AIDS, Anniversaries and Attitudes

AIDS has been in the news lately.   Newscasters solemnly declared June 5, 20011  was “the 30th anniversary of the AIDS epidemic that took so many lives and remained a mystery for so long.”    Can epidemics really have anniversaries?   After all, no one is really sure when AIDS began. Some link it to the Belgian Congo of the 1950s.  Was Patient Zero the sailor from Norway or the Canadian flight attendant?  Either way, surely that marks the “anniversary” of AIDS.

But our 24/7 news cycle does not play well with complicated maybe-this-or-maybe-that stories.  So, in our typical Amero-centric fashion, we have declared the anniversary of AIDS based on a 1981 publication of the Center for Disease Control (CDC), Morbidity and Mortality Weekly Report, which reported on five cases of Pneumocystis carinii pneumonia (PCP) in young Los Angeles homosexuals.  The newscasters spoke as if AIDS was a thing of the past, like D-day or even polio. The broadcasters adopted their most sincere and compassionate voices.  Images of long ago demonstrations flashed across the screen, Rock Hudson’s frail countenance was seen ever so briefly, and the aptly named Magic Johnson — 20 years on in his private battle with HIV —  was backdrop for the news that protease inhibitors, coupled with education on safe sex, have slowed the virus to barely a crawl compared to the horrific days of the 1980s when it seemed that HIV/AIDS would find us all.

In my own world the “anniversary” of AIDS resonated more personally. It fell just three days after a true anniversary — the death of my husband, Robert Randall on June 2, 2001.  Robert had AIDS. He was diagnosed in late 1994 and died in 2001.  That gift of seven years was clearly the result of protease inhibitors, the AIDS cocktail, that arrived on the scene in 1995.

At the time of diagnosis Robert had just six T-cells, the immune system’s worker bees that help us fight infections of many kinds.  Average T-cell count is in the thousands but HIV, the virus that causes AIDS, directly attacks the T-cells which renders the victim’s immune system vulnerable to all manner of horrible ailments and afflictions.  In those early days of the AIDS epidemic it was not unusual for AIDS patients to have pneumonia, a rare skin cancer called Karposi’s  sarcoma, fungal infections of every variety, and even a blinding disease called cytomegalovirus. And that is just a few of the ailments listed by the CDC.  The early victims of AIDS died truly awful deaths.  And to add injury to insult they were often isolated and alone, tucked away in the farthest corner of hospitals, sealed in rooms with large warning signs and attended by medical workers dressed in protective gear that rivaled the spacesuit images we were viewing in the popular movies of the time, Alien and E.T.

Robert was spared most of that.  At the time of diagnosis he did have Pneumocystis carinii which the doctor treated with an inhaled drug called pentamidine.  As for treating the HIV, the primary drug at that time was AZT, which fell into the category of the treatment-is-worse-than-the-disease.  Robert politely declined.  We had personally known many people who used AZT and, in Robert’s opinion, it had not bought anyone the additional time that was worth the punishment.

Several months after his diagnosis, for reasons that are still unclear, Robert’s gallbladder died.  AIDS related?  Probably not. Medication related is more likely. Either way he was gravely ill and was scheduled for emergency surgery. The gallbladder was removed and the surgeon declared he had seen nothing like it. Necrotic and pocked with lesions. Big mystery but we had no time to think about that. We were literally in the midst of moving back to Florida to be near family.  Within a short time of arriving in Florida,  Robert developed pancreatitis and none of the doctors could figure out why. His pancreas, normally a small organ, was inflamed to the size of a child’s football.  He was in agony.  All treatments failed and there was talk of “just a few days.”  Finally he was placed on TPN – total parenteral nutrition.  He took nothing by mouth for three months and received all of his nutrition through an infused bag of vitamins, saline, and lipids.

It was the emerging internet that finally solved the puzzle. I found a study which stated that in an exceedingly small number of cases pentamidine — used to prevent PCP from recurring — could cause pancreatitis.  In retrospect it was probably what killed his gallbladder.

It was a long fight  back from the pancreatitis but when he arrived there was new hope.  The AIDS cocktail had arrived and Robert, having stood on the precipice twice in less than six months time and looked into the darkness of death, was ready to give it a try.  It was a good move.  In the next six years we would have many happy times and we would write a book of our experiences in the medical marijuana world (Marijuana Rx: The Patients’ Fight for Medicinal Pot ).

In the end he died not of AIDS but of lung cancer.  He had smoked two packs of cigarettes a day for more than 25 years. He loved his tobacco.  Did the AIDS accelerate the lung cancer? Quite possibly but we’ll never know and it ultimately doesn’t matter.  Robert is gone.  I’m certain of that and I know the precise date and time.  Anniversaries are good in that way. ❧