unweaving the nest

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

cozy

It's feeling like Christmas here in the nest. The craziness has started at work, but when I arrive home it is the best place in the world to be.

The tree is lit, the fireplace is warm, and...my boy surprised us all and came home from Colorado! My daughter said it perfectly "This is the best Christmas present ever!"


We are not going out much, just staying home together whenever I am home...which is not much. I've been cooking all their favourite dinners. My boy has gotten a little too skinny from working hard and living on an artist's budget. He said he's already gained four pounds. Even the kitties are cozy...well, the kitties are always cozy. Hope you are nestled in with all you love, too.

are they not the most fleetingly lovely little things?

 

(While bored here at work I did a Google image search for snowflakes and this was the one that caught my eye right away...funny enough it was on the website for a local ski resort about 20 minutes from my house. But of course.)

overwhelmed...

Know whose desk that is? It's the desk of the sexiest mind that ever lived. I'll let you guess who it is. And don't cheat by scrolling over the photo either. He once said that a clean desk is a sign of an uncluttered mind; I'm just not certain if that's a good or a bad thing.

My own desk is not only cluttered, but it's under a film of dust as thick as cornmeal. Tomorrow...tomorrow. Today was one of those days that had me overwhelmed from the moment my eyes opened...at 2 am...when my son called from Colorado saying his car had skid out in the snow and was in a ditch. He was alone, he was cold, and he had been trying to get a hold of someone to come help him for an hour by the time he called me. Everything worked out okay, but I tell you this long-distance mothering thing is hell sometimes. I fell back to sleep a little after 4, only to hear my alarm go off at 5:45. But I did get a small nap later. Yes I did.

It was one of those one thing after another days. Had some good news, had some bad news, had some INCREDIBLE news. Had some more bad news. And then I realized two checks have not cleared my account and I have about 17 dollars more than the checks were written for. Until the weekend. Rice and beans, baby. Ah well. It's a lot worse out there; I sure know that.

And then I feel stupid for even worrying as I finish my responsibilities for the day and light a fire and open a beer and take up my knitting. Good god what a cushy life I have.

Anyhow, the coolest news I received today was that my Alix sealed her book deal as the illustrator for a children's book. Advance and everything.  She stopped over right after her meeting with the publisher and I could hear her screaming when she exited her car---from where I stood inside my house. Then I started screaming and then I think we both ran to the bathroom because we were so excited we about p'd our bloomers. I got a sneak preview, and let me tell you...MAGICAL! I am so proud of her, and I am so thrilled to see this book become real!

I also have a little video to share with you of my son. It's just him and his bass guitar. Take a listen. Leave a comment for him if you like it. He amazes me everyday.

xo for now. More tomorrow.

where the light comes in

 

This morning was unusually dark. I felt it. It was rushed, for one thing, no time for a small fire or even to light a candle while we ate our breakfast. We did not plug in the Christmas tree, which is such a welcome bit of sparkle and brightness on those dark early mornings this time of year. It also dawned on me that soon I will be going to work when it's just getting light and going home long after dark. I work 12 hour days for seven days, but I do get Christmas Day off. I can't complain, because:

• I have a dependable job.
• Every one that works in my department works the same hours throughout the holidays...we are all in this together. No one is exempt.
• I get paid double time for the entire week.
• I have a job. I get a regular paycheck. And health care benefits. I'm fortunate. 

But still...it has strange effects on a person, that many hours for that many days, sitting in one place, indoors, with a headset attached to your head, listening to all kinds of voices from all over North America complain about things that really don't matter at all. Consumerism and commercialism is what ticks me off about the holidays. I've written about it before, and I won't get into again. I LOVE Christmas. It's my very favourite holiday besides my birthday...but I love it for the palpable magic in the air on that very day, not for the cultural phenomena it has become for weeks and months leading up to it.

What I want to write about is light. Whoever chose December 25 as the day to celebrate Christmas did not just pull it out of a hat. It comes right after the darkest night of the year, Winter Solstice, and no wonder we have come to include flame, wax candles, electric candles, evergreens and all things glittery and light-reflecting over the years. No wonder we try to bring our thoughts towards the brightness of well-wishing, merry-making, family togetherness and the unity of all humankind at this time of year. It's dark out there.

There is a poem by John Matthews that I like. I don't love it, because somehow it's not quite dark enough, not quite shimmery enough, not quite how it really tastes...(and of course I should not be judging as I have not written a better one...) but here it is:

Between Darkness and Light

It is within the darkness and the silence

That the magic of Christmas starts;

Somewhere between the glimmer of lights

And the first breathless moment

When children come

Stumbling like new-born angels

Into morning light.

Within the darkness and the silence

We sit, watching wonder

Evolve into form; where we

Enter the ringing silence

In which the first bells of Christmas

Sound the music of the soul;

Where the morning joy begins

With a single carol

To a half-forgotten tune.

It is here, between the darkness

And the light,

That we wait, uncertain,

Seeking the moment

That challenges us to believe

In a freshly minted miracle

Born every Christmas Day.

What caught me the first time I read this poem was this: the freshly minted miracle born every Christmas day. Being challenged to believe in something, uncertain as we are sometimes while waiting for that light. I'm in a much happier state of being than I was for many, many years of Christmases. Years. But I also remember that no matter how sad I could be inside, no matter how lonely in the deepest place in my heart, I sought that magic, that miracle, every Christmas Eve. Did I write about it on my last post? How I would stay up very late, all by myself and wait for it. Sometimes it would take me a couple dips in the whiskey-doused eggnog, but hey, it's the holidays. But I always found it. Always always. It's magic. And I dare you, no matter if Bah Humbug is tattoed across your forehead, I dare you to stay up late, all by yourself on Christmas Eve, and walk outside, hopefully to a bunch of snow---but it really doesn't matter---and look up into the sky and take deep, slow breaths of the air and close your eyes. I dare you to not feel it. I don't know what it is...but it's there. And it can fill you up just enough. Just enough.

And I wonder if it has something to do with all that darkness. You know how all those philosophers write stuff about "you can't know joy until you know sorrow" and "You never know light until you've known dark?" Maybe I'm just extra sensitive to things like this. Maybe I imagine it, maybe it's not really magic at all. But I tell you it's so real to me that it even has a special smell. I can smell it right now...the smell of those deep beaths outside, very late on Christmas Eve. And why is it important? Because it got me through the holidays when I was otherwise fairly pessimistic. It gave me a little jolt of wonder to soften the hard edges I was feeling overall. And even though I don't wear those hard edges anymore, I still look forward to that night. I still seek the freshly minted miracle that does not exist on other day of the year. Christmas miracles are special...and they may not even be something we can see, or touch, or hear, and certainly nothing that can be unwrapped (unless it's a puppy!). But close your eyes and go outside. Slow yourself down enough to take deep breaths of midnight air. Open yourself to the possibility of tiny miracles and joy even if your flame is down to an ember in the darkest corner of your heart. You'll feel it spark. You'll feel it between the darkness and the light.

The spring is often the time when we think of re-birth, but I believe it starts earlier. I believe it starts on the longest night, when the sun stands still if only for a brief instant. For some it might be that night in Bethlehem when their saviour was born. Joy to the World and all of that. Even I, doubting Thomas of the faith I was baptised in, place the tiny baby in the manger at midnight on Christmas Eve. It's a symbol to me, and I light a candle at Mary's feet---with the sometimes uncertain but deeply felt belief that there is wonder in the world. And goodness.  

It's the winter solstice afterall...the light will only grow stronger.

    

*Thank you, with all my heart and then some, to my beautiful friend, Misty for my new banner... perfect beyond perfect. xo

mind of winter

     

I love this photo. It was taken a few weeks ago as I was walking along a pond in mid-afternoon. Snow was falling like goosedown shaken from Mother Holle's pillows...remember Grimm's fairy tale? The water was black in the late daylight, the perfect canvas for reflections and the everchanging ripples of light. The colours of winter are breathtaking to me, and so many tiny portraits revealed themselves during my walk on that day. If you know me, you know how I love winter.

If you look on my reading list to the left there is a link to a collection of poems called A Mind of Winter. I bought it during one of my trips to New Hampshire last spring and have kept in on my bedside table ever since. While most people I know are spending winter dreaming of spring, I am the opposite---always dreaming of winter. I grew up in the desert southwest and the hot and humid climate of Texas, always, always dreaming of snow. How fortunate that I ended up in Western New York. So, this little book gives me great dreaming possibilities. Oh yes. The introduction was written by Donald Hall and is a lyrical homage to what he loves most about winter. I have read it probably a dozen times, because he just gets it. Or, I should say, he sees it like I see it. This small book is beautifully made, lovely to hold and read from, and is filled with poems about snow and winter from many famous and not so famous poets. There are wonderful illustrations as well: black and white etchings of cozy winter scenes, both indoors and out. It's one of those books that says "Shhh" when you pick it up to read.

 

See how black the water was?

 

And how the sky was that pale clear turquoise? Every colour, no matter how subtle, is intensified in winter's paler light and against the contrast of white.

Now maybe you just look at all of this and go *Brrrrr*. But that's one of those things Mr. Hall loves about winter:

Winter is energy. Summer ranges from comfort to an annoyance of mosquitoes and lethargy.

Winter is the glad warmth of the parlor against the ground of ice. Being snowbound has its comforts.

That's precisely it. When you enter a warm place after the energizing winter air has filled your lungs and reddened your cheeks and made your heart beat a little lighter and faster---it is instant coziness and comfort. There is a drastic difference between outdoors and indoors in winter and home becomes a nest, a cloak, a "bear-sleep of commodious shelter."

 

Last night I took a walk at around eleven or so. We don't have much snow on the ground yet, no need for snowshoes, so I pulled on my boots and headed out to the closest field at the farm next door. One of my favourite things about winter is how the full moon lights up a field covered in snow. I have gone snowshoeing or cross country skiing at midnight during the full moon and it's like being in daylight...except everything sparkles :) You could read a book out there if you wanted to! Anyhow, with the full moon lighting the sky it was such a beautiful night. Not enough snow for my liking, but enough to make the fields glow bright, turning "the landscape lunar, bumps and hollows unified by an uncanny light, which bounces from fields outside, upward to tin ceilings." (That Donald Hall makes my knees buckle)

   

It was a perfect walk last night. Now I will look forward to the big snows that will come (fingers crossed) so that it's so high up I can wear my snowshoes. I'll look towards the snow so fluffy that it's silent to walk in and there is not that crunch crunch after every step. Is there anything as silent as snow? Sometimes on a winter's night after inches and inches have fallen I will go outside and walk to the back of my yard and just watch. Watch and listen. It's like every sound has cotton around it. Like every twig has been dusted with sugar. "Descent is the music of snow" writes Donald Hall, "We sit on the porch, as long as we can, to witness this falling."

 

Out of the bosom of the Air,
     Out of the cloud-folds of her garments shaken,
Over the woodlands brown and bare,
     Over the harvest-fields forsaken,
        Silent, and soft, and slow
        Descends the snow.

Even as our cloudy fancies take
    Suddenly shape in some divine expression,
Even as the troubled heart doth make
    In the white countenance confession,
        The troubled sky reveals
        The grief it feels.

This is the poem of the air,
    Slowly in silent syllables recorded;
This is the secret of despair,
    Long in its cloudy bosom hoarded,
        Now whispered and revealed
        To wood and field.

Henry Wadsworth Longfellow

 

 

slow down

My boy's new video. Pretty exciting stuff.

And yes...UTN has had a refresh, and I hope to be writing here again soon.

xo