September 24, 2012
Rae Lewis-Thornton's list of past treatment regimens reads like a history of HIV drug development -- because it is. In the next segment of this multi-part video interview, Rae shares her experiences with "all the nucleosides" -- starting with AZT -- and the mixed blessing of hope and crippling side effects that was the earliest protease inhibitors. Watch the other videos in this series.
So let's talk about the medicine. Your regimen is, has been, extensive.
You were diagnosed in '87. You started AZT (Retrovir, zidovudine). Everyone knows that really wasn't helping people. So, by the time the protease inhibitors came around in the mid-1990s, where was your health at that point?
I started AZT, and when I made a transition to AIDS, we upped the ante to 3TC (lamivudine, Epivir), ddI (didanosine, Videx), d4T (stavudine, Zerit); I went through all the nucleosides. That was really the maintenance. That was the thing that was barely keeping me alive. Along with that was this really extensive prophylactic care -- trying to prevent PCP (pneumocystis pneumonia), to prevent MAC (mycobacterium avium complex), to prevent yeast infections. Along with the nucleosides, you had to take this whole host of other medications.
By the time protease inhibitors came, my T-cell count was 8; my viral load was 400,000; and I was a size 0. I had had my third bout of PCP, because I'm allergic to Bactrim (co-trimoxazole); I'm allergic to atovaquone (Mepron), which is the freaky yellow syrup that looks like yellow paint; and dapsone (Avlosulfon). They just didn't work.
I started to take Norvir (ritonavir) as my first protease inhibitor. And it was 12 pills, twice a day. So I took 24 pills of ritonavir in addition to the two pills, I think it was 3TC, and whatever else it was that I took.
Did you think at this point, "I'm going to die?"
Oh, of course.
So when doctors said, "Look, we have these pills," were you just kind of like, "Whatever. I'll take them"? Did you have hope? Had you heard good things about these pills?
I had no hope. I had deliberately stayed away from drug studies because HIV meds are approved very quickly, and I felt that approved drugs were somewhat still experimental; and I didn't want to do that. I had taken saquinavir (Invirase) and it made me crazy. It made me dream about wild and freaky things. I'd known some people who had been in some studies with the protease inhibitors, and they still didn't do as well. But now, in hindsight, I understood that those people were not complying with their treatments.
So when my doctor prescribed ritonavir ... it made me so deathly ill. Like, it made me sick. There were days where I could barely raise my head up from the pillow. It made me shit on myself, and vomit; and it just made me sick. I mean, there were days that we had to pull off the side of the road so I could throw up. I mean, I remember getting to a school one day to speak, and the principal met me at the door. And I was like, "Can you bring me some crackers from the cafeteria?!" I was crazy. Like, I need to get this feeling out of my stomach. I couldn't imagine something that made me feel so freaking bad would actually be good for me.
There was a point where I wanted to quit. I spent, like, six, seven hours on the bathroom floor -- throwing up, pooping, throwing up, pooping, throwing up, pooping -- and once it had passed, I took a bath and I put some wonderful body cream on my body and fresh PJ's, and I went to the telephone, all proud, and called my doctor. And I said, "I quit! I quit! Because the quality of my life is more important than how long I live!" All dramatic, and shit.
And she started screaming at me. And she said, "You've got to give me time. You've got to give me time." And she kept going higher and higher: "You've got to give me time!" And what I heard was: "If you stop, you'll die."
She never said that to me, but I could hear her. She was afraid for me. And I tell people often that my doctor, Mardge Cohen, fought for me when I couldn't fight for myself. And I got it; and it scared me.
How long had you been on those pills?
Six months. I'd had enough.
But you kept taking those pills after that.
You know what? I got it. Because I didn't want to die. I thought I was going to die. But there was a part of me that said, "What if this shit works?" Like, "What if?" And so I made a pact with my doctor that I would stay on it. Because I didn't have insurance, I was getting my medicine at the free clinic. So I made a pact that I would stay on ritonavir until the new one came to County Hospital. And they were expecting it; she just didn't know when it would come.
The "new one" was Crixivan (indinavir). And the side effect was kidney stones. I had to drink 72 ounces of water a day -- and I figured I could handle that. But it took a year for Crixivan to come.
At what point did you start thinking, "I may not die. This is kind of working"?
Somewhere around '98. In '96, I was on my way out of here; '97 was protease inhibitors; '98, my now ex-husband started to get a little attitude. I'd gone from a size 0 to a size 6, and had to buy new clothes. I could see something in my ex-husband's demeanor. And I kept wondering. And he was, like, angry.
That you were living?
I kept trying to figure it out. And one day it hit me: He'd married me to watch me die! He said this: "You're my ministry. You're my purpose. I'm going to watch you die and I'm going to go around the country to talk about what it was like." And I said, "Damn, I'm living!"
I started to accept that maybe, just maybe, these medicines would keep me here a little bit longer. And that was '98.
I went from Crixivan to another regimen, and that worked even better. And it was like, whoa! And I could get off all of those prophylactic medicines. I didn't have to take Bactrim anymore for PCP. I mean, wow! It was a shock. Because I had prepared for death; I had not prepared for living. I hadn't saved any money. My credit cards: I was living large. I hadn't thought about what my future would be. It forced me to sit down and think about what my life would be like beyond where I was at, living day to day.
Because when you have AIDS and you're this sick, you are really living day to day. Because you never know what's going to hit you next, or how it's going to hit you, or how that day is going to be.
So you started living. And clearly, this husband became your ex-husband.
He sure did. And that was ... that was hard. Because I had told women he was the best thing since sliced bread. And when I started to crisscross the country again, women wanted to know what happened. And I had to say that the bread molded, and I moved on.
But honestly, if AIDS hadn't killed me, Kenny wasn't going to kill me. So I kept it moving. And I started to really think about, really, my purpose, and what God wanted from me. It got me to a place where I accepted my call in ministry. I went to seminary; I got my Master of Divinity. I'm a delinquent Ph.D. student. But I started to do things that I thought that I would never do.
Even today: I'm designing bracelets now. I have this incredible bracelet line, RLT Collection. I'm doing things I never thought I'd do. I turned 50 in May. I turned 50 in May! I never thought that I would live past 33.
It's the most amazing thing. And people say, "How did you do it?"
I say, "You know what? I crossed every T; I dotted every I; I had a doctor who cared -- who knew and understood HIV. And God kept me here to benefit from treatment and care."
Kellee Terrell is the former news editor for TheBody.com and TheBodyPRO.com.
Follow Kellee on Twitter: @kelleent.