[Check out the hole series.]
The human papillomavirus in me laid low and kept quiet for many years. When the big odometer in the sky rolled over from 1999 to 2000, Andrew began to re-think his priorities. He wanted to continue helping folks like himself and decided that meant learning more about the viruses he carried.
Little did we know that before the decade was done, I’d have to go back under the knife.
It was early in the new millennium when Andy first heard someone suggest that HIV positive men needed to get anal Pap smears. He thought that sounded pretty strange, and when he asked local doctors about it the response was dismissive.
“It’s an interesting idea,” one told him, “but what do we do with the information once we have it? There’s no standard to tell us how to proceed.”
When his birthday rolled around, Andy decided to have a Mardi Gras-themed party to celebrate that he was healthy and had made it to his 40th. When he’d gotten his HIV diagnosis at 25, he hadn’t even expected to live to see 30. The cover of the invitation was a picture of a boy sitting on a stoop “flipping off” the world. Inside, Andy invited his friends to come help him “give the virus the finger.”
They decorated his condo complex’s clubhouse in purple, green, and gold and served muffulettas and king cake. The stereo blasted “Lady Marmalade” and “Diamonds are a Girl’s Best Friend” from the Moulin Rouge soundtrack. Andy was single at the time, but one of his straight friends made a pointed remark about the number of his ex-lovers there. “Yes, I’m lucky,” Andy replied, “although it has sometimes taken time, I’ve managed to stay friendly with most of them.”
Speaking of giving the finger, both Andy and his doctor had grown complacent about examining me.
On the rare occasions that Andy did check, he’d only felt what he assumed were small hemorrhoids. These came and went over the years and he didn’t think he needed to be concerned.
One July day, out of the blue, Andy’s doctor did give him a digital rectal exam (or DRE) and discovered what he called a polyp.Andy wondered if he should be concerned. “I’m not really sure what it is,” the doctor said. He referred Andy to a practice that handled lots of miscellaneous surgeries for local HIV patients.
Dr. Graves mainly treated cancer patients but he was committed to helping the HIV community.In terms of bedside manner he was a dream. He examined me with a simple, clear device called an anoscope, and took the time to explain everything
before he did it,
while he was doing it, and
after he’d done it. Dr. G.said the polyp was likely HPV-related and should be removed with outpatient surgery and sent for testing.
The hospital experience was uneventful in a good way. Andy was in and out without complications. After he woke up, Dr. G came by to tell Andy that things had gone well. “You do have a hemorrhoid,” he told Andy, “and we have a good way of handling those when necessary, but we left it alone.”
When Andy went to Dr. Graves’ office for the follow up visit, Dr. G explained that the pathology did report abnormal cell growth also known as dysplasia. “We think of this in terms of three levels,” he said, “ranging from the mildest to what could be called pre-cancerous.”
“Yours is in the middle range,” he added.“You don’t need to be too concerned, but we do need to keep an eye out for any future developments.”
Andy had begun to go to a few community meetings on HIV/AIDS and gay men’s health. He started to hear HPV and anal dysplasia discussed from an activist point of view. Although his latest experience had for the first time helped him to understand that there could be a connection between HPV and anal cancer, he didn’t really think about it much.
Those concerned included gay men working in big city clinics doing treatment and research in the field. More HPV-related lesions with abnormal or pre-cancerous cells were being seen, they said, and the trend was particularly pronounced in HIV positive gay and bi men. They wondered out loud if a future cancer epidemic was smoldering beneath the surface.
While there wasn’t universal agreement, these researchers and practitioners had observed that when patients were screened regularly and the highest grade lesions removed, anal cancer only rarely occurred and so might be prevented.
Experts said the best method for screening was something called a high resolution anoscopy, or HRA. Andy learned that the procedure was very similar to one called a colposcopy during which women with abnormal Pap smears have their vagina and cervix examined. Trained doctors or nurses use special equipment (a stereoscopic scope and/or a digital camera)along with vinegar and iodine solutions to more reliably identify lesions that need to be biopsied. Andy asked around, and while colposcopies were being provided in local HIV clinics, no one in his region (or even in his state) was providing the rectal version.
Andy had occasionally noticed tiny blood spots on the Charmin after a bowel movement. When the heat and humidity of July returned, it occurred to him that his regular HIV doctor hadn’t asked about or examined me in a year. He hadn’t seen Dr. Graves since just after his last surgery. It was high time Andy scheduled an appointment. I’m sure glad he did.
Dr. G found a new lesion. “It’s a small growth on a hemorrhoid” he said. “I think I can remove it surgically here and now, if that’s alright with you.” For just a moment, Andy flashed back twenty years to his experience with the quack. Dr. Graves had earned his trust, though, and Andy told him, “Sure - let’s take care of it.”
True to form, Dr. G. explained everything and was exceedingly gentle. He used a local anesthetic, and with his nurse’s assistance began the procedure. “I think I need to put just one stitch in here to minimize any bleeding, OK Andy?” he asked. It was, of course. “I think I got it all,” he said afterward, “but from its looks I suspect that it is of a type that might grow back.”
Dr. Graves explained that he would send the tissue out for testing. When Andy next heard from the surgeon, he learned that the results once again showed cells with that middle grade of dysplasia.
Living with HIV for decades had taught Andy that some amount of what others might call denial could be useful. In the early years, everyone had – and rightfully so – been paranoid about any little symptom. Over time they’d learned to distinguish between minor and serious problems and to know when they did and did not need to call the doctor.
It was time for Andy to lift the veil of denial he’d held between himself and me regarding HPV. Fortunately he realized it.
I was at risk for high grade dysplasia or even cancer, and common sense told Andy that the care he was getting for me was just not good enough.
(to be continued... stay tuned)
Read previous installments.
As told to Mark Hubbard
