Archive for Cancer
Calling all cancer warriors!
Posted by: | Comments
(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:
(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
(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.
(c) WTF Lung Cancer
You on the bus? You better be!
COME ON!!!
November: forget pink, go clear! #lungcancer
Posted by: | CommentsOK. 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.
It’s the month of “pink” + I’m seeing red
Posted by: | Comments
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.
- 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”.
Dear Health IT geeks: LET PATIENTS IN. Please.
Posted by: | CommentsI 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.
While we’re talking food …
Posted by: | CommentsI know that this is Week 3 of Foodierama here in Cancer-for-Christmas-land. I’ve been accused of being food obsessed before, so it is what it is.
Yesterday, as I ranged around seeking wi-fi in the aftermath of Irene’s blowdown of the power lines connecting me with the volts necessary for my at-home office, I listened to Fresh Air with Terry Gross. The episode was an interview with Grant Achatz, molecular-gastronomy rock star and chef at Chicago’s Alinea, who among other things has won the James Beard Award and landed 3-count-’em-3 stars in the Chicago edition of the Michelin Guide.
He’s also a guy who beat Stage IV tongue cancer. He talks about both of these achievements in his book Life, on the Line: A Chef’s Story of Chasing Greatness, Facing Death, and Redefining the Way We Eat (the link will take you to the book’s page on Amazon.com). As I listened, I found myself thinking about my recent post about the choice that Anna Stoessinger was forced to make after a stomach cancer diagnosis, and also about the aftermath that Roger Ebert faced after repeated surgeries to treat thyroid cancer left him disfigured, mute, and unable to ingest anything by mouth.
Maybe we can blame Chicago for at least two-thirds of this epic epicurean destruction? Kidding.
Grant Achatz traveled to New York seeking medical treatment – he was told that the best approach was to surgically remove his tongue and all the lymph nodes in his neck, followed by aggressive chemo and radiation treatment. They would try to replace his tongue with muscle tissue from elsewhere in his body. He was told that this treatment protocol would maybe buy him another few years of life.
He took that message home to Chicago, and discovered that there was a clinical trial at the University of Chicago that turned the traditional treatment dance on its head: aggressive chemo and radiation treatment, no surgery. This approach would burn the **** out of his tongue, and make him sick as a dog, but in the face of a “you’ve got Stage IV” diagnosis, he went for it.
Remember, he’s a world-renowned chef whose entire career has been about playing with flavor and texture. The treatment completely killed his sense of taste, and much of his appetite. But … it came back. Happily, the cancer did not. And he’s been cancer-free since late 2007.
If you take nothing else from this story, take this: don’t take any one doctor’s word for it. Whatever “it” is. Seek at least one other opinion, and if you’re facing some really scary stuff, get a few. And go with the one that gives you the most hope with the best provider possible.
Be informed, be your own advocate, and then surrender to the process.
And let’s all plan a trip to Chicago sometime soon, including reservations at Alinea. I personally can’t WAIT.
What could you live without?
Posted by: | CommentsIf you had to live without something, what would you choose?
And if you didn’t have a choice, how would you handle that forced forgoing with grace?
An op-ed in the NY Times is making a big noise in the health blogosphere, and is – in my opinion, at least – an essential story about how to be an e-patient, even in the most challenging circumstances.
Anna Stoessinger, a freelance advertising writer in New York, is a life-long foodie. In her opening line, she refers to herself as a “ravenous” eater, one that friends and family have compared to a wolf at the dinner table. She grew up grabbing gastronomic getaways with her mom – close to home, and as far as southern France – where they would savor a cascade of gustatory delights ranging from roadside cheeseburgers in Connecticut to filet of sole in the south of France.
Her recent marriage, to a man whose appetite for epicurean exploration matched hers, was only 10 months old when the case of heartburn she thought she’d brought back from Italy turned out to be a tumor: stomach cancer. Adding to the impact of that discovery was her doctor’s revelation that she’d lose her entire stomach – a gastrectomy – to ensure the cancer troll was defeated.
What could you live without if you had to? What would you sacrifice in order to stay alive, what defines your quality of life?
This is a question that millions of people face every day, as they weigh treatment options for a variety of diseases and conditions. From cancer to ALS, from congestive heart failure to sarcoidosis, patients are often forced to make choices that take something they love off the table. Forever.
Ask yourself what you could give up, and what could make you decide to forgo treatment for a life-threatening disease. That’s just the sort of “worst case scenario” planning that helps you make informed decisions about your medical care.
Diagnostic information is only half of the information making up a decision tree. The other 50% is your history, your knowledge of yourself, your sense of what makes your life livable, your vision for what makes your life yours.
Life is more than existence. But what you think is the central feature of your quality of life might be able to take some slings and arrows from that outrageous fortune b*tch and still live to fight another day. Enjoying the tastes, the touches, the experiences that remain.
Think about it: what could you live without?
If laughter is the best medicine …
Posted by: | CommentsWhy aren’t doctors telling more jokes?
I asked that question as an aside over on the Mighty Casey Media blog earlier this week. We’re all about the comedy here at MCM. That, and the self-referencing that is “meta.”
Hey, a grrl’s gotta build links somehow, right?
Back to the topic at hand: laughter, its potential to heal, and its place in healthcare.
I know from hard personal experience – cancer for Christmas, remember? – that laughing in the face of adversity makes you feel more like you can deal. With illness, with financial setbacks (How much easier to manage would the recent debt-ceiling bitch-fest have been if they’d been trying to crack each other up, rather than beating each other over the head? Just asking. ), with family trauma, with pretty much any sling or arrow of outrageous fortune – nothing can’t be softened by a good belly laugh.
That’s truth, not conjecture.
The first time I remember seeing/hearing the phrase “laughter, the best medicine” was in Reader’s Digest, when I was a grade-school kid just learning how to read past “see Jane & Dick run.” It made perfect sense to a seven year old – I always felt better after a good laugh.
None of the doctors I’d met to that point seemed to have the same philosophy, and my experience since then hasn’t revealed any hidden comedy gold in the MD zone. Other than Ken Jeong. Medical care itself can be funnier than ****, considering the positions and situations we find ourselves in.
Stirrups. Hospital gowns. Turn your head and cough. They’ve got a million of ‘em.
Here’s my proposition: let’s help our healthcare providers, and ourselves, find the funny. I’m not suggesting that you prepare a five-minute standup set for your next annual physical – since your GP only has about seven minutes to spend with you, you want to keep it short and tight! – but encouraging the healthcare providers in your life to look at you, and laugh with you, will make a huge difference.
Really.
It will make them see your humanity, and help them connect with their own. In the most dire of situations, if you can laugh – particularly with your medical team – you’re building a pathway to healing. Try it. Even if you’re dealing with a chronic – or a terminal – illness, helping yourself move toward the lightness that laughter brings can make dealing with the most sucky of circumstances possible.
Try it. And let me know what kind of difference it makes.
The Big C: Laugh. Learn. LIVE.
Posted by: | CommentsI admit that my default in all things is “first, you laugh.” It’s a lot easier to laugh than to scream. Plus, it hurts less.
So it will come as no surprise to you that I’m a big fan of Showtime’s The Big C.
I bring this up because the cancer that Cathy Jamison is battling is one that gets very little attention in this very pink world: melanoma.
Melanoma is the fifth most common cancer diagnosed in the US, behind prostate (#1), breast (#2), lung (#3 and rising), and colon/rectal (#4) cancers.
When was the last time you heard of an awareness campaign for melanoma? Or saw someone wearing the black melanoma awareness ribbon?
BTW, how telling is it that the melanoma ribbon is black? Too often, melanoma goes unnoticed until it’s reached an advanced stage – like Cathy Jamison’s Stage IV diagnosis. At any stage, the treatment can be pretty draconian: wide-excision surgery and radiation at the least, with chemo and/or interferon added at more advanced stages.
If you’ve got skin, you’re at risk for melanoma. If you’ve got white skin, your risk is higher. Every time you put on a bathing suit, ask a family member or friend to take a look at the parts of your skin you can’t see easily. Follow the A/B/C/D/E guidelines (click the link to see the list), and if you see anything suspicious, make an appointment to see your family doctor.
Laugh. Learn. LIVE.
