Archive for Cancer

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.

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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Jan
11

Calling all cancer warriors!

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million survivor march logo

(c) Kill the Beast LLC

There’s a wave building far out in the virtual sea. One that will drown out all other voices but those of 1 million cancer warriors marching on the National Mall in Washington DC on Sunday, June 3, 2012.

It’s an election year, kids. Let’s make enough noise to drown out what Calvin Trillin calls “the Sabbath Gasbags”, and get attention for our cause – one that touches every single American life in one way or another: cancer.

Let’s end it. Let’s put an end to death by cancer.

Here’s how to get on board the bus:

  • Contact me
  • Tell me how many warriors are in your group
  • Plan on being in Richmond by Saturday, June 2 so you can ride to DC with us on the Team Plaid Warrior Express, or
  • Meet us in DC on Sunday morning at our Early Detection Rally Roundup and join us as we storm the National Mall

The warriors who have kicked off this effort are:

Kill the Beast logo

(c) Kill the Beast

Donna Guinn Kaufman, head weapon-wielder at Kill the Beast who became a cancer warrior when diagnosed with breast cancer, while pregnant, a little over five years ago
pink sky at night cover

(c) Pink Sky at Night

Jennifer Salmon Melton, author of Pink Sky at Night, a remembrance of her father’s battle with lung cancer

 

and also on board to help make the Warrior Wave bigger than anything Washington has ever seen is Jennifer Stauss Windrum, the leading light of WTF Lung Cancer, who you’ve heard me sing out about here before.
WTF lung cancer logo

(c) WTF Lung Cancer

You on the bus? You better be!

COME ON!!!

Categories : Cancer, e-patients, News
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OK. The Month of Pink is over. Now it’s time to get serious.

November is Lung Cancer Awareness Month, the support ribbon is clear.

Get one thing perfectly clear: lung cancer is a killer.

Lung cancer kills more women than breast cancer does (see some CDC stats on that here), but we don’t see the NFL gearing up with lung cancer awareness gear.

Lung cancer has no brand. It also has no early detection protocols, so it’s usually discovered at the “if you survive, it’ll be a miracle” stage.

Where’s the funding for lung cancer?

That’s a question asked daily by my friend Jennifer Stauss Windrum via her awareness campaign, WTFLungCancer.com.

Her mom became one of the people fighting the lung cancer troll, which opened her eyes to the total lack of awareness of the risks and consequences of getting lung cancer.

  • Her mother never smoked. Most diagnoses are now people who don’t smoke: either never-smokers or former smokers. So stop thinking it’s the lung cancer patient’s fault. Even if they do smoke.
  • Lung cancer kills more people than the #2 through #5 most deadly cancers … combined. Lung cancer is #1-with-a-bullet on the deadliest list.
  • Lung cancer kills three times more men than prostate cancer.
  • Lung cancer kills more than twice as many women as breast cancer.
  • Lung cancer kills 437 people every day.

Worried yet? You should be.

What I suggest you do is get involved with the Lung Cancer Alliance. Support them, and support the Canary Foundation, too – they’re actively working on early detection research for lung cancer, and they’re my primary focus for TeamPlaid.

Have your home tested for radon – that’s the #2 identifiable risk factor for lung cancer after smoking. If someone in  your family does smoke, encourage them if they want to quit. If they don’t want to quit, make the inside of your house a smoke-free zone.

Make a difference in your own life by cutting down the risks. Make a difference in the community, and the world, by being 100% clear that lung cancer is a killer stalking each and every one of us: men, women, white, black, brown, rich, poor, smoker, non-smoker.

Everybody is at risk.

Let’s get to work.

The month of October is awash in pink. Everyone from the NFL to Panera Bread is on the pink bandwagon in support of breast cancer “awareness” – is awareness an end in itself?

Gayle Sulik, who I’ve mentioned before here, does a masterful job of ripping the lid off the damage that pinkwashing has done. Her book, Pink Ribbon Blues, is linked in the image on the right.

I think awareness alone falls very short of the goal if ending the disease is the goal. Unfortunately, I think that Susan G. Komen – and I’m talking the Houston mothership here, not the local chapters – is now much more about the brand than it is about the cure.

When it comes to “pink”, I see red. And I’m not alone.

Some stats (from cancer.org):

  • In 2005, the estimated mortality rate for breast cancer was 15% of those diagnosed with the disease
  • In 2007 (the year I was diagnosed), the estimated mortality rate was 17%
  • In 2009, the estimated mortality rate was 16%

Where’s the win here? If mortality rates are essentially holding steady, where’s the progress on “the cure”?

In the pink avalanche that is now the month of October, where is the discussion of the fact that the very products being pink-washed carry toxic substances with a link to cancer?

That includes the Avon Army of Women campaign (most Avon cosmetics contain paraben preservatives, which are estrogen mimickers that have been linked to breast cancer).

It also includes the Promise Me fragrance – also an Avon product – that has toluene and galaxolide in it, both of which are toxins. Read about them here.

There are a host of other regrettable “pink” products flacked in October, including Kentucky Fried Chicken (really?) and dairy products with rBGH, the growth hormone pumped into dairy cows that has in turn driven the rise in breast cancer diagnoses. Which hormone is, BTW, made by Eli Lilly, who also produces a number of breast cancer drugs. Talk about milking cancer!

And don’t get me started on the pinkwashing of the NFL. The pink gloves/cleats/dancing-ribbons-at-halftime do NOT mean that the NFL is giving one thin dime to Komen. It’s “awareness” – where’s the ****ing money, dudes? Don’t tell me it’s coming from the pink products being flacked on NFL team sites. The league keeps the lion’s share of that money.

Komen is a brand, it’s no longer a cause. They’ve started “lawsuits for the cure” – you can read my buddy Alicia Staley’s take on that here, which includes a good drill-down into the numbers. There is also a follow-up here, and you’ve really got to read the comments on both, which include a “harrumph” from the Director of  Communications at Komen, Andrea Rader.

If you want to support action to stop breast cancer – and other cancers – join the movement to cut down on environmental toxins, to end plastic food, to stop ingesting endless amounts of crap through our skin, our lungs, our mouths. It’s not just about cancer, it’s about the health of our entire community – the human community. On the whole dang planet.

I recommend Breast Cancer Action and the Breast Cancer Research Foundation if you’re passionate about ending breast cancer.

Stop buying makeup and skin care products with parabens and other toxins in them. You can get information on most products via SkinDeep, the Environmental Working Group‘s searchable cosmetics/skin care products database.

Stop eating food out of boxes, and introduce yourself to your stove. Cooking is easy, it’s fun, and it puts you more in touch with your family. Make time to cook together, you’ll be amazed at the conversations and communication that develop in the kitchen. Make trips to your local farmer’s markets a weekend excursion for the family.

And stop buying “pink”.

 

Categories : Cancer, e-patients, News
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I read, with a combination of amusement and rage, a conversation-via-post about healthcare information technology (HIT) between John Halamka, the CIO of Beth Israel Deaconess Hospital in Boston, and Ken Terry, the editor of FierceHealthIT. Halamka thinks that the rise of electronic medical records is the key to empowering both patients and healthcare providers toward more effective, efficiently-delivered care. He also thinks that the cloud – delivering software services via the web, and hosting system data on servers at scattered sites across a city, region, country, or the globe – will be the biggest driver of health IT innovation and use.

Terry thinks that Halamka’s overly optimistic.

I was moved to make a comment on Terry’s post – that was driven not by amusement, but by a touch of rage – regarding the fact that nowhere in his post did he address the patient. Who is the entire purpose of the exercise in healthcare, even if many people involved in medicine have forgotten that fact.

Halamka actually talks about patients as more than data points. Both Halamka and Kelly are HIT thought leaders, but I give Halamka the win here because he sees patients as both the purpose of the exercise (healthcare) and as the central driver of HIT development and adoption.

As patients, we have to add our voices to the chorus. We must storm the HIT Bastille, demanding secure access to our data, control over who sees it, a say in who are providers are.

Only when patients are truly empowered – and we’ve got to take that power, not wait for someone to give us permission – will healthcare really be transformed into an industry that serves all the players involved in its process. Engaged, empowered patients are more likely to do what their healthcare providers recommend, because they’re truly communicating with each other.

Safety and cost controls will be meaningful because the patient and provider are directly connected as a team working toward the best possible outcome.

Where we are now? To this patient, it feels like the 7th, 8th, and 9th circles of Dante’s hell, all at once.

Please click this link for a bit of humor – infused with just the right touch of irony and rage – that illustrates my point (embedding isn’t working right now … GoDaddy got up and went?)

LET US IN, otherwise the system will remain broken.

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