Friday, June 28, 2013

My Big Secret (cont'd)

I just want to clarify. That last post wasn't meant to say "I thought I had some fake disease, but I actually have cancer." I believe that Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis as it is known in the UK) is a legitimate illness and one that I have been suffering from for a long time. I haven't worked in three years, I've had to face the fact that even if I wanted a family, I could never afford one (financially or in terms of physical energy). I've kept my spirits up by playing drums in a band I loved even though it sometimes meant being sick for a couple days after. People have accused me of being lazy; fuck them. I've put more work into making my life what I want it to be than a lot of able bodied chumps have. I've lost friends and relationships over this illness. But I've also found out who really cares. Part of how I fell in love with Paula is that she never questioned my sickness for a second. I love her, she is an amazing person and I'm lucky to have her. I went off and on various medications, some of which made me very ill. I was desperate to be well. I still am. At points I was jealous of people with HIV because at least everyone believes they are sick and they know what to expect. The point being, that the last 3-5 years of my life have been hellacious and anyone who counts me as a friend must understand that.

With that rant out of the way, I will say that I felt a sense of relief when I found out I have cancer. I finally had something that everyone could understand and sympathize with.

How CFS/ME and cancer relate is just beginning to be uncovered. When I first got very ill, my doctor tested the levels of Epstein-Barr Virus antibodies in my blood. It was literally off the charts. Most people have EBV antibodies, it is the virus that causes mono. But for my levels to be so high points to something else going on. There is a known correlation between EBV and Burkitt Lymphoma (not the one I have) but the relationship is likely complicated.

Still there has been some promising research out of Norway in which a double-blinded placebo-controlled study showed a 60% improvement rate amongst CFS/Me sufferers who were given the chemotherapeutic drug Rituxan. The evidence was so strong that the Norwegian government apologized for not taking CFS/Me seriously.

So there is a possibility that I will feel better than I have in half a decade after chemo. That thought is keeping me going. So if you'd like to join me inside that hope, I would really appreciate it.

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