health. I would like to see a trend toward more "big-picture thinking". It would be naive to think this could happen overnight, but maybe it will start to find its way into the process of educating young medical professionals, and those that are already practicing might begin to rethink some of their assumptions and habits.

I am not my potassium count

2006-06-06T00:26:00.000-07:00

Allrighty then. Shot 10 last Friday. 20% through and 2 weeks from the viral load... woo hoo!

Brace yourself... this one's a rant. I don't mean it as a rebuke of my health care team, but rather an expression of my frustration.

Treatment's going fine, although I'm getting really tired of the recent routine with my doctors: we're pulling labs once a week, which is fine with me. Needles don't bother me in the least, and I would prefer we err on the side of caution rather than get complacent or reckless.

That said, things are getting downright silly. A couple of weeks ago, one doc expressed concern that my albumin was a little low, and was all set to send me to a nutritionist. The following week, it came back up, and no further mention. However, plateletes were down. Okay, that's a valid concern, and worth watching. Judging from last weeks tests, they are in fact leveling off, and still haven't gotten low enough to be considered dangerous. Lipase and lactate back up because of the ribavirin rechallenge. No-brainer: stop the ribavirin. Problem solved. Last week: my potassium dips slightly below normal, prompting one of my docs to tell me they can prescribe a pill. Enough!!! (I mean c'mon... a prescription?!! How about "add an occasional banana to your diet.")

First off, I suspect that my lactate went up and potassium dropped because I was dealing with a low level kidney bleed last week (I got kind of slack about my prophylaxis, and it just sort of slipped on through). Also, my diet was thrown off by recent travel and other assorted chaos. Funny how good habits are hard to maintain.

Anyhow, after a weekend of catching up on factor, bananas and sleep (and X-Men!!!), I'm feeling right on top of my game. Had labs drawn again this morning and am still waiting on results. I swear, every time I go in now, I try to will all the levels they're testing to be dead-center of reference range (as if that would actually help) so the docs might give me a moment's peace!

Whatever happened to the old-school doctors of my childhood who looked at my parents when they expressed concern (read: terror) over my probable HIV infection, and said "How does he feel? Fine? Active as usual? Not missing any school? Looks healthy to me!" (Oddly enough, my HIV doc is old-school in this way, and that's why he and I get along so well.)

The point I'm driving at here is that doctors today seem to be so focused on the tests and the levels and the so-called "hard data" that they can quantify and correlate and graph and mumble arcane chants over, that they miss the big picture. The human construct is not a clockwork... it can't be reduced to a mechanistic exchange of tissues and chemicals and fluids. It is a phenomenal entity that goes way beyond the quantifiable: spirit, attitude, happiness, perspective, lifestyle... faith! Doctors can't measure these things, though, so they factor them out of the equation. The sad fact is, they do so to the detriment of their patients and the practice of medicine in general.

My plea to any medical professional who happens to read this: remember to put your data aside once in a while and take a good long hard look at the big picture that is your patient. You might be amazed at what you discover.

More Wacky Labs

2006-05-29T14:40:00.000-07:00

Shot 9 was last Friday. More of the same... no symptomatic side effects worth mentioning.

The fog has cleared since going off the Ribavirin again; I noticed an improvement as soon as the day after stopping, and I feel like I've been getting sharper since.

The only news at this point is that my platelets dropped pretty significantly about two blood tests back, and last weeks labs suggest they're still trending downward, although not nearly as sharply as the initial drop. It looks to me like I might be bottoming out or "plateauing" as one of my consulting docs referred to it. We're still watching it closely, because while I'm not quite in the danger zone, I'm getting down there. I hope I do level off, otherwise, we're going to be discussing the addition of yet another drug (Epogen) to my regimen. This is an injectable commonly used to offset the platelet drop that's often seen in chemotherapy. The drug itself doesn't worry me too much, but I am a little put off by the prospect of yet another medication being added to my regimen. How many strange chemicals can a body take on an ongoing basis?!

It also occurs to me: the platelet drop is probably caused by my pancreas destroying them. It seems logical then, that the inflammation of my pancreas by the Ribavirin (possibly cross-reacting with one of my other meds) might be the culprit. Therefore, I think it makes the most sense to watch things for a bit and see if my platelet levels normalize as my pancreas calms down.

I guess the particular concern the docs have about my low platelets is my hemophilia, and the possibility of an increased vulnerability to spontaneous bleeding episodes. This sort of highlights how poorly understood hemophilia is, in general. Platelets don't play such a significant role in the sort of internal bleeding into joints and muscles that is most common in hemophilia. Much more important is the cascade of clotting proteins (factors), one of which is missing in a hemophiliac. In my case, the missing protein is Factor VIII.

The reason I'm not terribly concerned about the low platelets (which would suggest that I would be more prone to soft tissue bleeding and bruising) is that I take my clotting factor on a prophylaxis schedule. That is, I infuse the missing protein twice a week, whether I'm having a bleeding episode or not. This keeps my clotting levels up and tends to prevent spontaneous bleeding episodes. Before I started "prophy", I had between 50 and 60 bleeding episodes a year, usually in joints that were already damaged by previous "bleeds." Since starting prophy about 3 years ago, I have maybe one bleed per year, and it's always related to some specific trauma or injury.

Anyhow, week 12 is in sight. I'm hoping we hold off any decision until after that, because I'd prefer to get the viral load test done and see some reassurance that I'm responding to treatment BEFORE starting another new drug. It seems pointless to me to start something that I might get pulled off of two to three weeks later because the HepC therapy isn't working.

Abort/Continue

2006-05-24T18:46:00.000-07:00

I was slammed with work yesterday and didn't make it to the lab in time to work with the phlebotomists who had been specifically trained to do my special no-tourniquet draws (they've got it down cold, now!), so I went into town today to have them done. Like I said, they totally grok the process, and the draw went flawlessly.

Here's the irony (and the good news): we're not going to have to do the tourniquet-free draws anymore, except for one next week. Doh!!!

The reason for this is that after less than a week back on a 1/2 dose of the Ribavirin, my labs shot back up. I haven't seen the specific results, but my nurse sounded like she and my consulting doc were a little startled by just how fast and aggressive the reaction was. Next week's draw is to make sure my numbers get back in order.

So, it looks like we're going to settle in to PEG monotherapy and try to hang in there for the long haul. This, of course, is presuming we see the 2 log drop in viral load at week 12. I'm keeping my fingers crossed.

If you've been following the blog, you might guess correctly that I'm fine with this, and actually rather happy to be headed back off the Ribavirin. Interestingly, while I was back on, I noticed a slight fogginess (hardly worth mentioning, but it was there). I don't know how better to describe it... I certainly wouldn't call it fatigue. It felt more like a mild hangover without the headache or thirst.

Anyhow, I certainly hope all the docs following my case take note of my difficulties with the Ribavirin and consider the question of "why?". My own suspicion is that it was cross-reacting with one of my HIV meds (probably the Lamivudine), which Medline Plus reports as potentially problematic.

For the record (and since I don't think I mentioned it before), my HIV cocktail is Lamivudine, Tenofovir and Efavirenz. Also, as Carol pointed out to me (thank you!), I never bothered to mention what HepC genotype I have; it's 1a... the least responsive to treatment and most common in the United States. At some point I'm sure I'll let fly with my thoughts on the weakness of the statistical model most often quoted today (a paper published last July which ballparks combo-therapy SVR for gen-1a at around 30% for coinfecteds), but I figure I've yammered on quite enough for the moment.

Be well.

"Rechallenge"

2006-05-19T09:21:00.000-07:00

Well, shot 7 last Friday was totally uneventful (thus no post), and I'm just marching on through treatment. Tonight is shot 8... another milestone of sorts: 1/6th of the way there... 40 weeks left (about to cross the threshhold out of the 40s into the 30s), etc. It also represents the emptying of pack 2 of Peg shots (they come in 4-dose packs) out of a total of 12 that I'll use over the entire course of treatment. This is assuming, of course, I go the full 48 weeks. I'm also now 2/3 of the way to my first viral load count (which is at week 12)... this, I'm excited about, although I'm trying to keep my hopes reasonable.

The news this week is that I'm back on the Ribavirin at a reduced dose (1/2 what I started on). There's a general consensus, backed up by the statistical data, that my odds of achieving an SVR (success) are much better if we keep it in the mix. At the same time, we're trying to strike a balance against what it did to my labs before, to keep the toxicities from dragging me under.

This is the approach I was both expecting and hoping for (although I'm still not crazy, intellectually, about Ribavirin). I'm pleased at this direction as it seems to be weighing all factors very reasonably while remaining focused on the end goal of scrubbing this rotten little virus out of my system. I had a very positive conversation with one of the docs monitoring my case closely. We've had a track record of not seeing eye to eye in the past, but it's clear now that we're very much on the same page, so that was both gratifying and a bit of a relief. We agreed that we're going to be watching my labs closely for the next several weeks, and adjust the Ribavirin accordingly (either up or off again, depending...). She tentatively asked if I'd be comfortable going forward with Peg monotherapy if we get into trouble with the Ribavirin again, and I could feel the wave of relief come through the phone when I said "absolutely!"

So, as I said before, shot 8 is tonight... I'm supposed to go get labs drawn next Tuesday. I'm sure we're not going to make any immediate decisions, but it will be interesting to see if my Lipase starts climbing again (it's back at baseline, by the way).

Ciao for now!

Did I mention...

2006-05-08T12:30:00.000-07:00

I've never been particularly good at journaling. I start, then kind of wander off to do other things. In fact, this represents the most diligence I've put into a journal since the weekly journals we were required to keep for my Freshman Theology class in High School.

Anyhow, that's my roundabout way of making excuses for not writing much recently.

Fact is, there's nothing to write about. I did shot #6 on Friday before our Cinco De Mayo party. Still no side effects... I'm feeling great. I kind of figure this far in, any side effects should have subsided anyway, so I don't anticipate much trouble going forward.

I'll probably only be posting anything interesting that crops up, and maybe lab results... I'm really looking forward to week 12 (half way there!), when we're scheduled to test my viral load and see how well (or not) the treatment is working. In the meantime, it's onward at a steady pace.

3 needle sticks in 1 week, yeesh!!!

2006-04-29T09:15:00.000-07:00

Well, last night was shot # 5. Still feeling fine. Still delighted to be off the Ribavirin.

News on the labs: things were definitely out of whack in last Thursday's draw, and apparently it was a combination of the Ribavirin causing problems and the labs at my HMO (I won't name names for obvious reasons) having no clue how to draw a lactate test correctly (ie. no tourniquet, which tube to use, etc.).

We finally got some results that made sense on this Thursday's draw, which was done at my consulting doc's hospital, who clearly DO know what they're doing. And now the good news: everything appears to be trending back toward normal, and even more importantly (and funny except for all the sticks required to figure it out!), my lactate level was at 1.1, which is well within the normal reference range (as opposed to the 2.5 my HMO lab was reporting). Our suspicion is that my lactate level has been fine this whole time, and the wonky results were caused by lab error.

Hopefully, this means we're going to give my veins a little break to recover, and I'm just going to march on forward through treatment.

My consulting doc may be thinking about reintroducing the Ribavirin (maybe at a lower dose), but it seems like she's not too eager to do that. Neither am I. I guess we'll see. One thing I've learned in all of this is that it's completely fruitless to try to predict what's around the next corner.

One additional note... I tend to view things in numbers, thresholds and milestones... with shot 5 in me, I've passed the 10% mark for the full course of treatment, which gives me great comfort. More to the point, 43 weeks to go translates to almost exactly 10 months. Piece of cake!

Course correction

2006-04-23T14:26:00.000-07:00

As I mentioned in my last post, some of my labs have gotten a bit out of whack, which could be an indicator of trouble. After talking with my docs, it seems like the suspicion is that the Ribavirin may be the culprit (possibly cross-reacting with one or more of my HIV meds?), so as of Friday afternoon, I've been taken off of it, but not the interferon.

This comes to me as great news on two levels:

1. I was worried we'd discontinue therapy completely, which is a prospect I'm not too crazy about, now that I'm in the thick of it.

2. Of the two meds (interferon and Ribavirin), I was definitely more anxious about the Ribavirin, given that it's still a bit of an unknown, and has a really nasty payload of toxicities.

So I'm going to have more labs drawn tomorrow to see if things are showing any signs of normalizing. I'm cautiously optimistic. My hope now is that things normalize and we just decide to run with interferon monotherapy. While the chances of success aren't as high, it seems like a very tolerable option that could be beneficial, even if I don't achieve an SVR (clear the virus).

Anecdotally, I've heard stories of other hemophiliacs who developed lactic acidosis and had to be pulled from combo therapy completely, then later did monotherapy and cleared the virus successfully. Fingers crossed... I'm hoping I might be one of those guys (successful on monotherapy, not nailed by lactic acidosis and pulled from treatment, I mean).

I'll know more later this week after the lab results come back.

A little agitated, and it ain't a side effect!

2006-04-21T10:12:00.000-07:00

Actually, I'm really in a very good mood. However, I am a little irked at something specific:

My labs results drawn last Saturday -- and again yesterday -- were a little wonky (Lipase and Lactate are up a bit). My Lipase was high at baseline, and it's been climbing steadily. Apparently, a rise in Lipase in conjunction with a rise in Amylase is an indicator of pancreatic inflammation. The strange part is that my Amylase is holding steady within the normal reference range, and I'm not feeling ANY symptoms suggestive of pancreatic problems (nausea, abdominal to lower back pain, vomiting, etc.). My Lactate is just slightly outside the high limit of the normal reference range. Lactate breaks down triglycerides... you hear a lot of talk about lactic acid in exercise, because it elevates during exertion to help build muscle mass.

Anyhow, my docs seem to be a bit worried about this turn of events (despite the fact that I'm feeling great and seem to be responding well to treatment, otherwise). Obviously, the concern is reasonable, as pancreatitis can be difficult and lactic acidosis can be really bad news... possibly fatal.

I'm trying hard not to be too cavalier about this, but at the same time, I'm kind of irritated and anxious, because I really don't want to get pulled from treatment now that I'm in it! It's taken me a long time and a lot of deliberation to reach the tipping point of decision to start treatment, and I'm not crazy about pulling the plug at the first ambiguous sign of trouble. Who knows, maybe I'm speculating too much, and my doc simply wants to keep a close eye on things. Then again, I suppose there's a question of "where's the threshold?" that would determine it best to discontinue treatment.

My instinct and what my body is telling me (regardless of the blood tests) incline me to want to ride this out for a while and see if I don't normalize within a couple of weeks. Moreover, I've seen a number of protocols for lab draws while on treatment, and they don't even monitor these components (Lipase and Lactate) except to establish a baseline, and then if they see clinical indication of trouble. I get that my doc wants to approach my particular situation methodically and with a great deal of caution, but sometimes in life, you gotta roll the dice!

Shot 3, and some context

2006-04-15T09:47:00.000-07:00

Well, I took my third shot last night, and I'm not feeling at all out of the ordinary today. No bruising at the site, no flu like symptoms... nothing.

I was a little tired yesterday, but that could easily be explained by the fact that I started my week with an intense three days of planning meetings for work, down in California (work travel always knocks the wind out of my sails!), and by the fact that I spent the later part of the week recovering from a bad muscle bleed in the back of my leg. It would be really difficult for me to point to anything in my experience so far and say, "Yep, that's a side effect!" The possible exception is that my temperature seems to fluctuate between 97.6 and 100.0 degrees, which I don't think it normally does. When it goes up, I take some Advil and it comes back down, so it's no big deal.

It's probably important to make some comments here about my specific response to treatment.

First off, I've been living with chronic conditions all my life: first hemophilia, which comes with its share of aches and pains (particularly now that most of my joints are pretty trashed); and then HIV, which also has its program of annoyances. The point is, given my life experience, I tend to evaluate discomfort in an entirely different way than most people would... it's just something that comes with the territory for me, so it's hard for me to identify the cause of any particular abnormalities, since I don't honestly recall a day since high school without some sort of discomfort. I've just gotten so used to it all.

Secondly, I think it's really important to remind anybody reading this blog that I'm journaling one guy's experience... mine. This is obviously not how treatment is going to go for everybody. I have several friends in a very similar boat to my own (hemophilia, HIV, etc.) who have had entirely different experiences with treatment... it really runs the gamut from really difficult to really easy, and varies greatly from one individual to the next.

Lastly, the point of this blog is to address an information vacuum I perceived when going through my own process of deciding whether or not to treat (five years of reading, talking to doctors and experts, and adamantly resisting the idea). I'm not doing this with any agenda, other than to describe what I'm going through. The decision to treat is very complicated, and requires a lot of research, introspection, communication with your doctor(s) and family, and evaluation. Are there better options on the horizon? You bet! But it's going to be a while before they're available... and in my case, the wait would have been too risky. It's a tough call, no matter how you slice it, and I'm certainly not going to jump up and down and say that everybody should rush out and get on treatment. That said, I will add that it's going very well for me, and I'm feeling a lot less anxious about being on treatment now than I was about getting on treatment, even as recently as a month ago.

Very little to report

2006-04-13T09:54:00.000-07:00

I haven't been blogging for the past few days for two reasons: 1. I've been out of town for work, and 2. I've had very little to talk about.

Side effects seem to be pushing toward non-existent, and I hope this continues. My hunch is that my efforts to keep hydrated, rested and that Heather keeps popping B12s into me is helping. I was a little worried about getting fatigued on my trip (3 days out of town on business... all hands planning meeting for work), but I had no problem whatsoever.

So, as my C programming instructor back in college used to say, "onward and onward."

Deafening silence

2006-04-08T10:55:00.000-07:00

So yesterday was my second shot, and I'm clearly more comfortable with the process, now that I know what to expect. I decided to shoot into the other side of my belly since I still had a bruise from last week's shot. I'm guessing the bruise came as a result of my nicking a capillary that decided to ooze steadily throughout the week, or because my hand was shaking a bit and the needle just irritated the area. Anyhow, no bruising whatsoever at last night's injection site.

The other good news today: no muscle aches or fatigue! (Or anything else, for that matter) Knock on wood!

As mentioned in my previous post, I had some labs drawn yesterday, too. I haven't gotten all the results back yet, but my lactate level hasn't budged from the baseline, which is a good sign (elevated lactate indicates lactic acidosis, which is one of the more nasty and dangerous potential side effects). I'm hopeful it will continue to hold steady over the coming weeks. I'm still waiting for the results on my CBC (Combined Blood Count), which includes a red cell count to determine if I'm showing signs of anemia. Again, I'm hopeful that everything is cool.

In general, I'm feeling pretty optimistic.

Not much to write about

2006-04-06T10:13:00.000-07:00

I realize I've been kind of quiet the last few days. It's not because I've been down sick, or anything, but rather because I haven't had all that much to say. Besides, I've been busy doing my taxes (yech!), getting ready for the all-hands meeting at work and adjusting to daylight savings time (which always throws me off). As far as the treatment goes, I seem to be handling it just fine: my energy is a tad off, and my temperature goes up and down (not significantly in either direction), but otherwise I'm not really noticing anything. Today I feel completely normal. I guess the next hurdle to clear is getting my first set of labs drawn tomorrow. As I understand it, we're mostly checking for indicators of good (or poor) tolerance, anemia and such. I'm guessing things are going to look pretty normal. I sort of wish we were also testing liver enzymes and viral load, just because I'd love to sneak a peek and see some evidence that it's working, but I guess I'll just have to wait for that.

I've been pondering some of the listed side effects. I'm rather familiar with how drug trials are managed, and know they typically report every little thing that the subject mentions. What I wonder is if a lot of these side effects, such as the depression and whatnot, don't have more to do with underlying conditions irrespective of treatment. No study is perfect, and it seems like the way they're looking at the data is pretty focused, without taking the big picture of each individual case into account. If I'm right, it's unfortunate, because they're missing an opportunity to define a clear profile for likelihood of success versus failure (either by drop-out or non-response). Food for thought.

Delayed reaction

2006-04-03T20:50:00.000-07:00

Okay, so maybe I spoke too soon. I've been kind of low energy all day (not exceptionally, just a bit off from usual), tonight I'm running a fever of 100 on the dot (barely a fever, but I usually run a degree or so cool), and my psoriasis is really flaring up. All tolled, still not that bad, but mildly annoying. If this is as bad as it gets, I'm a happy camper... especially if it stops after a couple of weeks like they say it will.

On the upside, I'm still my usual optimistic and cheerful self, and it seems like this isn't going to get in the way of my ability to work, which I was particularly worried about.

I guess let's see how I feel tomorrow.

What side effects?!

2006-04-02T11:10:00.000-07:00

I'm still reserving judgement, but so far, the side effects of treatment are nowhere near as awful as they sounded. The only thing I've experienced is the shoulder and neck ache, which is feeling significantly better today, although still faintly present. Aspercreme and Advil help a lot. I also slept a lot yesterday, but that was more out of boredom than anything else. I certainly didn't feel any fatigue. I specifically kept the day open to allow myself to feel sick, so I spent most of the day in bed watching TV and taking the occasional nap. To tell the truth, it was nice to have a day off!

I should probably offer up a note as to what sort of lifestyle changes I've made to offset potential side effects. Very little has changed except that I'm being very diligent about keeping myself hydrated. Anybody who knows me well knows this is something I don't usually pay much attention to... I'm pushing between 5 and 8 glasses of water daily (I started the day before treatment, just to ramp myself up).

My thought for the day is twofold: maybe I'm one of the lucky ones who doesn't experience much in the way of side effects. At the same time, I wonder... if you have a virus in your system that could potentially kill you, wouldn't you put up with a significant amount of shit to get rid of it? I certainly would.

Pain in the neck

2006-04-01T09:41:00.000-08:00

Okay, so we're into my first Saturday, post-shot, and I'm not noticing a whole hell of a lot in the way of side effects (knock on wood!). About my biggest complaint is that the right side of my neck and my right trapezius muscle are kind of sore, but I can turn my head without wincing. I'm not ready to cheerfully declare this a piece of cake, but so far, I'm pretty unimpressed.

Oh, this is funny! Polly, my middle-aged one-eyed pug, pulled the canine equivalent of an April fools joke this morning. We turned off the alarms and decided to sleep in a bit, so she came whuffling around to my side of the bed, backed her little tush up to just under my nose, and took a dump. Thankfully, she's got nice firm (albeit STINKY!) little stools.

Into the breach...

2006-03-31T19:01:00.000-08:00

Well, the first of the unknowns is behind me. I just took my shot about five minutes ago, and it was an entirely benign experience. Bear in mind that, as a hemophiliac, I access a vein twice a week... by comparison, this was nothing. Now it's sit back and wait to see what it does. I'm sure I'll have something to say tomorrow.

D-Day

2006-03-31T08:52:00.000-08:00

Well, it's here. First shot and mouthful of pills tonight.

I've been back and forth since my last post, running the range of feelings from "oh shit, what am I getting myself into?!" to "yeah, whatever." (indifference) to "bring it on... let the healing begin!". I'm hoping the emotional rollercoaster ride will subside once I have a few shots under my belt (technically above my belt, actually) and know how I'm going to respond to the treatment... not to mention seeing the first few rounds of lab results.

Speaking of lab results, it's been a busy week. Tuesday afternoon, I spent TWO HOURS talking with my nurse practitioner (she's cool!!!) about what to expect and how to do the shots. After a lifetime of intravenous injections for my clotting factor, a 30-second sub-cu in the belly seems pretty easy to handle. After our session, I had my baseline labs drawn.

Then yesterday, I got the full eye exam (they put me through the whole 9 yards, probably because they figured from looking at my chart that I don't visit Opthamologists too often): glaucoma (twice!), eye chart, different eye chart, peripheral vision and of course retina exam complete with dilation. Joy. Luckily, everything is fine on that front. Hope it stays that way. Then I got to trot back to the lab to let them draw the labs they forgot to order on Tuesday, and picked up my meds.

I'm sure today, I'm going to be a bundle of angst and anticipation, waiting for this evening to get started. It's tempting to just go for it and see what happens, but I think I'd rather wait and sleep through whatever is around the next corner.

Prologue

2006-03-26T09:57:00.000-08:00

So here's the skinny: I'm a hemophiliac. My primary method of treatment is Factor VIII replacement therapy. Before the availability of recombinant products in the 90's all factor available was derived from pooled plasma collected from up to 50,000 "donors" per lot. More often than not, back in the 70's and 80's, these donors were prison inmates or citizens of third world countries. As a result, my factor treatment (and that of most other hemophiliacs) came with extra payloads such as HIV and HepC. I got both.

HIV has been talked to death, but there's a surprising dearth of information about HepC... particularly what treatment is really like. The current standard of treatment is Pegylated Interferon + Ribavirin. Go do a search on these drugs and read about the side effects, and it sounds like hell. The up side is that there's a fair chance of clearing the virus completely, thereby saving the liver. Tradeoffs.

It was recently determined via biopsy that my liver is in pretty bad shape (cirrhosis), and that now is about the best time for me to take a shot at treatment, rather than waiting for my condition to get worse, which could result in fewer options. As such, I'm going to be starting the 48 week course of treatment (thus the title of this blog) this coming week. I'm doing it with a mixture of trepidation (how bad are the side effects, really?) and hope (maybe I can put this shit behind me).

I'm going to use this blog as a journal of my experience on treatment... mostly so that others considering treatment can get some insight from what I encounter. Who knows for sure what lies ahead... maybe it's the roughest year of my life... maybe I sail right through without even noticing a difference.

The one thing I do know is that if the treatment succeeds, 48 weeks of whatever is a small price to pay to escape wondering when my liver is going to blow up.

I'll keep you posted.