Wednesday, October 15, 2014
One would think that having a brain tumor would be bad enough, but having a YouTube hairstylist loose her hair due to chemo and radiation just seems like insult to injury.
I haven’t been quite so depressed since reading about Grant Achatz, the world-famous Chicago Restaurateur, having stage IV tongue cancer, or Sandra Marante, a young budding opera singer having a seizure during a rehearsal: http://johnstumor.blogspot.com/2012/03/truth-is-stranger-than-fictionits-also.html
Horribly, both Monroe and Marante are young, accomplished women who were full of promise and vitality and optimism.
The article in the Chicago Tribune, by Lolly Bowean, nicely captures all the horrible irony that hair loss for a nationally-known hair stylist commands.
Interested? If you’re not, I dare you to read the following opening sentences of Bowean's story and not be compelled to read the rest of article. Here’s the link: http://www.chicagotribune.com/news/ct-meechy-monroe-cancer-met-1007-20141011-story.html#page=1
“Over the last five years, Meechy Monroe has built a reputation and international following among black women who turned to her for hair care tips and inspiration as they turned from chemically treated hair to natural styles.
Through her blog, social media and YouTube channel, Monroe won tens of thousands of followers who longed to know just how she twisted, twirled, patted and puffed her signature, textured Afro into an elegant, bouffant-esque style. Her YouTube channel piled up more than 2.4 million views. She gained 36,000 followers on Instagram and reached thousands more through Twitter and her blog.
But recently, the 29-year-old West Pullman resident has been diagnosed with a rare brain tumor that affects just 1 percent of cancer patients in the U.S. The disease, along with the radiation and chemotherapy necessary to treat it, has changed everything for Monroe. She lost her ability to write clearly. Her speech became halting.
Added to those huge losses was another one: her hair, the glorious, dark black, curly mane that helped catapult her to icon status within the natural hair community.” (I made the last line bold because it is so ironic, although maybe “sardonic” is a better description.)
If nothing else, be sure to watch the video: http://www.chicagotribune.com/news/ct-meechy-monroe-cancer-met-1007-20141011-story.html#page=1
Monday, October 13, 2014
The doctor says “Glioblastoma, Stage IV.” Her answer: “Death with Dignity.”
It didn’t really happen that simply or easily or succinctly, but that’s the “’Cliff Notes” version of this particularly horrifying and public decision.
It drives me crazy when I read about somebody, especially a young somebody, has to make such a choice. I keep wondering when we will make a breakthrough in the treatment of GBM instead of minor, several month extensions of life expectancy.
In the meantime, I invite to read the People magazine article, Ms. Maynard’s thoughtful decision and her family’s heartfelt reaction … and be sure to watch the video which makes all these words I write seem so trite and shallow: http://www.people.com/article/Brittany-Maynard-death-with-dignity-compassion-choices
Monday, October 6, 2014
For those of you living in the US, last night's 60 Minutes' report of the incredibly high cost of cancer drugs about killed me: http://www.cbsnews.com/videos/the-cost-of-dying-end-of-life-care/
The episode reports that pharmaceutical companies operating in the US are charging exorbitant prices for new drugs that are no better than similar cancer drugs AND doctors get, essentially, kick-backs for prescribing these drugs.
The costs are so expensive that the families of these patients often blow their life’s savings or go into debt so that their loved ones can get these drugs.
And, to make matters even worse, the cancer drugs merely prolong the victim’s lives by months (not years) and do not cure the cancer (or almost never provide a cure).
Why hasn’t the government done something about this? Well they have, they made it legal for the big Pharma companies to do so. In fact, it’s the law.
It may be the law, but it’s immoral, underhanded and, in my opinion, evil.
You can read more here: http://www.cbsnews.com/news/93000-cancer-drug-how-much-is-a-life-worth/
Wednesday, October 1, 2014
When the American Brain Tumor Association announced an online webinar about the Ketogenic Diet, I realized that alternative medicine and the Ketogenic Diet have gone mainstream (at least for brain tumor patients).
I’ve been reluctant to jump on the Ketogenic bandwagon because I’ve read blog/victim posts about the diet working and about it not working. I also worry that some alternative medicines are being promoted without the scientific rigor and examination that traditional treatments have had.
At the same time, I also worry that traditional western medicine isn’t open to new or alternative or creative solutions to our ongoing brain tumor problem. In fact, Clifton Leaf’s wonderful book – “The Truth in Small Doses” – makes clear that our current system for evaluating new solutions for combating cancer is hugely flawed and practically shuns creative, out-of-the box solutions.
So if you’re a victim or caregiver or friend or family member affected by brain tumors, here’s the promotional blurb for the webinar:
“More and more patients and families are turning to integrative medicine to fight their brain tumor diagnosis. One such integrative treatment is the Ketogenic Diet. Join Leonora Renda, RDN, of University of Arizona Cancer Center at St. Joseph’s Hospital and Medical Center as she discusses what the Ketogenic diet is, how to achieve ketosis, the challenges associated with this specialty diet and the results that have been seen thus far in the research studies.”
You can read more about the webinar and sign up for it here: https://www3.gotomeeting.com/register/666442558
And here's a link to info about Clifton Leaf's book: http://www.amazon.com/Truth-Small-Doses-Losing-Cancer-/dp/1476739994/ref=sr_1_1?s=books&ie=UTF8&qid=1412177121&sr=1-1&keywords=the+truth+in+small+doses
Copyright: <a href='http://www.123rf.com/profile_radiantskies'>radiantskies / 123RF Stock Photo</a>
Monday, September 29, 2014
According to an article posted on Accelerate Brain Tumor Cure “Brain tumors fly under the radar of the body’s defense forces by coating their cells with extra amounts of a specific protein, new research shows.
Like a stealth fighter jet, the coating means the cells evade detection by the early-warning immune system that should detect and kill them. The stealth approach lets the tumors hide until it’s too late for the body to defeat them.”
Now that’s just unfair. We have a hard enough time killing the little buggers when we find them. And, disturbingly, these occur in “…some of the most dangerous brain tumors, called high grade malignant gliomas.”
Learning that lethal gliomas have stealth capacity is just another reason to sleep uneasily.
Here’s a link to the article I originally read: http://abc2.org/article/brain-tumors-fly-under-radar-stealth-jets-new-u-m-research-suggests
And here’s a link to the original abstract in the journal Cancer Research: http://cancerres.aacrjournals.org/content/early/2014/07/18/0008-5472.CAN-14-1203.abstract
Copyright: <a href='http://www.123rf.com/profile_pariwatlp'>pariwatlp / 123RF Stock Photo</a>