Another Beautiful Bad-Ass Brain Tumor Blogger: “The Everywhereist”

I love reading brain tumor blogs. I especially like blogs written by Beautiful Bad-Ass Brain Tumor Bloggers. One of my favorites is “The EveryWhereist.”

This is her post from June 27^th, 2012 - http://www.everywhereist.com/wtf-weds-i-have-a-brain-tumor-ive-named-it-steve/ 

It’s raw, sardonic, sarcastic, indulgent, scatological, stream-of-consciousness writing that makes you feel like she’s sitting across from you at a great coffee shop and doesn’t give a shit who hears her … because she knows she’s in the fight of her life with a relentless, deadly, diabolical brain tumor that is attacking her brain with all its force and venom and trickery.

The fact that she named her tumor “Steve,” is both hilarious and telling. If you read nothing else, read why she named her brain tumor “Steve.” (I named my tumor “The Blob.”)

John

PS - If you have a brain tumor blogger you love, send me a note.

“Doctors Object to High Cancer-Drug Prices” … And I Do Too!

If cancer doesn’t kill you, the cost of your oncology medicine might give you a heart attack.

That’s my takeaway from this article in the Wall Street Journal about the high cost of cancer-fighting drugs, the absurdly high cost of those drugs and profits pharmaceutical companies are making off of cancer victims and their families: http://www.wsj.com/articles/doctors-object-to-high-cancer-drug-prices-1437624060?mod=e2fb

According to a well-researched article by Jeanne Whalen, “More than 100 oncologists from top cancer hospitals around the U.S. have issued a harsh rebuke over soaring cancer-drug prices and called for new regulations to control them.

The physicians are the latest in a growing roster of objectors to drug prices. Critics from doctors to insurers to state Medicaid officials have voiced alarm about prescription drug prices, which rose more than 12% last year in the U.S., the biggest annual increase in a decade, according to the nation’s largest pharmacy-benefit manager.”

According to Whalen, “In an editorial published in the Mayo Clinic’s medical journal, the doctors focus attention on the financial burden to patients, saying the out-of-pocket costs are bankrupting many just as they’re fighting a deadly illness.

Patients ‘have to make difficult choices between spending their incomes [and liquidating assets] on potentially lifesaving therapies or forgoing treatment to provide for family necessities,’ the doctors write in Mayo Clinic Proceedings, a monthly peer-reviewed journal. 

As a result, about 10% to 20% of cancer patients don’t take their treatment as prescribed, the doctors say.”

Hmmm, let me think for a minute. I could take my cancer medicine which might save my life and bankrupt my family, or I could just forgo my medicine and die quicker and a bit more painfully - now that’s a choice which gives new meaning to the saying ”between the devil and the deep blue sea” (and in this case we know who the devil is).

To my way of thinking, this is another powerful argument for mandatory ethics classes in business school … not just offering them, but making them mandatory (and, perhaps requiring the final exam is administered with a lie detector machine attached).

If you are one of my non-U.S. readers, I’m sure this sounds more than strange, and you’re right.  Feel lucky that you don’t have our convoluted health-care system.

Here’s the quote that, to my way of thinking, nails the issue: “What we’re fighting is the greed. The greed and the additional maneuvering that is being exercised after you’ve already recouped what you’ve invested. There is no control, no regulation,” Ayalew Tefferi, a hematologist at Mayo Clinic and the first signator on the new editorial, said in an interview.

Precision Medicine Conference (Highlights)

I just read the “Precision Medicine Conference” highlights posted on the National Brain Tumor Society website: http://blog.braintumor.org/precision-medicine-conference-highlights/  and found myself hopeful, if confused.

I’m hopeful because the highlights sound surprisingly upbeat, positive and, well, optimistic. Why? Because (as best I can tell) we are starting to really leverage our understanding of the human genome as it relates to more effectively treating brain tumors.

Dr. Jennifer Helfer, PhD, explains this much more clearly in her conference recap by stating that  “Precision medicine, also referred to as personalized or individualized medicine, is defined on Wikipedia as ‘a medical model that proposes the customization of healthcare—with medical decisions, practices, and/or products being tailored to the individual patient.’"

Part of this introductory statement is still confusing to me – why is the idea of “medical decisions, practices and/or products being tailored to the individual patient” a radical/newsworthy idea? Haven’t we always been doing that? If not, why not?

As best I can tell, some of this stems from the importance of an individual  victim's genetics in addition to the tumor's classification, e.g. glioblastoma. Being able to research this linkage, according to Dr. Jeffrey Flier, Dean of the Harvard Medical School, is being led - somewhat strangely - by patients  who are “collecting and sharing their own medical information via sites like 23andMe" - https://www.23andme.com/

This information appears to give medical professionals better direction on how to treat patients’ individual and unique brain tumors. The challenge, it appears, is that more doctors need to become more familiar with this information in order to administer and interpret this genetic information.

If you do nothing else, watch this video entitled “Discovering the PD-1 Checkpoint: Winners of the 2014 William B. Coley Award for Tumor Immunology” - https://www.youtube.com/watch?v=B532URzuJOU

“You have a brain tumor”

These are five of the scariest words I know. I know this because I’ve had a doctor say them to me.

The ABTA has some pragmatically helpful advice on what to do after hearing this bad/horrific/terrifying news in a section on their website entitled “First Steps After Receiving a Brain Tumor Diagnosis.” - http://www.abta.org/brain-tumor-treatment/newly-diagnosed/?referrer=http://www.abta.org/

I can imagine writing this page was hard, because almost anything I’d write would be trite, scatological or particularly unprofessional. The ABTA, however, has some really good advice on:

•  Educating Yourself
• Seeking a Second Opinion
• Insurance (These dang tumors are costly!)
• Finding a Treatment Center
• Finding Support

Getting back to the importance of “Educating Yourself,” the ABTA website – www.abta.org - has tons of information on all of these topics.

I originally was told by my ophthalmologist who ordered up the MRI that revealed the tumor. Here’s my description of my reaction, excerpted from “Chief Complaint, Brain Tumor” - http://www.chief-complaint.com/

“The ride through the tree-lined streets of Chicago’s north shore suburbs to the ophthalmologist’s office, though, seemed longer that the four or five miles than it was. My memory of that ride was that we talked about everything except the reason for the ride—the nice fall weather, possible movies we should go to, and maybe the piles of leaves in the gutters above the third-floor attic.

But I knew that, this time, something was wrong, something that wouldn’t be easily fixed. My fear was that I had some horrible eye problem that would require surgery. My parents had both had cataract surgery and it sounded unnerving.

So I stewed on the idea of eye surgery (What else could it possibly be?) during the drive and, in the process, torqued my nerves so tight that I would’ve needed a socket wrench to loosen them.

We took an elevator up to the ophthalmologist’s office and, unlike previous visits, we were quickly shown into an examination room.

 

Almost immediately, the doctor entered the room and shut the door.

Then in a no-nonsense tone of voice he told us that I had a brain tumor and he could recommend a very good neurosurgeon.

My tongue tied itself up, then slightly loosened, and I sputtered out something like, “Brain tumor?”

I was stunned. I was shocked. I wasn’t even sure what a brain tumor was other than bad, very bad.

What do you say to somebody who’s just told you that your life is going

to change, for the worse? “Thanks for the really bad news?” “Please excuse

me while I start to freak out?” “Where’s the scotch? And not the Black Label, I want the really good Blue Label stuff!”

 

I have no real memory of what was said other than some comment about sending me to a neurosurgeon that specializes in brain tumors.

There was a painful discontinuity about hearing life-changing news on an absolutely beautiful autumn day. The warm fall weather hadn’t changed.

The streets were teeming with students who just escaped from grade school. But I had just heard the worst news I could ever remember hearing. And the only people who knew it were me, my wife, and the ophthalmologist’s medical team.”

If you have a description of that moment, the moment you learned you had a brain tumor that you’d like to share, just write it into the “Comments” section on this posting.