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.

Christmas Eve Postcards

	BR in the Sanctuary
	John, Dede/Mama, Bobrobert
	BR in borrowed bling

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.

Bob French & Friends: Live from the WWOZ Studio

This is surely going to be a good show!

From the WWOZ website:

Bob French & Friends will play live in WWOZ's performance studio with Dr. John, Dave Bartholomew, David Torkanowsky and special guests on Tuesday, December 22 from 9-11 a.m. [U.S. Central Time (GMT-6)] during Mr. French's Traditional Classic Jazz Show. We'll be bringing you this all-star group live on air at 90.7 FM in New Orleans and online at wwoz.org.

Wholesome Helper

It's like Hamburger Helper, only wholesome.

I don't know why he's reading the box. He never follows the directions. Yet deliciousness is guaranteed to ensue.

The crown didn't fit

I took BR to the dentist today to have a temporary crown replaced with a permanent one. BR always takes a "happy pill" (1mg Ativan) before dental work. Today he took three. In addition to the intended effect, it also left him unfit to drive his iBOT and hallucinating.

Now the dentist has a monitor next to the chair that, when not being used for official business, shows relaxing nature videos. One of the videos is of mountaineers climbing Mount Everest. BR became confused and thought it was live video of the inside of his mouth. He insisted that care be taken not to harm the men crawling around in there.

After putting the new crown in place, the dentist took an x-ray to verify the fit. It showed a gap between the teeth that he felt was too large. He took out the crown and started poking around with one of his dental hooks. BR got wide-eyed, and demanded that the dentist stop hurting him with that unsanitary tool. I swear he was possessed with the spirit of Ignatius J. Reilly. No amount of reassurance from the dentist in his sanitation practices would convince BR to readmit the hook.

Long story short, the dentist took another mold of the tooth, and temporarily installed the malfitting crown. We'll find out tomorrow when the replacement crown will be ready.

Is it time for hospice?

BR's neurologist seems to think so. He's going to arrange for an assessment.

Since we returned from Houston, BR has been sleeping long hours. He wakes in the late evening for what would normally be our morning routine. Medication that is normally spread out over 16 hours is condensed into 8. I've been getting to bed around 4am, and am exhausted.

Seems we just get started and before you know it

... comes the time we have to pull the tube.

The trial failed. There was no relief. No side effects. No effect whatsoever. We'll ask the doctor about the chances of a mechanical failure of some sort, but it just doesn't look good.

No matter the outcome, I believe in celebrating beginnings and ends. So last night we had a delicious dinner at Pappadeaux. BR had fried catfish, shrimp, and onion rings, and I had a filet and rock lobster. We sat up at the bar, which is where we are most comfortable, and drank a toast to hope.

Push it up! Push it up! WAAAAY UP!

The pain doctor saw BR this afternoon. He didn't seem worried that BR has not yet responded to the Prialt, telling us that they start with a "center of the bell curve" dose. This means that at this does, about 50% of the people get relief. He then increased the dose from 2 micrograms/day to 9 micrograms/day, saying that BR should definitely notice a difference in pain level by dinner time, but will also likely to have some mild side effects.

He also commented on BR's sacral insufficiency fracture, and repeated the Which doctor's recommendation of sacralplasty. When I said it wasn't considered medically necessary by the insurance company, he was surprised, and offered to make a case on our behalf. Sweet!

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.

BR and Prialt - Day 1

Six hours after the catheter insertion, BR wasn't getting relief. The doctor wants to give it a full 24 hours before adjusting the dosage, but I feel pretty sure it's a bit too low.



Discharge is still scheduled for Tuesday AM.

And it's in

The doctor came out to let me know that the intrathecal catheter insertion went fine and BR is in the recovery area. He gave me some advice on how to handle any pump alarms, and confirmed my expectations for the rest of the week. We should know in the next couple hours if this first dosage level has any effect.

Waiting for the doctor

Waiting to be called back

Prialt trial starts Monday

It looks like all the planets have aligned, and BR's Prialt trial is a go for Monday morning. My understanding is that it will go something like this.

Monday:

• Check into MD Anderson
• Anesthesiology assessment
• Surgical procedure to insert catheter into BR's spine
• Initial Prialt dosage delivery started using external pump
• BR spends the night and is monitored for effectiveness and side effects.

Tuesday:

• Dosage adjustment
• Discharge from hospital

Wednesday:

• Dosage adjustment

Friday:

• Dosage finalized
• Catheter removed and trial ends

So by this time next week, we should know if Prialt will improve BR's quality of life.

---

In other news, we participated in the Lights of Love 5k Friday evening. With temperatures hovering around 31F/0C, BR became chilled to the bone quite quickly, and ended up having to drop out as we passed our street about half-way through the course. Once I got him inside and warming up, I rejoined the course and finished in just under an hour.

I then came home and celebrated with Dede and Beth's chicken and dumplings. I'm going to call it a caloric net-zero.

Mama, Aunt, Fosamax, Prialt

BR's mama and aunt have once again made the trek from Louisiana to visit, comfort, and generally raise our spirits. We couldn't be more pleased to have them here. We'll be eating turkey gumbo (yum!) for lunch, and then BR and I will take them out for a steak dinner.

The results came back from BR's bone density test. He has osteoporosis. The GP recommends starting Fosamax, but I have some reservations. Certainly strong bones are a cornerstone of his quality of life, as is evidenced from the recent fracture. But from what I've read about Fosamax, it is yet another drug that may or may not help. I've developed a strong distaste for drugs that instead of curing a condition, only lessen the symptoms. Nobody seems to be asking why BR is losing bone mass -- just take a pill for the rest of your life, and maybe you won't get another fracture.

We are going to pass on Fosamax for now. With the Prialt trial next week, it isn't a good idea to add another medication to the mix. That said, I really don't like the thought of BR's bones breaking down. I need to read up on how to care for someone with osteoporosis who is also wheelchair bound.

The McDonald's exercise program

I'm getting fat. Clothes that used to hang on me are now tighter than a sausage casing. I've always lived with a rough understanding that change in waist size is proportional to daily caloric intake minus calories burned by resting rate of metabolism minus calories burned through exercise. As I age, my rate of metabolism is slowing. So if I want to continue to fit in my clothes, I need to watch what I eat (diet), put on muscle mass to maintain my metabolism (weight training), and/or get my fat ass off the couch for a few hours each day (cardiovascular exercise).

I've never been a big fan of dieting. I like food, and food likes me. But lately I've noticed that I've been eating as an avoidance behavior. If there is something I don't want to do, I'll use meal/snack preparation and consumption as a way to put it off. Working from home amplifies this tendency.

In my twenties, I would regularly lift weights at the gym at work as a way of breaking up the day. When we moved to San Francisco, I joined a gym in the city, but only used it once a year on average. Now, my only weight bearing exercise is lifting BR when transferring him between his bed and chair.

I've never been an enthusiastic player of team sports, preferring cycling instead for heart pumping, fresh air gulping exploration of roads less traveled. I used to ride in multi-day charity events, and loved many aspects of the way I felt after a day in the saddle. These days, my worsening allergies have taken the excuse lead for why the bicycle sits in the garage collecting dust.

It's a perfect storm. A slippery slope of bad behaviors reinforced by a litany of excuses. Well I'm putting the excuses away for the holidays, and am putting some personal focus on my ample yet adorable waistline. If there is one thing I hate more than diet and exercise, it is clothes shopping.

One of my initial motivators will be the Lights of Love 5k charity run taking place in our neighborhood this coming Friday. I have no intention of running the distance, and instead will speed walk alongside BR as he opens up the throttle on his wheelchair. The event benefits the local Ronald McDonald House, which provides housing next to the children's hospital for families of the critically ill who are far from home. I just love the irony of kicking off my body shaping efforts at a McDonald's sponsored event.

If you would like to sponsor BR and me, the Public Service Announcement above has a link to the donation page. You'll be supporting a great organization.

Mama said to make it really wet

BR makes cornbread dressing using the family recipe.

Thanksgiving wishes

I was reading Patrick's post on how Thanksgiving has marked so many changes in his family, and it really struck a chord. It was two years ago just before Thanksgiving that I wheeled BR into San Francisco's Davies ER with a neurogenic bladder. That stay, and the subsequent bout with sepsis lasted almost a month.

Then last year, BR had an abscess in his mouth caused by tori. His bite hasn't been the same since they were removed, making mealtimes an extended event.

This year, a sacral insufficiency fracture heralded the holidays. Talk about ouch on ouch.

Yet still, we are in the kitchen making our favorite Thanksgiving foods. BR is on the phone getting the recipe for cornbread stuffing from his Mama. (You didn't really think those White Castles would last until Thanksgiving, did you?) I've made the broccoli cheese casserole. The turkey is thawed and ready for the morning roast. Add green beans stir-fried in bacon fat, roasted pecans, and brown-and-serve rolls, and we have everything to make Thanksgiving special. Except family.

No matter where you are. No matter what you are doing. No matter how you feel about yourself. You are loved and missed.

Thanksgiving Guilty Pleasure: White Castle Stuffing

OK. I've never tried it. But I do love White Castle hamburgers. My sister Karen and her husband Pete sent 16 burgers on dry ice from Illinois last week for our enjoyment (there aren't any White Castle's in Austin). Mmmmm.

So here's the recipe, which is copied from White Castle Shares Turkey Stuffing Recipe:

10 White Castle hamburgers, pickle removed
1-1/2 cups diced celery
1-1/4 teaspoon each ground thyme and ground sage
1-1/2 teaspoon coarse ground black pepper
1/4 cup chicken broth

Tear burgers into small pieces and place in a large mixing
bowl. Add celery and seasonings. Toss and add chicken broth.
Toss well. Stuff cavity of turkey just before roasting. Makes
about 9 cups, enough for a 10 - 12 lb. turkey. Note: Allow
one White Castle hamburger for each pound of turkey, which will
be the equivalent of 3/4 cup of stuffing per pound.

Interminable November

Tick. Tock. T i  c  k.    T     o      c      k.

Thanksgiving is almost here, yet I feel as if November started about three years ago. The trip to Houston, the car trouble, Halloween, even the trip to California -- they are all fading memories.

I have the week off. The company shut down as a cost saving measure. There's so much I want to do, but have yet to find the motivation. It's surprising how much my personal energy levels are tied to BR's. An old habit, I guess, and one whose time has passed.

So today I'm closing the web browser and attacking The List. Wish me luck.

BR reenacts a scene from Sixteen Candles

The doctor has put BR on high dosage vitamin D for two months after blood work showed he was about a quart low. He also had a bone density test this morning.

Bed rest seems to have helped the fracture pain some, but he still seems to be fighting an infection, as his skin is on fire.

Postcards

Sacral Bleu!

I was in a work call when I got the text message.

Dr. called. Will call back in 10. Please come down.

BR wasn't sure which doctor had called. When the phone rang, it was the Which doctor. The MRI showed a sacral insufficiency fracture (SIF), which would explain the new hip pain. These fractures usually occur in older women with osteoporosis. <Insert "BR gets all the lady problems" joke here.>

The doctor offered a couple options: bed rest or sacroplasty. The latter is a new procedure, and he is only one of two doctors that perform it here in town. He did warn us that the insurance company will likely consider the procedure experimental, and hinted at finance options should we decide to proceed without insurance approval.

From our insurance company:

Percutaneous sacroplasty is considered investigational and not medically necessary for all indications.

[...]

Standard treatment for SIF includes bed rest, limited weight-bearing activities, oral analgesics, and sacral corsets. Improvement of symptoms may take as long as 12 months.

The Which doctor says that even after the fracture heals, the pain may persist, requiring sacroplasty anyway. Other sources say that 90% of patients get better with bed rest and limited weight-bearing activities.

For now, I think we'll go the bed rest route, and look into treating BR's osteopenia, which was diagnosed a few years back, even before the MS. If the pain doesn't improve over the next few weeks, sacroplasty can still be performed.

To be or not to be a vampire

BR just finished watching An Interview with the Vampire. Now he's out back smoking a cigarette and waiting for Lestat. Is Vampirism his last and best hope for a cure?

I'm coming out of my funk. BR's needs are more than usual, but not more than Jordan can handle for a week, and I need a break, so I'm going to California on Sunday. I'll just check-in every evening to see what the trends are, and let the neighbors know they may be called in for backup should something go wrong.

The hip MRI was uneventful. The technician said the results will be ready tomorrow.

And to prove that I'm feeling better, here's a little clip from the 2010 Desperate Divas competition.

Orange you glad you don't have implants

Saw the PCP yesterday. BR's still in a lot of pain, but was able to hold it together for the appointment. I don't know if it was the pain or the drugs, but I almost lost it when BR starting lightly hitting the doctor with his grabber. "You. Don't. Know. What's. Wrong."

He'll be getting an MRI of each hip joint this afternoon. "Don't you have an implant?" "No." "No spinal cord stimulator?" "Nope. It didn't work."

After I got BR to bed, I made groceries for the week. (If you follow that link, you'll never get those 10 minutes back. You have been warned.)

Come morning, I'll be calling our Blue Cross case manager to see if we have any coverage for skilled nursing until the trial. Not that we'll use it, but just gathering information.

Tough situation and tough decisions

With BR heavily sedated all the time, I'm falling into a terrible funk. I second guess all my decisions.

Is it time to call the doctor? I've decided yes on this one. I'm told I can call in the morning and get a same day appointment with his primary care physician.

Am I doing enough to avoid pressure wounds? I'm turning him every 3-4 hours during the day, and once overnight, and the process is excruciatingly painful for him. He has one sore on his tailbone that is holding steady at stage 1, down from stage 2 when he was having all the bladder issues.

He gets up for a few hours in the evening, but communication is slow. Often he'll just fall asleep in his chair.

Should I be checking him into a care facility until the Prialt trial in December? I hope the doctor has some advice for me tomorrow.

Should I be going to California next week? Jordan is coming back to care for him, but this isn't the same situation it was over the summer.

I'm trying to stay calm and seek advice from professionals as needed. But when I don't feel what he's feeling, when he has a disease that ends up being the root of so many problems that don't seem to be responding to treatment, it all just seems so futile. I fear we are on a crash course with the ER, and we both *hate* the ER.

Maybe the doctor tomorrow will be the "stitch in time" that I'm looking for.

Halloween

"Those damn Halloween pranksters."


"Wearing her heart on her cheek."


"You're not fooling anyone with that halo."


"Pardon me, Princess."


"Chicken meets Monkey. Film at 11."


"Don't encourage her."

Hurry up and wait

Happy All Saints Day, y'all.

BR and I were expecting to be on our way back to Houston at this time. We were e-mailing (!) with the doctor last week, and he said he was available for the Prialt trial either the week of November 2nd, or the week of December 7th. Not wanting to wait whole month, we pushed for next week, and everything was looking good until noon on Friday, when the business office called and said they hadn't received insurance approval yet.

I called and left a message for our case manager at Blue Cross, and she called back to let us know that BR needed to have a psych evaluation before the trial could be authorized. Luckily, he had already done one for the Which doctor -- we just needed to get the paperwork to the right people. I left a couple messages with the Which doctor's office, and when I hadn't received a response by 4pm, I drove 30 minutes and sat in the waiting room until I could get confirmation that they had faxed the report over to M.D. Anderson. But I knew that we were already too late. There just wasn't enough time for the report to be reviewed by Blue Cross before the M.D. Anderson business office closed for the weekend.

It really is a shame. BR's pain is worse than ever. He has agreed to let me keep him pretty doped up so he can tolerate it. He's sleeping a lot and needs supervision when he's awake.

The countdown has started until December 7th.

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.

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. :-)

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!

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?

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?"

Subject: Your backorder has been shipped

Want to fly from Austin to Chicago on a clear day? No problem.
Bad weather in Denver? Your flight to Chicago has been canceled.

It seems that as companies try to squeeze the very last drop of efficiency out of their operations, they also squeeze out all ability to deal with anything but the ordinary. We ordered BR's coude catheter on September 18. It was scheduled to ship on the 21st. Then the 22nd. Then it was marked "on backorder." That's not a good sign. A call on the 23rd revealed that the Fort Worth warehouse was out of stock, but the Jacksonville warehouse had some. It should ship within 24 hours and be delivered within 3 days.

Yet the web site never changed: "on backorder, scheduled to ship 9/22"

A call yesterday revealed the same information: Fort Worth doesn't have it, but Jacksonville does. It will ship within 24 hours.

Paint me skeptical.

This morning I got the e-mail I had been waiting for: Your backorder has been shipped

It should be here some time Thursday, so we'll move the home nurse visit from Wednesday to Friday, change the tube, and know by the end of the week if more drastic measures will be necessary to bring BR's bladder under control.

My Inspiration

My grandmother, Vera, had six children. In 1949, five of them were stricken with polio before they had reached their teenage years. My father was severely affected, losing the use of one arm and one leg. But by far the hardest hit was my Uncle Rudy. At age 8, he was nearly killed by the disease. He needed an iron lung, but none were available. Machinists in Bloomington, Illinois heard of his plight, got together, and came up with a "wooden lung."



That wooden lung saved my uncle's life, and he proceeded to live longer than anyone could have anticipated.

The one who took care of him day in and day out for nearly 60 years was my grandmother. She passed away last year before I had a chance to ask her how she did it.

Catheters Gone Wild!

About three weeks ago, BR's suprapubic catheter went on strike. No amount of fiddling with angles and pushing and pulling would make the liquid sunshine flow through the tube without also flowing through his urethra.

On the first visit to the Mad Urologist, BR's normal latex catheter was replaced with a silicone "large lumen" model, in the hopes that bigger would equal better flow. Unfortunately, the nurse botched the insertion. Being made of a stiffer material, the catheter found itself exiting the bladder via the urethra. Can you guess what came next? Go ahead, guess. That's right. Balloon inflation in the prostate! After he realized something had gone wrong, the nurse called the doctor, who corrected the tube placement, and gave BR a two day Levaquin prophylaxis to keep the bacteria in his bladder from spreading to his blood stream.

Long story short, BR bled from his urethra for a week, the catheter only briefly worked well, and it hurt like hell when it was removed two weeks later.

Next, the Mad Urologist ordered video urodynamic tests to better understand what's happening when BR leaks. These tests are only done in their Round Rock office, which is about a 30 minute drive from home. For such a horribly uncomfortable suite of experiments, I have to say that Tracy, the nurse technician, made the experience as enjoyable as possible.

The tests showed that BR's bladder contracts in the presence of a very small volume of liquid, and that when it contracts, it does so with more than twice the normal pressure. Combine this data with the theory that the end of the catheter is migrating down to the bladder neck where urine can't get to it without a contraction, and we seem to have an explanation for the symptoms.

The Mad Urologist offered four options:

1. Try a catheter with a "coude" tip which when properly inserted may be less likely to migrate down to the bladder neck.


2. Insert a foley catheter through the urethra in addition to the suprapubic catheter. Double your pleasure. Double your fun.


3. Inject Botox into the bladder muscles to reduce the strength of the contractions. Lighter contractions may permit more of the urine to exit through the catheter.


4. Surgically close the bladder neck, forcing all urine to exit through the suprapubic catheter. The Mad Urologist is reluctant to do this because it limits his future options should BR develop other urinary tract problems, like stones.

So we are going to start with the coude catheter, which has been ordered and should be here sometime next week. If that doesn't work, BR says sew the bastard up.

Physician burnout

As we prepare for our sixth visit to the urologist in two months, I realize that I am suffering from physician burnout. So many doctors taking their sweet time to address increasingly acute issues. So much time away from work. So much time away from fun. So much time sitting in waiting rooms and examination rooms. So little interpersonal skills. So little hope.

I'd pay good money to the first internet-based medical practice. Send trained, sympathetic technicians to my home with all the necessary equipment, including a high resolution camera. Interact with the doctor through a video chat, with the technician acting as the doctor's "remote hands". House calls for the 21st century. If doctors aren't going to act like human beings, why should it be necessary to see them in the flesh?

The Birth of Bladderman

Contemplating a life full of catheters and urological problems, BR makes a dramatic decision...





He wants the ultimate urinary tract.
One impervious to all foreign contaminants.
One that knows when to hold 'em. Knows when to fold 'em.
Knows when to take a pee, and never runs.





A technician loads BR into the Urodynamo, and makes the necessary preparations.





With the push of a button, the transformation begins.

To be continued ...

Odd MS symptoms

BR has a couple of symptoms that seem to be pretty out of the ordinary.

First, he has become extremely photo-sensitive. Bright, or over-head lights make his eyes flash. You may have noticed the "Gilligan" hat in his latest photos.

We went to an ophthalmologist last week, and despite our 2:30pm appointment, he was among the last patients to be seen. The "technician" didn't really understand how the equipment could be adapted so BR didn't have to get out of his chair, and the Doctor spent less than 5 minutes with us before ordering further tests that couldn't be completed that same day. Grrrr.

The photo-sensitivity has caused us to become civically active. We have a streetlamp directly in front of our porch which shines brightly after dark. Three months ago, I submitted a request to the property owner's association to have the light shielded so that BR can comfortably use the front porch after dark without wearing sunglasses and floppy hats. Last Wednesday, we had our meeting with the development's New Construction Council, and they were very accommodating. The light has since been temporarily disabled, and they are working on a permanent solution.



But the weirdest symptom we've been dealing with is a shift in either BR's jaw or teeth. For nearly a year, he has been chewing with just two molars. The rest of his teeth no longer meet. We also found out from his dentist that one of those two molars is likely dead. Not really sure what is an acceptable solution to this one.

I'd like to see the clinical trial data on this one

Photo and Gimp Editing: steve

BR seems a bit dubious of the latest advances in MS treatment.

Miss Blocked Catheter 2009

Here she is modeling the latest in catheter innovation.

Guilty Pleasure: PooTrap

As Seen on TV!

Nature's Pain Relief

Not enough to relieve the drought, but it sure was nice.

Guilty Pleasure: Tatie Danielle

I fell in love with this dark French comedy back in the early 90s. It's the story of an elderly woman who manages to kill her caregiver, and moves in with her nephew's family in Paris. The more people try to make her happy, the meaner she is to them.



Loose translation:

Nephew: I don't think you'll be capable of keeping Tatie in July. You will come with me to Greece.

Niece: But what about Tatie?

Nephew: I'll make arrangements for her. I think I made a mistake taking her in. I want to tell you something, but you have to keep it a secret.

Niece: Of course.

Nephew: I think she's mean.

Niece: (gasps) You're right. She is mean.

The only constant is change

We have had 65 days of temperatures over 100 degrees Fahrenheit (38 degrees Celsius), and today will make 66. I'd forgotten how ferociously cabin fever strikes during these slow, hot Texas summer months. Just like in winter, we move quickly from the house to the van, from the van to the office/store/restaurant. And we move just as quickly on the return side.

Jordan went back to Illinois just over a week ago, after spending eight weeks as BR's live-in caregiver. It wasn't always smooth, but we did finally find a groove, and enjoyed her company. Jordan spent most days up in her room, which couldn't have been easy given that the A/C was not able to keep up with the heat and temperatures would reach 80-85 degrees each day. Great for beach. Not so good for bed.

We had a neurologist appointment on Monday. We really had only one expectation going in. Both BR and I were sure that he had gained some weight since his last sit on the scale four months ago. To our dismay, he's lost seven pounds. In four months.

131 pounds divided by 1.75 pounds lost per month leaves 75 months until 0.

Tonight was meatloaf night, with salad and heavy honey mustard dressing, black-eyed peas, and homemade peach ice cream for dessert.

The neurologist put BR on a more sustained schedule of steroids. Instead of three grams of prednisone every three months, he's taking one gram every four weeks. The difference in his energy levels, appetite, and comprehension is amazing. Please, no whammies!

Life is THE Event

"I donate to the AIDS Walk."

"I bid at the HRC Black Tie Dinner silent auction."

"I buy cookie dough from my neighbor to support music education."

These are all admirable actions. But you are more than money. You have talents. GIVE!

Prisoner or family?

I'm dragging my feet on the whole Medicare decision. Am I lazy? Confused? Scared?

Sure. A bit of all of those.

What I haven't said is that given our lack of marital status, BR is probably eligible for Medicaid.

If I had BR's best interests at heart, I would make sure he was taken care of in the event that anything should happen to me. That's a will and Medicaid, right?

I can't hear you!

Lately, I've been giving Cranky a run for her money. Now that the bladder issues are under control, BR's pain level has reprised its role as primary complaint. He's upped his breakthrough medications, and we are now fighting the associated mental fog, both figuratively and verbally.

Our first line of defense, Adderall, seems to be losing its effectiveness. BR is able to stay awake more, but I'm having a hard time adapting to the slow, quiet, imprecise, and constant communication that has become the norm. It got so bad last night that I had a bit of a panic attack.

I'm working on my relaxation techniques, and praying for the patience needed to make BR feel understood.

Eureka! Area Man Discovers Potential Breakthrough in Suprapubic Catheter Management

AUSTIN, TX -- Steve, after struggling for months to find a solution to Bobrobert's clogged catheters, has discovered a simple technique which he believes will keep the Yellow River from breaching its levees.

"You see, about 10 days after a tube change, the new one just seems to stop working. But I noticed that when BR's legs are stretched, the flow starts back up again for a short period."

It was during one such stretching session that the idea finally hit him.

"What if I tape the tube to alternating legs each day? That should change up the angle that the catheter rests against the bladder wall."

Steve hopes that in regularly changing the catheter angle, bacteria will have less of a chance to build a dam of sediment around the tube openings.

Bobrobert is all for giving it a try. "Hell. I'd chew off my right foot if I thought it might get me out of these diapers."

After the first day on the opposite leg, the tube has been flowing well. Says Steve, "One more day of dry, and BR's wish will be granted."

Welcome Hope Margaret

We're uncles again, for real.

Sunday afternoon, my sister Terri gave birth to Hope Margaret, 29 hours after entering the hospital with "leakage". It lasted so long, we had two birth hour pools. Not sure who won the second one, but it wasn't us. We had 7pm and 8pm. Damn c-sections!

A sunset stroll

The Mueller Sunflowers were officially turned on last Thursday evening. It took about 30 minutes for us to make our way to the far north end of the development where the solar sculptures are "planted".

What's mayan is urine.

Things are looking up! The urologist instructed us to have BR's catheter changed twice while he was taking the antibiotics to keep the tube from reinfecting the bladder. After the first change, no more leaking!

Tuesday was cystoscopy day. Now don't get me wrong. We love this urologist, but the office is straight out of the 1970's. Everything has 30 years of wear and tear on it, and there is the faint scent of every incontinent patient lingering in the air. I would put the average age of the people in the waiting room at about 65, and I've decided to take that as a good sign that his patients stick with him.

The procedure went well -- only discovering the expected irritation on the back of the bladder caused by the constant rubbing of the catheter. It did, however, have the unfortunate side effect of bringing back the leaking. Drats!

Oh, and after the stirrup experience, BR is better equipped than ever to empathize with the entire female race.

Another Thursday. Another catheter change, and we are back to the world of dry.

A Midsummer Night's Tale

I recently wrote the following after taking a late night walk through a neighborhood adjacent to where BR and I live here in Austin. Mueller was Austin's municipal airport until 1999, and the neighborhoods to the south and east are commonly considered less than safe.

---

Realizing that I had been lamenting the lack of pedestrian exits from Mueller without ever having used one, I set off from my home on foot at 1am on a Friday morning to see just what was so scary outside our friendly confines.

I took Tom Miller to Berkman. As the housing grew more sparse, I focused my attention to the greenway. I noticed many paths beaten into the open space, but no one path that seemed more used than the others. I think that this time of year, one person walking across the greenway will leave a trail that won't spring back until the rains return. Anyway, I marveled at the paths like one would marvel at cloud formations.

Continuing right on Berkman, I came across a sign at the intersection with Manor. It announced in very small and faded letters something about a major construction project on 51st Street, with an associated storm water discharge. The rest, my 40+ year old eyes could not make out.

As I crossed Manor, I was first struck by the dramatic change in lighting. The vast majority of street lamps were not illuminated, and my intended route down Pershing was completely dark. I decided to cut across the triangular lawn in front of the Red Cross office and travel down to better lit E.M. Franklin. And just as I reached the first working street light, it turned off.

Hmm. That's not very welcoming.

It also wasn't the only street light that turned off during my walk. The surrounding neighborhoods appear to be on automated timers to save energy late at night. Their street lights also direct light down, and not out. But I digress.

The second thing I noticed was the complete lack of sidewalks in the surrounding neighborhoods, along with vegetation that grows right up to the curb.

Undaunted, I continued down E.M. Franklin to MLK. Along the way, I heard some voices in conversation, but I couldn't see the people through their privacy fence of vegetation. As I reached MLK, I noticed a construction project right on the corner with a LEEDS sign out front. I couldn't really get a good look at it, and will need to go back during the day.

Turning right on MLK, I was relieved to be back on sidewalk. I could see the lights of the 24 hour fast food restaurants at Airport tempting me, but decided to turn back down Greenwood instead. Mainly because of the house on the corner with all the amazing stuff in their back yard.

Greenwood appears to be a prime example of urban renewal. Next to charming older housing stock, there is beautiful new construction. I laughed as I passed a home with sport lawn chairs out front. You know, the kind with cup holders. One in particular still held a can of Busch.

Another house had a wooden bench swing in the front lawn. I wondered how many cool Texas evenings that family spent on their swing. I also wanted to leave my card with a note begging for an invitation the next time they were out.

As I crossed Pershing, I noticed the homes seemed to be getting more and more "secure". Where window bars were the norm, now chain link property fences were commonplace. The most "secure" property was occupied by the City of Austin Public Works. They had a poorly maintained six foot chain link fence, with a spiral ribbon of razor wire dancing along the top. I don't know about you, but I would consider any property in Mueller with razor wire to be offensive. I wonder why the city doesn't see things the same way.

As I approached Manor, I noticed that the razor wire along the fence changed into less obvious barbed wire, in what can only be taken as a public relations concession. People traveling down Manor are more likely to notice a spiral ribbon of razor wire than a thin strand of barbed wire.

Heading back into Mueller, I first noticed the silhouette of the spider against the all-night Mueller street lamps. Standing guard.

As I continued home, I realized how little the Mueller lighting added to my sense of security. I couldn't see into the dark corners that the street lights don't reach like I could just to the south. And by choosing to stay in the light, I felt more like an easy target.

I arrived home safe and sound. One square block down. Many more to go.

Simpler days

BR's brother just sent him a tweet...

johnmckellar: @dedesbigboy Amen!!!!! I sometimes long for those simpler days where people were born, lived, and died in same small town.

It got me to wondering ... has globalization done a disservice to the disabled? By encouraging families to become so scattered during good times, does the global economy leave people out on a limb in bad times?

When BR was diagnosed with MS, we were living in San Francisco. That's roughly 2000 miles from his family near Shreveport, Louisiana ...



... and my family near Chicago, Illinois ...



The best families act as life's safety nets. Better than any government health care plan. Better than Meals-on-Wheels and Goodwill and Red Cross Shelters. By encouraging family members to seek their fortune in far off lands, it would appear that we are sacrificing our family safety nets on the gamble that nothing bad will happen while we are away.

But something bad always happens, doesn't it? After all, nobody gets out of this world alive. Be it our parents, our siblings, our partners, or our children, or even the community of friends we've built around us, we are all called upon to give and receive "family" assistance sooner or later.

It's the people who don't have any family that I worry about the most. They are the ones who necessarily end up in the government safety net. They are isolated. Too proud or too sick to ask for meaningful, lasting community assistance. I pray that whatever health care reform comes out of this congress, its primary focus is on the safety and comfort of those who need it most.

As for the rest of us, I pray that we continue to reach out to one another as a community. Give of our resources and talents to support our families. And make a continuing effort to grow those families.

Bobanthony and Steve

The Circle of Life	Ticklish

What a difference a doctor makes!

Quick recap on BR's bladder issues.

BR has been having a lot of bladder pain, cramping, and urine leakage from his urethra despite having a suprapubic catheter. We saw a urologist last Wednesday who refused to do anything for BR other than deflate the catheter balloon down to 10cc, and that was at my suggestion. She insisted on a whole bunch of tests that were going to take weeks to execute.

Last Friday, BR's urinary tract infection (UTI), which the urologist has diagnosed but did not treat, had flared up so badly that we couldn't wait any longer, and called the urologist to see if the urine culture had come back. The office was closed. No warning. No notice. No antibiotics for BR. We asked the answering service to please page the doctor, but they didn't hold out much hope.

We decided to call the other urologist on BR's referral to see if they could help. The office was closed, but the scheduler was able to get BR an appointment for Monday morning. We jumped at the chance to cut ties with the first urologist, but that still didn't fix the immediate problem.

As a last resort, we got an emergency appointment with BR's primary care clinic. His doctor there had prescribed antibiotics in the past even before getting a culture -- using the test to validate treatment, rather than delay it. Unfortunately, BR's doctor was also on vacation, and the doctor covering his patients saw the referral in the records and wanted to contact the urologist before doing anything. We told his nurse that the urologist was the worst doctor ever, and we shouldn't hold our breath waiting to hear from her. Two hours later as the office was getting ready to close, they finally gave up waiting and decided to do their own urinalysis. The doctor gave us a Cipro prescription, and we were on our way.

BR's bladder pain and cramping improved over the weekend, but the leaking didn't.

This morning, we saw the new urologist. He took BR's full medical history and listened to the problems we were having. He recommended a cystoscopy as the best way to figure out what's going on inside BR's bladder. We agreed and scheduled one for early next week. He also recommended trying one of the medications that can control bladder spasms. Without hesitation, he gave us a four weeks supply of Enablex from his stash of samples and told us to start taking them right away. If the problem was gone by next week, he'd still do the cystoscopy just to validate the results.

I'll say it again. What a difference a doctor makes! I took great pleasure calling the first urologist to cancel all the tests and follow-up appointment. Worst. Doctor. Ever.

Bobanthony and I

To Medicare, or not to Medicare

The forms have arrived. After a two year waiting period, BR is finally eligible for Medicare. But how do I decide which is the best course?

• Ignore Medicare, and continue with BR on my insurance through work? Blue Cross has been very good to us, but I'm paying a lot for BR's coverage, and what the company pays is not tax-free like it would be for a married couple.


• Drop Blue Cross and put BR entirely on Medicare? It might save some money in the short term, but what about the long term? It would also be less complicated should something happen to me.


• Do some combination of primary/secondary insurance?

I am so ill prepared to make this decision, and don't even know where to begin with the investigation. I know, I know. I've had two years to think about it. I should be ready.

Beggars can't be choosers, I guess

I was able to get BR an appointment with a "Urology Team" today. I was really relieved that we wouldn't have to be making another visit to the ER. Unfortunately, the urologist wanted to treat BR as a new patient, not as a patient with an urgent issue.

"I can't treat you until I get the results of a urodynamics test"

"What does that do?"

"It measures the strength of your pelvic floor."

"We already know his pelvic floor muscles are all messed up. That's why he has the suprapubic catheter."

"Think of it as a cardiologist ordering an EKG."

"OK. Where do we go to get one."

"You'll have to come back in two weeks."

"But it hurts and leaks now!"

We finally got her to sit and listen to what lead up to the current situation. I explained about the bad tube change, and how none of the changes since have done any good. I also explained my theory that maybe the nurse was over-inflating the catheter balloon, and that was causing the bladder to spasm and release through the urethra, thinking it was full.

"How much is she putting in?"

"I think she's shooting for 30cc."

"That's way too much. 10cc should be enough. Let's check that."

She then pulls 25cc of water from the balloon, and puts 10cc back.

We scheduled the test and said our goodbyes, not really happy with the experience.

Fortunately, BR's spasms have reduced in frequency and severity. We'll see how tomorrow goes.

Waiting for the next test

Trying to reign in the worry

BR had yet another catheter tube change yesterday, a week earlier than usual. That makes three tubes in five weeks, and none have resolved the bladder cramping and pain, the leaking, and the sediment in his urine. At least it's not blood anymore.

Sediment. What a funny word for "the bacteria are renovating your bladder -- please pardon our dust."

We got a referral to a urologist today. Of course, we got it at 5:15pm, and they all closed at 5. I'm watching him like a hawk for any sign of fever. Without blood, the chances of sepsis are slim, so a fever would be more of a sign that the infection is spreading up towards the kidneys. And kidney damage is something we will definitely want to head off with an ER visit.

Pain killers. Tranquilizers. Adult undergarments. I want them to be enough to keep him comfortable until the urologist can see him. But I can tell they are not. I need a distraction.

Once Jordan and I get BR resting in bed this evening, we will be going to see the new Harry Potter movie. A couple hours at Hogwarts to temporarily displace the worry.

Picking the right tools for the job

You probably have noticed that BR doesn't do a whole lot of posting here. It's not for a lack of desire. He just hasn't been all that comfortable using the computer since going into the wheelchair. Laptop. Wireless keyboard and mouse. Display on big screen TV. Nothing made the task a convenient one.

Lately, he's taken to exploring and using his iPhone, and text messaging in particular. That got me to thinking -- maybe texting posts through Twitter would be a better way for him to keep everyone in the loop. You know, straight from the horse's mouth.

So we set up a Twitter account, and he's starting to send out tweets. You'll find his last five tweets over there on the left.

We're Uncles!

Our next door neighbors had their first child on Friday -- a little boy they've named Anthony. BR and I spent the day customizing some onesies, then paid them a visit at the hospital. Cynthia was in labor for 16 hours before the doctors called for a C-section. She is in a bit of pain still, but both she and the baby are doing fine. Looks like she and BR will be Percocet Pals for a few days.



They don't allow visitors to take pictures in the nursery, so I'll just have to put on my paparazzi hat and wait for little Bobanthony to come home later today.