Wednesday, April 29, 2015
That’s the headline of a New York Times article by Emily Dwass about the misconception that a “benign” means, well, “benign”, as in “not causing death or serious injury” (according to the Merriam Webster online dictionary).
For meningioma brain tumor victims this is, of course, horseshit.
Dwass goes on to put a lie to that myth saying, “In the frightening world of brain a tumor, 'benign' is a good word to hear. But even a nonmalignant tumor can be dangerous — especially if, as in my case, it goes undetected, becoming a stealth invader.”
She goes on to talk about her initial diagnosis, operation and ongoing tumor troubles in her well-written article: http://well.blogs.nytimes.com/2015/04/27/the-brain-tumor-is-benign-but-threats-remain/?_r=0
For meningioma brain tumor sufferers, the insult to significant injury is that when you tell friends, family and business associates that you’re tumor is “benign”, they mistakenly think that you’re going to be all right, just as you were, normal.
One terrific website for victims and caregivers alike is http://www.itsjustbenign.org/ which connects benign brain tumor survivors and caregivers. If you read the survivor stories, you soon find yourselves learning about victims that can no longer work, that have parts of their body that no longer work or the hard work they endure every day just to eat, drink and sleep.
I also recommend that you read Liz Holzemer’s well-written book “Curveball: When Life Throws You a Brain Tumor.” You can read my review here: http://johnstumor.blogspot.com/2012/04/book-review-curveball-when-life-throws.html
Holzemer also started a terrific nonprofit entitled "Meningioma Mammas" whose mission is to provide support and resources to all those affected by meningioma brain tumors: http://www.meningiomamommas.com/
Unfortunately, I can state with the pain of experience that they are a serious pain-in-the-ass. Actually, that’s not quite correct; they’re more like a pain in the head. I’ve wrote about my own personal brain tumor in “Chief Complaint, Brain Tumor”. http://www.chief-complaint.com/
Saturday, April 18, 2015
What would you do if you were diagnosed with brain cancer?
I might crawl into a corner, curl up into a fetal position and moan a lot. I might walk into the nearest bar and order drinks until I couldn’t walk any more. I might go paragliding, because, what’s the worst that could happen?
Daniel Wang didn’t do any of these things. Instead, He used his brain tumor experience to draw greeting cards.
According to a poignant article by Amanda Marrazzo in the Chicago Tribune, Daniel started creating greeting cards with his colorful and cheery pencil drawings, and with the help of his business class instructor, Ryan Bruno he turned his artwork into a small business.
He donated all the proceeds from sales of his greeting cards to the Illinois-based “Make-A-Wish” foundation catering to the needs of children with “life-threatening medical conditions”. See http://wish.org/about-us/our-story
This is a kid who used his disease, his handicap to help others instead of wallowing in self-pity and anger.
I find this to be pretty inspiring, actions that made me believe that Daniel was more of a man than a struggling teenage.
If I ever have the ravenous and unbeatable brain cancer that Daniel had, I hope I have the grace and vision and power to be as giving as him.
Here’s a link to her well-written article: http://www.chicagotribune.com/suburbs/lake-county-news-sun/news/ct-daniel-wang-cancer-greeting-cards-met-20150414-story.html
And here’s a link to my original blog posting about his cards and his achievements when he was alive: http://johnstumor.blogspot.com/2014/05/hope-through-cards-young-brain-tumor.html