This week many people have been shocked by the drastic measures Angelina Jolie took to prevent breast cancer. They ask: Why not just be more vigilant and catch it early instead?

As someone who’s been there, let me take you on a little journey into surveillance when you’re BRCA positive.

You’re sitting in the radiologist’s waiting room. You had a mammogram last week and they called you back for a second look because there was something they couldn’t quite see well enough and since you’re BRCA positive, they’re extra cautious. Double that if you have dense breast tissue, which makes your breasts a particularly evil Where’s Waldo scene. (Mine were so dense that when I had exams, doctors would go round up all the med students and interns so they could learn what dense breasts felt like.)

You’re cooling your heels in the waiting room rather than heading home because the radiologist wants to talk to you. Swell. Your phone rings. It’s your sister informing you mom is back in the hospital – her cancer has returned. The nurse calls your name. The radiologist found a small mass in your left breast. A little calcification. Probably nothing. But it has a tail on it – possibly a sign of something moving along a duct.

“We need to biopsy it. Have you had aspirin in the past ten days?”

“Yesterday.”

They set an appointment for a biopsy in nine days, which you sweat out, while your brain rummages through the closet of your brain, trying on every nightmare. Biopsy day finally arrives, but that morning there’s worse news. Mom’s cancer has metastasized throughout her body. They’re going to try chemo, but it doesn’t look good. You lie face down on the table, breast dangling and harpooned by long needles, imagining the great mother daughter days ahead, bald and vomiting into matching plastic trays.

Then you wait some more, trying to get a little work done, trying not to snap at people you love. The call finally comes. Benign! It’s like your birthday, New Year’s Eve and getting out of jail all at once!

All too soon you’re back again. Most BRCA1 breast cancers are triple-negative – the kind that can blossom and spread in just a couple months, so you can’t wait long for another check. This time it’s an MRI. They put an IV in your arm for the dye and squeeze you into a narrow, clanking tube. It takes about a year and you wonder if you’ll ever breathe (or hear) again. The next day the phone rings. They found a suspicious mass in your right breast. It looks like a tangle of abnormal blood vessels. Swell. This time you were smart and swore off aspirin weeks ago so you get an appointment in a few days to come back for an MRI-guided biopsy. Back in the clanking tube! Only this time with more needles.

Then you wait. Again. Jumping every time the phone rings. Wondering how disfigured you’ll be after a lumpectomy, how badly will radiation burn your skin, who will make soup and sit with you and stroke your brow now that mom is gone? The call finally comes. Benign again! It was a complex cyst. Once more, you beat the reaper, but the celebratory bloom is off the rose.

So let me ask you. How many times will you do this, knowing they’ll find something every time? Maybe you’ve got decent insurance now, but what happens when you retire? When you change or lose your job? Who pays for all those MRIs at $1000+ a pop? If you have a mastectomy now, it’s done and paid for. If you have a mastectomy now, it’s just a mastectomy. If you wait, it’s a mastectomy, chemo, radiation and possibly death. The future is a vast unknown with a giant C on it.

Let me ask you. Who is the real you? The happy, focused, vital woman who made the drastic choice to “mutilate herself” and then move on? Or the physically intact, natural “as God made you” woman who lives in dread of the next round of surveillance, who, with nearly certain odds of the deadliest form of breast cancer, knows that her dread is justified?

Let me ask you. When they talk about the numbers of women who choose surveillance, how long do you think that’s for? How many switch camps after a few rounds – either because they can’t bear it anymore or because cancer made the decision for them? Some do stick it out and I salute their courage. I couldn’t.

Let me ask you. Whose decision is it? And who are you to judge me for it?

There have been so many negative comments about Angelina Jolie’s supposed breastless and no longer beautiful status that I decided to go public to let you see how far reconstruction has come. Because, clearly, there are a lot of misconceptions about it! Here are my new girls, one year post-op. Photo by my husband, completely unretouched.

I had “flap” reconstruction – where they use tissue from another part of your body to construct the new breasts. In my case, they used fat from my ass, in a whole section, not liposuctioned and squirted in like the filling of a twinkie. They carefully reconnected the blood supply, so it’s warm, living tissue. Like Angelina, I kept my original skin, including the nipples, but everything except a very thin layer of skin was replaced. It may be hard to see, but there is a scar around each nipple, one down from the nipple to the base of the breast and another like a smile under each breast. The scars will continue to fade for at least another six months. I wish they could have reconnected the nerves!

There are lots of different options for reconstruction and what’s possible may vary depending on your circumstances. My insurance covered 80% of this. Angelina had implants as I doubt she has a spare fat cell in her body, but I’m sure they are magnificent.

So tell me, am I flashing or mooning you?

And more… Here is my appearance on Q13 Fox News in Seattle, Thursday, May 16:

The world was stunned this week to learn that Angelina Jolie invented genetic cancer risk. Well not really, but she’s certainly put it out there in a big way. And I thank her for her candidness about this very personal issue. I’m sure she knew she was opening herself up to a shit storm of criticism along with the monumental support she’s received. But the criticism, which has been upsetting to those of us who carry the same mutation, has a good side too. It gives us an opportunity to educate. And to that end, I’d like to clear up a few myths.

Myth #1: Angelina doesn’t have breasts anymore.

Truth: She does too. And they probably look (and feel) almost the same as they did before. Mine do. She still has the same skin and nipples she was born with. It’s just the filling that has been replaced. Sadly, they’ll be permanently numb. That’s one of the really sucky trade-offs, but the nerves pass through the breast tissue, so they go.

Myth #2: It’s fine for her. She’s rich. Normal people can’t afford this.

Truth: There is some truth to that, but not as much as you might think. It’s not much comfort to those without insurance, and I honestly don’t know what’s going to happen under Obamacare, but right now, if you have insurance it may well cover the test, the mastectomy AND the reconstruction. You might have to do some homework and wrassling, but if you have a very suspicious family history you can argue for the test – my sister did so successfully after initially being denied. And if you have the BRCA mutation your insurance probably covers mastectomy, even if you don’t have cancer. And if your insurance covers mastectomy, it’s FEDERAL LAW that it must also cover reconstruction – whether you had cancer or not. It is NOT considered cosmetic or elective. The Supreme Court is currently looking at the gene patent that has resulted in the test being so costly. Hopefully, that chokehold will be released and the price of testing will come down.

Myth #3: Why not just get more mammograms and treat it if you get cancer?

Truth: Have you ever endured or watched someone endure “treatment”? Chemo and radiation are hell on the body. Radiation can actually lead to other cancers. Chemo is POISON. Hormone blocking drugs like Tamoxifen have no effect on most BRCA-related cancers. Despite all the pink ribbons, breast cancer is still the second leading cause of cancer death among women (after lung cancer) and long term survival rates are not rising much. I felt my choices boiled down to: surgery and no cancer or cancer AND surgery AND chemo AND radiation. Would you play Russian Roulette with a gun that had one empty chamber?

Myth #4: Nobody dies of breast cancer any more.

Truth: It’s true! Nobody dies of breast cancer. They die because breast cancer has spread to vital organs. The myth that breast cancer is curable is pervasive, but sadly untrue. Many of the “cures” are due to the types of cancer that are being detected by mammograms and treated aggressively. Some types are very slow growing and would likely never spread. Many doctors believe they may not even need to be treated at all but merely watched – like prostate cancer. At the other end of the scale is “triple negative breast cancer.” This is the most deadly kind. It does not respond to hormone therapies, it’s aggressive and it metastasizes at microscopic sizes. By the time a mammogram or even an MRI can detect it, it’s already spread to other parts of the body. A whopping 75% of breast cancers in BRCA+ women are triple negative. Compared to 15-20% in the general population. And I’m supposed to risk those odds to keep my breasts? I don’t think so.

Thank you for letting me get this off my chest. Keep the ignorance coming. I welcome the chance to explain. In fact, I’m going to start an occasional feature in this blog called “Ask the Mutant.” Send me your questions or share comments you’ve heard and I’ll do my best to answer.

Would you consider hosting a show? Or maybe you know someone who would?

I am looking for as many opportunities to do The Mutant Diaries as I can between now and my London show on June 13th.

If you are in the Seattle area and can get at least 10 people together, I’ll come to your home, your office, your school, your club, your church, your community center, etc. and entertain. I bring everything I need to do it. It runs an hour. You just need to provide the place and the audience. Chairs and snacks are nice too. If people are willing to chip in $10 or even just pass the hat, that’s great.

My schedule is flexible. Days are fine. But act fast. It has to be between now and June 9th. Please contact me at eva@evamoon.net.

Thank you!
Eva Moon

More info about the show: http://mutantdiaries.com/
http://facebook.com/evamoonandthelunatics - like us!

On Saturday, April 6, FORCE Seattle will present a benefit performance The Mutant Diaries: Unzipping My Genes. Here is the announcement from FORCE:

In case you missed it, we have an amazing fundraiser coming up. Prepare for a night of music, laughter, great food & drinks, and an opportunity to celebrate our empowerment.

One of our own FORCE members, Seattle performer/composer Eva Moon, faced her BRCA mutation diagnosis in a most unusual way. She wrote a one-woman musical about it! We are so excited to share this performance with all of you on Saturday, April 6th at 9pm at Egan’s Ballard Jazz House.

Tickets are $20 in advance, $25 at the door. Space is limited so buy them soon! Of course, proceeds go straight to FORCE.

Reservations recommended before purchasing tickets: 206-789-1621 during business hours or reservations@ballardjamhouse.com.

More on the show here: http://mutantdiaries.com

Buy tickets here: http://mutantdiaries.bpt.me

Here are my Top Twenty Reasons Why Listening to Music is Better than Sex. Any others?

1. One song will not get jealous if you listen to another.
2. You can listen to music for hours without getting sore.
3. Multiple musical orgasms: no limit
4. Your favorite song will always be there for you.
5. No one asks you to put condoms on your ear buds before putting them in your ears.
6. Group sing-alongs are risk free.
7. No one has to sleep in the wet spot.
8. Music won’t mind if you fall asleep while listening.
9. If you admire a friend’s music he’ll probably share it with you.
10. It’s legal to pay a professional for music.
11. Good music is easy to find.
12. Forty years from now you’ll still enjoy music.
13. It’s socially acceptable to listen to music in public.
14. You can listen to different pieces of music every day.
15. Listening alone is just as fulfilling as listening with a friend.
16. Music is always ready whenever you want it.
17. When you listen to a song you don’t have to worry about who else has listened to it.
18. If you don’t finish a song, you won’t get a reputation as a “song teaser.”
19. The length of the song doesn’t matter.
20. You don’t have to put down your beer to do it.

Here’s an image version of the list:

When we first started doing amplified sound at our gigs, it took FOREVER to set up. Something would end up plugged in the wrong way or into the wrong thing, horrible squeals would emerge. Or no sound at all. The troubleshooting would begin and we’d be sweating the start time. But we got better at it. Now we can roll into a gig at 7:40, rig the PA, sound check and have time to grab a beer from the bar before an 8:00 downbeat.

When I first started making baklava, it took FOREVER. Something would go wrong: the phyllo dough would stick or tear or dry out, the cuts were uneven, I’d forget to preheat the oven, the syrup ready too soon or too late. But I got better at it. Now I can start chopping nuts at 2:00 and pop the pan in the oven by 2:20 and bring the syrup to a froth just as the timer goes off.

This is the way it should be: The better you are at something the quicker you can do it. But it’s not the case with exercise. The more fit you are, the more time you have to spend doing it for the same benefit.

I used to be worn out by a workout in the time it took me to find my shoes. Now I can’t get that smug “I worked out” feeling in less than two hours. And it’s getting worse.

I blame the fitbit I got for Christmas in part. It’s an evil little device – weirdly addictive. You clip it to your clothing and it takes over your life. It tracks every step taken, flight of stairs climbed, calorie burned. It gives you goals. Why should I care about the goals? What difference does it make if I take 9,998 steps in a day or 10,000? What difference does it make if I run upstairs without the fitbit on and don’t get credit for it? But I’ve considered asking my husband to walk the thing upstairs for me so that I’ll get the credit.

It’s a grown-up’s Tamagotchi. It even has a little flower that grows if you’re active and slowly dies if you sit.

It actually wasn’t too bad until fitbit social unleashed a monster. I now have several “fitbit friends” and I can see our rankings at any time. I have found that I have a serious competitive streak. I must win. Neither rain or sleet nor dark of night will keep me indoors if someone is gaining on me. Then, one day on a walk, we decided on a lark to keep going to Redhook Brewery. That makes a 10 mile round trip. 23,000 steps, baby. So now I have to not only win, but if I’m not ahead by at least double I start to panic. Let me tell you though, a 10 mile hike with a brewery stop in the middle takes a serious chunk out of a day, but is a highly doable thing. We’ve pledged to do it once a week. But I get to drink beer AND feel smug.

Then, my sister and dad did the 10 mile hike on MONDAY too. The bastards! They’re winning! Gah!

The better shape I’m in the longer it takes to make progress. Running is not an option. There would have to be a port-a-potty about every 90 paces. I’ll start running when something is chasing me. And it better have razor sharp claws.

Well, I need to finish up this post. It’s already after 2:00 and I still have 9471 paces to go before I sleep…

-=-=-=-=-=-=-=-=-=-

UPDATE: I fed the beast. For now. But tomorrow… oh God… it just starts over again.

From the SnoValley Star newspaper:

One-woman musical looks back with laughter at a tough call

She calls herself special.

In 2011, Eva Moon’s mother had tested positive for the BRCA 1 gene. That twist of DNA means there was a 50-50 chance she and her two sisters had the gene, which skyrockets a person’s chances for developing ovarian and breast cancer.

All three got tested. Sister negative, other sister negative, Eva positive.

“I’m the special one,” Moon, an actress and singer from Redmond, said with a laugh.

Eva Moon, singer and actress from Redmond, performs her one-woman musical ‘The Mutant Diaries: Unzipping My Genes.’

About 1 million people in the U.S. carry a known BRCA mutation, said Anna Satusek Kuwada, outreach coordinator for FORCE, a support group for people with hereditary breast and ovarian cancer. So Moon – and Satusek Kuwada — are indeed special.

To combat the odds of getting breast cancer, Moon started making plans for surgery right away.

The surgery – surgeries, actually a hysterectomy and mastectomy— were daunting. If she were to forgo the procedures, her odds of getting cancer were nearly 90 percent.

“I had friends who tried to talk me out of them. ‘You still have a 13 percent chance of not getting cancer,” said Moon, who created a one-woman musical comedy about her journey called “The Mutant Diaries: Unzipping my Genes.”

“My response was , ‘would you fly on a plane that had a 13 percent chance of not crashing?’ I was very confident I was doing the right thing,” she said.

The hysterectomy required little second-guessing. Both mom (uterine) and grandma (ovarian) had fought battles with the Big C. Grandma had lost hers and mom would fight one more year until ultimately succumbing in 2012.

The mastectomy was a different story. It cut, she said, to the core of feeling like a woman.

“It was a bigger thing to give up for me,” she said. “But I didn’t want to wait until after I had cancer.”

Besides, during this time, she was watching her mother die of cancer. This only made her resolution stronger to have the surgeries.

“You just do what you have to do,” she said, adding that every human has to face challenges.

In a way, the show itself was a challenge. She had the mastectomy in February, 2012, reconstructive surgery in May, and then in late summer, she decided to write a song about it.

“It was called “Ta-ta, tatas,” she said. She played it for a friend who suggested she do a show. Within a week, she had a draft of it, with nine songs and a monologue.

“It came out really fast,” she said. “It must have been needed to come out.” She did not want to write one at first, thinking that repeating her story over and over might keep her stuck in her past pain.

“It hasn’t been the case at all,” she said. Instead, she’s planning to take her show overseas, with one night scheduled for London in the summer of 2013 and two nights, Jan. 18 and 19 scheduled for North Bend’s Valley Center Stage.

“I’m so glad I wrote it,” she said. “Every word of the show is the absolute truth.”

The show, she said, is anything but a downer.

Satusek Kuwada agreed, calling the show brave and beautiful.

“It has the potential to not only provide a voice for the thousands of women like us living with a BRCA mutation, but to educate and make aware a much larger audience,” Satusek Kuwada wrote in an email.

The show, she said, carries a message to people that they can overcome these challenges.

“There are so many women out there for whom this is still in front of them or some other challenge they face, it doesn’t even have to be cancer,” she said. “I have an opportunity to stand on a stage and tell people that you can get through hard things and you’ll still be yourself. You will still be whole in some way. You have a wonderful life ahead of you, even if you can’t see it.”

Sebastian Moraga: 392-6434, ext. 221, or smoraga@snovalleystar.com.

If you go

The Mutant Diaries:

Unzipping My Genes

•  A one-woman musical written and performed by Eva Moon
• 8 p.m. Jan. 18-19, Valley Center Stage, 119 W. North Bend Way, 831-5667.
• Tickets are $12.50 and $10 for senior citizens. Tickets: http://valleycenterstage.org