Sunday, May 24, 2015

Nine Years and Counting: The Karnofsky Scale


It was nine years ago on Memorial Day weekend that Ted stumbled on a walk and our lives changed forever.  I know how lucky I am to have this man in my life.  This last year has been a stressful one. One friend died after a 20 year battle with brain cancer and another was attacked again after eight years tumor free.  She's doing great and has beaten the GBM again, but she is a reminder of the aggressive randomness of this cancer. Ted's MRIs were a big concern this year as well, but the doctors assure us that we can hold our breath again for another six months.  

Support from my family and our friends has been tremendous over the years and our ability to travel to Arizona has been a key factor in keeping me sane and Ted healthy.  When Ted was first diagnosed, our oncologist discussed the Karnofsky Performance Scale with us. In a nutshell the scale is used to determine effectiveness of treatment and prognosis of patients.  The lower the number on the scale, the worse the prognosis.  This scale has been a driving force for me, even today, nine years later.  

Ted with KC and Zoey Memorial Day weekend 2015
Renaissance Trail, Vancouver, WA
As a caregiver, and someone who is hopelessly in love with my husband, I made it my mission to make sure Ted's score remained as high as we could get it. Exercising regularly and making sure Ted gets out of bed in the morning are daily routines. Because his frontal lobe was damaged, he has difficulty "initiating" things. Once I get him up in the morning and make sure he takes the medications that help to keep him alive and actively participating in life, he does very well.  It's that hour in the morning it takes me to convince him to get out of bed that is crucial. My schedule changed recently and it drastically affected him.  I was leaving too early to get him out of bed.  If he doesn't get out of bed, he stays there a large portion of the day and doesn't eat, or at least eat well, and he forgets to go to Tai Chi or to volunteer at the VA. He also forgets to shave and shower. 

 I'm mentioning this as a reminder to the caregivers out there who struggle to hold on to jobs while caring for loved ones.  It's never easy. Motivating someone else can be draining, and there are times when there's nothing one can do. The cancer wins and the fight is over.  I get that. I'm sharing this scale today for those of you who have loved ones who are successfully being treated with chemo and radiation but perhaps are having difficulty with quality of life issues. 

 For nine years, I've taken Ted to doctor after doctor, determined to find a "fix" for something there isn't a fix for, but I'm driven to keep our quality of the life the best it can be for as long as we can. Through this journey, we've discovered a cocktail of drugs to keep him alert and productive, and I've discovered that sometimes as much as I feel like pulling the covers over my head and staying in bed with him, it's not an option. I have used the Karnofsky Scale as a tool, or weapon.  I'll take anything I can get, so if any of you have suggestions or success stories, feel free to share them with me and I will pass them along.  



Tuesday, May 12, 2015

Programming Bacteria to Detect Cancer

This is an interesting Ted Talk about programming bacteria to detect and treat cancer.

Saturday, April 25, 2015

"YOU ARE BORING'" the Doctor Said

If you or a loved one has been diagnosed with a GBM , you've been told that it's not a matter of "if" it will return but "when," setting off a silent but horrifying ticking time bomb in your life.  Doctors don't drop this news gently.  They usually tell you to get your life in order, and encourage you to finish up that bucket list. 

"You can expect to live 6 to 14 months," they told Ted.

 Because you are reading this blog, it is likely that you or a loved one has been given this grim prognosis. It has been almost ten years since Ted was diagnosed.  That's ten years of our lives living under the umbrella of doom. It's categorically better than the alternative, so I'm not complaining, and I'd don't fault the doctors. They mean no harm and many are working hard to bring attention to this awful cancer, but I realized at Ted's last oncology appointment that even though we may never hear the word "cure" or even "remission," there are some words that can ease the pain.  

Dr. Kolibaba
Dr. Kolibaba impersonator 

 

Ted's oncologist, a brown haired Bette Midler look-a-like, blew into the room with her usual bolt of lightning energy, and said, "YOU ARE BORING. I don't need to see you again for six months."  


 Ted used to be a drama major before he became a physical therapist, so he couldn't help but make a face and pretend to be offended.  This reaction, of course, compelled all of the ladies in the room, two nurses and the doctor, to reassure him that this was the best possible news a patient in their office could ever get. 

 Ted said, "I never thought it was going to kill me anyway; besides, I have other health issues that will probably take me down first."  

Dr. Kolibaba looked a little startled.  

"What do you mean?  What else is going on with you?" she asked.

"I have cataracts and a blind spot," he said.

"That's not going to kill you," she said.  

"Yes it could," Ted responded." I could walk off a cliff or into a wall and fracture my skull."  

Ted makes them laugh, which is probably a very good thing in that office.  And it doesn't hurt for me to laugh every once in a while either.  



Friday, March 13, 2015

Backpacking in the Superstition Wilderness

Temperatures for our backpacking trip were predicted to be in the mid-sixties with partly cloudy skies and no rain, all of which was wrong. 

Our guides for this journey were Southwestern wildlife painter Anne Coe and her husband Sid. I consider Anne to be the queen of the Sonoran Desert.  She can identify every plant, animal, insect and pottery shard that has ever graced the land, and each time we passed a herd of cattle, she knew which rancher owned which cattle and the first names of the head wranglers patrolling the ranches.  That’s important to know, she warned us, because trespassing is about as popular now as it was in the Old West.

Ted, Roofie and me. 
After an early breakfast at my parent’s house, we loaded our gear into the back of their Toyota FJ Cruiser. Sid took the wheel and we drove to a jeep trail near Queen Valley, Arizona.  The goal for the day was to drive as far as the jeep would take us, then hike to Reed’s Water.  Anne, Sid and Roofie, their 70lb poodle, would leave us on the trail, and Ted and I would make camp at Reed’s water, then hike out the next day.

Anne warned me a few weeks ago that the road we were taking was bumpy and no whining from the backseat was allowed. Her last trip up that road was with a man who complained about a migraine and nausea most of the way.

“Don't worry, I never get car sick, but I'm a notorious backseat driver,” I confessed.
“Me too,” she said.   Then we looked at each other sheepishly and crawled into the back of the vehicle. Roofie took the seat between us. Ted sat up front with Sid.

Cat Claw Pinstripes on the FJ Cruiser
  Sid did a fabulous job piloting the trip.  He expertly maneuvered around boulders, cows and cacti, but not everything could be avoided.  Cat’s Claw, an aptly named plant, etched its way along the side of the SUV, gouging pinstripes into the blue paint. Sid informed us that "pinstripes" are a badge of honor for 4x4 enthusiasts.

For the rest of us, all we had to do was sit back,  relax and brace ourselves against skull fracturing drops in altitude.  The closer we got to the end of the ride, the more ragdoll like we had to become or we risked knocking ourselves unconscious.   

Roofie was brilliant.  He never barked a syllable.   Anne kept her shrieks to a minimum.  I was on my best behavior and didn't scream.  I  found the trip very soothing.  Each time we flew into the air, my hips received an adjustment better than a chiropractor could produce.  Of course Ted remained calm throughout most of the three hour journey. It’s easier for him to do that these days since the removal of his right frontal lobe, but even Mr. Calm had a brief moment of panic.

Cholla-meanest plant on earth
We (the backseat drivers) were having trouble regulating our body temperatures.  One minute we were roasting (I think this had to do with the 70 lb poodle occupying a large portion of the backseat) and the next minute we were freezing. Each time we started to overheat, we asked the guys to roll the windows down. There aren't rear windows in an FJ Cruiser. The temperature outside was only 51 degrees.  For several miles, the windows would go up and then go down.  It was on a particularly long stretch with the windows down that Ted’s moment of panic hit.  He was enjoying the scenery a little too much and didn't notice that we were about to sideswipe a Cholla Cactus.  The Cholla is the meanest cactus on the planet.  Ted gasped and I heard three other people scream, even Roofie stood at attention. Chunks of cactus exploded into the cabin. Several of those chunks landed on Ted's lap.  After that, Sid explained to Ted that passengers were responsible for objects entering their side of the vehicle.   From then on Ted was very vigilant about window duty. 

Anne directing Sid between a rock and a rock
When we reached the farthest point accessible by a 4X4, we got out of the car and hoisted our backpacks over our shoulders. I borrowed my pack from my nephew. He used it for scouting when he was ten years old. It was too small, but we couldn't afford new packs, so I was thankful for the loan.  Due to the narrow width of the pack, and the expanse of my adult shoulders, my armpits took the brunt of the 27.5lb load. Every few feet I would bend over to take the weight off of my armpits for fear that my arms would be torn from their sockets. This didn't feel anywhere near as nice as the 35 lb pack I tried on at REI. Rule number one when backpacking: Get a custom fit at REI. Don't borrow backpacks.

Ted's borrowed backpack a.k.a Dusty 
Speaking of borrowing backpacks, Ted was wearing Sid’s old backpack. It looked like a prop from a 1950s movie set. The supporting metal frame was on the outside. Nowadays, backpacks conceal the metal frames or use 21st Century materials to support the pack. The canvas portion of the bag was a nice hue of blue and dust.  It had seen a lot of trails and lived a noble life and Sid was having a hard time letting it go (literally). He followed Ted from behind, adjusted this and that and periodically stopped me to show me how to adjust  "this and that," and to make sure that I didn't let the tent fall out. I was having a hard time standing upright and wasn't sure I'd notice if the tent fell out, but I promised to do my best.  

Turn left at the rock and right at the cactus.
Anne pointed to a ridge a few miles away and told us to go right at the outcropping, cross over a boundary fence and turn left.   I was a little nervous about this because we were not on an official trail. We aren't trail blazers.  I like obvious trails with signs and dirt paths.  I'm not a fan of boulder hopping, especially when I'm carrying an oversized load in an undersized bag. Each time I'd hop on or over a rock, the pack pulled me backward. The only advantage to having all of that padding strapped to my back was that it might buffer my fall and prevent me from cracking my head open.

Just as we were about to part ways, Sid made a few more adjustments to Ted's pack. He grabbed hold of the long strap that goes from the shoulder to the hip, the one that holds it all together, instructing me, "Pull this strap here and...", but before he could finish his words the strap snapped in two, leaving a puff of dust in its wake. 

For several more minutes, we stood around contemplating our next steps.  Sid found a small tie the size of a shoelace and jury rigged the strap back onto Ted’s waist, but the backpack was still catawampus and putting too much weight onto Ted’s hip.  And what if the other strap broke?  This wasn't a good sign and not something I wanted to deal with out in the middle of nowhere.

Did I mention that Anne had been entertaining  us along the way with stories about a local rancher who regularly took “cute” videos of bears and mountain lions drinking from his water trough? 


I decided to pull the plug on this adventure. Ted agreed. We hopped back into the SUV, the skies burst open and hail pelted our windshield.  A dark mass swooped down over the mountain, devouring the Superstitions beneath rolling black clouds and rain shafts.  The temperature never got above 51. We went home, unpacked our gear and poured a glass of wine.  It was a nice day in cancerland.