Monday, December 23, 2013

A Tribute to Michael Weiner by Team healtheo360

Team Healtheo360 has posted a sober, honest, video tribute to Michael Weiner who passed due to GBM. The video is revealing, thought-provoking and worth watching for anybody who is a brain tumor victim, caretaker or friend/relative of either.


Thursday, December 19, 2013

Sleep, brain-flushing & toxins

The National Institute of Health reports that a new study “…suggests that sleep helps restore the brain by flushing out toxins that build up during waking hours.” http://www.nih.gov/researchmatters/october2013/10282013clear.htm

Since I don’t like toxins in my brain, and I suspect you don’t either, I decided to read further.

According to the website posting “Dr. Maiken Nedergaard and her colleagues at the University of Rochester Medical Center recently discovered a system that drains waste products from the brain.”

While I’m a bit worried that this system could drain quite a bit of what’s in my head, I read on and learned “…the glymphatic system (aka the brain draining system) can help remove a toxic protein called beta-amyloid from brain tissue. Beta-amyloid is renowned for accumulating in the brains of patients with Alzheimer's disease.”

Among all sorts of other brain-related concerns, I do worry about Alzheimer’s (mostly when I can’t find my car keys). The question is, though, how does this new info help us?

The posting goes on to say “The study raises the possibility that certain neurological disorders might be prevented or treated by manipulating the glymphatic system” which gave me some closure or hope or maybe just a chance to sleep sounder tonight.


Image credit: <a href='http://www.123rf.com/photo_2680500_sleep.html'>czardases / 123RF Stock Photo</a>

Monday, December 16, 2013

Surviving Cancer’s “Knock-On” Effects



I just read a thoughtful article about surviving survivorship by Laura Landro, assistant managing editor of The Wall Street Journal. Her December 9th article, entitled “The Next Front in Cancer Care” is nicely summarized in the sub-head: “As More Patients Survive, Cancer Centers Handle Disease's Knock-On Effects” - http://online.wsj.com/news/articles/SB10001424052702303330204579248400281496142  

Ok, so what are “Knock-On” effects? 

Landro says “For cancer patients, getting through the rigors of treatment is the first hurdle. Then, life as a cancer survivor poses its own daunting physical and emotional challenges.”

Depressingly, she notes that these challenges are “Chemotherapy and radiation can damage vital organs such as the heart and liver, possibly causing secondary diseases years later. The body can be debilitated, cognitive functions impaired and emotions distressed, making return to normal life and work difficult. Some 70% of cancer survivors experience depression at some point. Patients have higher levels of anxiety years after the disease is cured. And there is always the chance that cancer will return.”

Arrggghhh! That’s scary. I’ve read about all the meningioma brain tumor victims panicking about their 6 month post-surgery MRI on ABTA’s Inspire website, so this feels both true and upsetting: https://www.inspire.com/groups/american-brain-tumor-association/discussion/meningioma-6-month-postoperative-mri/

Some cancer centers are starting to address this according to Landro, “A growing number of hospitals and community cancer centers, which treat the majority of the nation's cancer patients, are launching survivorship-care programs. These include treatment follow-up plans, physical rehabilitation and emotional assistance, such as counseling and support groups. They resemble programs currently offered by big urban cancer centers like MD Anderson in Houston and Memorial Sloan-Kettering in New York.”

Laurence Gonzales has written an entire book on this entitled Surviving Survival, which is neatly summarized in the Amazon.com description, “You have survived the crisis—trauma, disease, accident, or war—now how do you get your life back?” And while he doesn’t focus on surviving brain cancer, I believe the emotional landscape for “getting your life back” is the same.


Image credit: <a href='http://www.123rf.com/photo_23646158_fight-cancer-and-treatment-for-cancerous-tumors-health-care-symbol-with-a-medical-metaphor-of-hope-w.html'>lightwise / 123RF Stock Photo</a>

Friday, December 13, 2013

Brain Tumor Blogger Starts Every Day Being Grateful

“I am utterly and unequivocally grateful for the cancer that is currently trying it's hardest to end my life.  Seems ironic, but without this cancer I would not be the person I am today.  Being diagnosed led me onto this road, a road that is exceptionally frustrating, difficult, sad, depressing, joyous and miraculous.  It has introduced me to some of the most amazing, inspiring and beautiful people I have ever met in my life.”

That’s a quote from Ryan of http://ryansepicbattle.blogspot.com/

This “grateful for cancer ” business all started from a conversation he was having with a friend (ironically at a café called “Gratitude”) who suggested that he “… wake up every morning and think of 5 things you are grateful for and if you can't think of 5, think of 4 or 3 or 2 or 1...  It could be anything from the bed you sleep in to the love you share with your family of friends.”

At some level this advice seems shallow, insipid and recklessly insensitive. This is a millennial struck down in the prime of his life with a relentless disease that almost always wins in the most depressing manner. Grateful? Are you smokin' dope?* You've got to be kidding!

Yet in his most recent blog posting Ryan says “…what I am most grateful for is Grade IV Astrocytoma aka Glioblastoma Multiforme.” (!)

Crazy, inspiring, focused, fearless - these are all words that come flooding into my crowded head when I read his blog. You should read it too.

John

*Yes, he might actually be smokin' medically-prescribed dope, but that's fodder for another day.


Image credit: <a href='http://www.123rf.com/photo_12704536_thank-you-or-thanks-concept-with-hand-word-and-paper-isolated-on-white-background.html'>ashumskiy / 123RF Stock Photo</a>