Amsterdam Postcards

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Amsterdam Centraal train station seen from hotel room

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Richie in the kitchen

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Herrad out of bed!

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Beautiful couple and Steve

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Mmmm... Fritessaus

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Wisconsin and Illinois Postcards

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Rain and construction made for extended hours on the road

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Breakfast with KimmieG and Mike

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In front of their Christmas Tree home

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Shut your ...

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BBQ and commentary

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Riding the grief roller coaster

It started out with tears of joy. BR and I finally found a way to take away his pain that worked.

The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.

Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.

And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.

The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.

Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.

In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.

From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.

Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.

Bonus round: New Orleans Postcards

Last minute change of plans

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Landing at Louis Armstrong International Airport

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Orpheus Parade

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She won first prize

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Running into old friends

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Bead toss

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Lunch with Karen

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The party's over

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Illinois Postcards

Landing at Chicago's Midway Airport

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Visiting with Cindy. We've been friends since high school.

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Meeting my niece, Hope

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California Postcards

Oakland International Airport baggage claim

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San Mateo Bridge, late afternoon

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Lunch with co-workers, through cooking demonstration mirror

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Fog rolling in off the San Francisco bay

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Former neighbor Sabine and daughter Anouk

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Now face west. Now face north.

I arrived at the Oakland airport Sunday evening. Immediately upon touchdown, I texted BR requesting Superbowl updates. He did a great job keeping me informed until I could get in my rental car and find the game on the radio.

Football on the radio is a challenge for someone who isn't a die-hard team fan. I don't know the names of all the Saints players, so often an exciting play would happen, and I wouldn't know for several minutes whether to cheer or cry. But there was no mistaking that finish. WOO HOO!

It's Thursday now. Only two more work days, then a flight to Chicago on Saturday to spend Valentine's Day with my family. Mom's already started having overnight trips out of the nursing home, and expects to be home full time by the end of the month. I repeat, WOO HOO!

This trip, I expect to help my father around the house making preparations for the homecoming. He's not had internet service since moving, so we'll make a plan to get that up and running. My sisters have already taken care of daily living adjustments with the overnight visit. I expect the biggest preparations remaining will be mental. Mom hasn't lived at home since July 2008 -- nearly two years. Habits change. Depression forms like a fog that occasionally burns off, only to return at night. Coping becomes a solitary activity.

Monday will find me back in Austin. I've caught wind of some good "Cat's Away" stories, and hope that BR will feel up to sharing them.

Birthday Week Postcards

Moet and Mentholatum

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Oh! Is there a tequila menu?

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Settling in for the flight to Miami.

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Over the Gulf of Mexico

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Ocean view at sunset

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You can't get there from here

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Late night dining

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Time for bed

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Christmas Postcards

We've got our love to keep us warm.
Steak and baked potatoes for Christmas dinner.
No, BR. You can't keep her.
Adelaide in her snuggie, and I in my cap.
Old Saint Nick was very good to us this year.

Come fly with me, let's fly, let's fly away

The Texas beaches won't be warming up again until March, and I didn't think it was wise to wait to get BR to some sun and surf. So after a bit of discussion, I cashed in our airline and hotel reward points and booked a three night stay at a Fort Lauderdale Beach resort. We leave right after BR's birthday.

Hospice can wait until after the new year.

Discharged, but not discouraged

I woke up this morning feeling a bit down. With each new procedure to control BR's pain, my expectations get set at ever decreasing levels. Yet still, I have expectations. When pain relief didn't find BR yesterday, disappointment found me and decided to stay the night.

But after a nice hot shower, I decided to take stock of some of the good things that we've discovered.

• BR tolerated the three hour drive to Houston quite well, and is willing to consider some leisure travel.
• He is able to rest comfortably on a regular bed with just the alternating pressure pad, a foam wedge, and lots of pillows. This opens us back up to air travel. We'll just need to rent a shower chair, and of course a ramp van for cities without ramp taxis.
• Caregiving duties seem a bit less burdensome in new environments. At home, anything that upsets the routine is viewed negatively. On the road, there is no routine. My problem solving instincts get a workout as we adapt to each situation.

So when I went to pick up BR from the hospital, I did so with an intentional optimism. There are still four more days left in the trial, and pain relief may still find BR.

We see the doctor next on Wednesday for another adjustment.

Postcards

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.

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.

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.

While the cat's away, Summer 09

	Melting in the Texas heat
	With Nephew Jay before "The Toilet Affair."
	Niece Jordan. Beautiful and talented.
	Gina picks up the last shift.
	BR models his present from Toronto.