unweaving the nest

How to Subscribe to Unweaving the Nest Weekly...and Why :)

Not so long ago I received an email from a dear friend encouraging me to take some of the things I love and combine them into an online magazine. I looked at different options, different ways of publishing, researched the securest ways to offer subscriptions. I made long lists of things I would like to share, content that would be interesting, ways to make it interactive and even ways to have give-aways for my subscribers. After lots of planning and creating I have my magazine, Unweaving the Nest Weekly.

Here are just some of the things that we will be included in the image-rich issues:

• A feature story about something that I love that I think you might love, too.
• An inspirational essay, kind of like the things I've written about here on my blog since 2007.
• "The Last Straw" last-page essay from columnist Rick Ohler.
• Guest artists, poets, writers, photographers, chefs, and just plain old great people....
• Simple recipes that I have created. Fast, fresh and made with things you probably already have in your pantry and fridge.
• Candid interviews with interesting folks I'd like you to meet.
• Reviews of books I am reading that I believe are worth sharing.
• Poetry.
• Downloadable versions of my photographs that you can print or use as screensavers.
• Links to fabulous Web sites that I have discovered.
• Links to playlists I have created...music to discover and listen to, free, from your computer.
• and more!

It's kind of like a big love letter filled with things that inspire me, make me think, and that I want to share with YOU!

It takes time to put these things together, to create a beautiful presentation of them, to write and gather. Instead of putting ads on my blog, or filling the magazine with sponsor ads, I have decided to have a subscription rate and keep it to a minimal dollar amount. It's $4.00 per month, the cost of a fancy cup of coffee...and you get it once a week, for as long as you are a subscriber. It's easy to subscribe by clicking on this link and paying securely through Amazon.com. You will be billed automatically for $4.00 per month until you choose to unsubscribe. There is a link at the bottom of every magazine to easily unsubscribe.

If you would like to refer some subscribers to me, please send me an email at kateri.ewing at gmail.com. I have a special thank you gift for anyone who refers three friends that subscribe.

Unweaving the Nest Weekly celebrated its one-year anniversary, and is now onto the second volume of 52 issues. Here is a link to the one-year anniversary issue, where many readers sent in their comments about the first 52 weekly issues: CLICK HERE.

I sure hope you'll join us.

 

 

how to brew a cup of blue sky tea

Silver Jasmine Pearl Tea courtesy of my sweet friend Nancy. Blue sky courtesy of Western New York.

 

 

time to invent vigorous knitting

So d* has me logging into bicycling superstar icon Lance Armstrong's Livestrong Web site every day to chart my progress during our new adventure. I have to say it is an impressive virtual world of healthiness. d* and I are using the free services such as MyPlate, and the fitness tracker, which allow you to enter every bit of food and drink you put into your mouth and every bit of activity you engage in, and at the end of the day you get a detailed summary of exactly how you are doing nutritionally and also how many calories you have burned. 

Okay, so I'm doing it. Third day in and I've discovered quite a bit about how lousy my previously healthy eating habits (or so I thought!) really are. Let me give you an example.

So the past two days I have been extra careful and aware of every crumb that has passed through my lips, every drop of liquid, where as before I can attest to being mostly mindless about it ( I mean who thinks of beer as calories?) and just thinking I naturally make decent choices most of the time. Here is what my plate looked like yesterday:

Breakfast: a two egg white veggie omelette, small glass of OJ, and a cup of coffee with a teaspoon of half and half.

Lunch: an apple and a Kashi GoLean protein and fiber bar

Afternoon snacK: shared a salad of one roma tomato, fresh basil and 1 ounce of fresh mozzerella, half a cucumber and half an avocado and a drizzle of oilve oil and balsamic vinegar. And a half slice of whole rye bread with a trace of whipped butter on it.

Dinner: high protein pasta (1 cup) with a fresh tomato, three kalamata olives and a drizzle of olive oil, crushed red peppers, garlic and maybe a tablesppon of cheese. And another 1/2 slice of that whole rye bread.

Not a bad day, in my book. SO how did it look on Livestrong?

 

Cals: 1300

Fat: 64g

Cholesterol: 99mg

Sodium: 1274mg

Carbs: 134g

Sugars: 44g

Fiber: 17g

Protein: 43g

I was in the red alert zone for sugars, fat, fiber AND protein. Okay, so one less piece of bread and a few more veggies. Maybe an orange instead of orange juice. I get it.

I did 45 minutes of pilates, so I burned 291 calories, leaving me with a deficit in my calorie intake, which I have set at 1300. They recommend 1700 for my height and weight in order to lose two pounds a week, but I know better than that...so I've lowered it to 1300. Anyhow, I didn't feel hungry or deprived, and it's not TOO far off from what a normal day would be for me, or is it? I decided to make a "test" day of what an average day last week ( I won't bore you with the details) would have looked like. Here is what Livestrong came up with for that:

Cals:1684

Fat:78g

Cholesterol:483mg

Sodium:2331mg

Carbs:177g

Sugars:28g

Fiber:9g

Protein:63g

Holy sodium and fat intake, Batman! RED ALERT for every single thing...and that was a day where I was being mindful and didn't have a couple beers either. Good lord help me for those nights where I sample a few chicken wings or indulge in half of a fried bologna sandwich. I shudder to think of it. (Actually I've not shuddered to think of it, but shuddered with delight at the taste of it)

So it's obvious that I've got to be more aware of what I'm feeding myself. (At least 95% of the time. I'm no sadist.)

But the real kicker came when I was exploring activities that burn calories. So 45 minutes of pilates is 291 calories burned, and a half an hour of running is 482. If I take a good hard walk for an hour that's 565 calories off the plate. But Livestrong has lots of things to choose from, thousands, that count as physical activity that are much more fun and interesting than pilates and running. For instance, the Web site clocks knitting in at 146 calories an hour. Knitting! I can do that! And grocery shopping is 347 calories an hour. Now, I wouldn't call it fun or interesting, but if you must do it, you might as well burn that extra piece of bread off, and heck, it's almost as much as taking a brisk walk! And cooking...205 calories an hour. 

If I actually had more sleep in my life I could burn 49 calories doing that, so really I should be ahead of most folks who get their 8 hours in because I'm burning up more by just being awake.

If I stand when I write I can burn 223 of those little buggers, and if I stand while I eat? 194! (Doesn't it seem like eating would burn more calories than writing? Must be all that brain activity.) Driving is 194 calories an hour, so by the time I got to New Hampshire I would be able to enjoy a 1746 calorie meal? This is sounding really, really doable!

But the most pleasant news was this...vigorous sex burns 146 calories per blissful hour. Exactly the same as knitting. I know, that's hard to believe. I've never broken a sweat knitting before, have you? There must be some mistake. But I mean, it's Livestrong.com. They know what they're talking about, right? 

Well, at least I know that if I knit for an hour after vigorous sex I don't have to feel guilty about not running that day. Or, I can look at it this way...if I knit for an hour after vigorous sex AND a half hour run...I can have a small cup of espresso bean ice cream. Now that's a lifestyle I can live with. Thanks *d!

 

 

 

a deal with the d*

No, this is not an essay dealing with some shade of Faustian angst. The d* I am referring to is far from the devil. She's my good friend Dori (that's her on the left, and me on the right) and yes we've recently made a deal. When I approached her about making a commitment to meet three times a week, come hell or hummus wraps, to walk our way into running a 5K, this was her response:

"I'm old and my knees hurt and my ass bounces like 2 pigs doin' it in a gunny sack. But for you, I'll try."

A true friend, indeed.

But see, here's the deal. We've both been complaining about our pants fitting tighter and our middles getter softer and softer and our arms looking more like ham hocks than human appendages, and there comes a time when you just have to put the words aside and do something about it. It's a fact of life, or at least our particular lives: our once upon a time smokin' hot hourglass bods have turned into riper (and of course wiser) versions of apples and pears. (Okay, very ripe. If you apply even slight pressure your finger will certainly leave an impression.)

I like to think of us as two beautiful women. And we are. Not the ultra-homogenized and well-preserved Victoria's Secret Angel types (and in our defense we are at least two decades ahead of those chicks), but the real, cream on top of the milk type...sublime when we were fresh, but maybe a little curdled as we’ve aged. And as a friend of the opposite gender once said to me, "There's beauty, and then there's beauty." Beauty is the thing that comes only with age and experience and a willingness to be vulnerable and allow life to fill as well as break your heart, and to leave its many markings, the most important of which is an empathetic heart and kindness. We've got Beauty. And we've both earned it.

We have no illusions of transforming into Angels or athletes; our skills are more at home on the dance floor than on the courts, and we've both had our day as bikini clad young things and those days are well behind us. But we can aspire to lose 20 pounds so our size twelves feel a little looser around the muffin top. And of course that means we'll have to forgo the baked form of muffin tops (or Dori's famous scones) for a while, too.

Oh we've had plenty of excuses to not get out there and get the job done. For me, at least in the past six months, my biggest excuse is no sleep and therefore zero energy. We both have the stress of life as single moms, some health set-backs, and a serious lack of financial availability to primp, polish and pamper, much less afford a gym membership or even a new pair of running shoes...but the best things in life really are free. Grab a friend you enjoy being with and that you know will hold you accountable, get your calendars out and find three days a week to meet at the park and work your asses off, literally. Free. We're not putting in enough miles to need fancy shoes, and we wouldn't be caught dead in running shorts (yet) anyhow. So when you see two middle-aged broads with a little be-donk-a-donk going on under their cargo capri pants and t-shirts, you'll know it's us.

So there it is; we've made a pact. Three times a week we are following the "Couch to 5K" training schedule to culminate in a grand affair: a 5K race to run together. And hopefully fitter physiques to add health to our already luminously beautiful selves. A sleeker and stronger apple and pear.

stuff to do when you can't snowshoe

This is one of my favourite trees at the farm next door. I went for a snowshoe there the other day, if you can call it that. Really, boots alone would have been fine all across the fields and even in the woods. We just don't have enough snow for my taste yet. I love me a harsh winter. While many folks dream of living someplace warm or at least temperate, I'm pretty much set on being somewhere that gets piles of the fluffy white stuff. Never mind inches...I'm talking feet.

Western New York has that reputation, but in the past few years it's been a little disappointing for polar bears like me. Today it snowed, though it certainly could have been more generous. I went to the city this morning for a doctor's appointment and decided to meander the snowy avenues for a while before I came home. Nothing like our gal Buffalo all adorned in white. :) I stopped in a little Middle Eastern joint to eat falafel, then walked to Main Street and paid a visit to my friends at our incredible local art supply store. Pardon the cliché, but every time I go there I'm like a kid in a candy store. There is one guy who has worked there forever who loves to talk about colour as much as I do, and so we stand in front of the Holbein watercolours and drool over swatches of alizarin crimson, indathrone blue, aureolin, rose carmethine and then some. Just saying the names out loud is delicious. I found a new love today, quinacridone red orange. He opened the tube, took a drop of it on his finger and spread it on the heel of his palm. 

"It's the closest colour to blood you'll find."

Well, he was right. It was gorgeous. Made my mouth water. Not for blood, but maybe for a blood orange. I was just saying to a friend the other day what a beautiful colour blood is. Rightfully so...it's the essence of what keeps us alive and ticking. My art store friend also explained the difference between modern and traditional pigments and why you can't find the colour sepia in oil or acrylic paints, only watercolour. I won't bore you...but it was fascinating to me. The folks at the art store are geeks about colour and texture just like some folks are geeks about math. I guess I'm one, too. Fine by me.

But what this brings me to is that I've decided I want to learn how to draw. I've done it my whole life, but I'm really not very good at it. I especially want to know how to draw the human face, and eventually how to paint it. Sure, I've tried, but my efforts always feel flat or have that deer in the headlights look. So how happy was I when I saw this on my friend Misty's online journal? Pretty damn happy. Class starts in just over a week and I'll have plenty of time during my long nights at work to give it the old college try. Maybe I'll even share some of my efforts here. It's an online class that utilizes blog technology and streaming video, and I tell you it's a great way to learn. You can really take your time, stop, rewind and attempt the lessons as many times as you need to (a bonus for, a-hem, slower folks like me). Misty is a sought after teacher and travels the world to share her talents, but it's never been convenient for me to attend one of her workshops...this way I can do it in my jammies if I need to!

There are some other online classes that you might want to know about. My friend Rick Ohler has a fantastic array of online options for those of you out-of-towners who can't attend his Tuesday and Thursday classes here in East Aurora.

An Online Visit With Your Grammar is his newest addition. Here is the course description:

Learn to correct the most common mistakes in English; and have some fun at the same time. Why lay around this winter whilst Lake Affect snows ravish your drive way why not put that time to good, use. In "An Online Visit With Your Grammar", you'll receive each Wednesday, an email with a Word attachment from moi. The attachment will contain a story which is full of mistakes, there will be errors in Punctation, Grammar, Spelling and Useage. You'll make corrections during the week. Everyone can work at their own pace. On the following Wednesday I send along the corrected version with explanations. Its good fun and cheap $twenty-two dollars. By the way there are no less than 20 errors in this course description. Maybe there's more. 

Another class that he offers is Online Creative Writing:

In this course writers will write from the comfort of their own homes, in their PJs if they like. They can work on weekly assignments provided by instructor Rick Ohler, OR, they can continue their own writing projects already under way. Using email and telephone, writer and instructor will set an eight-week goal and have weekly communication. Beginning and experienced writers of family histories, memoirs, fiction, essays and non-fiction are welcome. 

For more information on either of these classes just email Rick. He'll be more than happy to let you know how to get started.

I also have an online course starting this winter. Here is the course description from the East Aurora Continuing Education Web site:

Whether you're already filling notebooks with poetry or just have a longing to try, this 8-week workshop with Kateri Ewing will offer guidance and gentle criticism on how to craft your words into poems. We will meet in a virtual classroom filled with inspiration and instruction on the basics of craft. There will be introductions to schools of poetry, to poets both well-know and obscure, as well as a place to exchange ideas and post your own work for group discussion. During our final week we will meet face-to-face for a group reading and celebration at the Roycroft Inn. Students will leave with a greater understanding of poetry and some of the subtleties of craft, all from the comfort of their own home and with the convenience of their own schedule. Kateri will check the Web site daily for discussion, and provide weekly lessons and assignments. Please email Kateri for more information.

Of course if you are participating from far away and can't join us for the final celebration, there will be something special at the end for you, too :) 

Hope you are enjoying the winter no matter where you're sitting, and that you've made learning something new a priority for this brand spanking new year! And don't hesitate to wish for snow up here in Buffalo. The plow guys need it, the ski resorts need it, and my snowshoes need it, too :)

No Place Like Home

 

As published in the East Aurora Advertiser, June 2009

No matter how much I’m in love with East Aurora, every now and again I feel the urge to hit the road and wake up somewhere new. On Memorial Day weekend I drove myself to my other favorite place to be in the world: the Monadnock region of southern New Hampshire.

I admit I felt smug leaving behind our fair village in its current dust-bowl disarray. The place I visit in New Hampshire is as rural and green as anyplace else I’ve been. There’s a lack of commercial growth in those embracing, granite strewn hills that I find as quenching as fresh lemonade. Not a road-crew, nor even a billboard to be found along the serpentining roads. Each time I go there I make the 33 mile drive to a picturesque village where a friend lives, and it takes me about an hour to arrive; there’s just no express way to get anywhere. Everything about the place beckons me to slow down and savour. It’s just a very special place.

Long walks through fern-laced woods and granite boulders that make me want to stop and sit for a while, listen to the birds and the leaves rustling with the breeze, are one way I spend my solitude there. Once I encountered an elusive woodcock on a dirt road that leads to Thorndike Pond. With his tiny hunched body and his long nose pointing down to the ground, he looked like a little old man moseying along with his cane. It’s like that there for me; I experience things that are nothing short of magic. I take aimless drives through the countryside and find myself holding my breath when I turn a corner to espy a glinting blue lake, or catch a different view of the granite topped silhouette of Mount Monadnock.

I’ve made many local friends from my yearly visits there. People seem to keep their jobs: the young woman with jade-colored eyes and an ever-growing tattoo collection that works at the coffee shop in Marlborough, or the woman from New Jersey who came to run the historic inn because she loved it there so much she wanted to call it home. Every time I pack my car to leave, I get teary-eyed as I say goodbye to the grand mountain in my rearview mirror, the people I’ve come to know there, the landscape that feels like a warm embrace. It feels like leaving home.

As I drove into East Aurora on that Tuesday evening, I was saddened by the sights of our torn up Main Street. I felt like turning right around and heading back to Wyoming County to stay one more night in someplace quiet and green. Then something caught my eye; a friend I have not seen in weeks was walking her dog down Main amidst the rubble. And look! There was that couple I have seen taking their own evening walk down Main for years now. Many familiars were out and about enjoying the night despite the effort it takes to avoid the trenches and gravel dust. It struck me, what I love most about where I live; sure it’s as beautiful a spot as any on earth, but it’s the people, the ones I call my friends as well the faces I know from being here for over two decades, that make it home sweet home.

unexpected gifts

Hello out there...it's been a while. Since I posted last I've had my final trip to the doctor until my next surgery in July, I have gone back to work, and I have finished and sent out three poems into the big wide world. And there have been other things occupying my days and nights..but that is not what I am here to write about today. 

 

The photo above was taken a week or so ago on a lazy morning by the pond at the farm next door. It's a special spot for me, kind of unruly, and that tree is like a touchstone for days when nothing seems quite touchable. Some days I see it as a praying tree, on its knees. Other days it's as thirsty as I am and I see it bow to drink its fill. And some days it's as broken as can be, prostrate and weeping, too heavy with despair to get back on its feet. On those days I talk to it about my own despair, and I can sometimes see in the mirror of pond a kind spirit reaching its many hands up to keep the tree's tired limbs above water. If I'm lucky, before I leave for home I realize that if nothing else the ground beneath me will support me...but really what I know is that the people in my life that I love and that love me are the real support.

 

 

This morning I had an unexpected visit from one of those people and it was a beautiful beginning to my day. And when she left I had another unexpected gift, an email from a reader far away thanking me for the words I write here and sharing some of her own very personal rays of light that get her through the darkness. What a validating thing it is to receive the grace of another spirit. Nourishing and generous with hope and kindness. 

 

One of the things she said in her email reminded me of one of the lessons I have learned from having cancer. The lightning strike. I have had other lightning strikes in my life; the most profound of them was when my first son was born so sick and died three days later. Things can storm into your life with hardly a notice at all. Sometimes they are good things, but often they are not. It's the things that are not so good that are worth the most, it seems. The things that hold us up for measure...that shock us into realizing that we are only very human after all. And being human means being fallible, fragile, and a living breathing miracle as extinguishable as the ant that finds itself under your careless shoe. 

 

 

Being alive on this earth is a miracle and a gift. A daily gift. And once the lightning has struck, even if it takes several strikes, it tends to make one realize the vulnerability and preciousness of what it really means to be alive. What I am trying to say is that most of the time I have a deeper appreciation for my singular life and how it is no less or no more important that the life of any other plant, animal or mineral on this earth. It allows me to every now and again really understand that there is no such thing as "why me?" Good and bad will fall on every living thing, and at any given time. The ant toils to build its hill only to have it stepped on or even kicked to dust by a curious child...and then it gets right back to work, building it again. Being alive means work. Being human means we are at a disadvantage next to all other living things...because being human means we have the ability of discernment, and sometimes that means we choose to give up. An ant would never choose to give up. The grass in the field will die every year and will never have the choice of whether it desires to spend all that energy and time to grow tall again. The garden spider will weave again and again, despite a heavy rain or the careless shears of the gardener which cuts the stalks that spider had built upon. 

 

 

Shit happens. Nothing is perfect. If you are lucky enough to be alive in this world you will sooner or later take a fall. And who knows why some will fall harder and more often than others. It is those people, the ones who keep on getting up, that fill my heart with awe and respect. They are the salt of the earth that bring me thirst enough to find water in the driest desert. They make anything seem possible. 

 

I have always believed in silver linings, but not as much as I have learned to believe in the beauty of sheer determination to get up and carry on. Not nearly as much as I believe in the grace of having those special people in our lives, those we know intimately and even those we have never seen face to face, that help us to see it through.

 

(Thank you, Siobhan, for your email this morning. It meant a great deal to me.)

it's a good day to be an American

Last weekend a few of my steadfast friends, my north stars, gathered at my home for a midnight walk in the snow. We lit white candles and made wishes: for health, love, light, peace & prosperity. It was a magical night to be sure. Here are their shining faces captured in the dark by my nifty infrared camera:

But today I am posting these photos for another kind of wish. It is the Inauguration Day of our 44th president, Barack Obama, the first African-American man to be elected as the leader of our country. I don't think that in itself is the greatest thing about this day, but it can't be overlooked; it is certainly a very important milestone for many people. All of us, really. But what I think is the greatest thing about this day is that we have elected an intelligent, realistic, hopeful and sincere human being to take on the tremendous job of steering this magnificent, yet sinking, ship we call home. What strikes me most about Barack Obama is not his charismatic exuberance, nor his visionary expectations of all that could be. It is his somber acknowledgment and understanding of the state of this country, and of the world, and that he seems to really know what an immensely difficult and almost impossible task it will be to make things better. When I watch this man speak, when I see the expression behind his eyes, I know that he is a man who really "gets it."

I am hopeful for his vision and all that could happen, politically, culturally, financially, under his leadership, but I am not expecting miracles. I am hopeful that we will not expect superhuman efforts, or make him into some kind of saviour. He's not. But I believe he is a man who will show reserve where he needs to and go full throttle when it's warranted. I believe he will respectfully engage, deliberate and work together with foreign cultures, with a broader understanding than those countries are used to when dealing with the United States. I also don't doubt for a minute that he will hold strong to the values and vision of our country, in a very dignified way, either. I cannot even begin to imagine the immensity of all that will land on his desk, and even more so on his shoulders, but somehow I have faith that he will keep his head up, and inspire us to keep ours up as well, while always moving forward, no matter how slowly.

I read this morning that only three presidents have requested a poet to read at their inaugurations. According to Garrison Keillor's Writer's Almanac: Maya Angelou read at Bill Clinton's first inauguration, Miller Williams at his second. In 1961, Robert Frost appeared at John F. Kennedy's inauguration. About a month ago, Barack Obama announced his inaugural poet: Elizabeth Alexander, a professor at Yale. Obama knows Alexander from the days when they both taught at the University of Chicago. And Alexander has been working on her inaugural poem ever since. I will be looking forward to hearing that poem. And it may not seem particularly important to most people in the grand scheme of things, but it thrills me to have a president who loves literature, who reads books and talks about them, and who even writes them himself.

Today, indeed, is a good day to be an American. This American is hopeful, not for instant miracles but for a slow and steady change. For the inspiration that is flooding through all sorts of young people today about what is possible if we set our hearts and minds to it, so that they can grow up to be the kind of human beings and leaders we need. Today I send my wishes to the Obama family for all the strength and integrity they need as they become our first family. It is a good day, indeed.

hole in one

This is my dad, Don, and my brother, Michael, on our family trip to Ireland several years ago. It is one of my favourite photos that I have taken of the two of them. It was also my favourite trip, ever, where I was not off on my own. Anyhow, this photo has nothing to do with this post, but I love it, so I'm gonna use it.

My dad recently traveled to California where he played golf in an invitational tournament at Pebble Beach. My dad LOVES golf.  He plays almost every day now that he is retired, sometimes in not so ideal weather and pretty much all year 'round. It's his passion. I love to hear him talk about it, just like I love to hear anyone talk about something they are passionate about, whether I know anything about the subject, or not. I actually do know quite a bit about golf, being his daughter and all, and I can't say I share the passion, but I certainly share his enthusiasm.

When my dad returned home from his trip he called to tell us some pretty amazing news. He shot his first hole-in-one EVER (and he is a fantastic golfer) at Pebble Beach. And not just at Pebble Beach, but on hole number seven at Pebble Beach. That is one of the most famous holes in golf, folks. And not just on one of the most famous holes in golf, but with a wedge. Yep. Pretty damn superfantasticnifty-o-boy, hey?

 

 

Thumbs up, dad, from a very proud daughter!

And here are a few shots from the infamous moment...and if you get Golf Weekly magazine by any chance, look for him!

joy (& light in all its disguises)

 

This sweet little painting was given to me last night by my dear friend Alix. She had shown it to me in a photograph of where it was hanging in an art show at the Neighborhood Collective in Buffalo. I fell in love with it, its name is Grace, and last night she surprised me with it...along with a much needed hug (more than one) and her inimitable grace...which any woman would be lucky to be witness to. She also brought another surprise yesterday...a new puppy. A sweet little girl that will be a wonderful, magical surprise for her three children on Christmas morning. We get to babysit until then! Just look at her!

 

We are calling her Zuzu (after the little girl in "It's a Wonderful Life") until she gets her real name from her new family. She snuggled with us all night---perfect little bundle of joy. Oh that puppy dog smell!

 

 

That is Alix holding her while visiting last night. :) My daughter is smitten with little Zuzu...and I need to keep telling myself "You don't need a puppy! You don't need a puppy!"

Not yet, anyhow.

I have been given another gift of sorts. And even yesterday morning I would have been hard pressed to call it a gift. Even after receiving this quote in a daily email I receive about Gratefulness:

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way.

After a couple of months of doctor's visits and speculating and worrying and feeling generally great but at the same time like a mess of tangled yarn...I got some definite news yesterday.

But first is the obligatory disclaimer: I was not certain if I wanted to write about this or not, but suddenly it was clear to me that I needed to. For many layers of reasons, but most importantly because of the nature of the beast. Knowledge is power and knowledge is also sometimes evasive and hard to come by. And if one woman reads this and is helped by it, well, I don't wish this on anyone, but the fact is that it happens to many women at every hour of every day. This is not a plea for sympathy, or anything of the sort. This is me, the writer, telling a story of how important it is to pay attention. So...

I have cancer.

Scary fucking words.

But real ones that many many people---women, men, children, people of all ages---will have to say one day. And the scariest part to me is that I almost didn't know about it. Even after going to the doctor several times with the same complaint.

Now, granted, the cancer I have is a rare form of breast cancer. It's called Paget's disease of the breast. less than three percent of all breast cancers can claim the name. See, I'm special already! So I can't blame my doctors for not knowing that is what was going on? Or can I? Well, if you get right down to it, it is a physicians job to know these things...but I'm not going to blame anyone. I believe we have to be our own advocate when it comes to many things in life, and when it comes to our own health care for certain.I didn't know what was causing my symptoms of my right nipple getting red and itchy except that it was annoying. It would come and go and certainly didn't seem dangerous. I have really sensitive skin anyways, and my skin does get dry...I ignored it for several months. When I went to the doctor the first couple of times he told me to use cortisone cream if it bothered me, but it wasn't anything to worry about. It would get better. But it didn't.

And I got a weird feeling in my gut. Like I knew something was just not right.

So I went back and showed him again and he said he really didn't think it was anything to worry about, "But you are due for a mammogram. Go have one." So I did.

Mammogram doctor: "Everything looks great. See you next year"

Me: "Really? Because I just have this feeling. I mean are you sure?"

MD: "Everything looks great! See you next year."

But everything didn't feel okay to me. And guess what? The next morning the doctor called me.

MD: "Mrs. van Huystee?"

"yes?"

"I've changed my mind about your mammogram. I'd like to get some more pictures. Can you come in later today?"

And so I went back the next day, had 5 more detailed pictures taken, an ultrasound, and then...a biopsy.

One week later I had the news that the cells they noticed in one of my milk ducts were stage zero cancer. Completely contained. The best kind of cancer to have. Very well-behaved. You should be in an out of a simple surgery within a morning's time. Piece of cake, toots.

On the advice of a friend I decided to get another opinion at Roswell Park Cancer Institute, which is luckily located not too far away. My first appointment was spent filling out forms, becoming a registered patient there with my very own ID card, and then being told that the doctor could not see me because instead of sending my slides over for another pathology report, the lab sent someone else's bladder tissue. Okay, fine. Human error. I would have to come back in a week.

So I did. I was there 5 hours last Wednesday. Tests and exams and lots of questions and vitals. And then my new Doctor had her first look at me and said "Classic Paget's Disease. We'll need a new biopsy to confirm, but I am 90% sure."

What? What the hell does that mean? Still an in and out by the end of morning ordeal? I'm not going to lose my breast am I? How long have I had this? HOW THE HELL DID I GET THIS? I've never heard of this! And hey! Am I going to die?

My doctor explained that it is a rare form of breast cancer that affects the nipple and underlying tissue. They don't know what causes it except that it is almost 95% of the time connected to an underlying cancer in the ductal system. She has not seen much of it, and the nurse practitioner had never seen it before. I couldn't see it at all! I had an itchy nipple for god's sake. How the hell did she know this just by looking at me? And if she was so certain, why didn't anyone tell me this in the previous series of doctor's visits?

So they did another biopsy. This time the little stitches were on my nipple...and let me tell ya folks...that smarts. They did take the time to make sure there would be no trace of a scar. Very thoughtful...but even I know that if there is cancer on my nipple it ain't going to be making a damn bit of difference if there is a scar.

So yesterday the biopsy results were in. My doctor called me and said it was positive for Paget's Disease, and also that my particularly lovely, rare and exotic cancer cells are ER Receptive. That means they feed on estrogen, those hungry little buggers. This can be a good thing, because the cells respond very well to estrogen reducing medications such as Tamoxifin. But Tamoxifin also has some hellacious side effects, especially for people like me with blood clotting issues. There are other options of course...like the removal of your ovaries, cool shit like that. But I am jumping ahead.

What the doctor then told me was that now they needed to see exactly where the cancer has gone between my nipple and those milk ducts. Apparently this type of cancer does not show up on a mammogram or an ultrasound. PAY ATTENTION to your body, ladies. If you feel something is just not kosher...don't let it go.

My MRI is scheduled for January 2nd. This will give us layer by layer images of my body. This will tell us just where the hungry little cells are hanging out. And where we need to make our next move. Notice I said "Our" next move? That's because as far as I am concerned I am now a doctor of myself, and will be working alongside my new prestigious colleagues very, very, very closely. We are going to be great friends. I can just tell.

SO I don't know everything yet. I do know I will more than likely lose my right breast. I definitely want a new one. I mean heck, maybe I'll even consider a matching pair. I have no idea yet. And if I'm honest that freaks me out, makes me cry sometimes, but I also know it's not the end of the world in any such way. Maybe they'll be even better than before! But I kind of like (love) my breasts. They nursed my babies, and well...I won't get into the rest of their resume. But people lose a lot more than that sometimes. Like their life.

So why am I telling you this? I want you to know how important it is to be your own advocate. To know your body. To not wait when something feels a little off. To not take a doctor's word as the last word. You gotta be responsible for your own self. Nuff said.

I also want women to know about Paget's Disease of the Breast (not to be confused with Paget's Disease of the bone...completely different.) The link will take you to the Mayo Clinic Web site and it provides the most accurate information I have found on the Web. Please pass this information to other women you know and love. It's basically an unknown disease.

One other thing...I'm looking for allies. If you have had breast cancer and wouldn't mind sharing your story with me, please email me. If you know anyone who has been diagnosed with Paget's, please pass my email address along? There is very little information out there. Knowledge is power and I am not afraid to ask for it.

So, at the end of the day, this day at least, I'm feeling pretty revved up for an adventure. I have my moments...lots of feelings to sort through, lots of ways something like this can affect your life. I can wallow in self-pity with the best of them. But today I'm feeling like I've been given a gift. I don't know what's inside of the box yet, and it may take me a long time to unwrap, but there is a reason for everything and I can honour that. My friend Alix said to me last night that I will come out of this even stronger than I already am. Stronger, wiser, more compassionate, and I bet even happier with a greater capacity for joy than ever before. Time to turn the light on BRIGHT. I have written about grace before, many times actually...I believe in it. And sometimes it does come to us in disguise...like a strange dark angel that comes in the night to toss the heavy furniture about the room. There is a reason for everything.

A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way.

Feeling kind of like a superhero.  :)

XO