Saturday, October 27, 2012

How Far We've Come

This video represents my triumphant final physical therapy session for 2012.  I do not have any more insurance-covered visits for this calendar year, and will try to continue working out myself until such time as I can get back into rehab after the first of the new year.


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.

Thursday, October 11, 2012


It's lightly said, a joking expression, in the retelling of a coworker's family medical drama.  How once the ill family member was in safe hands at the hospital, rather than stay in that chaotic circus of concerned relatives and distressed friends, the coworker was relieved to return to work.  "Welcome to normal," my husband told her, acknowledging he knew exactly how she felt.  How returning to work and normalcy felt so good.  It's not the first time he's said it, and I know it to be true.  To be essential to his coping.  Still it twists me inside, hurts sharply, burns with the unfairness of all of this, that life with me has become this constant struggle and worry from which he needs to escape, even for a few hours a day, because nothing about our life at home is normal.  Normal like work, where there are only every day concerns, employee needs, customer complaints, nothing life-or-death serious. 

At first, wallowing in this moment of self-pity I'm having, I can't think what my own escape is.  How do I get away from this flawed body and the cancerous threat inside it, bent on my destruction?  Where can I go except in my own head to escape the fear and the weakness and the mortality I feel?  It takes a few moments to realize the simple answer before me.  The Game, they call it in the hilarious parody web show created by Felicia Day.  It is most definitely my escape.  

In the World of Warcraft I assume the identity of a fearless fighting veteran, a lithe night elf who never has trouble walking.  She runs with ease, leaps gracefully, transforming when needed to the form of a powerful, stalking leopard, a ferocious, protecting bear, or a swiftly traveling stag.  At sea she takes the form of an orca, moving faster than her feebly swimming foes.  In battle she uses magics to bring down her enemies, and to revitalize and heal her wounded allies.  And when, as I did in my childhood, she stands atop some height and takes that fateful leap, she doesn't hit the ground hard, as I did over and over again.  She blurs into the form of a great stormcrow, and she flies away.  The freedom that only the endless sky can bring is hers, and thus mine.  

In the company of her brave companions, whose players have become friends that have supported me like any present in the "real" world would, she challenges monsters big and small, and should any of them be felled in combat, they are easily brought back to life again to carry on the adventure.  It is the ultimate and perfect escape for someone like me, full of satisfying social interaction, equal parts epic action and storytelling, and when it comes to the difficult raid content, a great deal of effort invested to get hard-won treasures and glory.  And in Warcraft, unlike life, death never keeps its victims.  

So what if my husband feels relief to arrive at his office.  We all have our refuges.  And when this is all too much for him, it's not his desk he collapses on for comfort.  It is me, and it is me who holds him while he shakes from sobs that make no sound, and it is me who promises never to give up, never to leave him here without a fight.  That we will make our final escape from this world the way we originally planned, together, our last breath expiring at the same moment in the wrinkled infirmity of our old age, never to face a day of grief from one of us living without the other.

Monday, October 8, 2012

Booooogedy....Just Kidding!

When I was a kid, Disney was great about playing the same Halloween favorites every October.  Mr. Boogedy was one of them, and this clip was one of my favorite parts:

That little "Just kidding!" after every scary "Boogedy boo!" just cracked me up.

Today my husband and I were ready to boogedy for my MRI scan, but all we got was a great big "Just kidding!" from the world of scheduling mishaps.   I wasn't laughing this time.

First, the scheduling coordinator at my oncologists' office had given me the wrong address, so I went through all the effort of getting out of the car and into the wrong building.  Then, when we arrived at the right building, we found that through a series of scheduling miscommunications we were not on the schedule at all, a process that took over an hour to sort through before we could finally leave and get breakfast (since I had been fasting, despite not being told to, because I've had enough of these stupid things to know better).

So now my MRI is rescheduled for Friday, only when they finally got the orders for it, the orders said general anesthesia instead of conscious sedation, and may not have included the liver scan my oncologist wants, so I have to go through another communication circus to make sure I get the instructions straightened out.  Oh joy.  And when I get done with the whole big MRI mess on Friday, I'll get to have a couple hours rest and then physical therapy afterward.  With all the sedation drugs plus the work-out, at least I can be assured I'll sleep good Friday night.

Saturday, October 6, 2012

National Awareness

It's October.  As I jokingly told my husband, this is "National There's Only One Kind of Cancer Month."  I've got nothing against making people more aware of breast cancer.  It's very important for people to get the proper screenings at the proper times to ensure early diagnosis, assuming that science can ever make up its mind about when the proper times and what the proper tests really are.  But as a fighter of some other kind of cancer, I can't help but feel a little neglected by the public and more importantly the research community.  Where are the billions of dollars for finding out why some people suddenly develop rampant blood vessel tumors in their livers and lungs?  Maybe a few of those billions could be spared on the much rarer group of patients whose rampant blood vessel growths shatter their spines, like mine. 

There have been a few tiny steps towards awareness for EHE.  Kris Carr made a documentary about her journey with it that eventually led to a fairly successful Crazy Sexy Cancer media machine, including diets and merchandise and books.  On the surface it all feels a little commercialized and showy when I visit her websites, but I think behind the glitz she still holds the goal of improving people's lives and health.  Her EHE attacked her liver and lungs, though, the more "common" version of this rare disease, and I think her documentary would have turned out very differently if she'd had to spend the first six months of her film footage on the eight foot journey from bedside to hospital room door.   Fighting cancer doesn't seem as crazy sexy when you can't control your bowels, a miniature crane lifts you in a sling from one bed to another because you can't stand or scoot over, and you have screaming panic attacks during your MRI's.  Then it's not sexy at all, it's just crazy.  

I hope that some day I can get more researchers to pay attention to EHE.  And in the meantime, I hope that I can get more people to share my realization, and Kris Carr's real message, that life is precious and fragile, that hope is power, and that you don't need an incurable illness to wake you up to the joy of it.  You can choose to wake up NOW.

I Need Nerves of Steel

My body is very tired this weekend. It has a right to be.  The week in therapy summary is all about big numbers using single-point canes:  Tuesday a combined total of around 200ft was walked in four segments; Friday, 267ft was steadily, gingerly stepped in only three segments.

And after all that exhaustion, I had to do a few car transfers and a crazy toilet ballet in order to accomplish a visit to my doctor's office and provide a urine sample, which confirmed my suspicions of a developing UTI.  I'm incredibly thankful, and proud of myself, that I noticed the symptoms early and avoided my usual pitfall of brushing them off as mild or insignificant, so that for once I got antibiotic without having to make a hurried trip to the ER in agonizing pain with an infection so bad I urinate blood.  My history with UTI's has been that they start out mild and friendly, like I felt yesterday, and progress to the ER phase in less than 24 hrs, so it's good that I finally started paying better attention to my subtle symptoms.

So I'm resting a lot this weekend.  In addition to recuperating from last week's efforts and trying to give the antibiotic time to improve my bladder discomforts, I also need to prepare my body and more importantly my mind for the challenges they will face on Monday.  It's time for another MRI, so my oncology team can check on my Epithelioid Hemangioendothelioma of the spine, as well as survey my liver to make sure my EHE hasn't spawned any demonic offspring there.  I'm having conscious sedation this time, meaning medications to help me relax and stay calm without full anesthesia, so I don't have to go through the awkward return to consciousness with a tube shoved down my throat, and the resulting soreness that lasts for days.  Aside from claustrophobia, it's always frightening to have those big machines look inside my body, and waiting to hear if they found anything dire.  I had a dream last week that there had been a metastasis, evidence of the degree to which my subconscious mind worries about it, even if my conscious mind stays focused on rehab and daily life.

At least if the week starts out with an MRI, you know it can only get better from there.