Sunday, July 19, 2009

Celebrate!

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!

5 comments:

Stefanie said...

Oh Daphne, this is wonderful news! Terri has been a trooper but so have you. You both deserve a celebration.

Tammie said...

yay! im happy for you guys. ive been reading terris blog so im aware of what a struggle its been. im definitely going to keep following it. i love how educated she is about whats going on with her body. shes definitely taking her health into her own hands, which i admire.

i'll be interested in seeing how you take it up a notch as far as the chemicals in your home go. i've been on somewhat of a war path as far as that goes lately. not only am i tired of giving money to companies, but ive noticed that certain cleansers/chemicals/smells effect my allergies much more than they used to. i practically live on allergy meds that, depending on what day it is, either make me tired or wired. its a frustrating way to live.

do you read the blog Angry Chicken? a week or so ago she mentioned a book called Make Your Place. i bought it and its awesome. its filled with recipes for making your own everything---house cleaners, beauty products, etc...i highly recommend it. plus, its super cheap, like $5.

Daphne said...

Stef: thanks! It has been a struggle. We're going to try and do something fun this afternoon.

Tammie: I do follow Amy... I will check out the book! I have one called "Clean, Naturally" that's kind of the same idea, but I bet the one Amy's talking about is easier.

Kate said...

Oh, hell, throw in the Kool and the Gang. Congratulations!!!

Nymeth said...

I'm very happy for you and Terri! May the next six months bring you plenty of good things!