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

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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!