The Scott Times

Lew thinks I asked him to bring the rubber mallet into the house because I needed to knock a bracket loose on my new chair. I really wanted to have the mallet handy for the next time I suggested he take an anti-nausea pill before dinner and he says, “I don’t want to take anything this late.” Grrrr! (Now, for those of you who thought I was going to refer to the quality of my cooking . . . Well, you can just close your browser right now.)

I’m doing great with my new chair. Thought I was ready to switch over to it this weekend. I pulled out the bucket of tie-wraps, a big box of Velcro, and packages of pipe cleaners. Then I rethought my plan. There was this one adjustment I wanted to make to the back first. Oh, so much better. Okay, now the seat feels too short. I needed to move the entire back assembly backwards. Comfy! Alright, now the footrest assembly can slide back. Aw, shoot! I’d have to drill holes in the seat frame to move it back. Humm . . . by reversing the brackets, it would move back an inch.

So, I’m going to have to wait until next weekend to switch chairs. This week is pretty busy with radiation and doc visits.

Radiation seems to be working on Lew’s hip. He hasn’t taken even a Tylenol in the last couple of days. But its wiping him out. He’s going to bed for the night at 6:30 and gets up at 6:30 in the morning to take Benny to the park. When the come home, Lew crawls back into bed for a couple of hours. After mid-day radiation, he’s napping almost until dinner is ready.

Poor Benny. Lew’s cut his walking in the park in half. They’re not going to the dog park after lunch. And their after dinner walk is a bit shorter. Even worse — all I ever do is take him to doctors’ offices.

Benny’s protectiveness of Lew has grown quite a bit. He’s started whining in the waiting room at radiation. He doesn’t understand why he can’t watch over his daddy all the time. I tried to distract him with training treats on Friday. Didn’t work very well. Let’s see . . . tomorrow . . . Cheese? Hot dogs? It’s too late to bake cookies . . . We don’t have any cat food . . .

Oh! Did I mention that I caught Lew giving Benny a McDonald’s sausage biscuit? Now, where’s that rubber mallet?

Lew took one look at his bone scan and said, “Now maybe they’ll believe me when I say I hurt!”  He was mad at Dr. Radiation Number . . . Oh dear, I’ve lost count.  I think, maybe he was number six.  Anyway, Dr. R-6 didn’t want to start the radiation treatments before getting a new bone scan.  We were both happy that he was ordering a new scan since it had been a year since the original one was done (time flies!).  We really were eager to compare a current scan with last year’s scan.

I took one look at the scan and lied, “Looks pretty good!”  See, I’ve written myself into a corner.  Lew likes to read my blog.  A couple of times he been upset with what I’ve written.  So, I posted the picture from his scan and didn’t comment on it.  My first thought was, “Can they shrink the cancer without pulverizing his thigh bone socket?  Is the only thing holding the bone together the tumor?  Will they be able to repair a broken hip?”  And on and on I went.

This afternoon, we met with Dr. Radiation Number 7.  He spent some time going over the scans with us.  I pointed to the cluster of spheres just above the big black area and expressed my concern about attacking those too, while we’re at it.  Dr. R-7 was concerned that the area may have been treated during the series three months ago.  They’d do a CAT scan and map Lew carefully to see if they could treat that area safely.  I made a point to stress that Lew was in a lot of pain and that he had wanted to start radiation last week.  I wasn’t about to let another week go bye while scheduling tests.  I even offered to leave him there for the afternoon.

Benny and I returned to the waiting room — after a BIG confrontation between the two of us.  Benny wanted to follow his daddy.  He whined the entire time we were waiting.  I had, mistakenly, thought that Benny would be an old hand back in a place we had been many times.  Sigh!  I guess that’s one of the consequences of not working him in between doctor visits.  I’ve been slacking off on the job.

Lew’s nurse gave me a CD with Lew’s scan on it (Hopefully, I’ll get a copy of his CAT scan in a couple of days.).  Seems that everyone there knows that I keep copies on my handheld.  The doctors freak out about it.  Dr. R-7 even said that he wished he could do what I do!  So, I’m looking at today’s CD . . . The CD the technician gave me on Sunday didn’t include the radiology report.  Today’s CD did.  Today’s report was much longer than the original three sentences from a year ago.  Don’t worry, I’m not including it.  At least, not all of it.

Right hip pain is probably secondary to extensive metastatic burden . . .

Gee . . . who would have thought that that big black mass in Lew’s right hip might be causing him pain?  “Probably”?

Below is the scan taken in April last year along with the new one.  The big blob at Lew’s left elbow is the injection site.  The oval near the middle of his pelvis is his bladder.  If you look real closely you can see his left kidney and ureter.  Okay, I’ll stop.

While at first glance this may look horrible, we find it very encouraging.  Comparing last year’s scan with Sunday’s scan, the rate of progression ain’t all that bad!  We have to be doing something right.

If you are recieving the plain text emailed version of this blog — You may want to click on the link below to view the picture on the web page.

Lew says I’m acting like a kid with a new set of Tinker-Toys.  Benny says I look and sound funny.  Yeah, I’m having fun taking my new chair apart and rebuilding it.  Today was footrest day.  I got Lew involved in threading two bolts through six holes that had to be perfectly in line.

I’m beginning to think I may need professional help getting the seat back and headrest set right.  My biggest problem is that this chair makes me sit up straight.  Boy, does that hurt!

Okay, reality time.

Lew’s in a lot more pain.  Its his right hip that’s the problem this time.  I got him an appointment for radiation tomorrow.  Hopefully, it will have the same results for relieving the pain that the last round had on his left hip and back.

What I thought would be a fifteen minute task, twenty at most, turned into an all day project.  “Mom” the previous owner of my new chair, had said that they had to remove the swing-away bracket for the joystick because it made the chair too wide to fit through the door on her full sized van.  Huh?  That’s pretty wide.

Since I can’t cope with the world without being able to slide right up to a table, I had to reinstall the swing-away bracket.  And, since there were only four parts in the zip-lock bag, how difficult could it be?  I flipped through the six manuals and discovered that this bracket had its own manual.  Uh oh!

And, upon closer inspection of the bag, one of the four shoulder screws had been destroyed — the head rounded by pliers and the tip sheared off.  Not a good sign.  Time to take a good look at the threads inside the bracket.  Yep, one of the holes had been stripped of its threads.  Whoever had taken the bracket apart, obviously didn’t see the locking screws holding the shoulder screws in place.

Bless Lew’s skills!  He dug through his tools and found the right size tap to clean up the threads inside the three remaining holes.  My big task, how to put this thing together without using the destroyed hole.

Several tries later, I had the bracket together and attached to the support arm.  And then I realized, I had put it together for left hand use instead of right hand use.  Sigh.  A few tries later, attached to the support arm, it moved in the right direction.  Now, to attach the joystick.

Flipping through the pages of the manual, I decided that a piece was missing.  How could I make the necessary part?  Humm . . . could I steal it from my current chair?  Nope, didn’t work the same way.  So, I puzzled over that for a while, until . . .

What was I thinking?!  It’s not the same as my old chair!  The joystick doesn’t attach the same way!  Three tries later — everything was attached to my new chair.  And two adjustments later, it was set up in just the right place and at the right height.

I got out our big level, held it above the arm of the chair and let it dangle down toward the wheels.  When the bubble indicated it was vertical, the swing-away bracket only widened the chair by a half an inch.  The dealer had to have installed the bracket wrong to have made it too wide to go through a van door.

I sat back and relaxed — very proud of myself.  Adjusting the back and the headrest would be my next project.

Get out of my way, you plebeian pedestrians!

Man, have I got to be the luckiest person on the planet!  This is the chair I would have bought for myself (if insurance had been paying for it).  The only thing this chair is missing is tie-down points (and I’ve lived without those for forever).  I went on the manufacturer’s web site and tried to look up the price of this thing with all the options it has.  I said “tried” because I’m not sure if I have option 384.23A or 7699.i or whatever.  Near as I can tell, list price would have been between $12,000 and $15,000!

“Mom” and I spent some time talking about likes and dislikes about chairs.  “Son” had told me that Mom didn’t like the chair because it didn’t do what she wanted.  She told me the same thing, at first.  Then I got the rest of the story.  Sitting in their driveway, watching their beagle (I almost brought Daisy home) and cats (who wandered in and out of my van) and goats and chickens, it was pretty obvious to me what Mom wanted to with that chair.  Unfortunately, their dealer had no idea what he was selling.  She’s an outdoors woman who takes care of all these animals, drives her chair up to Walmart and the local college.  She wasn’t looking to buy a pair of high heels.

The dealer came out a couple of times to reprogram the chair, before she gave up on it and said, “Take it back!”  The dealer wouldn’t take it back.  So, its been sitting, gathering dust.

I’ve known for a long time that Lew has wanted me to have a new chair.  But since insurance won’t pay (even though it was demanding all our money) . . .  Plus, my van is aging out . . .  I hadn’t realized how heavy it was weighing on him.  He’s as excited about it as I am.

Anyway, I’m exhausted.  I’ve got six (yes, 6) manuals to read.  I’ve got lots of adjustments to make (I sit a lot taller than Mom does).  And, I’ve got to figure out how I’m going to add all my attachments!

Oh!  Chill, Paula.  Son is a HAM too.

Get your motor running
Head out on the highway
Looking for adventure
In whatever comes our way.

Did you know that if you’re looking for road songs, you can find the lyrics on the web site for the United States Department of Transportation, Federal Highway Administration?  http://www.fhwa.dot.gov/infrastructure/roadsong.htm

Well, I needed a theme song for this post.  Tomorrow, I’m headed out on the highway, looking for adventure.  Hopefully, tomorrow night’s theme song won’t be the theme from Deliverance.

Oh, wait!  I need the jingle from the eBay commercials — I won it on eBay!

See, my chair is twelve years old.  The normal life expectancy is five years.  For the last couple of years, I’ve had automatic searches going on eBay looking for replacement parts for my chair.  I’ve bought wheels, tires, a joystick, and most recently, motors and gearboxes.  The impossible part of setting up the searches was to not find whole wheelchairs.  So, every day that someone listed a wheelchair the same brand as mine, I got an email notice about it.

Last week, I got one of those emails when I had lots of better things to do with my time.  So, of course, I went and looked at the ad.  Oh, nice chair!  And only fifty miles away.  It had a “Buy It Now” price of $2,000 and a starting bid price of $100.  Oh!  Nice chair.  Purchased in May.  Never used.  Oh!  Very nice chair.  I emailed the seller and asked what size it is.  Even better, nice chair.  My size.

I decided to take a chance.  I had seen lots of good chairs go unsold.  I put in the minimum bid of $100.  And for five days, I watched, waiting for the end of the auction.  And, I started feeling guilty — one hundred dollars for a not used three month old chair.  A very nice chair.

I set my alarm clock for early Monday morning so I wouldn’t miss the end of the auction.  Good thing.  Someone started bidding against me in the final hour.  We went back and forth for 45 minutes.  He quit bidding at $1200.

I’m still kinda in shock.  If the chair is as advertised, I got a REALLY good bargain.  The seller called and gave me directions.  I’m going to pick it up tomorrow.  (Not to worry, Lew knows where I’m going and we’ll be talking on the phone at regular intervals.  And, I’ll have my radio if needed.)

I’m soooo excited!  Can’t wait to do wheelies on the living room carpet!