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Monday
Jan062014

Grout Me Out

Hey my people,

Opinions please: Does a cancer diagnosis bring on DIY fever? That's how it's been for me. My temperature registers in the lower end of the spectrum, I admit: When I get a grand idea, like making a little covered hut out in the yard to house all that exercise equipment we never use, It takes all my energy to buy the list of materials. Every label has to be read and, half the time, deciphered with the help of YouTube or Wikipedia. Is it water- or oil-based? Toxic to children and animals? Long-lasting? Quick-drying? Does it require molly bolts? (I am not interested in molly bolts. The term sounds like a Revolutionary-era sexually transmitted disease.)

If you're like me, you spend a lot of time whipsawed between that cancer-survivor urge to take control of your environment and the chemo-brained reality that you are willing to exert yourself only in short bursts and then only on ideas you've already had.

I do get tired of the half-assedness that plagues all my projects. Also, it's new year's resolution time. So when my nephew-in-law, a professional tile guy, explained how to regrout the kitchen counter, I decided to Do It All the Way.

I was at it for three days, digging out all the nasty-greasy old grout in preparation for the fresh batch. Then came the rubber gloves, the cool water--not too much!--the bucket, the stirring, and, in about two minutes, the frenzied race to the finish. The instructions said to ply the tile float at a nice even pace, just ease that grout on into the crevices. Yeah, well. Not the way this stuff was drying. I wound up tearing around the counter at a dead run, raking big globs of black muck out of the bucket and stuffing it into every hole I could see.

It was like finger painting. It was fantastic.

There was collateral damage, it's true. Talk about the fog of war: There is now a thin layer of gray-black grout all over me, the floor, the dog, and the cat.

But I did it. No pile of unused supplies taking up permanent residence in a corner until I forget what they were for. No big swath of countertop left undone, with the promise to resume "next weekend," meaning "never in this lifetime."

No, for once I followed all the way through. That's what I told my nephew.

There was a brief silence on the phone. Then he asked, "You regrouted the whole kitchen?"

Wednesday
Jan012014

Skydiving.

Hey my people,

As we unwrap this gift of a new year, I find myself thinking of friends who have crossed over into some territory that I think must make this one look very poor indeed.

You can tell me there's nothing after this life. I don't believe it. I know there's more, because this segment is so nonsensical, it could only be a puzzle piece.

What do my friends know that I don't? What can they see that I can't? Don't get me wrong, I'm not itching to find out right this minute. But when the time comes, I think it's going to be like...skydiving. Hanging onto the plane, clutching grabbing shrieking and then.... OH WOW.

That's what Steve Jobs said as he crossed the threshold, according to his sister, novelist Mona Simpson. Three times: "Oh wow. Oh wow. Oh wow."

My years on the cancer quad haven't given me the power to understand death, but I have come this far: I bet it's the best party ever. For one thing, so many of my friends are there already. Daisy. Ben. Shannon. Allison. Sandy. Steve. Sam. Nancy. Savannah. Brit. They've moved on, but they continue to enrich my world just as surely as if we were having lunch tomorrow. They've taught me that you can be in two places at once--two times infinity, for all I know.

So: blessings to all of us this year. Wherever we are in the great continuum, there's more to come. The altitude is perfect, the moment is right. Open your eyes. Jump.

Saturday
Dec212013

Lady Lymphedema's Birthday Blog

(ED NOTE: Not my legs. Believe me.)

Hey my people,

Here we are at my birthday, December 22. This is a big one. Actually, as the astute blogger Lisa Bonchek Adams points out, they're all big ones once cancer has entered your life. But this is a flip-the-decade birthday, y'all. This is me getting to say I've somehow lived thirteen years since I was first diagnosed with ovarian cancer. I've had all that time to grow, change, rant, cry, love and learn.

I haven't wanted to complain on this blog, because considering how much life I've saved up, how rich I am in memories, complaining is just bad manners. But just this once, since it's my birthday, please indulge me. 

So I dropped a heavy box on my foot in September. It hurt like hell, but I figured that's what I get for cleaning out the storeroom when it's 95 degrees. Couple days later, I look down and holy crap, my foot and ankle are all swollen. Mrhuuhhh?  

X-rays, orthopedic boots, hot packs; nothing broken, says the podiatrist. Once we've eliminated hairline fractures, he looks at my chart, sees that December 22 birthday approaching, and goes, ah, wink wink, at this age we don't heal as fast as we used to. This was inarguable but also, it turns out, irrelevant.

I found out I had lymphedema only after I started an exercise program at my alma mater, Cedars-Sinai. Unlike the podiatrist, the cancer folks knew what to look for when they saw my by-now-mild swelling. Thanks to their sharp eyes, I'm lucky enough to have caught my problem early.

It still sucks. I'd gone 13 years without pelvic lymph nodes, no problem. Then some idiot, probably me, packed the storeroom and neglected to post avalanche warnings. All it took was one injury, and there's cancer, up in my face yet again, delivering another of those little insults that make it such a pal even after it's in remission.

Now my leg is swathed in bandages out to here, and will remain so for the next several weeks. Then I get fitted for my new style statement, a compression garment. Excuse me, what? Yeah. A compression garment. Like Spanx for your foot, for life. 

On the other hand, behold the power of words. Spanx for your foot. Doesn't sound bad when you write it, does it? Sounds like something you might buy at Macy's to complement your tankini. Maybe my compression garment will make me look svelte. Ten pounds lighter. No cankles here!

Or maybe lymphedema just sucks. Regardless, even if a compression garment is the last birthday present I'd want, it is my birthday. I made it to 60, and I'm celebrating.

 

Monday
Dec022013

Can you whip cancer in 130 minutes?

Today I finally asked the rude question about exercise and cancer. Like, WHY?
I hate exercise, so, keeping in mind that cancer is a gigantic imposition on my life, why should I have to exercise too?

My friend Dr. Asher at Cedars-Sinai patiently explained, and for what felt like the first time, I listened.

Statistics show that for many people, just 130 minutes of exercise per week can decrease the risk of recurrence by 30%.

Let me repeat that in case you just went into shock. Just 130 minutes of exercise, repeated every week, could give you a 30% better shot at thumbing your nose at cancer from now on.

130 minutes. It takes me that long to catch up on Grey's Anatomy. I can get through 130 minutes of anything. If this is even a little bit true, I might -- MIGHT -- be willing to change my ways.

Monday
Nov182013

Inspiration and estrogen

Hey my people,
I'm just resurfacing from Rise 2013, a four-day conference with the unbelievably dynamic motivator/ businesswoman/ guru Ellie Drake, along with guest speakers like Jamie Lee Curtis and Valerie Harper and Marianne Williamson -- and about 1200 increasingly enchanted women, including me.
Driving to the LAX Marriott for the closing day, I was so jazzed that I dictated my whole Well Again philosophy into my phone. I practically wept, it was so brilliant. Unfortunately, I discovered today, the phone didn't save it. It was like one of those dreams where you wake up just before the galactic emissary tells you how to achieve world peace.
Tough blow, I have to say. But this much remains clear to me.
In 2014, we'll have Well Again meetups in California. I'll be speaking as well as writing, and I'll be reaching out to contact all of you -- everyone who's living on beyond cancer and wondering when they'll find their posse of people who understand and -- hear this -- who would be friend material anyway, because that's how cool they are.
More fun, less fear. That's how we get Well Again.

Sunday
Nov102013

The Courage to Be Seen, Part 2

Hey my people,

Here's the second unbelievably cool cancer-fighting viral video I told you about:  "Molly's P.INK Tattoo," which came to me from upworthy.com. Click to meet Molly Ortwein, founder of P.INK.org, (P.INK as in "Personal Ink"). After her double mastectomy, Molly elected to adorn her reconstructed breasts with tattoos. Colby Butler, of Unfamous Tattoo in Miami, did the inking on two gorgeous representations of Brazilian pernambuco blossoms, reflecting Molly's love of all things Brazil.  

This story so far is lovely but not groundbreaking, right? Okay, here's the groundbreaking part. Molly has gone on to found P.INK.org -- a nexus that pairs women who want to answer cancer with tattoos with tattoo artists willing to offer their time and talent to help. I hope you'll check out the P.INK Pinterest page. Maybe recommend this idea to somebody you love. 

Brave women like Molly Ortwein and (previous post) Deborah Cohen are confirming what we all instinctively know: This is a momentous time in the wide world of cancer. The big C is losing its power to make us hide and talk in whispers. We're fighting cancer, and we're willing to be seen fighting cancer.

There's a fierceness cancer gives us, and although I bleeping hate the cancer, I love the fierceness. 

Molly is a perfect example. She may cry here and there during this video, but she's not remotely embarrassed about that. She's planning to work those tattoos, honey.  Talking about plans for her next trip to Brazil, she says with a grin: "I am so looking forward to marching my ass around the beach with no top on."

 

Thursday
Nov072013

The Courage to Be Seen, Part 1

Hey my people,

You know what? We are fighting back against the soul-killing after-effects of cancer, and we are being seen fighting back. I'm thinking about two viral videos I saw today. Both make me cry, not with sorrow, but with joy.

First came the most delightful, not to mention funky, homemade dance video, staged in the OR to Beyonce's "Get Me Bodied" by an awesome woman named Deborah Cohen and the medical team about to perform her double mastectomy. She termed it a Flash Mob and invited funky souls everywhere to join in. Here's how it went down.

 

Just five days after her surgery, Deborah's video has been viewed more than 6 million times on YouTube.  Nearly 200,000 people have visited her CaringBridge page, and many have responded to her request to film their own "Get Me Bodied" videos and email them to her. "I picture a healing montage," she writes. "Are you with me?"

You damn betcha!

 

Sunday
Nov032013

Happy Early Thanksgiving!

Hey my people,

Last night was hopping at our eccentric homestead in Silverlake, California, where we hosted our second annual Early Thanksgiving party celebrating life beyond cancer.

For the past couple of weeks I've been the leader of a small and increasingly hysterical group of people, united in the effort to make this house look like the kind of environment where you'd want to have a party. My partner and I are writers, meaning we are shy, retiring types, not much given to entertaining because that would involve housework. One Thanksgiving some years back, one of my relatives, seeing that I couldn't locate a single pot, pan, or dish towel in our kitchen, commented: "Do you actually live here?"

My limitations aside, however, this particular party had to happen. Because the first Early Thanksgiving was so wonderful.

The first week of November in 2009, when I was finally, finally done with radiation, chemo, and the works, my friends had the genius idea to throw me a Thanksgiving dinner without waiting for the old-hat normal Turkey Day.

Between the three kinds of pie and the relief to be alive, it was the best party ever. Looking around the table, face-to-face, surrounded by wonderful people, I knew that for me, healing is love. I wanted other cancer veterans to have the feeling I had then.

That's where my idea for Well Again was born. When you've been through the cancer mill, you can't just throw yourself back into life like nothing happened. Life needs to show you a little hospitality.

Believe me, Well Again is not just about sweetness and light. With my friends, the tartness brings the zing. My childhood hero Auntie Mame said, "Life is a banquet, and most poor sons of bitches are starving to death." If that's the criterion, my twisted buddies never miss a meal.

Last year at this time was supposed to be Early Thanksgiving. But on the day of the party, Rita and I got kind of phone call that stops parties in their tracks. Her sister's cancer had taken a turn for the worse. Now was the time to get to the hospital. We actually packed Early Thanksgiving turkey in the car, and it became the main dish for the vigil.

This year, though, our celebration of life was in full swing. There were mountains of food; there was even football. (UCLA versus somebody or other.) The house was full of friends, some of them cancer veterans like me, some just really good at loving people who've had cancer.

(That second group deserves thanks on its own: we've all met people who hear "cancer" and run the other way, but my posse shows up better than I do, because that's how lucky I am.)

To kick off the party last night, we had a traditional rite--yes, already we have a tradition!-- born at the first Early T/G. Everybody made hand turkeys and posted them on my Foamcore of Creativity wall in the living room. The kid-ness of it put everybody in the party zone.

So today was cleanup, and tomorrow I get back to the business of Well Again. Next year, we'll have more people for early Thanksgiving, because more of us will be on the Well Again voyage together. I think there will be many parties, not just one. I don't know the details -- yet. But I will.

Here's our invitation and our challenge, for this Early Thanksgiving and forever: Let's party till we're Well Again!

Sunday
Oct202013

Emily Jones: Mislabeled in the ER

You haven’t lived until you’ve spent the night in the Emergency Room of a sprawling urban hospital. And if you have the wrong name on your paper bracelet, it gets even more interesting.

My experience could be filed under the category of a “near death experience” except there was no tunnel with a white light and no heavenly beings escorting me along the way into the Great Hereafter.

I simply lay on an emergency room gurney and faced what I thought would be my last moments on this earth. My thoughts wandered from “I hope I’m wearing my good underwear” to “I forgot to turn off the coffee pot and my house is probably on fire.”

Just to back up a bit – I had been experiencing a mysterious pain for six days and suspected my glorious 10 months of remission from cancer had been canceled due to bad behavior. I had let my exercise program lapse and was back to the occasional sugar binge which begs cancer to come in and make itself at home.

I called my oncologist in Jackson and described my symptoms. He told me to drop what I was doing and get to the ER at St. Dominic’s before 5 p.m. I did as I was told. I filled out all the necessary paperwork under the name “Emily B. Jones” and the admissions clerk asked to see my driver’s license. No problem. Everything was cool.

I got hooked up to a machine and stashed behind a curtain while the medics handled a series of bizarre cases such as the guy with a concussion who said he was lead singer for the rock group, KISS. He belted out “I Want to Rock ‘n Roll All Night,” while a lady with a roach in her ear jumped around banging her head. That left plenty of time to do a little soul searching.

Fueled by a gargantuan cocktail of dilaudid and hydrocodon, my alter ego began to fly around the room and she was a meany. She began sticking me with a pitchfork for every evil thought or deed I ever performed in my 49 years on this earth. (Of course she banged me on my forehead for lying about my age.)

Through it all, the medical personnel would come in periodically and talk to someone named “Mary.” Why were they calling me “Mary”? Could I be in the psych ward? I glanced at my paper bracelet, and sure enough, it read “Mary Jones.” Oh my gosh! They were probably prepping me for an amputation or a lobotomy. I began shouting for a nurse, and discovered that my driver’s license read “Mary Jones.” Why have I never noticed that? True enough, Mary was the first name on my birth certificate but I haven’t used it since I was a teenager.

As the drug began to wear off I had more lucid insights into the years I wasted in my pursuit of material things as opposed to nurturing relationships. I sometimes thrived off conflict rather than fostering peace and love. For sure, I was living an inauthentic domestic life, trying to be Martha Stewart when I’m more of a Roseanne Roseannadanna.

I made a lot of promises to God and myself that if I got out of this somehow, I would live my life with more compassion for the plight of others. I would never let another moment slip by wasted and unnoticed, and I would stop complaining about every little thing that ruffled my feathers. I even toyed with a name change to accompany my new persona. After trying on the name “Mary” a few times, it just didn’t feel right.

Oh, and the tests revealed no cancer, only a few surgical adhesions causing the pain. Whew. Dodged that bullet and had an interesting Friday Night in the ER to add to my treasury of experiences.

My experience could be filed under the category of a “near death experience” except there was no tunnel with a white light and no heavenly beings escorting me along the way into the Great Hereafter.

I simply lay on an emergency room gurney and faced what I thought would be my last moments on this earth. My thoughts wandered from “I hope I’m wearing my good underwear” to “I forgot to turn off the coffee pot and my house is probably on fire.”

Just to back up a bit – I had been experiencing a mysterious pain for six days and suspected my glorious 10 months of remission from cancer had been canceled due to bad behavior. I had let my exercise program lapse and was back to the occasional sugar binge which begs cancer to come in and make itself at home.

I called my oncologist in Jackson and described my symptoms. He told me to drop what I was doing and get to the ER at St. Dominic’s before 5 p.m. I did as I was told. I filled out all the necessary paperwork under the name “Emily B. Jones” and the admissions clerk asked to see my driver’s license. No problem. Everything was cool.

I got hooked up to a machine and stashed behind a curtain while the medics handled a series of bizarre cases such as the guy with a concussion who said he was lead singer for the rock group, KISS. He belted out “I Want to Rock ‘n Roll All Night,” while a lady with a roach in her ear jumped around banging her head. That left plenty of time to do a little soul searching.

Fueled by a gargantuan cocktail of dilaudid and hydrocodon, my alter ego began to fly around the room and she was a meany. She began sticking me with a pitchfork for every evil thought or deed I ever performed in my 49 years on this earth. (Of course she banged me on my forehead for lying about my age.)

Through it all, the medical personnel would come in periodically and talk to someone named “Mary.” Why were they calling me “Mary”? Could I be in the psych ward? I glanced at my paper bracelet, and sure enough, it read “Mary Jones.” Oh my gosh! They were probably prepping me for an amputation or a lobotomy. I began shouting for a nurse, and discovered that my driver’s license read “Mary Jones.” Why have I never noticed that? True enough, Mary was the first name on my birth certificate but I haven’t used it since I was a teenager.

As the drug began to wear off I had more lucid insights into the years I wasted in my pursuit of material things as opposed to nurturing relationships. I sometimes thrived off conflict rather than fostering peace and love. For sure, I was living an inauthentic domestic life, trying to be Martha Stewart when I’m more of a Roseanne Roseannadanna.

I made a lot of promises to God and myself that if I got out of this somehow, I would live my life with more compassion for the plight of others. I would never let another moment slip by wasted and unnoticed, and I would stop complaining about every little thing that ruffled my feathers. I even toyed with a name change to accompany my new persona. After trying on the name “Mary” a few times, it just didn’t feel right.

Oh, and the tests revealed no cancer, only a few surgical adhesions causing the pain. Whew. Dodged that bullet and had an interesting Friday Night in the ER to add to my treasury of experiences.

Monday
Oct142013

At Home With Wegman's Weimaraners

Hey my people, you've met William Wegman's famously photogenic Weimaraner dogs, right?  The New York Times visited Wegman at his home in NYC's Chelsea neighborhood, where he cohabits with his human family and his muses, Bobbin, Candy, Flo, and Topper.  Here's the story:

http://www.nytimes.com/2013/10/13/realestate/wegmans-weimaraner-republic.html?smid=pl-share

And don't forget the slideshow:

http://www.nytimes.com/slideshow/2013/10/13/realestate/20131013-LOVE.html?smid=pl-share

ENJOY!