For the last couple of weeks, I’ve been coasting along, up and down, sick and not, emotional, etc. It’s been fine, doable, no big deal, albeit I am not used to being ill, low energy, and a layabout. Sometimes I’ve actually enjoyed the fact that I don’t have to move or think of anything I have to do in this weird condition. An urgency to my life has given way to discovering a new rhythm of my life – and so the days have passed pleasantly enough: researching the colonial period in Virginia and imaging those relatives to life, moving from sofa to computer, client work, Alamos women’s book work, Netflix interludes, neighborhood walks, finding shells for Grace’s sea menagerie. Meds-meds-meds-shots-blood tests-chicken livers – fat grams -blah-blah-blah. Keeping in touch with friends and family and receiving support.
At 4 weeks in, I had my first viral load blood count. The Dr. told me it might go from the initial reading of 3,600,000 parts per whatever to zero parts, in the first four weeks. I thought cool that would be exciting. I did notice early into the fifth week – and before I got the viral load results – that two side effects of the disease, rash on my lower legs and eczema on the back of my head had disappeared altogether. So I have evidence and feel confident the disease is either completely gone or nearly so.
I met with Cindy early this afternoon in Monterey to pick up a blood test slip for an iron study so the insurance will give me the shots I need to self-administer to perk me up and stave off any serious anemia. She called me into her office, sat me down, and said, “I have some maybe bad news for you.” I couldn’t imagine what it would be as I was having my best day so far. “Well,” she continued, ” your viral load came down to just 444 parts, which sounds really good, but the rules for this particular treatment are that, if they don’t come down to zero parts after four weeks of treatment, instead of doing just the 24 weeks, you have to do the 48 week treatment – DOUBLE TIME!” Instead of finishing July 3, I’ll end up somewhere around Christmas.
That was about nine hours ago and those shocking thoughts continue to pop in and out of my consciousness. On the one hand, I’m so demoralized, I’m ready to throw the towel in. On the other hand, I’m actually happy about doubling the time–if you can imagine. The urgency with which I was concentrating on getting to the end just lifted! just like that! and told me I can relax and will just do it for however long it will take – A WHOLE YEAR!
It’s interesting to watch the play of emotions within me. I know that I’m going to do the 48 weeks – no question about it – and it will be done one day at a time as I’ve already been doing. But part of me is rebelling and I just have to go with those feelings and watch them play out. I’m honoring the grief; I’m still in shock too. I know that as this plays out, it will have the meaning I decide to assign it.
There’s more – something I had heard before but gave no credence to. If the viral load doesn’t go to zero with twelve weeks of treatment, the treatment is discontinued and considered a failure. Cindy says there’s no way to predict what will happen to my lingering 444.
I do feel more sober tonight. I’m staying with Lois in her new home. She made a delicious chicken dinner, with homemade brownies, and I’m comfortably tucked into her 100% cotton robe (she heard I couldn’t wear my cozy synthetic robe). So, as Dr. Bill, says, “you’re all right right now, aren’t you?”
Yes, that’s the only thing isn’t it? The power of now will see me through and I’ll make more progress on my book than I might otherwise as well. I’m thrilled about that.
Tomorrow a Julia massage and a Dr. Arnold acupuncture treatment. I had appointments booked every two weeks but will lengthen the time between now that the overall treatment time has doubled. Sally Higgins is riding back with me to Capitola tomorrow, to spend a few days with her son and his family there.
Cie la vie!