The Wheel of Fortuna

Goodnight, and Thank You!

2010-05-21T18:09:00.006-05:00

It's times like this that having an engineer's mind is a terrible thing. Just when I think the post-mortem review of my caregiver performance has finished, I start all over again. The good. The bad. The difficult choices. It always ends with a big dose of humility. BR wasn't mine to save. My job wasn't to keep him alive. It was to give him the best life I could. And as much as I wish I could have done both, it wasn't meant to be.

So with that in mind, I'm saying goodbye to The Wheel of Fortuna. BR and I had an amazing life together. If what we shared here was of any use to you, well then the blog has served its purpose. I will be sticking around the MS blogging world to share in your joys and lend support when you are down. To those who have supported BR and me through this blog, you have my eternal gratitude.

Spike and Marleen at play

2010-05-14T11:03:00.003-05:00

Richie and Herrad's dogs get some "Steve time."

Amsterdam Postcards

2010-05-14T01:52:00.005-05:00

Amsterdam Centraal train station seen from hotel room

Richie in the kitchen

Herrad out of bed!

Beautiful couple and Steve

Mmmm... Fritessaus

Wisconsin and Illinois Postcards

2010-05-14T01:41:00.009-05:00

Rain and construction made for extended hours on the road

Breakfast with KimmieG and Mike

In front of their Christmas Tree home

Shut your ...

BBQ and commentary

Riding the grief roller coaster

2010-05-06T19:34:00.005-05:00

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.

Bobrobert's Memorial Service

2010-05-05T15:17:00.010-05:00

When I woke up the day after BR's death, I put iTunes on shuffle and hit play, figuring that if I didn't like the song, I could always skip it. The first song it played was Barry Manilow's One Voice. BR often told me how much he loved this song. I tried to sing along, but kept falling apart with tears. I promised myself I would find a way to work it into the memorial service.

A few days later, I decided on two additional pre-recorded songs. The first was Sandi Patty singing Upon This Rock. One of BR's secret guilty pleasures was inspirational religious music, and Sandi Patty was one of his favorite artists.

If in a simple carpenter
You see the Son of God
If you would choose to lose
When you could win
If you would give your life away
For nothing in return
Then you are where
My kingdom will begin.

The second song was To Me, a duet by Lee Greenwood and Barbara Mandrell. I know, not the Barbra most of you were expecting. BR's friend Fran Kinman introduced him to this song long before I met him. While we were dating, it became clear that this was the kind of love he was looking for, and wasn't going to settle for less.

To me
You are the hand that I reach for
When I've lost my way

To me
You are the first star of evening
The sun that warms my day

Just as sure as
I'm sure there's a Heaven
This was meant to be

No road is too long
As long as you belong to me

To me
You are the truth I've been living
Girl, I believe in you

To me
You are the love I have looked for
My whole life through

Just as sure as
I'm sure there's a Heaven
This was meant to be

No road is too long
As long as you belong to me

Just as sure as
I'm sure there's a Heaven
This was meant to be

No road is too long
As long as you belong to me

Reverend Emile was lined up to do the service and scripture readings, and Gail and Mary Katherine to play the prelude and postlude organ and piano. And as the day of the service neared, I realized that I needed to deliver BR's eulogy myself. But no matter how hard I tried, the things I wrote just didn't do justice to the life we shared together. I decided to focus on how he was always able to build and maintain a circle of friends no matter where he was, and on how much he loved those friends. With my sister Cindy by my side for support, I spoke of the dinner parties on Martel Avenue, the ex-boyfriends, and the neighbors -- many of whom were present in the Gilliam United Methodist Church that Saturday.

If I had to pick a message to highlight from Bobrobert's life, it would be to hold the ones you love close and tight, and to never stop looking for people to love.

The service closed with One Voice. I sang the first verse solo.

Just one voice, singing in the darkness
All it takes is one voice
Singing so they hear what's on your mind
And when you look around you'll find

My family joined me for the second verse and bridge.

There's more than one voice
Singing in the darkness
Joining with your one voice
Each and every note another octave
Hands are joined and fears unlocked

If only one voice would start it on its own
We need just one voice, facing the unknown
And then that one voice would never be alone
It takes that one voice

Then we moved out into the congregation, hugging anyone who would have it. Standing in the aisles, we finished the song.

It takes that one voice
Just one voice, singing in the darkness
All it takes is one voice
Shout it out and let it ring
Just one voice, it takes that one voice
And everyone will sing

Celebrating Bobrobert

2010-05-02T11:11:00.004-05:00

I'll be writing more about the wonderful memorial service and celebration when I return to Austin. But this was just too good not to share right away.

Hazel Vickery was BR's fifth grade social studies teacher. Back then, she taught BR how to dance the Charleston. At the memorial celebration, she entertained the crowd with a couple numbers at the piano. Guaranteed to bring a smile to your face.

Belcher Postcards

2010-04-30T09:12:00.005-05:00

These last two photos are of Dede's place of work. She is nicknamed the "Dumpster Diva" for her ability to rescue discarded items and beautify her surroundings.

Self portrait postcards

2010-04-28T00:45:00.003-05:00

BR took these photos of himself on my birthday. I found them in his iPhone.

BR's brother preaches about love

2010-04-27T15:04:00.005-05:00

In this sermon, BR's older brother John talks about how important love is, and how he wishes he had been able to more fully open up his life and his heart to his brother.

John - Bobrobert was so incredibly proud of you and all you have accomplished. And although he sometimes said you were being "made for TV," he never once doubted that you loved him with all of your heart.

Sanctuary | Apr 18 | 11:00 from White's Chapel UMC on Vimeo.

I get by with a little help from my friends

2010-04-27T08:31:00.004-05:00

I wasn't there.

I had come home to shower and meet the housekeeper, and was getting ready to walk out the door when Chad and David came in and told me that BR had passed. I think he didn't want me to see it happen.

They drove Jordan and me back to Christopher House, where I was able to say my final goodbye to the body that loved, protected, and supported me for so many years. In his final moments, he was surrounded by people he loved, and I will be forever grateful to them for that. We packed up our stuff, and with one final sniff, we left it behind.

There is no way to fully describe how my friends and neighbors came together to give BR a transit night like no other. The days that followed have been full of laughter, tears, memories, food, and OCG (obsessive-compulsive gardening).

Today, the arrival of my sister Terri and her daughter Hope will mark the beginning of the run up to the memorial service on Saturday. I've started to pick out the music. Beth and Dede are coordinating the celebration that will follow. People who loved BR will be traveling from far and wide to Belcher to share their grief and memories.

It's the sharing of BR stories that is sustaining me right now. Most I've heard. Some are brand new to me. He's touched so many lives.

Sharon grieves

2010-04-25T10:55:00.001-05:00

Sharon is proof that we all grieve in our own way.

Bobrobert's Obituary

2010-04-24T15:24:00.005-05:00

This will run on Friday in Dallas, Shreveport, Baton Rouge, San Francisco, and Austin.

Robert Ray McKellar passed away on Friday, April 23rd, 2010 at Christopher House in Austin, Texas from complications due to multiple sclerosis. He was 49 years old. A memorial service will be held at the Gilliam United Methodist Church, in Gilliam LA on Saturday, May 1st, 2010 at 2 PM. Officiating will be Reverend Emile Rousseau. A celebration of his life will follow at the home of Beth and Mickey McDade in Belcher LA.

Born on December 27th, 1960 in Shreveport, Louisiana to Diana Meares McKellar and Benny Ray McKellar, Bobrobert was raised in an extended family so full of love, it's frightening. An artist and educator by trade, he was also looked to as a trusted friend and counselor by those who were blessed to know him.

On October 10th, 1992, Steven Landherr joined Bobrobert in climbing a waterfall in the Appalachian Mountains, where they exchanged vows of eternal love and commitment between themselves and God. Their love for one another was ridiculously strong, weathering the unfathomable stresses and pain of MS as it quickly stole many of his abilities and eventually his life. During their time together, they lived in Dallas TX, Baton Rouge LA, San Francisco CA, and Austin TX.

Bobrobert is preceded in death by his father Benny McKellar, his maternal grandparents Doris Pearce and John J. Meares, and his paternal grandparents Leveda and Lyman McKellar. He is survived by his husband Steven Landherr of Austin TX, his mother Diana McKellar of Belcher LA, his brother John McKellar and wife Debra of Keller TX, his nephew Jay McKellar of Little Elm TX, his niece Chandler McKellar of Keller TX, his aunt and uncle Beth and Mickey McDade of Belcher LA, his cousins William McDade and wife Kelly of Belcher LA, Paige McDade and husband Frank Hendrick of Belcher LA, and Eric McDade and wife Hillary of Shreveport LA.

Memorials may be made to Equality Texas at http://tinyurl.com/eqtexasbr, or The McDade House, 1825 Warrington Place, Shreveport, LA 71101.

He's gone

2010-04-23T15:16:00.002-05:00

The next phase

2010-04-22T21:02:00.004-05:00

BR just got a beautiful batik scarf from Gina in some of the new colors she is using. Makes a lovely IV pole drape!

I didn't get much sleep last night. BR was very restless, but it was a different kind of restless. I could tell he wasn't in pain. The doctor told us this morning that she is pretty sure he is experiencing "terminal delirium" during which he gets restless, has conversations with people who aren't there, and can even try to get out of bed. So we have moved on from treating his pain, to treating the physiological issues that cause the dying brain to be restless. He will continue to receive his pain medications, but they won't be adjusted going forward.

I asked the doctor if we should be encouraging him to "let go and pass on." She said that at this point, he is probably hearing what we are saying, recognizing the voices, but not necessarily catching the intended meaning. She recommended that we tell him we wish he wasn't going, but it is OK that he does. She also recommended giving specifics about how we are going to continue on once he is gone. Not just that I will continue my relationship and care for his mother, but that I will call her regularly and still celebrate holidays with her. Basically, we should put ourselves in his helpless position and imagine the things we would want to hear.

He has received a lot of voice messages from friends that I play for him each evening. With each voice that he hears, he seems to recognize the person speaking and to enjoy what they say. I feel the same way about the comments left here. Thank you!

The business of dying

2010-04-22T00:28:00.003-05:00

Sorry I'm not much for words right now.

Tuesday, BR had a bit of a rally, charming his guests during his moments of clarity.

Wednesday has seen him sink deeper into the illness. I can count the number of true interactions with him on one hand, and they were no more than a single back and forth. His heart rate is hovering around an unsustainable 120 bpm.

I made a list of the number of accounts and possessions that are in BR's name -- there are only 4. I deposited his stock certificate into his brokerage account, and hope I can liquidate it soon. Then I will be able to close it, his bank account, and his credit card. His mother will be given the meager proceeds, as we had planned.

I also spoke with the hospice social worker, who put me in touch with a nearby funeral home that will handle the cremation. After discussion with his mother and aunt, we have decided to buy a magnolia tree, and plant it on their property in Louisiana, using his ashes as fertilizer. That way he will always be close to his family, and his story can be passed down to future generations.

His aunt also generously offered to host a memorial party at her home in Belcher, and I have accepted. I want to make it one they will talk about for decades to come. Tastefully, of course. :-)

Calmer nights, busier days

2010-04-20T07:58:00.005-05:00

"Turn that off. I don't think I can handle this and Barbra Streisand." BR's mother, Dede had arrived with tears in her eyes, followed by her sister, Beth.

BR has slept peacefully now for two nights in a row. At the first sign of restlessness, I have been calling the nurse for breakthrough pain medication, but I've only had to call once at night. I'm very happy with the progress keeping his pain down.

We are now in full visitor mode here at Christopher House. In addition to Dede and Beth, our neighbors Cindy, Damaris, and Suzy have made and delivered dinners. BR's brother John, niece Chandler, and John's associate pastor Todd drove down from Keller for the day. Scot, Cathy, and Sharon are here from Dallas. Chad and David have flown in from Colorado, and Jay from Miami. Their presence is a great comfort. There's nothing like laughing with family and friends to take the edge off.

BR was awake, but not totally alert for most of the day yesterday. Most of what he says is unintelligible, and we treasure the moments when he is able to clearly express his feelings. For example, when I told him Jay was coming, he let out a long "oooh, Lord!"

Yesterday morning, it looked as if BR was down to his last hours. His heart was racing. His blood pressure was very low. His hands, feet, knees and elbows were purple and splotchy. After a full day of company, his vitals stabilized. I'm guessing that he refuses to be left out of a good party.

The doctors added IV Ketamine to BR's pain med cocktail. Yes, Bob Duff -- BR is now mainlining Special K. And it seems to be working. There was no restlessness at all last night, and he woke up this morning asking for "happy coffee." Nevermind that he doesn't drink coffee. I'm trying hard not to get my hopes up, and instead I am just living in the present and letting the future take care of itself.

I need to wrap this up, but not before thanking Herrad, Richie, Anne, Stephany, and Patrick, for rallying the MS blogging world to our support. It's a strange and marvelous community, and I'm glad to be a part of it.

And finally, I've set up an online gallery for people to share their favorite photos of BR. If you have some to share, just go to http://gallery.me.com/bobrobertmckellar/100173, and click the "Upload" button in the toolbar.

Trying to find comfort

2010-04-19T00:44:00.003-05:00

What a difference a year makes. Last year, friends joined BR and me in cheering in the MS150 riders. This year, we had to cross the line of riders to bring BR to Christopher House.

As we start our third night of what the hospice nurses call his body "actively dying," I'm trying to find comfort in the outpouring of support from our friends. Comfort in having Dede and Beth and Jordan by our side. Comfort in the many glimpses of memories that flash across his iPad screen. But for some reason, all they do is make me cry. Not a very comfortable emotional state.

Comfort is found in the ordinary. This is anything but. So I've put the Hello, Dolly DVD into the laptop, and I'm singing along -- just like BR and I have done with friends so many times before.

Another rough night

2010-04-18T13:03:00.002-05:00

BR didn't sleep well at all last night. In addition to moaning and yelling, he started forming sentences. "Honey, please help me" was repeated for six hours straight. Unfortunately, this was a monologue, and I couldn't get him to give me any instructions on what needed fixing. So I continued with the Ativan until morning.

Then around 9am, I asked him how he was doing, and he responded, "my legs and feet are killing me." I pushed my luck and offered him some water through a straw, which he eagerly drank. Not knowing how long this swallowing opportunity would remain, I quickly gave him his oral meds hoping they would reduce his leg pain. Before long, he was finally sleeping.

I called the hospice nurse to ask for more help keeping him comfortable. He called the doctor and they recommended checking BR into Christopher House for in-patient pain management. BR is now comfortable in a private room -- one that has that has Willie Nelson as its generous benefactor.

Soul crushingly painful decisions

2010-04-17T19:51:00.003-05:00

Sitting alone in my living room, listening to a spring thunderstorm. BR has always loved thunderstorms. It has been raining most of the past few days. I'm not the only one crying.

The combination of Ativan and Methadone has BR resting comfortably once again. In consultation with his mother and brother, I have decided to discontinue the antibiotics. This beautiful, charming, light soul doesn't deserve to be weighed down any longer by a body that has betrayed him. It's so hard to take myself out of a decision like this. But when I do, I know that he has been looking for an escape from his body for a while now, and I can't deny him this chance.

Benny, come take your Bobrobert by the hand and show him where to get a good, stiff drink.

Rough night

2010-04-17T11:40:00.003-05:00

BR hasn't regained consciousness since 8pm last night. He was moaning and yelling off and on most of the night, but since I couldn't get him to swallow anything, there wasn't much I could do. When the hospice nurse came out this morning, she told me to give him the methadone rectally, and to dissolve his Ativan in 1/2 cc of water, then use a medicine syringe to put it between his lower lip and gum. He's now resting comfortably again.

The hospice doctor offered two options: admit him into a hospital for a full battery of tests and treatment, or keep him at home and comfortable. I chose the latter -- it's what he wants. We will continue with the IV antibiotics, and the next 24-48 hours will be make or break.

Light a candle and say a prayer for him, please.

His worst pain

2010-04-16T18:11:00.003-05:00

BR is hurting something awful today. When the hospice nurse came out this morning to check on him, he was running a low grade fever and sweating profusely. Despite drinking quite a bit of water, he's not putting out much urine, and what's there is turning brown. Also, like two years ago when he had the abscess in his mouth, he is beginning to struggle to comprehend his surroundings, and he is repeating even the most simple of thoughts dozens of times.

The urine culture taken earlier this week showed only the colonized bacteria, not anything growing out of control. His lungs are clear. His skin isn't yellow. So where on earth is this infection hiding? The doctor has decided to take the "big hammer" approach and start IV antibiotics this evening -- twice a day for 10 days. Since hospice is administering them, he will be allowed to remain at home. Nothing drives home the fact that BR is really sick like 20 IV balls in the fridge.

The PICC line nurse just left after an 80 minute procedure to insert the IV catheter. He also got a peripheral IV line, which will be used until an X-ray can confirm the catheter placement. She also taught me how to flush the catheter -- really pretty easy. The hospice nurse should be here any minute to draw blood and start the first antibiotic ball.

I'm desensitized to all but his worst pain.

2010-04-13T12:40:00.003-05:00

"It really hurts when you put on my socks."

"All the stops and starts in the car really hurt."

"I've got to get out of this chair. I'm burning up."

"I've got to get out of this bed. I'm burning up."

These are some of BR's primary daily issues affecting his comfort. None of them are new. We've seen doctor after doctor. We've tried many changes in routine. Still, these complaints linger.

Even remaining open-minded to suggestions from others on how to better manage his symptoms is a struggle. After so many failures, I've become numb. I do what's worked best to minimize his discomfort, and try not to beat myself up that the solutions aren't complete. I no longer believe a complete solution exists.

BR isn't in the same place, and rightfully so. He's the one in pain. In his eyes, there is always something I could be doing differently to make him feel better. I feel like a defective life preserver around a person who is never going to be rescued.

Despite my resignation on the daily discomforts, we are still fighting the occasional waves that overtop us. BR swallowed a crown a couple weeks ago, and is scheduled for a permanent replacement on the 19th. In the mean time, the temporary crown has fallen off twice. Thank goodness he hasn't swallowed it as well, and Jordan has been able to handle the multiple visits to the dentist.

Then, as I had previously suspected, BR body temperature spiked over the weekend, hitting 102.7 before I called the weekend hospice nurse. We agreed that Percocet would both reduce the fever and relieve his skin pain, and after the first dose, his temperature came down. It has spiked back up a few times since then, and is responding well to pills. His case manager came by on Monday to check on him and collect a urine sample. Until we get the results, I'll keep him as comfortable as I can.

We now return you to your regularly scheduled blog ...

2010-04-09T00:37:00.003-05:00

When we last left you, BR had entered hospice in an effort to bring his pain levels down. The hospice doctors had taken him off Fentanyl and put him on Methadone, with a modest reduction in pain.

Over the last two months, we have been gradually increasing the Methadone, but aren't seeing further benefits. I'm sure the next steps will include trying a different medication, and we've asked the doctors to start looking into alternatives.

BR's skin sensitivity is really hurting him. This is usually a sign of an infection, but I'm at a loss as to where. He just finished a suite of Levaquin to clear a Cipro resistant UTI. After reading up on Levaquin, it seems an odd antibiotic choice given the potential negative affects it can have on BR's already compromised central nervous system.

At the peak of the UTI, he was passing blood clots in his urine. Pretty frightening at first, but some online research shows it to be a fairly common occurrence among long term suprapubic catheter users. Once the UTI cleared, the clots stopped.

So the increased skin sensitivity remains a mystery. I'm going to start monitoring his body temperature today. Without a secondary sign of infection, like a temperature or cloudy urine, we have to treat the sensitivity as yet another mysterious and disabling MS symptom.

I feel bad saying this, but I've been feeling disappointed in hospice. I heard from so many people that they would swoop in and take care of everything, but that just hasn't been the case. BR's biggest needs are prescription maintenance and counseling. Before hospice, I was able to refill his non-triplicate prescriptions 24/7 at the local Walgreens. Hospice requires 24 hours notice, the refill requests must go through the case manager who isn't always available, and the pharmacy is only open M-F 8-5. Given how easy it is to predict when BR will run out of a refill, I asked the case manager to put a reminder in their computer to automatically order refills, but that request was denied. Given that hospice refills in 2 week increments, the burden on me has more than doubled.

As for counseling, hospice provides chaplains. Now BR takes a while to warm up to a person before he opens up, and just as he was getting to that point, the chaplain fell ill. After three weeks of missed appointments, BR requested a replacement chaplain. I hope we get one soon.

So that's where we stand. Trying to ignore the pain. Trying to keep pushing for what we need. Trying to savor the moments of joy.

2010 Birthday Guilty Pleasure Finale

2010-04-08T23:30:00.002-05:00

As the end of my birthday draws near, I have to admit that in the last 12 months, I've discovered the joy of Family Guy. I didn't think I would like it. But I did.

There has to be a better way to end this polluted stream of infantile guilty pleasures than a fart joke, but I can't think of one.

2010 Birthday Guilty Pleasure #13: Blonde Jokes

2010-04-08T22:30:00.001-05:00

Stolen shamelessly from a friend's Facebook notes:

A vicar books into a hotel and says to the blonde receptionist,

"I hope the porn channel in my room is disabled."

"No," she says, "It's just regular porn... you sick bastard."

Feel free to donate your favorite in the comments.

2010 Birthday Guilty Pleasure #12: Train Wreck TV

2010-04-08T22:00:00.001-05:00

I fell asleep one morning with the TV on. When I woke up, there was a large, mannish black woman on my screen heating a Slim Jim with a cigarette lighter. I've been hooked ever since.

2010 Birthday Guilty Pleasure #11: Artisanal Chocolates

2010-04-08T20:00:00.003-05:00

With the demise of Joseph Schmidt Confections last year, I've been in the market for another artisanal chocolatier. So when the new tenant at the storefront on 16th street in San Francisco turned out to be Saratoga Chocolates, it piqued my curiosity. We asked our friend Jeanne to bring a box with her on her visit last week, and I have to say I'm really enjoying the variety of flavors packed into the box. The chocolates themselves are old-school sized -- not the giant rounded mountain that was the Joseph Schmidt truffle -- which is fine by me.

2010 Birthday Guilty Pleasure #10: Easter Chapeaux

2010-04-08T18:00:00.001-05:00

Just like the Texas Bluebonnets, the Easter Chapeau party is a welcome sign that Spring has arrived.

2010 Birthday Guilty Pleasure #9: iPad Games

2010-04-08T16:00:00.001-05:00

I got BR an iPad because he really likes his iPhone, but sometimes struggled with the small keyboard. With the optional case that keeps it from sliding all over his lap, the device seems to be a perfect fit.

Then I discovered the game apps. Up until now, I've only dabbled into a couple brain games for my Nintendo DSi. The iPad games are amazing in comparison. The big, bright, beautiful touch screen seems made for gaming.

I started out slowly, playing some games BR had purchased for his iPhone. Flick Fishing didn't play very well, but Skee Ball, Enigmo, and the Moron Test worked great in 2x mode.

Then BR's niece Abby suggested we try Tap Tap Radiation, a free app designed for the iPad. Think Dance Dance Revolution for couch potatoes. The music is fantastic, and the higher levels are very challenging. Even BR enjoys tapping to the beat.

I then took a chance on a for-pay app called Flight Control HD. I think I spent five hours playing it that first night. A perfect game for someone who is used to keeping a lot of plates spinning.

2010 Birthday Guilty Pleasure #8: FarmVille

2010-04-08T14:00:00.001-05:00

This one is really embarrassing. BR's mama is so farm-proud. Her Facebook profile is filled with "I fertilized this" and "I found these eggs." My initial reaction was, what do you get out of it? Produce? Money? Prestige? Notoriety? The last two seem to be the primary motivators.

BR started a farm, but it soon became clear that he wouldn't be able to keep up with it on his own. Crops wilted. Gifts languished unopened. I reluctantly offered to check on it a couple times a day to help keep it moving forward. Big mistake. My name is steve, and I play FarmVille.

Our big thing is to delete everything from time to time and completely rebuild from scratch. The feeling of a virtual purge is very therapeutic.

2010 Birthday Guilty Pleasure #7: The Simpsons

2010-04-08T12:00:00.001-05:00

20 years and they still make me laugh. Who hasn't had this argument with their spouse?

2010 Birthday Guilty Pleasure #6: Tacky T-Shirts

2010-04-08T10:00:00.003-05:00

Austin's 6th Street provides many opportunities to purchase t-shirts which appear innocent, yet have an off-color hidden message.

2010 Birthday Guilty Pleasure #5: Alphabeat

2010-04-08T08:00:00.004-05:00

I saw Alphabeat last month at the South by Southwest Music Conference here in Austin. It's got a good beat and it's easy to dance to.

[there may be an initial commercial]

[If you are reading this in an RSS feed, please visit the original post to view the video]

2010 Birthday Guilty Pleasure #4: Drunk History

2010-04-08T06:00:00.000-05:00

This is what happens when you get a person drunk and ask them to explain an historical event.

Drunk History vol. 2 - Featuring Jack Black from Jack Black

Drunk History vol. 2.5 - Featuring Jack Black from Jack Black

2010 Birthday Guilty Pleasure #3: Angry Lesbian Poetry

2010-04-08T04:00:00.004-05:00

From the BBC, I present Rosie Lugosi, the Lesbian Vampire Queen performing her poem "Angry."

2010 Birthday Guilty Pleasure #2: South Park

2010-04-08T02:00:00.002-05:00

South Park is back again for another appearance this year. In this clip, Cartman has turned to crime to get his KFC fix, while the men of South Park have given themselves testicular cancer to gain access to medicinal marijuana.

2010 Birthday Guilty Pleasure #1: Mutha Chucka

2010-04-08T00:00:00.002-05:00

We kick off this year's birthday celebration of guilty pleasures with my favorite drag queen that I know in real life, Mutha Chucka. Here he is performing Kate Miller-Heidke's Are You F@#ing Kidding Me? (Facebook Song).

More YouTube videos of Mutha Chucka here.

It's coming ...

2010-04-07T17:31:00.004-05:00

WARNING: At the stroke of midnight (UTC-5), this blog will be taken over by 24 hours of political incorrectness, embarrassing admissions, and decadent indulgences. Please do not adjust the vertical. Please do not adjust the horizontal. Please protect the children.

BR's iBOT takes a licking and keeps on ticking.

2010-03-31T22:09:00.006-05:00

The iBOT repair man arrived on the 22nd to assess the damage to the iBOT after BR's fall down the front steps. I had noted that the headrest was bent, and that a cast aluminum panel that held the right leg rest in place had cracked, leaving the leg rest usable but unstable. After describing the incident to the repair man, he gave the chair a once-over. To his surprise, the two items I noted for repair were the only things he could find wrong as well. Whew! That thing is really built like a tank! He ordered the parts and returned the following Wednesday to make the repairs -- just in time for us to load up in the minivan and head to Louisiana for Nanny's memorial service.

BR with Sarah-Beth in Belcher.

Jordan and Steve on the couch.

It was great to spend the weekend with family. Jordan joined us for the road trip, and got to experience first hand the brand of love grown only in Belcher. Food and drink were plentiful, and I took time to perform some routine maintenance on BR's mother's and uncle's computers. Uncle Mickey's had gotten into a state where antivirus protection failed to start, and Windows patches failed to install. I found the solution in Microsoft's knowledge base, and after a few hours of downloads, ACL resets, and Service Pack installations, the computer rebooted without any errors and protected with antivirus.

When we returned to Austin, we were greeted by our friend Jeanne. She had flown in from Oakland to spend some of her spring break with us. We love Jeanne, and hadn't seen her since her 50th birthday celebration at Jazz Fest in New Orleans last year. She was a delight as usual, and we took advantage of the beautiful weather by spending Tuesday walking in the neighborhood park, and eating a Polynesian-Mexican meal at the Hula Hut on Lake Austin.

Jeanne and BR at the greenway waterfall

I return to work tomorrow, so I spent today planning our Easter Chapeau party on Sunday. I also made a run to the Home Depot to pick up a 6"x6"x8' post to protect BR from the front steps when he's on the porch. With the post in place, BR will be able to spend time unsupervised on the porch once again. Yippee!

Front steps before ...

... and with the post in place.

In Memorium: Doris "Nanny" Pearce (1920-2010)

2010-03-27T13:20:00.003-05:00

Nanny was BR's maternal grandmother. I first met her in the early 1990s at BR's cousin Billy's wedding in Dallas. She was energetic, observant, outspoken, and as BR warned me, somewhat judgmental -- a warning I had managed to forget as I sped from work to their hotel on my motorcycle, still wearing a "Sorority Girls from Hell" t-shirt. Not one minute after greeting her, I heard her read the t-shirt out loud, and then let out a laugh that at the same time was warm and welcoming, and yet said "can you believe what this idiot is wearing?"

Nanny was a picture of southern gentility. She had high expectations of her family, which occasionally lead to awkward secrets. In the early years of our relationship, BR was adamant that Nanny was not to know that he was gay. After about the second time I joined him on a trip home to Louisiana, Nanny decided that I would be a perfect boyfriend for his cousin Paige. This matchmaking continued until shortly after BR and I married in 1992, and he decided to come out to her. Paige, however, continued to refer to me as her "backup boy" for many years to come.

Nanny was frequently concerned with BR's appearance. The years when he would grow his hair long, she would encourage him cut it to a respectable length This prompted a Christmas present one year containing nothing but his hair.

In the years after the passing of her second husband, Frank, Nanny became increasingly introverted. BR's mother Dede moved into a home built on Nanny's property to be close by, Between her, her sister Beth, and their families, Nanny was lovingly cared for through her passing Thursday morning.

I think I'll get a haircut today.

We are uncles yet again!

2010-03-24T14:56:00.003-05:00

This time it's figurative. Another neighborhood couple just had their first baby, a beautiful little girl named Josephine. We've made up another batch of custom onesies to welcome her to the neighborhood.

BR's world just shrank a bit

2010-03-17T15:27:00.003-05:00

I was upstairs in a teleconference for work, when I heard a whole lot of commotion and yelling from down stairs. BR was down there with some friends making dinner, so at first I just assumed they were having a good time and "getting happy." In the second wave of shouts, I could make out my name and a sense of urgency. I stuck my head out the office door to see what was going on. "Bobrobert has fallen off the porch! Get down here quick!" A choice expletive and a quick good-bye to the conference, and I was flying down the stairs.

BR was laying on the sidewalk at the foot of the porch stairs, his iBOT on its side and partially on top of him, sounding the all too familiar "red alarm." I powered off the chair, and tried to lift it out of the way, but it was good and wedged on the railing. So I turned my focus to BR.

"Are you OK?"

"Yes." He sounded a little shaken up.

"Did you hit your head?"

"No, sir." Whew. I felt around his scalp just to make sure.

There was no blood and only a few noticeable scrapes on his elbow. At this point, I wanted to ask, "How did this happen?" but realized there would be plenty of time to play Monday morning quarterback later.

Given BR's recent osteoporosis diagnosis, we were all a bit concerned that he may have broken some bones. Without moving him too much, we got him comfortable on the sidewalk with a blanket and the wheelchair cushion for his head, then called the hospice after-hours nurse for help. He took our information, then advised us to call 911, because BR would likely require x-rays in the ER. While a neighbor called, I had Jordan gather all his medication, and I grabbed his DNR. The ambulance arrived and soon he was on a stretcher and on his way to the hospital.

BR hates the ER. His medications give him intense dry mouth, and he's never seen without a bottle of water. So it irks him to no end that from the moment the EMTs arrive until he's seen by the ER doctor, he's not allowed a drop of water. But that doesn't stop him from asking, begging, and pleading. All told, he was without water for a little over an hour, and very happy when he was finally given some.

The doctor ordered some x-rays and a Dilaudid injection. We just laughed, as previous experience with Dilaudid has shown it to have absolutely zero effect on BR. He got Demerol instead.

They took the x-rays, which didn't show any fractures. The doctor wanted to order a CAT scan, but we decided against it. All told, we were in the ER for three hours and left with peace of mind that his bones were still intact.

But things won't be the same. The front porch was BR's place to be social with the neighbors -- one of the few daily social opportunities he has apart from Jordan and myself. He will now require supervision when on the porch. An extra set of eyes to make sure this type of thing doesn't happen again. A little less independence.

Jordan's first motorcycle lesson

2010-03-14T01:38:00.003-06:00

Saturday was Jordan's 20th birthday. When I asked her what she wanted to do to celebrate, she said she wanted to learn to ride the motorcycle. She was quite successful.

One project down

2010-03-12T09:25:00.002-06:00

18 months ago, I forgot to remove the casters from BR's hospital table before the movers took it. For 18 months, it hasn't rolled properly. Last night, I finally pulled out the drill and box of miscellaneous fasteners, and fixed the damn thing.

Regaining focus

2010-03-10T10:05:00.003-06:00

Spring has arrived here in Austin. Highs will be in the 70s all week. BR and I even slept with the windows open last night. Very refreshing.

Spring also means the end of the cedar allergy season. For me, cedar allergies are not only a runny nose and blocked sinuses and persistent cough, but also a lethargy that I find difficult to overcome. Pseudophed is just about the only thing that gets me through. Thank goodness I won't have to deal with that again until November.

I got a letter from my employer about a week ago. They are switching insurance carriers. Anthem Blue Cross has made headlines lately for outrageous rate hikes, prompting my employer to take their business to Aetna. I'm going to take this change as a sign that it is time to move BR to Medicare and a supplement plan. The main thing holding me back before was inertia, and this was just the push I needed.

BR and I have been struggling with a lot of negativity lately. The word "no" seems to flow out of his mouth very easily, expressing a contrary opinion over even the silliest of things. When I have the strength, I can laugh and let it slide. When I don't, it leads to some pretty heated arguments. I even find myself taking advantage of his sedation, allowing him to sleep longer than I know he would like in order to put off having to deal with the inevitable stream of criticism. This isn't one of my prouder admissions, and I'm taking it as a clear sign that it is time for both of us to seek some counseling.

I'm also taking it as a sign that it is time to stop working from home so much. My employer just moved into new offices on the edge of town with magnificent views of the Texas hill country. My hope is that the daily trip into the office will create some perspective on life that is impossible to maintain when I only leave the house to make groceries. I'm thinking of it like mini trips to California.

I wanna be sedated

2010-02-22T11:51:00.002-06:00

BR's been under hospice care for a bit over a month now, with the primary goal of getting his pain under control. They took him off the Fentanyl patches and percocet, and put him on Methadone and liquid morphine. Initial indicators were good. The pain immediately changed to something more tolerable, but still painful -- 4-6 instead of 7-8 on the pain scale. Since then, they have been gradually increasing the methadone, and he's now consistently a 4-5. With the last increase, though, sedation has started to rear its ugly head. He slept for a large part of the day yesterday. We'll have to wait and see where this new dosage settles, but there's a good chance we won't be able to increase again without compromising his ability to take his other oral medications on schedule.

When he is awake, though, he's in a much better frame of mind. And for that, I'm thankful.

Ready for the next round

2010-02-20T16:35:00.005-06:00

What a refreshing bit of travel. With BR safely in the care of Jordan, I was able to focus on work in California for a week and family in Illinois for a weekend. However, as the time grew closer to head back to Austin, the call from New Orleans grew stronger and stronger. "Carnival." "Carnival."

Ring. Ring.

BR: Hello?

Steve: Hi Bobrobert! Everything going OK?

BR: Fine. How's the family?

Steve: Great! Mom's doing so well, She spent the night here last night, and thinks she'll be out by next week.

BR: And Hope? How cute is she?

Steve: Adorable. A little fussy today, but that's probably just because she's not used to having so much commotion around her. Hey, I've got a question.

BR: The answer is yes.

Steve: Yes? You don't even know the question.

BR: Yes, you can go to New Orleans. But for every dollar you spend on this side trip, I get to spend one on myself.

Steve: Deal!

BR: And be sure to text me lots of pictures.

[Note to T-Mobile: Add extra 3G capacity to the French Quarter during Mardi Gras. It's frustrating to get an unusable 3G signal.]

Adding those extra two days to the trip was the best idea. Two days for myself without worrying about BR or family. I came home happy and ready to continue providing care and comfort to BR, ready to tackle more of the overdue household tasks, and ready to face whatever MS decides to throw at us next.

Bonus round: New Orleans Postcards

2010-02-20T15:08:00.004-06:00

Last minute change of plans

Landing at Louis Armstrong International Airport

Orpheus Parade

She won first prize

Running into old friends

Bead toss

Lunch with Karen

The party's over

Illinois Postcards

2010-02-20T13:33:00.005-06:00

Landing at Chicago's Midway Airport

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

Meeting my niece, Hope

California Postcards

2010-02-20T13:12:00.004-06:00

Oakland International Airport baggage claim

San Mateo Bridge, late afternoon

Lunch with co-workers, through cooking demonstration mirror

Fog rolling in off the San Francisco bay

Former neighbor Sabine and daughter Anouk

Special Valentines

2010-02-12T10:56:00.003-06:00

I really believe that Mom's amazing recovery over the past six months would not have been so amazing if it weren't for little Hope, who is amazing in and of herself given all my sister went through to have her.

Here are my girls playing around at Thanksgiving.

BR, you are always my special Valentine, and I wish you could be going with me.

Now face west. Now face north.

2010-02-11T12:04:00.005-06:00

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.

Services at 11am

2010-02-06T09:06:00.004-06:00

BR and I are in Dallas. Well, Richardson to be exact. We are busily making our way through the morning routine, which started at 7am, so that we can get checked out and be at the funeral home by 11am. It's been quite a week.

We got a call from our dear friend Cathy Monday evening. Through tears, she told us that her husband had passed away suddenly. Whatever fuss BR and I were having at the time was immediately set aside, and we started in on the grim duty of spreading the word to our circle of friends.

Tuesday morning came, and I knew we needed to get to Dallas, to Cathy, to help in any way we could. A day of schedule shuffling and planning later, and I was in a rented car on my way. BR would stay behind with Jordan, and I would fetch him on Friday for the services.

The week that followed was filled with love and laughter and tears and sorrow and memories. And beer. Lots of beer.

So as we pull it together to say our farewell to Todd, I am comforted to be witnessing a beautiful example of family and friends coming together to navigate the survivor's storm.

Geaux Saints!

2010-01-25T03:27:00.005-06:00

The Hospice Austin team officially took over BR's care on Wednesday. We met with his nurse and care coordinator that afternoon, and immediately replaced his Percocet with liquid Morphine for break-through pain. This brought about a small amount of pain relief, but not nearly enough to be called success.

Next, we met with the hospice doctor on Thursday, who decided to switch BR from Fentanyl patches to Methodone for sustained pain relief. We made the switch Friday, and again pain was knocked down another notch. So on average, BR is still in a great deal of pain, but feels better than before.

The Methodone has brought with it a bit more drowsiness, but not to the point where BR can't wake up and enjoy the day. It will be interesting to see what happens as the dosage is increased.

My niece, Jordan, has rejoined us as of Sunday to help out once again with the daily caregiving duties. It wasn't a moment too soon, as I had somehow thrown out my lower back while making groceries Saturday evening. Luckily, BR was already in bed, so the next transfer wasn't going to be until Sunday for the morning routine. Maybe I would feel better in the morning.

No such luck. When I woke up, my back was just as bad, if not worse than it was when I went to bed. So I convinced BR to delay the morning routine until Jordan arrived. And like an angel, arrive she did. She immediately took care of BR, then joined us as we watched the Saints advance to the Super Bowl. What a great evening!

Just breathe

2010-01-19T11:15:00.004-06:00

I've had a cough since November. At first it was non-productive, but very annoying. By the end of the holidays, I'd developed full blown bronchitis. Combined with my annual cedar allergies, and I have only been capable of life's bare essentials for several weeks. A suite of antibiotics, Benedryl, and some codeine cough syrup later, and I'm back to the living.

We had a hospice assessment interview about a week ago. The intake nurse was as nice as nice can be, but she didn't hold out much hope for hospice. Based on what she'd seen, BR's prognosis didn't fall within the six month life expectancy. However, she did offer to have their palliative care doctor consult with the Which doctor on BR's pain management.

Oh, did I forget to tell you that we are staying with the Which doctor? After the Prialt trial failed in early December, we met with a new pain management doctor here in Austin that was recommended by MD Anderson. We were told that he would be open to helping BR through the transition to palliative care. Nothing could have been further from the truth. This doctor took one look at BR's medication list, and decided that he could not continue down that path. Being as open minded as we could, we asked what he recommended.

"You need to come off of these meds so we can see how much pain you are really in."

That didn't sound like much fun.

"What level of pain do you consider acceptable, Doctor?"

"So much of pain is how the mind perceives it. Consider if you won a million dollars in the lottery, and then I came up and hit you on the thumb with a hammer. You'd be pissed off with me, but you'd get over it. Now consider if you lost your ability to walk, and then I came up and hit you on the thumb with a hammer. You would likely fall into self pity that would only make the pain worse."

"Could you just not hit me on the thumb with a hammer?"

The whole time we were with the doctor, nurses and PAs were interrupting every five minutes or so to get his signature on different forms and prescriptions. After about 30 minutes, BR had had enough.

"Thank you for your time, Doctor. You obviously have more pressing things that need your attention."

As we left, the receptionist asked if we needed to make a follow-up appointment. "I don't know," I honestly responded. We now had a neurologist recommending hospice and palliative care, and a pain doctor wanting to take away all pain medications to see how painful it would be. My head was about to explode.

It takes about 30 minutes for us to drive home from the doctor's office. About 15 minutes into the drive, BR's cell phone rang. It was his neurologist. The pain doctor had called him to discuss BR's case. The neurologist basically laid it out like this: "You can either continue looking for alternate pain therapies that may or may not bring relief, or you can move on to palliative care. I will support either decision."

&$%$%&%^*#@%$^#!@#

When I look at BR, I can see how tired he is of all the pain. It's been over two years and he has only experienced relief a handful of times, most of which ended with him falling asleep for extended periods of time. Now, I'm no sadist. I'd rather he be comfortable and sleep a lot than spend the rest of his life in pain searching for a cure that may not exist at all.

Yet BR has been having a hard time choosing a course of treatment, even after some very helpful discussions with his family over the holidays. So far, he's agreed to have the hospice assessment, which, as I mentioned, took place last week. Well the call came this morning, and they want to start hospice services today. The reality of it all has me winding my butt and scratching my watch, as Truvy would say.

Birthday Week Postcards

2010-01-02T18:54:00.006-06:00

Moet and Mentholatum

Oh! Is there a tequila menu?

Settling in for the flight to Miami.

Over the Gulf of Mexico

Ocean view at sunset

You can't get there from here

Late night dining

Time for bed

Christmas Postcards

2009-12-27T04:06:00.005-06:00

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

2009-12-25T09:48:00.004-06:00

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

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

2009-12-22T00:21:00.003-06:00

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

2009-12-19T18:42:00.003-06:00

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

2009-12-17T21:26:00.002-06:00

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

2009-12-16T01:21:00.004-06:00

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?

2009-12-14T14:06:00.002-06:00

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

2009-12-11T09:58:00.004-06:00

... 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!

2009-12-09T17:39:00.003-06:00

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

2009-12-08T12:57:00.002-06:00

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

2009-12-07T23:16:00.003-06:00

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

2009-12-07T10:50:00.003-06:00

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

2009-12-07T09:00:00.003-06:00

Waiting to be called back

2009-12-07T07:53:00.000-06:00

Prialt trial starts Monday

2009-12-06T00:39:00.006-06:00

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

2009-12-02T02:19:00.005-06:00

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

2009-11-29T02:10:00.006-06:00

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

2009-11-27T04:05:00.002-06:00

BR makes cornbread dressing using the family recipe.

Thanksgiving wishes

2009-11-25T23:22:00.003-06:00

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

2009-11-25T01:53:00.003-06:00

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

2009-11-24T10:45:00.003-06:00

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

2009-11-18T13:18:00.003-06:00

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

2009-11-15T11:44:00.008-06:00

Sacral Bleu!

2009-11-08T03:57:00.005-06:00

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

2009-11-05T22:04:00.005-06:00

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

2009-11-05T02:42:00.003-06:00

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

2009-11-03T15:22:00.003-06:00

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

2009-11-02T00:39:00.006-06:00

"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

2009-11-01T14:31:00.003-06:00

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

2009-10-26T01:46:00.003-05:00

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?

2009-10-22T01:22:00.005-05:00

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?

2009-10-20T09:23:00.003-05:00

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

2009-10-13T19:11:00.004-05:00

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

2009-10-10T03:50:00.006-05:00

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?

2009-10-04T15:10:00.004-05:00

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?

2009-10-01T21:35:00.004-05:00

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

2009-10-01T02:30:00.003-05:00

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

2009-09-29T09:01:00.004-05:00

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

2009-09-21T01:38:00.009-05:00

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!

2009-09-19T16:44:00.000-05:00

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:

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

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

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.

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

2009-09-18T08:08:00.003-05:00

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

2009-09-15T16:26:00.006-05:00

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

2009-09-12T06:30:00.003-05:00

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.