Jan's Interferon Diary: My Own Private Descent Into Downtown Hell
The treatment started on September 24th, 2005, right after Tommy and I attended the Queens of the Stone Age / Nine Inch Nails concert at the Rose Garden. (Memorable show.) I gave myself a shot in the leg, having attended a little class about the proper technique for self-administration of the weekly injection. I call it "playing Doctor." It's a little grotesque, playing with needles at this point in my life. There's no "rush." The next day I felt truly shitty, barfing, fever. Surrounded by pain on all sides. It brought to mind a vivid image from the World War II account of a young American Lieutenant Weiss (who lives in Portland -- small world!) who radioed in artillery strikes and spoke the famous words, "Enemy north, south, east and west."
As the treatment progressed, I never did get used to it. Every weekend was a total drag, the start of three days' misery. Plus the Ribavirin pills, which are toxic as hell and mutated my genes (temporarily!). Great! They tell you to use double contraception to avoid any chance of pregnancy, saying you *will* have a deformed baby. WTF? But it must be said that from the medical community's point of view, I was able to "tolerate" the treatment and its debilitating side effects, notably full-time anaemia.
The results appear encouraging, indeed I may be counted amongst the small number of patients for whom this whole ordeal was a success. My liver enzyme levels have returned to normal for the first time in 25 years, and the twelve-week test of the viral load revealed a 4.7 logarithm decline, which was very encouraging. A viral population of over 2 million had been reduced to less than fifty individuals. At the twenty-four week test it appeared to be reduced to the "no detectable viral load" level, which is the result one dreams of and prays for. This would seem to indicate that the treatment, blunt and brutal though it may be, appears to have produced the desired result, which is the complete extermination of the virus. However, follow-up studies have proven conclusively that the virus very rarely gets eradicated and that that's not a realistic goal with this treatment. It just gets knocked down to where they can't detect it in your bloodstream, but a few die-hard individual viruses will hang out and hide up in the remote areas of the body, where they aren't really part of the bloodstream, and then they eventually come back. Especially with the most common genome ("1a"), almost everyone gets re-infected. And then what -- they try to talk you into doing this again! (That's exactly what happened to a good friend of mine.) The best news came when I took the six-months-after blood test, where once again there was "no detectable load" of hepatitis C virus. This is the best result one can hope for. I understand that the virus may in fact reappear over time, but for now the treatment appears to have cleared the little buggers out of my body.
The side effects were debilitating. Dryness (I had to drink three litres of water per day), itchy skin, dry eyeballs, anaemia, and the famous "severe flu-like symptoms," which include all-around pain and a fever (slight, in my personal case). Just imagine having a really shitty case of the flu, three days a week. Ecch. Basically, I gave myself a shot of interferon every Saturday night around midnight. There's a lag time of at least twelve hours, after which I would begin to feel increasingly miserable. By Sunday night I was usually completely out of commission, not fit for anything except lying in bed and crying. I have never cried so much in my entire life. Mondays were the worst, a full day's helping of unrelenting misery. Tuesdays weren't much better. Then on Wednesdays to Saturdays, I would drag myself in to work, probably looking more dead than alive. My co-workers were marvelously understanding and supportive. On some weeks I felt a little better on Thursday or Friday, for an hour or two. It helped to smoke pot, and the pain relieving pills I am prescribed were also very helpful. The Ribavirin pills, which I had to take every day in the morning and evening, tended to tear up my digestive system in an awful way. When they say, "take with food," they mean it. I found my results were least upsetting when I'd take the Ribavirin pills in the middle of a substantial meal -- the problem being that there is a loss of appetite with this treatment, making it a challenge to work up any kind of an appetite. I lost over thirty pounds, returning to my college weight, and kept getting weaker and weaker, but the regular blood draws, which left both of my arms with deluxe cheloid scars like an ageing junkie, indicated that nothing truly alarming was going on. Another side effect was increased irritability. It became more and more challenging to put up with annoyances and B.S.
The whole thing totally sucked ass, it was the worst year of my life, but I went ahead with it because it may cure my hepatitis C, which was formerly considered incurable. So the chances of being permanently cured are around 3%, I'll have to take those odds. My wife, children, and friends have proven themselves to be the most wonderful support group. Lots of kind- hearted people included me in their thoughts and prayers, which can only be a good thing.
I finished the 48-week course of treatment at the end of August, 2006, worn out completely. I did everything they asked, never missed a shot nor a dose of the pills, guzzled three litres of water per day, stayed well clear of all forms of alcohol, even mouthwash. I lost thirty pounds and slimmed down considerably, although that weight bounced right back -- so there goes the only "obvious" benefit of the treatment ... I'm relieved to be done with the attack on my body, and am slowly starting to feel a little better. I was weakened by the treatment and still need to regain my strength. It'll be a while before I can run a mile. Apparently lots of people do not pass the six-month test, so I can count myself lucky. The crucial two-year test was done in early 2009, and to my great relief I passed that one with "no detectable viral load" as well. I know for sure that I'm a very, very lucky man. Dr. Rob Shneidman of Kaiser Permanente tells me that I no longer have hepatitis C. Considering the odds, that sounds like music to me.
updated March 23rd, 2009