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

John

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

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:

http://www.chief-complaint.com/

 

http://www.amazon.com/Chief-Complaint-Brain-John-Kerastas/dp/0865349088/ref=sr_1_1?s=books&ie=UTF8&qid=1351092114&sr=1-1&keywords=kerastas

http://www.sunstonepress.com/cgi-bin/bookview.cgi?_recordnum=768

 

Brain Tumor Art: Morbid & Fascinating

Art is often used to deflect, diffuse and otherwise help us make emotional sense of horrible events. Examples include memorials at traffic accidents, war memorials and art for domestic violence survivors.

This, however, is the first example I’ve found of the visual art of brain tumors. According to Corrine Segal a PBS News hour post - http://www.pbs.org/newshour/art/art-brain-tumors/ - “…that’s the surprising beauty of ‘Connecting Narratives,’ artist Dr. Immy Smith’s project to bring new attention to brain tumors and the dangers they pose.

Smith, who studied biomedicine before earning a doctorate in pharmacology, is a artist-in-residence at the Brain Tumour Research Centre at the University of Portsmouth in the U.K. There, she worked with the lab scientists to develop an exhibition visualizing the often-unseen issue of treating brain tumors.”

Segal goes on to write that “The exhibition, currently on view at the Aspex Gallery in Portsmouth, (UK) consists of two parts. For the first, Smith created 121 paintings to represent the more than 120 types of brain tumors that exist. She used two colors meant to symbolize the two types of cells, neural and glial, from which brain tumors can arise. ‘Just as you can make many patterns from just two colors of ink by blending them in different ways or in different amounts, there are many types of brain tumors arising from differential expression of genes in just two cell types,’ she said.”

Her next step was, I thought, quite smart and moving.

“Then, she created large-scale ink drawings to which visitors can add their own lines using white-board markers. Both pieces comment on the complexity of brain tumors, providing a visual reminder of why they are so difficult to treat…”

Here’s her great summary of the cruelty and complexity of brain cancer:

“They’re really devastating diseases. They’re one of the only cancers that can directly affect your cognition and personality…”

 
Have a look: http://www.pbs.org/newshour/art/art-brain-tumors/

ABTA – “CARING FOR THE CAREGIVER” WEBINAR

I applaud the American Brain Tumor Association for their series of webinars on brain tumor related topics. For many victims, caregivers, family members and friends of brain tumor-impacted folks, jumping in a car and driving to a seminar at some far away (or even near) location is often not an option. So the insight of providing relevant and important information through webinars that you can view at home is great.

This is the blurb on their upcoming webinar entitled “Caring for the Caregiver”:

“Learn more about caring for the caregiver, including:

Challenges faced by caregivers, such as fatigue, serious role changes, depression and grief related to the trajectory of a brain tumor

• How to cope with their loved one’s sudden or significant neurological and functional changes
• Short- and long-term strategies to manage these challenges
• How to find educational, financial and emotional support
• Ask our expert, Vicki Leff, MSW, LCSW, ACHP-SW, questions and get the answers you need"

And here’s the registration link: https://attendee.gotowebinar.com/register/1730607485354015746

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

Man Plays Saxophone During Tumor Removal

Ok, this is just too weird, creepy or, I don’t know, maybe “miraculous” to not blog about.

According to a posting on the NPR website, “The team of doctors who recently operated on Spanish musician Carlos Aguilera's brain wanted to be sure they didn't affect his ability to play the saxophone – so they had him play songs during a 12-hour surgery.

A partially sedated Aguilera obliged, playing "Misty" and other songs, in addition to reading sheet music. In a video of the procedure, the mellow tones of Aguilera's saxophone blend in with the normal sounds of an operating room.”

Here’s a link to the post: http://www.npr.org/sections/thetwo-way/2015/12/19/460380252/brain-surgery-serenade-man-plays-saxophone-during-tumor-removal

To me this just raises all sorts of questions, some of which are reasonable, like:

• Is this the first time patients have played instruments during brain surgery?
• Can you play other Instruments?
• And, lastly, did anybody applaud?

The answers are “no”, “yes” and “I don’t know.”

And now for the good news, he’s fine! “The 27-year-old was sedated, on painkillers, but remained conscious during the entire multi-hour operation.

NPR’s Lauren Frayer reported that "Doctors were removing a brain tumor, and wanted to ensure the surgery wouldn't damage Aguilera's musical ability. It was the first such surgery of its kind in Europe.

The operation took place in October, and Aguilera recently went public to say he's been cured — and continues playing his sax with an orchestra in the southern city of Malaga."

Here’s the link: http://www.npr.org/sections/thetwo-way/2015/12/19/460380252/brain-surgery-serenade-man-plays-saxophone-during-tumor-removal

Frayer goes on to write that "Such procedures are meant to protect musicians' primary audio cortex and other parts of the brain that can affect their ability to play. (A story on NPR's Weekend Edition today looks at The Neuroscience Of Musical Perception, Bass Guitars And Drake.)"