It began at 5:30 yet again.
“I’m here to draw blood.”
“I’m here to set up your IV meds.”
“How much pain are you in from 1 – 10″
“Can you feel this? And this? How about this? Hmmm…still no reflexes…”
“I’m here to give you your blood thinner. It could pinch a little.”
John quickly interjected, “I’m pretty sure the doctor said she wouldn’t get that anymore because her brain is bleeding.”
“Well,” the nurse responded after a moment, “She has rights. She doesn’t have to take it if she doesn’t want to, but it’s not your decision. Ma’am?”
Now, this nurse was obviously not privied to the rule that John was to be their go to, conscious, and alert guy.
“Uh,” I threw my hands in the air (about 12-14 inches off the bed…if that), “Do what you have to do.” I closed my eyes again, exhausted with the decision.
As the nurse began to fiddle with the Hepron blood thinner (which happens to be THE MOST PAINFUL FUCKING SHOT EVER), one of my doctors entered and saved the day.
John immediately asked her if I was to receive the shot, and the doc answered with a big, fat negatory (that means no). The nurse wasn’t impressed by the doc’s answer, however.
She immediately retorted, “Well, if she’s isn’t to get it, then there should be paperwork done.”
The doc responded politely, “I’m sure it’s in the works,” and a little more sternly, “She’s not to get the shot.”
The nurse left.`
The doctor came around the bed. Her golden hair hanging easily past her shoulders. Her blue eyes bright as the sky.
“You had a 102 temperature last night. How are you feeling?”
I nodded and mumbled something unintelligible. I still wasn’t communicating very well.
For example, when John had asked me to have a drink of water I responded with, “But we just came out of the store…It only cost $3.79.” I was THAT type of coherent. I was in and out of it that morning. The doctors all exchanged worried looks. They included John in all of their decisions.
The problem that could easily occur if the medicine didn’t work was simple. The parasites would continue to get into my brain (by continuing to chew through the lesions already bleeding) chew around while they figured out they weren’t in their normal host and die as a result…however long that might take. (If you haven’t watched the video yet, watch it now HERE)
They had found a blockage in my neck, my brain lesions were still there, and it was time for my lung biopsy. They pushed my barely responsive body down the hall on my bed to another bright room and proceeded to do the biopsy. What that means is they essentially stuck a needle into my lung and tried to fish out a piece of the abnormality…twice. To say it was painful would be a gross understatement. They explained to us, though John was the sole listener, how there could be the potential for air to seep out of the lung into the pleural space, and make it harder for the lung to expand until it collapses, causing pneumothorax. To fix that they’d need to stick a tube down my throat to help the collapsed lung regain its position.
Apparently, some air had seeped out of my lung and into the pleural space while they were fishing around in my lungs.
They decided to observe, and not intubate.
I was brought back to my room and immediately fell asleep, babying my left side.
Every time they refilled my IV meds or gave me more pills I would react horribly. My entire body would break out in a consuming sweat. I would feel as if I was burning from the inside. I’d want to writhe in pain, but since it was so hard to move my legs, I was stuck flailing my arms around, helplessly swiping at my damp skin. Nobody could put out the fire. It was simply too hot and uncomfortable. John was my angel, my tireless hero. No matter the hour, he would put cool rags on my head, wipe down my arms, and simply love me through the discomfort. He sang softly, and spoke sweetly. His eyes always communicated his desperate desire for my pain to dissolve…for my victory over death.
It was during one of these moments, when it felt like my body would simply go up in smoke and John was dutifully at my side, that she walked in the door.
“HOLY SHIT!” I called out in surprise when I saw her, followed by Tammie; both all smiles.
“What? You didn’t know I was coming? Are you surprised?” Amara said cheerfully.
“I did. I knew..I just forgot!” I was so very happy to see my big sister. I guess if I’d thought it through enough, I would have realized just how dire the situation was when family began to visit from the other side of the country.
There was no thought at all. I was simply ecstatic she was there, and it hadn’t proven to be a hallucination. If my physical state surprised her at all, she hid it well. This led me to believe I was doing as well as I felt in the moment, not 25 lbs lighter than I had been when the episode began, with ribs so clearly defined, a midget might use them as pull up bars. I felt partly lucid, partly coherent, partly awake, but completely surrounded by love. She sat down in the corner of the room, and we chatted for over an hour.
“I mean really. I’m 29 years old and wearing a fucking diaper,” I quipped, but suddenly looking absolutely horrified with eyes wide, I said softly, “I pooped on his lap.”
Amara’s jaw dropped while John immediately interjected soothingly, “Lover, it’s OK.”
I responded quickly, “No. It is NOT OK,” then looked at Amara with an intensity so palpable it could have been cut by a knife, “I. Pooped. On. His. Lap. Have YOU ever pooped on YOUR boyfriend’s lap?”
A bit cornered and trying desperately to hide her amusement and shock she answered slowly, “…Well, no…”
“Exactly!” I was exasperated.
“But Auri, you didn’t mean it,” she responded through chuckles.
I shifted my gaze to John, hoping he would read in it the absolute, sincere apology for my treachery.
Translation: I looked at John as pathetically as possible.
My sweet, sweet lover consoled me yet again, “Baby, it’s OK,” and without skipping a beat says, “I’ll get you back. When I’m older I’ll just take a dump on you! (insert silly irritated old guy voice) Errrrrrr Take that!”
We all laughed and again I basked in the love of the moment. We hung out cracking jokes and telling stories for about an hour.
I lost the conversation several times, but everyone was always patient with me when I gave that familiar blank look. I wasn’t hallucinating nor talking about big timbers being stuck into my back, but I wasn’t out of the woods yet. My breathing was still erratic and my heart rate was over twice my normal resting rate. I had what I believed were clear thoughts just fly away at a second’s notice, but even if they stayed a while, I’d realize, as the words were still departing my lips, that they were nonsensical. I found myself forgetting easy words, and needing to speak around them to communicate relatively often. For example: a table would be ‘that thing you eat on with 4 legs.’ The cognitive difference was the most frustrating for me.
I was 29 wearing a diaper and unable to speak for myself.
My sis left around 7pm with Tammie. (In case you missed it, Tammie was my 7th grade math teacher turned mentor and surrogate mom..who happened to live in AZ ) 🙂 I was exhausted from the medicine, the excitement of the day, and the unfamiliar task of being awake.
John turned on the television for some mindless entertainment. We were trying to find an episode of Family Guy, but ended up on the Discovery Channel watching Monsters Inside Me. That day’s episode? Angiostrongylus Cantonensis: Rat Lung Worm. The story was about a boy named Graham: Check out the short video of his story HERE.
Who’d a thunk it!?
The first day I’m semi present enough to watch television, there’s an episode about a man who suffered from the EXACT same parasites as my doctors were telling me they unofficially believed were running rampant through my body!!!
I tried desperately to stay awake through the entire episode but failed epically. I nodded off every few minutes like clockwork. :/ I wanted to lay on my side, but my left side felt like somebody had stuck a large needle into my lungs and fished around that day, twice….