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!

Sunday, May 20, 2012


It's hard to anticipate big, scary, important moments that don't....exist.  Like tomorrow, I have an appointment with my oncologist.  I'll have some blood labs done, and then talk to him.  But the way I understand it, we won't be able to make any serious decisions until the results of the labs become available, which may take several days.  So while we have weighty choices to consider, and I do intend to have him elaborate on them, we can't really choose anything tomorrow, so there's all this anticipation with no real payoff.  Of course, it's the first time I'll have seen him since the Big Disappointment, i.e. the MRI in April that showed no growth (yay!) in my tumors, but no shrinking either (boo!).  So I'll ask him for any observations he has about the images, and show him that I'm walking with my walker now, which he'll be pretty excited about, but at the end of the day, we'll still just be... waiting.

Good thing I'm coming off such an awesome weekend, then.  We had great success yesterday with our trip to the hair salon, got my shaggy 'do all lopped off, and covered the grocery store as well.  It's an exhausting process for my husband, who has to spend all kinds of extra effort and time loading and unloading my wheelchair and walker at every stop, and it ain't exactly a picnic for me to get in and out of the car over and over again either, but we both pulled through like troopers and the prize - shopping together, the five of us, instead of separate - was definitely worth it.  With practice, we'll get better and better at it.  As we say in the gaming world, we got this shit on farm.*

*meaning, we are capable of executing the strategy correctly in a repetitive, consistent fashion and obtaining the desired results.

Saturday, May 19, 2012

Hair today, gone tomorrow

Today the family and I will attempt to go out of the house, with my power chair, and drive to our favorite inexpensive hair salon to finally get my hair cut.  It's been growing shaggier and shaggier since I first got it cut short last fall, and now has become completely unruly and annoying.  This is a natural feature of having naturally curly hair.  It goes everywhere, such as your eyes, whenever the wind blows, or if the sun rises, or if a butterfly flaps its wings in Central Park.  Besides, it's now long enough to cover the back of my neck again, and in my new poorly-regulated-temperature body and our almost summery spring weather, this makes me perceive myself as feeling far too warm.  Actually anything above 71F feels uncomfortably warm now, and anything below about 68F starts to chill my legs and feet to a dangerous level wherein my brain thinks we're getting frostbite and stops sending them any blood, so my window of happy temperatures has become distressingly narrow.  But I digress...

My plan is to make sure I've gone potty first, so I don't have to go while I'm out, and to bring the walker with me.  If the chairs look reasonable to stand up from, I'll use the walker to switch from my power chair to the salon chair.  If they don't look like I can stand back up again from them, we will have a big trash bag to cover the back of my power chair and try to keep as much hair off it as possible.  If everything goes well at the salon, we might also go to our friendly neighborhood Super Giant Store to do a little grocery shopping before coming home. 

It has been around five months, maybe even six or seven, since I was able to go grocery shopping with my family.  In the happy-go-lucky time before I had cancer.  Back then, whenever I went to the store with them, I used my walker and the store's motorized cart.  This time, I'll be in my own, more comfortable power chair that steers much better and in smaller spaces than the store cart.  I can hardly wait!  I can pick what I want right off the shelf without poor hubby having to read the selections aloud to me over the phone WOOHOO!

And don't worry, if any of today's plans prove too exhausting to attempt on account of how extremely sore I am from this week's therapy work-outs, we will prudently split them up and do some today, some tomorrow, to avoid potentially fall-inducing, leg-buckling fatigue.  I'm excited, but not stupid!

Monday, May 14, 2012


I continue to climb to new heights of achievement.  I even surprise myself sometimes.  Today in therapy I started out with using a walker in the hallway.  First segment, I walked 66 feet before resting, besting my previous record by more than twenty feet.  And that's just the beginning.  After that rest, I turned around, and aimed to walk back to where I started, maybe further.  Maybe, indeed.  I walked to where I started, then on to the end of the colored tile pattern in the floor, and then on to where the tiling stopped at the carpeted entrance to someone's office.  It was a full ninety feet.  I walked 156 feet in just two segments.  It took four segments to get to 140 last week.  

And we still weren't done.

Of course, I had to have another rest before we continued, and a drink of water.  After that we discussed the mechanics of going up stairs, with the therapist demonstrating the positions he wanted me to use with the walker, and how to place my body in relation to it, for maximum balance and stability.  Then I got up and stepped onto a two-inch stair.  Twice.  Combined with all the long distance walking, it was enough to completely fatigue my legs so we called the session early at that point; my knee joints were too wobbly and shaky to do anything more safely.  I felt like the queen of the world, like I could have high-fived everyone in the room if they weren't already busy trying to achieve their own goals or assisting their patients with that endeavor.

There's just one tiny little problem with all this phenomenal progress.  The higher I climb, the more I realize I'm perched on the edge of the cliff.  I have done all this before, and lost it.  I completed physical therapy, made the arduous progression from standing to walking to stairs, only to find myself flat on my back again days later.  Am I paralyzed with fear of losing it all again?  Do I agonize over it every waking moment?  Hell no.  But I'd be lying if I didn't acknowledge that in the back of my mind, a tiny voice begs to be saved from that fate, from having to start over one more time.  On Monday I meet with my oncologist to discuss our options and plans for chemotherapy.  A major factor in my decisions on that subject will be the very real threat such treatment may pose to my strengthening body.  I didn't come this far to let a bunch of chemicals destroy my stamina and muscles.

Mother's Day

I have three of the most incredible reasons to survive cancer and get back to an active life.  The youngest are identical twins, lookalike girls with pixie smiles and soft blonde curls.  Their blue eyes are huge and full of emotion at all times, at every level from joy to mischief to sadness to remorse, except when they are zapped into the TV and the rest of the world fades away.  Like most four year olds, they are quick to laugh, to cry, and to break out into completely random songs about whatever is currently going on around them, like my own personal musical troupe.  They have a hysterically funny booty-shaking dance.  They love to climb up into my bed and give me hugs and kisses and rub nosies, and to my great personal pride and pleasure they like it best when I brush and style their hair, not Daddy.  They dress themselves, are about 90% potty trained, can count to a hundred by ones and tens, are learning to read and write, and can ride manual scooters and trikes; they love coloring, dancing, music, dinosaurs, princesses, and finding ways to be different from each other.  They think it's really funny that people have trouble telling them apart, but those of us who love them don't have a problem.  One is more immediately outgoing, loves making formal introductions between people that she knows (even if they already know each other), will hug absolutely anybody on first meeting, and has a mind-bogglingly amusing pirate argh face.  The other likes to pretend to be shy because she knows people think that's cute, but after a few minutes she usually forgets to keep acting shy and her actual confident personality comes out, showing how brave and even downright bossy she sometimes is, quick to stomp her foot and pout when she doesn't get her way, with a keen understanding of the emotional weapons she possesses:  it's not uncommon for her to demand threateningly of her sister, "Do you WANT me to be SAD??" if she's not getting what she wants by other means.  Her surprisingly unselfish (most of the time) sister will usually give in to keep her happy too, something we parents keep an eye on and sometimes intercede on her behalf.  They are like two sparkling gems, cut from the same precious stone but differently faceted, so each shines uniquely.

As amazing as they are, it's hard to believe their older brother could compete in the awesome department, but he does, maybe even outshines them.  From birth he was special, never colicky or hard to please, never noisy and fussy in public places, always calm and easy to be around.  He made first-time parenting a relaxed and smooth transition for his relatively newlywed parents.  He didn't have any frightening or complicated childhood illnesses, potty trained quickly, and rarely had disciplinary issues.  Now as the oldest he's an almost tireless helper, hardly ever lapsing into typical childlike selfishness but instead almost always sensitive, thoughtful, and volunteering to assist in good spirit.  How many 8 year olds do you know that can cover the spectrum of everything from artistic mother's day crafts to helping rearrange their mother's bedside commode furniture so she can go to the bathroom (with his back resolutely and politely turned to afford privacy) without having to wake up his dad from a well-earned nap?  He probably helps me grab things at least half a dozen times a day that are out of my reach when I'm in my bed or wheelchair and almost never complains about it.  He gets frustrated with some of my overprotective rules like not letting him play on a neighbor's trampoline where there's no adult supervision and too many kids jumping at once, but that's because he really has no idea how terribly precious he is to us, how unthinkable it is for me to let him play three backyards down where I can't protect him from the things that terrify me like kidnappers and broken arms and concussions.  Sometimes he lets his sisters come into his room and play with him, and he sets up their tray tables at dinner, and cuts the tops of their popsicle wrappers for them, and reads to them.  He loves all the things his dad and I love, like race cars, dinosaurs, doughnuts, Transformers, Minecraft, and World of Warcraft.  Seriously, how did we get a kid that good??  He's uncannily wonderful. 

So of course I had a great Mother's Day.  Any day I get to be the mother of these munchkins is a great day.

Saturday, May 12, 2012

Strange Reunions

Last night I was reunited with my old friends, my second family really, from the place I used to work.  In some ways it was bittersweet, because I miss them all so much and had been so saddened that this roller coaster I'm on forced us to separate.  But mostly it was sweet, and even surprisingly exhilarating.  I was out of the house, with my husband and kids, in our own car!  How is this possible, you ask?  Well there have been some major progress steps taken, I can assure you.

Let's see.  When we last left off, I had just started walking in the parallel bars.  Of course that could only satisfy me for a limited time, I mean it's such a short distance and then you have to back up and start again.  I wanted more, as I always do, so we simply had to move on.  To get out of the bars and walk with a walker.  As usual, I had mentally prepared myself to be patient, to expect great struggle and not be too hard on myself when it didn't go as well as I'd hoped.  And it was a great struggle, every step was a struggle, and yet it went better than I'd hoped, I walked a combined total of 87 feet the very first day of trying it!  Each therapy day after that I pushed to go farther.  125 feet.  140 feet.  

Then there was the invitation to this party at work.  I talked to my therapist, and we decided to try practicing car transfers, to see if I could walk away from my chair a few steps and pivot my way into the space between the car door and the car, and then sit down into the car and pull my legs in.  It went very well in therapy, we practiced it twice to make sure I was comfortable with it.  Then we approached the curb, since we were already outside.  I was at first really gun-ho to try stepping up onto the curb, but when I was actually standing in front of it, trying to balance while I lifted the walker up on the curb, realizing how hard it was going to be to push up onto a step at least four inches high, and probably closer to six, I had to admit I wasn't ready.  We would need to practice shorter steps in the therapy gym first.  So instead we went around to the ramp part and used the walker to go up the curb ramp, my first time on an uphill slope since I started walking again.  It was very difficult and I felt great to get that done, even though I hadn't been able to step onto the curb. 

From therapy I headed home to rest until party time.  I knew I'd need my strength back to do a couple more car transfers.  After hubby came home from work, we got ready to go and headed outside.  Getting into the car takes at least twenty minutes from start to finish.  I have to drive my chair up to the side of the car, use the walker to get into the doorway, and get in.  Then hubby loads all the kids in, and buckles them.  Then we back the car down the drive way because the driveway slopes down too far at the back of the car to load the wheelchair.  At the flat space in the culdesac, hubby can put the ramp down and load the wheelchair onto the trailer hitch mount on the back of the car.  Then he straps and buckles it down securely, making sure all the loose pieces like the legs and seat belts are either buckled or stowed inside the car.  Then we were finally ready to leave the house.  

I could tell people were really surprised to see me at the party.  But more than that, they were really surprised to see me looking so... normal.  I mean aside from sitting in a large power wheelchair.  I think when people hear that you have cancer, and have gone through radiation, they build up an image of you in their minds, a sad image.  I think maybe they were expecting me to look more frail, wasted even, and to have less hair and appear more...sickly.  I have lost some hair, but not that much, and I'm gaining strength all the time, not getting weaker.  So it was oddly affirming to see the happily surprised looks on people's faces, to give them that sudden hope that maybe I'm not so badly off after all.  And fun to tell them of my walking progress, to reassure them that I haven't given up on anything, I'm still pushing myself every day to get back the life I want.  

In some ways, seeing them was a sad reminder of all that I'm no longer a part of.  But mostly it was just really, really good to see them, to share those hugs and handshakes and reconnect with people I've really cared about for a lot of years. 

Tuesday, May 1, 2012


That's all I wanted to do.  Marching in place.  I was determined to be realistic about this goal, mentally preparing myself for the probability that I would not be able to put all my weight in one leg and lift the other one up right away.  This would take several therapy days' worth of attempts, I told myself, so that I would not be disappointed when I strained to pick that foot up and nothing happened.

Except the foot came up like it was nothing at all.  It was so easy it almost startled me.  I even told my therapist, "Um...that was almost... easy!"  And she could tell from the way my knees felt as I marched back and forth from one foot to the other that they were steady, unbuckling, and strong.  "I think we can do more," she said.  And boy did I!  After completing three sets of five marching reps, she flipped on my wheelchair power and nudged it forward along behind me while I walked the entire length of the parallel bars.  It was the first time I have walked since about December 29th.  

Since then I've allowed myself to take a step here and there at home too, like when I'm commode transferring and I want to pivot my body slightly, or I'll stand for a minute and pull up my own underpants, even using both hands for a few seconds at a time while I just balance on my legs, pushing their strength as cautiously and safely as I can, turning each milestone into a useful skill.

Walking was such an incredible surprise.  I had thought I was months away from walking, and now, in those handful of steps, the entire world of walker-assisted walking and not needing a wheelchair full-time is suddenly within my grasp, within the reachable, near future.  I feel compelled to hurry up and get there, that ability to get around my house with a walker; to reach it and enjoy it for awhile, quickly before the looming threat of chemotherapy and it's potentially weakening effects slow or reverse some of my progress.