Friday, December 19, 2008

What are you thinking, Mr. President-Elect?

I find myself getting increasingly angry this holiday season. I'm angry that after a year of seeking medical assistance, BR is still in constant pain. I'm angry that Johnson & Johnson has chosen to kill the iBOT. I'm angry that a majority of Californians have chosen to put a "but not for them" amendment into the state constitution.

And now I'm angry that Mr. Obama has selected Rick Warren to deliver the invocation at his inauguration.

For those not familiar with invocations, here's an example delivered by the Reverend Billy Graham at the inauguration of George H. W. Bush.

This invocation starts by recognizing that we are "one nation under God." It also references the president's duty "to preserve, protect and defend the Constitution".

I can't imagine Rick Warren delivering these words with any credibility.

From the Saddleback Church website:
Because membership in a church is an outgrowth of accepting the Lordship and leadership of Jesus in one's life, someone unwilling to repent of their homosexual lifestyle would not be accepted at [sic] a member at Saddleback Church. That does not mean they cannot attend church - we hope they do! God's Word has the power to change our lives.
Does that sound like "one nation under God?" Even if you believe that homosexuality is "an enormous sin", Jesus himself said "Let he who is without sin cast the first stone" as an admission that we are all sinners. To refuse church membership based on this one particular sin seems arbitrary at best, and downright hateful at worst. There are lots of sins listed in the Bible. Pride is one of the seven deadly sins. Yet Reverend Warren's bio page seems to list only things one might be proud of, and nothing that might make him appear to be a sinner. Pretty ironic -- by not disclosing his sins and painting an accurate picture of himself, he has unashamedly committed a sin. Must he now repent his prideful lifestyle, or risk being thrown out of his own church?

And how am I supposed to take him seriously when he talks about the president's obligation to preserve, protect, and defend the Constitution, when Reverend Warren worked tirelessly to remove a right from the California Constitution? Enough said.

Thursday, December 18, 2008

Wednesday, December 17, 2008

The neurologist has given up

BR had another neurologist appointment on Monday. They had the results of the brain MRIs, which showed no change when compared to the MRIs done last March. Yet the reduced cognitive ability, significant weight loss, loss of manual dexterity, and visual distortions are all new symptoms since then. Research seems to indicate that MRIs are a poor indicator for PPMS disease progression, and BR seems to be a classic example.

So what now? The neurologist doesn't feel that any of the disease modifying drugs will be of any benefit. We are just going to treat the symptoms and try to make BR as comfortable as possible. That treatment will include Solu-medrol infusions every 3 months, with the hope of increased strength, weight stabilization, and higher energy levels.

Tori update

The oral surgery went well, and BR is recovering nicely. He wishes he'd had them removed years ago.

3am chicken salad

BR taught me how to make his chicken salad tonight. Unfortunately, we didn't get started until 9:30pm. After letting the flavors marry for a couple hours in the fridge, it makes a great late night snack!

Monday, December 8, 2008

Tori removal; MRI results

Now that the abscess is under control, the oral surgeon says BR's tori have to go. Day surgery is scheduled for Friday morning.

We also got the results from BR's latest MRI. Despite clinical progression, the MRIs show that the number and size of lesions on the brain are stable. This wasn't unexpected, as studies indicate that the later stages of MS are marked by spinal cord atrophy, and not brain lesion activity. We meet with the neurologist on Thursday to discuss next steps.

Tuesday, December 2, 2008

Turning back the attack

The antibiotics are working, and the BR's abscess is getting better. We have an appointment with an Endodontist Wednesday afternoon to try and figure out the cause.

Two lessons learned:

1. Infections really do make MS symptoms worse. Since starting the antibiotics, BR doesn't repeat his sentences nearly as much, and he has better control of his hands.

2. Antibiotics and stool softeners don't mix. Enough said.

Saturday, November 29, 2008

A trying six weeks

I haven't posted in a while, so I'll trying to bring y'all up to date.

We went to see the pain management doctor in early October. Before considering the pump, they wanted to see if Methadone could control BR's pain. That's right. The same stuff used to help heroin addicts get through withdrawal. The methadone experiment was a disaster. About half-way up to his full dose, he started sleeping a lot. There would be times during the day when I was unable to wake him for 4-5 hours, which frightened me a great deal. The pain doctor had also prescribed Adderall to help with the sedation, but once he was out, there was no way to get him to take the speed.

When BR was awake, he was still pretty out of it. He had a very hard time speaking, and his hand/eye coordination was way off (think Ted Stryker's drinking problem in the movie Airplane). But what about the pain? Lowest it had been in months.

During that same month, we were having the house remodeled by replacing carpet with bamboo floors in the bedroom, dining room, and entry, adding a pocket door to make getting into the bedroom easier, making the bathroom sink easier to reach by knocking out a cabinet, and converting the shower stall into a roll-in shower. Charlie, a friend of BR's family who lives near Austin, hooked us up with a contractor, and coordinated the sheetrock work. He also drove me up to Temple to pick up the bamboo flooring, and he spent a couple evenings helping paint the living room. I can't thank him enough.

The day the movers arrived with our belongings from San Francisco, the flooring guy was just finishing up. The house really needed a good cleaning to clear the construction dust, but there wasn't time. We spent the next night in the house after moving all the equipment over from the hotel. But our king sized bed didn't fit in the master bedroom along side the hospital bed, so I slept on an old air mattress we used to take to Mardi Gras in New Orleans. After 10 years of use, it had developed some leaks, and every morning I woke flat on the floor.

We've had many visitors since moving into the house. Cathy came first and helped unpack and organize the kitchen. She also helped us order a queen sized Murphy bed for me to sleep on. Being able to sleep next to BR at night, then fold the bed up to have space to work with him during the day has been a real blessing.

The day before Halloween, we had a follow-up appointment with the neurologist. She felt that the loss of hand/eye coordination and slurred speech could be explained by overshooting with the pain meds. But she was concerned that BR's vision problems were getting worse, and he was having problems swallowing. We were able to weigh BR for the first time since December, and he had lost 40 pounds. She order some blood work, which came back OK, and another set of MRIs.

BR was able to get through the spinal MRI OK, but sleep overcame him during the brain MRI. He has sleep apnea, and the vibrations from his efforts to breath made the brain MRI unreadable. [Reminder to self - you still need to reschedule.]

On Halloween, we had a follow-up appointment with the pain doctor. BR was alert enough to express his displeasure with his current, mostly catatonic state. The decision was made to switch back to the fentanyl patches at a higher dose, and to replace percocet with norco for break-through pain. I was very happy at the prospect of getting BR back, but worried that along with the alertness, the pain would return.

That night, BR's nephew Jay came to stay with him while I traveled to Chicago to visit my mother in the nursing home. She's still very weak, with recurring bowel and bladder infections, but somehow maintains her good spirits. When I got back on Monday, I started falling into a pretty deep depression. BR's mother Dede had relieved Jay as overnight caregiver, and had done some pretty amazing work getting things unpacked and boxes broken down. I think she expected me to join her in finishing up what was still left of the unpacking. I just wasn't able. When depression strikes, only things that have hit critical status get done. The clutter wasn't critical. I love her dearly, and can't wait to see her again next month.

For the first half of November, I struggled with depression. BR was coming off the methadone and onto the patches, and as I had feared, pain accompanied alertness. BR's daytime caregiver, Josue, would arrive at noon each weekday to allow me some time to focus on work. I have a home office upstairs to which I would retreat until 6pm when Josue's day ended. In the evenings BR and I would sit on the front porch having a drink and talking with the neighbors.

The week of the 17th, I made a trip back to Palo Alto, California to maintain ties with my coworkers. The week before, BR's pain had become severe enough to call the pain doctor for help. We weren't able to schedule an appointment before I left, so I called an audible and upped BR's patch dosage to 200 mcg/hr. Pain level dropped, but so did alertness.

Our friend Nancy from Dallas payed us a nice visit the weekend before my California trip -- she helped me pick out a bed for the guest room, and afterwards we enjoyed a short motorcycle ride through the hill country. After she left, we welcomed Karen Williams, who drove all the way from Metairie, Louisiana to stay with BR while I was out of town. I gave her the rundown on the evening routine, and assured her that Josue would take care of the morning routine. And with that, I was on a 7am flight.

California was great. I saw some friends, renewed ties with coworkers, and fixed a critical problem that was holding up a release. I also continued to try to get BR in to see the pain doctor. We finally got an appointment for Wednesday afternoon, and I had Karen conference me in with BR's cell phone. The PA offered to increase the patch dose, and I told him I already did that. I had had enough with medications that either left BR in pain, or me alone with a zombie. So I suggested that it was time to consider the pump implant. The PA agreed and informed us that the approval process could take 4-6 weeks. In the mean time, BR's fentanyl was increased to 250 mcg/hr.

When I got back from California, I was feeling pretty good and ready to make a run at the holidays. I received an e-mail from our friend Rene, who I had seen while in California. She had booked a flight to Austin, and wanted to spend some time with us. We arranged for her to spend the night Wednesday and stay for Thanksgiving dinner.

She called around noon on Wednesday, and offered to pick up lunch. BR was not having a good day and requested a fruit salad, while the rest of us got burgers. Rene was delivered to our house by her friend who is also named Rene, so I'll call her Rene from Bastrop. When they arrived around 3pm, BR was still in the midst of his morning routine with Josue, so the rest of us ate our burgers, then went for a walk through the neighborhood. Rene from Basrop had the most adorable son named Colton. He was about 1.5 years old, and after some initial hesitancy, we bonded. The boy had an insatiable curiosity. Every plane that flew by (we are in the landing path for Bergstrom Airport) captured his attention. Flocks of birds were chase-worthy. And tickle fights left no hard feelings.

BR made a brief appearance that evening, but was never fully with it. He peaked when I informed him that I had not yet ordered the Fried Turkey from Popeyes. I got him the phone and he made arrangements to have one ready for pickup at noon on Thanksgiving. He then retired to bed so that Rene and I could go out to shop for the rest of the Thanksgiving dinner supplies.

Oh and some marketing advice to HEB: when someone purchases more than $100 worth of groceries, don't print in big letters on the receipt "You saved $1.15". It's insulting and just proves that you take advantage of folks during the Thanksgiving holiday.

After putting away the groceries, I got BR back into his chair, and the three of us played Wii bowling. Well, Rene and I played, while BR watched. He mentioned some tooth pain, and when I looked in his mouth, his gums were all swollen around the lower right second molar. I gave him a norco and we all retired for the evening.

Thanksgiving day started off well. I picked up the turkey, then Rene and I cooked the rest of the menu under BR's watchful eye. But I could tell something wasn't right. BR was getting frustrated that he couldn't do the cooking like he always used to. As we were eating, I asked BR about his plans for making the traditional turkey gumbo. He repeated his response five times without any awareness that he was doing so. Rene and I looked at each other, then attempted to move the conversation along. The repeating continued for another minute before he snapped out of it. That was weird.

BR was asleep in his chair when it was time to take Rene back out to Bastrop. Instead of putting him to bed, I loaded him in to the minivan and brought him along on the chance that he might wake up. He slept the entire way, but woke up long enough to say hello to Rene from Bastrop and Colton once we arrived. He was pretty alert for the ride home, and we played Wii bowling and golf for a few hours before bed. I was surprised and frustrated at how much trouble he was having using the controller. His fingers were in a constant curl and very difficult to open. He couldn't tell if he was touching the 'B' trigger button or not. But he understood and enjoyed the games, and for that I am thankful.

As we were getting ready for bed, he told me that the pain in his mouth was getting worse, and he didn't think he could make it through the weekend. I promised to look for an emergency dentist if the pain was still there in the morning.

It was.

Friday morning, I called 1-800-DENTIST and got a referral to Dr. Schmidt, who does afterhours work for $160 cash. He returned the page right away, but couldn't see BR until the next morning. I kept BR as comfortable as possible with norco and protein shakes, and kept myself busy with laundry. We watched the awful LSU football game. Conversation was difficult as BR was still repeating sentences. Bedtime couldn't come too soon.

I brought BR to the dentist this morning, where Dr. Schmidt drained an abscess, but was not able to identify the cause even after an x-ray. He prescribed a 10 day suite of antibiotics and referred us to a specialist. At the drug store, I had to drive BR's wheelchair for him. He was having a really hard time comprehending his surroundings, and was starting to get combative. By calmly explaining what was going on as many times as he asked, I was able to keep his trust.

We are home now, and after taking the antibiotic, he has been sleeping for the last 4 hours. Today is the day to change his patches, but I'm afraid of any additional sedation.

And yet, I know that someday in the not too distant future, I will look back and wish for today.

Wednesday, October 8, 2008

State Fair of Texas

BR, Steve, Cathy, and Todd spend an evening at the State Fair.

Wednesday, October 1, 2008

BR's medical team is coming together

[post edited to remove doctor's names]

Yesterday, we met with BR's new neurologist. With over 1400 MS patients, he is considered the local expert on MS treatment.

We liked him right away. He spent a good deal of time with us, getting to know BR's history and current symptoms. BR is his only patient experimenting with Rituxan, so if we do decide the treatment is working, we will likely need to travel to Dallas (or back to UCSF) for subsequent infusions. We'll see the neuro again in another month to assess the effectiveness.

Additionally, he referred us to a pain management specialist. BR's pain has been trending up with all the stresses of the move, and the oral medications are leaving him sleepy, dopey, and the lesser known dwarf, constipated. The first pain management doctor we called had a very insensitive intake team. They didn't seem very concerned with BR's quality of life.

So the neuro referred us to another pain doctor, and recommended that we consider an "Intrathecal Pump Implant" to supply pain medication directly to the spinal cord. Though it should be safe, it's a pretty big step. I'm wondering if BR's suppressed immune system from the Rituxan will keep him from having such a procedure.

Saturday, September 20, 2008


My first day in the VMware Austin office was September 8th. As I was walking into the building, something caught my eye. The Lone Star Chapter of the National MS Society have their offices on the first floor of the same building. With a big grin, I walked in and introduced myself.

They provided us with some information on home modification and local support groups. I also picked up a copy of "Caring for Loved Ones with Advanced MS: A Guide for Families". I'll post a review shortly.

Monday, September 15, 2008

We bought a house!

It was one of the last available homes in Phase I of the Mueller Redevelopment. Built with the "Willie" floorplan by David Weekley Homes. Join us on a walkthrough.

Jet Powered Concept Wheelchair

We use AllegroMedical for our mail-order supplies, and noticed this little item on their home page. At $387,568, it's a bit pricey.

Palin-Clinton on SNL

In case you missed it, here's the link to the Palin-Clinton opening on SNL.

Monday, September 1, 2008

BR at the Human Race Austin

Steve and BR went to check out downtown on our first weekend in Austin, and came upon the Human Race.  We took some time to cheer on the thousands of runners.

Thursday, August 14, 2008

Now a warning?

BR had his second Rituxan infusion this past Monday, and tolerated it very well. Now the waiting begins.

Before the first infusion, his neurologist expressed concern over one of his blood test results. It appears that BR had been exposed to Hepatitis B, and his body was able to successfully fight it off. But fighting off Hep B doesn't mean eliminating it. Many people carry the dormant virus with no ill effects.

That is until they take Rituxan.

We saw a GI doctor on Wednesday, and she has prescribed a six month suite of an antiviral drug called Lamivudine, just to make sure the Hep B doesn't come back. More pills. More side effects to watch for.

In other news, our move to Austin is still on schedule. The movers come on Wednesday, August 27, and our flight is on the 28th.

Saturday, August 9, 2008

Meatloaf Night

Gail and David stopped by last Wednesday for BR's world famous Meatloaf Night.

Wednesday, July 30, 2008

Congratulations, Karen!

My sister, Karen, was diagnosed with breast cancer last year.  After surgery, chemo, and radiation, she is well on the road to recovery, thank God.

So what does she do to celebrate?  Throw a charity event, of course.  Last Saturday was the 2008 Belvidere Historic Home Fun Run/Walk.  Initial reports are that the event raised upwards of $9000 with 150 participants.  Way to go, Karen!  Will you get some rest, now?

Mom is doing much better

For those of you who don't know, my mother was hospitalized in early April with an infected cyst on her groin. While in the hospital, the infection spread rapidly, and required major surgury and antibiotics to bring under control. Her recovery has been a slow process -- some of the wounds have still not healed.

Mom was released from the nursing facility on July 8th. Having recently been through a similar experience with BR, I flew home to offer what assistance I could to my Dad and sisters. Mom was pretty weak, and had trouble getting up from a seated position. We got the house arranged to be as comfortable as possible, interviewed caregivers to help when the kids couldn't be around, and marveled at how calmly Mom was taking her new physical limitations.

As I flew back to SF, I prayed that Mom and Dad would continue to find the strength. For the caregiver that was necessarily invading their space. For us kids, whose personal issues (we should write a book) got a big dose of perspective.

I also felt some guilt for not being more available to help out. Thank goodness for internet medical supply stores! But most of all, I felt pride in how we pulled together as a family and did what was necessary for our Mother.

When I spoke to Mom last Friday, she was in good spirits. With the help of a physical therapist, she had climbed the stairs to the second floor, and sat on her own bed for the first time in over three months. I can close my eyes and see the smile on her face.

Tuesday, July 29, 2008

Soul crushingly painful decisions

BR and I arrived in San Francisco in June of 2004. Even before we arrived, this city threw its arms around us and made us feel more welcome than we could have ever imagined. That's because in February 2004, BR and I joined the thousands of other couples in claiming the legal rights and obligations that most take for granted ... the right to marry the one you love.

Turns out, that document wasn't worth the paper it was printed on, but it set the tone for the next four years. A spouse keeps you grounded in the face of unimaginable bounty (fleeting as it was). He keeps you going when bed feels like the only safe place. And he makes you understand that not all things are under your control

So once again we are offering our fate to a higher power, and taking steps to prepare for whichever way Fortuna's wheel spins us.

In other words, we are moving to Austin at the end of August. Here are the highlights of the current plan (subject to change without notice):
  • My boss is graciously allowing me to keep my Staff Engineer position at VMware. I will be working remotely from VMware's Austin office starting September 8th.
  • Once we arrive in Austin, BR and I will be living in an extended stay hotel for at least a month while we look for suitable housing. I know it sounds crazy, but it turns out to be break even compared to our current living expenses. We'll put all our stuff in storage and are open to offers on the furniture. $-)
  • We have already identified a primary care doctor for BR, and have an appointment for the first week of September. It shouldn't take long to fill out his medical team with an afternoon caregiver, an in-home nursing service to regularly change his suprapubic cystostomy tube, and a neurologist to monitor the MS progression.

We have come to love San Francisco -- evenings sitting on the stoop chatting with neighbors, Broadway shows -- we saw Tuna Does Vegas last month, and most of all the cool friends and cool temperatures that seem to help with BR's pain.

So Austin, you'd better have a Margarita waiting on us at the airport. We'll forgive you if you won't marry us, if you'll forgive us for leaving our heart with another city.

Monday, July 28, 2008

BR starts Rituxan treatment

It's been a very eventful day. BR received his first infusion of Rituxan. Hear about it directly from him by clicking the play button on his big mouth.

Rituxan is approved to treat cancer and arthritis, but not MS. However, there have been studies that seem to indicate that it can stop MS progression and give the body a chance to heal.