Sunday, July 5, 2015

4th of July and Brain Cancer

When Ted and I first moved to our neighborhood, it was extremely quiet, which worked out well when he got his brain tumor because sound was a very big problem for him.  The neighborhood is still profoundly quiet with the exception of the 4th of July.  It's as if my quiet and mild mannered neighbors save it all up for one week of the year. Each year it gets louder and louder. Even though Ted is doing well on the tumor front, he does have hearing issues, so when we stepped outside to take a look at what the neighbors were up to, he had to cover his ears and go inside, where it was still loud, but at least he could take his hearing aids out and replace them with earplugs.  

Warning, this video is loud.  If you have a dog nearby or have the same sound issues with a brain tumor, you may want to turn the sound down. These clips were taken over a five hour period of non-stop noise July 4, 2015.   

video

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, I'm sharing Karnofsky 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.