A Reflection on My Journey from Kaposi Sarcoma to High Blood Pressure
It started with a bruise on my thigh. I thought I had bumped into something, except it didn’t go away. I could run my finger over and feel the texture, and I began to suspect it was something more.
I had seen Kaposi Sarcoma (KS) on the arms and faces of people living with AIDS. Mostly in photos or when the occasional brave soul would face the inevitable shunning that came with going out in public with the lesions.
In those early days, it was a selfless attempt to teach others about the disease ravaging our community. Occasionally someone would notice the dark spot on my leg and ask what it was. I always replied that it was nothing. But they knew even as I denied it.
Kaposi Sarcoma and HIV
This was two years before I took my first HIV test. But I didn’t need a test to tell what I already knew. I had seen what the cancer had done to many people around me. It would kill me most horrifically, eating me alive while disfiguring my body. But I still was in deep denial.
In time I confirmed my HIV status and joined the people living with AIDS community. I was lucky to have been surrounded by activist friends whose spirit to fight and survive inspired me to fight to the very end. I learned of a clinical trial to treat KS, but it required a biopsy to participate.
I made an appointment. I wore my emotional armor and rode the bus to the doctor's office. She took one look and said she didn’t need a biopsy to tell that this was KS.
We did it anyway, and I got back on that crowded bus trying not to scream, images of my fate flashing through my mind. What I had denied for so long was finally confirmed. Somehow, I forced myself not to weep and scream out in horror.
Protease inhibitor miracle
Several weeks later, I was at another doctor’s office, the biopsy results in my hand. More tests would be run before I could qualify for the clinical trial. Sadly, my liver and kidney functions were too high to take medicine.
The doctor told me to manage my stress and eat right, but nothing could be done. Then he wished me good luck, and I walked out of his office into a world devoid of hope.
The spots spread across my legs. Once after a horrible night sleeping on the floor of a hospital room, I woke up to three new spots on my arm.
People around me were dying; my doctor told me to get my affairs in order, and I accepted that I would die soon. Then the miracle of protease inhibitors happened.
My viral load became undetectable, and my t-cells skyrocketed. After a couple of years, I began taking Crixivan, and the spots on my body disappeared. The KS was gone and remained gone to this day.
Blood pressure and HIV
A new journey began—one of constant monitoring and occasional regimen changes. My viral load remained undetectable, and overall, my health was good. Except something unusual was happening with my body. Little pockets of fat began to appear on my back and the back of my neck. Also, my cholesterol shot up.
I began gaining weight, and my stomach seemed to expand without warning. I tried exercising and diet regimens, but the weight kept piling on, and before I knew it, my blood pressure was off the charts.
So, a new journey began. One was with new medicines to control my blood pressure and new choices I had to make regarding the food I ate and the exercise I did. And the tests my doctor had to run.
All this together brought this co-morbidity in check. The cost of curing my cancer was the disfigurement of my body and other health issues to worry about.
Keeping my health in check
So now, instead of worrying about little spots moving across my body, I fear if there is too much salt in my diet or if I’m taking in enough water and fresh vegetables. And I’ll take that over, worrying about an incurable skin cancer any day.
Do I blame my condition on the drugs that saved my life? No, why would I? I made peace with medications as part of my life for the rest of my life a long time ago.
There’s a small scar on my arm where the biopsy was taken. I look at it sometimes and remind myself how lucky I am to be here, alive, and able to face these challenges.
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