“Top 10 things a caregiver needs to do for newly diagnosed GBM patient”

This is a recent post from the ABTA Inspire website that is so instructive and practical and understanding that I just had to repost the essence. Here’s the “top ten”. Please follow the link for details.

1. “realize that it is going to be hard - physically, emotionally on YOU, not just the patient
2. create contingency plans as soon as possible
3. understand your insurance benefits
4. determine what facilities you will use, if you have to - make decisions before you are in a crisis - what hospitals, rehab facilities, skilled nursing facilities, and funeral homes will you use if needed
5. get educated on how to make your home accessible for a disabled person and the related costs
6. get educated on financial and other help that is available
7. it is hard to manage all of the insurance paperwork & medical bill
8. accept the help that other can offer
9. understand your patients wishes for care while alive and for the funeral, etc
10. each out for help”

http://www.inspire.com/groups/american-brain-tumor-association/discussion/top-10-things-a-caregiver-needs-to-do-for-newly-diagnosed-gbm-patient/?ref=as&asat=141356328

Image credit: <a href='http://www.123rf.com/photo_12858145_word-top-10--written-by-a-chalk-on-a-blackboard.html'>timbrk / 123RF Stock Photo</a>

ABTA “Causes and Risk Factors Webinar”

Why did I get this #%*&# tumor? That’s a pretty normal reaction to learning that you have some evil entity living inside your skull and wreaking havoc with your brain, cognitive abilities, personality and everything else that makes you, you.

Often the answers you get are pretty vague and not particularly helpful.

That said, here’s an ABTA webinar that I believe will be particularly helpful: “Causes and Risk Factors of Brain Tumors”: http://www.inspire.com/groups/american-brain-tumor-association/discussion/causes-and-risk-factors-webinar/?msg_activity=recom_recorded

The blurb on the Inspire website says:

Join us online Wednesday, 2/12/2014 from 1 p.m. to 2 p.m. Central time as we present another ABTA webinar: Causes and Risk Factors of Brain Tumors.

Concerns about causes of a brain tumor, risk factors, heredity and the environment are normal with a brain tumor diagnosis. This webinar will provide an update on what we know to be some of the causes and risk factors of brain tumors including changes in the chromosomes.

Presented by Jill Barnholtz-Sloan, PhD, associate professor at Case Comprehensive Cancer Center at the Case Western Reserve University School of Medicine.

This webinar includes an online Q & A session with Dr. Barnholtz-Sloan. Click here to register for the free Causes and Risk Factors of Brain Tumors webinar:https://www3.gotomeeting.com/register/864687086

ABTA_Jillann

Connections Support Community Group Leader”

Image credit: <a href='http://www.123rf.com/photo_16852608_button-webinar.html'>so47 / 123RF Stock Photo</a>

Radiation Masks: Now What?

There’s the beginning of an strangely interesting and provocative discussion on the ABTA’s Inspire website revolving around what to do with that radiation mask after you’ve been radiated (or blasted or gamma rayed, etc.). Here’s the link: http://www.inspire.com/groups/american-brain-tumor-association/discussion/radiation-mask-decoration/

In some ways it could be a survival merit badge – “Yippee! I got blasted and survived.” At the same time, I’m sure some survivors look and it and just get depressed as it reminds them about their tumor and everything that went with it.

This is a picture of me wearing my radiation mask moments before being zapped. I thought you might enjoy initial reaction to being fitted for my mask (excerpted from Chief Complaint: Brain Tumor):  

“I was scheduled for my radiation blast. I say blast, because The Good Doctor, in consultation with the radiologist, decided that instead of five days of radiation, I should have one blast of five days’ worth of radiation. As I understood it, the five-in-one-blast had a better track record of preventing reoccurring tumor growth.

As soon as I heard this, I immediately thought of the original Uncle Fester from the Adams Family TV show. If you haven’t seen it, Uncle Fester could turn on a light bulb just by popping it into his mouth. Don’t think about it too much, it’s a sight gag.

I tried not to think about the radiation and then, on a fine summer morning, Barbara hustled my lazy butt over to the hospital for my radiation mask fitting.

In order to make sure that only The Blob was radiated and not, for example, my ability to play the trombone or killer beer pong, I needed to hold my head very, very still during the treatment. Since radiologists stay up nights worrying about things like sneezing during beaming, the remedy is to custom-build a face mask that will keep your head in a locked down position and as still as possible. So a week or so prior to my radiation blast, I went to the hospital and had a warm, pliable white plastic mesh form molded to my face.

The resulting face mask had six pre-drilled holes in it so that the technicians could, literally, bolt me down to the table to keep me from moving, fidgeting or picking my nose.

As soon as I put the mask on, I thought I looked like Anthony Hopkins from the movie, Silence of the Lambs. I wanted to wear the mask on Halloween because I thought it would scare the snot out of kids who were trick or treating.

(My wife) Barbara, of course, said “you can’t wear that; you’ll scare the snot out of little kids.” So I didn’t.”

If you want to read more, here’s a link to my website: http://www.chief-complaint.com/ 

And if you have picture you want to share, send them to me c/o John@chief-complaint.com.

Does Lumosity Work? (Kesler of Stanford says “yes”)

For starters, you should probably know that Lumosity– www.lumosity.com - is “a San Francisco-based company that provides an online brain training program, where subscribers play nearly 40 different games to improve attention, flexibility, memory and problem solving. It launched in 2007 and has about 40 million subscribers.”

Let me see, if the US population is roughly 320 million people, which means something like 12 – 13 % of us is training our brains on Lumosity which seems incredibly high…and it doesn’t count all the other online brain exercise programs out there like Cogmed (http://www.cogmed.com/) and PositScience (http://www.positscience.com/ ).

Shelli Kelser is a assistant professor of psychiatry and behavioral sciences and I read about her opinion in a nicely written DailyTech.com posting by Tiffany Kaiser: http://www.dailytech.com/article.aspx?newsid=31612. You should know that she, like me, is a Lumosity-addict.

Here’s the crux of Kaiser’s posting in response to the “Does it work?” question: “Shelli Kesler, assistant professor of psychiatry and behavioral sciences at Stanford University, seems to think it does.

Kesler recently led a Stanford study that aimed to measure how well Lumosity's brain training transferred into the real world. She used a small sample of 41 breast cancer patients who had been treated with chemotherapy. Past studies have shown that cancer patients who've undergone chemotherapy can experience cognitive impairment for years afterward.

The experimental group in the Stanford study played Lumosity games four times a week for 12 weeks, and results showed that they had improved word finding, executive function and processing speed over the control group.”

Using breast cancer victims as the experimental group strikes me as relevant for us brain tumor survivors. And, since I know several breast cancer chemotherapy survivors, I’m going to pass this on to them, too.