Thursday, October 22, 2009

Dude, where's my car?

Whoa. What the hell just happened?

One minute we are driving back from Houston, discussing how wonderful the doctor at M.D. Anderson was. He spent at least 45 minutes with us, and explaining how Prialt works, listening to our concerns, and being honest about the chances of success. He let us know that between 60 and 70 percent of people who try Prialt find the "sweet spot" where pain is relieved, and the nasty side effects don't take hold. He tells us to expect to spend a week in Houston while the proper dosage is tuned in through experimentation.

The remaining 30 to 40 percent are unable to achieve pain relief without the drug affecting their memory and ability to reason. He assured us that in this unlikely event, the side effects will go away completely within three hours of stopping the medication.

Given BR's history of failure with exotic pain treatments, we took time to discuss our options should Prialt follow suit. Unlike the Which Doctor, this doctor was not afraid to discuss how intractable pain crosses into palliative care, and finally into hospice. He felt that BR would best be served by a local palliative care doctor instead of a pain management doctor, and they will be providing a referral.

Ding! Dong! The Which is dead.

After a couple celebratory drinks at a Houston watering hole, we started making our way back to Austin. About 45 miles from home, I felt a strong vibration from the van. Thinking it was just rough pavement, I changed lanes, but the vibration persisted. Then the "check engine" light started flashing and we started losing power. Crap.

Now when BR and I travel, we are a lot like the Beverly Hillbillies. The van is packed with an entire hospital bed complete with mattress and rails, a shower chair, BR in his iBOT, a cooler, and a couple large suitcases. The van breaking down just completes the picture.

We rolled into a small convenience store on the edge of nowhere, where the clerk was quick to join me under the hood looking for the source of the problem. Nothing obvious was out of place, but I knew we weren't going to make it the final 45 miles. The clerk offered to call a friend, who just happened to have a garage right across the street. The mechanic friend was working late and agreed to take a look.

The diagnostic computer said that "the MAP readings were not changing from start to run" and that "cylinder 4 was misfiring". The friend changed the spark plug on cylinder 4, but it didn't help. We were stuck.

I thought through our options. How was I going to get BR and all our stuff home? Wheelchair minivan taxis are difficult to come by in downtown Austin, much less the edge of nowhere. It became obvious that the iBOT would not be leaving with us.

Once that decision was made, I called the neighbors from across the street, and they agreed to come fetch us in their SUV. During the 45 minutes it took for them to arrive, I realized that BR's hospital bed would also be spending the night at the edge of nowhere. The only piece of equipment that joined us was the shower chair.

So as BR sits in his shower chair in the living room, completely unable to do anything for himself, I'm working on the plan to retrieve the bed and iBOT in the morning. The mechanic friend will be digging further into the engine problems, but BR's independence and comfort can't wait for a repair. In the mean time, we will be sharing a bed tonight for the first time since we moved to Austin.


Cranky said...

Steve - I'm glad you're a resourceful person, because this type of issue could fell a lesser caregiver.

When we went to Maine for vacation last summer I found myself being extremely stressed out in the drive north, worrying about what we'd do should we experience car troubles en route. We too, ride fully loaded and had 2 dogs to boot.

I'm rooting for you being able to bring the iBot and hospital bed back in the quickly repaired car!

Oh, and it sounds like the meeting with doc was excellent. So happy for you and BR.

kmilyun said...

Such good news that the Dr visit positive.

What a hassle with the van -

I could make trashy innuendo about sharing the bed but . ... ;)- I do know how uncomfortable that can be especially when tired.

Hope the van repairs are not too bad. Absolutely super to hear that the Dr listened and a plan has been formed.

Kim said...

Sorry if this posts twice; my computer crashed just as I was hitting the "publish your comment" button...

Reading your post, my brain immediately went to that gem of an '80s movie, Real Genius. One character has just passed an exam but failed the class. The character's roommate tells him "Well, then, I'm happy and I'm sad for you." Those exact words popped into my head here.

Happy dance for making the trip to meet with a human being doctor. Frowny face for the van troubles, though I expect sleeping in the same bed has to be a treat after so long with the hospital bed.

steve said...

Cranky - In the end, the mechanic was sheer luck. No credit to be taken there. I really need to renew my AAA membership just to make sure we don't get stranded when our luck runs out.

I rented a 26' U-Haul van, which was the smallest with a ramp wide enough for the iBOT, and retrieve both it and the bed. But Jan and Kim, you'll both be happy to hear that we enjoyed sleeping together so much that we are going to try again tonight just to see if it was a fluke. :-)

Oh and Kim, "I'm thinking of the immortal words of Socrates, when he said, 'I drank what?'"

Herrad said...

Hi Steve,
Glad you were able to get the Ibot and the bed home so quickly.
The meeting with the doctor sounded good hope the treatment will work too.
Thinking of you both.

steve said...

Howdy, Herrad - BR has his wheels. I have mine, and soon you will have yours. Yippee!