Tuesday, March 31, 2009

While the cat's away

Yesterday, I sync'ed BR's iPhone with his laptop. Based on the photos he took, it looks like he kept his aunt and mother pretty busy while I was gone

The lawn had its first mowing of the year.

The garage was organized.

All the downstairs rooms were straightened up.

They even found time to play with the neighborhood spider.

We can't thank Beth and Dede enough for all they've done! And all it took was me getting out of the way.

Monday, March 30, 2009

Spring 2009 Trip Report: Silicon Valley and Chicago

I spent Monday through Friday back on the VMware home planet: Palo Alto. You know, there is really no substitute for hallway conversation. Twitter, IRC, IM, e-mail all pale in comparison. Informal interpersonal communication is the stuff that keeps software development groups focused on the common goals of the company. I feel like my self-imposed exile in Texas has put me at a bit of a career disadvantage, but I do my best to learn and teach from a distance. These quarterly visits back certainly recharge my engineering batteries.

From the San Francisco Bay, I flew to my home planet: Chicago. As I had mentioned before, my mother is in a nursing home. It's strange to think that exactly one year ago, we were preparing to meet in Las Vegas to celebrate my 40th birthday.

She came with my Aunt Helen, and I could tell at the time that something wasn't quite right. But I was surrounded by family and friends, both old and new, and I chose to defer to my mother's judgment. Within a week of returning home, she was in the hospital with an infected cyst on her groin. That infection turned necrotizing, and required major surgery to clean up. When I flew home to visit at the end of April, she could barely recognize me -- sepsis had set in and was affecting her brain. Yet she still responded to polka music, and strangely, whenever she was in pain, she would laugh.

There was a brief attempt to bring her home in July, but persistent bowel and bladder issues, along with general weakness put her back in the nursing home within a month. From there, she's been bouncing back and forth between the nursing home and hospital as the infections wax and wane.

She's now in a long term care facility, and the primary purpose of this particular visit was to move my father into a new house closer by. It was truly a family effort that included my Uncle Jim, Aunt Mary Jane, four of their five sons, three of my four sisters, three spouses, and a fantastic steak dinner at the local Moose Lodge. "If you want to talk Moose, do it at the semi-monthly meetings, not at the bar."

We completed the move in record time, and just before a late winter snow storm blew through.

Mom has gotten much better mentally, but the bowel and bladder issues are keeping her down. "I pee like a puppy," she's fond of saying. She's become quite introverted -- it takes a lot to draw conversation out of her. We played a few hands of Crazy Eights during which I got some stories about her fellow residents. She just wasn't willing to discuss any of the medical options being offered.

After she thoroughly kicked my ass at cards, it was time to say goodbye. But not before I simulated a wheelchair Tilt-A-Whirl ride for her in the hallway. It always was her favorite.

Wednesday, March 25, 2009

It's a little early for April showers

It's late at night. I just want to get some food and go to bed. I start to back out of my parking spot, when suddenly the parking lot turns into a car wash.

Seems the sprinkler heads are right next to the curb, and this unfortunate one popped up under my bumper.

Gotta remember to wash the minivan when I get home.

Monday, March 23, 2009

California wakin'

... on such a spring day.

It always surprises me how long it takes to get out to the west coast. Maybe the FAA is getting more cautious with weather related slowdowns. Maybe I'm just getting older.

In this case, my connecting flight out of Las Vegas was delayed by 3 hours due to high winds. I was able catch an earlier flight to San Francisco that was also delayed. My luggage was not so lucky. Still, it gave me a chance to get the rental car and grab dinner at In-N-Out. Mmmm. Double Double, fries, and a chocolate shake.

Then back to the airport to collect my suitcase, and a short drive into the city. I can certainly recommend the San Francisco Marriott. Just blocks from Union Square and the Moscone Center. And at 35 stories, you can get rooms with a view. Thank you, Priceline!

When I woke this morning, my first instinct was to check on BR. Having two double beds in the room reinforced the delusion. Where the hell did he go? He can't walk!?! Oh yeah.

I needed this working respite.

Thursday, March 19, 2009

SCS trial to be scheduled for early April

We got the call from ANS yesterday evening. The insurance has approved the spinal cord stimulation trial, and we are tentatively scheduled for April 3rd. I'm still a bit freaked out that we are going to allow someone to implant wires in BR's spine -- wires that will be sticking out for the duration of the trial and connected to a controller. Oh boy! I guess if I got past the suprapubic cystostomy tube, I can get through this. It's only temporary.

Now we just have to knock out this latest UTI, and BR will be good to go. Cipro twice a day for 2 weeks should do it.

We are definitely having a rough transition from Adderall to Provigil. After completely replacing the Adderall, BR's mental fog is back. He's sleeping 12-14 hours at night, and in his chair during the day. All this unconsciousness puts him at a greater risk for pressure sores; I'm being extra vigilant. A call to BR's pain management team lead to the suggestion of reducing the Provigil from 2x to 1x/day, and staying off the Adderall.

steve: "So you are saying that less is more?"
PMT: "Yes."

We'll give it a shot. I leave for California on Sunday, and would really like him to be more self-sufficient for his mother and aunt.

Sunday, March 15, 2009

Guilty Pleasure: Tranny Rock

I guess it all started when BR and I saw "The Ethel Merman Experience" in Dolores Park, Easter 2004. Here they are doing Classic U2 and Beatles covers.


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.

Thursday, March 12, 2009

Fortuna has started the road to recovery

After 10 hours in the operating room, Gina has started her recovery. The doctors say they were able to remove essentially all of the tumor. Occupational and physical therapy starts tomorrow. Outlook is 4-5 days in the hospital, then 4-6 weeks of recovery in the care of her good friend, Mary Pat.

Little plug for Mary Pat: She occasionally volunteers as a stand-in D.J. on WWOZ in New Orleans.

Keep all the prayers and well wishes coming. Looks like they are working!

Wednesday, March 11, 2009

The dangers of comparison living

Always appear to be someone better
You know there will always appear to be someone worse

From Equality by Howard Jones
It's often tempting, when times get tough, to take a look around and take comfort in the fact that my life could be much worse. In the face of BR's progressive MS, I even find myself making comparisons to "future me", as in "someday in the future, I will be longing for today."

The comfort that downward comparison living provides is temporary at best, and can lead me on a downward spiral if I'm not careful. I end up setting a standard of living that is minimally above where I don't want to be, instead of achieving the life I was put here to live.

Upward comparison living is just a dangerous. I tell myself that I am looking up to others to set goals for improving my life, but I really end up feeling discontent for the life I have over things I don't need. I've seen friends over-extend themselves financially just to "keep up with the Jones".

So I try to catch myself when I start in with these thoughts, remind myself of all the good stuff I've yet to achieve, and get on with my life.
Everyone has got their character
Everyone has got their personality
But the longing is still the same
So what is the answer? Be easy on yourself
Make yourself feel at ease. Maybe that's the answer

Tuesday, March 10, 2009

Good Lord, Have Mercy

OK. BR has MS like few others. Gina has a brain tumor.

But did you know...

My mother has been in and out of the hospital for a year with recurring bladder and bowel infections. She's now in a nursing home, and my father is relocating to be closer.

My sister who overcame breast cancer is now in line for a hysterectomy.

My sister who has been unable to successfully conceive for several years is now in her second trimester.

My godchild who is one of the most gifted track and field athletes in Illinois history is struggling with her classwork. And I love her.

And I love her.

My Monday

My Monday was typical, as steve couldn't wake me up until 10am, and then get me to understand the commands of drink water and take morning pills until 10:45am. Poor darling was terribly frustrated with me. My caregiver, Josue, showed up as usual around 12:08, and relieved steve to go upstairs to work for the afternoon. We had the normal, eternal toileting for 1.5 hours, then shower, then shave, then the painful rolling back and forth to get dressed. Then, it was 3:30pm.

The rest of the day was spent... hmm ... he cleaned up the kitchen, while I was doing ... what?... I can't remember what I was doing.

[BR, at this point gets very frustrated that he can't remember. He wants to capture the fact that he has tried to remember for 25 minutes.]

Monday, March 9, 2009

Tilting at Windmills

What do you do when the medical community doesn't know how to alleviate your pain? What do you do when the insurance company defers coverage for your prescribed medications for over a week? What do you do when you know there is a weed that will take away your pain, and yet make you a criminal?

I think we all know where this blog is heading. Out of the hospital bed, and into the streets!

Wednesday, March 4, 2009

His laughter is my drug of choice.

I'll admit it. I'm addicted to his full-body laugh. Not that patronizing one I get when I say something incredibly witty that he didn't really hear but he saw the expectant look on my face and threw me a bone. No, I'm talking about the laugh that only comes when I get it, and he gets it, and we know how stupid it is, so we do it again. And we still get it. And we laugh until we can't breathe and tears are running down our faces.

These days, that kind of laughter has been in short supply. Since the failed intrathecal pump trial, his pain is a guest that insists on hearing every word I say, then analyzes what a poor joke I'm making. In the end, my jokes have the opposite of the desired effect.

And all this while he is taking enough opioids to kill most men. Jack Osbourne would be paying me to tell jokes half as funny.

So like most good addicts whose supply has dried up, I've found alternatives. I'm blogging more and hanging on every comment. I'm being hypercritical of the American Idol contestants. Hell, I'm being hypercritical of everything, including myself.

And then tonight I got a fix. I put BR to bed and set him up on his side to ward off bedsores. He wanted some water before I changed the pain patches, so I grabbed the mug and made some stupid comment. And he started laughing. And he didn't stop. And I laughed. And we laughed. And we stopped. And we laughed again just as hard. Oh God, it's better than sex!

When we lived in California, the laughter came a lot easier. So much has changed since then, not the least of which is the loss of medicinal marijuana. You can take your Marinol and shove it, Texas. It is not a replacement for good, old fashioned, American grown, God created, pain relieving, appetite increasing, mood elevating pot! By criminalizing such an effective drug with centuries of recorded safe usage, you are condemning BR to be a guinea pig for the pharmaceutical and implant industry.

I invite every politician that has ever opposed the medicinal use of marijuana to come and care for BR for a month. In fact, I insist!

Tuesday, March 3, 2009

Jealous Friend Seeks to One-Up Ill Man

SLIDELL, LA (BS) — Gina, long harboring jealousy over the attention Bobrobert has been getting since his MS diagnosis, has finally gotten a diagnosis of her own.

"When I noticed numbness on my left side, I didn't want to get too excited. Then it progressed into weakness, and I knew I really had something here."

A visit to the neurologist, and an MRI scan of her cervical spine confirmed her suspicions.

"There was this blob at the base of my brain," Gina said, barely able to contain her excitement. "When the doctor said it was a meningioma, I didn't know what that was, but I knew I had to tell Bobrobert right away."

According to the Mayo Clinic, "Meningioma is a tumor that arises from the meninges — the membranes that surround your brain and spinal cord. The majority of meningioma cases are noncancerous (benign), though rarely a meningioma can be cancerous (malignant). Even if a meningioma is benign, it isn't harmless. A meningioma can press on the brain and spinal cord, causing complications such as vision loss or paralysis."

Bobrobert, reached for comment at his Austin home, isn't impressed. "It's probably completely operable and benign. I told her to call me when she's in a wheelchair."

Bobrobert's partner, Steve, was unavailable for comment. People close to the couple report that they are actually heartbroken by the news, and are coping by making inappropriate and tasteless jokes.

"I knew it!", Gina exclaimed when told.

SCS trial still in a holding pattern

BR and I went and saw the pain management doctor today. It wasn't as bad as I had feared. Sure, there was a certain amount of CYA going on, but nothing that I would consider harmful to BR. I've decided to go ahead and discuss BR's medications here, but not dosages or doctors names. The community benefits cannot be discounted.

So we are going to try to wean BR off the Adderall and replace it with Provigil. We'll let you know how that works out. It seems to be all the rage among Silicon Valley executives.

We also discussed the placement of the SCS trial leads in BR's spine. After reviewing the latest MRI report, the doctor agreed that we should plan on trying a cervical spine placement in case a thoracic placement is not effective. It is now up to the insurance company to approve the trial. The doctor promised to keep the ball in their court.