Monday, October 26, 2009

Blessings when things go wrong

The van was our last working form of transportation. My motorcycle had a dead battery, and my bicycle had two flat tires. I had been meaning to get both working for quite a while, but just never did it. The loss of the van meant the complete loss of wheels -- something that was unacceptable.

We spent Wednesday night together in my bed, which is a queen sized Murphy Bed. I placed BR's alternating pressure pad on one half of the bed under the mattress pad, and layered the fitted sheet, waterproof pad, and draw sheet on top. Then I arranged his pillows (he has six) such that he would lie on a slight incline with his feet elevated. After placing him in bed, I moved his trapeze over him, which provided a side rail as well, and moved the hospital table behind the trapeze stand for his water and other nighttime needs.

And then we snuggled for the first time in over a year. Mmmmm.

The next day, I rented a 26' U-Haul to go pick up BR's wheelchair and bed. It was much larger that I needed, but it was the only van available that had a ramp wide enough to accommodate the iBOT. After a successful retrieval, I started thinking about how to get the motorcycle working again before 9am the next morning, when the van was due back. I would need to throw the bicycle into the van for the ride home, get a tire pump for a presto valve to inflate the bicycle tires, and get a motorcycle battery. The pump was easy -- Target opens at 8am. The battery was a bit more difficult. There was a power equipment place that opened at 8am as well, and it carried batteries. Starting at 7:45am, I picked up the pump, then headed for the battery. When I pulled into the parking lot, there were no spaces that would accommodate a 26' van, so I decided to pull across several spaces just past the store's street sign. What I didn't realize was that the sign was only 10 feet off the ground, and the U-Haul had a 12 foot clearance. Guess who's buying a new sign for the store?

With the battery in hand, I refueled the van, being hyper aware of the overhead clearance at the pump. I returned the van, pumped up the bicycle tires, and headed back home with the battery. Two down, one to go.

The mechanic friend turned out to be honest, trustworthy, and talented. Not only did he fix the van's engine (broken valve spring), he also changed the oil, fixed the driver's side window, the passenger door, and the electrical problem that was draining the battery if the van wasn't used for two or more days. When I called for updates, he always answered the phone, and would tell me about the leg work he was doing. And he did all this for a price far less than any dealer would have charged.

Cathy and Todd came down from Dallas for a visit this weekend, so Todd was able to take me out to pick up the van on Sunday. She purrs like a kitten.

Some may see this whole experience as an expensive twist of fate. I view the two nights BR and I shared a bed as worth the price.

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.

Tuesday, October 20, 2009

What do cancer and MS have in common?

Chronic pain.

We're heading to Houston for that appointment at the M.D. Anderson Cancer Center. The whole prospect of another doctor offering other worldly treatments with unknown chances of working has just got me down. Shots in the dark are expensive, unproductive, and take their toll on our emotions.

Our experience with the Which Doctor has been frustrating and depressing. He has maintained BR on increasingly potent opioids, without which BR's pain would be unbearable. All the while, he sequentially offers invasive treatments which seem to line his pocket without providing BR any relief.

It's time for some new blood on this symptom, which is why we've agreed to travel the 165 miles to Houston for a consultation. The drive alone will be torture for BR. Our hope is the doctor there will have a bit more compassion for a patient like BR. Maybe he will understand the toll chronic pain takes on every aspect of the patient's life. Maybe he will realize that experimentation, though necessary, comes at a cost to the patient, both financially and emotionally. And maybe, just maybe, he'll be a human, and not just a doctor.

If he has nothing to offer as treatment, that will be fine. If he has anything to offer about how to know when it's time for hospice, that will be better. When is the pain too much? In a particularly bad moment last week, BR wondered if Jesus had already come for him, and he didn't go.

Tuesday, October 13, 2009

Summer 2009 at Mueller, Austin

I took a little time this weekend to put together a little clip video of some of the things we did this past summer. It wasn't all urine and pain. :-)

Saturday, October 10, 2009

17 years and counting

We had been dating for two years, and living together for one. We got engaged in the parking lot of the San Jose, California airport. While riding out Hurricane Andrew on Key West, we decided to set the date -- 10/10/1992. While looking through a AAA magazine, we read an article about Skyline Drive through the Shenandoah National Park. It mentioned a small waterfall right off the road, and we chose it as the location for our wedding.

We set out from Dallas, Texas on the 8th, driving to Memphis, Tennessee on the first day. On the second day, we made it to Roanoke, Virginia. We set off on the morning of the 10th, located the falls, and started to climb. When we reached the top, we exchanged vows and rings between ourselves and our God.

Goodness, we were young!

Sunday, October 4, 2009

Coude it be magic?

Our regular home nurse was out sick on Friday, so a replacement nurse came by yesterday to switch BR over to the coude catheter. I gave him the history of BR's issues with catheters, and described how the coude catheter should be inserted, just as it was described to me by the Mad Urologist. After a short prayer, BR removed the old catheter, William inserted the coude catheter while I held it in the correct orientation, and the balloon was inflated.

"BR, how does it feel?"

"That was easier than I was expecting. Best change in a long time."

About 20 minutes later, the flow started. Nothing but catheter!

24 hours later and we are about to ditch the Depend undergarments.

Baby, I love you, come, come, come into my bag
Let me know the wonder of all of you
Baby, I want you now, now, now, and flow on fast
Coude this be the magic at last?

Thursday, October 1, 2009

Toxic Snail Venom, anyone?

Oh this just keeps getting better and better. We had our monthly visit with BR's pain management team today. The doctor sat in on this one, as there has been some turnover in his office staff. I thought this was going to be the standard "take the vitals and collect the scripts" visit. Instead, BR and the doctor exchanged words during which the doctor suggested BR might be better off under someone else's care. Wow. We haven't seen this guy in the flesh since April, and he completely loses it in response to BR's frustration with him not being more engaged with the case.

How was BR to know that the Which Doctor, as I will call him from now on, had finally done some research and actually had a recommendation?

He is ready to refer us to the Pain Management Center at the MD Anderson Cancer Center in Houston. In particular, he thinks that given BR's opioid tolerance, he might respond better to Prialt delivered via a pump intrathecally. Prialt is a synthetic drug modeled after the toxic venom of the cone snail.

BR's pain levels are steadily getting worse, and we are no longer finding that "sweet spot" between pain and mental fog. Toxic snail venom is starting to look pretty good.

Passion vs. Love

We started a new game tonight. Whenever we hear "Samoa", we have to kiss passionately.

After a while, we extended the game to "pain", where I agreed to give BR a peck.

"Why isn't 'pain' worth the same passion as 'Samoa'?"

"What? Are you trying to wear my lips out?"