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July 19, 2009

No more Valcyte!

Terri has done the seemingly-impossible and has completed six months on Valcyte.

A quick primer on Valcyte: a powerful antiviral used mostly to combat cytomegalovirus (CMV) in AIDS patients. Has been shown to be effective on some people who have CFS (Chronic Fatigue Syndrome), which can be caused (in part) by the human herpes virus 6 (HHV-6). Very toxic and nasty.

Valcyte can have a number of not-fun side effects including: lowered immune functioning, intense mood swings, nausea, severe body aches, lowered liver functioning, fatigue, etc. Which are all also symptoms of CFS. So, basically, it’s like having TWICE the fun. Hoo boy. For six months.

But anyway, Terri passed all of her blood tests (you have to have liver-functioning tests for the first few weeks, then monthly for the rest of the time) and somehow — somehow — managed to stay on it the full six months. This was not fun for anyone in this house. But, since Terri is one of the strongest-willed people I know, she persevered and was rewarded last month with a slight upswing in energy and stamina. We’re hoping that this means that it had some effect. The positive effects can keep growing for a full year after you take Valcyte, since the body needs to repair itself after six months of such a toxic drug (similar to what happens when you finish chemotherapy).

So now what? Well, today we are resting, since we are both exhausted. Maybe we’ll attempt going to a movie later. Or maybe we’ll go to Best Buy and pick out some kind of gadget as a reward. But mostly, I think today we are laying low.

But then starts phase-whatever (I have lost track of what phase we are in with all this). Healing. I have to take a good hard look at our diet and the chemicals we use in our house, since what we need is clean, clean, clean. As few chemicals and toxins as possible. We’re already vegetarian but we could eat more organic foods. We already clean with non-toxic cleaners, etc., but we could probably take it a step farther and do without a number of other chemical-laden items in the house.

So, reducing the toxic load. And then working on all the rest of it: Stress. Stretching. Getting sun and fresh air. Filling our minds with good things.

Can I just say what a trooper Terri was throughout all this? This was NO FUN for her. Every time she wanted to give up, she somehow pulled a hopeful rabbit out of her hat and soldiered on. We sometimes had to remind ourselves that we were not dealing with the usual circumstances and to be extra kind and forgiving to ourselves and each other. Hard stuff has happened in the last six months, but somehow we made it.

I don’t know what the next six months holds, but it’s going to be better. I know it will be. I’m sure there will be hard times (there always are) but this gigantic hurdle is out of the way. We go see her doctor on Thursday and we’ll know more about next steps then. If you’d like to stay abreast of her progress, you can follow her excellent blog over at CFS Warrior.

However, tonight is a night for celebration (with or without Kool and the Gang). Maybe some favorite take-out, a favorite movie, some pie for dessert. Maybe a drive in the woods. Maybe a trip to the gadget store. We’ll see. However, I for one am thrilled and relieved that we have reached this milestone!

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