Thursday, October 18, 2012

Just Some Little Hiccups

Sometimes it's just really hard to get stuff done.  You try, but the stars are not aligned for you that day and well, you know, shit happens.  

This past Friday I was (re)scheduled for my MRI.  I got there on time, they had me on the schedule properly that time, they took me back, asked me all the customary questions, and with some difficulty shoved an IV port into the back of my hand.  (I still have the bruise.  Don't blame them, I have squiggly veins that are always hard to start IVs in.)  I asked about the liver scan when they mentioned I'd be having cervical and thoracic spine images, and the tech explained that they really can't do liver at the same time, because it requires a different kind of coil than the spine images, so I made a mental note to let my oncologist know about that so we could schedule a liver image some other time.

I transferred to the special wheelchair that is allowed to go into the room with the powerful MRI magnet and for the first time got my eyes on the machine that was to take my pretty pictures for the next two hours.  As coffin cameras go, which is what I call these MRI machines, it looked smaller than usual.  I doubted I was going to fit into it, but the techs were trying to be optimistic, as well as being delicate about my size, so they laid me down on the table and we gave it a try.  Picture trying to push a bottle brush down into the mouth of a Coke bottle.  I'm not made of collapsible bristles, by the way.  It was not going to happen.  

The techs asked me if I'd ever been scanned there before.  No.  Where had I been scanned previously?  At the main hospital campus downtown.  Ohhh, they said.  The hospital there has an MRI machine with a 72 inch bore, and the one they had in their building was only 60 inches.  One of them made a comment that it was a good thing they hadn't gone ahead and given me the conscious sedation meds yet, so at least I wouldn't be all woozy-drowsy for no reason.  I tried to breathe and not scream.  "You have to understand how outrageous this is from my perspective," I told them with gritted teeth, "since this is the second time I've come down here this week, and I'm the same size I've been since January.  You would think that someone would have realized when they saw me Monday that this wouldn't work, or else had a note in my file to only schedule me at the larger machine."  They were apologetic, and of course being the imaging techs it wasn't their fault, it was the first time they had seen me and they had nothing to do with scheduling.

My husband was surprised to see me when I came out so soon after going in, and I kept my mouth shut while he grabbed my walker and they escorted us outside.  But as soon as the friendly, regretful techs went back inside I started to fracture at the seams.  "I didn't fit in the fucking machine," I said very quietly as we rolled toward the car.  "I don't understand how this shit keeps happening to me, especially this problem, when I'm the same fucking size I've always been since we started this whole mess!"  I was screaming by that time.  I don't know if anyone else was in that parking lot that morning but if they were, I'm sure I didn't make a very good impression.  Tears dripping down my cheeks, that were hot and red with shame.  Because of course, this would not be a problem if I were smaller.  Of all the things that have gone wrong this past year, of all the indignities and the delicate situations I've been in, this was the only one that was my shame, my plus size body getting in my own way.  Sure, they should have known better, scheduled me at the correct machine in the first place, but in the end it comes down to the fact that it wouldn't have mattered if I were thinner.  So my fury was mostly embarrassment, and I felt really down the rest of the day.

On Monday I was scheduled to see my oncologist.  We were supposed to discuss the imaging that had not taken place.  He got an education in the workings of MRI technology, why my liver can't be imaged with my spine, how I need to be scheduled at main campus on the 72inch machine every time, and how much effort, physically, and how expensive, in terms of my husband's time off work, this past week had been.  He was also very apologetic, and after some discussion, we decided to schedule separate CT scans for my organs, and reschedule MRI for my spine.  He would call me with the results if every thing looked good, and set a follow-up appointment for three months, or else have me come in sooner if things didn't look so good.

So the next day, Tuesday, I had to reschedule my physical therapy and go have CT scans instead.  I got to spend an hour drinking a fruity dye, during which time I needed to use the restroom.  This bathroom was comical in its proportions.  About the size of a broom closet, it contained one grab bar, a sink, an inward swinging door, and a toilet that was at least 6, maybe 8 inches shorter than a standard toilet.  I had to stand between the commode and the wall and hold my walker up tight against me to make room to close the door.  I made it down onto the tiny toilet with some effort and then wondered how on earth I would get back up off it, since my knees were about up to my chest level while my hips and hefty butt were considerably lower than that.  The grab bar was placed at the level of my shoulder, rather than being out in front where I could pull myself forward with it, so it was useless.  On my right was the sink, which I sure didn't want to try to lean on.  Fortunately the reason the left side grab bar was so far back was because it had to make room for a second entrance door on that wall, allowing access to the bathroom from both the hallway side and the X-ray room, and that door had not the usual hospital lever handle but a traditional round doorknob.  I gave a mighty pull on that knob and a mighty shove upward with my nice strong legs and I got my butt off that toilet on the first try.  

The room had been too tiny to bring my chair in with me, so I had to pull my drawers up, wash my hands, dry them, tuck myself beside the toilet again and get the door open all without sitting back down.  That's when I saw that my wheelchair was not where I'd left it, angled towards the door opening in the hallway.  No, some genius had moved it to make more room in the hallway, so it was now parked completely across the opening of the door to the bathroom, with both brakes on.  Facing forward, instead of towards the door.  It was trapping me inside the bathroom, and I could only reach the brake on one side, so I couldn't roll it forward or back, and couldn't shove it sideways.  There was nothing I could do but call out for help.  By this time I'd been standing at least three to four minutes and my legs were shaking. I leaned my elbows on the walker and begged my knees not to buckle.  After a couple minutes another patient happened to come around the corner of the hallway, and I entreated him to help move the wheelchair so I could get out of the bathroom and actually sit in it.  And I thought I'd cancelled that day's therapy session! Hah!  

After that I finished the funky drink and went in for my scan.  They also had IV contrast for me, besides the one I drank, and that stuff is bizarre, let me tell you.  You know immediately when they inject it into your veins because right away all your veins and arteries and even your tiny capillaries feel as though your blood has been replaced by boiling water.  Your eyes burn, your ears, the back of your throat, your chest, your bladder, and then when it hits your urethra it feels as though you've wet yourself with boiling urine.  The arm where the injection is coming in feels hottest of all, and just when you start to wonder how your veins can stand this fiery chemical, the heat passes and leaves you in a breathless sweat, feeling silly that you've reacted so strongly to such a few short seconds of discomfort.  In and out a few more times, hold your breath, and it's all done.  By the time they wheeled me back out to my husband the brief perceptional weirdness brought on by the dyes and the strange drink and the fasting was beginning to dissipate, and be replaced by hunger.  Good thing we were grabbing lunch on our way home.

The next day I finally got to rest, and have a break from therapy and doctor visits.  The only thing on the schedule for Wednesday was taking a little jaunt over to the school for my son's parent/teacher conference.  This should have been a breeze because we just walk over to the school, me in my power chair and hubby holding hands with the kids.  Except when we got to the bottom of the ramp my chair turned itself off.  That struck me as odd, but I turned it right back on again and turned onto my path and proceeded all of about two feet until it turned off again.  It took a minute to get it to come on again, but I did, and went about another two feet closer to the carport before it shut off again, and this time I couldn't get it to turn back on.  Seriously, my brain silently raged, you're going to break down NOW, when we have less than 20 minutes to get to a conference, and I have all kinds of appointments in the next few days, and I just generally NEED you to WORK for me, you're going to go on the fritz??  But I kept my cool, mostly.  I asked my husband to go in the house and get my manual chair.  I stood up and switched to it even though I hadn't been able to turn the power chair back on and tilt the seat pan back down to flat, so I had to overcome the backward leaning when I stood up.  

We couldn't very well leave the $18,000 chair sitting in the carport though, so poor hubby had to disengage the power system and manually drag that 358lb chair back up the ramp and into the house.  And he had to push me up the long slow incline from the lowest point on our street up to the top of the block where we turn the corner to go to school too, and again on the way home from the low midpoint to the top of the culdesac where we live.  "Whatever it takes," he grunted out his motto to me as he pushed, something I've heard him say many times before on this journey.  "I know love, I just wish it didn't take so much," I answered.  But we made it back home, and when we got there, he thanked me.  I couldn't think what for, so I asked him.  "For not giving up, and telling me to just take you back inside and go to the conference by myself."  I laughed.  "Hah, a likely story that would be!" I joked sarcastically.  He should know better than to think any of these little hiccups can beat me.

Just to hammer my point home, and because one of my therapists had (probably deliberately) commented that he didn't think I could do it before I discharge from therapy next week, I went ahead and walked 180 feet with only one cane in therapy today.  I'll do it again tomorrow, too.

1 comment:

  1. What a remarkable entry! I just have to say that your writing never fails to touch me. It is as if I am in the room with you... hearing every tone, every nuance, every inflection as I read what you have obviously written from your heart, with all the emotion of each situation. And your humor is always evident, a blessing for your sanity in some of your more insane situations. Love also, that you generally end on an upbeat note....180' with one cane!!!! Congratulations! You are truly amazing!!!

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