Friday, August 31, 2012

More on Fake Cancer Victims



I just read Kaylin Andres’ most recent blog regarding cancer fakers, i.e. losers who pretend to have cancer to get sympathy/attention/etc. That she has to give advice on how to spot cancer hoaxers makes my head hurt _____ (insert your own bon mot). 



As usual, she writes with passion and angst and horror about all this. Here’s a link to her site: http://cancerisnotfunny.blogspot.com/  If you go there, be sure to read the comments posted on that blog posting.

Kaylin also posted a link to a posting by Adrian Chen, who notes that cancer hoaxes aren’t particularly new. They’ve been around for years. His article/story, The Long, Fake Life of J.S. Dirr: A Decade-Long Internet Cancer Hoax Unravels, is illuminating and depressing. You can read it here: http://gawker.com/5914621/the-long-fake-life-of-js-dirr-a-decade+long-internet-cancer-hoax-unravels/

Tuesday, August 28, 2012

Punching the Bucket List


Yes, we did. My wife and I went to the Olympics (don’t tell the kids that their inheritance has shrunk significantly).

We went for two reasons. First, we love the Olympics, all of it. We love the pageantry, the events, the camaraderie and the multinational environment.

The second reason is that, given my recent health history, we thought that seeing the Olympics sooner than later was a good thing.

I felt even better about going this year when I heard Mark D. Johnson (M.D., Ph.D., Department of Neurosurgery, Brigham and Women’s Hospital/Harvard Medical School) speak at the recent ABTA conference. My notes tell me that he said that meningioma tumors reoccur in about 10 – 15% of the cases. I am not crazy about those odds as I have a medical history of snatching defeat from the gaping jaws of victory.

I then visited the ABTA site and read that “multiple meningiomas occur in 5% to 15% of patients”, which is only slightly lower than my little league batting average.  (Ok, this is a lie.  My little league batting average was a lot lower.)

After mulling all that over, my sense is that those of us battling serious illness of any shape and size should do a bit more carpe diem. I have no idea what the future holds, but I’m convinced that now is not the time to put off taking that vacation we’ve been lusting over for years, visiting that restaurant we’d love to visit except that it costs mucho buckeroos or calling my old roommate with health problems whom I haven’t called in way too long.

I am trying, with limited success, to enjoy every day for what it is because I know that one day, the days won’t be that enjoyable.

John

PS – Yes, we’ve already booked next year’s vacation.

Thursday, August 23, 2012

Asparagus & Cancer


One of the more interesting sections of the Qi (Gong) Revolution seminar that I attended was the sessions on food. One of the most provocative assertions in that session was regarding the important health benefits of asparagus for cancer patients.

So I opened up my trusty browser and started to read about asparagus and cancer.  I learned that this is a hot topic. A nice debate about asparagus can be found on the ABTA’s Inspire website @ https://www.inspire.com/groups/lung-cancer-survivors/discussion/could-be-good-asparagus-glutathione-anticarcinogen-antioxidant/ You do, however, have to register to read the discussion string.

As best I can sort out, a core issue stems from the fact that asparagus is a good source of glutathione, which some believe is a really power antioxidant as well as a substance that acts as an immune system booster, and a detoxifier. And that’s just for starters. There are also claims that glutathione can help your body repair damage caused by stress, pollution, radiation, infection, drugs, poor diet, aging, injury, trauma, and burns.

Phew! That’s a lotta work for a thin stalk of green.

Ok, so what is glutathione? "Glutathione is a very interesting, very small molecule that's [produced by the body and] found in every cell," says Gustavo Bounous, MD, director of research and development at Immunotec and a retired professor of surgery at McGill University in Montreal, Canada. "It's the (body's) most important antioxidant because it's within the cell."

And here’s a somewhat old, but reasoned discussion of all this from MedicineNet.com: http://www.medicinenet.com/script/main/art.asp?articlekey=50746

In terms of relevance for brain tumor folks, I’m constantly reminded of Barbara Strauch and her well-researched book entitled The Secret Life of the GROWN-UP Brain in which she points out that “For years, scientists believed diet had little impact on our brains because they thought most nutrients didn’t cross the blood-brain barrier.”

After reading all this I’ve decided not to take any supplements. I will, though, look to eat asparagus more regularly.

Tuesday, August 21, 2012

I Got Qi Gonged

Yes, it’s true. I went to the Qi Revolution seminar - http://www.qirevolution.com/ - with my sister in Schaumburg, IL last Saturday and Sunday.

The first response I get after telling my grounded, highly skeptical Midwestern friends is “Do you need an intervention?”  Without fail I emphatically tell them, “no yet.”

Assuming that they don’t turn around and run out of the room after hearing that I went to the seminar, the next questions tend to be:

What is Qi Gong?
Why did you go?
Did you learn anything useful? And…
Did it hurt?

Here’s some answers:

What is it?
According to Wikipedia (the source of all true, factual knowledge) Qigong “… is a practice of aligning breath, movement, and awareness for exercise, healing, and meditation. With roots in Chinese medicine, martial arts, and philosophy, qigong is traditionally viewed as a practice to cultivate and balance qi (chi) or what has been translated as ‘intrinsic life energy.’ Typically a qigong practice involves rhythmic breathing coordinated with slow stylized repetition of fluid movement, a calm mindful state, and visualization of guiding qi through the body. Qigong is now practiced throughout China and worldwide, and is considered by some to be exercise, and by others to be a type of alternative medicine or meditative practice."

Why did I go?
I went because my sister attended the session so she could earn some “continuing education units” and keep her Doctor of Oriental Medicine license up-to-date.

Did I learn anything useful? (Part 1)
Yes. I learned that the Qi Gong movements look easy and, especially after the first very basic protocols, are challenging. A big part of the practice is moving slowly which, for me, is much harder than moving faster. Said differently, my form was lousy. Did I get a huge burst of energy? Hmmm, not really. Was I able to have enough energy to not eat lunch until 2:00 pm on the second day without becoming really grumpy?  Yes, and that was a miracle.

I think a key point is that the head instructor, Jeff Primack, describes Qi Gong as a method of improving accelerating your metabolism and blood circulation. If it accomplishes that, it’s worth the effort.

Did I learn anything useful? (Part 2)
For me the most interesting piece was the discussion about using food to preempt/address diseases, including cancer.  I’ll recap that in my next posting.

PS – On the “Did it hurt?” question I have to say that since I wrenched my shoulder before going, I expected it to really hurt and it didn’t.

PPS – Am I glad I went?  Strangely, yes.

Monday, August 20, 2012

I want to be a “superager”!


According to an article by in last Friday’s Chicago Tribune, Northwestern University has conducted an interesting research study among “superagers.” The article states that Superagers are “…someone who continues to function at a high cognitive level even as most people her age see their memories recede.”

The article includes a short profile of Barb Shaeffer, 85, (see photo above) of Chicago, who “…does two crossword puzzles every morning. She often completes an entire book on her Kindle in a day and is preparing for her three fall classes, one of which she co-teaches, through a Northwestern University program for retirees. (Heather Charles, Chicago Tribune)

Smith notes that “Northwestern University researchers examined 12 such superagers from the Chicago area, ages 80 to 90, and found that the cortex of their brains — a region important for cognition — looked more like a middle-aged person's than an average octogenarian's.”

The article quotes Emily Rogalski, a Northwestern professor on the research team, who said that "A lot of studies are figuring out what's going wrong with the brain. We hope by identifying what's going right with the brain that we can … develop strategies for avoiding disease and disability."

I like to think that my mother, who does the crossword puzzle every day, and my father, who is hooked on “Great Lecture” CDs, would both be good candidates for their study.


And here’s a link to the research study abstract from the Journal of the International Neuropsychological Society: http://journals.cambridge.org/action/displayAbstract?aid=8656556  

Friday, August 17, 2012

Rosie the Rock Star

I had the good fortune (in more ways than one) to present at the American Brain Tumor Association’s Patient & Family Conference “Survivor Stories” session (yes, that’s a mouthful).

Perhaps the most inspiring presentation was by JoAnne Colucci about her daughter Rosie who is seven years old.

At the conference I learned that Rosie’s main brain tumor is a hypothalmic/chiasm optic glioma.  It is an inoperable brain tumor located in the center of the brain and causes all sorts of problems. 

Sounds pretty formidable? Take a seat, the list has just started.  She also has central precocious puberty (CPP), pituitary gigantism, optic nerve atrophy, acquired obstructive hydrocephalus, neurofibromatosis and hypertension.

As a result, she’s had chemo at least 142 times and roughly upteen surgeries (i.e. a lot).

Here’s the kicker: she’s ridiculously upbeat. From everything her Mom said, she’s a happy kid. If you ask, and even if you don’t, she’ll do a rap about her condition. She speaks to audiences large and small. On top of that she raises $$ for charity. Last year she and her sister raised $25,000 for the Chicago Dance Marathon which does to the Children’s Falk Brain Tumor Center at Children’s Memorial Hospital in Chicago which is where Rosie goes for her brain cancer treatments.

Want to learn more? Want to donate to one of her charities? Here’s a link to her website: http://www.research4rosie.com/TheJourney.html

Wednesday, August 15, 2012

I’m in the wrong 1%

I attended the American Brain tumor Association’s “Patient & Family Conference” which was held here in Illinois July 27th through 29th

One of the breakout sessions I attended was “Meningiomas, Pituitary and Other Benign Tumors: Update in Treatment, Care and “”Watch and Wait.”
The presenter was Mark Johnson, MD, PhD; Harvard Medical School/Brigham & Women’s Hospital (phew, I get tired just typing all that).

In his presentation, which was as eloquent as it was grounded, my notes, I have this memory of Mr. Johnson stating that 1% of all Americans* have a benign brain tumor.

Now my notes and memory have a reputation for being not always being 100% accurate, so don’t panic. But, then again, I’m panicked; this seems more like an epidemic than a rare yet devastating disease. If the incident rate is 1%, even if much of that 1% is so small and unobtrusive that folks don’t know that they have them, it seems like we as a nation should know more about meningiomas: why we get them, how to prevent getting them and how to cure them. Actually it’d be nice to know more about all that even if it isn’t an epidemic.

I then read the synopsis of an article in the British Journal of Cancer from June 24, 2008 which stated that “In the United States, the incidence rates with similar age-standardisation estimated from figures provided by the Central Brain Tumor Registry of the United States were 1.8 for men and 4.2 per 100000 for women in 2006.” http://www.nature.com/bjc/journal/v99/n1/full/6604438a.html#bib5

That incident rate seems more in line with what I remembered, but I still found the discrepancy confusing and, at some level, disturbing.  So I went to the ABTA site which said that “Meningiomas account for about 20% of all primary brain tumors…”

I then checked my notes from Mr. Johnson’s presentation. Yep, I wrote down that he said that meningiomas represent 34.7% of all brain tumors. And, of course, that 34.7% seems awfully close to what I remember it being.

Arghh, I gave up.

In either case, the odds of getting meningioma are a bit like winning the lottery, only it’s a lottery you don’t want to win.

*His statement was probably couched in some smart way, e.g. “it is now believed…” or “we now estimate…” or even “John, please pay closer attention.”