Ruminating Before The Retest

I retest tomorrow to determine what my viral load is and, after the study governors review the numbers, find out whether I am bounced off treatment. Until the results come back I’m just drifting along in an indeterminate state. It’s like the experiment in quantum physics where in one instance light behaves like a particle, in another it behaves like a wave. If I’m back to undetectable, I am carried along wavelike in the tide of treatment. If I still have a detectable viral load, I am tossed up particle like onto the shoreline to watch the ocean go by.

As I wait, I’ve been thinking about what I think about the disease. In journalism they ask the questions of Who, What, Where, When, How and Why. As I mentioned back in my very first post about finding out you have the disease, the who, what, when, where and how tend to fade into the background before the fact of being infected with the disease. The question of why remains, but it’s problematic in the extreme to try to come to an answer to that one.

If you believe in an entity or mechanism or power in the universe that somehow keeps track of and balances positive and negative energies, good and evil or grace and disgrace, you may have an answer to they question of why within your belief system. I do not believe in a universal balancing mechanism aside from one that keeps the second law of thermodynamics by conserving energy. I do not pretend to know what is going on at the level of why our universe(s) is the way it is. Most of the models that physicists use to attempt to capture the functioning of the universe have multiple dimensions in them that are beyond are ability as human animals to comprehend directly. Something must be going on in those dimensions; maybe there is some sort of explanation there, maybe not. If anything, I personally believe in a cosmology based on Teilhard de Chardin’s idea that the increasing complexification of consciousness eventually will result in the creation of god. But we are not there yet.

Regardless of the answers you may find for the 6 questions, you are eventually left with only the fact that you have the disease. This fact has a number of consequences. The disease will likely progress in the severity of damage it does to your liver. This may mean you will get cirrhosis and need a new liver. You may or may not qualify for a transplant. Even if you get one, it may not “fix” the disease. The disease may also cause liver cancer. If so, you can also try for a transplant and have a reasonably high survival rate. If you don’t get a transplant, you will likely die within five years. One of the effects that the fact of having Hepatitis C brings home in a remarkably clear way is that we all have an expiration date.

To put the date off a bit, you can chose to fight the disease, but there are no guarantees that treatments either inside or outside traditional western medicine will effectively clear the virus from your body. Methods to manage the symptoms of the disease and attempt to attack the virus that are available outside the traditional medical establishment can run up significant costs in both time and money. Acupuncture, massage, herbal supplements and nutritional consultations are not inexpensive especially when considered over a period of years. There is also no guarantee that they will prevent the progression of the disease. Treatments through traditional medical regimens are both monetarily costly (though this can be mitigated by insurance, participation in research trials, or compassionate use protocols) and physically costly. To many, the treatment is difficult enough that they either cannot complete it or never start it at all. There is also at this point only about a 50-50 chance that the treatment will clear the virus from your body if you have the most common North American genotype of 1a.

Another corollary of the fact that you have Hep C is that you are now someone who can be a hazard to other people. It is certainly at a small level if you are careful how you interact physically with people, but it is a fact. The idea that you are capable of giving someone else this disease just by exchanging a tiny amount of blood is a sobering fact.

Here are my facts: I have the disease. It has gone symptomatic. It affects my quality of life. I have reduced concentration, forgetfulness, depression and fatigue. I can choose symptom management and non-traditional methods to attack the virus. I can choose to attack it aggressively with the methods developed by medical research. I personally chose to attack it with an experimental drug therapy regimen. So far it has bought me about 16 weeks of relatively virus free time for my liver and the knowledge that I can handle the rigors of the treatment regimen. Whether or not I continue on treatment in this study, I will continue to attack the disease aggressively using conventional medical protocols. My wife tells me that I can be very determined when I get my back up over something. I certainly hope she is right.

A final fact that millions of people with this and other communicable, serious diseases have discovered is that having this sort of disease changes your image of yourself at a fundamental level. It has certainly changed mine.