Monday, December 31, 2012

So Long, 2012

On Christmas Eve in 2011, we all stayed home together, my husband, the children, and I.  I had only been out of the hospital for a couple of days, and wasn't strong enough or steady enough on my feet to try going to my husband's family for the usual Eve festivities.

On Christmas Eve in 2012, we piled into the car and drove the forty-five or so minutes to a cousin's house, where my husband and I did our patented arm-lock dance to hold my balance while my legs did all the work of getting me up three stairs into their home.  Then, without stopping to sit and rest, I sent my husband to the other side of the room, and asked his cousin to hold my canes for a moment.  Then I walked over to my husband and gave him a hug and a kiss, and said, "Merry Christmas."  I hadn't held onto anything at all.  Just walked.  Granted, it was pretty shaky and not entirely stable.  I hadn't counted on how tough the three stairs coming in would be.  But it was 10-12 feet of unassisted walking nonetheless.  We both cried.  Happy crying, which by great effort we've done about as much of as unhappy crying in 2012.

On New Year's Eve in 2011, we sat at home, as we're doing tonight, watching movies and making anything-we-want-on-them sundaes.  I got up from the couch and walked to the dining room table for dessert with the family, and then went back to the couch, with great difficulty.  We were telling ourselves my legs were just having a couple of weak days, and that the next day I would surely wake up feeling stronger again, but it would be the last time I would walk for four months.  The next day, New Year's day, I could barely stand in the morning, and every time I had to go to the commode was a three-person production.  Monday was the observed holiday, so I had no therapy that day, but I was still in denial and didn't call the off-hours nurse.  It just wasn't possible that I could be losing my legs again, I just had to wake up stronger the next morning... 

That Monday I couldn't stand at all.  We were resorting to sliding from one seat to another and wriggling my clothes up and down my legs each time I had to go potty.  It was miserable, but not as miserable as seeing my nurse the next morning, and having her gently explain that this wasn't some inconsequential weakness, that I really ought to go back to the hospital and get checked out.  I'd just spent 8 weeks in the hospital, the last thing in the world I wanted was to go back there after only being home scarcely more than a week.  

That Tuesday was the beginning of what would be an 87 day incarceration including surgery, radiation, therapy, and far too much loneliness and homesickness.  But it was a worthy road to have walked, to reach the place I am today, at home, with my family, watching movies and eating ice cream, and bragging to my husband how I walked to the kitchen and got my own water refill yesterday.

Here's to 2012, a long road that had to be traversed by any means necessary, by wheel, by walker, by cane, by foot.  And here's to 2013, may it be a little easier on all of us.

Wednesday, December 19, 2012


Today, my husband and I piled into the car in the freezing early morning to drive downtown and see my neurosurgeon.  I had been told to check in at 7:45am on the first floor of his building for a CT scan, and since we're not allowed to take on any endeavor without complications, we promptly found out we hadn't been told I was scheduled in a different building.  Back to the car we went, around the corner, and thankfully still got to our destination in time to get a nice quick and easy scan done.  

Back to the car again, drive back to the first building, and head up to the 5th floor to see the man with the magic fingers.  I was eagerly anticipating showing off my walking with canes abilities, and he didn't disappoint by being suitably impressed with my progress.  Then it was his turn to give good news:  my CT scans showed a nice, solid bone bridge has grown from the posterior of T2 to T4, which means the fusion surgery in November 2011 has done what we set out to do.  Bone growth has permanently joined my thoracic vertebrae in a rigid line that will help prevent future spinal cord compression that could have been caused by the lack of support where shattered T3 used to be.

He decided that I've done so well, I don't need to schedule any more follow-up appointments with him.  In his words, "I'm always happy to see, but I don't think you need to drag yourself down here anymore."  We can call him anytime something new comes up, but we won't have to juggle any more pre-set appointments with him.  We've graduated from Neurosurgery post-operative care!

To celebrate this event, we took ourselves out to a lunch/movie date to see The Hobbit.  And still made it home in time to welcome our son home from his last day of school before winter vacation.  Good thing there's already no school tomorrow, since the forecast calls for snow tonight.

Friday, December 7, 2012

Pushing The Limits

Today we braved the threat of rain and the crowds to do some holiday shopping.  Knowing how much wandering we would need to do inside Walmart, we brought the power chair with us, which of course always makes for a nerve-wracking driving experience.  I'll never stop being paranoid that someone's going to smash into my large, expensive chair when it's strapped on its tow rack on the back of our car.

We had a lot of fun toodling around the store picking out presents and stocking stuffers for our kids. And we finished up in time to head over to our favorite Indian restaurant for the buffet lunch.  The trouble with this tasty little joint is that it's located in an out-of-date little strip mall with scarcely any handicap parking and only one ramp access to the sidewalk for the entire length of the strip, and that was at the opposite end from where we were.  And the tiny little storefront doorways didn't look like they would accommodate my big chair.  No matter.  No amount of buckled and cracked asphalt or sloping sidewalks was going to keep me from nan and vegetable korma.  We decided to leave the chair at the car and walk to the restaurant with my canes.

My husband parked the car as close as he could get to the restaurant while still having room for both of us to get out of the car (some of the parking spaces there are very narrow) and came around the side to hand me my canes.  I turned out of my seat and stood up, slipped my hands through the wrist straps so I couldn't drop the canes, and headed toward the sidewalk with my husband close beside me.  When we reached the curb, we went back to our old safety dance that we developed in my stronger, stairs-everyday days last fall, where he walks backward in front of me, and we clasp forearms for balance and strength.  One big step up and I was on the sidewalk, but I still had another 60+ feet to go before I reached the restaurant table where I could finally sit down.  Slow but steady I cruised down the sidewalk, which was literally a gentle downhill slope toward the restaurant, finally reaching it after one brief rest of leaning against a wall.  My husband and a server held the inner and outer doors for me, and I asked that we be seated at the closest possible table, which was only about 15 feet from the front door.  I sure was glad to finally sit down and catch my breath!  It had been quite a workout getting there, but I was thrilled to arrive and to enjoy the variety of delicious, exotically spiced foods on the buffet for my reward.

If you've never had Indian food, you don't know what you're missing.  This place we like specializes in Northern Indian cuisine, and our favorite dish of theirs, by far, is chicken korma.  The korma sauce is a sweet, nutty, creamy concoction that I'm almost certain has some kind of nutmeg or cardamom in it.  On the buffet they don't have the chicken variety, but a vegetable one, which is full of tender peas, small dices of cauliflower, and soft lumps of potato.  Another favorite dish is chicken masala, with its spicy, Georgia red clay-colored tomato curry sauce, which is very mild on the buffet, but can be ordered with as much heat as you like when you're dining off the menu.  And to support all these hearty meat and veggie dishes, and more importantly to sop up all their delicious gravies, are basmati rice and fresh-baked nan.  With endless cups of hot, creamy chai to wash it down.  It just doesn't get any better than that.  

I knew I didn't want to push my luck or my wobbly knees when we finished lunch though, so I had my husband go ahead of me to get the car and bring it closer as I slowly made my way up that sidewalk.  We did our clasped arm dance while I stepped down off the curb, and then I made my way to the car and sat down in my front seat.  It was a total success from start to finish, and now I've earned myself a nice afternoon of rest.  I'll need it, since tomorrow is my son's bowling birthday party!

Sunday, December 2, 2012

Birthday Redemption

When my son was turning 8 years old, we planned a party for him at the hospital where I lived.  Cancer had not  yet come into our lives, and I was making promising strides in therapy where I walked with a walker and did arm exercises to carefully increase the mobility of my recently operated-on upper back.  So we were full of optimism, not yet knowing how many more months I would remain in the hospital and how much worse things were going to get.  

We reserved the community room and invited close family.  We were going to have cake and presents, all of us there together.  His party was going to be on a Saturday.  But on that Friday, during my physical therapy sessions, I found that whenever I stood up, it got difficult to breathe.  It was hard to do much in therapy, being so short of breath.  I kept getting dizzy from it, too.  My therapists became concerned, and left messages for my doctors.  So sometime in the middle of the night technicians came and took me from my room, and wheeled me down to ultrasound, where they made a discovery that ruined my son's birthday.  I had lungs full of blood clots, and was moved at 4am from the rehab unit to the acute care unit, where there could be no party for my son, not even any visits from my children.  My son's party was hastily relocated to his grandparents' house where it was celebrated without me, and I spent most of that anxious weekend crying and using my deep breathing apparatus.

Today my son turned 9 years old.  We had doughnuts for breakfast, all of us, together.  We played his favorite video games together in the morning.  We had cereal for lunch.  After lunch, my son and his dad played kick ball in the yard, while his sisters watched preschool television and I took a nap to prepare for dinner.  Because for dinner my son chose one of his favorite restaurants, IHOP, and we all walked into the restaurant together.  We all walked into the restaurant together, and we all walked to the car, together.   Mommie's wheelchair, relegated to emergency-only use, stayed in the car, while the pretty matching metallic blue canes came with me.  

On Saturday, we will all go to his bowling party together, and we will all bowl, and I swear he will never have another ruined birthday as long as I live. 

Thursday, November 8, 2012

Steps in the Right Direction

I realized the other day that I had inadvertently forgotten to disclose a small but important feature of my recovery.  It was so easily lost in the shuffle of big important things, like walking with canes, but it's a matter of huge convenience and really demonstrates the extent to which strength has returned to many interacting muscles in my body.  I can now lift each foot and raise it up to rest on the other knee.  Such a simple little thing, that we do every day when we're getting dressed and want to put on our socks and shoes.  I used to have to pick my leg up with a reaching tool using my arm strength, when the knee wouldn't bend on command, and later when the knee would bend but wasn't strong enough to lift the leg, I would still have to bend over toward the floor and grab my ankle to help lift it up onto my other leg.  Now I can just sit upright on the edge of my bed and lift my ankle up to my other knee just like anyone else, and put my sock and shoe on easily.

I mentioned that first because I didn't want that little detail to once again get lost in the circus surrounding other accomplishments.  And there are certainly huge, fireworks in the sky, dancing in the streets, rainbows and sunshine kind of developments to report today.  Yesterday I had my hour+ long MRI of the cervical and thoracic spine.  My history of panic and terror in these scans is well documented, but yesterday couldn't have been farther from that history.  I stayed up really late the night before so I would be good and drowsy during the scan, and I had one milligram of Versed for my conscious sedation medication, and I listened to classical music in my MRI headphones like Moonlight Sonata and Clair de Lune, and I kept my eyes closed most of the time so I couldn't see how tiny of a space I was in or how oppressively close the face mask was, and I had my panic button in my hand.  This time, for whatever reason, that was enough to give me a completely relaxed, zero panic MRI session.  It was so easy it was almost surreal.  When it was all done I could hardly believe it had gone so well.  Surely this couldn't be the same machine that had reduced me to tears and screams, and this time I came sliding out of it all smiles and enjoying the surprised congratulations from the anesthesia and MRI teams.  They called me a rock star, and I felt like one!  I can't say for sure that I've conquered claustrophobia; I'm pretty sure tight spaces are always going to bother me, but I'm very optimistic that I've developed the ability to manage it better from now on, instead of letting it rule me.

Today my oncologist called to discuss the results of that MRI, as well as the CT scans that were done a couple of weeks ago, and the good news just kept on rolling.  There are no tumors in my liver or lungs, and even with my extra wordy ways I'm not sure I can adequately describe the magnitude of my relief.  The CT scans did show an enlarged lymph node in my chest, but the oncologist said he's not worried about that at all and we'll just keep an eye on it from now on.  Many different things could cause that enlargement, many of those things being "ordinary" or essentially "harmless" so I'm going to do my best not to obsess about that node and trust that if the oncologist isn't worried, I don't need to be either.  

As for the MRI scan, I'm requesting a copy of the report to read for myself, but the passages my oncologist read to me on the phone are very intriguing.  Obviously image quality in the area of my tumor is affected by the titanium hardware in my spine at that spot.  So I'm used to hearing or reading that the tumor boundaries are difficult or impossible to ascertain and therefore measurement is extremely difficult.  But the way he described it to me this time, it sounded like the presence of the tumor itself was hard to identify.  He said they can't declare that it's shrunk or gone, but they also can't say exactly that it's still there or still the same size.  I'm not the kind of person to get wildly excited by these statements, it's not in my realistic nature to embrace the notion that my tumor could have magically disappeared; nevertheless it seems clear that the tumor has not grown noticeably and may even have shrunk, and that's enough to make me very happy indeed.  I will have blood work monitoring and an office visit with the oncologist in three months, and scans again in six months.

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.

Tuesday, September 25, 2012

Walk Softly, and Carry Two Big Sticks

Last week in physical therapy, after my usual workout with the four-point canes, we decided to try standing up and see how my balance was with two single-point canes.  

Standing and balancing with them was pretty different from using four-point canes, but it went well, so we tried a little marching in place.  

Marching in place, because of the need to artificially arrest your natural forward motion, is actually harder than walking in some ways.  So we went ahead and took a few steps.  A 10ft and a 12ft walk, which was a pretty exhilarating way to wind up that therapy session.

Which of course made me want to top it in therapy this week.  So we started today with the four-point canes but instead of walking we went immediately to the ramp, while my legs were good and fresh.  We'd been wanting to try the ramp soon anyway, and we knew I wasn't ready to try it on single-points, so it would be a good warm-up before switching canes.  Walking up the ramp was extremely challenging muscularly, but walking down the ramp was even harder.  You have to really concentrate and trust your muscles to hold back your forward momentum and not buckle or send you stumbling to the bottom.  

After that hurdle was cleared, we went on to the 2inch curb step to see if I could do that.  Stepping is actually much easier than walking on inclines, so that went very smoothly once I forced my mind to trust my legs and take the first step up.  Stepping back down again was no problem.

With two breakthroughs down in the first 15 minutes of the session, it was time to switch to the single-point canes.  I decided to really focus this session on the quality of my walking, particularly the heel-toe motion in my foot, so that my weight would roll into my heel and spread evenly to the rest of my foot instead of clopping my foot down flat.  While requiring a lot of concentration to accomplish this correct foot motion, it turned out to be the key to better balance and efficiency, enabling greater distances to be achieved than ever before with the single-point canes.  Last week had been 10 and 12; I started today's walking with 30ft, rested, walked 33ft, and rested again.  My therapist thought I would want to switch to standing balance exercises at that point, but I was ready for one more walk.  The last one was 47ft!  I was ecstatic.  So was my therapist.  And then we did the last few minutes of standing balance just to finish out the allotted time.

So it was a day of awesome results and progress, and I feel terrific about it.  Who knows what good things Friday's session will bring?

Thursday, September 20, 2012

National Rehab Awareness

I don't often go in for public speaking.  I'm one of those nervous, panicky types who gets clammy hands and sometimes has trouble breathing just from thinking about it.  But when the rehab hospital I receive physical therapy from approached me about speaking at a lunch during their celebration of National Rehab Awareness, I couldn't say no.  Here was an opportunity to reach out to patients and therapists and other community members and recognize how their efforts have impacted people like me, and to hopefully encourage those facing struggles of their own.  Maybe even inspire some people who are just considering careers in medicine and rehabilitation.  It represented all that I hoped to accomplish with this blog: to reach out to others, and through my story of rising up, perhaps lift someone else, too.  So in that spirit, I share with you today's speech, sweaty palms, bad hair day, and all.

Saturday, September 8, 2012

Children of Adversity

I know everyone thinks their kids are exceptional.  And they are, each in their own way.  But most people, by the grace of whoever they're praying to or the kindly whims of fate never have the opportunity to find out how extraordinary their children can be in extraordinary circumstances.  Perhaps it is one of my beautiful compensations for this mess I'm in that I have gotten to see this amazing strength and selflessness in my children, with the bittersweet twist of knowing they bear all this extra burden solely because of me.

What's a typical Saturday morning with kids at your household like?  Do the energetic little ones roust you by surprise leaping into your bed, or with the sounds of their first squabbles of the day?  Do they watch cartoons while you make breakfast and then disappear into their electronic devices for awhile?  That would be pretty normal, I would think.  Today was a pretty typical Saturday morning at our house.

My children accidentally woke me up with their quiet shushing of each other on their way down the stairs.  Knowing they probably want breakfast but I have to go pee, I give my son the usual choice of hanging out in his room or in the basement, so I can have some kind of privacy in the living room where my bed and commode are located.  He chose the basement, and tried to put away the folding chair he'd left out the night before in a moment of "oh yeah" responsibility, but I let him know not to worry about it because I really had to go.  When I was done I called his name softly a few times so he'd come back up from the basement.  I needed a drink of water and I didn't want to wake up his dad yet, knowing how exhausted he probably was from getting woken up several times a night the past few days to help me with my feverish stomach illness.  My son came right away when he heard me, and cheerfully emptied out my "stale" water from overnight and filled my cup with ice and fresh water.  Then he gently marshalled his sisters into the kitchen and started taking their cereal orders.  Oh yeah, he fixes breakfast, and for his sisters first.  

While he's pouring cereal, I tell his sisters that I'm almost better from my many days of bad fevers and soon I'll be able to give them hugs and kisses without germs again.  They cheer, and clap, and chant "Hugs and kisses! Hugs and kisses!" and decide that when I'm all better we will have a hugs and kisses party.  They eat, and it's nice and quiet in the house.  I'm still in that half-asleep phase of waking up.  It's quiet because the TV is not on.  We don't let them watch it before lunch.  No computers or video games before lunch either.  

After breakfast they all take their dishes into the kitchen, and my precious son pauses before the basement door.  "Do you need anything else before I go downstairs?"  The simple question tugs my heart.  So good.  I let him know that I'm good for now, to go play.  "Well if you need anything, call me to come up here!"  This one breaks me, and I struggle not to put on unnecessary waterworks in front of him.  "Okay buddy."  At the last minute he remembers to grab the book he was reading before breakfast and take it back to the basement with him.

I've written a lot about what this past year has done to me.  What must it have been like for them? They went months with only seeing their mother once or twice a week.  When they did see me, I was in a hospital looking like I'd never make it home.  My already pale skin had turned sickly, half my hair fell out, I was a mess.  And I'm sure it helped that I cried a lot, because it was so hard to see them so rarely and say goodbye again every time.  I've had to teach my daughters that getting a broken back is not the normal course to adulthood and ask them repeatedly to stop worrying when it will happen to them because it won't.  I've been home long enough now that they no longer worry whether I'll come back each time I leave for an appointment or therapy, but they used to get sad every time I left, and ask how long I'd be gone this time, and I had to promise each time that I'd be home by dinner.  

Yet each of them has this strength inside, they just ride along with the punches and do their thing.  Their beautiful, helpful thing.  Of course they fight and bicker and drive me crazy sometimes. They spend some time in Time Out now and then, and sometimes get privileges like afternoon video games taken away for this or that.  But most of the time it's Little Bit with the singing of the made-up songs, or Bandit with her uncannily accurate singing of popular songs, and the two of them playing make-believe together, with Bubby reading or playing with legos, and our too-small house is stuffed with the rhythmic peace of those three amazing kids.  Of course I'm getting better, and never give up or lose hope.  What else could I do with such shining examples of humanity around me?

Wednesday, September 5, 2012

The subject of pain

Actually, the subjectivity of pain.  It's very tricky to talk about pain, because we all experience it so differently.  Doctors and hospitals always want you to rate your pain, and this practice is always funny to me.  There seem to be three kinds of reactions in people when you present them with a standard-issue medical pain scale:  1) People who just want good pain meds and rate their pain as high as possible to acquire them; 2) people who have no idea how to evaluate their pain and guess randomly in the middle, typically between 4 and 6; and 3) stoic types who have either had serious pain in the past that forever influences how they rate other pain or else don't want to seem complainy and so rate their pain low.  

I love it when people - even women who have experienced childbirth! - rate their pain at 10 even though they are sitting calmly, perhaps reading a book or watching television, periodically smiling or laughing when something humorous happens, and just in general appear to not be screaming or passing out.  I'm sorry folks, but you are not experiencing level 10 pain.  Even the ones who have experienced childbirth seem to have forgotten that they were yelling and crying at the time.  If you're not yelling and crying now, hmmm, maybe this isn't actually as bad as childbirth, eh?  I had pancreatitis a couple of years ago.  That's an illness where something makes your pancreas really mad, so mad that it tries to kill you.  From the inside.  Seriously.  The pain from pancreatitis, in addition to making me vomit and wonder if my recent surgery incisions were ripping open on the inside, perhaps causing me to bleed internally, also caused me to feel like I was becoming detached from my body, and floating away, as though the pain were literally killing me.  That experience has forever defined pain levels for me, and I call that level 9.  That's right, 9, not 10.  Because I figure that level 10 really would have killed me.  And because I can imagine things that would hurt worse.  By definition, 10 really needs to be the worst possible pain you can imagine, right?  I think being on fire, perhaps getting shot, certain types of complex fractures, and maybe childbirth, among other things, could all be worse than what I felt with pancreatitis.  Not just any fracture though, because I've broken my arm before, and that didn't hurt anywhere close to as bad.  

So when I have pain that's constantly on my mind, inhibits my movements and forces me to seek relief with medications, I call that from 5-7, depending on how restrictive it is, whether I cry, and whether the medications relieve it much.  If I have pain that's tolerable even though I don't like it, and I can get by mostly okay without medications, that's typically a 2-4.  Anything less than a 2 means it's either not constant, or hurts so little that I can often forget about it or ignore it.

But that's how I rate pain.  The problem for medical personnel is that the next person won't rate pain the same way I do.  There have been some rather funny attempts to make better pain scales. I enjoyed this one especially, along with its helpful drawings.  I think perhaps a pain scale that uses analogies we've all experienced or can imagine would be more helpful for medical personnel than the one they're using now.  If I were to give a go at creating a new pain scale, it would be something like this:

0 = Oooh, I found a quarter. Happy day!

1 = Oh darn, I have a hangnail.

2 = This headache just won't quit. I need some over-the-counter sized doses of ibuprofen, acetominophen, or naproxen sodium.

3 = I fell down and bloodied both my knees.  The scrapes sting constantly and I'd really like to find something to get my mind off it.

4 = This is a pretty serious sunburn.  Blisters form, and everything is so tender that I'm careful how I move and would rather not be touched.  

5 = A broken arm or sprained ankle.  Definitely would appreciate some hydrocodone, or maybe the big 800mg ibuprofen pills, and body movements are visibly altered by the pain.

6 = I can't think of anything else but this pain.  I am willing to beg for pain relief.

7 = I can hardly speak because of this pain.  I just gesture wildly for you to bring me morphine. I may also be nauseated by the pain.

8 = Having regained the ability to speak, I now scream for morphine.

9 = A medically induced coma is looking like a really good option here.  I will do anything to escape from this pain, including having an out-of-body experience.

10 = Just let me go toward the light...

Perhaps this will help you the next time you're sitting in your doctor's office being asked to rate your pain.  Maybe don't go straight for the 10, eh?  Try on a 6 for a change, or maybe even a 5!  And of course, the most important part of any pain scale is for it to start a dialogue between you and your medical team.  Give as much detail about the pain as you can, how it limits your activities, whether you feel sick or like your heart is racing, can you breathe through the pain, has anything worked to relieve it, etc.  The more they know, the better they will be at helping you with your pain.

One more thing:  not everyone will reach these pain scale levels at the same level of pain.  It's important to be honest about your pain, and don't assume you should be able to "handle" as much pain as someone else.  When you reach your personal level 6, and you're ready to beg for medicine, you'll know.  It's okay if you reach your 6 earlier or later than the next guy.  It's supposed to be customized to what you need.

Saturday, September 1, 2012

Aches and Gains

This week was extremely satisfying in physical therapy, but the trade-off to that appears to be a lot of soreness and fatigue.  On Tuesday, I greatly surpassed my previous cane-walking distance record by toodling along for 100ft without resting, then following with another 75ft walk.  I also continued working on my standing balance by standing for 3 minutes at a time doing bouncy ball exercises with the trampoline.  

I used to always get lower back aches when standing for long periods at the copying machine or in the kitchen.  "Long periods" in those days meant upwards of 30 minutes to an hour.  These days though, it would seem that 3 minutes constitutes a long period, and after my two days of therapy for the week, I did enough standing to make my lower back ache terribly for the past two days.  Enough to take hydrocodone for it.

Standing and taking enough steps to get to and from my commode is pretty challenging with this much lower back pain.  I think it's pretty clear I over-exerted what my body was able to handle this week, but that also makes it pretty clear that I need to do more trunk strengthening exercises so that I can stand upright and use abdominal muscles to hold my trunk straight without straining my lower back.  So, when my back has recovered enough to not need pain meds anymore, I'll be gently increasing my in-bed exercises that focus on abdominal, hip, and lower back muscles. 

Saturday, August 25, 2012


For just about as long as I can remember, August has been a month for anniversaries.  Many summers ago in a cute Lake Tahoe chapel, carrying a bouquet of blue silk roses I bought her, my mom walked down the aisle to marry the man I'd already taken to calling "dad" and make everything all nice and official.  I immediately began using his last name, proudly, although it would be years later that I made the change legally.

One hot August, while my belly was full and round with my first child, my sister passed away from cancer.  I had the great fortune to have seen her, earlier in my pregnancy, although I had not realized then that it would be the last time.  I certainly never thought that eight years later I'd be embroiled in my own fight with cancer.

A year ago in August, I had my first spine surgery.  And a year ago in August, yesterday and today were the first days I started feeling wobbly, off-balance, and a little bit feeble while walking, and thought I was having a side effect problem from taking Valium.  A year ago tomorrow would be the last day I walked without an assistive device.  By the end of that day, I would be unable to walk at all, and my rehab/physical therapy journey would begin.

Soon that journey will draw to a close.  I have less than twenty therapy visits left, and much has been accomplished.  Yesterday in therapy, using only the two balance canes, I walked first 70 and then 65 feet at a time, and then progressed from two to three minutes at a time spent standing up without any aides, bouncing a ball off a trampoline and catching it.  Hopefully by next August, being disabled will be just another August memory.

Friday, August 17, 2012


Exciting things have been happening in physical therapy lately.  Taking the muscle relaxers once a day has really helped ease the problems I was having with popping and crunching in my fusion area, allowing me to make better progress in my workouts.  

In our continuing efforts to improve the quality of my walking, ensuring I don't lean so heavily on my arms, we made the transition from standing and walking with my walker to standing and eventually walking with a pair of four-legged canes.  The canes force me to keep all my weight in my legs, since they are not designed for support, but only to aid in balance.  Initially, with so much more of the work being done by my legs, my walking distance was very very short, about 8 feet on the first try.  But with additional practice to strengthen the muscles that keep my knees from buckling, I've been able to slowly extend that distance.  Now, after about two weeks of working with the canes, I was able to walk 31 feet without resting. 

On Monday I have my next follow-up with the oncology team.  They will be doing blood work, which if I understand correctly, can help them look for certain markers that might indicate whether my cancer is growing or spreading.  Hopefully we will again find that there are no changes there, and just keep monitoring while I continue to do so well in therapy.

Tuesday, July 24, 2012

Muscles and Bones

Last night I started taking my muscle relaxers again.  My shoulders and lower back of my neck muscles have been really tight lately, making my neck pop every time I lean my chin down toward my chest.  It totally and completely grosses me out to feel it pop, with all the disgusting little cartilage noises and feelings, and freaks me out too, wondering if something is wrong with my fusion or if something could potentially go wrong with it.  

In the process of trying to feel those muscles there, I became aware that there is a place at the top of my fusion scar, right at the bottom of my neck, almost between my shoulder blades, where you can feel either the bones of my spine or the metal hardware through my skin, there's not enough muscle layer covering it up, and this so completely revolted me when I felt it that I almost became sick.  I don't know if the muscle will eventually build back up over it, or if it will keep building on each side as it seems to have been doing so far and still leave this little valley in the center where you can feel that alien, bony hardness under the skin.  

All I know is in those few seconds, I really wished this would all go away and I could just be normal again.  And then I reached for that bottle of muscle relaxers, hoping desperately that if I could just release those muscles enough, the eerie popping and grinding would stop.  I have a CT scan and consult with my neurosurgeon tomorrow, and I will definitely ask him about it then.

Hot Mama

Temperature is serious business when you have a spinal cord injury.  I like to joke about it, haha, I don't sweat anymore, but in reality it can be very serious and it doesn't take extreme temperatures to make a problem.  

Here's an example:
Our electricity went out the other day, in the hottest part of the late afternoon/early evening.  It was 102F outside, but with air conditioning we'd kept the inside of the house in the low 70s.  The power was out for less than two hours, and during that time the internal house temperature crept up to around 77F.  When the power came back on, it took the thermostat another three hours or so to cool the house back down to around 74F.  Not too bad, really.  But for me, it almost was; during the time the a/c was out and the period needed to cool the house back down, my internal temperature went from my normal 96.5F to 99.5, and we had to use cold wash cloths on my skin to help cool me back down.  

If a couple of hours in temps in the high 70s can do that to me, imagine what could happen outside in the real heat, or on 30 minute car rides where it takes 15 minutes to get the vehicle cooled down, or in crowded buildings where the a/c can't keep up with the quantity of people coming and going.  My body's natural responses to temperature change don't work; I not only don't sweat appropriately, my blood vessels don't dilate to allow my body to cool off.  The temperature signals either aren't reaching my brain, or the responses from my brain aren't reaching the rest of my body.  It's something I have to constantly be watchful for, and the same will be true when it turns colder, and the risk of hypothermia replaces the risk of heat stroke.  I found that out in the cool of early spring, when I realized that my brain, being accustomed to not getting the right sensation signals from my feet and lower legs, essentially ignored them as I got colder while sitting outside, so they got less and less blood circulation and became deeply chilled and sluggish.  They would take hours to warm back up after I came inside, so I learned to be careful to keep them warm when I was out and not to stay out too long.  The last thing I need to add to my problems is frostbitten toes!

Thursday, July 12, 2012

Supper Sitting Up

Tonight I decided that, thanks to that stomach flu, I'd been spending quite entirely too much time in my bed lately, and that I would eat my dinner sitting up in a chair instead of sitting up in bed.  This might seem like a "duh" sort of moment to most people, but most people don't experience the kind of pain I usually have when I'm sitting up in a chair.  Several days of only getting up for potty trips were making my tailbone cranky, though, so a foray to a dining room chair was in order.  

I sat up for the duration of my meal, and as long as I could tolerate it afterward, and for a pleasant change, it wasn't pain that drove me back to bed, it was being too chilly and needing to get under my blankets!  So this was a victory for pain-free eating, and I hope, a sign of more meals that I'll be able to enjoy sitting up like a normal person.  Plus I got to half-way dance with my husband while I shuffled around from the chair to the bed, holding onto him instead of using my walker.  And of course, showing off a few more of my new hands-free stand-ups.  :)

Wednesday, July 11, 2012


At some point on this journey, apparently, I have accepted certain realities about my illness.  I realized it today when I had two particular thoughts (I know, two thoughts! In one day even! My brain is on overdrive...): 

1) I wish I didn't still need so much help; and 
2) Wow, I used to wish none of this had happened to me.  

Somewhere along the line, without my realizing it, there has been a subtle shift, so that wishing I never had cancer or never injured my spinal cord now feels about as useless and silly as wishing a cup of water didn't get spilled yesterday or wishing it would rain.  There's nothing you can do about the past and things you can't control.  My wishes and hopes now reflect things that maybe I can change, and actively pursue, like becoming more independent so that other people's lives don't have to be restructured around me and my needs.  Finding a ranch-style house, and a way to afford it, so that my family and I can live on the same floor, with a bigger kitchen so I can get in and out of it with a walker and/or chair and be able to make some simple meals again.  So that my husband and I can share the same bedroom, without having to make elaborate plans for energy conservation and trips up and down stairs being part of the equation.

Lest you think I've completely abandoned unreasonableness, though, I must admit to spending much of the past three days fervently wishing I didn't have the stomach flu, despite knowing that wishing wouldn't change it.

Wednesday, June 27, 2012

So Long, and Thanks For All the Music

On Sunday, my husband's grandmother slipped peacefully from this life into the next.  She was a talented, fun-loving and kind-hearted woman, with a bit of sassiness to her now and then.  Along with her musically gifted daughter (my mother-in-law) she taught me to play the auto-harp, although I never gave those strings the vibrant life that she did.  I think I remember most fondly her crinkly-eyed smile and easy laughter, and the attentive, active way she enjoyed listening to and performing music.  Some people seem to kind of space out when they enjoy music, but she was always right there with you, in the moment, encouraging you to express yourself or being fully engaged in her own expression. 

Because she was the type of lady who didn't want everyone to make a big fuss over her, she had decided to have a simple, small graveside service for her family's farewells.  She didn't want to have a big traffic-stopping procession of cars traveling through town from a church to a cemetery.  Unfortunately, this is a situation in which Spinal Cord Injury (SCI) rears its big ugly head.  The forecast for her Thursday morning service indicates an excessive heat warning, temperatures are likely to be in the nineties by the time her mourners assemble, and while most people will find that swelteringly hot and uncomfortable, for me it would not be a discomfort, it would be a medical crisis.  SCI means I can't properly regulate my body temperature; my blood vessels don't dilate properly, my body doesn't sweat the way it should, all the natural cooling mechanisms, and even the sensors that would sound the alarm bells in my brain, aren't working.  Within minutes I would start to get a headache, feel sick and thirsty, get confused, and soon after take very ill.  By the time my brain got the idea that I might be too hot, however, it would be well into the realm of heat stroke, and it can take hours to cool the body back down, outside of emergency measures like ice baths.  Everything I read says it's not safe for me to try to attend the service, and with all that we've been through this year, I've got to play it safe.  So my husband, who admittedly faces any kind adversity or sadness more stoically when I'm by his side, will have to stand tall and strong for his mother without me, and face his own grief, and that of his children, without my presence to comfort him.  Oh, I'll be close by, probably, in some air conditioned building perhaps, or waiting at home for his return, but when that moment to say goodbye to her comes, I won't be there holding his hand.  It breaks my heart.  He's been here for me through the toughest of times, and when he needs me, I'll be hiding from the sun and the heat.  

But...maybe Grandma has one last thing to teach us.  My husband's grandfather was the love of her life, and preceded her in death by about eight years.  Yet somehow she managed to soldier on, to find joy, to cherish her family, to laugh and sing and play, for years after his loss left that gaping hole in her life.  If she could do that, maybe we all can.  Maybe we can comfort each other even when we're apart, accept that sometimes, we'll have sorrow, and then embrace life with gratitude anyway.  I don't have to faint at her graveside to honor that spirit, nor to say my loving bon voyage to her.  So long, Grandma, and thanks for all the music.

Saturday, June 16, 2012

Still Laughing

I was in tears from the pain by the time I got done with therapy, used the commode, and got myself back into bed yesterday.  I cried again when my husband massaged my tightening ankles and the backs of my lower calves trying to help save me from losing flexibility and sensation in my ankle joints, because the skin nerves are so hyper-sensitive that while the muscles and tendons desperately need to be worked over, the skin above them feels like it's being split open and peeled off with every massaging stroke.  After I had calmed down and recovered from the massage a little bit, I cried one more time, sitting in my bed watching my ankles flex and draw out some shapely muscles in my calves and thighs, because I can still remember sitting in a hospital bed six months ago when my legs couldn't do that, when I strained and strained to pull my toes back and got nothing more than a spastic wiggle from a single toe.  I remembered how flaccid and repulsive my unresponsive legs appeared to me back then, and wept over how muscular and toned they are by comparison now.  Still plenty more muscle building to do, they don't exactly look normal yet, but so much better than they were, and for that improvement, that seemed almost unreachable back then, I cried for joy.

I still find things to laugh at, though.  There's always humor lurking if you're looking for it.  Yesterday's levity came from a bottle of hand sanitizer.  At home our bottle likes to enthusiastically splat several inches further out than the expectant hand is prepared for, and the bottle my therapist grabbed for me at the end of our session yesterday is apparently no different.  While I held one palm out to her and grasped my cup of half-full water (not half-empty) in my other hand, she went to squirt me with some gel and it came flying out of the bottle, dropping several blobs on my clothes, and a nice big plopping splash of it in my water.  We both had a good laugh, and she judiciously offered to get me a new cup of water.  So there I was in a blue dress, frantically trying to wipe up slimy wet messy splats off the front of it, and I couldn't help thinking, just like poor Ms. Lewinsky!  But with much less disgust, and a lot more laughing.

Wednesday, June 13, 2012

Breaking the Silence

It's been about two weeks since the car accident.  I have kept pretty quiet during this time, evaluating my situation and seeking out legal advice.  There have been too many effects from this accident, and too significant, for me to ignore.  I had hoped that by now the effects would have diminished, or cleared up completely, but they haven't.  So I have retained legal counsel to represent my best interests in settling my personal injury claims against the insurance of and the driver who hit me.  

How do you distinguish the way I was before the accident from the way I am now, you might wonder?  It's easy to dismiss the impact if all you see is the general picture.  I was in a wheelchair when it happened, I still require a wheelchair now.  I could walk with a walker, I still can now.  I've continued to make important progress in physical therapy.  So everything's fine, right?

Wrong.  You see, that's just not enough detail to understand what's really been happening.  The number one impact of the accident has been pain.  So much pain.  But I was in pain before, you might argue.  That would be true.  But fortunately the medical profession has decided it's useful to measure pain on a scale, and so we have a handy tool for identifying changes in pain levels.  Before the accident my daily, average pain was at a level of 2-3.  At that level I choose to abstain from narcotic pain medicines and could function optimally in physical therapy.  After the accident, my daily average pain level has not gone below 4 and is most often between 5 and 6.  That's twice as bad.  At that level I need narcotic pain medicine on a daily basis and my ability to achieve goals in physical therapy is dramatically impacted.  In addition, my power chair is still in the repair shop, and without it I'm stuck in a manual wheelchair that doesn't recline at all, and the backrest doesn't come all the way up my back, so it causes me pain the whole time I'm sitting in it and restricts my ability to get out of the house or spend time out of my bed.  In a power chair I can get in and out of the house all by myself; in a manual chair I have to have someone to help leverage the front caster wheels over my front door threshold, requiring a second person to stand behind me and pop a wheelie as I go through the door.

The impact on my therapy performance is a significant problem when you consider that medical insurance will only provide a specific number of physical therapy visits per calendar year.  I had objectives that we were hoping to accomplish before my visits ran out and now, with my performance diminished by pain and the resulting decrease in stamina, some objectives will be out of reach unless I can somehow extend my access to physical therapy.  These aren't just generalizations, either, I'm not just speculating that I'm 'probably' not doing as well as I would have been without the extra pain.  There are measurable differences in my performance at therapy.  Before the accident I could walk with my walker for 168ft without having to stop and sit down to rest, and I was adding anywhere from 20-50ft per week to my previous records to reach that point.  A couple of days after the accident when I returned to therapy the furthest I could push had dropped to 105ft.  Two weeks after the accident, through tremendous effort and a lot of pain, I've still only regained up to 125ft at one time, way behind where I was before the accident even all this time later, and only gaining about ten feet per week.

Of course, there are still highlights.  I never sit back and take it easy, it's not in my nature, and being hurt in a car accident does not lessen my burning desire to get back to a more normal, active life.  So of course I've continued to make progress in therapy, including pushing beyond a handful of practice stairs until I can now climb a full 12-step flight of stairs, rest at the top, and then come back down.  It's a tremendous step forward, but it comes at a great price; accomplishing those stairs raises my pain level to 6 every time, and it takes at least a day afterward to recover from the muscle fatigue in my legs and get my pain back down to a 4 and 5.  I continue to extend the total distance I can walk within a therapy session, which is good, but because of my diminished ability, this is done in shorter segments with longer rests in between; instead of walking 440ft in one or two really long walks, I have just now accomplished walking 440ft in four shorter walks.  

I have an altered sense of numbness in my right foot.  Due to the nature of my spinal cord injury it is very difficult for me to assess if this is a worsening of sensation in that foot or an improvement in sensation in the left foot; I can only tell that they no longer feel the same and one doesn't work as well as the other.  That and other nerve-related symptoms will be discussed with my neurosurgeon when I see him on Monday, and I think it's very possible that he will recommend MRI to evaluate whether the accident has caused any changes in swelling or affected the tumors at all.

Lastly, there is an emotional component to this accident, for which I was not prepared.  I knew I would likely be in pain from it, although I thought the pain would go back to 'normal' by now.  I knew there could possibly be swelling or other nerve damage that might cause problems, and mentally prepared myself for those issues.  But I didn't realize that I would be terrified every time I get in the car from now on, flinching from every minor swerve, gripping my wheelchair arms until my hands turn white and feel numb while frantically watching the vehicles on all sides of me and hoping none of them makes any stupid mistakes.  I didn't know this fear would compel me to stay home more, to pass up on outings I might otherwise have considered, because 'out there' I'm so much more vulnerable than 'in here' at home.  I didn't know I would have nightmares in which I relive the accident, and wake up sweating and afraid.

So yes, I've been down, and I've been kicked while I'm down, but I'm still kicking back, and I'm not going to sit here and let someone ruin everything I've worked for.  I've discussed this blog with my attorney, and with the understanding that nothing I say here is any different from what my medical records will show, have been advised that I can keep writing.  No more silence.

Wednesday, May 23, 2012

T-boned. Seriously?

Today on my way to physical therapy, the transport van I was riding in was t-boned by a brainless idiot who apparently failed to notice our enormous white vehicle's presence on this sunny day, on a street with no trees or other visual obstructions.  We were traveling between 30-40mph and were knocked completely out of the lane we tried to swerve into in our attempt to avoid the menace blindly plowing into the lane we had previously occupied.  The impact, which occurred on my right side, destroyed the double doors on the side through which I enter and exit the vehicle, broke some kind of brackets on my power chair, smashed out the glass on my left (coating me in broken shards and tiny flakes), bent the headrest, and gave me seat belt burns across my throat because my body slid downward and forward until the shoulder belt arrested my motion at the neck.   I got to see them use the jaws of life to open up the side of the van, where luckily the wheelchair lift ramp still functioned so I could get out of the vehicle.

Setting aside how mind-boggling it is that anyone could manage not to see us and drive straight into the side of our vehicle, I'd just like to ask, WHAT THE CRAP?!  Why on earth did this happen??  How could it be that every time things start to go right something else goes wrong??   Tomorrow my husband will have to take my power chair down to the supplier and hand it over for repairs, which, being funded by automobile insurance, will take who knows how long to sort out.  I'll be stuck back in my manual chair, which is not nearly as comfortable for multiple-hour use and also involves me or my caregiver expending tremendous energy in propelling me around.  I had x-rays done to make sure my spinal fusion rods and pins were holding together properly, and they looked okay, but there's no way to tell if muscle and or nerve damage in my back may yet cause swelling or weakness or other problems that hinder my recovery. 

The friction burns on my throat are starting to blister and ooze.  Time to call the home health nurse.

Looks like I'll be spending the evening wearing a gauze scarf.  And maybe take a hydrocodone.  Say yay.

Monday, May 21, 2012

We Did It!

Life keeps throwing us curve balls, and we keep hitting them outta the park.  When we got home from the oncology appointment today I literally felt like singing that silly little cartoon song.

First, when we arrived at the building, we tried to park in the garage instead of the lot in front of the main entrance.  This, we thought, would be more out of the way considering it takes 15-20 minutes to get me into and out of the car (mostly wheelchair loading time).  We were alarmed to discover that the brackets that hold our ramp and wheelchair onto the trailer hitch on the back of the car scrape the ground on the steep ramps of the parking garage.  We exited that nightmare as slowly and carefully as we could, with me cringing every time I heard the sound of metal grating on pavement.  

Next we drove back to the main entrance, and determined there was no other option than to basically block one section of the narrow horseshoe driveway in front of the building while we got me unloaded.  Only, when my husband tried to unload the wheelchair, the bolt holding the clamp that keeps the power controls and steering joystick attached to the armrest had come apart, and the power controls were just dangling by their cord.  Hubby swore under his breath, picked up all the little bolt and washer and lever type pieces he could see, and somehow managed to drive the thing down the ramp and bring it around next to the car so I could get in.  He had to hold the power console while I got out and sat in the chair, then I held it in my lap and struggled to steer myself inside while he packed up the ramp, and carried in my walker for me.  We got checked in for my appointment and did the blood draw for the lab work portion, and then hubby whipped out some pliers and got to work.  It was nearly impossible to hold the many tiny pieces together while trying to attach it to the chair arm, but he finally got it when I helped hold them in place while he turned them.  We called the chair company and left a message for repair help to make sure everything's in place securely anyway, but it appears that we fixed it pretty good.  One hurdle cleared!

A few minutes later, it became clear to me that I would need to use the restroom before we got back home.  We still hadn't seen the doctor yet, and had ten minutes until my appointment time with him, so I asked the receptionist if there was an accessible bathroom we could use where my husband would be able to come in with me.  She recommended coming around back to the patient restrooms instead of trying to use the more public, multiple-stall restrooms in the building's common area, so we followed her back there.  I have been wanting to work on public toilet transfers in therapy, but we haven't gotten to it yet with all the walking and stairs I've been doing, but I was pretty confident my husband and I could figure out how to accomplish it safely.  It took some delicate driving to get the power chair in the door and get the door to close, then hubby had to move the garbage bin, but then we were able to get me in good position to stand up with the walker, take a step or two towards the toilet, turn around, drop my drawers and do my business.  Just in time, too.  I was worried the toilet would be kind of low to stand up from, but with one hand on the wall rail and one hand grasping my husband's for leverage, my knees had no trouble getting me up off that throne.  Drawers back up, walk forward, sit back down in the wheelchair, and we were ready to re-do the dance with the garbage bin so I could get my chair up to the sink.  Once we were all washed up, hubby folded up the walker and held the door open while I came out, just as the nurse was looking for me to take me into my appointment.  Second hurdle cleared!

We got to enjoy the impressed amazement on Dr. Chemotherapy's face when he heard about all that I've been able to do so far in physical therapy, and he confirmed the assessment of Dr. Radiation regarding my April MRI.  No growth, no shrinking, although he feels that we are still within the window that we may yet eventually see positive changes as a result of the radiation.  Then, the best news of the day:  Dr. Chemo sees no reason to begin chemo at this time.  He shares my concerns about how it will weaken and sicken me, and said that I was already doing the most important work that could be done for me right now:  getting myself up to "fighting" strength.  My cancer has a very low cell turnover rate, 5% on the scale they use to measure such things, compared to really aggressive, fast-growing tumors that could be rated above 90%, so he feels safe in continuing to monitor my progress and not do anything to slow me down at this point.  

So, we'll see him again in August.  The results of today's blood work should take about a week, and they will call me with any information about that when it comes in.  They will do blood work again in August, mainly to monitor my liver function.  Which reminds me, I asked Dr. Chemo about the stage of my cancer, because people sometimes ask me that.  Apparently staging is determined by whether or not your cancer has metastasized, so mine is unstaged because we have not determined whether that has happened or not.  He explained that we could do expensive imaging to go looking for other tumors in my body, starting with my liver since that is the most common location for this uncommon cancer, but knowing that wouldn't change our treatment plans.  We wouldn't rush off to start systemic chemotherapy just because we find cancer in my liver, because it would still be complicated by my potential blood clot issues (they are redoing those blood tests today) and we would still be waiting for me to get stronger before we attacked my body in that fashion.  So there's really not any point in trying to figure out whether my cancer has metastasized, but we will keep monitoring things like liver function to keep an eye out for signs of potential trouble.  I also get my blood oxygen saturation checked every time my home health nurse visits or I visit the doctor, since lungs are the other most common place these tumors like to hang out.  So far, all seems to be well there, too.

We made it back home without any more snags, and were feeling pretty damned pleased with ourselves.  We won't have to head back to the oncologist's for another three months, and by that time I might not even need a wheelchair to see him.  Maybe my husband's favorite part of the whole outing:  Dr. Chemo agreeing with him that we should try to get out and see a movie.  Hubby's had his eye on The Avengers.  Perhaps we'll give that a shot next weekend, we'll see!