Happy Birthday, Little Sister

Two days before her eighteenth birthday, I gave my little sister good news about my health. Poor kid. She’s grown up with all the anxieties and fears of having a sister with a chronic and sometimes deadly illness. Since she can remember she’s heard murmurs of my hospitalizations, my setbacks, not so long ago I found a note she’d written to me at the age of six, her unsure, uneven, large printing on a Lisa Frank card, it said “Mom says you can’t open doors anymore. I hope you feel better.”

Camille was referring to how my lupus flares often manifest in the freezing and swelling of my joints—what led my friends to begin calling me “Lobstergirl” as periodically I’d wake with two claws; my hands transformed into thumb and a useless pad of immobile fingers.

I, of course, wish she hadn’t known this. When I could, I tried to shield her. My face was always the bravest around her. When I ended up in Albuquerque’s emergency surgery and M-ICU with little chance of survival, I made it clear that Camille was not to come to the hospital, was not to visit my room. But still she knew. She saw the worry and fear of our family, she overheard the details, and later saw the neck wrap bandages and was told to tiptoe around the house as I recovered.

So yesterday evening, in a moment that I think only she and I registered, she cheerily and cautiously asked how my chemotherapy went. There were other people in the room, but direct to Camille I explained that there was good news—that my white blood count has dropped significantly (something we’ve been trying for since February) and more importantly, the last echocardiogram showed no fluid around my heart. For the first time since January, my heart scans are clean. Camille and I both gave each other faint smiles and she teared up a bit. It is, I think, the first time I’ve reported news of my health to Camille that is good. A victory I never knew I yearned for.

The docs also said I have to be on chemotherapy for a full two years—that’s with my six months time served. So, eighteen more months of this although I had planned on a tough Spring and Summer and then the chemo would be all over by the time we moved. Instead, I will find a new chemo ward in Providence, or Providencia, as my grandma melodiously says, and there will be a new cast of characters—East Coast doctors, residents, interns, nurses, fellow travelers of the slow drip. Maybe in early 2011, when I finish the Cytoxan and Camille is nearing twenty I can give her more good news. Maybe there will be good news some places inside those eighteen months.