Amsterdam Centraal train station seen from hotel room
Richie in the kitchen
Herrad out of bed!
Beautiful couple and Steve
Mmmm... Fritessaus
Showing posts with label food. Show all posts
Showing posts with label food. Show all posts
Friday, May 14, 2010
Amsterdam Postcards
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
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
Thursday, May 6, 2010
Riding the grief roller coaster
It started out with tears of joy. BR and I finally found a way to take away his pain that worked.
The week that followed was full of family and friends. Laughter through tears. I told Jordan she was welcome to stay, and we would work out the details later. She's now putting down roots, buying a scooter and looking for a job nearby. I'm glad for the continued company, but I worry that I'm being a big downer. There are times in the afternoon when I need to go to my room, close the door, and pretend to sleep. Sleep actually found me today, and I'm grateful for that.
Then there are times when I become exceptionally productive. Bought a new battery for the minivan and had the electrical system repaired. Had both mine and my neighbor's sprinkler system repaired. (I mowed over one of her tree bubblers.) Started an inventory of the leftover medical supplies. Looks like I'll have to donate them to a charity that sends them overseas due to US and Texas law.
And then I'll go to make dinner. "What do you... hmm. What do I want?" I have to admit, there is more cheese in the fridge than ever before.
The feelings I have right now are similar to those I had when I spent my junior year in college studying abroad in Paris. I was alone, with limited contact to my familiar support system. The difference is that now, BR is gone. Back then, I still had one more year of school back home. It hurt like hell, but I became a better person for it.
Even disabled, BR was the glue that held so many parts of my life together. Now that he's gone, I feel like I have to do it all myself. But I can't. That's the whole point of marriage -- two people coming together through love to do more than either one could do on their own. So right now, I'm focusing on the immediate. The bills are on autopilot. The people I see get first shot at a smile. Everything else may have to wait.
In this big-ass world, though, there are people important to me who were unable to attend the memorial service. So I've booked some travel to see them. First up is KimmieG and her husband Mike in Wisconsin. She was my one and only girlfriend in high school, and no matter how far apart we are, we will always be connected. Then I'll head to Chicago to see Joy. I met Joy while participating in the first Texas AIDS Ride -- a 7 day bicycle ride from Austin through Houston to Dallas. A similar bond formed. Next, I'll spend Mother's Day and the day after with my parents in Belvidere, Illinois. From all accounts, Mama is doing really well since being discharged from the nursing home.
From there, I'll be hopping a flight to Boston with a connection to Paris, followed by a train to Amsterdam. After some sleep, I'll be meeting Herrad and Richie for the first time in the flesh, and letting them know what their online friendship has meant to both BR and me. They are the only other couple we'd discovered who have lived through the same rapid progression of MS. Just knowing that we were not alone made all the difference during the difficult times.
Upon returning to Paris, I plan to sit by the Seine in the early morning, reading a book and conversing casually with passers by.
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.
Thursday, April 8, 2010
2010 Birthday Guilty Pleasure #11: Artisanal Chocolates
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.
Thursday, December 17, 2009
Wholesome Helper
It's like Hamburger Helper, only wholesome.
I don't know why he's reading the box. He never follows the directions. Yet deliciousness is guaranteed to ensue.
Sunday, November 29, 2009
The McDonald's exercise program
I'm getting fat. Clothes that used to hang on me are now tighter than a sausage casing. I've always lived with a rough understanding that change in waist size is proportional to daily caloric intake minus calories burned by resting rate of metabolism minus calories burned through exercise. As I age, my rate of metabolism is slowing. So if I want to continue to fit in my clothes, I need to watch what I eat (diet), put on muscle mass to maintain my metabolism (weight training), and/or get my fat ass off the couch for a few hours each day (cardiovascular exercise).
I've never been a big fan of dieting. I like food, and food likes me. But lately I've noticed that I've been eating as an avoidance behavior. If there is something I don't want to do, I'll use meal/snack preparation and consumption as a way to put it off. Working from home amplifies this tendency.
In my twenties, I would regularly lift weights at the gym at work as a way of breaking up the day. When we moved to San Francisco, I joined a gym in the city, but only used it once a year on average. Now, my only weight bearing exercise is lifting BR when transferring him between his bed and chair.
I've never been an enthusiastic player of team sports, preferring cycling instead for heart pumping, fresh air gulping exploration of roads less traveled. I used to ride in multi-day charity events, and loved many aspects of the way I felt after a day in the saddle. These days, my worsening allergies have taken the excuse lead for why the bicycle sits in the garage collecting dust.
It's a perfect storm. A slippery slope of bad behaviors reinforced by a litany of excuses. Well I'm putting the excuses away for the holidays, and am putting some personal focus on my ample yet adorable waistline. If there is one thing I hate more than diet and exercise, it is clothes shopping.
One of my initial motivators will be the Lights of Love 5k charity run taking place in our neighborhood this coming Friday. I have no intention of running the distance, and instead will speed walk alongside BR as he opens up the throttle on his wheelchair. The event benefits the local Ronald McDonald House, which provides housing next to the children's hospital for families of the critically ill who are far from home. I just love the irony of kicking off my body shaping efforts at a McDonald's sponsored event.
If you would like to sponsor BR and me, the Public Service Announcement above has a link to the donation page. You'll be supporting a great organization.
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.
Wednesday, November 25, 2009
Thanksgiving wishes
I was reading Patrick's post on how Thanksgiving has marked so many changes in his family, and it really struck a chord. It was two years ago just before Thanksgiving that I wheeled BR into San Francisco's Davies ER with a neurogenic bladder. That stay, and the subsequent bout with sepsis lasted almost a month.
Then last year, BR had an abscess in his mouth caused by tori. His bite hasn't been the same since they were removed, making mealtimes an extended event.
This year, a sacral insufficiency fracture heralded the holidays. Talk about ouch on ouch.
Yet still, we are in the kitchen making our favorite Thanksgiving foods. BR is on the phone getting the recipe for cornbread stuffing from his Mama. (You didn't really think those White Castles would last until Thanksgiving, did you?) I've made the broccoli cheese casserole. The turkey is thawed and ready for the morning roast. Add green beans stir-fried in bacon fat, roasted pecans, and brown-and-serve rolls, and we have everything to make Thanksgiving special. Except family.
No matter where you are. No matter what you are doing. No matter how you feel about yourself. You are loved and missed.
Then last year, BR had an abscess in his mouth caused by tori. His bite hasn't been the same since they were removed, making mealtimes an extended event.
This year, a sacral insufficiency fracture heralded the holidays. Talk about ouch on ouch.
Yet still, we are in the kitchen making our favorite Thanksgiving foods. BR is on the phone getting the recipe for cornbread stuffing from his Mama. (You didn't really think those White Castles would last until Thanksgiving, did you?) I've made the broccoli cheese casserole. The turkey is thawed and ready for the morning roast. Add green beans stir-fried in bacon fat, roasted pecans, and brown-and-serve rolls, and we have everything to make Thanksgiving special. Except family.
No matter where you are. No matter what you are doing. No matter how you feel about yourself. You are loved and missed.
Thanksgiving Guilty Pleasure: White Castle Stuffing
OK. I've never tried it. But I do love White Castle hamburgers. My sister Karen and her husband Pete sent 16 burgers on dry ice from Illinois last week for our enjoyment (there aren't any White Castle's in Austin). Mmmmm.
So here's the recipe, which is copied from White Castle Shares Turkey Stuffing Recipe:
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.
Sunday, November 15, 2009
Thursday, August 27, 2009
The only constant is change
We have had 65 days of temperatures over 100 degrees Fahrenheit (38 degrees Celsius), and today will make 66. I'd forgotten how ferociously cabin fever strikes during these slow, hot Texas summer months. Just like in winter, we move quickly from the house to the van, from the van to the office/store/restaurant. And we move just as quickly on the return side.
Jordan went back to Illinois just over a week ago, after spending eight weeks as BR's live-in caregiver. It wasn't always smooth, but we did finally find a groove, and enjoyed her company. Jordan spent most days up in her room, which couldn't have been easy given that the A/C was not able to keep up with the heat and temperatures would reach 80-85 degrees each day. Great for beach. Not so good for bed.
We had a neurologist appointment on Monday. We really had only one expectation going in. Both BR and I were sure that he had gained some weight since his last sit on the scale four months ago. To our dismay, he's lost seven pounds. In four months.
131 pounds divided by 1.75 pounds lost per month leaves 75 months until 0.
Tonight was meatloaf night, with salad and heavy honey mustard dressing, black-eyed peas, and homemade peach ice cream for dessert.
The neurologist put BR on a more sustained schedule of steroids. Instead of three grams of prednisone every three months, he's taking one gram every four weeks. The difference in his energy levels, appetite, and comprehension is amazing. Please, no whammies!
Jordan went back to Illinois just over a week ago, after spending eight weeks as BR's live-in caregiver. It wasn't always smooth, but we did finally find a groove, and enjoyed her company. Jordan spent most days up in her room, which couldn't have been easy given that the A/C was not able to keep up with the heat and temperatures would reach 80-85 degrees each day. Great for beach. Not so good for bed.
We had a neurologist appointment on Monday. We really had only one expectation going in. Both BR and I were sure that he had gained some weight since his last sit on the scale four months ago. To our dismay, he's lost seven pounds. In four months.
131 pounds divided by 1.75 pounds lost per month leaves 75 months until 0.
Tonight was meatloaf night, with salad and heavy honey mustard dressing, black-eyed peas, and homemade peach ice cream for dessert.
The neurologist put BR on a more sustained schedule of steroids. Instead of three grams of prednisone every three months, he's taking one gram every four weeks. The difference in his energy levels, appetite, and comprehension is amazing. Please, no whammies!
Thursday, June 18, 2009
Wednesday, April 8, 2009
Birthday Guilty Pleasure #2: Cooks Illustrated Video Podcast
If you go to the Cook's Illustrated website, they want you to join before giving you access to the podcasts. But if you go to iTunes, you can download and watch them for free!
Wouldn't a "Fluffy Yellow Layer Cake" be perfect for both a special person's birthday and Easter?
Wouldn't a "Fluffy Yellow Layer Cake" be perfect for both a special person's birthday and Easter?
Sunday, March 15, 2009
Social
BR and I had a delightfully social Saturday evening. After getting a late start to the day, our friends Tad and Susan stopped by for dinner. We had pork cutlets, green beans, and jalapeno corn bread. A fantastic meal, and fantastic company.
While we were on the porch chatting, we met the new neighbors, Elaine and C.J. A delightful couple with two of the sweetest dogs you'll ever meet. Both C.J. and I work for software companies based in Silicon Valley, and it was nice to "geek out" for a bit.
And to cap off the evening, we stopped by a party at our neighbors across the street. The wife works for the state department of Family and Protective Services, and at the end of a very rough week involving a child death, she and her co-workers were gathering to blow off steam in a big way. It did us good to see the bond they shared, making the burden bearable.
While we were on the porch chatting, we met the new neighbors, Elaine and C.J. A delightful couple with two of the sweetest dogs you'll ever meet. Both C.J. and I work for software companies based in Silicon Valley, and it was nice to "geek out" for a bit.
And to cap off the evening, we stopped by a party at our neighbors across the street. The wife works for the state department of Family and Protective Services, and at the end of a very rough week involving a child death, she and her co-workers were gathering to blow off steam in a big way. It did us good to see the bond they shared, making the burden bearable.
Wednesday, December 17, 2008
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!
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.
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.
Saturday, August 9, 2008
Subscribe to:
Posts (Atom)
Posts
