Kaposi Sarcoma Scared Me Back to My HIV Treatment

Last October, I came out. Everyone who knows me was surprised. Although I’ve been openly gay most of my adult life, and I’ve been HIV-positive since 1992, I have only been on treatment for a very short time. Three years ago, I fell out of care completely and was no longer on meds.

You’d think I would know better. I’m a fairly intelligent person, even if also opinionated and stubborn. Plus, I work for Positively Aware, an HIV treatment magazine, so you’d think I would be more, well, aware, of the importance of HIV treatment.

Except that I had become tired and afraid. I think that as long as I have lived with HIV, I’ve always lived with some measure of fear. It didn’t matter how healthy I was, or how sick I felt, fear has always lurked in the background.

In the summer of 1992, I developed blotches on my skin.
The purplish spots continued to blossom, about five new ones a week. When the fear became too much, I got tested that December: I was HIV-positive, and the spots were likely
Kaposi sarcoma, an opportunistic infection that the Centers for Disease Control and Prevention had labeled as an “end-stage AIDS-defining illness.”

“Good luck,” my post-test counselor said as he handed me three publications.

Kaposi sarcoma is a disease in which malignant tumors can form in the skin, mucous membranes, lymph nodes, and other organs. Chemotherapy was the standard treatment for KS, but it often killed the weakest patients, and it seemed I was next.

The fear of KS was overwhelming. More than 100 lesions covered my body, 50 on my head alone. I looked like I had two black eyes and a swollen lip.

I began reading the three handouts I’d been given, all of which were published by Test Positive Aware Network, an AIDS service organization in Chicago, where I live. One of them was Positively Aware. The more I read, the more my fear subsided to a level where I could think. That’s when I realized information was the key to getting a grip on my situation.

I discovered a clinical trial that used interferon, a known cancer-fighting drug, to treat KS. But I’m so afraid of needles, it took more than two weeks before I could bring myself to begin the daily course of a self-administered injection of interferon into my upper thigh. Whenever I jabbed myself, I would close my eyes and look the other way.

Imagine having the body aches of the flu — every single day. That was the major side effect of interferon. At its worst, I would rock back and forth at my desk, like someone experiencing withdrawal. But the interferon worked. Within two years, nearly all the lesions were gone.

In 1997, protease inhibitors, the first class of effective HIV drugs, appeared. But soon afterward, people with HIV began to report side effects from the long-term use of these medications and from having lived so long with the virus. Some people experienced a redistribution of body fat, giving them gaunt-looking faces, or swollen bellies, or the appearance of a slight hunchback.

So, quite frankly, I was grateful for my interferon side effects. Having had a disfiguring disease, I have become self-conscious about my appearance. My KS treatment was apparently keeping me healthy enough that I thought I could justify skipping HIV treatment.

After my insurance no longer covered interferon, I stopped taking it. For a few years, I coasted. I “felt healthy enough” to refrain from HIV treatment. Then in 2011, a familiar purplish spot appeared, just below my left ankle.

My KS was back. Once again, fear took hold. As months went by, I looked on as the spot slowly grew. It was only the fear that another spot might soon appear that made me see a doctor. A biopsy confirmed the diagnosis.

These days, the only treatment for KS is to go on HIV medication. Reluctantly, I did, going on one of the first single-tablet regimens. The spot began to shrink, then disappear, and my viral load and T-cell count improved.

The side effects came with almost the first pill. Repetitive dreams nearly as bad as those from interferon. And during the day, a depression was beginning to settle in. I was afraid that this was my new normal.

I struggled for 11 months. My meds had been covered by the state AIDS Drugs Assistance Program, and my job’s insurance was about to kick in. However, the paperwork transitioning me from ADAP to private insurance had gotten lost, and I now had no way to pay for my refill. This only seemed to add insult to injury, so I walked away from treatment.

I was afraid, however, of being called irresponsible — or a hypocrite. I told myself that my healthcare (or lack of it) was a personal decision. After all, I still “felt healthy enough.” But old fears lingered. Once, I had been afraid I wouldn’t live to see 30; having passed 50, I was starting to fear what might lie ahead.

My fears led me back to when I first faced KS. I’d made it this far; I was damned if I was going to die like it was 1985. That’s when I decided to get back onto treatment. Four weeks later, my numbers had already significantly improved. And this time, the side effects have been negligible.

No one wants to admit to being afraid. Fear can make you feel helpless and isolated. But the truth is, you are not alone. If you learn how to use it, fear can be a good thing. It can remind you that there is something more important than fear. 

Rick Guasco has been creative director ofPositively Aware since 2010. He occasionally posts on Facebook about his return to HIV treatment. Positive Thoughts is a project of Plus, Positively Aware, POZ, The Body and Q Syndicate, the LGBT wire service.