Archive for Cancer

Dec
26

Talking oncology

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just-onco-imageI had the opportunity to be a guest on This Week in Oncology’s weekly web radio show with Dr. Richard Just and Gregg Masters.

Enjoy!

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Apr
16

Pin THIS!

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#HAWMC Day 16: Pinterest!

Have a Pinterest page. Have yet to figger out its highest and best use, but today’s prompt tells me to create a board for my health focus and pin three things on it.

Well, in typical over-achiever fashion, I’ve pinned four images to my brand spanking new Health Activism board:

hawmc pinterest board image

 Why these images?

The one on the left is Buckminster Fuller at his best – don’t fight to create change, just create it.

The one left-center was shared last week on Day 9.

The one right-center is the ribbon I created for Team Plaid, my effort to drive discussion about early detection for all cancer. I am *so* not pink, or any other “one color” advocacy.

The one on the right is an example of the tattoo I’d happily get if it meant I’d never have to fill out another blinkin’ health history form.

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Apr
05

Lighten up. Take flight.

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I was almost 11 years old when my brother was born. I’m the one of the three of us (me, middle sis, little bro) who has had the biggest health adventure (cancer) … at least until early March of 2012.

One of my favorite memories of my brother as a little boy centers on a few-week stretch of time in the spring of ’69 when he was almost six, and I was about to turn 17. We were living in Coronado, the island village in San Diego Bay, on Alameda Avenue. The kitchen breakfast nook had a window that looked out on the driveway, and mom had put up a hummingbird feeder on the eave next to the window looking to attract some of the flock of hummingbirds that make the island home.

We hit the daily double that year.

The window sill was about five inches wide. There was an ample source of food – the feeder. A hummingbird pair seeking a perfect nest placement couldn’t do any better than that. We saw the nest at breakfast one morning – a small, perfect bowl for tiny hummingbird eggs – and my brother was riveted. Every morning, he would literally leap out of bed, race to the kitchen, drag a chair toward the window, and look to see if the eggs had hatched.

One morning they had.

We watched the hummingbird mom feed her chicks, we watched her give them flying lessons – a nail-biter series, trust me – and then we watched them all fly off to start the cycle themselves. Fly, mate, hatch, fly.

I had always liked watching hummingbirds. Since that spring, I’ve been in love with watching hummingbirds, because it brought back the memory of a little boy’s joy at watching a story unfold outside his window.

That little boy is now a man, the father of three fine sons and a fierce and lovely daughter, and husband to a remarkable woman whom we’ve long been glad we convinced to join our family (it was a team effort). He has always been healthy, has stayed in good shape, has enjoyed everything life has thrown his way.

And he faced a huge, out-of-the-blue challenge in March of this year, just shy of his 49th birthday.

Coming home from a business trip in San Antonio, he had a seizure in the airport. By the time his wife could get to Texas, the diagnosis had been determined: benign meningioma. Benign = good.

Well, mostly.

When, three weeks to the day after that airport seizure, they sawed open his skull to remove the tumor that the neurosurgeon had tagged as “massive”, they faced what was then tagged a “nasty, bloody mess”, and subsequently revealed as something that would have killed him within six months had it not been discovered.

Yay for seizures in airports.

Several hours later, he was in recovery, where his wife reported he was sarcastic. The following day he added perky snarkiness. No cognitive impairment there – he’s always been funny, snarky, and sarcastic.

Another of us has joined the ranks of engaged customers of healthcare. He made notes on some improvements to the monitoring gear he had to juggle to and from the bathroom while he was in the ICU – he was ambulatory, but literally festooned with telemetry devices.

He sang the praises of the hospital’s care team. He even praised the food. And he left the hospital four days later. He’s on the road – not a short one, but not a marathon either – to recovery.

I don’t know about him, but now when I see a hummingbird, I’ll see the joy on a little boy’s face … and the lightness of being that is now within that little-boy-now-a-man’s spirit at having dodged a bullet.

Life is sweet. Lighten up. Take flight.

Hummingbird

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Mar
27

Is it warm in here?

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I’ve been quiet for a while. Been doing my one-armed paper-hanger imitation – in a good way – which has taken up too much of my time and attention.

She’s baaaaaaaaack!

frustration reliefAnd she’s almost 4 months overdue for her annual mammogram. Yep, a breast cancer survivor is late for her mammo – but it isn’t due to lack of effort on her part.

Here’s the challenge: I have the money in hand for a diagnostic mammogram. However, there is *not* enough money in hand for a specialist visit to order said mammogram. And since your (not so) faithful correspondent here has no health insurance – thank you, cancer, you rat bastard – that’s a wrap.

My frustration is magnified by my certain knowledge that the reason the mammogram has to be *ordered* is that said order means that the insurance company will pay for it when it’s billed.

Of course, since I have no insurance, that’s why *I’m* paying for the mammogram. But I can’t get a mammogram, since there’s no order for said mammogram to ensure insurance payment for same.

Crazy yet? Yep, me too. I’m also totally steamed … which is why it’s warm in here.

We have created a healthcare payment system in the US that flies in the face of logic. I’m not the only one who thinks so, either. My buddy e-Patient Dave is banging away at some of the same issues as he tries to be a responsible healthcare customer. I’m on record with what I think are some valid health payment reform suggestions over on Disruptive Women in Health Care.

And then there’s the ever-epic Jonathan Rauch article in National Journal that became an also-epic YouTube video exploring the issue “If Air Travel Worked Like Health Care”. All I have to say is … GAH!

On both the get-a-mammogram issue, and on healthcare in general. As the Supremes hear oral arguments on what’s called either Obamacare or the Patient Protection and Affordable Care Act (depending on whether you think health insurance is something we all *should* buy for ourselves), it might be time for all of us to face some hard facts.

The most basic of which is: until we start acting like customers instead of meat puppets, the healthcare delivery system in this country will be stacked against access and transparency.

With me? Think I’m nuts? Spill your guts in a comment!

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Feb
13

Pink-icide: The Musical!

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OK, the post title is total hyperbole.

But don’t you think that the non-profit fist-fight that Komen has become deserves at least a song or two, if not a full treatment by the  “The Book of Mormon” boys Matt Stone and Trey Parker?

Maybe a musical episode on South Park? (Seriously, I can’t wait to see what Nancy Brinker looks like standing next to Cartman.)

Now that the furor has subsided, I have to say two things:

susan g komen race for the profits

(c) bellesouthblogs.com

#1: Komen is not about ending breast cancer, it’s about continuing Pink Ribbon Culture.

I wrote about the dust-up from a branding perspective on brandchannel.com, and most of what I have to say is included there. Komen shifted from grassroots to corporate entity when it became successful enough to feel like it needed to unleash the legal hounds to protect “pink” and “for the cure” from use by other non-profits and causes. #fail.

#2: Sorry, kids, but we told you so a while ago.

Gayle Sulik in “Pink Ribbon Blues”, KomenWatch, Lawsuits for the Cure – many of us have been asking “WTF, Komen?” for a while now. We have something like an answer after the Komen/Karen Handel fiasco: they’re not interested in the mission any more, they’re all about the Komen brand.

If you’re looking to spend some money on a good cause, forget buying pink gear. Write a check to the Canary Foundation or the Cancer Research Institute. Your dollars have a higher degree of likelihood to go to research, not legal expenses.

 

Categories : Cancer, e-patients, News
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