Saturday, August 27, 2016

a vicious cycle comes to an end

I got my Remicade infusion on Friday, August 12, a seemingly simple enough procedure. The nurse said it was chemotherapy, which stuck in my head. I guess I'd imagined chemo to be more involved or multi-stepped or something.

The next day was mixed, and I had a couple bouts of nausea and retching, squeezing my innards past empty, so that by the end I screamed putrid gusts of air.

Sunday is when things got serious: I had a fairly regular bowel movement in the early evening but it was soon followed up with a flood of blood BM. And then another even more urgent, even more torrential evacuation, so much so that I lost my vision for a second. And lo, as I washed my hands I experienced a head rush strong enough to make me stop, to make me slouch over the sink and slowly slump onto the bathroom floor. I rolled my head around, attempting to shake this heaviness off, this foreign dark fog of the mind.

I awoke to find my face on the floor at an distressing angle. I lay there a few moments realizing what had happened. Gathering myself, I pulled the nurse call string and braced myself against the sink, fearful of passing out again.

Over the next couple of days I received two units of blood to get my levels back to near normal. I continued the regimen of Prednisone and Methotrexate, still hoping that these and the Remicade would spare me from surgery and return my large intestine to normal. And indeed, my stools firmed up and the pain lessened, though I was highly constipated and often had to turn to Morphine and Gravol for relief. But the lack of symptoms was but a ruse: Sunday saw me throwing up and retching all over again, some five hours of hollering my guts into a basin, wiping away naught but white spittle until I collapsed in exhaustion, unable to face the world, dead by nearly every measure.

Monday, August 22nd I came close to passing. As with the week before, I woke to empty a large amount of blood from my bowels. This time I was careful to move slowly and avoid passing out. I got the nurse to give me some intravenous Gravol, in preparation for the nausea I now felt. I remember suddenly feeling an extreme unease, a general sense of malady.

"I can't see!! Something's wrong!!! I.. I hear ringing!" I scrambled and thrashed in bed, without direction, as my parents and fiancé looked on, stunned. "I'm dying, I'm dying!" My fiancé rushed to get the nurse. I got out of bed, "I have to go to the bathroom NOW!!" and pointed to the portable toilet chair which had been set up next to my bed. As I slipped off my underwear I recall losing control of my bowels and collapsing into the chair, even as I blacked out.

Later I was told that I lost over a liter of blood, that my systolic blood pressure dropped below 50 mm Hg, that I was in shock. I only remember having a peaceful, calm dream, the details of which will forever escape me, a self-erasing glimpse of some Elysian Field.

The nurses got me cleaned and back in bed, and with fluids being pumped into me the living world came back into view, the fog of nothingness drifting away. I remained calm, lucid even.

"Well, that was a lot of fun."
"How do you feel?" someone asked.
"I'm great!"
My mother sighed in exasperation.

My doctor told me, and all those around me, that I'd lost too much blood and that my large intestine had to come out now, the risk of more bleeding too dangerous.

"Mr. Hong, the colon needs to come out now."
"I don't want the operation."
"Mr. Hong, you must have the surgery. We have no other options."
"I know."

And so I left a piece of myself in Richmond Hill, and have several scars to show for it. The first night in ICU was pure agony, the longest night of my life: I was trapped balancing the pain of my back and the wound in my abdomen, never able to find relief for either, switching constantly between two extremes. I had been using Morphine pretty regularly before but now I had to plead for them to open the taps, to give my life an island to breathe on.

It has been a long fight, this war of mine, and I will emerge both a winner and a loser, much reduced is how I feel. You will forgive me if I am slow to respond, or lack a response in passing. The slightest breeze can knock me down, a kind word can set me into a river of tears, so close am I to reliving it all over again.

Monday, August 08, 2016

Back in the zone

I don't remember having to deal with such incredibly strong musical hallucinations the last time I was sick with colitis in the hospital. I really think I would, as it's currently driving me quite mad -- I keep hearing the same lame guitar riff fading in and out, some tired 80s rock ballad that is better left on tape. It is of course just my hearing's interpretation of the constant fans in my room, but the illusion is so damn convincing. And it is keeping me up, alongside the bubblings in my abdomen and the prednisone sweats.

Yes friend, I have once again tread back onto that murky path of pain, nausea, suffering, insanity that is ulcerative colitis. That I find myself so deep inside makes one's spirits fall, that all light should shudder so suddenly, so fully. The same disdainful nurses, the same apathetic system, the same curious doctors and their repeated questions -- all have passed before me as they do now, and having done so does not make the repetition any easier.

But sure, there is something in knowing that it can be passed, as remote a solution that may seem to me now, pumped full of drugs and finding relief fleeting and mixed. My life is put on pause elsewise -- dearer friends I do not know have helped keep my activities in order, as I continue to writhe and struggle to breathe, to push the pain out of my body like some spectral invader.

I remember missing food. Ye Gods, how I have squandered my daily calories on rot and fodder not fit for people. Surely there is a better way to learn this lesson?


I absolutely hate how the world is shaping up, just a frog boiling slowly in greed, misinformation, and lack of critical thought. I don'...