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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Happiness breast cancer

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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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Right to Try is a lie

I will prevailWhen the President signed the Right to Try law at the end of May, I suddenly went from persona non gratis as a #preexisting condition to a terminally ill darling  whose life Congress and the administration were gushing to help save.

That was until yesterday when I actually tried to use the law to my benefit.

Maybe you’ve heard of this thing called “Precision Medicine” which is ushering in a new age in cancer treatment. Thanks to DNA decoding, cancer patients like myself can have their tumor’s DNA decoded to see if it offers any new information for treatment options.

In my case, new pathology shows my tumor is 100% androgen positive, in addition to being estrogen positive. That means the tumor, now deprived of its estrogen feast because of the numerous anti-estrogen drugs I’ve been on, is now slurping down androgen to survive.

The problem is the anti-androgen drugs on the market are so far only approved for prostate cancer, not breast cancer. There are clinical trials underway for breast cancer, but I don’t qualify for them.

That’s where the Right to Try law offered some hope. Its goal, at least we were told, was to give terminally ill people like myself the option of trying drugs that weren’t yet approved by the FDA for treatment of my type of cancer, but had shown promise. All I needed to do was sign an informed consent that said I am willing to serve as a guinea pig and accept all the risks that come with it.

I knew going into it there would be appeals and denials. One thing I didn’t expect was how cavalier my pharmacy benefits manager Prime Therapeutics would be. My oncologist scheduled a peer-to-peer appeal – where their doctors hear out her arguments over the benefits of this drug – to take place while she was on vacation. For whatever reason, they couldn’t make the call and rescheduled it a week later.

I’m only a terminally ill patient who’s not on treatment. What’s another week’s wait?

That appeal was schedule for 11 a.m. yesterday. When the panel failed to make the call, my oncologist’s team went to work tracking them down. An hour later the benefits manager sent an email saying the appeal wouldn’t be heard. End of story.

Obviously I was frantic. Didn’t they know about this Right to Try law? Certainly my patient rights have been violated. I spent the next hour looking for news articles, testimony, anything I could find about it. Finally, I found the text of the law.  One, single page. I’ve never known a law to be written so succinctly.

When I read it I learned that it offers patients nothing, in fact it expressly states that it creates “no mandate or entitlement” for patients. The only thing it does is let drug companies off the hook should they agree to offer me the drug, it doesn’t work or I get some horrific side effects and want to sue.

This point was completely missed by the press coverage of the new law, which went to great lengths to talk to doctors who obviously don’t spend a lot of time with the “terminally ill”  but were more than willing to talk about how innocents like myself were now sure to be duped or misled by the holy grail of a treatment promise.

Even the law as it’s written seems to see those of us who are terminally ill as frail, bed-ridden, desperate folks looking for some Hail Mary pass that will buy us a few days or a month of life.

Sorry folks, that’s Hollywood, not life. Most of us live quite active, robust – even athletic lives. The way we extend those lives is a series of running plays – drugs that we’re guaranteed at some point will stop working, but that have added days, months, sometimes years to our life.

The more drug options we have to stave off our disease, the longer we have to live. And hopefully somewhere in that timeline a more effective treatment comes online.

In order for a Right to Try law to be effective, it needs to address all the players – the drug companies, the health insurance companies, doctors, hospitals, patients, caregivers and researchers.  And we need to see ourselves as part of a team whose goal is to create optimum health, quality of life and longevity.  We need to lose this “us against them” mentality where the patient seems to be the biggest loser.

There’s a lot of reason to hope with what’s going on in the world of cancer. But what’s the use of any of it if patients can’t take advantage of the progress being made?

 

 

 

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Nancyspoint reblog: Bending into the wind

I’m pleased to share the second #MetsMonday featured post. This one is from Liz Johnson, blogger at Breast Cancer Conscript. Liz was diagnosed with metastatic breast cancer in February 2015, less than four years after her initial stage 2 diagnosis. 904 more words

via “Bending Into the Wind” by Liz Johnson – A #MetsMonday Featured Post — Nancy’s Point

The math of life

While none of us can know how much longer we have to live, being diagnosed with an incurable cancer makes you start doing some math in your head.
In my case, estrogen-positive, bone mets only patients have a median lifespan of 8.6 months from diagnosis, at least according to the latest statistics. That means half of us die before reaching that number, and half of us live longer. It’s not an average, which would be near impossible to calculate. The National Institutes of Health barely counts those of us who have metastatic breast cancer. While we do know one of us dies every three minutes, we don’t know how long each one of us lived with disease before succumbing to it. We also don’t know the particulars, such as what stage they were when they were first diagnosed, the pathology of the cell or where the cancer lodged when it metastasized.
With Artificial Intelligence and machine learning getting into the game, we will soon be able to track that information and make a more reasonable guess. But for now, here’s the equation I’m toying with.
I have 8.6 years median survival. Research shows if I exercise, I can add 40% to that total. That gives me another 4.8 years. If I  develop a strong social support system and have adequate access to a medical team who can answer questions, add another 5 months.
So far I haven’t been able to find any research that shows that diet directly affects lifespan (if anyone knows of a study, please share).
Based on those calculations, I have a median survival of 13 years and 10 months. I’ve already survived 3 years and 2 months of that.
On the plus side, being treated at a research facility like Memorial Sloan Kettering gives me another edge. There’s a very strong chance that the cancer research facility will be host to a Phase 3 trial of the next viable, life-extending treatment, which I’ll be able to get into.
That cuts out the six months it will take the FDA to approve the drug once the trial is complete, the year it will take the pharmaceutical company to get it’s marketing pipeline up and running to offer the drug to the public and the six to eight months it will take ASCO to announce it as a standard-of-care treatment and for health insurance companies to agree to pay.
That means I’ve cut at least two years off the time it would take me to have access to the treatment in a community hospital setting.
It’s not a perfect science, nor is it a perfect equation. But until Big Data has a better answer for me, at least I have a benchmark.
And every day the finding of a new study is announced, giving me another chance to add more time onto the clock.
Einstein was right, space and time are relative. limited only by the speed of light. With strides being made at an exponential rate, cancer research may soon catch up to light speed. At that point, the impossible becomes possible.

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A river runs north

May 1 is a day of seduction.
Without fail, it arrives cloudless and sunny, warm and fragrant, casting off the vestiges of a cruel winter.  Fear? Toss it out the window. Success is an open road looking for someone to tear it up.

I remember feeling that way 10 years ago, before the Nishisakawick Creek coughed up its sedge to form an island where its mouth meets the Delaware River. Back then there were a few scant sycamore trees that jutted up from the river, catching dead leaves and twigs in the rapid flow. There were no signs that the island would one day block the creek’s entrance, forcing the river to flow up instead of down. Had I seen it, I tell myself, I would have known.

But the truth is, we never really know life’s irony until it stares back at us from the page. And this story is no different. May 1, 2008, I started out on a morning of hope, launching a new business with my mother and father as partners. Sure, we had failed as a family unit. They’d divorced some 30 years earlier. But we’d learned from our failures. Time is a great healer, afterall. We were no longer mother, father and child, but adults who had experience in the world. Our business venture was destined to succeed.

As I made my way down River Road that morning, fire police detoured traffic onto Dark Hollow Road where I’d normally turn anyway. A sign, I was sure, that I was on a guided path. “A tree down,” I thought before losing myself in other mind chatter.

My mother would arrive late, complaining about a power outage that kept her from drying her hair. We huddled, vowing to knuckle down, make calls, do whatever it took to make this venture work.

Uneven road ahead

Only now do I see the irony. Yes, a tree did come down, ill-timed, crushing my stepfather’s car and killing him instantly. Nine months later, my father would be diagnosed with lung cancer. Our fledgling business venture would be buried along with him. My sister’s crazy outburst at his funeral wasn’t inconsolable grief, but a softball-sized tumor lodged in her brain.

I’d pay only scant attention to the thickness I felt, like a jelly fish, in my right breast while showering at my father’s house after his death. “Perimenopause,” I thought, before my mind wandered to the mold in the grout lines and whether I could adequately clean them or would need a professional before I could put the house up for sale.

By then, a large tree trunk had lodged between the river sycamores and on a sun-baked August day if you looked real hard you could just about see the sedge that was starting to mound at their base, not even enough ground to stand on.

Running in place

The next May 1 I was in Jacksonville, Fla. helping my sister navigate a life, post-cancer, that had taken a chunk of her brain and part of her mind, leaving her at times manic and at times depressed. It would be another beautiful, cloudless day. She would come and watch me run a 9K race, sitting on a curb, throwing up in the gutter from the mega doses of steroids she was on to reduce the swelling caused by the brain radiation. My mother was there. A new venture. Not of our choosing. One that had us chaffing life’s bit.

By the next May 1st I was bald and scarred, recovering from chemo and surgery. It was cloudless and sunny and my neighbor would insist on me joining her for a long walk with her dog along the river. The river sycamores were getting thicker, their trunks bent over nearly parallel to the fast flowing river. A piece of opaque, ragged plastic got caught in one of them, rattling in the wind like a sail.

Rising from the ashes

The next May 1st, cloudless again, the plastic gone and with it wind from my own sails. I’d buried my sister nine months earlier and felt bewildered by the world I was now living in. By now, the sedge had settled, forming two islands just off the river banks. Enough ground to walk on with a sedge sandbar starting to fill in between the two shorelines where marshy grass grew. By summer, the marsh choked the creek flow, pushing the river northward along one of the islands.

I made friends with the kids who moved next door and we’d spend summers exploring the islands, looking for fossils, feathers and bones, making up stories about where they’d come from or how they’d landed there. Taking picnic lunches, throwing sticks for the dogs and swimming.

We built a bridge across the north flowing river so we could get to the island without getting our feet wet. Stone pile sculptures magically appeared, as did a stick hut where we could hide out from the strong, summer sun.

Finding a new flow

Three  more May 1sts passed, all cloudless, sunny and warm. My hair grew back, and so did the cancer. The new drugs I was on fought it back until the river flowed north again that summer. By then, people were finding their way to sedge island to fish, leaving trash and the rotting spoils of their catch. Scrubby shrubs filled in between the sycamores. The kids were now older and we stopped our treks to the island, except for the dogs who still liked to walk its perimeter while chasing sticks.

Last May 1st was dark and overcast, and yet my mood was buoyant. I’d just come home from a writing retreat with plans to sign up for summer triathlons, eat healthy and start writing projects anew. I’d moved my treatment from a community hospital to a research setting. The new regimen was working and my options for future treatments, endless. I’d weathered the emotional move from one oncologist to another.  The river flowed north, but I was used to it.

Defying logic

Here I am today, another May 1st. Sunny, cloudless, warm. Tonight I’ll go to dinner with my husband and my mother. We’ll talk about my stepfather, our losses and the ones we still have yet to endure. The sycamores on sedge island are now about 15-foot tall, standing nearly upright. A bore infected the aged ash trees along the river bank. Their rugged bark looks starkly naked against the backdrop of the maples now budding. On my way back from the river, I walked past  pear trees in bloom. The pleasant fragrance caught me off guard. My throat tightened and tears welled up.

Life has turned upside-down. An author whose book on resilience got me through my darkest hour is now under indictment for enslaving a woman and taking photos of her. His words which once soothed now ring hollow. My family as I knew it has gone. Others have abandoned me, replaced by new friendships with deeper roots.

Yesterday I ran a half marathon with my other sister, her husband and my husband. We went out for lunch afterwards and my niece and nephew fought over who would sit next to me. This summer, I’ll take them to sedge island. We’ll look for artifacts and make up stories and I’ll show them how, defying all logic, the river runs north, but still it flows.

 

 

This post is dedicated to Stephen R. Hance, 1948-2008, who believed in me always. Pictured here, with my late sister Tracy Johnson Pollick. They always remind me that no matter what direction life takes, go with it, because even when a river flows up, it will eventually find its way down.

 

 

 

 

 

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