Sunday, September 6, 2015

Does a Positive Attitude Help?

Attitude is often discussed in cancer world.  For a while it was common to tell cancer patients that if they kept a positive attitude, they might be able to fight cancer.  At one point in time, it became controversial in breast cancer cases. Women felt like they were being forced to put on a happy face while facing a serious battle for their life, a stereotypical expectation of women. A coworker with breast cancer once told me that it really pissed her off when people told her to be happy.  She said it was as if people were blaming her for her cancer.

When Ted was first diagnosed, I didn't have any happy thoughts.  I had horrible thoughts. I took what the doctors said to heart and bawled for a year. Family and friends told me to think positively- that my thoughts would somehow change his outcome. They gave him a year to live, maybe less.  I couldn't see beyond the prognosis, and nothing was going to change my attitude. It's a good thing my attitude didn't have an impact on his outcome. Ted, on the other hand, never felt stress.  He never worried or cried or talked about his impending doom, but he didn't have a choice in that.  Once they removed the right frontal lobe, they took away his ability to feel stress.  He considers it a blessing.  It's like a constant drip of Lorazepam.

So does attitude make a difference? Either the attitude of the patient or caregiver? I've never seen any significant research that says it does, but  I do know that freeing my mind of the fear and anxiety, certainly made life a lot more enjoyable, and keeping active helped to block the negative thoughts, and when has having a positive ever hurt anyone?

Recently, I came across a wonderful blog by Beth Carlton.  She was recently diagnosed with a GBM and has been doing her best to focus on the positive. I love her voice and the attitude of hope she is trying to spread.  If you'd like to read another warrior's journey, click on this link.  Stay strong and try not to feel guilty for feeling like crap and not being happy.  Sometimes those days are hard to find, but do try to find a way to get out of your head every now and then.  Ted's ability to not stress has taught me a lot.
Image result for cancer cartoons about attitude

Tuesday, August 18, 2015

FDA Approves New Treatment for Reccuring GBMs

For many years, those of us living in brain cancer world have heard stories about a non-invasive treatment for glioblastomas that involve the use of electrical pulses that target brain tumors.  It always sounded very much like science fiction.  Patients place a cap on their head and electrical pulses are sent to the tumor site.  No surgery or radiation involved.  I was thrilled to see that it's not just science fiction anymore, and that there is yet another promising treatment for recurring brain tumors that can't be treated with surgery or radiation.

Click here to read an article about this new and innovative treatment from Mayo Clinic.  

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.   


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.