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

Tears for Prometheus

My treatment has been the ultimate exercise in delayed gratification. I religiously take drugs that make me feel like crap because I am told that they will eradicate a previously asymptomatic malady that could one day wreak havoc on my liver.

            The only thing I have to attest for the success of this effort is the numbers on a lab report — my viral load — decreasing exponentially: from 6,700,000 to 4,300 down to 2, then finally down to zero. I do not feel more healthful, experience any semblance of a rush of vigor, as a result of this progress. Instead, other lab report numbers, correlating with my physical decline, slip gradually downward: hemoglobin – down, hematocrit – low, absolute neutrofils – ever down, and white blood count – dangerously low. Having only a few months ago trained with some of the most extraordinary endurance athletes in the area, I have since been reduced to the state of an anemic wimp. I have sacrificed my fitness for my long-term health.

            For the benefit of the uninitiated, I recap . . .

            A few weeks after donating at a blood drive at my daughter’s school, I received a letter informing me that I had hepatitis C, a chronic, viral infection that attacks the liver, often leading to cirrhosis and liver cancer. Frequently, the disease goes unnoticed for 20 to 30 years because the organ can function normally despite having significant damage.

            I was referred to a GI/Hepatologist who ordered numerous tests, a CT scan and a liver biopsy. I also discovered a hepatitis support group that was led by a nurse from my doctor’s practice. There, I met up with similarly affected others at various stages in the diseases progression and learned much. I did too much research and learned more. The hep C community, as it turns out, is a well-informed lot.

            In May of 2011, the FDA approved two new drugs, protease inhibitors, which would improve the cure rate from 50 percent to the neighborhood of 70 percent for those of us infected with the genotype 1 strain, the most treatment resistant variety. An additional benefit was the prospect of cutting treatment duration in half – from 48 weeks down to 24 – if early eradication of the virus had been achieved.

            These advances made undertaking the grueling treatments a serious consideration. Furthermore, the completion of my graduate studies, a reduced workload and anxiety about the future of insurance led to my resolution to attack the silent killer within.

            So, after an extensive training session with a nurse, I started treatment on July 2, 2011, taking the first of what would be many injections of Peginterferon Alpha-2a in the evening. This followed with twice daily doses of ribavirin.

            The first month wasn’t horrible. By the third week, I was tolerating the injections, known for flu-like symptoms, with minimal side effects. The day-after was nearly always marked by irritability and fatigue, not dissimilar to a “dry hangover.” Typically, I felt normal about three days a week, which felt like euphoria in comparison to the norm. Keep busy and drink lots of water was my mantra.

            However, I noticed an effect on my running performance as early as three days into treatment. Two weeks later, I ran an annual Moonlight Run 10K, only to finish a full 20 minutes slower than my best time. My bloodwork confirmed by the end of Treatment Week 4 that I was officially anemic. My blood was incapable of delivering oxygen throughout my body efficiently. The good news was that my viral load had already taken a 3 log drop!

            At day 29, following the required four-week lead in, I started on Boceprevir, the newly approved protease inhibitor, the long-awaited, hard-hitting miracle drug. Because of the rather short half-life, it needed to be administered around the clock, every eight hours, without fail. Minimal deviation from this routine would give the virus sufficient opportunity to mutate, thereby rendering the drug ineffective. So I set an alarm on my phone to go off every day at 6 am, 2 pm and 10 pm, at which time I would choke down four red and yellow capsules strangely marked “314.” I wondered if everybody got customized pills bearing the colors of their alma mater with their area code emblazoned upon the jacket, or if this was merely a coincidence.

            By the second dose of Boceprevir, I became aware of a bitter chemical flavor in my mouth. This distortion in taste, dysgeusia, was one of the known side effects that seemed rather insignificant during my reading.  However, the seemingly omnipresent, foul taste proved to be an unexpected, major irritation.

            On the up side, the drug gave me a slight groggy feeling that combated the fitful sleep I had experienced during the two-drug lead-in phase. By the end of TW 8, my viral load was 2 – that is, 2 viruses per ml of blood – a significant drop from my enormous baseline of 6,700,000. My blood counts, however, continued dropping.

            The real trouble, however, started in my fourth month. Whereas early on I would have two bad mornings per week, marked by fatigue, queasiness, bowel disorders and general difficulty getting out of the house in the morning, I was beginning to feel this way for four- to five-day stretches at a time. Additionally, as my fitness level diminished, my “turnaround time” on my injections – the time it takes before I begin to feel normal – increased from 18 hours to 36.

            Then at TW 14 came the rashes and skin irritations. I classify them into three categories: 1) little red bumps. These started off on my torso, but now mainly reside on my arms. They itch, but are relatively benign. 2) Pseudo-sunburn. Most of my torso is scratchy and irritated and, like sunburn, pressing on my skin with one’s hand leaves a briefly lingering, white impression. At times, the itch is intolerable and the creams and lotions I’ve tired produce, at best, temporary relief. 3) Eczema, flaky, dry skin. This is limited to my lower legs. Unlike the other maladies, this condition will become bloody and irritated if scratched. Additionally, my scalp is itchy and my colon is so dry that it sometimes feels like I have bugs up my ass.

            Not surprisingly, my episodes of depression have become more severe. On occasion, I find myself driving around aimlessly in tears as some form of therapy. During one such excursion, the tribulations of the mythological titan Prometheus popped into my head. Much to the displeasure of the gods, Prometheus gave fire to ancient man to promote his cultural development. The gods chained Prometheus to a rock as a punishment for his transgressions, and his unfortunate fate was exasperated by an eagle dropping in every morning to feed upon his liver. To my embarrassment, tears rolled down my cheeks from beneath my shades as I drove around one Saturday afternoon thinking of this gruesome image.

            Surely, I must be losing it! I always felt that my achievement of sanity was the result of a 30-year battle, comprised of meandering pathways through significant challenges and experiences. Now I feel it all unraveling.

            A spiritual advisor of sorts recommended that I string together a chain of paperclips, each representing a day of treatment that remains. I was instructed to pluck away one paperclip at the end of each day. The visual of the shrinking chain was supposed to give me hope, provide me with a light at the end of the tunnel.

            So one sleepless night, to escape the torture of head-to-toe itching and burning, I went downstairs and began hooking together about 10 ½ weeks of paperclips. The motherfucker ended up being more than eight feet long! I may as well have constructed a giant, insurmountable mountain.

            I have since obtained some relief from the rashes. After progressing unsuccessfully through the over-the-counter medications, the doctor treated me to a prescription lotion that has significantly relieved my symptoms. I now wash with dye-free, perfume-free laundry detergent and started using Selsun Blue for the itchy scalp. Additionally, I’ll rub in my daughter’s African-American Scalp Oil about once a week, which will help the cause for a few days. I also run a humidifier in my room as I sleep as yet another strategy to combat the Dry, Itchy Hell that consumes me.

            The prospect of a drug-free day always brings tears to the eyes. At one point in this grueling regimen, feeling “normal” was equated with euphoria. Those days are now few and far between. I want my motivation back. I miss my vigor and look forward to once again being able to test the limits of my body’s performance. I want to eschew my predictable, boring routine and be able to leave home without packing meds, unconcerned as to when I will return. I want what little patience I had returned to me, giving me the ability to complete frustrating projects around the house without losing my mind.

            Surely life will be changed irreversibly for the better when this is all over.


One Response to “Tears for Prometheus”

  1. M…, I got to know you a little bit when you were in the band GRX. I have read all of your blogs and I am amazed about how much you have accomplished in your life. The last time I saw you was the point in which you had begun donating your blood for money. Remember how far you have came and how much hard work you have put into being successful. You have created a wonderful life for your wife and daughter. Stay strong, and lean on your family. With time and patience I am sure you will be back to being healthy and enjoying your runs again. Best of luck to you and yours!

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