What I learned about myself in a blog hop challenge

Fellow blogger Nancy Stordahl has challenged me to blog hop. As you’ll read, I’ve never done one of these before. I have to admit, I was rather surprised at what I discovered about myself.  See if you agree.

Who are you?
I wonder about this a lot, post cancer. I once was certain about who I was, but now I’m not sure at all. I’d love to be an Audrey Hepburn character living in Paris, driving a red Mini Cooper around the Arc de Triomphe and living in an apartment with ornate pickled-wood paneling and doorlike French windows that overlook some busy Parisian street, hanging out with artists and art gallery owners and spending brooding afternoons along the Seine drinking rich, velvety coffee at an outdoor café. Hepburn died of a rare cancer at the age of 63, only a bit older than I am now. She was deeply compassionate and left a brilliant legacy based on the work she did with UNICEF, bringing the plight of those living in poverty and victims of political upheaval and starvation to the world’s attention.
It’s unlikely at my age that dream will come true (although her legacy gives me food for thought). Now I think I’d rather be the Red Queen in Alice in Wonderland, running around yelling “Off with their heads!” and “Here it takes all the running you can just to stay in place. If you want to get somewhere else, you must run twice as fast.”
“Where do you come from? And where are you going?” the Red Queen asks Alice, who admits she’s lost her way.
I fear I am more like Alice and less like the Red Queen, despite my aspirations.

Share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission”, a challenge you have faced or are facing now, or whatever you want.
I have metastatic breast cancer, which is a chronic disease until it’s not chronic; then it becomes terminal. I was first diagnosed in 2011, then had a recurrence in 2015. My blog is called Breast Cancer Conscript because I feel I’ve been drafted into a war I have no appetite for and yet now am in a battle for my life. As you can tell, I don’t have an issue with the battle metaphor when it comes to characterizing my plight with the disease. It’s the closest I can relate to a military veteran who has experienced a life beyond the ordinary. Navy Seal (and disgraced Missouri governor) Eric Grietens, author of Resilience, puts it best when he writes:
“The frontline was where battles were fought and fates decided. The frontline was a place of fear, struggle and suffering. It was also a place where victories were won, where friendships of a lifetime were forged in hardship. It was a place where we lived with a sense of purpose.
But frontline isn’t just a military term. You have frontline in your life now. In fact everyone has a place where they encounter fear, where they struggle, suffer and face hardship. We all have battles to fight. If you want to win any meaningful kind of victory, you’ll have to fight for it.”
My blog focuses on that fight, including just getting through a day, getting through other life-bombarding tragedies, helping to shape public policy so that it leads healthier outcomes for all of us and hopefully one day for a cure, bringing to light promising research, advice for overcoming some of the issues cancer patients face – from how to make a living while also tending the disease to how to deal with mind-boggling health insurance issues.

Have you ever participated in a blog hop before?
I’ve participated in a sock hop, a bunny hop but never a blog hop before.

What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?
I like to read stories and tell stories and find new ways to do that, whether it’s through pictures, sounds or lame videos I’ve made or any other novel approaches to storytelling. I’m always experimenting and looking to others who experiment.

Describe yourself in three words. Yes, just three!
Stirred the pot.

Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.
Breakfast of Champions by Kurt Vonnegut
Steppenwolf by Herman Hesse
The Man Who Folded Himself by David Gerrold

What’s your favorite dessert of all time?
Anything dark-chocolate based that includes a cappuccino along the left bank of the Seine under a starry sky at midnight.

Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)
I had an Australian shepherd-German short-haired pointer mixed pound puppy named Nietzsche when I was a single, young woman. He used to eat my boyfriend’s underwear and loved to run alongside me when I biked along the river, his tongue hanging out like a ladle. He had a very independent nature (my mother called him “willful”). One night he ran off, not returning until mid-morning, despite my all-night, desperate search for him. His face was swollen from bee stings. I just took him to the vet, letting the secret of the night’s excursion reside with him alone.

What’s something people don’t know about you and might be surprised to learn?
I’m the sewer commissioner in my hometown. My motto: The shit runs through me.

Do you believe healthcare is a privilege or a right?
Right, hands down. And I work hard to secure that right for EVERYONE.

What’s your favorite thing about blogging and/or reading blogs?
I like the connection and the community, but most of all, I love the changes blogging can bring about, from increased research funding to public policy initiatives. Every piece a blogger writes is one step closer to a cure for cancer.

What’s something you really suck at?
What’s something I don’t suck at? is a better question.

What’s something you’re pretty good at?
I’m really good at sucking.

How do you escape from cancer (or life in general) worries?
Ah, if such a thing were actually possible. Cancer is like a shadow, so it’s nearly impossible to escape. I call it “the enemy within” and my goal is to make peace with it until I can annihilate it completely (and I do hold out hope for that day) which helps to relieve any worry I feel about it. Running and staying physically active keeps me sane. Humor keeps me from driving off a cliff.

Here’s what others in the challenge have to say:

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Help wanted: asking for a friend

Long ago (well, maybe 15 years ago) and far away (ok, eight blocks down the street) a single mother was raising four teen-aged children bordering on adulthood, earning her living as a house cleaner when she was diagnosed with breast cancer.
She didn’t have health insurance, so whatever symptoms she had she ignored until she couldn’t ignore it any longer. When she was diagnosed, her doctors offered little hope.
She did her best to continue working until the disease got too much. Her children took care of her until the end. When she died, her children settled her affairs and dispersed. Some got married. A daughter got a job as a bartender and moved into her own apartment. One son had a grandchild she never had the chance to meet. And then another.
At the time, there was no Obamacare, so even if she had made enough money, she couldn’t buy health insurance. In truth, even under the Affordable Care Act, she couldn’t afford it, which meant any care she received was likely funded through charity care at the hospital. And that meant, her doctors didn’t discuss cutting-edge treatment to prolong her life because they wouldn’t be compensated.
And that meant, she had no hope, leading to a grueling and premature death.
Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.
With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.
A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths like the one I’ve described (which is a true story).
“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor, a cancer advocacy group.
METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House, including Republican Brian Fitzpatrick (Pa. -1) in Bucks County. You can bet, I’ll be writing to my congressman, Tom Malinowski, to ask for his support.
In the Senate, it has seven sponsors and none of them are from New Jersey, where I live. You can guess what I’ll be doing as soon as I finish writing this post.
I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.
METAvivor has made it easy for us by providing this script:
 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at deena.tauster@mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at elizabeth.brown@mail.house.gov or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at Emily_Crow@mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at Elizabeth_Darnall@murphy.senate.gov or 4-4041.

While I’d add that this law should cover anyone diagnosed with metastatic cancer, this is the first step.  Those of us living with this disease thank you for your support.  If you’re waffling at all about taking action, I remind you of this poem written in 1946 by German Lutheran pastor Martin Niemoller:
First they came for the socialists, and I did not speak out—
Because I was not a socialist.

Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.

Then they came for the Jews, and I did not speak out—
Because I was not a Jew.

Then they came for me—and there was no one left to speak for me.


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What the Fire at Notre Dame Taught Me

Notre Dame BurnsLike many people, I have an affinity for the renowned Middle Ages cathedral whose roof caught fire two days ago.
I misspent my youth on its steps on the weekends while living in Paris, listening to steel drum bands or drinking coffee at a nearby cafe while shopping for books at Shakespeare & Co which lies in its shadow on the Left Bank.
I visited it later, with my husband, as newlyweds, when the world was filled with hope and wonder and I was carefree. I still marvel at the photos of the statutes ascending the spire I took with a new, telescopic lens I got for Christmas.

Earlier this week, I watched in horror as the roof and spire burned and bit my nails when I read reports during the nine-hour blaze from a Chicken Little Cleric who said the entire structure might burn to the ground.

Meanwhile, 500 firefighters fought the inferno. To them, it wasn’t a fire that occurs once every 850 years. It was a fire they’d trained their whole fire-fighting lives to put out.

As part of their training, they knew there would be massive destruction. And they had a plan. Save the people, save the art, save the altar, save what furniture you can, then focus on the structure, in that order. They knew what can be rebuilt and what can’t.

One brave priest, who evidently was no stranger to church fires, went in to save the artwork, including the coveted crown of thorns Christ wore. Others joined in, forming a human chain to salvage humanity’s creations, which were then deposited at the Louvre a few blocks away.

Now, a few days later, as I digest this story, I have to ask myself, how many times have I heard the interior voice of my own Chicken Little Cleric decrying how this is the end? That there’s no coming back from this kind of destruction?

Meanwhile, undaunted, my own soulful firefighters continue to extinguish whatever blaze rages inside, threatening massive destruction. But unknown to my cleric, they have a plan. They know what can be rebuilt and what can’t. They know what relics to save and which ones to let go.

There’s a story circulating the Internet that oak trees were planted at Versailles 160 years ago in anticipation of a Notre Dame rebuild effort, whether caused by fire or aging or rot. A picture shows, that true or not, those trees line a path into the regal country estate, ready if called upon to be used as supports for a new roof and new spire.

And I think to myself, how much I’ve focused on the rockiness of the path, its uphill nature and the difficulty of the terrain, while ignoring the oaks that line it, ready to offer support for whatever massive destruction has occurred or may occur in the future.

For today at least, I’ve sent my cleric to vespers, asking that voice to pray for a connection to those diligent, dutiful fire fighters within. And in that voice’s absence, I’ll spend time marvelling at those oaks along my path that I seem to have missed, focusing for too long on my footfall.




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Cancer in abeyance, a cold and broken hallelujah

breast cancer cure

“I’ve heard there was a secret chord, that David played and it pleased the Lord. But you don’t really care for music do you?

Last week I got the news every cancer patient wants to hear: Scans show No Evidence of Disease. My cancer is in abeyance.

“It goes like this, the forth, the fifth, the minor fall and the major lift. The baffled king composing Hallelujah.”

Do I feel a sense of relief? Do I want to scream Hallelujah? Absolutely.

“Your faith was strong but you needed proof. You saw her bathing on the roof, her beauty and the moonlight overthrew you.”

Do I want to believe there was something I did right to make this happen? Yes, again. But I also know better.

“She tied you to a kitchen chair, she broke your throne and cut your hair, and from your lips she drew the hallelujah.”

Yes, cancer has been that evil mistress who has thrown me to the ground, made me say uncle, then laughed at me mockingly as I struggled to get back up. Cut my hair? Hell, she sheared it right down to the scalp. And when chemo was done and it started to grow back, yes, she drew from my lips a hallelujah.

“Baby, I have been here before. I know this room. I’ve walked this floor. I used to live alone before I knew you.”

Even with cancer in abeyance, I no longer live alone. She lurks like a shadow within me, rogue cells slithering undetected in my blood, my bones, my organs. As I get back to my life, I struggle with this acceptance. That it’s not over. That it will never be really over. Not until there’s a cure.

“I’ve seen your flag on the marble arch. [Cancer] is not a victory march. It’s a cold and it’s a broken hallelujah.”

It will return. I try to put that out of my head. I try to celebrate this moment, this win. I celebrate with a broken hallelujah.

“There was a time you let me know what’s real and going on below. But now you never show it to me do you? And I remember when I moved in you. The holy dark was moving to and every breath we drew was hallelujah”

A time when I could trust my body, the idea that if I was feeling healthy, I was healthy. That if everything seemed OK, it was.

“Maybe there’s a God above and all I ever learned from love was how to shoot at someone who outdrew you.”

There was a time when everything was clear cut. When I aimed at a target and hit a bullseye, I was done. I’d made my mark and could move on.

“It’s not a cry you can hear at night. It’s not somebody who’s seen the light. It’s a cold and broken hallelujah”

I can not explain what it’s like to live a life turned-upside down, to fight to bask in the light of good news in this moment, despite the darkness that certainly lies ahead. Yes, it’s a cold and broken hallelujah.

All the same, it is hallelujah, hallelujah, hallelujah.

 – Quotes are lyrics to”Hallelujah” by Leonard Cohen.



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#Worldcancerday fosters bonkers advice

#worldcancerdayToday is #worldcancerday and forgive me if I’m a bit cynical. But looking through Google’s news feed on the subject,  I can’t help but wonder if today is the day journalists dug into their pile of press releases to see which ones mentioned cancer, then just regurgitated the information without doing any real research or asking meaningful questions.
Don’t get me wrong. There’s a lot of really great news out there about cancer and the potential for a cure.
But there’s also a lot of craziness that needs debunking. I get why spreading the misinformation is so popular. No one wants to think that there’s nothing they can do to protect themselves from this insidious disease. The truth is though, you really can’t: 85% of all cancers are caused by pure genetic bad luck; 5% are also the result of bad genetics that are known, such as women with the BRCA gene who have a family history of breast cancer like Angelina Jolie, who famously had her boobs cut off rather than risk a chance incurring of the disease. The remaining 10% of cancer cases can be prevented, namely by not smoking. To date, the only known cancer-causing substance is nicotine.
Nonetheless, today’s headlines are filled with inaccurate cautions and prevention strategies. This story claims that if you just stay away from certain foods or certain food packaging, you’re out of the woods. I don’t dispute that carcinogens may be found in the products mentioned. I’m just saying that there’s no scientific research that proves they cause cancer. We’re exposed to carcinogens everyday.  And theoretically, enough exposure over time could lead to cancer. It’s just that at the moment we don’t know how much exposure or how much time, which makes it hard to prevent.

Then there’s this CNN story that somehow determines that a correlation between obesity and cancer somehow makes obesity a cause of cancer, particularly among millenials. Let me explain something about correlations and how they’re derived. You take one number, such as how many people are obese and plug it into a fancy formula with another number, such as how many people have cancer. If it produces a high percentage – say 80% – then mathematicians say there’s a correlation. So let’s say you take the number of pizzas sold at your local pizza place on Superbowl Sunday and match it with the number of kitten videos posted on #Caturday on Twitter and plug it into the same formula to find an 80% correlation. As a rational human being, do you really see a correlation? And can you extrapolate from it that pizza orders on Superbowl Sunday cause out-of-control cat video postings on Twitter on a given Saturday?

MD Anderson’s Dr. George Chang, who’s quoted in the CNN story, says it best: “The study was not set up to establish causation. We know there are many factors that are associated with both obesity and cancer, such as lack of exercise and poor diet. How much each of those factors contribute to cancer is less clear.” Somehow that information is buried deep within the story.

Then there’s this well-meaning piece that confuses early detection with preventable deaths when what they’re really trying to prevent is costly treatment.

“By detecting cancer at its earliest stage, we seize the greatest opportunity to prevent millions of avoidable deaths worldwide,” the Union of International Cancer Control’s chief executive officer Dr Cary Adams said. But read a little further and really what he’s suggesting is that detecting cancer can buy five year’s worth of life, which really isn’t a cure and certainly doesn’t prevent millions of deaths. Perhaps prevents millions of premature deaths would be more accurate.

The real news on World Cancer Day is what’s being done to cure cancer or at least make it a manageable disease. Unfortunately that information hasn’t percolated through Google’s news feed, although it did make my inbox. Take for example this update from the Cancer Research Institute on what’s on the horizon for immunotherapy. As CRI’s review notes, if diet has any impact on cancer at all, research shows it’s through a healthy gut microbiome. That means eating more yogurt, high-fiber foods and fermented foods or drinks such as kimchi or kombucha. Somehow that point has been missed by all the “prevention” and “eat this not that” enthusiasts.


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Personalize Medicine: A Personal Story

breast cancer

Maybe you’ve heard of it: Personalized medicine. Or sometimes it’s called precision medicine. The idea is that through a series of tests, researchers decode a cancer patient’s DNA plus the DNA of the tumor to see what’s gone wrong. Then they find drugs to “fix” or bypass the problem in hopes of creating a cure.

For some cancers, this has gone splendidly well. For certain types of blood cancers and even rare cancers, it’s been a game-changer.

Breast cancer, though, is still in precision medicine infancy. And for me, who only has cancer in small spots on my bones, it’s been a fight to even get a seat at the table. Part of the problem has been that biopsies of bone tumors are unreliable. That’s because the tumor mixes in nicely with the bone, so that when a sample is taken, you need to separate the two, usually by dunking the sample in acid to disintegrate the bone. You don’t need to be a rocket scientist (or even a cancer researcher) to figure out that that’s going to be a problem that could alter the tumor cells.

My first biopsy to take advantage of this new research was two years ago. The sample wasn’t good enough – there weren’t any cancer cells in it. By the time I got the results, I was on a treatment that was working so my oncologist recommended waiting until it failed (plus, I imagine the health insurance company weighed in, refusing to pay for two biopsies so close together).

This past summer that treatment stopped working and it was time to take a look at new options. I underwent another biopsy and this time – hallelujah! – there were cancer cells in the sample. Not a lot. Only 20% of the sample  was cancerous. The rest were normal cells. Pretty remarkable, if you ask me.

The findings: My DNA, as far as they can tell, wasn’t preprogrammed for cancer. That means the cause is likely environmental.  As far as the tumor’s DNA, researchers could only find three things wrong with it. For one, my AKT1 “is mutated at low frequencies” – meaning the gene is broken. This gene has to do with putting together proteins so the cell can carry on healthily. I also have an amplification of two genes – PAK1 and PTP4A1 – meaning, there are far more of them than a healthy cell needs or has.

The good news is that there is a drug in clinical trials called AZD5363 that turns off the AKT1 gene. More specifically, one of the three clinical trials available targets breast cancer, using the drug in combination with both an anti-estrogen drug and an anti-androgen drug. Turns out, my tumor is scarfing down both of those hormones.

The bad news is that it’s very unlikely I’ll qualify for the clinical trial because my cancer is only in my bones, a clinical trial exclusion. Researchers like to look at tumors they can see, not tumors mixed up with bones that are hard to get a read on.

Still, I’m not undaunted. For now, I’m on a low-dose chemotherapy drug called Capectitabine that seems to be working. My blood tests are coming back nearly normal. I’m heading for a PET scan in two weeks which will let me know for sure, but so far my blood tests have been reliable. According to research by the MBC Project, this drug seems to work for a longer period of time than other treatments. I’ve been getting about 18 months out of a treatment before it fails. It would be great if I could get more time than that.

Second, the FDA is liberalizing it’s “compassionate use” policy. This allows a patient like me to appeal for a promising drug, even though I wouldn’t be included in the clinical trial. It’s a deal the pharmaceutical company or researcher would also have to sign off on (particularly because they offer the drug for free under compassionate use). A recent study showed that when asked, drug companies usually say “yes.” We’ll see if that changes with the new FDA policy.

Fighting cancer is a lot like playing pool. The goal isn’t just to sink a ball into a hole, but to also line up the next shot. For me, that means reaching out and making contacts among researchers, drug companies or the FDA who will be beneficial when this treatment fails so I’m not flailing around when it does. I learned this past summer, the appeals process can take longer than I have to give it.  I just don’t have time for the learning curve.

In the meantime, I’m tuning up my brain, reading books like The Organized Mind” Thinking Straight in the Age of Information Overload by Daniel J. Levitin, which has a chapter titled: Organizing Information for the Hardest Decisions When Life is on the Line. I’ve learned that going forward I’m going to be forced to make life-altering decisions with limited information that is constantly changing.  I may make a decision today and tomorrow get new information that would change the decision entirely. Sometimes I can change my plan based on the new info, sometimes I can’t. The best I can do is prepare a strategy that allows me to evaluate the best option in the moment.

For now, that will have to do.

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