One week later I was again in the good doctor’s office. He wasn’t happy with what I had to say.
“My insurance won’t cover pegalated interferon Dr. Thomas, and I’m not willing to take a year off to do the regular treatment. My mind is made up.”
Several years passed with no changes in my health, but many changes to my personal and professional life. My weekly outings to the local drinking establishments had ceased with my diagnosis. Alcohol was officially taboo, so my partner and I no longer frequented the Friday night happy hour as we once did in our weekly steam blowing beer induced therapy sessions. At least I didn’t, and in my absence, and in the presence of alcohol and boredom and the stress of a demanding big baby of a business, my partner found other distractions as well. We split up.
Though we’d diminished personally, our business had expanded to another location. Now, there were two big babies to look after. So, in a gesture of good will and bad common sense, I was the guardian of one location and my ex had custody of the other. It seemed like a good idea at the time.
After a year of languishing solo, I met someone. I met someone in the medical field. I met someone who understood my concerns. Another silver lining rimmed the tarnish of what could have been a very crappy year. Gary was a Godsend.
It’s funny how often life changes with a phone call. It’s funny how good news can seem bad, or bad news turns out to be good.
“This is Dr. Thomas. I wanted to let you know I’m involved with a test study that involves pegalated interferon in the treatment of Hepatitis C, and I’d like you to be a participant. Since this is a test study you can be assured that you will be monitored and treated far above and beyond the excellent treatment you would otherwise receive under regular circumstances. I hope you agree.”
Lisa Church, Dr. Thomas’s assistant actually teared up the first time I gave myself an injection of interferon.
Earlier I’d signed the ½ pound of consent forms, been educated on the nature, scope and protocol of a blind study comprised of three control groups and sponsored by a major pharmaceutical company. I was genuinely grateful to be in such capable hands and the beneficiary of such an expensive regime of drugs, gratis.
“It’s just so emotional for me to see someone take the first step to recovery,” she whispered. She seemed to be a warm and caring person. She’d confided that she had a gay brother who had passed away. I told her I could be her brother during the course of the treatment.
“I’m happy too Lisa.”
Actually, it was a qualified state of happy. The effect of the injection was instantaneous. A terrible, nauseating metallic taste filled my mouth.
Several hours later I felt weak, disoriented, and inordinately tired. The next day, I felt like the 7th circle of hell. As I dressed for work I began to realize the challenge that lay before me. The protocol demanded 24 weeks of treatment, 24 injections, and at the end of that period if there were any detectable virus, treatment ceased and I would be dismissed as a “non-responder.” If there were no detectable virus at that time then I would continue another 24 weeks of treatment to assure complete eradication of the hepatitis virus. In a short-term sense, it was a lose – lose situation, but in the long term, if all went well, I could at least have a guilt-free cocktail and some assurance of longevity.
Weekly visits to the clinic were structured and fairly quick, mainly to review the successful, diminishing viral loads, and to place a “mental health call” to the drug company hotline, a procedure fraught with concern and ceremony as all staff left the room so I could make the call in private and “chat” with the robo-therapist.
“On a one to 10 scale, would you say you were depressed: enter 0-9 on the telephone keypad.”
These folks took their suicides seriously.
Weeks turned to months. Hair thinned, weight dropped, and a bumpy itchy ugly rash covered most of my back, thankfully out of my sight but regretfully in full view of my partner Gary.
“It looks like it hurts. Does it?”
“No, it really doesn’t. That’s good. But I have to wonder, if this crap is doing this to the outside of my body, what’s going on inside?”
I honestly wish that speculation had been less prophetic.
Somewhere around the 12th week and during one of the weekly visits, Gary accompanied me as I consulted with Lisa.
“I’m thirsty, I have to pee all the time, and I’m craving sweets. What’s that about? It feels like what I’ve read about diabetes.”
“It’s just the effects of the drug,” Lisa replied.
The weeks that turned to months were a daze. Running the gallery was a nightmare. Most mornings started with a shower, a small breakfast and dry heaves with more dry heaves shortly after arriving at work. I made a point of scheduling “heave” time. My work was well past the “suffering point.”
Anyone who has ever worked a retail job knows the importance of the details: remembering names, recalling birthdays, organizing, and staying organized. At this stage in the game the details had become a luxury. Opening the door and greeting customers and answering the phone and recalling an artist’s name and story became accomplishments. Old client’s seemed sad a troubled, and “pity sales” soon became no sales, and diminished income translated to less employees and eventually no employees, so just when I needed help the most, I could least afford it. Overwhelmed, besieged, and beleaguered, the hard decisions were made, and one of the locations was closed.
The other location lingered a few more months, and as pitiful as a mastodon trapped in a tar pit, refusing to accept its fate, the final manifestation of a 30-year career arc succumbed to the inevitable. The lesson learned? Don’t try to run a high-end retail craft gallery, solo, and under the influence of interferon. It won’t work. You’ll just look foolish.
In all fairness there were several other factors working against the galleries. The relationship breakup had fall out. It’s not a walk in the park to be in business with an ex. Roadwork and construction had taken a toll on business the previous year, and a difficult medical and emotional situation was further complicated by the red ink generated the previous year. But, if fair be fair, it cannot be denied that interferon was the death knoll and the final nail in the coffin. I can say, unequivocally, that interferon ruined my business. It was the cement galoshes on a shipwrecked sailor, the grease under the saddle of a runaway horse, and the can of kerosene in a house afire.
I can’t completely blame the interferon on the demise of my relationship and the demise of my business, but it was certainly a factor. At least I’d be rid of this damned hepatitis and the anxiety that clung like a shadow.
A few weeks before my 50th birthday, and on that long anticipated 24th week, I received a phone call from the study coordinator, Lisa. At last count my viral levels were in the 100’s, basically undetectable. That part of the big picture was looking very, very good.
“Kurt, I’m sorry to tell you, but your virus jumped from 400 to 500. You’re a non-responder. We need you to return whatever drugs you have left to us as soon as possible.”
As the phone hit the wall, as I sank to the floor, and as the sink of the sinking in progress hit bottom, I realized there wasn’t a damned thing in the big picture that looked even remotely attractive. It had all been for nothing. This was an especially disappointing outcome after such high hopes. Only a few weeks earlier there had been talk of an amazingly successful response to the drugs.
And on top of it all, a 50th birthday loomed.
The trip to San Diego was a healing. It was good to spend my birthday with friends, far removed from the trauma and drama of the previous weeks. I’d returned the drugs with no comment and a lot of resentment. For a group that was so damned worried about my mental health and emotional well being, that certainly was a dismissive notification. I let them know as much.
But that was behind me now. I could accept my hepatitis and I was ready to move on. It had been a good birthday despite the looks of alarm from folks who hadn’t seen me for a while. I really can’t see myself when I look in a mirror. I don’t think most people can. In this case, it was a welcome phenomenon. Had I recognized how bad I looked, how much weight I’d lost and the color of my skin, I wouldn’t have left the house.
They told me at the medical center that I would have several more weeks of ill health and ease as the drugs left my body. Several weeks had passed, so the interferon and ribovirun still must be exiting stage left.
Unfortunately it was more complicated than that.
On a five-hour drive from San Diego to home we had to stop a minimum of 15 times so I could pee. I couldn’t drink enough, and I couldn’t eat enough, and yet I was still losing weight. The peeing thing was getting completely out of hand though. That was truly the elephant in the living room.
“Your glucose is extremely high. You’re diabetic.”
“You’ve got to be kidding! After all this…this?!”
Dr. Smith sat by her desk, expressionless and uncharacteristically detached. Dr. Smith was a bit of a friend as well as my physician, and her aloof response was completely out of character.
“It has to have something to do with the drug trial Meg. It must. This can’t be a coincidence.”
“I don’t think so Kurt.”
“Well, indulge me. There’s your PDR. Look it up if you would. I really think there must be some kind of correlation.”
As she shuffled through her tome of a Physician’s desk reference I recalled that Dr. Smith was a pharmacologist before she became a physician. I must be wrong.
“You’re right,” she responded with little contrition or surprise. “Interferon has a destructive impact on the pancreas. We’ll try to treat your diabetes orally. It’s not a big deal. You’ll do fine.”
One week later, with my new glucose meter registering 500+, a reading, which translates: get your ass to the emergency room ASAP; I began to suspect I was not at all fine.
A few months later, Dr. Smith found an excuse to dismiss me as her patient and requested I find a new primary care physician.
My appointment with Dr. Thomas didn’t go well. He didn’t show up. I rescheduled. The second time he made an appearance. Looking every bit his position as a noted hepatologist in a renowned university research hospital, ensconced behind an oversized desk, Dr. Thomas informed me that I’d signed consent forms, I knew that diabetes was a possibility, and that in all actuality the interferon had simply “unmasked a pre-existing condition” He went on to inform me that I’d lost so much weight because I’d been, “pissing out my nutrients.”
Conversely, his cavalier attitude was really, pissing me off.
“Really? You think I was diabetic? Then why did you put me in a study that involved drugs that can damage a pancreas, if indeed my pancreas was already as damaged as you suggest!”
Dr. Thomas had no answer. Again, the stare: over the reading glasses, direct and unrelenting. He said nothing further. I added to the silence, and then I left his office with no further comment.
I took the elevator to the basement level of the hospital, to the study area and to retrieve my records, and I suspected that this story was far from over, and that there was more to unmask.
Anne, one of Dr. Thomas’s other assistants did not hesitate to grant my request. She produced my chart, wrote in a few additional notations, and handed it over with a muted, “Good Luck.”
In the time it took to ride the elevator from the lower level of the medical center to the lobby, it was evident to my layman’s eye that something wasn’t right. A quick scan of the chart indicated a slow, steady escalation in glucose levels, clearly documented over the course of 24 weeks. I wish I could say I saw red. I wish I could say I felt faint. I wish I could say I felt anything other than what I felt, for the only emotion I can recall is a complete lack of surprise. It now made sense, and it spoke volumes of the bum’s rush of a dismissal I’d received a month earlier.
They knew, they said nothing, and they wanted me the hell out of their study. Diabetes was not the desired outcome, and now if I would only go away…
The next day, and with the blessing of a close physician friend, I phoned an attorney of my physician friend’s suggestion.