Tuesday, May 3, 2016

Canadian (Brain) Cancer Survivor Network

If you are a brain tumor victim or caretaker or friend or family member, I would advise you to read blogs and books written by other victims, caretakers, friends and family members. 

When I did, I learned that

  • I’m not the only one struggling with _______ (pick your tumor)
  • Others know how devastating the emotional hurdles are, let alone the chemo and radiation
  • Other people have had these problems and survived

You can find a great listing of brain cancer stories on the Canadian Cancer  Survivor Network: http://survivornet.ca/en/groups/blogs/brain_cancer_2


PS – Importantly, they all ain’t happy stories with Hollywood endings.

Sunday, May 1, 2016

2016 Ependymoma Awareness Day

The CERN Foundation will commemorate Ependymoma Awareness Day with a mass butterfly release that will take place on May 2 during the 2016 Head to the Hill activities.  The butterfly release will be video-taped and posted on the internet so that supporters unable to attend Head to the Hill can participate and share in this moving occasion.

This is a fund-raiser. The $ from every butterfly bought aids the Cern Foundation - a wonderful nonprofit dedicated to eradicating this horrible disease.

Not interested? Before you click away, please watch this Youtube video: https://www.youtube.com/watch?v=57B50Zu2qwA

Copyright: <a href='http://www.123rf.com/profile_mrthreeson'>mrthreeson / 123RF Stock Photo</a>

Tuesday, April 26, 2016

Researchers find potential new treatment target for deadly brain cancer

That’s the title of an abstract from the Ottawa Hospital Research Institute. The summary says “A key player in brain tumor formation has been found that may lead to new therapies for a deadly and incurable cancer. The study is the first to show that a protein called OSMR (Oncostatin M Receptor) is required for glioblastoma tumours to form. Glioblastoma is one of the most deadly cancers, resistant to radiation, chemotherapy and difficult to remove with surgery.”

I don’t have anything to add to the quotes from the lead author, which I’ve cut and pasted in the following:

"The fact that most patients with these brain tumours live only 16 months is just heartbreaking," said Dr. Arezu Jahani-Asl, the lead author who performed this research largely in Ottawa while she was a postdoctoral fellow co supervised by Dr. Michael Rudnicki at The Ottawa Hospital and the University of Ottawa and by Dr. Azad Bonni from Harvard Medical School and Washington University School of Medicine. "Right now there is no effective treatment, and that's what drives me to study this disease." Dr. Jahani-Asl is now an assistant professor in the Department of Oncology at McGill University and a principal investigator at the Jewish General Hospital, with a laboratory dedicated to how glioblastoma develops.

PS - Please excuse the the morbid black and white graphic, but I'm feeling awfully sad about this GBM and the near term options for victims which, at this moment, still seem to be slim and none. 

Copyright: <a href='http://www.123rf.com/profile_lightwise'>lightwise / 123RF Stock Photo</a>

Friday, April 22, 2016

Chief Complaint, Brain Tumor

I once had somebody smart tell me that a good way to sort deal with a difficult situation is to get it out of your head by writing it down.

And while I couldn’t get my brain tumor out of my head by writing it down, I found that writing about my tumor (meningioma) helped me deal with it.

I generally tell folks that while there is nothing funny about having a brain tumor, like Roberto Benigni’s movie, Life is Beautiful, this book explains how I used humor to remain sane when faced with the insanity of a brain tumor the size of my wife’s fist.

The story loosely chronicles the first year I spent addressing tumor-related health issues: preparing for the (first) operation, having a skull infection, having the infected portion of my skull removed, undergoing rehab and radiation treatment, and learning to live with my “new normal” (the words “new normal” are the medical community’s code words for “you’re alive so quit complaining”).

More important than the details of my health woes, however, were my emotional reactions to those events.  As my health changed, so did my sense of humor. It started out superficially light-hearted prior to the first operation; transmogrified into gallows humor after several operations; and leveled out as somewhat wry-ish after radiation and significant rehab. You will see this in my often embarrassing interactions with friends, family and medical professionals of all shapes and sizes.

Should you for some strange reason want to know more or (gasp!) buy it, here’s some links: