Women with Cancer

When the Medium Was the Message

2012-01-20T08:35:00.001-06:00

Bill Weir of ABC-News

Let's getthis straight: I like Bill Weir. He co-anchors NIGHTLINE and histongue-in-cheek features often leave me laughing.

But Tuesday night Bill Weir inadvertently went fromwriting about to becoming the subject of the latest,hot-off-the-press celebrity doctor book to hit The New York Times bestseller listin 7:06 minutes, the length of the story.

For the entire week in fact, ABC-News has provided DavidAgus, MD, a media platform unrivaled by the introduction of any other medicalbook that I can remember. Is it ratings week? Publicists must be soaking inchampagne. While Weir called the Agus book “the most anticipated medical bookof the year,” what I heard was a well-respected physician telling an old storyin a new way that is a lot more expensive.

Ask any doctor or advocate: making prevention sexyis the hardest job in town.

In Weir's case, the calamity prevented was apotentially fatal heart attack. The diagnostic testing he underwent as part of hisassignment (at the request of Dr. Agus) revealed a "calcification in thelargest artery leading to the heart." That’s a walking time bomb. I'mnot knocking the prevention message. Neither are the hundreds and thousands ofother internists, family practitioners, and other professionals who findthemselves saying the same thing, in different ways, day in and day out. Foryears. Maybe the ABC story will reach the ears of other 40-year old men who,like Weir, considered yearly check-ups a great idea for anyone but them.

But I'm not convinced. His story, compelling from anemotional standpoint but low on fact, had an amazing infomercial quality. Theprevention aspect really wasn't about prevention at all. It was about the earlydetection of disease using "cutting-edge" (read expensive)technology. This is not the kind of health reporting we need. Here's why:

TheCelebrity Factor - the "rock star of science" physician.

BothDiane Sawyer and Bill Weir both were quick to point out that Dr. Agus hadconsulted with Lance Armstrong and Ted Kennedy and as Weir stated, “… keptSteve Jobs alive years beyond what anyone thought was possible."

Stop right there. Lance, Ted and Steve. Notyour everyday individuals. Not your everyday, readily preventable cancers,either. As far as I know there is NO prevention, not to mention earlydetection, for glioblastoma, the lethal form of brain cancer that claimedSenator Kennedy's life. Perhaps there’ssome combination of blood markers that’s detailed in the book but this smalland obviously intentional mention of the three famous patients propagatesexisting disparities in our medical system.

One of the secret fears of any person with alife-threatening illness is that somehow, somewhere, there's some treatmentthat's better than what they can access or afford. To this end too many trollthe internet, buying vitamins, supplements, treatments and other 'cures' fromquack doctors and companies. Thousands of people who are perfectly healthy dothe same thing in the hope of slowing aging or enhancing athletic performance. Thereare too many people who think that anyone who puts up a professional-looking webpage with the MD tagging along after their name is a "rock star doctor."Do you think I’m exaggerating? Hangaround Twitter for a day and watch what people are buying, thinking and doingas part of a ‘healthy’ lifestyle.

The best doctors are those whopartner with you. That’s the new health equation. The NIGHTLINEpiece mistakenly leaves the impression that big doctor, big technology leads tobig health when in fact, the opposite is just as true. The accretion ofeveryday choices, how much we move, what we eat, what we do and do not do, evenhow we think combined yes, with good technology and medical guidance can leadto good health for many.

Ultimately, the real ‘rock stardoctors’ don't have time for television interviews. That doesn't make them anyless than those on the best seller lists. They are the ones, who, often late atnight, answer emails from patients who aren't even theirs just to set someonestraight.

WhatDidn't Meet the Eye

Anytimeyou hear the phrase "cutting edge technology" in health care stories takea deep breath. Cutting edge usually means procedures your insurance carrier isbound to deny -- unless Medicare decides to cover it first. Then your carrierwill eventually follow suit.

"The unfortunate truth is that you dohave some heart disease now," Dr. Agus tells Bill Weir early on in thepiece. That's the pivotal moment. The reporter’s face freezes. All of us withcancer have had the same deer-in-the-headlights moment. It's awful. Yourstomach curls. That's also the moment when the reporter’s fact-findingquestions vaporize. Once the reporter is the story perspectiveis gone. Now we’re sharing BillWeir’s encounter with mortality. We feel badly for him. We feel badly that hisfather died and truly, we DON'T want his daughter to become an orphan. In a rapid flash we’ve seen photos of all ofthem.

That's television. You become so involved in storythat logical questions fade. Just a few of those questions are:

would a large calcification in a major artery been detected in a routine annual exam?
Was/is there a history of heart disease in Bill Weir’s family? Doesn't ABC-News require - or encourage - its employees and key players to undergo wellness tests? Better yet, does yours? Or do you have your own wellness plan in place?
And finally, what can you do when people feel they are invincible? Very few are reporters who were asked (and allowed) by their network to undergo tests totaling thousands of dollars as part of a week-long feature called, The End of Illness. Amazingly, this also happens to be the title of David Agus’s book.

TheElephant in the Room

The elephant, which I should have seen coming beforeshe walked right over me, was the DNA testing company founded by Dr. Agus in2006 that provided some of Weir’s testing. Whether or not the DNA analysis ledto the CT scan or not wasn’t clear. Whether the DNA analysis indicated anythingelse to prevent other than the big blob in Bill’s artery wasn’t clear. Theprice of the combined tests, not to mention the entire topic of DNA analysis,certainly wasn’t clear. It was ‘good television’ but certainly not goodreporting.

People deserve better. They deservereporters and producers who read between the lines. I can point out hundreds ofcancer survivors who did everything right and were diagnosed with canceranyway. Their perspectives on “the new this” or “the new that” is occasionallyand understandably jaded. What needs tobe evaluated is of what use this information be to them now. We need to focuson preventing the next cancer, which may or may not be something subjectto our control. And there’s the ultimateillusion: that technology can help us control everything.

Maybe. Maybe not. Can NAVIGENICS’s cutting edge DNA analysis tell me, or anyoneelse, if there’s an errant genetic blip just waiting kick off cancer again?Would the good measures I already have in place change a genetic reality oneiota?

Staytuned. I downloaded The End to Illness faster than youcan say jack rabbit. I’m about to go seefor myself.

Inthe meantime, I’ll repeat what Dr. Agus told Bill Weir, “Real food, regularschedule, live healthy.”

And Happy New Year.

###

The Space Between

2012-01-12T12:57:00.000-06:00

From: National Geographic.

Over the holiday I had the opportunity to join my friend's yoga class. She's such a good teacher that I transformed from feeling like a Christmas sausage into a sinuous being capable of anything.

Yes, she's that good. My feet were grounded. I could feel energy gripping the mat through my heels and better yet, extending up through my core, through the density of interlaced scars and knotted tissue in my chest wall. There was a clean, clear stream line flowing along my arm that went through to the fingertips. And out.

As we slowed and folded into a meditative pose she suggested that we consider the space between breaths. Concentrate, she said, on the space between.

The space between. The phrase still resonates. I was like a child with a new toy, calling the words up and considering them or waiting, as they did one cold, crisp evening, to settle in my consciousness on their own accord. For every time those words land a sense of calm follows.

The phrase works from the literal to the figurative. The space between is that glorious recess between Christmas and New Year's when the big events of the past year crystallize. The space between is a constant ebb and flow of life, as we navigate one day to the next, one challenge after another.

For cancer survivors the space between can be highly charged or restorative. The space between can be time in between one treatment to the next. As Debbie Thomas wrote last week, it can be the time we need to to adjust, to reframe our identity from being a patient to being a "normal" working woman again.

Cancer nipped my family badly this past year. There are times I suspect it will always be around, breathing down our necks. There were wounds and losses, recoveries and grief. The space between was an unexpected gift to me, to find my way with those losses, and discover my own way again. I hope you can find your space, too.

Wishing you love and all good things in this New Year,
Jody

Bolero Isn't Just About Fashion Anymore

2011-12-07T18:29:00.001-06:00

For certain women withmetastatic breast cancer, a bolero is no longer a fashion accessory butgreat news about a potentially life-prolonging cancer treatment.

Results ofthe international BOLERO-2 trial (Breast Cancer Trials of Oral Everolimus) releasedyesterday at the San Antonio Breast Cancer Symposium and discussed in a pressbriefing this morning show that the combination of everolimus (Afinitor/Novaris)and exemestane (Aromisin/Pfizer) represents a “new standard of care” in womenwith hormone resistant, metastatic breast cancer. These women, whose cancer is fueled by theestrogen, have disease that has advanced despite previous treatment withendocrine and/or chemotherapy.

This is good news from a number ofangles:

1) Both are oral medications.

2) The new strategy delivers a “smartbomb” that specifically interrupts the molecular pathways involved in drugresistance. It continues the evolution in treatment that digs deeper into thebiological mechanisms of the cell with each new generation of medications.

3) The everolimus/exemestanecombination kept the cancer at bay for a median of 7.4 months compared to the3.2 months for those who took exemestane alone with “modest addition oftoxicity.” Those side effects, higher inthe group with the drug combination, include shortness of breath,hyperglycemia, mouth sores and fatigue.

On theAmerican Cancer Society Blog Len Lichtenfeld, M.D. wrote, “This studysuggests that researchers could indeed produce remarkable results by rationallydesigning a treatment approach based on science where the hormone resistancewas turned off and allowed a different hormone therapy to effectively treat the disease.”

Rationaldesign. Elegant design. You hear these phrases attached to the largerand more significant trials. It’s thesame principle as garbage in, garbage out. BOLERO-2 was expected to be successful because it expanded naturallyfrom one finding to the next.

Adrawback will be the cost. In thisexcellent article by AP’s Marilyn Marchione a one-month supply of Novartis AG’s Afinitor, originallydeveloped as an anti-rejection agent for organ transplants, is listed at$11,000 per month. Another article inthe Boston Globe listed the price as $7,000 per month.

You canlisten to Gabriel Hortobagyi, M.D., director of the Multidiscliplinary BreastCancer Research Program at the University of Texas MD Anderson Cancer Center,and lead investigator, discuss the trial here: http://www.onclive.com/conference-coverage/sabcs-2011/Dr-Hortobagyi-Discusses-the-BOLERO-2-Everolimus-Trial

http://en.wikipedia.org/wiki/Strontium_ranelate

This trial was funded by Novartis.

Genomic testing can now guide DCIS treatment decisions

2011-12-06T17:36:00.001-06:00

The only time I'd really seen my surgeon flummoxed was when I referred a mutual acquaintance who was diagnosed with what's often called 'early breast cancer.' The term means different things to many people. For the woman newly diagnosed the operative word may be cancer; for those who've been successfully treated congratulations may seem in order (YayYouDon'tNeedChemo); for women with aggressive or metastatic cancer it's the disease they wish they had.
"Is she a friend of yours," my surgeon stated, not asking. This was his not-so-subtle way of fishing asking for more information. "No," I told him in all honesty, "she came in under the transom."
This happens in any community once you've had cancer and are here to tell about it. You automatically become an informal source of information on cancer, doctors, treatments, facilities, and how to cope with everything from infection to nausea to dizziness, and whether or not homeopathy, Dr. Mercola or Dr. Oz are good sources of information.
I later found out what stumped my surgeon. The woman's 'early breast cancer' was in fact DCIS - ductal carcinoma in situ or Stage 0 cancer - and she wanted a double mastectomy so she wouldn't ever have to think about breast cancer again. Period. He thought a mastectomy, not to mention a double mastectomy, was like dropping an atomic bomb on an ant. This isn't a story of right or wrong, but an indication of how times have changed in seven years and how, at long last, a technology is now available that can predict when DCIS is more likely to recur.
Results from a clinical validation study released at the San Antonio Breast Cancer Symposium yesterday represent a great step forward in the treatment of ductal carcinoma in situ, which affects up to 45,000 women every year. To date there haven't been any validated molecular markers to select those patients with a high risk of recurrence.
According to a news release issued by the American Association for Cancer Research, this is the first time a multigene test has been used to differentiate the aggressive forms of DCIS that require radiation, from lower risk disease.
The study, conducted by the Eastern Cooperative Oncology Group, validated the use of OncotypeDX in patients previously enrolled in a prior study (E5194) of breast conservation surgery. It clearly identified up to 75% of patients over a ten-year period who were at a low risk for recurrence and could consequently, forgo radiation therapy without any differences in overall survival.
"This is a bigstep forward in terms of treating women with DCIS," said Deanna Attai, MD, director, Center forBreast Care in Burbank, California. "With both invasive andnon-invasive breast cancer, it is clear that some women are over-treated, andunfortunately we are also not always accurate in identifying which women havemore aggressive disease requiring more aggressive treatment. The ability to really identify a cancer's biologicbehavior, "what makes it tick" is going to help us be more selectivein our therapy, sparing many women toxic treatment that will be of little or nobenefit, and identifying women at higher risk of recurrence that should undergomore aggressive, and hopefully more targeted therapy."
Biology, not pathology, is what ultimately determines the kind of treatment required. How a sample of tissue from a tumor looks under a microscope, said the American Cancer Society's Chief Medical Officer Otis Brawley, MD, in a recent NY Times article, "does not always predict."
Bingo. That's the million dollar question. How cancer looks under the microscope may not be the true story of what it does in your body. My cancer may be napping while yours is out to paint the town. Or vice versa.
The test will be available for women diagnosed with DCIS by the end of this year, "If we can spare a woman from having to undergo adjuvant therapies then we can actually reduce overall cost when the test is used correctly. The majority of patients are lower risk," said Lawrence Solin, MD, lead investigator.
At long last, the beginning of technology to help assist women with "weird cells" and how to help them decide other than repeating the oft-told tale of someone's Aunt Minnie. Real data, for women who need it.

# # #

The Measure of My Days

2011-11-30T09:37:00.001-06:00

Psalm 39:4 "LORD, let me know my end, and what is the measure of my days; let me know how fleeting my life is! (RSV)

In a perfect world we live out the "measure of our days" in good health then gently fall asleep, never to wake again.
That's death via Norman Rockwell.
In the Norman Rockwell world 70% of Americans want to die at home. In the real world, only 30% do.
Last year Atul Gawande brilliantly described the emotional and factual cost of end-of-life care in his award-winning article, "Letting Go," published in the August 2, 2010 issue of The New Yorker. He dared to ask at what point medical treatments intended to extend life actually result in more intrusive treatments, more suffering and a greater financial burden on the patient's family.
The story - or what he called the 'dire reality' - was told through the life of a mother who had inoperable non-small cell lung cancer. She was young. She was hopeful. The unraveling tale of chemotherapy followed by increasingly intrusive interventions to counteract the side affects accumulated and spiraled down, one episode after another. How could her story have been changed? Could it have been? Can we direct the trajectory of our final months?
I believe we can.
You may find me off center, talking about death on the heels of a gracious holiday and in the advent of another. I do so because I fear death much less than unnecessary and unwanted care. Intubation. Chest tubes. Forced feeding. IV antibiotics to stave off this infection or that. CPR.
Hang around health care long enough and you'll find it won't take long before you find what you DON'T want. And if you live life on your terms, and pride yourself in doing so, you'll want to die on your own terms as well as much as is humanly possible. To do so you need to write it down.
"You only die once," Gawande wrote.
I also write this today because I've just returned from dealing with an 88-year old man who has not thought through his end-of-life issues. This has to do with how you want to live and be treated, not who will handle the funeral. He has an opposite problem from the young women Gawande wrote about; who so wanted to live she couldn't understand death was near.
My father-in- law still thinks he'll always drive his car and take care of himself. He never considered there might be a point where he couldn't. And the rest of us, his children by biology and marriage, are left deciding the issues for him. Things he used to care about, like filling the bird feeders before the winter winds hit, or making sure the water softener has been cleaned out, are immaterial now. He moves from his bed, to the kitchen table to his lounge chair, where he quickly falls asleep. He doesn't think he's dying either, but his mind diminishes by the day. It's too late for him.
We all need to make our wishes known. Or someone else will. Write your own last chapter. Outline it. Think it through and write it down. It's your life and it will - hopefully much later rather than sooner - be your death. November, if you didn't already know, is National Hospice and Palliative Care Month. In this incredible video, Engage With Grace posted by Renee Berry, speaker Alexandra Drane encourages all of us to answer these five questions:

Five simple questions:
1) Where do you fall on the medical spectrum: from supportive and comfort care only to take all measures possible?
2) If there were a choice, would you prefer to die at home, or in a hospital?
3) Could a loved one correctly describe how you'd want to be treated in the case of a terminal illness?
4) Is there someone you trust whom you've appointed to advocate on your behalf when the time is near?
5) Have you completed any of the following: written a living will, appointed a healthcare power of attorney, or completed an advance directive?

Cancer and its treatment teach you about mortality. It can leave you feeling powerless. Turn the table and empower yourself. By determining what you don't want you very well might define how strongly, how vividly, how incredibly, you are living your life today.

All good things to you,
Jody

Health care: IRL

2011-10-28T13:54:00.001-05:00

There's nothing more energizing than being around creative people. They do what they do because it's part of their DNA. My friend Claire M (her name has been changed) is one of them. Some of her words to live by are on the left.

Right now though, Claire has more on her mind than the next beautiful thing she'll create. Her family health history includes an extensive amount of breast cancer (her mother was diagnosed at 28) and she is a colon cancer survivor. Now, at 37, she's found a palpable breast lump.

There's one more thing: Claire doesn't have any health insurance.

She lives in Harris County, Texas, home of the massive Texas Medical Center, one of the richest, most medically intensive areas in the world. Some 40 institutions make up this city within a city.

Yet according to Shern Min-Chow, co-anchor of CBS-affiliate KHOU-TV in Houston, some 30 percent of Harris County's own residents are uninsured, far from easy access to the Medical Center campuses. That's about 1.2 million people, based on current census data. The national average is 16 percent, Min-Chow told the audience at last week's Seventh Annual Breast Health Summit, presented by the Breast Health Collaborative of Texas.

Women like Claire, with medical issues that are not emergent but ARE pressing, spend days, weeks, even months trying to have one health issue thoroughly addressed. So far it's taken two months to have an appointment at The Rose, Houston's leading facility for breast health services for under-and uninsured women.

First, Claire told me, she needed to have a referral to The Rose from a private physician to have a mammogram. She doesn't have a primary care practitioner, or PCP. So The Rose provided a referral so Claire could be referred back. Then another few weeks elapsed until she could see the doctor for the referral. This physician, in turn, was alarmed to the extent that she recommended and scheduled a stereotactic biopsy for Claire at The Rose. In turn Claire made arrangements to a friend travel to Houston so she could accompany her for the procedure.

That's where our last conversation had ended. Yesterday morning I thought about Claire while I was looking through my notes from the conference, so I dropped her an email. Ironically enough, the panel that Shern Min-Chow moderated was called, "Breast Cancer & Access to Care: The Texas State of Affairs." No one really has a clue. The private insurer pointed to the legislature; the public health official discussed the burgeoning workload; the think tank policy person ...just talked. If you asked anyone in the audience what was said the answer very well might have been, "it's a mess." Access to health care for the uninsured in Texas is a rudderless conversation.

What they needed on the panel was someone like Claire.

She arrived at the The Rose to find the test wasn't free, but cost $65.00. She was told that without the $65.00 she couldn't have the test. And instead of a sterotactic biopsy, where a small bit of tissue could be extracted for pathology analysis, the physician on duty that day said it wasn't on the schedule. After a mammogram, and an ultrasound, he said he couldn't see anything but that her breast were "very dense," a diagnostic problem in many younger women. He did add, as he was walking out the door, that she should probably get some "genetic testing."

And that's where it had all stopped when I talked with her yesterday. Nothing else has happened. She applied for Medicaid to find that she made $100 too much per month to qualify. She followed the instructions to apply for a Harris County "Gold Card," following the procedure online, only to find out half-way through that instructions have to be filled out and mailed in or delivered.

In the meantime, she says, the lump is still there.

And yes, I know it's October. We didn't have time to talk pink. We didn't have time.

###

Upending Pink

2011-09-30T15:06:00.000-05:00

"Having breast cancer is massive amounts of no fun." -- Molly Ivins

Graphic by Kathi Kolb

It's time to upend the ribbon and turn the pink upside down.

October has made me uneasy for a long time.

If you put four women with breast cancer in a circle more likely than not one of them will develop and die of incurable, metastatic disease. Or from the attempt to wrestle devilish cancer cells into a chronic condition, like diabetes or heart disease. But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable.

For the other three of us from the circle, the treatment that brought about remission (does anyone say cure?) can leave side-effects that are physical and psychic, not to mention financial. In the past thirteen years I have learned to deal with all but one. The repeated distress of losing that one woman from our circle, the one whose cancer cells were simply uncontrollable, is like losing a limb. Over and over again.

In the meantime, medical sociologists like Gayle Sulik, PhD, in her book Pink Ribbon Blues and sharply observant bloggers like Rachel of The Cancer Culture Chronicles keep raising the curtain on 'pink profiteers' and the 'pinkification' of a difficult disease into something far from the reality most women experience. Money that could be used to fund meaningful research or even funds to directly help affected women is instead diverted into piles of pink "stuff" with the pennies (if that) from those purchases ending up God knows where.

"Breast cancer has made a lot of people very wealthy," Lea Goldman writes in her excellent article, "The Big Business of Breast Cancer." in Marie Claire. Here's she's not razzing on the health industry but the undersided tactics of several large, national breast cancer charities that employ telemarketing services to solicit your funds. From those funds, these "philanthropists" pay themselves handsomely, and oops, sometimes "forget" to make those donations made to the cause they claim to help.

Read Goldman's article side by side with USA Today writer Liz Szabo's "Pink ribbon marketing brings mixed emotions poll finds.," developed from questions added on to an exclusive USAToday/Gallup Poll about President Obama. What stuck out like a sore thumb: more than 80% of the sample said that they had purchased a pink ribbon product.

So is this what breast cancer - or any kind of cancer - awareness means to the majority of Americans now? Purchasing a product? What happened to modifying risk factors that can be addressed or helping assure that underserved populations have the same care that those with insurance do? Isn't that part of awareness, too? Without additional surveys and questions directed specifically at the link between the two (and other factors) we can't know for sure. But I'm not sure that would be far off the mark.

# # #

Starting Monday "UPENDING PINK" October on #BCSM with Gayle Sulik, PhD, at 9 PM ET. Please join the conversation.

Left Behind

2011-09-26T16:05:00.000-05:00

Many of you know about the recent loss of a lovely friend and family member to metastatic breast cancer. She was 55. Her first grandchild is due this January.
The cruelty of cancer is relentless.
My friend had access to great care and the mind-bogglingly expensive 'designer drugs' that did little to stem the tide of her cancer. They didn't improve her quality of life, either. In fact, treatment further weakened an already impaired immune system and ultimately she died of pneumonia after three weeks in the hospital.
At her memorial service this past Friday the Seattle sky was cloudless. Many of us were too warm in fall clothes but there was a lovely patio adjoining the reception area so we stood out there, remembering, laughing, letting tears flow, talking about our dogs and the weather.
There was a box with programs and next to that, another one with pink ribbons and pins.
I hesitated.
The hesitation, in and of itself, infuriated me. I didn't want the politics of cancer to intrude on this quiet, private evening. But that is what a pink ribbon has become: a mixed signal. Where it may have once stood for hope and advancement, it now also represents commercialization and 'branding' (a term I've come to dislike) that has absolutely nothing to do with or for cancer. That simple ribbon, which I wore proudly when diagnosed in 1998, is now seen to mask the darker realities of cancer: treatments that don't work, the sorrow of lives cut short.
But the people who put the ribbons out had no idea about mixed messages or health culture. So I put one on my collar. And as soon as the service was over I left it behind.

Monday, September 26, 2011

Beyond Our Words

2011-09-11T08:28:00.002-05:00

We remember.

We remember exactly where we were, what we were doing, who we were talking to. It was a beautiful September day. And then it wasn't anymore. And it wasn't for a long time.

Ten years later I simply need to let my thoughts fall. On Friday night I watched a 9-11 anniversary special on television and oddly enough, I wanted more. But more what? More words. More words examining, thinking, looking with fresh perspectives. More words leading us to a path that is different from the one this country has traveled since that fateful day. A path that initially brought people together but sadly, began to diverge into hardened stances where compassion seems to have evaporated.

Because it impossible for anyone to forget. All you need is one image. Just one image, of the north tower moments after it was hit, replays all the 9-11 stories, of both towers falling, of people running for their lives in NY and DC, a crater in a Pennsylvania. And bravery beyond what most of us know - with men who trudged 100 pounds of gear up the down staircases, and men who wouldn't take no for answer and stormed a cockpit. People whose world went dark and reached through their own moment of hellish terror to bring another to safety.

To honor their courage, to truly honor the memory of what happened, we need to do better. Beyond our words. We need to move beyond our words. Before they grow meaningless.

# # #

Samuel Barber, Adagio for Strings http://www.youtube.com/watch?v=BGMwNe9WWmE

One Last Letter

2011-09-06T16:26:00.000-05:00

This has never happened to me before.
I just sat down to write what I know will be the last letter to a fabulous woman who has entered the last few weeks (days?) of her life. Her breast cancer recently returned with a vengenace in her lungs, her liver. In no short order it was apparent that treatment was not helping, and now she sleeps, I'm told, more than 98% of the time. She rests without pain. She is without anxiety. She is my age, 57.
This is not about fight, or attitude, or last chances, or resilience. It is about acceptance.
I stare at the blank sheet of paper. There's the moment of crossing a river, into the unfamiliar before the first words begin.
Start with the obvious.
My dearest friend,

This morning ____ told us the news about your illness and that you made the wise, and merciful, decision to stop treatment. He tells us that you are resting without pain, and without anxiety. This is as it should be, dear lady.

The cursor continues to prompt me, egging me on, and it has no understanding that my mind has come to a complete standstill. Tears have given way to shock. Ink dries on the nib of my fountain pen. I remember reading letters like this that arrived for my father during the short three-weeks he lived after his diagnosis and before his death from lung cancer in l978. Some were typed. Some were scribbled on notebook paper or cards. We loved them. We -- my brothers, sister, mother and I - passed them around and read them; folded them up and read them again. So in remembering, I'm reminded that I'm not just speaking to my friend but to those who are there with her now.

Continue to talk about your day as it happened. Think. Think. Think.

So I took thoughts of you with me while Katie and I went for our morning walk. It's one of those stellar days when a hint of smoke in the air brings in happy memories of fall. The dog sensed it, and ran off like a bat from hell. You would laugh yourself silly -- like we do - just watching her. Her nickname? Hot Rod. She's another chapter in our mutual story of "dogs we've loved."

Just trust and still your mind. Trust that the words will lead the way.

I can't presume to know what you've been through and the byways you've had to navigate these past few months. I am sure you've done this with your usual grace and honesty. What I know with certainty is that the love you've brought to everyone you've touched lasts forever. I know it will for me.

Stay on course. Return everything she so generously gave without thought, as easily as breathing.

It stunned me to realize that we were only together twice, yet, like all who have met you, I can feel the light you radiate to this day. Mutual friends have said the same. I still laugh out loud when I remember walking through an Army Surplus store with you, and the stunned look on your face as you tried to imagine winters where you'd actually need eight layers of long underwear? And hip-length boots? What? Who knew! At the time you didn't - though you'd come to encounter them-- but on that afternoon it was all just another great adventure. Another great adventure. You brought equal amounts of love and adventure to every moment. Later that day you laughed and waved a powder blue bra in the air, amazed that you'd finally become an adult with bras and underpants that MATCHED. It was all WOW for you. That's because you are the wow.

You brought everything into every moment, an abundance of love, of light, of adventure. You showed me that is impossible to live well without all of them.

You need to go, now. And release her.

You are surrounded by love, you are returning to the light. It dawns on me you've known this your entire life. You knew so in a natural way. You showed us by the way you lived. I am forever grateful for all that you are and the love you brought to all of us.

Love never fails.
I Corinthians 13:8

Yours. Always.

* * *

In honor of EM, and the 150,000 plus women with metastatic breast cancer, I will host a blog "rounds" on metastatic breast cancer in October and weekly discussions on "pink" during breast cancer awareness month on #BCSM. More details to come. I thank Katherine O'Brian (@ihatebreastcancer) for suggesting this, and Gayle Sulik (@pinkribbonblues), Rachel Cheetam (@ccchronicles), Dr. Susan Niebur (@whymommy), and Debbie Thomas, (@debmthomas) who are scheduled guests for some of October's chats.

Bridging the Gap

2011-08-29T13:32:00.003-05:00

Last November I was on the planning committee and a speaker for Life Beyond Cancer's annual survivorship retreat at Lakeway Resort on Lake Travis, outside of Austin.

From: The New York Times.

This conference is exemplary for lots of reasons: it's not just for "the breasts," but for women with any kind of cancer, at any stage. Women with metastatic disease initiated some of the best discussions we had: at the end of the day, what really matters? How are you going to spend the time you have on this planet? How will knowing each other empower you in the months to come?
It's ironic to me. Although articles about "fear of recurrence" are ubiquitous, its silent and subsequent corrolary - the avoidance of women whose cancer has recurred - gets short changed.
That's why tonight on #BCSM we're going to talk about that. This is not about symptoms of metastatic disease or its treatment. It's about the experience of some 150,000 women with breast cancer, whose "new normal" can change with every CT scan.
It is my hope that this discussion can help distill fear and deepen your compassion. Women with metastatic disease do not need my fear, or yours. They don't need false hope or half truths. But your friendship and support? There's a world in those two words.
Let's see what we can do.

# # #

Tonight on #BCSM: "Bridging the Gap - Meeting the Needs of Women with Metastatic Disease" at 9 PM ET / 8 CT

Resources: For two exemplary voices in the struggles of women with metastatic disease please follow @ccchronicles and @whymommy. Powerful voices, beautiful women.

From The New York Times: A Pink Ribbon Race, Years Long. ; Metastatic Breast Cancer Network,

Back to Reality

2011-08-15T09:51:00.002-05:00

Back to reality:

HoustonChron Houston Chronicle

Houston weather today: Highs around 101. Mostly sunny, turning partly cloudy. bit.ly/c7r3wv

Travel is absolutely a fabulous gift. The return isn't always, as you can see by our forecast.

The bigger shock, though, has been the relentless march of cancer across the lives of people I care about. In the short time I was gone two women died of cancer way, way before their time; two more were recently diagnosed, and another friend had to have three separate surgeries to obtain clear margins in her early stage breast cancer.

Stranger yet was the juxtaposition of these events to an article about Kris Carr in The New York Times Sunday Magazine, "Kris Carr: Crazy Sexy Entrepreneur." Many of you are fans of hers, and I appreciate that. My concern: the grey line that connects newly emerging cancer celebrities to the Oprah and Dr. Oz powerhouse, and people accepting their utterings as gospel. That's alarms me. But as it's said, sex sells.

She beat cancer not because of who she is but because of the kind of cancer she had. What Kris Carr is famous for is writing about a cancer that -- most fortunately - has not taken root. No treatment. No surgery. No chemo. No radiation. But one woman's green drinks and enemas does not constitute evidence-based medicine. It is about marketing, her shrewd ability to fill a niche for a new cancer vocabulary, and our culture's voracious appetite for a fresh face.

Beyond all though is the nature of post 9/11 empowerment and our cultural need to believe that by golly, we can take control of any and everything with the right amount of vegetables, mantra humming, and "phabulouness."

But it isn't reality. There are many things we can not control. Cancer that is biologically aggressive in nature is one of them. And I find this kind of voodoo tremendously insulting to the millions of people worldwide who are not as fortunate to appear on the other side of the cancer treatment stream with limbs, psyche and mind intact.

Of all the cancer stories available that the Times profiled this is a sad reflection on what is perceived as "fit to print" about cancer. This story doesn't accurately represent people with cancer. It's more like a cartoon, and a bad one at that.

I'll Be Back

2011-08-03T07:02:00.000-05:00

Ah. I'll be on the road less traveled starting today. On retreat, on the lam, off the grid, on vacation. Unplugged and uncharted. But not unhinged or unhappy.
I've already ordered a few books to read and a new pair of walking shoes. The heels have been totally worn down in the pair I'm wearing. I'll also pick up a small notebook for writing. That's it. I even have a new 'vavoom' dress. All I'll need is some red lipstick.
While I'd like to say I'll take a vacation from thinking about cancer I doubt that will happen. As my circles deepen I know more and more women who are newly diagnosed, undergoing treatment, and one has ended treatment. A woman with a daughter and hundreds of students and people who love her. That's the story of cancer.
We need to continue to change the narrative of this disease.
While I'm gone Alicia Staley will moderate the #BCSM tweetchat on Monday, August 8. I know there are tons of topics to cover. Would you do us a favor and jot some of them below?
See you on Monday, August 13. I'll be back.

Our Families, Our Friends, Ourselves

2011-08-01T11:35:00.000-05:00

My sister and co-survivor.

When I was diagnosed with cancer it wasn't just about me. My husband was part of the diagnosis. My sister was.

And so were my friends, an incredible group of women that immediately organized to share helping with rides, food, errands, and "fly-overs" when they'd stop by on their lunch hour with flowers or a bowl of soup during the week following chemo.

I was spoiled rotten, in other words.

But I certainly can't say that was the case for my husband or sister, or my friends, even.

I had glimpses....looks I caught on my husband's face when he didn't think I was watching; or the moment I had to screw up my courage to call my sister and tell her that I had cancer. She was newly separated, and a working mother. Her son was three.

Steve & I at Peyton's Felicity Farm.

The demands of their lives didn't stop because I had cancer. They multiplied.

And treatment can go on for a long time.

The question becomes: how can we truly help the entire family - whatever its make-up happens to be. A brochure on "Caregiver Burnout" doesn't really go the distance for those who are in the trenches with us and are carrying the load while we can't.

Let's talk about this tonight on #BreastCancerSocialMedia tweetchat beginning at 9 p.m. These are tough issues in my book, and I'm looking forward to hearing what helped you and yours, what didn't, and what we can do to change that.

Out of Isolation - #BCSM

2011-07-11T10:56:00.000-05:00

Even if no (wo) man is an island it can certainly feel that way when you have cancer.
I've often wondered if the dislocation I felt during treatment was simply part of being ill in general or a side affect of cancer in particular. Certainly younger cancer survivors often experience an acute sense of isolation and loneliness since few, if any, of their peers are in the same boat. Even at 43 (old by young adult standards), I was the first of my friends to go through cancer treatment and when I was hospitalized at one point with a life-threatening infection, it felt as though I was hovering on the edge of the world.
Then last week I read a post of Beth Gainer's "Heroic Moments" where she talked about the people who helped her though treatment. Her then-husband and parents could not cope with her diagnosis. That would be a kind of lonlieness few of us can imagine.
Her post reminded me that most of us with cancer end up feeling disjointed and jarred emotionally in some way, so for tonight's second #BCSM tweetchat we'll talk about the ways we cut through that isolation. Was it a natural process? Did someone reach out to you and help you through? Did you reach out via social media or some other channel? I think these thoughts and experiences are part of the survivor's journey and as importantly - a point where intervention can help make the process easier for each other.

Someone who showed us how? The beloved Betty Ford, who died this past Friday at age 93. Her down to earth honesty, grace and courage in publicly discussing breast cancer, then substance abuse/addiction resulted in significant, permanent and lasting cultural change. She was a woman of substance. She would probably scoff at that description as well. I'll leave you with this fabulous photo posted by Jamie Inman on her blog yesterday.
So let's help each other out of the trenches, then dance on tables.
Join Alicia Staley and I tonight at 9 pm ET for the weekly #BCSM - breast cancer social media - tweetchat. Look forward to talking with you!

#BCSM Sparklers

2011-07-05T17:03:00.000-05:00

The debut of #BCSM last night had its own share of fireworks, sparklers and verbal pyrotechnics that ranged from the poignant to the hilarious.
What a way to begin.
There were 55 people who joined in, from all across the country and Canada. We had an almost equal blend of survivors, doctors, nurses, and medical professionals.
Three things struck me:

I. The Scope of People Affected. The survivors who signed on last night also included the sisters, husbands, daughters, and friends of women with cancer. Their curiosity, willingness to understand and learn moved me enormously. As a community, we always have to remember that for each of one of us diagnosed there's a circle of loving and caring people.
When asked via @stales T1: What brought all of you here tonight for #BCSM? What do you hope to learn, gain, or share? the tweeting torrent began:
@KathyKastner: I come from a family of bc surviors..myself: health blogger and curator, producer of pt ed tv networks. Likely lurking and learning #bcsm
@NateOsit: Nate here, friendly Health IT geek, poking my head in to see patient activism in action! #bcsm
@MedPedsDoctor: BC does not stop on a holiday. Neither should we. Time to learn from others #bcsm
@NurseFriendly: @PracticalWisdom Breast cancer affects the entire family, not just the woman who has it. Guys can use some pointers on how to help :) #BCSM
@CrGonzalez: Hope to gain BC perspective and insights; also want to learn how to stay cancer-free.
@amyrnbsn: Serendipity as well, but now I'm here to understand how to best support a pal. #bcsm

Within this group of participants, there was sincere desire to understand current thoughts about prevention, as well, which is something for all of us to think about! That's a topic for a chat on its own.

2. Incredible Dynamics and Depth of the Breast Cancer Community Itself.
The reality of breast cancer is how much the disease can vary by individual case, from preinvasive tumors to women who have had multiple surgeries, chemotherapy, radiation and hormone therapy. Some have all or part of those elements. Some are in remission. Some are cured and will only know this with 100% certainty when they die of something else. Some have metastatic disease, which is not curable and involves ongoing treatment that the survivor does not "finish." In other words, all breast cancers are not the same. They are hardly equal. Yet the desire to connect, support each other, share information and yes, laugh, knocks me out time and time again. The survivors on our chat ranged from women who are still in treatment, have recently finished to women who were diagnosed at a young age with metastatic illness.

These women these women wanted to educate others as much or more than they hoped to gain.

@ccchronicles: Repeat after me...I must use the hashtag #BCSM
@adamslisa: @BCSMchat I'm here to answer any questions that newly-diagnosed or in-treatment women might have, esp abt BC diag/treatment as a mom
@bugoliath: @stales My sense is the many people have the wrong idea of breast cancer. I hope we can change that.#bcsm
@bugoliath The belief that it's curable, for one thing and not the nightmare it truly is for most women
@ccchroncicles “@bugoliath: The belief for most womem...Roger that BUG #BCSM
@bcsisterhood There needs to be real honesty between patient/family & doctor. Some families don't want the truth. #bcsm
@drsnit No one teaches people HOW to be patients. Getting a diagnoses is just the first part of the process of illness journey #bcsm

These women wanted to educate as much or more than they hoped to gain.

3. Honest: Poignant, Up Close and Personal.

These women call it as they see it:. On this question: T2: When women finish treatment they hear this term "new normal" and think, WHAT? What is your norm now? we heard the following:

@BethGainer: @BCSisterhood @bugoliath I'm here because breast cancer has forever altered my life. Want to be with like-minded people. #bcsm
@ccchronicles: @jodyms with BC mets I have all but forgotten normal. Sure do seem to spend a lot of time dealing with cancer crap. #BCSM
@RockNRealty: New Normal is kind of ever changing, an evolving process, i don't try to seek it anymore, i explore the journey #bcsm
@adamslisa @jodyms When I was diagnosed I didn't know anyone my age who had had it (age 37). I wanted advice abt chemo while raising young kids. #bcsm
@ccchronicles: With BC mets, treatment is never over.....I'm amazed how many don't know this #BCSM
@BethGainer: The image of a mental toll road came to mind, never ending. #bcsm
@adamslisa: acknowledging that it's a NEW normal and not just "back to normal" is a step. sometimes friends, relatives don't get that part #bcs

And toward the end I was struck by:

@MedPedsDoc No patient goes into office saying "today I will be grumpy/crazy". Docs need to adjust to the patient's POV. It's all about the pt! #bcsm
@adamslisa: patients need to learn how to tune out the noise of fear, keep forging ahead w/ support of others re: fear of recurrence #bcsm
@Rocknrealty: Normal now includes: hugging my kids, not giving a shit about some little stuff, having short hair, crying easier #bcsm

@BethGainer: Normal for me is double edged. On one side, I appreciate life and have zest for it. On the other, I am haunted. #bcsm

This is just a brief sampling and that was just the first talk. Thanks, from Alicia Staley and me, for joining us, for sharing your best thoughts with us, and your time. We'd love to hear from you:)

Resources:
#BCSM Transcript
On Twitter follow @BCSMChat: The intersection of breast cancer and all things social media.
Watch for: http://bcsm.info

Starting #BCSM Tonight! Topic: What's Normal Now?

2011-07-04T16:43:00.000-05:00

Was it coincidence that Alicia Staley (@stales) and I chose the Fourth of July for the inaugural #BreastCancerSocialMedia Tweetchat?
Let me put it this way: we've been talking about this for too long. Just do it, we said.
An online chat usually starts with a short period of introduction then either three questions (sometimes less) in 15-minute segments. Sometimes groups have chatted for an hour on ONE question.
Tonight's questions are:
1) Tell us why you're here for #BCSM tonight. What do you hope to gain/learn/change?
2) Some call life after treatment the new normal. Let's go beyond that. What's normal now?
3) From a question that Lani Horn (@chemo_babe) tweeted today: what do you do to keep your independence* from cancer? And we DO want to hear from women with metastatic disease on this question, too. All of us have to have a "cancer free zone" in our minds. How do you separate cancer treatment from your identity?
And one last thing: please let us know what you think of this day and time. We want to include as many as possible. I look forward to "seeing" all of you tonight!
#BCSM Tweetchat - 9 pm ET.

Let's Talk: #BCSM - Breast Cancer Social Media

2011-07-01T11:34:00.001-05:00

I can honestly say that social media changed my life.
If that seems overarching let me just tell you a quick story.
When the economy tanked in '09, so did my supply of free-lance projects. As I was looking around for additional work, I kept reading about these great unknowns. One was Twitter. The other was something called "social media."
Immediately I felt intimidated, as though it was something for cool people to do with other cool people. I've never been a cool person. And I was already in my 50's (potentially very uncool even though I'm fond of it). I knew that if I didn't go catch the bus and go to school on both I was going to have a long walk home.
Here we are today, Friday, July 1, and the introduction of #BCSM, Breast Cancer Social Media, a Twitter chat starting Monday, July 4 at 9 p.m., eastern/8 p.m., central. Initially Alicia Staley (@stales) and I will moderate, but a conversation doesn't not "belong" to either one of us.
It's ours.
And our example comes from watching and participating in three different Twitter chats, the original #HCSM moderated by the incomparable @danamlewis, #hcsmca moderated by the also incomparable @colleen_young, and #HPM, yet another fantastic discussion on hospice/palliative medicine started by @ctsinclair.
So we'll blend their example with the breast cancer community's needs.

It's our premise that the breast cancer community needs to redefine pink. That's a premise. The purpose of the chat is to find out what YOU think, from prevention, to treatment, and defining what life is for you now, today, as a woman with breast cancer. There's so much to talk about in fact that we'll never be at a loss for things to say. Far from it.

The challenge will be in saying all that's essential in each weekly, 60-minute chat. We hope that by starting up the conversation we can truly change the tide.

So please join us Monday nights, beginning at 9 pm ET/8 pm CT for #BCSM on Twitter. All you have to do is type in #bcsm in your search feature and anything related to this hashtag will appear.
The only "rules" in regard to a tweetchat are to refrain from shameless self promotion and focus, instead on exchanging the best of what we know to help each other. That's what we do every day anyway. Now we'll do so in one place, at one time.
I can't wait!

Poverty As Carcinogen

2011-06-27T13:15:00.002-05:00

Proboscis Monkey. He has enough to eat.
25% of America's children don't.

Last night my sister and I added another narrative layer to our lives -- we started to text each other while watching NATURE on PBS, she from her living room across town, I from mine.
The particular episode that sent us into into peals of laughter was the "World's Ugliest Animals," of which the unusually endowed proboscis monkey (left) was one example. Our goofy texting and commentary was in stark relief to this earlier exchange of messages:

R u watching 60 Minutes?
Yes. Crying
Me too
God.
Feel so selfish.
I know. I felt the same way. And I keep thinking about all those wall st. types with all their billions and I think, really? It wouldn't take so much would it?
No. The change on their bureau would do.

We were talking about a Scott Pelley's story about a country where almost 25% of the children are in poverty. That country is America.
To add to the irony, or more accurately, the heartbreak, Pelley's interviews were conducted in Seminole County, Florida, adjacent to the 25,000 acres Walt Disney World occupies. Even Dickens couldn't have cooked that one up.
The social and ethical ramifications of hungry, homeless children is enough to take in. But there's more. There's always more.
More than twenty years ago, Samuel Broder, MD, one of the physicians who developed some of the first effective AIDS treatements (AZT) and former head of the National Cancer Institute, said, "Poverty is a carcinogen." This was pointed out in a moving and powerful post by J. Leonard Lichtenfeld, MD, deputy chief medical officer for the American Cancer Society and known simply as @DrLen.
Yes, being poor, hungry, un- or undereducated puts one at significant risk for cancer. While the largely well-educated (yes, WASPS like me) professional classes can afford the luxury of debating whether drinking out of a styrofoam cup or using cosmetics will up my risk for cancer - we are simultaneously living in a society where the largest number of children since the Great Depression are growing up hungry; many homeless. There are some things the greatest cancer advances ever imagined can never fix, and this is one of them. Only we can help fix this, by advocating for not just equitable health care, but a more equitable society where children don't have to worry that they are costing their parents too much money, or about not wanting their friends to know that their father stood on the street corner holding a sign.
Cancer is social. Cancer is economic. Cancer is political.
As Dr. Len wrote, "If we are serious about reducing the burden and suffering from cancer, why aren't we paying attention to those most in need?"
Why indeed. Last night these two separate stories -- the 60 Minutes feature and Dr. Len's blog -- ran through my thoughts and eventually had a head-on collision.
And I can't let it go.

My Other Life

2011-06-22T10:00:00.000-05:00

Still Life with a Curtain / Paul Cezanne, 1895

Earlier this month Marie posed an invitation to her readers to discuss their "other" or real lives. At the time I posted something to the effect of "it's all there." I said this totally without irony or sarcasm.

That's how deeply I feel about writing. Every time I put together a post, or an article, I am all there. What I think, what I value, the words I choose, the topics that matter to me. That's truly who I am, before cancer, after cancer, during cancer, without cancer. That's my voice. Cancer's run a parallel path throughout my life, which I wrote about in some detail in other essays and discussed on the SIRIUS XM program, "Dr. Radio" with NY Langonne Medical Center oncologists Abe Chachoua ("Dr. Handsome") and Silvia Fomenti. The fact is I can no longer separate cancer as a distinct entity any more than I could write about life and leave out my husband, my sister, or my friends.

Through Twitter and Facebook -- you all know I cycle, that I adore my dog, that I'm a Stephen Minister and a lot of other things. A good afternoon is one in a museum, or hiking, or cycling in a competent pack on a cool, crisp day. Nothing better. I quilt when I have time, but I haven't had time for awhile now. I'm an occasional cook (and a good one) who lives in Texas and complains relentlessly about the heat. Second to writing is reading, and I love to travel. Both stir the mind and stirring things up is good for the soul. It's how I hang.

A deeper thread to the story is right here, my husband Steve's cancer story. This was written before his most recent recurrence, a process that involved extensive plastic surgery that kept a "flap" of skin in place securing his ear to his neck for some three months. He says my cancer made his seem like the flu and I say his made mine seem like a walk in the park. What I can tell you is this: his stitches were removed early in June and two weeks later he competed in the Senior Olympics here in Houston. That's cool.

So now I see I have started my entry about why I won't write about my other life. When I write you, this IS my life:) All I can say if make sure it's about love. That's why we're here.

Jody

Data Drop

2011-06-16T17:30:00.000-05:00

The 47th annual meeting of the American Society of Clinical Oncology (ASC0) I attended last week in Chicago is bigger than the town in Iowa where I grew up.
Some 32,000 of your nearest and dearest in all things oncology gather in McCormack Place, a sprawling, four-building complex that has a walkway over Lake Shore Drive and boasts its own restaurant directory. McCormack Place makes an airplane hanger seem positively cozy by comparison.
To this add: a data drop the likes of which are impossible to fathom. There's the abstracts alone for starters (some 4,000); a five-day program with sessions running from 7:30 am until around 6 p.m., and an exhibit hall with everything from big pharma's comfy barcelona chairs, to small booths for advocacy groups and miles of poster exhibits for every known cancer and many you've never heard of before.

The "Hangar" - Exhibit Hall "B" 16 total screens

"Melanoma stole the show," ASCO past president George Sledge, MD, wrote in his blog. By now I'm sure you've seen some of the coverage (NY Times write up here by Andrew Pollock) describing the 'notable progress' two new drugs have shown in prolonging disease progression in patients
with metastatic melanoma, a disease
notoriously difficult to treat.
It was a case of metatstatic melanoma and the death of a friend's sister (she was 46) that was the impetus for starting this blog two years ago. These developments may have provided Denell with the commodity in short supply: time. Time simply to be together with her loved ones. Are these perfect treatments? No. Are they curative? No, but none of us can place a value on another year of life, either.
I'll be writing in depth for OncologyTimes next week on notable sessions in survivorship, screening and breast cancer, from prevention to triple-negative bc and a few things in between. It was stunning to sit in on these sessions. All night long I'd think about cells and try to rephrase what I'd learned, the clack of the train across the tracks echoing in my ears.
What did I see at ASCO? We take our cancer seriously; so do the oncologists and professionals I met. You could hear it. You could see it on the faces of one presenter to the next, as each one personally thanked their patients for participating in the clinical trial they were discussing. There were times when the pauses between questions from the audience, or between slides, said much more than the scientific language could convey. Language is sometimes limited, but 32,000 people, from 121 countries, in one place for five days trying to hash out the next best plan for cancer? That's a lot.
It was inspirational. Enough so that when I developed blisters the last day I just kept walking.

A few convention notes:

1) Biggest game in town: the Starbucks line.
2) Second biggest game in town: taxi line.
3) Third biggest game in town: Cell phone charging stations; and not enough of them.
4) If you have to ask: you've waited too long. Map restroom locations in advance.
5) Understand that the things you really, really want to visit are on the opposite side of the center.
6) Smoking. You don't but you'll be shocked to see how many still do. Go figure.
7) High heels. My feet are shaped like feet, not hooves. Many women were stylin' in sky-high heels while I was longing for shoes with the word "Easy" in the name. Repeat slogan from above.
8) Daily Newspaper: that's how much data drops daily. Every morning there was a 12 - 16 page newsletter covering sessions, with links to photos and video.
9) Sleep. Who needs it? The sun rise begins around 5 am. You might as well stay up.
10) Best thing to carry? As little as possible. Hotel key card, a pen & small tablet. You're good to go.

Later,
Jody

Advances in Women's Cancers - Interview with Andrew Seidman, MD, of Memorial Sloan Kettering Cancer Center. Video by American Society of Clinical Oncology, Alexandria, Virginia.
Coverage on Colorrectal Cancer - by Kate Murphy, Fight Colorectal Cancer Coalition

Mets On My Mind

2011-06-01T18:43:00.000-05:00

Photo of Anna Rachnel & me at NBBC by Nancy Uvmer, NH.

This year May started and ended with two entirely different conferences -- the National Breast Cancer Coalition's Annual Training Conference in Washington at the beginning of the month and the annual meeting for the American Society of Clinical Oncologists in Chicago beginning Friday. This is an especially humbling opportunity to listen, learn from and talk to experts from around the world in every conceivable type of cancer, survivorship, palliative care, and clinical practice management.
Pre-conference posts like this one, from Eric Rosenthal writing for OncologyTimes, point out that this won't be a "BIG THREE" conference -- cancers of lung, breast, and colon -- but " 'the year of small tumors' with the Sunday afternoon Plenary Session featuring studies on melanoma, GIST tumors, and childhood cancers." There are also significant developments in ovarian cancer, something that has been a long time in coming, according to Sally Church, a scientist and consultant.
But before you get discouraged -- keep in mind that there are more than 1300 abstracts in breast cancer alone spanning six different categories, from prevention to triple negative cytology. There will be more than enough for me to feed on for the rest of the summer. Key? All the background work I can accomplish while I'm there so when (not if) a breast cancer breakthrough drops I'll be ready to catch it.

While I'm preparing for this conference the blogosphere's been on hyperspeed. Last week my new column "Anchored Activism" was published in OncologyTimes. A number of people weighed in on the topic of NBCC's baseline report Deadline2020. My interest then and now is following research in the understanding and prevention of metastatic disease, the Bermuda triangle of breast cancer.
In the meantime, in cancer culture Komen once again did something none of us could even make up. "Sometimes, I swear," Kathi Kolb said on her blog, "these posts write themselves." She was talking about the unbelievable new product for the cure, "Promise Me" perfume. The line between fundraising, "brandraising" and mass consumer slop have just coagulated into something so divorced from cancer it isn't even funny. The ultimate irony, as Lani Horn pointed out, is that the smell of perfume makes the majority of survivors sick. I'm one of them. After treatment walking into any closed space - an elevator, conference room, even a hotel lobby - where women waft in perfume is enough to kick off a migraine.
If we weren't talking about cancer some of this might be weirdly amusing. But we are. And according according to the Chronicles of Philanthropy, Komen is one of the most highly regarded charities in the United States. Thanks to the voices of Gayle Sulik, Anna Rachnel, and Katie Ford Hall, among others, there's a serious spotlight shining on all Komen activities. In the coming months I'll be adding in my thoughts.
Two more things. Last week Brenda Coffee's post, "Hang On to Your Husbands" spurred a lot of thought about cancer and relationships. Cancer leaves everyone vulnerable and exposed. A plague on anyone who preys on couples - or singles - during a stressful time.
Then today, in her beautiful way, Marie created a forum for women to discuss their lives, before and after in "My Other Life." The threads of my life have remained steady even though many of the details continue to evolve and change. What runs through mine is passion, reading, writing and commentary. I love to laugh but I'm rarely frivolous. I've found, through my friends in the cancer community in general and the breast cancer community in particular, a place where all my interests fuse and I can best make a difference. This has taken the greater part of 50 years. Thank God I've finally landed.

Later, friends. I'll tweet you from Chicago.

Because

2011-05-23T16:55:00.000-05:00

Photos from tornado ravaged Joplin, Missouri posted today by @TheAtlantic via @InFocus. The entire collection can be seen at: http://su.pr/33xlI0

Because you know, as much as anyone, how easily your world can change in a moment's notice please keep the people of Joplin, Missouri in your thoughts and prayers.

Not only has their world changed, their world is gone. Gone.

From USA Today: "How to Help Victims of the Joplin Tornado"

Peace to you and yours.

jms

The Call

2011-05-15T16:26:00.000-05:00

This post was originally posted on "Join OuR Loop," March 10, 2010

Without a doubt a trip to the dentist last week now outranks my first wisdom tooth extraction as my “most incredible appointment ever.”

Not that I’m writing an epistle about incredible dental appointments, but there’s something about surviving cancer that incredible things happen in the places where you’d least expect it.

Serendipity, yes. Uncanny coincidence? Perhaps. The act of a mysterious and often unfathomable God? I leave that for you. I have my own thoughts, my own faith, there.

When I first saw Anita, my dental hygienist, she looked like she was an exceptional mood. Since she’d soon have that handy-dandy scraping tool in the vicinity of my gums I was glad for this. Insanely grateful, in fact. I was also glad because it had been a bad year for her….man trouble, then a divorce, followed by money issues. So we talked for a little bit about that and how she actually and truly WASN’T fat. I get that.

She turned around with her back to me, lifted the bottom hem of her top and pinched a tad of flesh over her hips. “See?” she said, “I’m getting fat.”

She isn’t.

Girlfriends, Anita is drop dead gorgeous. Tall. Long dark hair and eyes, with lovely brows that move up naturally in a question. She’s intense, driven, funny, and the first girl you’d be in a hair-pullin’ mud fight with. She’s an ass kicker and is gifted with horses. If you ever have a “my little pony” moment and end up buying a horse, call HER first. If harnessed (forgive the pun) she would make an extraordinary advocate for any cause. She’s also, not surprisingly, a perfectionist.

I donned the stylin’ paper bib with the clips, and she peered into the computer to pull up my records. She got to work. When she was still working on my lower teeth she mentioned something about expecting a phone call from a doctor. She scraped on. Then she dropped the word biopsy and headed toward a tooth that usually sends me into the stratosphere.

By then I turned into one large nerve.

“Wha eyopsee,” I mumbled.

There was something about a breast lump, then oh, there were actually two breast lumps, and a lymph node that looked funny to the doctor so they did one there, too. The next thing I know she leans in to work on the inside of my front teeth – you know that space in between the upper incisors – and starts talking about how she negotiated the price for all of this with the practice business manager.

“I got all of it for $550,” she said then. She sat up suddenly and the scraper made a gesture through the air, “for pete’s sake my deductible is $10,000 and you know whose fault that is. Did I make a deal about his $6,000 of plastic surgery when we split? Hell no you know I didn’t.”

She zoomed back in to check another troubling space between my bicuspids. A space she tapped the handy-dandy tool against. “What happened there? I don’t like the sound of that,” she said. “Do you suck on hard candy?”

She was maybe an inch from my head, concentrating on my damn, stupid, stupid, tooth. I felt her phone start to vibrate. Then again.

I gently pushed her hand back. “Your phone,” I said.

“Oh forget it,” she said.

“Let’s answer it.”

I already knew.

###

We sat together while the call came in. I held her hand. She squeezed mine back, in fact, so I covered hers with my other hand. She talked for a few moments and I knew what she knew. She was calm, and then moved the phone toward me so I could listen. Our heads were touching. At that moment the strength of every survivor I’ve ever spoken with – and the grace of God – informed me. It has been ten plus years since my diagnosis and anything I suffered, and my family suffered with me, condensed into helping Anita. All that energy collapsed into a 90-second pause. I prayed this strength would help form the foundation for her upcoming battle. I felt the strength of all of us, the strength of my sister and yours. Those I’d met, and those I’ve yet to meet.

Eventually I ended up with the phone and took notes for her. I asked her doctor to fax us her pathology report. I listened to the doctor talk about how hard it was to get into MD Anderson and I said, ‘you can refer yourself now.’ To myself I said, “what kind of BS is that?” Anita is 37. She’ll needs every tool in the cancer arsenal plus some, to do battle with this. I showed her how to refer herself to M.D. Anderson, an NCI designated facility, before I left her office that day.

Because she’s pretty, and she likes her looks (why shouldn’t she?) the strength of this woman is underestimated. But her strength comes through loud and clear. She’ll kick that bastard cancer where it hurts.

That’s one gift of survivorship. I’m here to tell you about Anita and urge you to support her fight, as I support yours.

Love to you. Do what you can, as you can.

Helping Anita © by Jody Schoger

This or That

2011-05-05T07:06:00.001-05:00

That day changed everything.
One started on Palm Sunday
Another in the startling blue October sky
Another a steamy April afternoon
in the Texas Medical Center
and another
and another
another
cancer.
Until even though well
I simply cannot sleep
thinking, praying for all
these precious lives.

This day is ours to own
we can go up the down staircase
through shadows and into light
climbing, walking, arms open
face open
because we can
pause for a long moment
and
watch sunlight dance through motes
wondering if or how
that same energy could stop cancer cells from breathing.
Stop them.

Photo credit: Kathi Kolb

Deadline 2020: Who Knew?

2011-05-04T15:07:00.000-05:00

NBCC Call To Action

There's a challenge on the table for anyone - and everyone - who has ever been affected by breast cancer.
The challenge is to end the disease by the year 2020.
When I first heard of the campaign - launched by National Breast Cancer Coalition this past January - my skepticism did an automatic override. My immediate thought was that it was a bold fund-raising campaign.
Still, I was curious and impressed with their conference program. I applied for, and was granted a scholarship to attend, which covers both the registration fee and three-nights shared lodging in DC.
Understanding the science, and the "who's doing what where" in breast cancer is imperative to 1) prevent and 2) completely stop metastatic activity in its tracks. Metastatic cancer, those cancers that relocate and take up residence in the brain, the lungs, the liver, or the bones is what kills close to 40,000 million women per year.

Patricia Steeg, PhD - NCI

Yet, as Patricia Steeg, PhD, chief, women's cancers section at NCI, pointed out, the drugs used to treat women with metastatic cancer are those developed for primary breast cancer, not specifically for metastatic disease, which by its very nature is different. In another way, do we have chemo, biologic or hormonal therapy specifically developed to fight metastasized cancer cells? Or drugs developed to see how much a drug will slow slow the progression of the disease? That is a huge distinction.
Into this milieu comes the goal of ending breast cancer by 2020. Here comes my skepticism lurking in the corners.
But.
I never thought that Osama bin Laden would ever be found and killed, either. Even the grandest campaign, the best marketing, the combined passion of advocates, planners and researchers could not have spit out this event in the middle of the conference.
While having a long conversation with Gayle Sulik, PhD, author of Pink Ribbon Blues, Sunday evening about "changing the conversation" about breast cancer, the news broke on CNN that after a ten-year hunt, the 9/11 mastermind had finally been hunted down and killed.
In time we'll eventually hear the work that went into this raid. The planning. Rehearsals. The failures. Redirection. Training and work across agencies, specialties, and capabilities. It was a multi-disciplined approach toward a unified cause: to stomp him out.
It took ten years to track down Osama. Ten years to end breast cancer?
As I flew home last night, outlining the work ahead to communicate what I learned and what I think we need to do, what dawned on me finally was this:
I'd grown complacent. Not in believing that breast cancer(s) - there are many - could be cured, but when or how. Within complacency was another unsettling: how could I believe in finding cures for others if I didn't accept that my remission - my thirteen years of healthy survivorship, was real, too?
This conference ferreted out the last of my own lingering fear. I believe in my health and in so doing I've become a better advocate for the incredible women I met at the conference with cancer and all those I don't know for who are in treatment now.
There was a seek and destroy mission out on Osama Bin Laden. Stick around. We're about to do the same for breast cancer. How will you help?

Temporary Solution for a Critical Problem

2011-04-21T15:05:00.000-05:00

"As a doctor I took an oath to do no harm, but I fear there will be more and more occasions when I can do no good." - Hagop M. Kantarjian, M.D. on cytarabine shortage

Imagine hearing on the national news that a drug essential in treating your cancer was in short supply

That impossible scenario has been a reality for patients across the United States with acute myeloid leukemia, a cancer of the blood and bone marrow that destroys the healthy production of white blood cells. The shortage of cytarabine, the medicine critical in AML therapy, has left physicians in major medical centers to small towns faced with impossible problems and unimaginable decisions.

Hagop M. Kantarjian, M.D., chairman of M.D. Anderson Cancer Center's Leukemia Department, who calls the shortage "a national tragedy,"  described the problem in greater detail in The Washington Post.

"A colleague from Wisconsin wrote, 'We have been forced to form a panel of physicians, pharmacises and nurse practitioners to make make difficult decisions regarding ....this drug (i.e.., who can receive it and who can't).' "

Alicia Staley, writing on WEGO Health said Monday, "As a cancer survivor, this is one of the scariest stories I've ever read."

Three things to understand:

1) Cytarabine is GENERIC. It is incomprehensible to imagine, say, a shortage of Viagra (which isn't prescribed for a condition that can physically kill you relatively quickly, as in the case of AML). The FDA has no authority to make any manufacturer produce cytarabine or even inform the public about issues that might cause shortages. This shortage is not a problem in Europe.

2) There are three companies that manufacture cytarabine, described in greater detail in Alicia's post.

3) A compounding pharmaceutical company, Wedgewood Pharmacy, announced today that is compounding cytarabine, a sterile injectible. A company representative confirmed that Wedgewood has cytarabine available NOW.

Unlike the mortar and pestle image of the pharmacist in a white coat that most of us conjure up, Wedgewood is one of the largest compounding pharmacies in the country, with the facilities necessary for the safe production of cytarabine. Generic drugs are comprised of active pharmaceutical ingredients, or API, which compounders use basically as a "recipe" to prepare a medication.

Let's hope that this development with Wedgewood provides oncologists and their patients a workable alternative to an incomprehensible problem. I don't know about you, but I still have more questions than answers. The issue of generic chemotherapy shortages is alive and in an open file.

1/11/2011 NCI Bulletin: Continued Shortage of Chemotherapy Drugs Causing Concern
4/04/2001 Drug Shortage is Costing Lives
4/14/2011 Cytarabine Crisis: Leukemia Drug Shortage Affecting Many Hospitals - Richard Besser, MD, ABC WorldNews
4/18/2011 When the Drug You Need to Cure a Cancer is Nowhere to be Found

Bring It

2011-04-18T11:40:00.000-05:00

One is not born a woman. One becomes one - Simone de Beauvoir

Last week I told my cycling buddy about some problems I've been having with my hip. "Oh," she said, pinching an imagined bit of fat on her own hip, "it's a bitch getting older, isn't it?"
   No. It isn't.
   It isn't a bitch getting older when you surrender cultural stereotypes about aging.
   Some 12 million cancer survivors in the US alone are more likely to say, BRING IT, BABY!
   Yeah, bring it on.

Something else, even more fundamental, had happened as well.
   When the hip pain started the week before in the middle of the night my first thought was that bursitis had kicked up again, not "it's cancer."
   Slowly, over the years the fear that an unidentified ache, pain, or symptom might be a recurrence has eased and dissipated.
   Actually I wish this had happened sooner, but honestly, you can't ever go back. You can only move forward. There's a lovely woman down the street whose breast cancer recurred twelve years after her treatment. That fact stuck irrationally, an annoying bit of gravel in the back of my mind. Mind you her treatment may have been different, the biology of her tumor probably was, a million differences could have separated our respective cases.
   I had no idea how deeply the fear was ingrained until I had my annual check-up at MD Anderson this month. This year I was even "downgraded" to the survivorship clinic and met with a nurse practitioner. I told her about my neighbor and her face softened. "That's just so hard," she said.
   It is. As long as I'm here I'll be working to change the reality of cancer for others.
   BRING IT.

None of us, as the POM ad so ridiculously says, will cheat death. No amount of creams, elixirs or potions will keep us safe from illness, wrinkles, or heartache.

But there's so much we can do -- internally -- to enjoy what we do have. Live life face first. Jump in the fountain. Spend less time looking in the mirror and more time staring at the faces of those you love.
Memorize their features.

Bring everything. Bring it on.

Live large,
jody

Cancer & the Blame Game

2011-03-29T12:24:00.000-05:00

One of the lesser known facts about life in Texas: the yellow haze.
   Every spring, for about a week, the pollen descends. It covers cars like a thick dusting of snow. You track it across the kitchen floor, the cat drags it in, you wash it from the window screens and wash it off those nice new black pants. And if you suffer from allergies? Kiss your usual face farewell. I'd take a photo of what my eyes look like right now but I'd hate to make you spit out your coffee.
   I was ruminating (yes, I've been known to ruminate, fulminate, and ponder about cancer related issues DAILY) about an emerging oddity in cancer culture a friend told me about Sunday. It's a new version of the blame game.
   The blame game -- especially as far as women are concerned - has been with us ever since Eve. Its range stretches from "what did you do to deserve that?" to "what did you do to deserve THAT?"
   Surely, this line of reasoning goes, you did something to get raped, abandoned, fired, or now, diagnosed with cancer.

   Here's how it works.
   Bad character, "You seem sorta down."
   Good character, "I am. The coolest woman I know is dying of esophageal cancer. I'm flying out to see her this weekend - probably for the last time."
   Pause. Bad character (how could I make this up?) "Did she smoke?"
   Good character, looks at the other, runs character analytics, measures the metrics of the friendship. "No, and you can blow it out yours."

   Another version:
   Good character. "But I can't believe it. She's the healthiest person I know, eats organic food, exercises. All that. And this is her third bout with melanoma."
   Bad character. "Does she lay out?"
     Again. Why would I make this up?

   At best these exchanges are the grist for Miss Manners or the king of manners, Christopher Hichens.
   At worst these cases bode poorly on the capacity of one person to have empathy for another, for the capacity to share, to be human.
   When people use prevention messages to distance themselves from experiencing the pain of another's cancer, then we have more work to do than raise awareness. Sometimes too much information is just that: too much. Let's continue to deconstruct the fear so that people aren't so afraid of being diagnosed with cancer that they can't hear what another person is saying.
   After my friend told me about this I took the dog for a long walk then sat down on the deck. I put my hands down on the armchair without thinking. They were covered with pollen. It's like these inhuman reactions to real human suffering. I so wanted to wash it all off.

Stay real,
Jody

Disaster Drill

2011-03-23T17:15:00.000-05:00

Two words: flash drive.
   Two more thoughts. Buy one. Then compile your medical history, current medications and other pertinent medical information into a document and transfer it to the drive. Zip that puppy into your wallet and leave it there. You can also store the document in Dropbox or another web-based program like Backupify just in case (in emergencies, sometimes we lose our wallets).
   Better yet: Park all of your medical information on a mobile app (more below) so your phone becomes your personal medical library.
   You've just taken a big step forward in disaster preparedness.
   None of us can “prepare” ourselves for a disaster on the scale of the Japanese earthquake and tsunami of March 11 and the subsequent nuclear reactor failure. This would equate to imagining your current life – the streets where you walk the dog, all the neighborhoods, the closest grocery and dry cleaners, the closest hospital and shopping center – obliterated and splintered into pieces for miles. All of it washed away and covered in mud. Even journalists, those soldiers of information gathering in dire circumstances, have been shaken while covering this disaster.
   Some of my first thoughts following news of the earthquake, before I'd even seen images or understood its magnitude, concerned cancer patients. What would you do, I thought, if you were in the middle of chemotherapy? Or recovering from a bone marrow transplant BMT? The week the earthquake hit I'd been visiting with Ann Gregory and her husband, Chris. They are BMT veterans. As she was about to undergo her second bone marrow transplant, Hurricane IKE hit the gulf coast. Her hospitalization at MD Anderson went on without a hitch. But the apartment where Chris was staying had a sewage backup as well as power failure. For a week he lived in their car in the MD Anderson parking garage.

Lovell A. Jones, Ph.D.

   Following Hurricane IKE, when thousands of Houston area residents were without power for close to a month, MD Anderson operated successfully for significant time on generators before full power was restored. Lovell A. Jones, Ph.D., MDA's director of the Center for Research on Minority Health, also serves as Principal Investigator of the Secure Gulf Coast Consortium, seven academic and health institutions that are working together to improve disaster readiness in vulnerable populations from Texas to Florida.
   He says the best thing any of us can do is to have all of our medical information on a flash drive. "Until the electronic medical record becomes a reality, the best thing any cancer patient can do to guarantee continuity of care is have all their information on a flash drive. We've also found that we need to tell people to dedicate that drive to strictly to health info. Nothing else."
   The SECURE project will be working with elementary school children on disaster preparedness in order to increase everyone's knowledge of preparedness, especially their parents. What consortium investigators at Meharry Medical College have found already is that stress during events such as Hurricanes Karina, Rita and Ike seem to increase infant mortality following such storms.
   There are steps all of us can take to keep us from becoming a statistic before our time. I've compiled some info below. I hope you find it helpful. For those in states bordering the gulf coast, I've also included the RED CROSS link on evacuation routes.
   And by all means, if you have helpful links or mobile apps to share please let me know and I'll add them to the list.

Stay well,
Jody

*Mobile Apps:
   1) SOS4Life  Cool app (IPhone & coming to Blackberry) that holds your medical history AND translates it into seven different languages.
   2) IChemo Diary Merck. (Free download from Apple) Program to monitor your chemotherapy treatment and side affects.
   3) In Case of Emergency: (Free Blackberry download): to store emergency contact info.

*Ways to Prepare for a Natural Disaster -- Helpful, consise info./ http://www.breastcancer.org/tips/emergencies.jsp

* "Coping with Cancer After a Natural Disaster" -- Excellent summary from American Cancer Society

* "Emergency Preparedness & Response" Center for Disease Control

*Red Cross Shelters

On Twitter #FF @CDCEmergency @CrisisSocialMedia (#smem)

Oasis

2011-03-14T11:25:00.000-05:00

Happy camper Tracy Lukk taking a hiking break 3/10/11.
Photos by Mike Lukk, The Woodlands, TX.

"If you wish to experience peace, provide peace for another." ~Dalai Lama

For the past ten days I've been off the grid, cycling and hiking through the high desert country of southwest Texas with DH and four "ultra-milers' from The Woodlands.

While I was gone, nothing changed...but everything did. Life changed irrevocably for the country of Japan and the millions worldwide who life in earthquake zones. None of us can read about an event of that magnitude without stopping in our tracks, taking stock and taking some action, from saying a prayer to making a donation (sources below).

At the moment the aftershocks were still resounding and the tsunami was yet to come I had found an oasis, mentally, physically and spiritually. We'd been hiking in the Chisos Mountains that day- just one section of Big Bend National Park - and had already climbed 2,000 feet to the plateau you see here where we stopped for lunch.

The vista was breathtaking.

The climb had been rugged, the path rocky. Mid-way, after hitting another section of switchbacks, my left hip started arguing loudly with me. Go back! Then my feet added in their two cents' worth. Girl, this is your vacation! Go back to bed! But like the people of Japan, I had no idea what would come in the next moment.

And there she was right around the corner, without fear and largely disinterested in my aching feet and hips. Completely disinterested, in fact.

She stared. We stared back. In those warmed shared seconds I felt the extraordinary miracle of passing time.

Without moments of serenity -- the blessing of an unexpected oasis -- it's far too easy to lose your bearings. Part of living with cancer or any chronic illness is training your mind to "replay" the unexpected oasis so it can feed you through the inevitable difficult days. I'll now remember the quality of the air that morning, its clarity, and how the sun felt, almost directly overhead, as we stood motionless.

Because the true oasis, as this was, is a rare event, like catching the eye of a hummingbird or being there, at the second the meteor makes it brilliant path in the night sky.

I hope you have an oasis, too, that feeds your soul.

Hugs,

Jody

Social Media: Bedside Perspective

2011-02-22T15:08:00.000-06:00

Three weeks ago today Steve underwent surgery at MD Anderson for a wide excision and immediate construction of a recurrent melanoma on his lower left ear. After the cancer was removed by Dr. Ross, Dr. Kronowitz cut and secured a skin flap that in essence connects the ear to his neck. Now we’re waiting for two things 1) assuring that the flap remains healthy and 2) for a secure blood supply to establish from the ear to the flap, and not the other way around. Dr. Kronowitz then removed cartilage from his good ear so it won’t look like (in our terms) a “skin blob.” When I was able to join Steve in the recovery his entire head was bandaged but he was sitting up, blinking ointment from his eyes and eating a graham cracker. He was calm, alert (sorta) completely without pain or nausea. Beautifully done, I thought.

Ear Reconstruct w/flap secured.

Every hospital experience is different.

For Steve’s recent surgery it seemed as though we'd scored a home-run. Everything went better than expected, from the moment we hit the out-patient surgical department at MD Anderson’s Mays Clinic at 6:30 am on January 31 to the moment we left some 24 hours later. After a boatload of collective cancers I felt like the sun landed on us.

The morning we went in was humid and warm; the day we returned home a winter storm had muscled its way throught the warm Gulf air and dropped the temperature thirty degrees. What a difference a day makes.

What you quickly recognize as a survivor is how much surgery and hospital care spins on attentiveness and intricate detail – someone’s deft skill in starting an IV, a surgeon’s on-the-spot innovation, the tech who follows each aspect of his or her protocol right down to dotting every “I” and “t” that assures that needed medicine, supplies, or test results are in place when needed. Many of the factors contributing to a “good outcome” aren’t immediately apparent to us as survivors or co-survivors. We know if we have to wait, if the receptionist is polite, if the physician’s nurse is someone we enjoy talking with, or if the PA cops an attitude. Experience and knowledge fill in the blanks.

It had been eight years since either one of us has had major surgery. Here’s what was different and how the advent of social media platforms changed my perspective.

1) Innovation of the Obvious: Tag Team Pre-Op

Never have I seen so many people checking, double-checking and tag-teaming each other to facilitate the pre-op process, from fellows and PA’s for both surgeons, people from anesthesiology, a tech whose sole purpose seemed to be monitoring his awesome blood pressure, to the others who poked their heads around the curtain and smiled hello. It was such a revolving door there was no time to be nervous. This was also the first time I could clearly see how the system worked. Each player was there to confirm the obvious: Steve’s procedure and his or her role in it, period.

Two things really struck me. The first was the anesthetist who came to start the IV. First she warmed his arm with a blanket, chatting and rat-a-tat tapping his veins. What she learned in a short time is Steve’s own tale of “IV’s that failed.” There isn’t a survivor on the planet without a collection of these little gems. It even took me a moment to realize how much she listened, because she stepped out quickly and returned with the anesthesiologist. He, in turn, talked with Steve while she had the IV in on the next heartbeat. Later, she tells me that after she'd heard what had happened before she'd already decided to only stick him once. She'd asked the anesthesiologist to step in, just in case. How is that for patient-centered care? Gold star.

The other revelation was the beauty of the obvious. When a wonderful nurse with a commanding presence, stepped in and said gently, in a matter-of fact way, "there are going to be a lot of people coming in here and asking you the same question, so bear with us” it was an Einstein moment. Healthcare professionals should never forget how beautiful simple statements can be. Of course. A lot of people are asking me the obvious to make sure I get the best possible care. A team that's all on the same page is the team I want working on my family.

2) Out-Patient/23-Hour Admission: Room Without a View

My 23-hour vantage point.

      Our experience as 23-hour admissions in l998 and then in 2003 were abysmal. I prepared for this one. I packed a change of clothes to keep me comfortable and enough reading material to last me through the end of the year. I stuffed in my pillow, slippers and reading light.
   I geared up mentally. Fortunately, I need not have worried. Unlike the last time, all 23-hour admissions are now located in the same area where out patients recover from their surgery. This means the nurse to patient ratio (there were only six rooms) was absolutely stellar. Had anything been wrong -- and there wasn't - the nurses were twenty feet away, working at their computers.

   3) EMR: Don't Abandon Hope, Hit Enter

From our perspective there were glimmers of the EMR, or electronic medical record. Most of these were apparent when something didn't work, for example, when a nurse in one department didn't record (hit enter?) the very same data the nurse in the next department wanted to know. Information like prior surgical history -- especially at the same facility - should be duck soup, wouldn't you think?

What I noticed: all data from the recovery room and pre-op area went directly into the computer, even tho staff in pre-op had print-outs for their own notes. This makes sense. In surgery, where the consequences of mistakes can be dire, everything has to be documented to protect the hospital. And the patient. In this arena: attorneys rule, and will continue to rule, maybe even facilitating greater and more wide-spread EMR adoption? Who knows.

Simple things, that make the patient's life easier but have no impact on bottom line or direct quality control? Not the same attentiveness. Different departments within the same same facility schedule and post follow-up appointments (to the patient portal) at really different rates; from the day the order is given by the physician to up to four days later. You can call all you want to. It still takes a person to pick up messages and respond.

4) How did social media impact this experience?
In an immediate way, it didn't at all, even though it was everywhere.

Nothing regarding the surgery, physicians or facility were influenced by social media but how I handled it certainly was, from sending messages via DM on Twitter to posting a photo of Steve's nurses on Facebook (they loved being asked for a photo, BTW). Support for both of us rolled in
from both platforms. Priceless.

Steve's still prefers his own social media platform: the hospital message board. Literally. He filled in his own within a few hours of being transferred to his room.

Thanks for your continued support,
Jody

Today as I was writing this the dialog on #hcsm, #EMR and health apps continued at a non-stop rate on Twitter from the irrepresible @HealthIsSocial "The Killer Healthcare App" to today's post from @KevinMD "How EMRs are failing nurses"

When Friends Get Bad News

2011-02-09T11:00:00.002-06:00

You can't be a fully vested member in the survivor community and not run into bad news. Bad news that rocks everything you believe about e-patients, empowered patients, medical progress, the miracles of successful interventions and also, treatments that fail.
   This morning I heard about one of those failures, from a woman who is just 40, and dealing with metastatic breast cancer. She has spit, and fire, and humor, and enough intellectual energy to power rockets. Her cancer sneaks past all that.
   I write this because it is essential that we understand what cancer is in some cases. Not to raise the climate of fear, but in an effort to make damn sure that women with metastatic illness are part every conversation about survivorship. Casting a wider net and building a more inclusive community helps us face and move past our own fear so we can help someone else.
   When friends get bad news there are no answers.
   None are expected.
   But your supportive, caring presence speaks volumes.
   Don't retreat or find excuses not to call or write.
   Stay present.
   Listen.
   Make pie or ring a bell. She has not forgotten how to laugh nor is she contagious.
   And by all means, keep talking.
   Move the conversation forward.

Jody

Cancer Garden

2011-01-28T11:23:00.001-06:00

Update: So many of you have kindly asked about Steve's biopsy. Unfortunately those cells were consistent with malignant melanoma. We were disappointed and shocked, but in a strange way, as each life experience evolves from past -- we're more familiar now with helpful ways to handle this. We truly are survivors, in every sense of the word. That doesn't mean it's easy. Cancer is never easy.

We spent yesterday at MD Anderson meeting with surgical oncologist Merrick Ross, MD and plastic surgeon Steven Kronowitz, MD. The lower portion of his ear will be removed, then reconstructed. As soon as the Dr. Kronowitz said "flap" and "stages," then used the word "patience" at least ten times I knew we were in for more than I'd expected. Since Steve had received prior radiation -- which damages the elasticity of the skin -- reconstruction will have more than the usual risks. After the Dr. Ross makes the wide excision and obtains clear margins, Dr. Kronowitz will follow and secure a flap with skin from behind his ear. This skin is sewed on to what remains of his lower ear. In essence the flap will pin his ear to his neck. This will remain in place until a new blood supply is established. Then the flap will be separated, some cartilage may be taken from his other ear, and he'll be good to go.

For a man who cycles six days out of seven the period of infusing the flap -- which could take up to three months -- might be a kind of purgatory. We didn't even ask about a planned trip to west Texas for cycling in March. He'll ask when he's ready for the answer. Yesterday wasn't that day.

We're grateful that -- as before - this cancer is localized. We're grateful we're within an hour's drive of the country's number one cancer facility. We're grateful for an hour spent in the sunshine in between appointments, sharing a cup of coffee and passing the time of day.

*****

Thomas Avena

Cancer Garden

*****

for the inauguration of the Mt. Zion Cancer Center Garden, 1995

The cancer garden, protected by buildings, one unfinished. Still

the wind will continue through the garden when these walls

are sewn in. Everything known in the cancer garden devolves

to breath. If we can, we open gray chambers and fingers

of the lung. Such breath can sting. Here are vermilion

snapdragons, mild blue agapanthus, poppy. Here in our

veins is the blood of the Madagascar periwinkle; its sulfates --

vincristine, vinblastine, effective against neoplasm.

In the garden we find the man whose veins collapsed nine

times, and each time the neon-colored serum stopped.

The technicians tried their tricks to open a vein, a

and the strange, ambivalent poison stained (oh

how to make these poisons more selective - more

devious and therefore purposeful). In the cancer

garden we are grateful for the slenderness of needles,

the wisdom of the phlebotomist's hand. For the plain

explanation of a doctor -- what is known, and what is

unknown. In the garden there is breath, ambivalence

(in the sense of unknowing - you can live with the fall

of water on your brow, drop by drop). Can you live

with the chill, with bright daubs of petal-bruised flesh,

catheter under the skin. You can look at your body

naked in a mirror, with your hands you can defend

its territories. Is the cancer sinister or blameless? Or

just cells, like all life, with a blind and blinding purpose.

An instinct to survive. In the garden, imagine cancer

as weak and depressed. If the cancer is acid, then the soil

of your body is alkaline; if alkaline, then acid. Let us

pray your body inhospitable to it. Your assertion greater

than that of the cancer -- your desire to live so much the

greater. A riot of marigolds shooting up the spine - a firework

of neutrophil. In the cancer garden all the creatures are active.

Every day, a thousand kindnesses, or a thousand suspicions,

hyper-real, like the furniture of the infusion clinic. In

the cancer garden all of nature is laughing.

from The Occident

Reprinted from:

The Best American Poetry, 1996. Series Editor: David Lehman.

Note about the poet:

Thomas Avena, born in Chicago in l959, wrote this poem at the invitation of Ann Chamberlain, artist-in-residence at the UCSF Mt. Zion Cancer Center. "I wrote about the garden as a physical space, but also as a projection of the body and of the internal war -- and the extreme and bewildering (emphasis mine) processes -- that the cancer patient is forced to undergo. I wanted these lines to flush and fill like the movement of blood within the body. Ann has said that "Cancer Garden" distills the experience of people who pass through the garden. I don't know if this is true, but it contains part of my experience, of Ann's experience, and that of my life's partner..." Avena, his partner and Ann Chamberlain are all cancer survivors.

Dearest Thyroid: I Was Wrong

2011-01-21T09:31:00.001-06:00

My Dearest Thyroid,

I was really, really wrong about you. I'm sorry.

http://iamthefaceofthyroiddisease.org/

Since I first wrote about you last fall, "The fastest growing cancer? Not what you think" my awareness about thyroid cancer and its associated disorders has been flipped sideways. Right off the top, I didn't realize that thyroid cancer is one of the fastest growing cancers in women and that women are three times more likely than men to be diagnosed. You snagged my attention, right there.

Before writing that post I was one of "those" people. I thought thyroid cancer was (she confesses, running for cover) easy. I came to this ridiculous conclusion when I was going through chemo. I'd checked into MD Anderson's GreenPark outpatient facility to have my 5FU "boost' following three days of adriamycin and cytoxin. While I waited to be called, oozing nausea from every pore, the woman across from me struck up a conversation.

As it turned out, she was there to help a friend. She also was happy to tell me that she was a thyroid cancer survivor. She was awesome. "Look, " she said, with a big smile and pointed to the scar on her neck, "it's been ten years."

Gentle reader, that's when I decided thyroid cancer was easy. Just like that. I was already admiring how beautifully her scar had healed, comparing cancers, stacking up odds, minimizing hers to make myself feel better. At that moment I wanted the easy cancer, the one-day surgery-go-home-and-be-finished-with-all-of-it cancer. I'd even jotted DONE on my calendar for the month of December, unaware that it would take much longer than another year to finish. That's probably the only place where ignorance has ever served me well.

As it turns our dear thyroid, I realize now that no cancers are good. Period. Anyone who receives a diagnosis is changed. There's a reordering in perception, of risk, of vulnerability, and a new acquaintance with fear. There are practical consequences, and many of them are financial. Until health care reform was enacted, cancer could follow you everywhere, like a bad boyfriend.

We know that thyroid cancer (like any) in younger adults is especially hard. If it's bad enough in your 40's, imagine being 25, or 35 and staring down a potentially frightening illness. The reality of taking replacement hormone therapy, when the thyroid has been removed, probably sounds a lot easier than it is in real life.

When it gets right down to the truth dear thyroid, you're amazing. Here are a few things I found today:

1) Unusual shape: the butterfly-shaped gland is located below the Adam's apple at the base of your neck.
2) The thyroid packs a punch: Hormones produced by the thryoid influence metabolism (i.e, read weight), temperature, and growth and development, including brain development in infancy and childhood. No one can live without thyroid hormones.
3) Unique qualities: thyroid cells are the only ones in the body that have the ability to absorb iodine, which is required to manufacture T4, the thyroid hormone. The ability of thyroid cells, and most cancer cells, to absorb iodine creates a 'chemotherapy' strategy unlike other cancers. After the thyroid has been removed and the survivor has recovered from the surgery, a dose of radioactive iodine is given. Any remaining cancer cells then absorb the "poisonous" iodine and are destroyed.
4) Best prevention: routine check-ups. Some thyroid cancer survivors had no symptoms. By and large the majority have painless nodules. It's estimated that 75% of the population will have nodules at some point and -- according to Endocrine Web - one in 12 - 15 young women have nodules. The majority are benign.

Since January is dedicated to promoting thyroid cancer awareness and getting one's house in order, I realized my letter was long overdue. I'm so glad to set this record straight. To read more letters written to "dear thyroid" please visit Dear Thyroid at http://dearthyroid.org.

With all good wishes,
Jody

Additional sources:
1) For a podcast that addresses the concerns of young women, iodine treatment and fertility: go to Patient Power, with Andrew Schorr.
2) *James Norman, MD, FACS, FACE, 'Thyroid Cancer' at ENDOCRINE WEB
3) About.com:: excellent information
4) The University of Texas MD Anderson Cancer Center
5) On Twitter: follow @thyroidmary and @dearthyroid

What Not to Tweet

2011-01-11T17:18:00.000-06:00

Every once in awhile even our favorite cancer institutions fail us.
   Most of the time those failures don't endanger us physically, but emotionally? What's a bit more anxiety for women with cancer?
   Today my frustration deals with the Call Back.
   Not the polite "please have the doctor call me when he/she can" but the "we'll call you when we have the biopsy results" kind of call. Those calls. The kind of call you don't want to receive yet race to answer as soon as the phone rings. Right now, maybe even yesterday, when we were still naive, would be good.
   Immediately following my diagnosis I experienced a nightmarish before and after onslaught of thinking. Images of what I was doing exactly the week prior, before cancer, danced unrestrained through my thoughts and filtered up from my dreams. Relentless unease, in other words.
   Right now I'm hoping our lives aren't bordering on another 'before and after' episode.
   Last week Steve had a core biopsy on his ear, in the area of his original melanoma. Consider this. The original melanoma was removed and the margins were clear. Then it recurred. The recurrence was removed, and the margins were clear. He then had radiation. Following that he enrolled in an 18-month clinical trial testing a melanoma vaccine. He is now five years away from the recurrence. As of this moment he's still five years away from that recurrence.
   But somewhere, someone had MD Anderson hasn't checked their voice mail with Steve's request for his test results. There are no snow days here. Failing to return patient calls can not be explained by the weather. If there's one thing health care marketers could really do to improve patient satisfaction (which they ask you all the time) it would be to set up reliable patient notification systems for biopsy results. That such a simple procedure -- making a phone call to relieve someone's mind -- goes astray in larger cancer treatment centers is not just unacceptable, it's absolutely embarrassing.
   Two other points.
   From my experience I know that bad news will find you. Bad news hums through hospital systems, energizing the next days' surgical, diagnostic and treatment schedules. That's how healthcare works. Appointment books clear for bad news. The unavailable opens. Positive -- malignant -- biopsy results end up on the top of the pile. The phone rings. Negative, or the good, reports land God know's where. While I suspect that Steve's report is benign I don't know this for a fact. And yes, if it were my test result, I probably would have started calling sooner, having surrendered anxiety for my better health some time ago.
   So right now I'm holding a tweet directed at MD Anderson, with copies to some of the key faculty leaders and public affairs managers. I understand social media, and how it can work from both a positive and negative sense. Outrage is always popular. It wouldn't take long before the message to return Steve's call would fall in the right hands. Squeaky wheels get attention, it's true, but why let them wear down in the first place?

Thanks for listening,
Jody

To 2011: More Cowbell

2011-01-03T11:24:00.000-06:00

It's a new year, a new week, a new day.
   Yesterday Marie Ennis O'Connor asked her readers what three words they'd choose for 2011. I was on my way to a meeting and couldn't stop to write, but I hastily tweeted one word: distill. Less is more in life and work.
   Let me explain. Public enemy number one for most of us in our work lives is distraction. Hit one too many Twitter links and suddenly your most productive work hours have passed you by. So to get my work accomplished staying focused is essential. That way I can move forward with my work and stay connected with my Twitter and Survivor communities.
   And something else. This past year I realized that more than half of my life is over. t's a compelling recognition, a sobering one, and ultimately liberating. I know what I'm about. Being engaged in meaningful work in the cancer and advocacy arena is my biggest priority. Yes, there are literally mountains I want to physically climb and places I'd love to visit, but at the end of the day helping to serve women with cancer is my greatest joy.
   You're familiar with the great phrase "more cowbell?" Well, here's to more joy. I can tell you that you'll find more when you pare you life down to what matters most. Romp in the snow play, skip through streams laugh until you cry. By giving up the fluff you get to go for the gusto. Trust me.

I think the world of all of you. Your loyalty, your continued awesome comments and insights, are the best Christmas gift I could have ever imagined. Here's to you,

Jody

2010's Top Ten Cancer Stories

2010-12-30T22:49:00.002-06:00

Question from Susannah Fox to the President’s Cancer Panel after presenting results from the Report Cancer 2.0: “Given the evidence that people are ready, willing, and able to engage in online discussions about cancer prevention and treatment, what steps are being taken to ensure that the U.S. (and the world) does not miss this latest opportunity for education and discovery?”

This year in America approximately 83% of Americans searched online for health information.

_ _ _

There's something about lists. We love them. We make them, scratch items off and then start another. We use lists for groceries, to compile all our things to do, priorities, projects, books to read and trips to take.

I was thinking about the top ten cancer stories of the year and looked through the NIH Comprehensive Cancer Center network -- some 40 of the country’s top cancer institutions. I couldn’t find what I was searching for, so I combined some of my picks with various newsletters. There are many stories I know are overlooked. Please add in those I've missed. For now, here are my ten top cancer stories for 2010.

1) Health Care Reform

For the first time—beginning in 2014 -- no one can be denied coverage due to a preexisting condition. For those of us who have to insure ourselves, for thousands of young adults and women who are unemployed, underemployed or in-between jobs, this is huge.

While surveys indicate that the majority of Americans don’t think much of the legislation, it’s essential we consider a wider and long-range view. An unhealthy nation can't compete. An unhealthy nation can't prosper, regardless of your politics. This is a very small step on a long road.

2) Sick of Pink: Komen Can't Cure

The slow burn on “pink madness” turned into a bonfire this year. Kentucky Fried Chicken’s “Bucket for the Cure” was a promotion even Saturday Night Live might find hard to top.

The sick of pink mood prevailed throughout social media, from the incredibly funny @ccchronicles and her pink awards roster (your handgun for the cure was my personal favorite) to an in-depth analysis by Alicia Staley on WEGOHEALTH about Komen’s clutch on their “for the cure” slogan. She asked the tough questions. The usually reticent Komen even replied. If you haven’t done so yet, take the time and look at "Lawsuits for the Cure." Many now wonder about if we’ve reached the end of awareness-building effectiveness. Getting a mammogram isn't necessarily a preventative measure but a diagnostic one. A vaccine is a preventative measure. Let's find one.

3) Breast Cancer Advances

This year we saw some turn-rounds in breast cancer treatment:

* Doctors now say that slowly progressive weight lifting like the program developed by the Pink Ribbon Project, does not increase a woman’s risk for lymphadema and in fact, may lower it.

* ZOMETA. Reports from the San Antonio Breast Cancer Symposium (SABCS) about using the bone-building drug Zometa as part of adjunct therapy for Stage II and Stage III breast cancers literally contradicted themselves. The problem evolved from comparing two entirely different trials. One sub-result showeda 29% survival benefit in women who were five years post-menopause, yet this received scant play. What? A thirty percent benefit doesn't sound like mincemeat to me. The best articles were from Sally Church "Some Additional Thoughts on Zometa in Early Breast Cancer", following a long conversation we had one night on Twitter, and another from CURE Magazine’s Melissa Weber in the Winter 2011 issue available here: http://bit.ly/gyZrkb.

*Mammography. Can you tell me why mammography is still paired with the word “controversy?” Are you confused about screening guidelines? I’ve yet to see any definitive cancer risk for ten mammograms – the number of tests you’d have from ages 40 – 49 by keeping the base age at 40 instead of raising it to 50. Finding the cancer isn’t the problem (when women get mammograms,that is – see #9) keeping the cancer from recurring IS. Of all the tests that are abused in medicine, I hardly think it's the mammogram. Somewhere we’ve missed the mark. A long-term study of head CT’s – especially in practices where physicians OWN machines -- would yield far greater radiation risks than a few extra mammograms. More on mammography if you are interested: http://www.medscape.com/viewarticle/732735

4) Lung Cancer Hits the Radar as Women’s Health Issue

The death of Dana Reeves, a non-smoker, from lung cancer in 2006 put a new face on a horrible and stigma-laden disease. Now we know that the incidence of lung cancer in women has increased six-fold over the last 30 years. Adenocarcinoma, once rare, is now the most common type of lung cancer in women of all ages, particularly in young people who haven't smoked.

This year, simultaneous advances in medicine and the persistence of patient advocates helped move lung cancer, the most underfunded yet largest cancer killer in the US, into the public eye.

A study published in the journal Lung Cancer showed that CT scans reduced the death rate among 53,000 current and former heavy smokers by 20 percent compared with regular X-Ray screening. The study looked at death rates in a different, smaller population of heavy smokers, and estimated that those who received up to two CT scans would have between a 36 and 64 percent lower risk of dying, compared to those who went unscreened.

New clinical trials and advances in personalized treatment have provided some boosts and tools for oncologists to use in treating women with lung cancer.

From Edward Winstead, NIH: For Lung Cancer, A New Drug and a Way Forward and this from Reuters: More Signs Lung Cancer Screening Could Save Lives

5) Patient -Centric Care

I had “patient centered” care at MD Anderson back in the dark ages of the late 90’s – beginning in l998 to be exact. That’s what I chose after consulting with a number of oncologists and surgeons in the greater Houston area.

“Patient-centric” seems obvious – who else should the care be about – the doctor? A new era is evolving. We've all seen a few “surgeon kings” change the air in the hallway as they pass by. I applaud those hospitals and physicians who have been patient-centered for years and have no need to revise their terminology. Patient-centric care, where your participation, your input, your questions and clear communication are not just encouraged but expected – helps professionals tailor a treatment plan that best suits YOUR cancer. Please don’t “settle” for anything else.

Here are two great examples. One is on “Shared Decision Making,” by Dr. Victor Montori at the Mayo Clinic. The interview captures the essence of clear communication, from both the patient’s and the physician’s perspective.

The second is a terrific application of theory in practice. I applaud @emacartney and the Palo Alto Medical Foundation for the 2006 creation of PAMF’s Cancer Patient Advisory Council. The council does more than committee speak or fill blank pages with names on a roster, but have affected change in both survivor care and wellness programs.

6) Lifting a Veil: Palliative & Hospice Care

When you are newly diagnosed or in treatment palliative care and hospice services are the very last subjects you want to think about. It’s much more than the financial necessity or making a will. As you heal from treatment and begin to value your life more and more, the task of addressing how you want it to end becomes – if not easier to do – more understandable from many angles. To me it is a loving thing to do for yourself and your family. Just lifting the blinders and acknowledging the topic is a start.

This year a study showed that palliative care (which actually means supportive) actually extended the lives of people with advanced lung cancer. What HPM (hospice and palliative care) professionals recommend, in fact, is being part of the patient’s team at the point advanced disease is diagnosed. In this way, difficult end-of-life decisions can be grappled with before the later effects of illness cause both patient and family even more stress.

My attitude changed over the years, following the death of my mother and subsequent death of friends to cancer. We can’t control when we’re born, but to some degree we can let others know how we'd like it to end. There’s even a study underway – Communication in Oncologist-Patient Encounters or C.O.P.E. – that will help train professionals to help initiate end-of-life conversations with their patients.

7) The Power of ONE

Never discount the power of one. Here's what just a few women I’ve met this year have done to turn the tide.

*Suzanne Lindley, founder of Beat Liver Tumors. If you don’t know the story of the Texas housewife who took on Congress, please read: http://bit.ly/ihGsZq

*Tami Boehmer, author of Incredible Survivors, intimate portraits of people who are thriving despite a grim prognosis.

*Jennifer Windrum, a one woman tornado of lung cancer building awareness with WTFLungCancer.

*Britta Aragon, founder of Cinco Vadas, for her work building awareness about toxins in make-up and skin care products.

8) The fastest growing cancer?

No, it isn't breast cancer. The fastest growing cancer is thyroid cancer, which I wrote about earlier this year. The disease has a large presence on social media thanks to advocates and writers Kairol Rosenthal and Katie Schwartz. These are intelligent, passionate (and funny) women who reach thousands. If you know of any women with thyroid cancer send them to @dearthyroid, for information, support, and community.

9) Adherence

Adherence is the ugly step-child of cancer care. This year we found out that almost half of the women who were prescribed hormonal therapies for breast failed to complete their course of therapy. Then a study released at SABCS in December revealed that only half of the 1.56 million women (in study group) age 40 and over received a mammogram in any given year. Further, only 60 percent received more during a four-year period - http://bit.ly/17fPC5.

The potential for future health woes inherent in these two findings gives me the chills. As women with cancer it’s essential we move out of ourselves, out of our own cancer cluster and start talking with every woman we know. Be bold. Ask. Did you get your mammogram this year? Your colonoscopy? When was the last time you had a physical? Or a pap smear?

Women CAN get basic screening at little or no cost. The CDC's National Breast and Cervical Cancer Early Detection Program has provided free-or lost cost screening for more than twenty years. Here’s where to start: http://apps.nccd.cdc.gov/cancercontacts/nbccedp/contactlist.asp

Adherence is essential in all proactive health measures – from a healthy diet, to exercise and stress reduction. It’s not enough to take a pill or take a walk every once in a while. Our ancestors didn’t need a mobile ap to tell them to get up and feed the pigs or milk the cows. The sheer fact that they had animals to tend to made the aspect of choice irrelevant.

Maybe we need to reclaim some of that spirit and stop thinking of exercise, for example, as something we may or may not do. Maybe the choice will be which one, or, what’s the most efficient exercise I can do today with limited time. Maybe our choice isn’t what silly diet to try next but what foods will I pick to nourish my body today? Maybe the choice isn’t whether or not to take tamoxifen or my aromatase inhibitor (did any of you skip a chemo treatment? Or a radiation treamtment? Me neither) but what coping mechanism can help me overcome these hot flashes? We need to help each other do better in every regard. Let’s find ways to help each other succeed.

10) You are unique. So was your cancer. Personalized treatment will come.

As each child has her own unique genetic footprint, so does cancer. Our cancers are not alike. No one size fits all protocol cures breast cancer, or lung cancer, or colon cancer, or leukemia. No one even agrees on what constitutes a “cure.” I’m perfectly content with the term “in remission.”

As researchers reach more deeply into cancer cells, following the wandering paths of enzymes and proteins, the whys of recurrence and metastatic activity will begin to fall in place. Perhaps one study result will become the stone that finally creates the avalanche needed to demolish cancer. Its my hope to watch this avalanche pass by and around me in my lifetime.

All good things to you and yours,

Jody

Holiday Care

2010-12-21T12:12:00.000-06:00

Christmas 2009/Iowa

There's something about the winter landscape that turns my heart upside down -- the amplified light in falling snow, trees outlined in stark contrast against the sky, sunlight sparkling through icicles.

Christmas is a time of mystery and joy, happiness and loss. I've come to realize that if you live long enough the season of joy will have its edge of sorrow. There's the cold in the sharp winter wind and darkness falling in late afternoon. People we love fiercely are no longer here. Those we thought would always be with us simply aren't. People don't 'lose' a cancer battle. Let's get the emphasis right. Cancer steals too many.

And in the ebb and flow, the Christmas carols, wonderful food and festivities it's easy to forget one of the best things we can give ourselves is stillness. It's essential.

Here's what I've found that helps capture the beauty of Christmas.

1) Make a joyful noise. I started my preparations last Saturday, slowly unwrapping the Christmas boxes and ornaments. Every ornament in my collection has a story. The decorated tree, once finished, becomes an album. No decorator tree here, with everything matchy-matchy.

Some of the ornaments date back to -- hang on -- the 50's so in today's vernacular these would be considered "vintage." The ornament here is from a gifted couple who turned the unspeakable loss of their infant son into a celebration of each and every day they had him in their lives. It's so rare to read about people like Bill and Sharon - they don't have 150,000 twitter followers, or a foundation, or a big this or that. They have hearts so large mine swells writing about them.

A priceless gift.

We all know someone like them, people whose grace and beauty are like manna from heaven. I'll be calling them these week. reconnecting with friends is such "joyful noise!"

2) Create a new tradition. Scaling back the Christmas cooking is an act FOR both mental and physical health. Do we really need a tray with ten different cookies? Nice to see in a magazine but in real life: my sister and I divided the food prep in half and with a twist: I'm trading all the cookies for one incredible recipe for caramels from my friend Laura T at The Spiced Life,

3) Celebrate the good in the world. If you haven't seen what the awesome Bloggess has been up to, please read this write-up in the Washington Post. about her and find your way to pay it forward.

4) Resolve -- Make a firm decision about your health and keep it alive! If you need an exercise buddy leave me a comment and we'll work something out! Last week I recounted my path toward fitness in a guest post -- 'The Accidental Athlete' -- I wrote for journalist Mary Knudson's blog, Heartsense. Hope you can check that out!

5) Let loose with the four-letter words: Love. Hope. Care. Cure. You have all enriched my life this year beyond measure. Be good to yourselves, be good to each other and remember this incredible message posted by The Bloggess in her Christmas Miracle Post:

From @TheBloggess in true Christmas spirit.

Thanks for being part of my life. Livestrong,
Jody

The $15,000 Faint

2010-12-17T11:26:00.000-06:00

A good ride spoiled -- November 25, 2010

Some of you already know that I spent Thanksgiving in the hospital.

It was a fluke, a frightening moment that turned into a 24-hour - oops - make that a 23-hour stay. It was the first (and last) time I've ever been wheeled into an emergency room feet up, head down.

This was also the first time I've been an empowered patient in the age of social media.

What a difference technology makes. Instant access to my Twitter feed, #HCSM and #Livestrong friends added an entirely new spin to the displacement of being well one minute and riding in an ambulance in the next. Within moments of tweeting that "something weird happened," my inbox filled with virtual hugs and messages of concern from. People truly do care.

Here's what happened.

As it was getting light that morning I cycled to town for the annual "Run Through the Woods" event. For years we've volunteered with the Woodlands Cycling Club to escort the runners, from pro-ams to families out on a healthy-holiday jog. We have a great time supporting them, then cycle another 20 - 30 miles so we can enjoy our Thanksgiving with (some) caloric impunity. On our way over to the starting point my tire slipped into an expansion joint and I toppled straight over and landed right on my knee cap.

In typical fashion I hopped back on my bike and started pedaling. This is what you do when you fall down in front of a crowd of people who are now staring at you as though you've sprouted another arm. You pop up like a jack-in the-box. And smile. Your biggest, most charming, No, I’m not really the idiot I appear to be smile.

But by the time I reached our group and stopped I went from feeling stupid, to feeling unwell, to feeling lousy, to losing it, all in less than five seconds. It was like an underground sprinkler system broke. Water started dripping from me. Nausea came on like a freight train. The next thing I knew I was sitting on the curb near the stoplight, a medic on each side. They seem to have beamed down for the occasion. One was taking my blood pressure and watching me with the intense, odd concentration of someone who can’t hear anything going on in your veins.

What trilled across my mind was an appointment two days earlier with my internist. Right before I was left she came back with my EKG reading. She said something about a "poor r-wave progression" and ordered a nuclear stress test. That was a “what?” moment. While I know now this phrase doesn't mean much if you're heart is healthy, I did not know this Thanksgiving day. So when the medics were adamant about doing an EKG I agreed. It wasn't long before I was on my way to the hospital. Until the ambulance left I didn’t even know that the competitive run had been delayed until we cleared the intersection.

You see how all the pieces came together now, don't you? What an awful day.

Having my Blackberry was almost as good as having my own pillow. I became my own paparazzi. Taking horrible photos from my phone somehow helped the worry. Click. Look, there’s a photo of my helmet! Wow! Click. Look, there’s a great picture of Steve’s bike! Click. Click. Click. My Blackberry became another way of telling the story. Still, as cool as smart phones, social media and online communites are there are some things about being in a hospital that haven’t changed:

1) Any pain you're experiencing will inevitably be worse lying in a hospital bed;

2) Not knowing a test result or the cause of symptoms you’re experiencing will bring into play up all the bad things that COULD be wrong despite the fact you were healthy until this happened;

3) Social media and chatting with Twitter pals does not change the fact that the longer you stare at the IV needle in the crook of your arm the more that sucker is bound to hurt;

4) Experienced nurses are much more forthcoming and fun to be around than a freshly minted one who may view you as a potential rehabilitation project. The older nurse brought in a portable computer, had a super laugh, and read all the test results to us as they arrived. We talked about her ex-husband (who we agreed, did not deserve this awesome woman), cancer, stress, sudden death and holidays. The new graduate, on the other hand, started citing studies on red yeast rice instead of telling me my cholesterol readings. Party pooper.

5) Survivors missing lymph nodes are given bright pink bracelets lovingly titled "AFFECTED LIMB. NO PUNCTURES." You can still expect at least one tech to start to take blood pressure from the arm regardless. Slap them. They won’t know the difference.

6) Meals will still provide you and your loving family member (LFM) with a five-minute laugh break. Start a 'name the entree'' contest. The one who dares to take the first bite gets dibs on #7.

Fried foot? Oh, it's fish. Who knew?

7) As a seasoned survivor you already know how to take care of yourself. The good food is always in a small room off the nurses’ station. That’s where they hide the Diet Dr. Pepper and Blue Bell ice cream. Send your LFM on a raid.

8) If you are admitted through the emergency room for 23-hour observation, an on-site physician called a "hospitalist" will be your new best friend. This is probably outstanding if you can understand them. Two different physicians visited. I tried dear readers, yes I did. Go back to awesome #4 nurse. She will explain what’s going on, and why. Besides, you already know what’s going on, don’t you? I did.

9) There’s still no easy way to manage IV’s, wounds and a bath from the sink. Still, after all these years.

10) Something surprising will happen. After talking through everything with me the next morning the consulting cardiologist says suddenly, “oh, you had a vasovagal response to falling.”

“A what?”

“You fainted.”

Cool. Leave it to me.

Even though I scrubbed our Thanksgiving this year, the next time I fall? I’m grabbing the smelling salts on the way down.

Happy holidays!

Note: I actually did learn a lot from this experience. Surviving cancer doesn’t leave us immune to other problems associated with the A-word (aging). Heart disease is still the number one killer of women in the United States. My thanks to journalist Mary Knudson, author of Living Well with Heart Failure, for her friendship, input, and advocacy on behalf of women with coronary illnesses. Mary blogs at http://heartsenseblog.com/

San Antonio Breast Cancer Symposium #SABCS

2010-12-08T15:34:00.001-06:00

More than 9,000 people from over 90 countries are in San Antonio this week to discuss the latest breast cancer research.

Since I'm not able to attend as I had planned, I am providing the NEXT best thing -- aggregated tweets from #SABCS -- thanks to a tip from Sally Church (@maverickNY).

<p>&amp;lt;a href="http://www.coveritlive.com/mobile.php/option=com_mobile/task=viewaltcast/altcast_code=dd33035811" &amp;gt;San Antonio Breast Cancer Symposium&amp;lt;/a&amp;gt;</p>

Never Say Never

2010-12-07T12:44:00.001-06:00

Elizabeth Edwards*Getty Images
July 3, 1949 - December 7, 2010

Never say never.

I thought I'd said all that was possible about Elizabeth Edwards. Since the announcement last night about her worsening condition, lovely attributes of good will (from Doug Ulman on Twitter "@livestrong is thinking about our dear friend Elizabeth Edwards. Living with such grace.") have continued nonstop. In the process, the accolades continue to grow. It almost feels as if her obituary is being written in the here and now. It has been some time since a female public figure, one who had never sought public office on her own, has so captivated our attention.

There are many qualities about her we love: her intelligence and the kind of strength that attracts us like moths about warm light. She is a grounding force, not just in the slippery world of politics, but for life in general. Those who have met her and wrote to me invariably mentioned her kindness, a beauty that flows beyond the photos. Her ability to move forward following the unimaginable death of one of her own children draws us to her. Add in her extraordinary way of communicating ANYTHING, then her cancer. By her own description she is resilient. Plus, in many ways she was a far better politician than her cartoonish husband could ever aspire to be. He slipped and fell headfirst into the beauty of his own shadow and she kept on going.

For the better part of this morning, and some of last night as well, I've reread news articles and am about to search for others that profiled Mrs. Edwards from the early days of the campaign. But when her cancer recurred, and she opted to continue on the campaign trail, I remember angrily writing my sister, "how could she DO that?" Step aside, I remember thinking. Go take care of yourself. But I also know how easy it can be to get caught up in something that feeds you. It is often much harder to step aside than it is to keep on going.

What came clear to me about Elizabeth Edwards is that in addition to her many incredible qualities she also became a canvas on which we might paint life's very best qualities. As anyone we admire starts to slip away the feelings of grief, of anger, of sadness, for our combined cancers begins to multiply. Public figures like Elizabeth and Lance Armstrong serve us so incredibly by gently and generously extending the best of themselves. It it's as they offer their best qualities, and in the beauty of our shared humanity - we take what they gently extend and in any way we can, play it forward. No one can accurately describe the dance we have with those we don't' know but love and admire none-the less, and no one can tell me it isn't real, either. Somehow in her life, many of us found more of our own.

Elizabeth, thank you. Bask in the love of your family and friends. Surprise us, yet again. Let all these prayers take you far past your expiration date. It will be a long time, before we'll let you go.

I am thankful

2010-11-23T10:26:00.002-06:00

Note: Yesterday Brooke McMillan at Livestrong put up a simple, but powerful entry on Posterous about gratitude. After the wonderful Life Beyond Cancer Retreat this past weekend and with Thanksgiving in mind I wanted to share a few thoughts of my own. Blessings to you and yours.

Photo: Debbie M. Thomas

I am thankful for health, for the alignment of cells that brings remission.
I am thankful for the love that surpasses all understanding.
I am thankful to taste mystery, each and every day.

I am thankful to have touched my nephew's head when he was just moments old,
and to access that moment of benediction and grace,
by simply remembering it
and there, to this day
is the touch of hair like silk.

I am thankful for my family, the funny, offbeat, whipsmart, messy, really messy and deeply charged lot of us.

I am thankful that I no longer stress that the other shoe will drop.
They have dropped and will again
but when engaged in now shoes recede,
the love that surpasses all understanding
brings us through somehow.

For too many years I thought I was lucky,
now I am thankful.

*******

Interesting article from today's Wall Street Journal: "Grateful people are healthier, happier, long after the leftovers are gobbled up: http://online.wsj.com/article/SB10001424052748704243904575630541486290052.html

Happiness in a Storm

2010-11-19T09:05:00.001-06:00

Wendy Harpham, MD

Wendy Harpham never wanted to be known for her significant contributions to cancer survirvorship.

Given her dreams, she wouldn’t have coined the phrase “healthy survivorship” either, or been the author of several best -selling books on the topic. And the appearances on Oprah or the Today Show? Those weren’t on the agenda in l983 when she obtained her life’s dream and opened a solo practise in internal medicine.

Like the survivors gathered this weekend for Life Beyond Cancer’s 10^th Annual Survivorship Retreat in Austin, Wendy Harpham didn’t have cancer on the agenda. But this is how it happens to thousands of people diagnosed with cancer every day. Like that, your life changes.

Just seven years after opening her practice, and by then the mother of three young children, Wendy was diagnosed with a Stage III non-Hodgkins lymphoma. She was 36. Disease at this stage is not curable.

As a physician she understood the odds and the challenges.

As a woman, as a wife and mother, she faced them. Seven different recurrences. From the repeated courses of chemotherapy and resulting illnesses came the heart-breaking, but necessary, decision to close her practise. Cancer made managing a busy office impossible. Careful management of her energy was essential. This is how her talk this morning “happiness in a storm” holds such depth.

“It’s important to separate expectations and hope," she said. "Hopefully accepting the likely outcome while hoping for the best possible outcome. While I could expect that my cancer might recur, I could still hope to live as fully as possible.”

When I spoke with Wendy by phone about a month ago one of the first things that I noticed about her is the strength – not just the sound –of her voice. In her photos, she is petite, with a beautiful ivory complexion and deep blue eyes. But make no mistake, her strength, calm confidence and intelligence come through loud and clear, especially when I asked her what she tells newly diagnosed women with cancer.

“Cancer is not a death sentence, “ she said. “Cancer is an illness that is treatable. Obtain sound knowledge, nourish your hope, and act effectively.”

The physician speaks. And the survivor knows. “You have to use all your strengths as a woman to become a healthy survivor."

More about Wendy and the gifts she brings to the survivorship community will come.

All of us here at the Life Beyond Cancer Retreat have affirmed: she's our new best friend.

###

Hope Always: Dr. LaSalle Leffall

2010-11-08T21:31:00.002-06:00

The older I get the more reserve I lose. That's how I ended up in the second row tonight as Dr. LaSalle Leffall, Jr., physician, educator, writer and an inspiration to thousands, took to the podium at the Life Beyond Cancer Foundation's Distinguished Medical Speaker Series at US Oncology headquarters in The Woodlands.
   To say I was fortunate to attend is an understatement. Rare are the opportunities we have to listen and watch as someone who has helped shaped and advance cancer prevention, treatment and care stands less then ten feet away. To unabashedly say I'm a fan? Yes, that is true.
   Dr. Lefall talked about one advance after another in cancer treatment, from surgical advances (smaller amounts of tissue removed with greater precision) to progress in targeted chemotherapy, and the incredible promise yet to be realized in immunotherapy and nanotechnology, where less will indeed be more.
   The full measure of Dr. Lefall's gift wasn't fully grasped until he recited these lines from Emily Dickenson:

Tell all the Truth but tell it slant-
Success in Circuit lies
Too bright for our infirm Delight...
The Truth must dazzle gradually
Or every man be blind-

     As De. Lefall deconstructed the lines as an oncologist, he reveals how talking to us -- as women experiencing cancer -- is indeed an art. As a patient I watched the wheels turning when my oncologist at MD Anderson weighed science and treatment options with his understanding of me as a person to gift me with his best possible advice. These were sacred moments. In these moments I understood why someone would aspire against all possible odds to become a doctor. I heard this again tonight from Dr. Lefall.
   How does an oncologist think about and acknowledge YOUR prognosis in a way that is true to medical practice yet takes into account your history, your experience, and your capacity and willingness to go the distance? In reciting this passage from Emily Dickenson, Dr. Lefall spoke volumes about the marriage of science, his experience with people with cancer, and the knowledge that experience inspires to ascertain the difference. All of these factors operate in the small exam rooms where we talk to oncologists about treatment.
   And what did Dr. Lefall emphasize to us as he spoke so eloquently?
   There is always hope. There is always a Lance Armstrong story, the incredible story about a young man with a testicular cancer that had metastasized to his brain and his lungs, yet who is here today as testimony to never, ever, say never.
   There is always hope, hope for the best possible outcome, hope that your medical professionals (of which Dr. Lefall would humbly profess to represent) will do their best on your behalf each and every day.
   Because as a patient of Dr. Lefall's you would know this: he would give you the truth, with wisdom, and experience and yes -- the grace -- to lead you to where your hope might be.

Thank you and good night,
Jody

More information about Dr. Lefall:
Washington Post Feature: De. Leffall, Jr., Surgical Pioneer
The History Makers
No Boundaries: A Cancer Surgeon's Odyssey (NCBI)
No Boundaries: A Cancer Surgeon's Odyssey (Amazon)
And:
Life Beyond Cancer Foundation

Notes on November

2010-11-02T15:59:00.001-05:00

Hello sweet November!

Our eight-week dry spell finally ended with a fantastic thunderstorm last night, I took a trip to the voting booth this morning with (yes, still) hope in my heart, and the pink cloud from breast cancer awareness has dissapated and given way to new causes and campaigns.
Since cancer is rarely fun let's start off with a few things that are. Movember (or the month formerly known as November), is an outstanding international effort to promote men's health awareness. Women are excellent about sharing health information with each other. Men? Not so much. Movember helps to change the face of men's health -- literally. The main challenge is to grow the "mo" to see who can get the best moustache by the end of the month (hello Tom Sellick?) It's a lighthearted take on a serious topic -- prostate cancer, among others. An excellent summary for the man or men in your life: http://us.movemberfoundation.com/mens-health/

The other big awareness effort underway this month is lung cancer, which kills more Americans than any other cancer. If you think about the obvious - how deeply buried within our bodies our lungs are - you have one reason why most lung cancers aren't detected until they've reached a later stage. While we all know that smoking is a path to lung cancer (and every one and their dog will try to help you quit if you do smoke) an alarming fact is that 60% of all new cases are people who have not (or used to) smoke. Some 20% of those are women.

A few tweets, links and articles I've found on lung cancer and a hodgepodge of other interesting topics that caught my eye are listed below. Later this week I'll start blogging about the LBC Foundation retreat coming up soon.

From: @BrownBeanSprout

How She Became An Advocate for Lung Cancer. http://blog.lungevity.org/2010/10/12/the-compassionate-cycle/

From: LungCancer.Org

The MAGRIT study is a Phase III study involving more than 400 medical centers in 33 studies. This is the kind of study anyone recently diagnosed w/lung cancer needs to know more about. Go to: http://www.ascitrials.com/lung-cancer

From @EmpowerHer

November is National #Alzheimer's Awareness month, do you know the symptoms to look out for in yourself or your loved ones? http://t.co/xnb2eJV

From@LibbysHope
Best acronym ever: U-B-E-A-T ovarian cancer: U=urinary symptoms; B=bloating; E=eating, feeling full quickly; A=abdominal pain; T=Talk 2 doc if persistent.

From @Cure_Magazine
When every moment counts. The always wonderful Suzanne Lindley (@rslindley) lives w/Stage IV cancer. She guest blogs for Cure: Three Months of Time: it it worth it? http://bit.ly/cSqGIb

From @NYTimes
Funniest opening paragraph ever:"A month ago I went on a juice cleanse. You know what it cleans out of you best? The will to live." The rest of the article The Juice Cleanse: A Strange and Green Journey is funny and informative about a practise that makes sense to Demi & Gwennyth -- but not this camper.

From @BreakCancer

Brought you to by the LIVESTRONG Young Adult Alliance, with the quick take younger adults bring. And it is FUNNY. Follow them on Twitter @BreakCancer, take a look at their website and enjoy.

My last two cents: Soy. Oy.
Too many articles I've seen do not distinguish between pre- and post-menopausal breast cancer in relationship to soy consumption. It matters. A hospital based nutritionist told me that the same soy that may help prevent breast cancer in premenopausal women might yet actually fuel tumor growth in postmenopausal women. As a result -- right or wrong -- I keep many soy products on the same shelf as red meat More food for thought? http://healthland.time.com/2010/10/20/tofu-to-fight-tumors/ No pun intended.

From @WegoHealth.
This is diabetes awareness month and another condition you can do much to avoid. Your best bet? For starters toss the remaining Halloween cancer and stick with foods that are low on the glycemic index. It's an easy and healthy way to eat.

From: @CDC_Health
Cancer, the flu & you. Scheduling my flu shot now. The scoop from the CDC: http://www.cdc.gov/cancer/flu/

From: @DebMThomas
Another round on the #gratitudealphabet. Big hint: tomorrow's letter is "c." I've been mediatating all day on the beatitudes. They keep me centered and our shared purpose right in front of my face.

Cheers!

Women Helping Women: Breast Health Collaborative of Texas

2010-10-30T16:31:00.001-05:00

Take a handful of determined Texas women who refused to accept the terms "no access" and "uninsured," give them a little more than five years and you have the Breast Health Collaborative of Texas, a public-private partnership that works to assure that any woman with breast cancer in Texas has access to both detection and, when necessary, treatment.

Frances Arzu, founder of Pink Phuree BCS
Dragon Boat Team and "Harvey," a fund-raising
ribbon & brainchild of Susan Rathke.

That the group has been recognized both nationally and internationally comes as no surprise to me, especially after attending the organization's sixth (my second) Breast Health Summit this past week in Houston.

All the big players from the Houston Medical Center are members but a key factor of the Collaborative's effectiveness is that it may be the only place where various advocacy groups -- the people actually on the front lines with the underserved -- are members as well, from grass roots advocates for boat people, Asian, Afro-American and Latina women to the Young Survival Coalition, M.D. Anderson, Memorial Herman, Komen-Houston as well as well as professors from the University of Texas Health Science Center and School of Public Health. All good.

Content? The program included a number of animated and powerful panels and talks on survivorship as well as decoding health care reform and the role patient navigators will play. During a break-out session Venus Gines (who could ever forget her name?) explained some of the Latina woman's barriers to screening and how Dia De La Mujer Latina works not against -- but through-- those fears with community-based promatoras and "health fiestas." These programs give me hope and enthusiasm for extending access one step further: from the fiestas to phone applications from web-based programs.

This is point where we as "epatients" and digital health advocates have work to do. Understanding of social media and its potential in addressing health care was fairly low in this group. More than one speaker placed blogs (like this one or Brenda Coffee's) on the same playing field as Farmville, not as another avenue for improving access or literacy. There's much education to do on all fronts to keep the playing fields equal. If groups advocating for the underserved are missing connections via social media then we haven't yet fully completed the circle.

But thanks to the Breast Health Collaborative of Texas, we can at least contemplate what going full circle might truly mean for underserved women and their families.

Consider this example: A working mother of three gets a call one morning from her sister, who's standing in a line for a mammogram at a health fiesta in Corpus Christi. She picks up her mother, brother and sister-in-law and off they go. There's music, food, and a place for the children to play. All four women -- who have never been screened -- now have baseline mammograms. But the other brother-in-law, the one she brought back later in the afternoon? He was diagnosed, and successfully treated, for an early stage breast cancer.

If we add a social media component to this model an app is in place as a reminder with the location and date of next year's fair. This data, along with any test results, are stored as EMR in a secure portal that the patient can access. If she wants, she can upload additional information from the breast health portal to her phone.*** All the information is one place for any further referral if necessary, and an entire network of people now have an entry point to the health care system.

That works for me. Question: do you know where to refer a friend without insurance for breast and cervical cancer screening? This is what the Breast Health Collaborative does for women in Texas.

# # #

**These examples are modified from actual cases presented during a break-out session. One of the women who attended a fiesta screening program returned with her husband, who'd been too embarrassed to have a lump he'd found in his own breast examined. In the Latina community, involving the entire family is critical.

***HIPPA compliant. Today @chiah posted an important discussion on privacy and electronic health records http://bit.ly/b2YvbB.

Additional Information:
Breast Cancer Info: Medline
The Rose : Breast health services -- Harris County, Texas
Lone Star Clinic: Breast health services -- Montgomery County, Texas
St. Lukes Episcopal Health Charities Breast Cancer Portal (info on breast health services across Texas)
Breast Cancer Trials

Awareness, art or exploitation? The Scar Project

2010-10-14T08:37:00.000-05:00

The Scar Project: David Jay

It's easier for those of us who are fortunate enough to have the early days of breast cancer behind us to "stink on pink" or "unravel the ribbon" on the commercialization of breast cancer.
   But it may be something else entirely when your scars are still new. I nearly added and when you're "young" (under 30? 35? 40? 45?). Is there any woman who didn't feel "too young for this" when receiving a BC cancer diagnosis? Or for that matter: any kind of cancer?
   The vulnerability that cancer reveals is unnerving and the core of what photographer David Jay captures so hauntingly in The Scar Project, an exhibit of full-scale portraits of young women with breast cancer. He started this awareness-building effort when a friend of his was diagnosed at 32. She is one of approximately 10,000 women under 40 diagnosed with breast cancer every year.
   To hear of a 25 year-old woman with breast cancer was completely out of the ballpark years ago. It isn't now. The youngest woman diagnosed in 2009 at The Rose, Houston's well-known breast cancer detection and navigation organization, was 19. Of the more than 27,000 women served by The Rose, there were 37 women under 40 diagnosed with breast cancer. Of those, 34 did not have insurance.
   When I first learned about The Scar Project a year ago I saw the image you see above. It stayed with me, for all the obvious reasons -- there's a powerful, compelling, haunting, and beautiful story here. How is this woman? I want to know everything about her. When was the baby born? Are both OK now? I so hope. A study from MD Anderson initiated by my oncologist has confirmed that a women can actually safely navigate a pregnancy and breast cancer treatment -- simultaneously.
   Oddly enough though, when I flipped to the web page for the project, where the portraits advance automatically -- I found the entire collection overwhelming.
   Would I want to see all the portraits -- in one place, at one time? I'm not sure. It is one thing, when I meet with a newly diagnosed women and we talk surgery, reconstruction, scar maintenance, and show each other our "boob jobs." Survivor to survivor: the first thing you do for some newly diagnosed woman is show her. It is an immediate affirmation: look, I went through this, you can too and you'll be OK.
   I thank all the women whose portraits grace this collection; and at the same time, I'm sorry. None of us wanted to see the other this way.
   And that's the God's honest truth.

The Scar Project
Additional resources I like for the young at heart:
Young Survival Coalition
Planet Cancer
I2Y (I'm 2 Young for this Cancer Foundation)
LiveStrong Young Adult Alliance
Anderson Network: Cancer 180

Cancer Isn't Pink

2010-10-12T09:18:00.001-05:00

Cancer Registry by Regina Holliday

There's nothing pink about cancer.

Cancer is uncontrolled cellular growth. Cancer cells are set off by processes not yet understood, especially in breast cancer. Cancer cells multiply, then invade, choke off, and ultimately can kill its host if not surgically removed, poisoned by chemicals or burned by radiation. Sometimes a cure demands all that plus hormonal therapy.

Cancer appears in sentences with words like lymphatic, salvage therapy or necrotic. I've seen necrotic tissue once. Once was enough. It wasn't pink.

When I think pink for cancer awareness what comes to mind is My Little Pony or the color of bedrooms where little girls dream sweet dreams. Pink is a color toward dawn, when the sky begins to change and the possibility of a new day opens before you.

Since my diagnosis I’ve met women with almost every form of breast cancer. The combination of mammography, individual breast health awareness and more effective treatments have led to a 30% drop in the mortality rate from breast cancer. For the majority of us -- around 75% -- our walk through cancer treatment is a one-time event. But this isn't the case for every woman.

Before I finished treatment in 2000 I had attended the funerals of two young women diagnosed with inflammatory breast cancer, a very rare and the most aggressive form of the disease there is.

Theresa Walleye showed me how to laugh with cancer; Judy Hallinan taught me about faith and friendship. The day following my reconstruction (when I was so drugged I had no idea I was even in pain) Judy stood by my bed, clapping her hands with happiness. “Oh,” she said, “you have a new booby," as though this was the coolest thing since sliced bread.

A year after that her cancer recurred in the pleura of her lung. Toward the end of her life, when her breathing became more impaired, her face inevitably changed.

There wasn't one damn pink thing about that, either.

In inflammatory breast cancer, there is almost never a lump. The cancer cells actually BLOCK the lymphatic vessels, leading to the characteristic red and swollen appearance of the breast. The skin is often warm and dimpled, and the nipple in many cases retracts and sometimes inverts. There is a high incidence of IBC in northern Africa (especially Tunisia -- where it is as high as 23% of all breast cancer cases) and when it is diagnosed in African-American women in the U.S., they are typically younger than the median age of 53.

Here’s one dilemma: Unusual and rare cancers do not attract research dollars. IBC is complex and confounding. It is not diagnosed by simple biopsy, but a combination of presenting symptoms.

Curious about this, I wrote to both the National Breast Cancer Coalition, which has set 2020 (arbitrarily?) as the year to end cancer in its latest fund-raising campaign, and Komen-Houston to ask about their funding for IBC. So far I have not received a response from either organization. Then I checked BreastCancerTrial.org where I didn't find anything, and then clinicaltrials.gov. Of the 20 trials resulting when I searched “inflammatory breast cancer” only one was a direct match -- and it's closed.

So there are times when I think pink but see red.

Tomorrow: what now, what next.

Regina Holliday is an advocate and artist who uses her talent to promote health reform and patient rights. You can find her on Twitter at @ReginaHolliday. Please visit her blog at http://reginaholliday.blogspot.com/.

The fastest growing cancer? Not what you think

2010-09-30T19:38:00.076-05:00

Let's hear it for the thyroid. Yeah, the thyroid, that sneaky devil, hiding out in your neck and masterminding your metabolism, has the potential to create all kinds of havoc.
   The incidence of thyroid cancer - in men and women -- has been on the increase since l980 and scientists don't know why. Between l997 and 2006, in fact, diagnoses of thyroid cancer increased at a rate of 6.5 percent per year, faster than rates of breast, prostate, lung or colon cancer, according to the National Cancer Institute.
   The general info about thyroid cancer, like many others, is pretty generic: it's more common in people over 40, those with a history of radiation exposure and a family history. Here's the kicker though and it sounds oh, so familiar: "However, for most patients, we do not know the specific reason why they develop thyroid cancer."
   I know a number of thyroid cancer survivors -- Becky, Dorienne and of course, Kairol -- and they're far from 40. On the contrary, they are young, healthy, and suddenly faced with the anxiety of frequent tests and check-ups.
   Sometimes it just doesn't seem right, does it?
   But the thyroids have something up their sleeves that rates a 15 on a scale of one to ten in my book;
   Humor.
   In 2006, two really funny women established a web page for people with thyroid conditions, including cancer. Dear Thyroid is touching, passionate, supportive. These women are tight and as honest as they come.

   For thyroid cancer awareness month, they established an honor roll. I love it. Anyone who had survived thyroid cancer was invited to list their name, type of thryoid cancer and year of diagnosis. Take a look and celebrate their survivorship with me!
   Tonight September ends and with October comes breast cancer awareness.
   But it's so much more. On Saturday, October 2, LiveStrong events will take place all across the country and around the world. We're all survivors in a global community. One scientific breakthrough in one cancer benefits another. Some of the drugs developed in breast cancer are now used in other cancers. Work on p53 pathways will lead to treatments for a number of cancers. Many of the body's mysteries have yet to be deciphered. But each cancer is complex because each individual is. Let's be prudent, patient, and forward looking about cancer, and do all you can in your life to prevent it, today.

Love you all,
jody

Additional information:American Thyroid Association
Dear Thyroid  Follow Katie Schwartz on Twitter @DearThyroid & @Katie Schwartz

October 4, 2010

After I published this post I heard from my friend Becky Mackenzie, who provided us with a novella of info. She reminds me that when people think thyroid cancer is a “good” cancer a great deal of important information falls through the cracks. With that we also lose our connection of understanding and compassion. Here’s her story.

Becky was diagnosed with medullary thyroid cancer, an uncommon and difficult to treat cancer, in 2009 after a genetic test revealed that she has a genetic disorder called multiple endocrine neoplasia 2A. The disorder involves hyperparathyroidism and pheochromocytomas, or tumors of the adreneal glands. Carriers have an almost 100% of developing cancer. And she found out she had cancer from a genetic counselor at MD Anderson, where she sought information and treatment.
As she wrote for Voices of Survivors last year, "The good news was I didn’t have to do chemo. The bad news was I didn’t get an option for chemo." The only option for medullary thyroid cancer is surgery. Unlike the more common thyroid cancers, follicular and papillary, medullary cancer is not technically cancer of the thyroid. It’s cancer of the c-cells (also called the parafollicular cells) which happen to be located inside the thyroid.

“I may always have this,” she wrote to me. “It’s slow growing, but metastasizes very quickly. Because of this, it can take years and years for symptoms to show and once they do, microscopic cells are already in the lymph nodes. The key with thyroid cancer is to make sure you’re seeing an expert at a center of excellence. I fly from Florida to Texas every six months because I can’t find a doctor that compares to the doc’s at MD Anderson. It’s worth the trip because I run into people all the time that had incomplete surgeries because they went to a doctor that didn’t specialize in their disease. A proper, clean surgery is a must."

Cancer changed her in the obvious, and not so obvious ways. “Medically. I have no thyroid. I also have stable cancer in my body that has to be watched and maintained. That’s a huge change. I need to track levels, go to doctors appointments, make sure I take synthroid appropriately, and accept that I am living with cancer. It just isn’t easy.”

All those adjustments made it hard for Becky to establish the “new normal” and she has made big life leaps in a short time. “I’ve learned to weed out the people and the situations that drain me. I dropped a stressful job that involved a lot of negativity and greed. It just wasn't worth it. But I'm more physically active, more involved in my community and not afraid to say things that probably should be said. I'm better educated when it comes to my health. I take more pride in the things that I do. I have more passion.”

And from my perspective? You couldn't have a better friend. She's whip smart, funny, compassionate, human, and absolutely beautiful inside and out. We spent some time together during one of her appointments here in Houston. I'm glad cancer brought us together.
More of Becky's incredible story --- http://voicesofsurvivors.org/?p=360

She also recommends Dear Thyroid, Kairol Rosenthal, and Thyca (the thyroid cancer survivor’s association), which offers peer support, education, conferences, plus. Thyca has support groups on Yahoo for each specific type of thyroid cancer.