Discharged, but not discouraged

I woke up this morning feeling a bit down. With each new procedure to control BR's pain, my expectations get set at ever decreasing levels. Yet still, I have expectations. When pain relief didn't find BR yesterday, disappointment found me and decided to stay the night.

But after a nice hot shower, I decided to take stock of some of the good things that we've discovered.

• BR tolerated the three hour drive to Houston quite well, and is willing to consider some leisure travel.
• He is able to rest comfortably on a regular bed with just the alternating pressure pad, a foam wedge, and lots of pillows. This opens us back up to air travel. We'll just need to rent a shower chair, and of course a ramp van for cities without ramp taxis.
• Caregiving duties seem a bit less burdensome in new environments. At home, anything that upsets the routine is viewed negatively. On the road, there is no routine. My problem solving instincts get a workout as we adapt to each situation.

So when I went to pick up BR from the hospital, I did so with an intentional optimism. There are still four more days left in the trial, and pain relief may still find BR.

We see the doctor next on Wednesday for another adjustment.

BR and Prialt - Day 1

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



Discharge is still scheduled for Tuesday AM.

And it's in

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

Waiting for the doctor

Waiting to be called back

Prialt trial starts Monday

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

Monday:

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

Tuesday:

• Dosage adjustment
• Discharge from hospital

Wednesday:

• Dosage adjustment

Friday:

• Dosage finalized
• Catheter removed and trial ends

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

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

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

Mama, Aunt, Fosamax, Prialt

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

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

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

The McDonald's exercise program

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

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

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

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

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

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

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

Mama said to make it really wet

BR makes cornbread dressing using the family recipe.

Thanksgiving wishes

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

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

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

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

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