Ella: The Skald, The Poem 

** I feel like this needs some editing, so anyone feel free, but be kind of nice...

The background:

While still in undergraduate school I once described the Vikings as "precious."

It was a very Monica, "oh Professor Darien, those Vikings were just pillaging and plundering their little hearts out! Just precious!" I was met with one of her famous, among Hartwick English Lit students, headshakes coupled with a long sip of diet coke. I feel compelled to tell you that I do understand the Vikings were a rather rough tribal culture and in the future will try to reserve that particular adjective to things like babies, puppies, and puppies dressed up like babies, etc. Actually though, the widely popular views of the Vikings as violent, brutish red-heads are disputed in the scholarly community. It is said that those big old Germanic savages really acquired that rep beginning in the eighteenth century during the Viking Revival...

This is not an essay on Vikings. I do have a point. The point being, I woke u p thinking of the Viking skalds, a Nordic poet, and the told tale. So now I am writing it down!! I would love to learn more about the skalds, and I fancy the romantic image in my head of myself, sitting on a large rock on Scottish icy shores, wrapped in furs, maybe even chewing on a meat leg (they did that, right?) A group of children gathered a my knee, waiting for their story.

This image redefines itself in my modern life. Most often, I am my daughter's skald. And she mine. Our modern poems are made up of "Mama, tell me stories of when I was a baby!" Her blonde head resting on my shoulder as I launch into whatever funny memory of the many trials of Miss Ella Mary Pawkett. 

I have always known my daughter was made up of poetry. Every second she walks the earth is one more thread, one more line, in the vibrantly colored tapestry that is her poem. Her poem dances and sings. Some of the thread shimmers from her star and the moon. Some of the thread is damp from tears.  Threads are dyed blue,green and grey from trips to the ocean. Gold and red threads colored by every Christmas ornament she has hung on her trees. Pink threads from party dresses. And,the multicolored threads are our stories.

I knew Ella was a poem the second I laid eyes on her. Maybe it was her star that clued me in. When she was a tiny baby, the poems sparkled in the air outside her laugh. When she learned to walk, every bumped behind frustration became another line. Only I could hear my fellow skald of course, although I often suspect my mother, as she shares our powers, may heave heard too. 

The first time she actually spoke a poem, her first story, was much later. She was around age four or five, and after bedtime tales of Belle and Ariel, she looked up from her snuggly bed, and I saw the story, there behind her big blue eyes! I have never asked her if she got the warm feeling that I always got when one comes to me. I should ask her and will.

"Mama, what's a nightmare?" Well Woog, a nightmare is when a black hooded figure creeps out of a box and puts unhappy or scary thoughts inside our dreams. Usually, our dreams are protected by the day mares, beautiful sparkling gold creatures that carry shields painted with pieces of our good dreams. Everybody knows that...

"Well mama, I had a nightmare last night, do you wanna know it?" 

"Absolutely Woogen! Do tell!"

                                       Woogies First Told Tale

She had had a dream that voices were yelling at her, and she thought that something scary would steal her in the night. When she came looking for us, we weren't in our room. She was all alone. "Mama, that was the really scary part." she proceeded downstairs to the kitchen. She climbed up on a chair and helped herself to some Oreo cookies. As she munched, she wandered out onto the front porch. "Oooh Mama, remember the window I fell out of when I was three?!" " But of course, how could I forget my love?" 

Well, she climbed out that window and proceeded to walk down the driveway. She was headed 'round the corner to her BFF Gabrielle's when she was met by a large, shaggy dog. The dog told her to go back inside. She was afraid of the dog, so she did just what he said! Then she stepped on a turtle. Then she woke up. 

"Excellent story Woogie! Did all that really happen in one dream slash nightmare?"

"Oh yes it did Mama, it was a looonnng dream!"

But I saw the story, the poem, dance behind her smile as she drifted off. 

Versions of that first story have been amended over the years. One even came up just the other day, while we were on the cape. Still, even in the heart of these preteen years I still get those requests for stories of when she was little. And her eleven year old blonde head still snuggles up to me. This time, she told the story and this time, she was awake. Apparently she found Daddy sleeping on the couch and she was mad. So, she decided to walk to Gabbys. But, by the time she reached the end of the driveway, she was tired and turned back. I asked her if she saw the dog, and her somewhat withering reply was "no, not in years." 

But, that night, as I kissed her before bed and reminded her to turn off the damn iPad, I saw the story dance again. 

I bequeath to my beautiful baby all of my stories. I want her to tell stories to her children. Ella is a poem. I only wrote part of her,but I am in there all over the place. My threads change colors. They are the thickest and the strongest. The protective threads. My daughter is a poem, and each day grows a new verse. My daughter has skald blood in her veins. She will pass our stories through generations. And when I leave this earth, I will watch her from my star and send her inspiration. My baby the poem, my baby the skald...

Project Perspective

Project Perspective In reading other women's accounts of their battles with breast cancer, you often see the words, "appreciation" or " perspective."  Seems like kind of a no brainer, yes? I mean, when you are confronted with your own mortality in this way, naturally you want to devote your time and energy to the things that are truly important. And, nine times out of ten, the things that seemed so drastic that previously occupied the space in your head are reevaluated, and replaced with the stuff of substance. How do you determine the " stuff" you ask ? Well it is different for everyone of course. For me, my substance is my loved ones, my family and my friends, the people that make up the rich, spicy stew that is my life.  I am blessed that those folks are so flavorful! I hate boring and I cannot imagine surrounding myself with anyone that is dullsville. So I don't!  I was recently told that one of my favorite spicy characters speculated that after my initial diagnoses, I only had a ten percent chance to live. Naturally at first I was upset. I mean, why would anyone say such a thing?! But, in light of my new found perspective I told myself that this was not worth getting worked up over, and that this comment was more than likely motivated by fear and certainly not meant maliciously.  One of the things I have learned in navigating my battle with the Walking C, is to stay off the freakin Internet. Unless it is a reputable site, which there are many, you can scare yourself silly. I have made the mistake of reading horror stories that propelled me into such a state of panic that I couldn't sleep for two nights. But, as I get to know my disease, i realize it's just that, mine. Everyone entertains cancer differently, everyone tolerates their treatment differently, and therefore has different results. And most importantly, when it comes to survival rates, attitude is everything! Hence, perspective becoming so important.  Most of you know that not terribly long ago, I battled a serious depression brought on by a major life change. It was a time of terrible loss, and the experience genuinely changed me and my life outlook. The funny thing is now, as I fight for my life, I would give anything for that to be my problem again! Don't get me wrong, not to go through that, but for that to be the biggest life hurdle would be somewhat of a relief... See, perspective again! Fortunately, time truly does heal, and since then I have been able to move on and have been lucky to welcome back into my life an old friend that had been lost. I also look at the experience as one of those situations where you realize that forgiveness is for you and allows you to free yourself from the heavy chains of bitterness and anger. And Believe me, there is no room for bitterness and anger in a cancerous body! The rooms they lived in are given to love, hope and positivity.  So anyway, I guess my point is, you learn not to sweat the small stuff. Everyday becomes a gift, and the people that fill those days are the ribbons and bows ( attractive gift bags and raffia...) haha... I am blessed to be here, blessed to have more people to love than my heart can hold, so I will keep stirring that stew, and use only the finest quality ingredients! 

Eric

Any of you who are fortunate enough to know Eric Coan, as I have been, know he is a good guy. Well, after having been his girlfriend now for quite sometime, I can say with great confidence that he is a wonderful guy and I truly don't know what I would do without him. When I was fist diagnosed with cancer, one of my first thoughts was, how is this going to affect my home life,my relationship, the family I have built? And as it turns out, I need not have questioned anything. From day one, my Eric has been right at my side. Attending appointments, asking questions, keeping track of the heaps on information that was thrown at us. He has sat through scans, procedures and chemo therapy appointments. He has held me when I cried. He has laughed with me when I didn't know what else to do. He has stayed up at night, watching me sleep, making sure I am comfortable. He has made 8400 cups of tea, 8401 much needed cocktails on the rough days, heated up  1500 " packs." He has listened to me complain and contended with the house full of visitors.  He is truly one of my warriors, another of my champions in my battle with the walking C. He has shown me love, and helped me redefine what I thought loving another person meant. I thank God for him daily. And I sure hope he sticks around!! Thank you for everything my love!

Cancer update for any and all who may be curious...

So far so good! To inform any who have not been in the know from the get go, I started on a chemotherapy regiment of taxol and herceptin approximately 15 weeks ago. Herceptin is a hormone therapy that has worked wonders with so many women who have my type of cancer, which is an estrogen positive cancer. Unfortunately this type of cancer is incredibly aggressive, so it takes extra work to stop it in its tracks. Last week I had another CT scan to restage. Thankfully, the results were extremely positive. The tumors have shrunk drastically and many have disappeared. right now the plan is to continue this cocktail and to try to incorporate the use of the drug TDM 1. Many of you may have received my mothers pleas to sign the online petition for the speedy approval of TdM 1. This drug has yet to be approved by the FDA despite 6 years of testing and yielding incredible results. Last month, my mother and I went to Boston to a rally to fast track the approval of the drug by the FDA. There we met several men and women who had participated in clinical trials and were alive because of the drug. My new friend Lorraine donned a shirt that said " I am a TDM 1 miracle." this was no exaggeration. Two years prior she had too many tumors to count, after flying to Virginia every three week to be part of a TDM 1 study. The tumors have since disappeared and she is now nearly two years with no evidence of disease. Is drug is genuinely saving lives. If you have not signed the petition, I implore you to consider it. I would really love to benefit from this drug. I want to stick around!

Apologies

I would like to take this opportunity to apologize to anyone who reads these for the terrible lack of editing. There are a ton of misspellings, etc. I will be more diligent in the future! Thank you in advance fire understanding!

Baby Stars

Those of you that know me know I am a champion story teller. I love to concoct my own, usually fantastic and far fetched, explanations of why things are the way they are. I have yet to do that for my cancer. I don't know that I can. I have certainly thought about it and have come up with practical explanations, Inge just happen. Sometimes shitty things happen to good people. And as I continue living with my disease, I realize that I am blessed to do just that, live. So I thank God that he is with me through this and I pray for him to continue blessing me as I fight for my life. I won't go anywhere just yet, not if I have something to say about it! But I digress. Stories. When we were very young my mother talked about the Jimmy star. The star that belongs to my brother. Just as she told us about our guardian angels. I have taken this story a step further as a parent and auntie to so many wonderful little ones. I now believe that each baby has a star, and the star first appeared the night they were born. As they grow, the star grows brighter. So my child and my bevy of nieces and nephews have stars to empower them. Their stars are there when they need comfort, when they are scared. The stars share in their joys and help them through their sorrows. Their stars house their guardian angels, and when the angels leave to check in on their children, the stars guide them.  I have often envisioned our babies wearing crowns made of pieces of their star. I saw the crown the morning my Ella was born. After a long and arduous labor my baby entered the world. And she was placed in my arms almost immediately. I gasped at her beauty and as I looked into her eyes, her angel appeared in the reflection. She winked at me. I looked at Ella's sweet baby head, covered in soft curls, and sitting there was a glittering crown of stars. It fit her perfectly. It only stayed for a minute and then was gone, but. Know it was there. It was fashioned by her angel, a reminder to me that i was not on my own with this baby. When times got rough, I need only look up at the night sky, and there I would find help. I believe her crown was made up of pieces of my star as well. That crown is the link between myself and my daughter, we share it's power, and our love gives it strength.  So in my head, the night sky is made up of thousands of stars, each one belonging to a precious little one. And I love this story because I love the idea that we are not alone in this life. And when I do gaze up at the stars, I feel connected. I am not just floating about pell mell. My star has given me extra power to fight my disease. I am fortified by its light. My crown in like an armor against the cancerous cells.  I hope my child and all the other children in my life are comforted their stars, and know that they are always looking out. 

Guardian Angels

Guardian angels My mother believes firmly that we all have guardian angels. I believe it to. They exist right along with miracles. Maybe they are even the miracle facilitators.  My mother is no stranger to the existence of miracles. My brother jimmy, is a miracle baby.  My mother had a difficult pregnancy with preeclampsia in her last trimester. She was bed ridden and jimmy was born two months prematurely. In tru jimmy fashion, he was born prematurely but weighed over 7 pounds ( probably a factor in saving his life). His lungs were fully underdeveloped and the outlook was not good. Never one to shirk strength where her kids were concerned, my mother refused to give up and jimmy was out iLife support and respiratory support and we waited. I believe they were there for two weeks, I have to dosome fact checking for this segment, wand I know my mother was faced with the horror of being released from the hospital without my brother who was not yet well enough to come home. This I can't imagine as a mother. Ella and I were able to come home the day after I delivered her And fitting her little baby body in that cars eat was one of the most joyous moments of my life.  So we went home as three, to return to Albany medical center everyday to monitor baby jimmy.  Insert---to baptize or not to baptize What family crisis isn't complete without a little discord among the members? Well we had ours. The argument was between my mother and grandmother ( her mom, who don't get me wrong is wonderful) you must get him baptized right away Mary ! If he dies, he'll just be a little baby head with wings floating around in purgatory for all eternity! We don't want that do we? My mother, rightfully distressed, responded that any talk of her son dying or becoming a floating head was unacceptable and he would be baptized in church when he was well which he certainly would be. Her son was a warrior from birth and did my grandmother actually think my mother would let one of her children die? Let alone die and become a floating Angelwing head?! Gram quickly got the message and in my head, was probabaly content to just sigh and make faces for the rest of their time in the hospital that day.  The guardian angel came through with a vengence and my miracle brother made a full recovery. He was brought home, where we welcomed him with open arms. Maybe not me so much. I tried to hit him on the head with a toy.  My brother is a warrior, he is my champion in the battle with the walking c. I think he has even given his guardian angels permission to come over to my team for the time being some have some extra power. He is the wolf that is my talisman. I believe he would be my patronus if I were a character in Harry potter. He is alive today because of a miracle. A miracle made of strength and love.  My mother is a warrior. She is my champion in the battle with walking c. She prays to my angels daily. She prays to God and the saints. She rarely leaves my side and when she does she always comes back with reneewed strength. She kept her child alive i the faced adversity and is doing it again 30 years later.  My father is a warrior. He is my champion in the battle with walking c. He uses humor( much like his oldest daughter) as one of his weapons.  he is fighting for my life right along side my mother. They are each others miracles in many ways.  Each guardian Angel is unique to the one it guards. We all have our own. Some are people we knew and some are not. They each have a different power they use to protect us.

The Walking C

Walking C small town girl contends with cancer I have never really thought of myself as a small town girl . My family being from the great city of new York, I had always been exposed to the bes of both worlds. Lots a culture, not necessarily sheltered. I was aware of other ethnicities and religions that a whole world of people and places existed outside the little town where my parents decided to make four home.  A descion apparently that did not come easy. My father who became enamoured with the upstate area through friends who were quickly tiring of city life. They aspired to open a restaurant in a town called ONEONTA my mother, still firmly rooted in new York with her family and close friends, followed reluctantly, probably under the impression that green lawns and small neighborhoods would be an ideal place to raise her family.  It turns out she wasn't wrong, and after much adjustment we olearys  became a permanent ONEONTA fixture. And created many many happy memories.  So more on small town. I like most teens loved the city I loved having the opportunity to visit and vacation. I considered myself quite cosmopolitan learning much of the NYC trends and getting into fashion. I even applied to a downstate school sunny purchase aprox 30 miles from manhattan but populated with hipsters and boroughers ams new jersey bridge and tunnel types so I felt like I had landed in my own small Greenwich village. Much easier to access from my dormitory on the small westchester campus.  Lots of fun there. Not necessarily collegiate appropriate fun, but I learned a bit about college and what it entails.  I searched bartending classifieds, looked on sublet .com at apartments I couldn't afford and dreamed manolo blahnik dreams. Couldn't escape despite how I felt I really wanted to the small town after all and after much drinking and misbehaving. Found myself once again at home in otown.  I will go back but how is this relevant to cancer diagnoses? I suppose I start with the day I found out I had my walking c.  I had been under the impression I was afflicted with a nasto case of the walking p. pneumonia that is. I had been ill for 2months with coughs and back pain and general malaise. I went to our small town urgent care clinic for a diagnosis got arithromucan was told my lungs were clear and sent on my merry way.  Things did not improve and after waking early one morning with an excessively panic doomsday feeling, I decided to head to the er.  Good thing... Enter small town doc: I won't really go through the hours of waiting. Mum was there with me, naturally we didn't think anything super serious. Although I might have now that I think of it. Yes, to be honest, I knew something was up. But I refuse to dwell of what ifs and it Is pointless at this point.  I had many many scans and tests. Beginning with a chest X-ray, a ct scan multiple sonograms and ultrasounds and an MRI. And a mammogram.  The er doctor, looking dismayed, came into the room what I'm sure was hours later. The radiologist read all your film, yadda yadda, you have cancer cells in your breast and lungs and spots on your liver. You can go ahead and cry if you need to. I didn't.  On  a chilly February day I was diagnosed with stage IV breast cancer, I am still figuring out what this means two months later. It seems to mean living inconstant fear and a state of questioning. I am waiting to see if I can find what the books are calling " my new normal" is it coming? I sure hope so. The first few nights are difficult to remember. I drank a lot, talked with friends, denied I'm sure a Bit. I was in the first stage of shock and grief. Not knowing what to do and not really being to,d what to do by the medical community at that point, our conversAtion was a lot so speculation and guess work.  Mom was looking for a fix. They all said call Sloan Kettering. She was on the phone the next day with the Lauder breast cancer center. The first available appointment was march 14 th. she took it.