My Psychology and Hepatitis C Treatment Part 2
The biopsy was, correctly, a simple enough procedure. After which, I felt a little silly for all of my concerns. But its results indicated that cirrhosis had caused ‘moderately severe’ damage to my liver. The cirrhosis and high levels of all the wrong things in my blood tests prompted my doctor to want to begin the yearlong medication treatment quickly, a combination of interferon, commonly used with cancer and HIV patients and ribavirin, a medicine that enhanced the effects of the Interferon. The success of the ‘Combination Therapy’ was limited (only about a 25% success rate), but it was the only treatment available.
As time passed and I began to understand Hepatitis C, my concern changed to how I was going to explain to my sons that I might not be around to see my first grandchild or even to see my youngest son graduate from college. How could I tell them that, after just losing their mother, they could possibly lose me too? I tried to present a strong and stable father figure for them, while I collapsed inside – – If it didn’t work, they were kind enough not to let on…
The first month’s supply of medications arrived by FedEx and I started the regimen, injecting the interferon into my body three times a week with a syringe that looked like a fountain pen and taking the ribavirin, in capsule form, twice a day. The side effects for me turned out to be mild, but still included hair-loss, nausea, fever, body aches and other ‘flu-like’ symptoms, blurred vision, depression and mental confusion (my sons term being ‘brain fog’). I read the warnings that cautioned of attempted suicides and of some ‘completed suicides’; I just hoped that I would be able to stay strong enough to continue to work full time and support my family while I tried to save my life.
The aches and ‘flu-like’ symptoms were controlled with other meds, blurred vision was tolerated and I adapted to the ‘brain-fog’ with a heightened level of concentration for even the easiest of tasks. The depression was controlled by anti-depressants, but the mood swings would often put me at odds with my children. On the occasions when I became unreasonable, one of them would ask, “Dad, do you really mean what you just said?” and usually I didn’t and would realize it. My teenage sons became the rational adults as we adjusted to life without their mother and with me on drugs. However, our need for each other drew us closer together and soon we were able to laugh when I ranted about the dishes not being done. Only to be reminded that it was my turn to do them.
The next year of treatment was a physical and emotional roller coaster ride, sometimes scarier than a theme park’s finest offering. Each interferon injection was followed by hours of heightened aches and pains. I learned to schedule the medications so that I slept through the worst of it, injecting myself right before bedtime. My sons adapted to my schedule and on those nights, they would quietly entertain themselves. Scheduling an injection on Friday night allowed me one of my days off work (Sunday) to feel partially normal and, then, Sunday night the pattern of sick and irritable would start all over again. My coworkers were saints and tolerated my workweek mood swings with patience and understanding, sometimes walking away rather than argue with my obviously, unreasonable notions.
I remembered how, when I lost a leg in a motorcycle accident twenty years before, I thought it was the end of the world. Yet, I stubbornly proved myself wrong and today I strap on my leg with the same thought I use to tie a shoe and laugh about the awkward situations a prosthetic leg has gotten me into. I wanted to believe that I could do the same thing with the loss of my dear Josie and my deteriorating health. My way of coping was to acknowledge the effect that events had on my life and then move on. But this time, there was more than just the sanity of a young motorcyclist at stake. This time it wasn’t just about me; I had my two sons and a Basset Hound named Twiggy to think about.
The year of medications didn’t work and although blood levels dropped while I was on the drugs, soon afterward, they rose to levels prior to treatment. Now, over a year since my last treatment and with demand for the medications rising, I am on a waiting list for the second yearlong round of therapy. This time, it will include the most recent advances in treatment, called ‘pegylated’ interferon; a form of interferon that has been molecularly changed so that it is time-released, requiring just a single injection each week. The side effects some say are worse, but some reports say the response rate is higher , so I’ll defy logic once again, and make myself sick to make myself well.
I’ve discovered a lot about myself over the past two and a half years. Knowing I may not have a long life, I strive to make it a good life. I have rediscovered the things that are important and unearthed patience and compassion that I had buried in a need for survival a long time ago. Now, my survival requires that I put my heart out in front and let it be my shield. Emotionally, I stuck it out. That is the only thing I can do.
These days, my priorities have changed and I no longer worry about the garage getting cleaned immediately or the floor being vacuumed daily. I live each day for its self and remind my sons that I love them more often than I ever did before. The grass can grow an extra inch while we get to know each other and share our lives together beyond the parent and child, becoming best friends as we do so. And I very seldom forget which days are my days to do the dishes…