My recent stroll down the lane has left my fixating on a couple of things during my chemotherapy treatment. They are tied into one of the anti-retrovirals in my first drug regimen, Sustiva.
I was digging through the cupboard, hoping to find a facts sheet from the pill bottle, but no luck. I would have liked to list it verbatim.
Even before you read the section on side effects, there was this extra-special, super-duper side-effects section. An extra warning, as it were. It read something like this… Sustiva may cause suicidal thoughts, suicide attempts ar even successful suicide in patients that are prone to depression. WTF??? Come-on… Luckily, I have always been of the mind that my depression is situationally based and not due to chemical imbalance, ie. I get depressed because the world is fucked up, not because I microwaved my nachos 15 seconds too long… This drug may have helped to prove this fact.
The side-effects go on forever…
The teeny-tiny slip of paper attached to the bottle unfolds like those comical herald scrolls in cartoons, one inch wide but two feet long. Its the clown car of medical information.
Although the list included night-sweats and sleeping problems, it did NOT mention that the sleeping problems were due to the most fucked up dreams imaginable. At the start of treatment, the younger of my two sisters (I am the youngest of three) was the only family member that knew I was HIV positive. She and I debated whether or not to tell our parents. She thought it wouldn’t NEED to be necessary simply due to the lymphoma and chemo, Burkitt’s is a 50/50 cancer (meaning about half the cases are in patients with HIV and half not.) She had come out to KCMO with my mom and dad the first night I was released after the first round of treatment. SO I went to bed with that thought.
Now, a bit of background… My bedroom (soon to be old bedroom) has this great quilt that David’s mother made for us for a house warming gift. It has these fantastic batik fabrics mostly in purples and navy, with a bit of cream and what I would call terra cotta. The thing is absolutely beautiful. Our intent was always to paint that room a great rich purple as a background to that quilt. This in mind, on to my dream that first night home…
I climbed into bed – alone – David moved back into “his” room, previously more so simply for who had what in which closet. I had a night light to find my way to the restroom for the many MANY frequent stops due to medicines and stuff… As I was about to close my eyes, I took in the room in every detail, like I had never seen it before, I was this happy to be back in my own bed. The “dream” started as soon as I closed my eyes…
(I don’t even know if I can describe this…)
Imagine the five richest, brightest shades of purple you have NEVER been able to imagine before, scattered all about the walls – undulating as they pleased. (Now is the hard part…) Okay, to that… Imagine every edge of your bedroom that can be seen from your bed – every line defining walls and ceiling, every line outlining furniture and lamps, every line that creates every shape and shadow in the room. Now instantly change those lines to pulsating, rainbow colored thread (like that vari-colored yarn) being threaded through by big, bright plastic needles. Add to those threads smiley-faced and teddy bear buttons of EVERY color under the sun – every bright color anyway – bouncing along the lines of the threads behind those needles. It was like the Grateful Dead on acid – on acid! And then on acid again!
This was my first night home from treatment.
When I got up in the morning, I hear my mother coming up the stairs to the bathroom. I opened up the door and called her over. “Mom, I have to tell you something… I have HIV. I need you to know this.”
“Oh… Okay.”
I knew I could NOT keep this shit from her during chemo, she would figure it out. She is a VERY bright woman.
This was the start of the “Sustiva Dreams”… maybe someday I should write the “Sustiva Dialogues” spoofing the V show about med reactions…
Most of the following dreams were more “reality” based. I understand why it effected sleep… Imagine going through your day, in my case, a day filled with doctors and nurses poking and probing and sticking and moving and weighing and feeding and weighing again and measuring and IVing and so on…
Now, go to bed and live through that same EXACT day again in your dreams and try to wake up not exhausted. IMPOSSIBLE! That was the most common dream…
I was always so tired, because I was so fuckin’ busy in my dreams. Crazy, whacked-out, crack-whore shit!
Later in the treatments, I finally picked up on the subtle impact of Sustiva during day-light hours. It did the same thing to my waking mind as it did to the dreams, but much MUCH more subtly. It took months for me to separate out my own natural depression from the Sustiva induced depression. It was very slight. But things on TV that never normally impacted me started fuckin’ me up – bad. I can not imagine going back to public space while on this drug. Easy way for me to end up climbing a clock tower…
As soon as I was finished with chemo, I saw my ID doctor and told him to take me off of Sustiva. The sad thing… that regimen got me from almost 500,000 to undetectable in less than six months, during chemotherapy. A feat that no other combination has managed since…
but I am getting there.
Crazy, man…crazy!
gryphon's hole 