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.
Thursday, November 5, 2009
Tuesday, November 3, 2009
Tough situation and tough decisions
With BR heavily sedated all the time, I'm falling into a terrible funk. I second guess all my decisions.
Is it time to call the doctor? I've decided yes on this one. I'm told I can call in the morning and get a same day appointment with his primary care physician.
Am I doing enough to avoid pressure wounds? I'm turning him every 3-4 hours during the day, and once overnight, and the process is excruciatingly painful for him. He has one sore on his tailbone that is holding steady at stage 1, down from stage 2 when he was having all the bladder issues.
He gets up for a few hours in the evening, but communication is slow. Often he'll just fall asleep in his chair.
Should I be checking him into a care facility until the Prialt trial in December? I hope the doctor has some advice for me tomorrow.
Should I be going to California next week? Jordan is coming back to care for him, but this isn't the same situation it was over the summer.
I'm trying to stay calm and seek advice from professionals as needed. But when I don't feel what he's feeling, when he has a disease that ends up being the root of so many problems that don't seem to be responding to treatment, it all just seems so futile. I fear we are on a crash course with the ER, and we both *hate* the ER.
Maybe the doctor tomorrow will be the "stitch in time" that I'm looking for.
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.
Monday, November 2, 2009
Halloween
"Those damn Halloween pranksters."
"Wearing her heart on her cheek."
"You're not fooling anyone with that halo."
"Pardon me, Princess."
"Chicken meets Monkey. Film at 11."
"Don't encourage her."
Sunday, November 1, 2009
Hurry up and wait
Happy All Saints Day, y'all.
BR and I were expecting to be on our way back to Houston at this time. We were e-mailing (!) with the doctor last week, and he said he was available for the Prialt trial either the week of November 2nd, or the week of December 7th. Not wanting to wait whole month, we pushed for next week, and everything was looking good until noon on Friday, when the business office called and said they hadn't received insurance approval yet.
I called and left a message for our case manager at Blue Cross, and she called back to let us know that BR needed to have a psych evaluation before the trial could be authorized. Luckily, he had already done one for the Which doctor -- we just needed to get the paperwork to the right people. I left a couple messages with the Which doctor's office, and when I hadn't received a response by 4pm, I drove 30 minutes and sat in the waiting room until I could get confirmation that they had faxed the report over to M.D. Anderson. But I knew that we were already too late. There just wasn't enough time for the report to be reviewed by Blue Cross before the M.D. Anderson business office closed for the weekend.
It really is a shame. BR's pain is worse than ever. He has agreed to let me keep him pretty doped up so he can tolerate it. He's sleeping a lot and needs supervision when he's awake.
The countdown has started until December 7th.
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.
Monday, October 26, 2009
Blessings when things go wrong
The van was our last working form of transportation. My motorcycle had a dead battery, and my bicycle had two flat tires. I had been meaning to get both working for quite a while, but just never did it. The loss of the van meant the complete loss of wheels -- something that was unacceptable.
We spent Wednesday night together in my bed, which is a queen sized Murphy Bed. I placed BR's alternating pressure pad on one half of the bed under the mattress pad, and layered the fitted sheet, waterproof pad, and draw sheet on top. Then I arranged his pillows (he has six) such that he would lie on a slight incline with his feet elevated. After placing him in bed, I moved his trapeze over him, which provided a side rail as well, and moved the hospital table behind the trapeze stand for his water and other nighttime needs.
And then we snuggled for the first time in over a year. Mmmmm.
The next day, I rented a 26' U-Haul to go pick up BR's wheelchair and bed. It was much larger that I needed, but it was the only van available that had a ramp wide enough to accommodate the iBOT. After a successful retrieval, I started thinking about how to get the motorcycle working again before 9am the next morning, when the van was due back. I would need to throw the bicycle into the van for the ride home, get a tire pump for a presto valve to inflate the bicycle tires, and get a motorcycle battery. The pump was easy -- Target opens at 8am. The battery was a bit more difficult. There was a power equipment place that opened at 8am as well, and it carried batteries. Starting at 7:45am, I picked up the pump, then headed for the battery. When I pulled into the parking lot, there were no spaces that would accommodate a 26' van, so I decided to pull across several spaces just past the store's street sign. What I didn't realize was that the sign was only 10 feet off the ground, and the U-Haul had a 12 foot clearance. Guess who's buying a new sign for the store?
With the battery in hand, I refueled the van, being hyper aware of the overhead clearance at the pump. I returned the van, pumped up the bicycle tires, and headed back home with the battery. Two down, one to go.
The mechanic friend turned out to be honest, trustworthy, and talented. Not only did he fix the van's engine (broken valve spring), he also changed the oil, fixed the driver's side window, the passenger door, and the electrical problem that was draining the battery if the van wasn't used for two or more days. When I called for updates, he always answered the phone, and would tell me about the leg work he was doing. And he did all this for a price far less than any dealer would have charged.
Cathy and Todd came down from Dallas for a visit this weekend, so Todd was able to take me out to pick up the van on Sunday. She purrs like a kitten.
Some may see this whole experience as an expensive twist of fate. I view the two nights BR and I shared a bed as worth the price.
We spent Wednesday night together in my bed, which is a queen sized Murphy Bed. I placed BR's alternating pressure pad on one half of the bed under the mattress pad, and layered the fitted sheet, waterproof pad, and draw sheet on top. Then I arranged his pillows (he has six) such that he would lie on a slight incline with his feet elevated. After placing him in bed, I moved his trapeze over him, which provided a side rail as well, and moved the hospital table behind the trapeze stand for his water and other nighttime needs.
And then we snuggled for the first time in over a year. Mmmmm.
The next day, I rented a 26' U-Haul to go pick up BR's wheelchair and bed. It was much larger that I needed, but it was the only van available that had a ramp wide enough to accommodate the iBOT. After a successful retrieval, I started thinking about how to get the motorcycle working again before 9am the next morning, when the van was due back. I would need to throw the bicycle into the van for the ride home, get a tire pump for a presto valve to inflate the bicycle tires, and get a motorcycle battery. The pump was easy -- Target opens at 8am. The battery was a bit more difficult. There was a power equipment place that opened at 8am as well, and it carried batteries. Starting at 7:45am, I picked up the pump, then headed for the battery. When I pulled into the parking lot, there were no spaces that would accommodate a 26' van, so I decided to pull across several spaces just past the store's street sign. What I didn't realize was that the sign was only 10 feet off the ground, and the U-Haul had a 12 foot clearance. Guess who's buying a new sign for the store?
With the battery in hand, I refueled the van, being hyper aware of the overhead clearance at the pump. I returned the van, pumped up the bicycle tires, and headed back home with the battery. Two down, one to go.
The mechanic friend turned out to be honest, trustworthy, and talented. Not only did he fix the van's engine (broken valve spring), he also changed the oil, fixed the driver's side window, the passenger door, and the electrical problem that was draining the battery if the van wasn't used for two or more days. When I called for updates, he always answered the phone, and would tell me about the leg work he was doing. And he did all this for a price far less than any dealer would have charged.
Cathy and Todd came down from Dallas for a visit this weekend, so Todd was able to take me out to pick up the van on Sunday. She purrs like a kitten.
Some may see this whole experience as an expensive twist of fate. I view the two nights BR and I shared a bed as worth the price.
Thursday, October 22, 2009
Dude, where's my car?
Whoa. What the hell just happened?
One minute we are driving back from Houston, discussing how wonderful the doctor at M.D. Anderson was. He spent at least 45 minutes with us, and explaining how Prialt works, listening to our concerns, and being honest about the chances of success. He let us know that between 60 and 70 percent of people who try Prialt find the "sweet spot" where pain is relieved, and the nasty side effects don't take hold. He tells us to expect to spend a week in Houston while the proper dosage is tuned in through experimentation.
The remaining 30 to 40 percent are unable to achieve pain relief without the drug affecting their memory and ability to reason. He assured us that in this unlikely event, the side effects will go away completely within three hours of stopping the medication.
Given BR's history of failure with exotic pain treatments, we took time to discuss our options should Prialt follow suit. Unlike the Which Doctor, this doctor was not afraid to discuss how intractable pain crosses into palliative care, and finally into hospice. He felt that BR would best be served by a local palliative care doctor instead of a pain management doctor, and they will be providing a referral.
Ding! Dong! The Which is dead.
After a couple celebratory drinks at a Houston watering hole, we started making our way back to Austin. About 45 miles from home, I felt a strong vibration from the van. Thinking it was just rough pavement, I changed lanes, but the vibration persisted. Then the "check engine" light started flashing and we started losing power. Crap.
Now when BR and I travel, we are a lot like the Beverly Hillbillies. The van is packed with an entire hospital bed complete with mattress and rails, a shower chair, BR in his iBOT, a cooler, and a couple large suitcases. The van breaking down just completes the picture.
We rolled into a small convenience store on the edge of nowhere, where the clerk was quick to join me under the hood looking for the source of the problem. Nothing obvious was out of place, but I knew we weren't going to make it the final 45 miles. The clerk offered to call a friend, who just happened to have a garage right across the street. The mechanic friend was working late and agreed to take a look.
The diagnostic computer said that "the MAP readings were not changing from start to run" and that "cylinder 4 was misfiring". The friend changed the spark plug on cylinder 4, but it didn't help. We were stuck.
I thought through our options. How was I going to get BR and all our stuff home? Wheelchair minivan taxis are difficult to come by in downtown Austin, much less the edge of nowhere. It became obvious that the iBOT would not be leaving with us.
Once that decision was made, I called the neighbors from across the street, and they agreed to come fetch us in their SUV. During the 45 minutes it took for them to arrive, I realized that BR's hospital bed would also be spending the night at the edge of nowhere. The only piece of equipment that joined us was the shower chair.
So as BR sits in his shower chair in the living room, completely unable to do anything for himself, I'm working on the plan to retrieve the bed and iBOT in the morning. The mechanic friend will be digging further into the engine problems, but BR's independence and comfort can't wait for a repair. In the mean time, we will be sharing a bed tonight for the first time since we moved to Austin.
One minute we are driving back from Houston, discussing how wonderful the doctor at M.D. Anderson was. He spent at least 45 minutes with us, and explaining how Prialt works, listening to our concerns, and being honest about the chances of success. He let us know that between 60 and 70 percent of people who try Prialt find the "sweet spot" where pain is relieved, and the nasty side effects don't take hold. He tells us to expect to spend a week in Houston while the proper dosage is tuned in through experimentation.
The remaining 30 to 40 percent are unable to achieve pain relief without the drug affecting their memory and ability to reason. He assured us that in this unlikely event, the side effects will go away completely within three hours of stopping the medication.
Given BR's history of failure with exotic pain treatments, we took time to discuss our options should Prialt follow suit. Unlike the Which Doctor, this doctor was not afraid to discuss how intractable pain crosses into palliative care, and finally into hospice. He felt that BR would best be served by a local palliative care doctor instead of a pain management doctor, and they will be providing a referral.
Ding! Dong! The Which is dead.
After a couple celebratory drinks at a Houston watering hole, we started making our way back to Austin. About 45 miles from home, I felt a strong vibration from the van. Thinking it was just rough pavement, I changed lanes, but the vibration persisted. Then the "check engine" light started flashing and we started losing power. Crap.
Now when BR and I travel, we are a lot like the Beverly Hillbillies. The van is packed with an entire hospital bed complete with mattress and rails, a shower chair, BR in his iBOT, a cooler, and a couple large suitcases. The van breaking down just completes the picture.
We rolled into a small convenience store on the edge of nowhere, where the clerk was quick to join me under the hood looking for the source of the problem. Nothing obvious was out of place, but I knew we weren't going to make it the final 45 miles. The clerk offered to call a friend, who just happened to have a garage right across the street. The mechanic friend was working late and agreed to take a look.
The diagnostic computer said that "the MAP readings were not changing from start to run" and that "cylinder 4 was misfiring". The friend changed the spark plug on cylinder 4, but it didn't help. We were stuck.
I thought through our options. How was I going to get BR and all our stuff home? Wheelchair minivan taxis are difficult to come by in downtown Austin, much less the edge of nowhere. It became obvious that the iBOT would not be leaving with us.
Once that decision was made, I called the neighbors from across the street, and they agreed to come fetch us in their SUV. During the 45 minutes it took for them to arrive, I realized that BR's hospital bed would also be spending the night at the edge of nowhere. The only piece of equipment that joined us was the shower chair.
So as BR sits in his shower chair in the living room, completely unable to do anything for himself, I'm working on the plan to retrieve the bed and iBOT in the morning. The mechanic friend will be digging further into the engine problems, but BR's independence and comfort can't wait for a repair. In the mean time, we will be sharing a bed tonight for the first time since we moved to Austin.
Tuesday, October 20, 2009
What do cancer and MS have in common?
Chronic pain.
We're heading to Houston for that appointment at the M.D. Anderson Cancer Center. The whole prospect of another doctor offering other worldly treatments with unknown chances of working has just got me down. Shots in the dark are expensive, unproductive, and take their toll on our emotions.
Our experience with the Which Doctor has been frustrating and depressing. He has maintained BR on increasingly potent opioids, without which BR's pain would be unbearable. All the while, he sequentially offers invasive treatments which seem to line his pocket without providing BR any relief.
It's time for some new blood on this symptom, which is why we've agreed to travel the 165 miles to Houston for a consultation. The drive alone will be torture for BR. Our hope is the doctor there will have a bit more compassion for a patient like BR. Maybe he will understand the toll chronic pain takes on every aspect of the patient's life. Maybe he will realize that experimentation, though necessary, comes at a cost to the patient, both financially and emotionally. And maybe, just maybe, he'll be a human, and not just a doctor.
If he has nothing to offer as treatment, that will be fine. If he has anything to offer about how to know when it's time for hospice, that will be better. When is the pain too much? In a particularly bad moment last week, BR wondered if Jesus had already come for him, and he didn't go.
We're heading to Houston for that appointment at the M.D. Anderson Cancer Center. The whole prospect of another doctor offering other worldly treatments with unknown chances of working has just got me down. Shots in the dark are expensive, unproductive, and take their toll on our emotions.
Our experience with the Which Doctor has been frustrating and depressing. He has maintained BR on increasingly potent opioids, without which BR's pain would be unbearable. All the while, he sequentially offers invasive treatments which seem to line his pocket without providing BR any relief.
It's time for some new blood on this symptom, which is why we've agreed to travel the 165 miles to Houston for a consultation. The drive alone will be torture for BR. Our hope is the doctor there will have a bit more compassion for a patient like BR. Maybe he will understand the toll chronic pain takes on every aspect of the patient's life. Maybe he will realize that experimentation, though necessary, comes at a cost to the patient, both financially and emotionally. And maybe, just maybe, he'll be a human, and not just a doctor.
If he has nothing to offer as treatment, that will be fine. If he has anything to offer about how to know when it's time for hospice, that will be better. When is the pain too much? In a particularly bad moment last week, BR wondered if Jesus had already come for him, and he didn't go.
Tuesday, October 13, 2009
Summer 2009 at Mueller, Austin
I took a little time this weekend to put together a little clip video of some of the things we did this past summer. It wasn't all urine and pain. :-)
Saturday, October 10, 2009
17 years and counting
We had been dating for two years, and living together for one. We got engaged in the parking lot of the San Jose, California airport. While riding out Hurricane Andrew on Key West, we decided to set the date -- 10/10/1992. While looking through a AAA magazine, we read an article about Skyline Drive through the Shenandoah National Park. It mentioned a small waterfall right off the road, and we chose it as the location for our wedding.
We set out from Dallas, Texas on the 8th, driving to Memphis, Tennessee on the first day. On the second day, we made it to Roanoke, Virginia. We set off on the morning of the 10th, located the falls, and started to climb. When we reached the top, we exchanged vows and rings between ourselves and our God.
Goodness, we were young!
We set out from Dallas, Texas on the 8th, driving to Memphis, Tennessee on the first day. On the second day, we made it to Roanoke, Virginia. We set off on the morning of the 10th, located the falls, and started to climb. When we reached the top, we exchanged vows and rings between ourselves and our God.
Goodness, we were young!
Sunday, October 4, 2009
Coude it be magic?
Our regular home nurse was out sick on Friday, so a replacement nurse came by yesterday to switch BR over to the coude catheter. I gave him the history of BR's issues with catheters, and described how the coude catheter should be inserted, just as it was described to me by the Mad Urologist. After a short prayer, BR removed the old catheter, William inserted the coude catheter while I held it in the correct orientation, and the balloon was inflated.
"BR, how does it feel?"
"That was easier than I was expecting. Best change in a long time."
About 20 minutes later, the flow started. Nothing but catheter!
24 hours later and we are about to ditch the Depend undergarments.
"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?
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