Blogging in E minor
Usually just a bunch of silly crap.

The Year of the Dragon

On My First Drug-Free Day, I went to an early haircut appointment.  I hoped to do something with the Hitler-esque comb over of thinning hair that had resulted from the aggressive antiviral drug regimen I had started 28 weeks earlier. As unfashionable a coif this was, I deemed it to be preferable to the Francis of Assisi look that would otherwise occur. I warned my stylist, who I’ve known to work quickly, to be easy on the head.

            As I drove away from the shop, I realized that the morning queasiness that had followed my daily 6 am dosing was absent. Same with the bitter, chemical taste I had grown accustomed to during the past six months. Already I was feeling better on My First Drug-Free Day!

            In addition to this day being a personal milestone, it happened to be our 17th wedding anniversary as well. My wife, Felicia, and I had big plans. It had been quite a while since we had done anything special, and this was certainly cause for celebration. We dropped our daughter off with grandma and headed downtown.

            At 2 pm, we attended a circus performed exclusively by child acrobats, contortionists and jugglers. I did not need to excuse myself to stuff my face with drugs.

            Afterward, we toured the avant-garde museum that hosted the show. I  was impressed with their Exhibit of Urban Ornamentation, which included a building gargoyle collection and a fancy door knob display. We crawled through the series of tunnels and tubes that snaked their way through the facility like some convoluted, Seussian plumbing system. Children laughed and played around us. The experience was entirely life-affirming.

            The Victrelis alarms that chimed from my phone every eight hours, every day for the past 24 weeks had been disabled – one-by-one – the day before. There would be no injections, no 10 pm meds, and no inexplicable tears for fallen Titans on my First Drug-Free Day. Instead, we dined well at one of our favorite restaurants and nibbled on fru-fru pastries at an upscale coffee shop. All was good.

            My second worst fear, as my treatment drew to a close, was that my recovery would be so gradual that I wouldn’t notice any difference. This certainly wasn’t the case. After four days post-meds, I posted on Facebook:  “Today I noticed a little spring in my step. I’m getting my power walk back! I pray I never forget how good it feels not to feel bad.”

            Soon began the Great Rebound. My workouts, which had been minimal attempts to defy atrophy, began to intensify. I had regained the ability to get a pump. Apparently, the drug-induced anemia had prevented this. I began running on the treadmill, starting with one mile and increasing by ¼ mile every workout thereafter. After a few times, this was no longer so burdensome.

            About 10 days later, I found myself experiencing my first adrenalin rush in months. While on meds, stress simply made me ill.

            Coincidentally, my first post-treatment follow-up visit to my doctor fell on the anniversary of my diagnosis, the day I had received a letter stating that I had tested positive for Hepatitis C. . . .

 
 

            I recall my absolute shock and sickness I had experienced as the result of this news. I knew nothing of this ailment, and the information I found was very ambiguous. The malady impacted people in different ways, ranging from a rather benign experience to severe liver disease. Moreover, the treatment affected people in varying degrees of nastiness, and the standard of care at the time was only about 50-percent successful.

            The entire year would be devoted to fighting the Hepatitis C Virus. This involved a fact-finding, self-educating phase. I joined a support group. I searched the Internet. Then I discovered a new generation of drugs was on the horizon, awaiting FDA approval.

            Following my diagnosis, I was hesitant to endure the grueling 48-week treatments – known for severe side effects – for a mere 50/50 success rate. All indicators, such as liver enzyme blood work, CT scans and my fitness level, led me to believe my liver had experienced no ill effects from the ailment. A biopsy, however, revealed that the virus was, in fact, at work in my body.  I was pushing 50, and I was concerned that the severity of this damage would increase exponentially as I aged.

            I chose to start treatment for this and other reasons. The new protease inhibitors promised higher success rates and shorter treatment durations. I had a good insurance plan (and these drugs were bleeping EXPENSIVE). And things seemed to line up just right in my professional life to allow this major undertaking.

            The drugs came. Boceprevir, which strangely took on a Hollywood pseudonym of Victrelis, was approved on Friday, May 13, 2011. I was the first on my block to sign on.

            So finally, after much anticipation and anxiety, I took my first injection of Pegasys (Pegylated Interferon α-2a) on July 2, 2011. I would do this every Saturday for the next 27 weeks. I also took two doses of Ribavirin daily, 600 mg in the morning and 400 mg in the afternoon. At the start of treatment week 5, I added Victrelis (Boceprevir), the newly approved miracle drug, to the cocktail, choking down four capsules every eight hours without fail.

            People’s experiences with these drugs differ remarkably. Some are affected with mild side effects all through treatment; others are overwhelmed by them and must either take leave of work or abandon the effort altogether. Some folks require “rescue drugs” to enable them to continue.

            On a nastiness scale of 1 to 10, I would rate the bulk of my experience at 4, though treatment weeks 15-19 would be more deserving of a 7. My major side effects were anemia, skin disorders and depression. Other troublesome maladies, in no particular order, included chills, fever, irritability, insomnia, forgetfulness, low frustration threshold, queasiness, dysguesia (bad taste in mouth) anal-rectal discomfort, bowel irregularity, scalp irritation, hair loss, frequent nose bleeds, and proneness to minor infections.

            Regretably, the experience took quite a toll on my family. My wife grew so tired of my mood swings that she started to work weekends to avoid my injection-day hangovers. I kept her up at night during my frequent bouts with restlessness and the occasional “I want to blow my brains out” pleas for help.  Nothing got done around the house, at least not by me.  Nevertheless, I would have never gotten through this thing without the support of my wife and daughter.

            Fortunately, the drugs worked and worked quickly. As the result of early negative lab results, I became eligible for the shortened treatment option of 28 weeks, as opposed to 48. I took my last dose of Boceprevir at 10 pm on Friday, Jan. 13, 2012. Coincidentally, I finished the Friday the 13th drug on Friday the 13th.

            So . . .

 
 

            . . . my first post-treatment follow-up visit to my doc occurred exactly one year after receiving the infamous letter. My doc congratulated me on my results and was happy I was feeling better. He explained the follow-up procedures to me and bid me well.

            Of course, I needed to see my nurse, Maureen, before I left. I wanted to show her how good I felt. She happened to walk out of her office as I approached and the recognition was immediate: “Well look at you with a bounce in your step!” she proclaimed. She had always said that she could tell a lot about a person’s state of health just from looking at them. I knew this was the case here. “It’s good to see you smiling and laughing again. There were times you were just miserable.”

            I owe a lot to Maureen’s support. She was the one who really made things happen in during my treatment. It was an interesting dynamic, really. I’d discuss things with Maureen, make a decision and she would get approval from the doctor. She was the handler – the troubleshooter. This arrangement worked out beautifully.

            A few days post-treatment, I happened upon an online HCV support group with membership from all over the world. The site has a theme equating our common cause of defeating the virus to slaying the dragon. Most folks’ are represented by medieval avatars, such as knights, warriors, lords, ladies, sorcerers and witches. Like my in-person support group, these folks are extremely well-informed. They are very supportive and, naturally, understand the disease and its treatments better than the unafflicted. People of different genotypes, at all stages of the progression, having experienced most treatment regimens with varying results are represented.

            I really wish I had found this site during treatment; nevertheless, my experience, strength and hope can be useful to others. After all, I had accumulated a lot of information during my year’s obsession with the dragon. I am among the first past the finish line on one of the new drugs, and I am convinced this is all behind me. The next logical step is to help others.

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4 Responses to “The Year of the Dragon”

  1. In searching for narratives of others recently done with treatment, I ran across your blog. Hi, i just finished 28 weeks of victrelis on 1/20. It was interesting to read your blog. I haven’t felt much different, for better or worse. But it’s only been 1 week so far. I can tell the metallic taste is gone. I hated that. Treatment wasn’t terrible. I had a good response too. I was undet at after 2 weeks of victrelis and on every pcr since then. Got my fingers crossed. Good luck!

  2. So happy that you are finished and looking forward to focusing on the family. I for one know how difficult this treatment was and the toll it took on you physically and emotionally, you are one tough cookie. It does make sense for you to help and support others going through this. Thank you for this brilliant blog, can’t wait for more to come. I Love You, Muhhhhh!

  3. Congratulations on the end of your treatment and on your 17th anniversary. Since you are feeling so much better, it sounds like you need to do some major sucking up to your wife and daughter. lol Maybe a family vacation. How fantastic to have such a great family to help you to get through your ordeal. Wishing you continued good health!!


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