Calmer nights, busier days

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

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

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

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

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

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

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

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

His worst pain

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

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



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

I'm desensitized to all but his worst pain.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I wanna be sedated

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

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

Geaux Saints!

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

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

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

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

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

Just breathe

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

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

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

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

That didn't sound like much fun.

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

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

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

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

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

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

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

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

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

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

Seems we just get started and before you know it

... comes the time we have to pull the tube.

The trial failed. There was no relief. No side effects. No effect whatsoever. We'll ask the doctor about the chances of a mechanical failure of some sort, but it just doesn't look good.

No matter the outcome, I believe in celebrating beginnings and ends. So last night we had a delicious dinner at Pappadeaux. BR had fried catfish, shrimp, and onion rings, and I had a filet and rock lobster. We sat up at the bar, which is where we are most comfortable, and drank a toast to hope.

Push it up! Push it up! WAAAAY UP!

The pain doctor saw BR this afternoon. He didn't seem worried that BR has not yet responded to the Prialt, telling us that they start with a "center of the bell curve" dose. This means that at this does, about 50% of the people get relief. He then increased the dose from 2 micrograms/day to 9 micrograms/day, saying that BR should definitely notice a difference in pain level by dinner time, but will also likely to have some mild side effects.

He also commented on BR's sacral insufficiency fracture, and repeated the Which doctor's recommendation of sacralplasty. When I said it wasn't considered medically necessary by the insurance company, he was surprised, and offered to make a case on our behalf. Sweet!

Discharged, but not discouraged

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.

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.

---

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.

BR reenacts a scene from Sixteen Candles

The doctor has put BR on high dosage vitamin D for two months after blood work showed he was about a quart low. He also had a bone density test this morning.

Bed rest seems to have helped the fracture pain some, but he still seems to be fighting an infection, as his skin is on fire.

Sacral Bleu!

I was in a work call when I got the text message.

Dr. called. Will call back in 10. Please come down.

BR wasn't sure which doctor had called. When the phone rang, it was the Which doctor. The MRI showed a sacral insufficiency fracture (SIF), which would explain the new hip pain. These fractures usually occur in older women with osteoporosis. <Insert "BR gets all the lady problems" joke here.>

The doctor offered a couple options: bed rest or sacroplasty. The latter is a new procedure, and he is only one of two doctors that perform it here in town. He did warn us that the insurance company will likely consider the procedure experimental, and hinted at finance options should we decide to proceed without insurance approval.

From our insurance company:

Percutaneous sacroplasty is considered investigational and not medically necessary for all indications.

[...]

Standard treatment for SIF includes bed rest, limited weight-bearing activities, oral analgesics, and sacral corsets. Improvement of symptoms may take as long as 12 months.

The Which doctor says that even after the fracture heals, the pain may persist, requiring sacroplasty anyway. Other sources say that 90% of patients get better with bed rest and limited weight-bearing activities.

For now, I think we'll go the bed rest route, and look into treating BR's osteopenia, which was diagnosed a few years back, even before the MS. If the pain doesn't improve over the next few weeks, sacroplasty can still be performed.

Orange you glad you don't have implants

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.

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.

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.

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.

Toxic Snail Venom, anyone?

Oh this just keeps getting better and better. We had our monthly visit with BR's pain management team today. The doctor sat in on this one, as there has been some turnover in his office staff. I thought this was going to be the standard "take the vitals and collect the scripts" visit. Instead, BR and the doctor exchanged words during which the doctor suggested BR might be better off under someone else's care. Wow. We haven't seen this guy in the flesh since April, and he completely loses it in response to BR's frustration with him not being more engaged with the case.

How was BR to know that the Which Doctor, as I will call him from now on, had finally done some research and actually had a recommendation?

He is ready to refer us to the Pain Management Center at the MD Anderson Cancer Center in Houston. In particular, he thinks that given BR's opioid tolerance, he might respond better to Prialt delivered via a pump intrathecally. Prialt is a synthetic drug modeled after the toxic venom of the cone snail.

BR's pain levels are steadily getting worse, and we are no longer finding that "sweet spot" between pain and mental fog. Toxic snail venom is starting to look pretty good.

Nature's Pain Relief

Not enough to relieve the drought, but it sure was nice.