Barb Cardell is used to talking about sex. But since the 33-year-old was last profiled in POZ (October 1996), both her safer-sex outreach work with the Boulder County AIDS Project and her own treatment have gone through some transformations. She lives in Boulder, Colorado, with her HIV negative husband, Tom Bogdan, and her (female) dog, Max. In her perky-as-hell manner, Cardell recently strayed from the topic of titillating latex tips to clue me in to what life in the Rocky Mountain State can be like when you’re dealing with going back to college, taking 52 pills a day and facing the unmentionable reality of “failing” treatment.
How has your work as a safer-sex educator changed in the past year?
People’s concern about HIV has dropped, and I’m seeing the effects of that. I used to be able to go into a sorority and make a strong case for safe sex. Now, people feel there’s less need to be concerned about getting infected because there’s supposedly all these wonder drugs out there. Well, they’re not wonder drugs, and it’s not a cure—it’s really scary. So I try to make a case for that when I speak. I bring my little suitcase with all the pills I take and show everyone.
Let’s talk about your treatment.
I go for the broad scope. I’ve been doing interleukin-2, which is actually a cancer drug that’s designed to rebuild your immune system, and I think it’s helped my T-cells. It’s a very strenuous treatment, and fortunately I have the financial luxury and the time to do it. Every two months I go and get a shot for four consecutive days. It triggers your immune system, and you come down with what is basically a nasty flu. So I stay in bed for the entire four days. And you puff up—it’s like PMS times 10. But I went from having 400 CD4 cells in June 1996 to 880 in October 1997.
As far as AIDS medications go, I’m on ddI, d4T and Viracept (nelfinavir). Plus Zovirax (acyclovir) for herpes. I’m also starting hydroxyurea. It’s another cancer drug—this one a pretty toxic chemotherapy—but it’s supposed to increase absorption of ddI. PWAs have gotten to where we’re taking drugs to help our drugs now. Viracept and ddI give you “gastric upset,” as they say so politely, which for me means explosive diarrhea. I try to control it by eating a lot of oatmeal and white rice. I don’t need any more drugs—I already take 52 pills a day.
What other pills make up that huge total?
I take all sorts of supplements, including vitamins C and B-complex, calcium and magnesium. I get Composition A, a Chinese herbal immune-booster, from my acupuncturist. I also have frequent massages, and I work out five times a week. Overall, I feel pretty good. Sometimes I think, “Why am I on these drugs?” since I feel OK.
I’ve been on a million combos since I tested positive four years ago, but I’ve never had an undetectable viral load. (It’s currently 783.) All everyone talks about is their undetectable viral loads, but how does that make the rest of us feel? Like a big fat failure.
How is your nontreatment life?
I’ve gone back to school, at the University of Colorado at Boulder. I’m studying political science and trying to get my GPA up—last time I went to college, I graduated in 1986 with about a 1.8! I have a whole group of HIV positive friends who are all going back to school. I think it’s really important for PWAs to keep expanding, not just in medicine but in life in general.
But I’m also very concerned about what’s going on in the community. Some people are doing better on the new drugs, but some people can’t take them, and that’s incredibly difficult for everyone to deal with. People will ask how you’re doing, but if you’re not well, they don’t really want to hear about it. Everybody wants to believe that we’re all gonna make it, and the reality is that people are still dying. So what are we saying if we talk about people failing drugs? Isn’t it the other way around? How excluded are we making people feel?
How do you respond when people ask how you are?
I tell them. I don’t worry about whether or not they can handle it. It’s all about being honest. People don’t want to hear it, but I have to confront them and say, “This is not all wine and roses.”