“'Benign' Does Not Mean 'Harmless' - Exploding the Myth Behind 'Benign' Brain Tumors”

That’s the title of an insightful and poignant article written by Emma Flixton and posted on the home page of It’s Just Benign: http://www.itsjustbenign.org/

Here’s the first paragraph: 

“The phrase ‘brain tumor’ brings panic and despair, the word ‘benign’ intense relief. So great is this sense of relief, in fact, that many people appear to equate the ‘benign’ status of a brain tumor with a declaration that the condition is nothing to worry about – or even with a sort of cure. The implication of the word ‘benign’ in many people’s view is that they no longer have to worry about and support the sufferer. This view fails to take into account that the symptoms which drove the sufferer to the doctor in the first place are usually still present, despite the tumor’s ‘benign’ status, and often still causing significant problems. Indeed, once a tumor is classified as benign, friends and family members who have previously supported the sufferer through their affliction may even come to think of the patient as a malingerer, making a mountain out of a molehill, and not in need of support. 

The prevailing ‘Oh, but it’s benign! You’re fine!’ attitude can be intensely frustrating for people who have to live with these supposedly ‘innocent’ brain tumors. Just because such tumors may not be immediately life-threatening (although some of them do, in fact, present a significant threat to life) does not mean that they are not life-affecting.”

 

To read the rest of the article go to the home page of http://www.itsjustbenign.org/ To read the article you’ll need to become a member and pay either the $25 annual fee or a lifetime fee of $75.

 In either case it’s a bargin, especially if you are a victim or caregiver or friend/relative of either.

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

“Surgery,” “resection,” “operation,” “brain operation” or “brain surgery”

Do those words scare the snot outa you? They scared the snot outa me. If your neurosurgeon just used these words in a conversation with you, or about a loved one, you might have had the snot scared out of you, too.

I wished I could have viewed this upcoming ABTA webinar prior to my surgery. I love the idea of sitting in the safety of your own home and lobbying in some questions about procedures, risks and recovery issues. The upcoming ABTA webinar  - entitled “Updates in Surgery & Surgical Techniques for Brain Tumor Patients” - sounds like it'll give you opportunities to do all of that and more.  

Here’s how their website - http://hope.abta.org/site/MessageViewer?em_id=26162.0&dlv_id=36661 - describes it: 

“Whether you use the word “surgery,” “resection,” “operation,” “brain operation” or “brain surgery,” surgery is usually the first step in treating most benign and many malignant tumors. It is often the preferred treatment when a tumor can be removed without unnecessary risk of neurological damage.  This webinar will discuss new imaging technologies, mapping and planning systems, navigational tools, and imaging devices used during surgery.  Presented by Ryan Barrett, DO, FACOS. Dr. Barrett is the Program Director for Neurosurgery Residency at Providence Hospital and Medical Centers. He is also a Clinical Assistant Professor at the Michigan State University College of Osteopathic Medicine.”

Here’s a link to the registration page: https://www3.gotomeeting.com/register/241485918

PS - Yes, I am and Spartan and “no” that didn’t have anything (Ok, not much) to do with this posting.

Tommy D.'s Brain Cancer stories on healtheo360.com

Tommy D has recorded a series of videos about his brain tumor journey. What I like best about his videos is his honesty about being in denial. In spite of several odd physical issues, e.g. walking into his desk several times an hour,  he continually tells himself and everybody around him that he’s “just fine” when, of course, he’s anything but fine. Here’s the link:

http://www.healtheo360.com/stories/brain-tumor-signs-and-symptoms/#.UgO-H5LCZOo

Happiness = Longer Life

One of the issues my brain tumor forced me to think about was my longevity. As I went into the operation fully aware that, while the odds were in my favor, I might not survive it.

And while I’ve survived, articles that give me ideas on how to live even longer are still of special interest to me.

The most recent one I read was by Dr. Gov Michaeli who was a professor at the University of California San Francisco before leaving to enter the world of biotech. He is now the founder and CEO of Madah Medica, an early stage biotech company developing products to improve post-surgical pain control.

He recently reported that “There are many studies showing a relationship between happiness and longevity, some of which are scientifically excellent.”

He went on to cite a study from the U.K. which tracked the happiness of 3,800 people ages 52 to 79 over time (yes, I fall in that age group). Here’s his synopsis of the findings of that study: 

“Happiness has been shown before to be a strong factor in longevity. But the magnitude of the effect uncovered in this study is truly surprising. Here they are:Five years on from their assessment, just 3.6 per cent of the happiest participants – those who had the highest positive affect – had died.
In contrast, some 4.6 per cent of those who were averagely happy and 7.3 per cent of the group with the lowest positive affect had died during the same time frame.”

Here’s a link to the article: http://www.thedoctorweighsin.com/give-thanks-be-happy-and-live-longer/

Who’s really sick? The fake cancer blogger

I never knew how many friends I had until I had a brain tumor. People called. Folks sent kind emails. Friends brought over massive amounts of food (five different kinds of chili). And friends watched me during my first few tentative days home from the hospital after my initial brain surgery (craniotomy) when I needed watching (and my wife had to go to work).

This included church friends, business friends, friend friends and family.  They all wanted to help, offered help and really did help.

The result was that I felt that somebody was feeding me really powerful emotional soup for the soul – soup packed with open and honest feelings of love, support, faith, caring and interest.

It was really, really powerful soup.

I suspect that the fake cancer blogger wanted to taste that soup.

What fake blogger? 

If you haven’t heard, a blogger was faking cancer and sending updates on her supposed health declines to Kalin Marie of the “Cancer is Hilarious” blog - http://cancerisnotfunny.blogspot.com/.  Kalin was diagnosed with a rare form of bone cancer called Ewing's Sarcoma. Kalin, who’s had a very, very tough time, was helping guide this faker through her medications, etc.

This is really wrong.

I feel like this cancer victim pretender wanted all the benefits of cancer – love and attention – without any of the pain and suffering.  This sounds to me like somebody who doesn’t have friends and family that would support them if they really were sick.

But I could be wrong.  The motivation would be much darker. It could also be somebody who loves to prey on the emotions of other – someone who enjoys getting others to relive their darkest days; said differently, an emotional vampire. 

I thought (hoped?) that this might be a isolated incident...boy, was I wrong.  Kalin lists links to a variety of cancer fakers...which I find utterly depressing. 

I just hope that Kalin continues her blog, continues to heal and continues to put this piece of nastiness behind her.