doctor danda

James

2010-12-29T07:38:00.000-08:00

And to everyone I send all my love
and wishes for a New Year full of happiness.

James

Star Light, Star Bright

2010-12-27T22:04:00.000-08:00

Over the holidays I thought about what I could write that would be worthy of the end of such a long journey, but in that time I realized the journey is not over, it continues. Each of us will go on living with Alessandra's memory inked on our hearts and minds. We will each in our own way try to live our lives as Danda would have wanted us to...fully.

She taught us all so much about strength, determination and compassion; for she embraced them all. That smile of hers with those dimples and bright eyes, her laugh- it makes me smile as I can still hear it in my mind- this is the memory of her we will carry. Danda loved family and given her international nature surrounded herself with people who became part of her extended family. As we supported her we will continue to support James and Julian in the years ahead because that is what families are for and what she would have wanted. May her star shine brightly in the night's sky and continue to offer us light in our lives. May pink peonies remind us of her many layers and graceful beauty. Her spirit will never fade.

Much Love,

Alexis

A Diamond In The Sky

2010-12-22T11:44:00.000-08:00

Dear All,

As my daughter is no longer with us to share in blog dialogue and provide us with her words of courage, wisdom and love, it is time to bring the blog to a close, and I want to once again thank all those who gave Alessandra such love and support throughout her ordeal. A very special thank you to her cousin Alexis who created this blog - Alessandra’s voice. I would like to think that everyone has benefitted from it in one way or another.

Should you glance up at starry skies over Christmas, I am sure you will find Alessandra somewhere in the heavens, and you might just hear James singing his favourite song:

“Twinkle, twinkle, little star,
How I wonder what you are!
Up above the world so high,
Like a diamond in the sky.”

Wishing you all a joyous Christmas and a New Year overflowing with love and friendship.

Vicki

We are in the process of putting the blog onto a CD so if anyone would like a copy, please let me (vpriorelli@telefonica.net), Alexis (alexisrobinusvi@yahoo.com) or Chiara (chiarapriorelli@yahoo.co.uk) know.

A little goodbye

2010-12-22T11:00:00.000-08:00

Dear All,

As Christmas draws near and we've come full circle from the moment our lives changed two years ago, I just wanted to thank everyone for all the words and thoughts and support you showed Danda and all of us throughout this time. This blog stands, quite literally, as the last chapter in her life, and so, as this chapter closes, I wanted to leave you with just a few of my favourite photos from this and other chapters in our life together:

This one taken on a holiday in Mijas, Spain, when Danda was 13. It is so her - her face never really changed, nor that expression, and there I am, this little kid who just loves her to death, always looking up to her.

I took this in the playground at Holland Park, and I remember thinking how beautiful Danda looked that day; and watching her holding James so tenderly, it was the first time I really truly saw her as, not just my sister, but a mother.

This was taken this summer in the Caribbean. Defy anyone to say she looks sick in this photo. The truth may be that here she was riddled with cancer, but this photo merely captures my Danda, 13 again.

And this, perhaps my favourite photo of all time. It hangs on my wall. Taken by my uncle Geoffrey in Santa Barbara, California. Happy happy days. I want to run in a field with her again, run with abandon, run so fast that maybe today's reality won't catch up. But maybe one day, somewhere, there will be a field like this and we can run together again.

I miss you Danda.

Chiara

Turning of the seasons

2010-10-20T21:48:00.000-07:00

Hello all,

It has been a while, but I too am guilty of checking the blog often to see if anything new has been posted and to look back and re-read older posts. It was habit for so long it is hard to break the cycle. The blog is still at the top of my favorites list on both my home and work computer so even getting to see the words Doctor Danda daily make me feel comforted and serve as a reminder of my wonderful cousin Alessandra. Everyone who has followed or participated in this blog made it whole- it was worldwide a family, but in all honesty there is a bit of a void or emptiness as I write on this blank page now. Without Alessandra on the other end to receive my words I realize it was created for her and she made it what it was. Without her I admit perhaps it is time to close this chapter of her life. Vicki and I thought that at year's end it might be a good time to put the blog to rest, but I am going to leave it to her as to when she would like to do so and will certainly let everyone know before we decide to. But the good news is all the words and memories are captured as a reminder that we may revisit whenever we like.

I have promised Vicki that we would download and create a book for James of this blog and I will be in touch with Mary, who I believed managed to do it once so I hope can do it again to capture the final words of the blog. I would then be happy to email a copy of it to whomever wishes when the time comes- no need to respond now since we have not captured it all yet. On another note I did want to let everyone know that Vicki and Chiara had the chance to see James recently and there were happy to see that is continues to grow into quite the young boy. I think the pictures she sent along to me speak for themselves.

Much love to all always,
Alexis

Hello! Miss you!

2010-10-10T08:08:00.000-07:00

Hi,

How is everyone? I'm missing Alessandra soooooo!! much!! I hear James is doing well and I can't wait to see him sometime soon. He is talking more, going to be starting school in a few weeks. A couple days a week. He loves the yard and riding the tractor with his father. No surprise there! I'm so glad Alex saw some of that when she was with us. I'm not nearly the writer she was but I thought I'd try to give everyone an update like Alex would.

Not to mention I just needed to come back here today.

My thoughts are with each and everyone of you!!!!

Eve

2010-08-11T11:10:00.000-07:00

Hi,

I too check this every once in a while just to see if anyone else feels like I do and needs to believe Alex is still around the corner. Especially in the summer which is when we did so much together.

This picture was in Spain 2007. It was the best vacation we ever had! This photo sits on my desk so I can see her smile and just remember her chuckle I love so much.

I was recently in Maine and stopped in to visit Lisa which was so wonderful, even more wonderful was I finally met Alexis our Blog leader, I hope to do it more often. We all do need to keep connected as I know that was always so important to Alex. If anyone is ever in the area please don't hesitate to call and come by.

Feeling a bit blue today and headed over to Franciscan Hospital where Alex worked at one time so not feeling great about it.

Loads of love to you all and hope everyone is having a great summer.

Eve

Staying Connected

2010-07-29T21:08:00.001-07:00

Hello All,

I have continued to check the blog. It has become a habit, a part of my day, and a way to feel closer to the journey Alex was on. I love to log on and see her sitting there on the boat, sailing on the water. I miss her desperately and hope that you all are finding ways to stay connected. There are so many times I have imagined her reaction to a funny thought, her encouragement in the face of self doubt, or some words of wisdom when I need it most. I can feel her with me when I make decisions at work, when I have a good day, and especially when I need a friend. I am so glad that I got to know a bigger part of her world through the blog and just wanted to send a quick shout out to those of you checking in once in awhile.

Lisa
lshilley@yahoo.com

Alessandra on the "Alessandra" in her Lance Armstrong t-shirt

2010-07-06T08:24:00.000-07:00

On the back of the pamphlet printed for Alessandra's Memorial Service was this photograph and an excerpt from "On Death" by Kahlil Gibran, which I want to share.

"For what is it to die but to stand naked in the wind and to melt into the sun? And what is it to cease breathing, but to free the breath from its restless tides, that it may rise and expand and seek God unencumbered?

Only when you drink from the river of silence shall you indeed sing. And when you have reached the mountain top, then you shall begin to climb. And when the earth shall claim your limbs, then shall you truly dance."

Alessandra's Memorial: A remembrance

2010-06-30T13:27:00.000-07:00

ALESSANDRA’S MEMORIAL
June 18, 2010

This post was compiled by my mother Lisa, who wanted to share Alessandra's service with all whose lives she touched.

SETTING THE SCENE

For those of you who, in the far-flung corners of the globe, could not attend the Memorial Service for Alessandra, I will attempt to take you there, so that you have some closure. For you have all invested so much positive energy and love in Alexis’s blog and in your emails, letters and calls, sending wishes, hope, cheers, thoughts and comfort to Danda over the last year and a half. It is the very least one could do.

London perfect, a little drizzle falling from the sky, the service took place at St. James Catholic Church. It is an impressive edifice anchored to the corner of a narrow street and sitting cheek to jowl with the very English Durrants Hotel, one of the last hostelries owned by one family for generations.

A few small steps lead to the main entrance of the church, and once, accustomed to the dark, one’s eyes behold the soaring, vaulted space, the stained-glass windows and enough gilt to satisfy, but not cause sticker-shock. It is a user-friendly sanctuary with small chairs instead of pews. It was chosen to honor Alessandra, as it was where she was baptized and where Vicki and Marco were married many years ago. Full circle, if you will. Two huge vases of pale pink peonies graced the steps to the altar – their singular purity and beauty so fitting and reminiscent of Alessandra’s love of simplicity.

Father Christopher Cloven welcomed all, and speaking with a softness that forced us to listen carefully, he sought to convey what his church had to offer as solace. He sought to mitigate unspeakable grief and to ground us in the arms of God’s love. The simple eloquence of his words and prayers was easily embraced by the most fervent believer, and surely provoked thought from those who might waiver and question religion in their own lives.

There was no eulogy, but rather a summation of Alessandra’s place in the universe as evidenced through the tears and memories of family and friends – varied flowers from the bouquet of Danda’s life.

Courageous beyond my wildest imaginings, Vicki, forever Danda’s “Mummy”, rose to speak. Then Lisa Hilley, a Bristol University connection, who flew all the way from California to pay tribute to her best friend. Next, I muddled through, relying on a passage that had resonated with many people on past occasions. Then, Jessica, another Bristol University buddy who flew in from New York. Uncle Geoffrey, supremely capable and in control of his emotions, spoke off the cuff (a synopsis is attached). Then Giovanna, Alessandra’s youngest cousin from Italy, and finally, Chiara, the “little sister” spoke of her enduring love and undiminished connection to Danda even in death.

The musical selections were, quite frankly, glorious, in particular Faure’s Pie Jesu Domine sung by a soprano of exquisite voice and technique. This particular piece is so touching and so ethereal one wants it never to end.

Awash in tears, sprinkled with laughter, we “rose to the occasion”. Each in his or her own way, some drenching their pocket handkerchiefs, others biting their stiff upper lips, we honored Danda. Thence, (I think this a singularly British term), we repaired to the oak-lined bosom of Durrants for a libation. It followed that people who had never met each other became fast friends, shared stories, wept copiously, imbibed too much. Danda would surely have enjoyed the exercise, wine in hand, and nibbling on a piece of chocolate for a jolt.

There is a song in The Sound of Music sung by the nuns, in which they attempt to describe Maria, the young novice. They question “how do you catch a star and pin it down?” They further ask, “how do you hold a moonbeam in your hand?”

I submit that on the next moonlit night, you hold out your hand and envision Danda. There she will be – smiling. What to do? Smile back. LSC

With love, infinite love, LSC

WORDS SPOKEN AT THE MEMORIAL

****************
A MOTHER’S THOUGHTS FROM VICKI

If Alessandra had the courage to brave what she had to go through for a year and a half, I knew I had to find the courage to stand at this lectern. If I falter, then you’ll forgive me.

Seeing everyone here is certainly a testament to how Alessandra touched the lives of so many. There are friends and family here from as far away as California, the Caribbean, Boston, New York, Copenhagen, Geneva, Rome, and Madrid. I want to thank all of you who gave her such support.

Is there anything worse for a mother and father than losing their child? – it goes against the nature of things. The other day a friend of mine, who lost her mother as a little girl, said that when it happened, her grandmother told her “God just made a mistake. He should have taken me.”

And how hard it is for Julian to have lost his soulmate and mother of their child.

Alessandra and I shared a very special bond. We were always on the same wave length. There were few secrets between us. The silver lining of the last year and a half was that we could be together through the good days and the bad days, in laughter and in tears.

I have been blessed to have had such a beautiful daughter both inside and out and doubly blessed that I have another daughter, Chiara, equally as beautiful. A few days before dying Alessandra looked at her father and said: “Babbo, ascoltame. La tua figlia Chiara e eccessionale (Babbo, listen to me. I want to tell you that your daughter Chiara is exceptional.” Chiara and Alessandra also shared a very special bond, a bond that not all siblings experience, and it gives me comfort knowing how they fought the battle together.

Last month we were all in the Caribbean to attend the wedding of her cousin Alexis. Alessandra was determined to get there and she did. We spent some glorious days sailing on the boat her cousin Chris named after her: The Alessandra.

I would like to read a poem that many of you may know.

I am standing upon the seashore

“A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch her until at length she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says: ‘There! She’s gone.’ Gone where? Gone from my sight – that is all. She is just as large in mast and spar as she was when she left my side; and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her; and just at the moment when someone at my side says: ‘There! She’s gone,’ there are other eyes watching her coming and other voices ready to take up the glad shout: ‘There! She comes!’

And that is how I like to think of Alessandra – sailing off on a long voyage.

****************
WORDS FROM LISA HILLEY

Thoughts About Alex

I have known Alex for 18 years. That is just short of half my life. One of my favourite quotes is that “Some people come into our lives and quickly go. Some stay for awhile and leave footprints on our hearts”. That was Alex. We lived together for two years, and another sixteen were spent hundreds if not thousands of miles apart. It did not seem to matter; she remained a constant support and friend. I feel honoured to share a little bit about my friendship with Alex tonight.

We met in 1992 on her first day of her 2nd year at University, in Bristol. Alex happened to be my next-door neighbour in Clifton Hill House, one of the student dorms. During the first week, most students were excitedly running about meeting new people, finding local pubs, making plans, not Alex. She was busy unpacking her study notes, organizing her room and preparing for classes the next week. I arrived in Bristol and felt like a fish out of water – having grown up only in the SF Bay Area, driving around in a lime-green lime VW bus with my Birkenstocks and casual t-shirts. Alex was standing there in the dormitory kitchen in her ironed buttoned up shirt and long skirt – she had a much better sense of fashion, spoke multiple languages, and had lived all over the world. She quickly introduced herself and made me a cup of tea. We immediately found common ground on the study of psychology, our love of family, sisterhood, and of course cheese, bread, and chocolate. And so that is where it began for me, in the kitchen of Clifton Hill House. I am now convinced that all good things happen over a cup of tea.

Alex was serious and intense about her studies. She was driven and focused and excelled on every paper, project, and exam. I was living with Alex during her 3rd year project, which she chose to do on stuttering. She did not do anything halfway and wanted desperately to understand what makes people stutter. Perhaps motivated by her own experience as a little girl, but she also had an unusual curiosity about things and the discipline to give 150%. So, Alex set up an entire laboratory in her bedroom and recruited human research participants. Although I admired her persistence and passion, living with Alex during this time was nuts. She made me test out her machine with recorded voices using these enormous earphones so many times; I thought I would develop my own stutter. Alex had a very unique way of studying – that is, she would pace around her room and hum very loudly. I could hear her all the way in the basement and it always made me smile. Alex was smart, dedicated, and committed to whatever she took on. In short, Alex was brilliant. I was so proud of her when she obtained some of the highest marks for any student at the University of Bristol.

As you all know, there were other sides to Alex. She was humble, warm, thoughtful, loyal and fun. We shared some late nights out, movies, weekends away, crazy roommate stories, but mostly we talked and laughed over cups of tea. We often went ice-skating on Wednesday afternoons and she made me dinner more evenings than not. I can still smell the homemade pasta sauce and chocolate cakes. Alex was generous and kind – she put people first and always gave more than she was willing to take. At the end of our 2nd year together, we had been studying for weeks for exams. My room was a disaster with the usual clothes, coffee mugs, papers and books covering the floor. When I came back from my last exam there was a sign on the door that said “Congratulations, You Did It”. When I went inside, Alex had cleaned up every last piece of paper, vacuumed up all the crumbs, folded the clothes and left an amazing cake on my desk. The thing is, it was Alex’s last exam too.

We made a pact to stay in touch after Bristol. So when we both ended up on the East Coast for graduate school, she visited me in Baltimore, Miami, and Cincinnati. I made the trek to Boston as much as graduate school finances would allow. We met up in Philadelphia and New York City to be with our dear friend Jess. Those were great visits. We shared the challenges of graduate school and finding our way in life. She found her place in the field of psychology conducting neuropsychological evaluations with children. I have no doubt she was able to impact the children and families with whom she worked.

Alex and Julian were finally married and returned to London. There had been a significant period of silence, life was busy and chaotic, Alex was pregnant and in the process of setting up her Evaluation Centre, which was taking off like crazy. She was so proud that all the hard work was resulting in something so significant. So, when I got the call near Christmas time, I expected to catch up on the trials and tribulations of starting your own business, juggling kids and work, and the usual updates about family. I did not anticipate the news of a diagnosis. She told me very sternly that day “Lisa, I know that you will start reading and asking questions, but I do not want to know the statistics, I do not want you to say anything about the odds, I just want to live”. And so she did.

I think it was her aunt who quoted Thomas Carlyle on the blog saying “Permanence, perseverance and persistence in spite of all obstacles, discouragements, and impossibilities: It is this, that in all things distinguishes the strong soul from the weak”. Alex demonstrated the strongest of souls. She lived fully and she lived well. I always loved the poster that hung on her bedroom wall for years: “Live Gently and With Fire”. Perhaps that describes Alex best. Her humility and gentleness combined with her talent, drive, and determination made her the best of the best.

Over the past few weeks, I have been reliving those thousand cups of tea, the long chats. What she talked about most was her family and friends. She had an amazing respect for and appreciation of family. She so deeply loved her parents; her Italian and American roots were such a part of her identity. She talked often of her grandmothers with respect and awe, trips to the Caribbean and Maine where she felt so at home, her visits with her Uncle Geoffrey to California. I was always struck by the strong connection she had with her mother. I would be very fortunate if my daughters talk about me with even half the affection she talked about Vicki.

She always lit up when she talked about Chiara. I remember the first time I met Chiara, I think she was about sixteen and came during a school break. Alex took very seriously her role as big sister – she referred to Chiara as “Pickle Head” he entire week, made sure she studied, ate well and got plenty of sleep. I remember giving Alex a hard time and saying – you know she is sixteen, but Alex was a caretaker at heart. I was waiting for this big rebellion or fight, but the two seemed to have a way of being together and interacting that just worked. Over time, Alex would describe Chiara as her most solid supporter and friend. Chiara became the person she turned to in moments of doubt, fear, and anxiety. Chiara was honest and direct and could ease Alex’s worries within seconds. During my last visit with Alex, she told me that Chiara could get her to do the things she did not think she could do. I witnessed firsthand that Chiara’s very presence gave Alex courage, strength and confidence to maintain hope and live in the moment.

Alex sure talked about Julian. What a journey and what a love story. Julian made her laugh and step out of her shell. She repeatedly told me the story of an evening back in Bristol when Julian took her to the movies. Nobody else happened to be in the theatre and he got up on the stage and danced. Alex loved Julian and she loved him how he loved her. It was obvious in her words and in her actions and her commitment to their relationship. Alex struggled over the years to figure out where she most belonged, where she would call home. During a conversation just before she got married, she was clear that her home would be wherever Julian was. And so it was.

I was standing in my kitchen the other night and on my refrigerator is a definition of Faith. It says “Faith is to breath the flower in every seed, to see a star in every drop of dew, and to await the promise of a rainbow despite the cloud”. I have struggled to find the rainbow in all of this? But I think the rainbow is in her family and friends – who will live better and be better because of Alex. The rainbow is in the children and families she helped – especially those parents who will have a more hopeful perspective of their own children. Perhaps the rainbow is most in James – who is part of Alex. Alex often wrote and spoke about the unexplainable, amazing, and deep love she felt for James. I am confident that she will be his guardian angel throughout his life.

I am grateful that the stars aligned for me – that I happened to arrive in a place 6000 miles away at the very time Alex was standing there in the kitchen of Clifton Hill House just as the kettle was brewing. Timing is everything. In closing, and to Alex – I will think of you whenever I drive by a country house – the kind you always dreamed about. I will think of you when I ice skate and get the giggles so hard I cannot stop. I will think of you every time I have a cup of tea. Thank you for being one of those friends who come into my life and leave footprints on my heart.

****************
RELFECTIONS FROM AUNT LISA

Good evening –

I am Alessandra’s aunt, and I represent her American cousins from “across the pond”, as well as my late husband whose love and admiration for Alessandra knew no bounds. In fact, he and Danda are probably looking down on these proceedings, switching channels between this and the World Cup.

Alessandra was an amazing edition of humanity – elegant of line, keen of intellect, brimming with purpose, commitment, courage and abundant love – an ideal package, beautifully wrapped and tied with the ribbons of God’s Grace.

Ethicist, Michael Joseph has penned the following which, I think, offers pause for thought and sums up the very essence of Alessandra.

“Ready or not, some day it will all come to an end. There will be no more sunrises, no minutes, hours or days. All the things you collected, whether treasured or forgotten, will pass to someone else. Your wealth, fame and temporal power will shrivel to irrelevance. It will not matter what you owned or what you were owed. Your grudges, resentments, frustrations and jealousies will finally disappear. So too, your hopes, ambitions, plans and to-do lists will expire. The wins and losses that once seemed so important will fade away. It won’t matter where you came from or what side of the tracks you lived on in the end. It won’t matter whether you were beautiful or brilliant. Even your gender and skin color will be irrelevant.

So what will matter? How will the value of your days be measured? What will matter is not what you bought, but what you built; not what you got, but what you gave. What will matter is not your success but your significance. What will matter is not what you learned, but what you taught. What will matter is every act of integrity, compassion, courage, or sacrifice that enriched, empowered or encouraged others to emulate your example. What will matter is not your competence but your character. What will matter is not how many people you knew, but how many will feel a lasting loss when you are gone. What will matter is not your memories, but the memories that live in those who loved you. What will matter is how long you will be remembered, by whom and for what. Living a life that matters doesn’t happen by accident. It is not a matter of circumstance, but of choice. Choose to live a life that matters.”

Suffice to say, Alessandra did just that, and did it to perfection.

****************

MEMORIES FROM JESSICA PEREZ

Hello, I’m Jessica and I have also known Alex for 18 years. Lisa Hilley introduced us. I would like to share a short anecdote, which I believe highlights a side of Alex not seen by many.Alex and I had just seen The Saint and we both fell in love with Val Kilmer. (I’m sorry Julian, before you there was Val Kilmer and before Val there was Ralph Fiennes, but we all know she made the best choice in the end.) One of my favorite possessions is a binder Alex sent to me describing her whirlwind romance with Val. It was detailed and full of tabloid jargon and here are some of my favorite quotes from it:

“We met at the Children’s Hospital in London where I was working as an intern.”

“Realizing the time, I began to make the extra bed, but it got stuck under the railing of my twin size set-up…”

“Val and I grew close to Tom Cruise and his wife Nicole, but sadly we no longer see them because of a much publicized quarrel between the two men.”

“My move to New Mexico remains a distinct possibility…” Alex was creative, had a wonderful imagination and a great sense of humor. These on top of all of her other attributes made her an amazing and inspiring person and one of the greatest friends I will ever have.

****************
WARM THOUGHTS FROM UNCLE GEOFFREY

When Danda moved to Boston, her aunt and I bought her a little second-hand car so
she would have some mobility and it would allow her to get out of Boston and up to Maine. When I delivered the car to her, I did think to ask her if she knew how to drive. “Well, of course I do” was her reply. Nevertheless, it seemed prudent to go for a test drive before handing it over, so off we went. She was cautious, to say the least. Hands clenched tightly on the steering wheel, we stopped 20 feet short of every stop sign and when making a right hand turn we certainly occupied the left hand lane for longer than we should have. But after about 45 minutes I felt that she was solid enough to get around the local streets. At that point, I suggested that we get out on the highway. Well, the hands gripped the wheel even tighter and she
was sweating bullets. Once on the road, she asked how she was doing. I told her that I was not concerned about her hitting anything but was more concerned that a truck would end up in the back seat unless she sped up. I then remembered that as a child, Alessandra hated going fast in a car. But, by sheer will power she increased the speed and I felt she would be a safe driver, certainly not a reckless one.

The next time I drove with her, it was I holding on for dear life and suggesting that she slow down. She had become a speed demon!

That was the way Alessandra approached life. She had to study the situation, process it, weigh all the factors, and then proceed, knowing full well that she had looked at all sides of the issue at hand. Once committed, she threw herself totally into what she chose to love and honor and that is no more obvious than in her love for Julian and for James and for her family. Her honesty and passion for life, once she accepted it, could be seen in that smile, that wonderful, beautiful smile, which is what I will always see in my mind....that beautiful face with that beautiful smile......

****************
WORDS FROM COUSIN GIOVANNA

I grew up with Alessandra—not literally, because we lived in different countries, but our two families used to spend summers in Sardinia or Christmases in Rome or Madrid together. Alessandra was always happy to be with all of us, and she always seemed to be at ease with so many people around.

The thing that always impressed me about Alessandra was her positive attitude toward life. I remember that once—we were maybe 14 or 15—when we met for a Christmas, she was reading a novel that she had been assigned in school. She hated it because the author had a bleak and depressing view of life. She told me instead that her philosophy was that life was to be lived to the full. “People should get out of their shell and grab the good that comes their way,” she said, “instead of whine about all the negative things that can and do happen!”.

Alessandra always maintained her positive attitude throughout her life, even during her last year. We all read her posts on the blog, and we saw how she always focused on the silver linings of what was happening to her, how she liked to end her posts on a positive note, or add a line or a photo that would make all of us, and herself, smile. Her determined optimism, her eagerness to live life fully, and her ability to find the positive in all situations are traits that, at least in my eyes, defined her character the best. If there is one thing I learned from Alessandra is that one should always try and keep looking for the positive in life, and I cherish this lesson.

****************
AND EVER-SO-LOVINGLY FROM CHIARA

This is the hardest thing I’ve ever had to write, and for a moment I contemplated not speaking today, because how could I explain what Danda meant to me. How could I possibly convey the history, all the memories, moments, conversations, the smallest details – all these little pieces – that made my sister who she was, and made our bond such a close one.
I can pick a tiny fraction of these pieces:
The way she’d call me just to say
Goodnight
The way, even as two grown women, she’d still reach for my hand, in that protective big sister way, when we’d cross a busy road
The way we’d shoot each other a look in that knowing manner that said “I’m thinking exactly what you’re thinking.”

The way she comforted me when I needed to be comforted
Helped me when I couldn’t do it on my own
Talked me through things when my mind was confused
Championed me when I needed a boost

No matter how I was feeling, she would make everything ok.
I watch little James hold his comfort blanket, and I realise now that Danda was mine.

To feel that kind of closeness – where you know you can tell each other everything – truly anything – to feel that loved, to feel so protected and at the same time respected…that is truly something.

I recognize that I am so lucky to have had this bond for 32 years. But I wanted her for at least 32 years more. I used to worry about how short life was – always thinking about what I should be doing, seeing, achieving, as time seemed to rush by.
Now, without my sister, my life seems so very, very long. So I won’t pretend that I don’t feel an unfathomable loss.
But within this, there is, without a doubt, a sense of overwhelming pride – even more so now, knowing what an impact she made on so many others too – that this incredible person was my sister.

She will always be my Danda
And I will always be her Picklehead.
I know that I’ll still look for her hand when I cross the road
And I’ll ask her to listen when I need her most
I will say Goodnight to her at night, every night

I’ve always thought music can capture such depth and breathe of emotion – it can comfort, motivate, inspire. So I will say this - that Danda is my music, and for as long as I live, I know it will accompany me – lifting me up, driving me forward, making me sing.

Thank you for the silver linings

2010-06-22T08:08:00.000-07:00

Thank you Sally, for the glowing and detailed account of Alessandra's memorial service. I wish I could have been there with all of you, and this was the next best thing. I am sure that she is chuckling away at all the compliments, and blowing them off in true Alessandra style!

Speaking of silver linings, the other day I found a silver picture frame with a photo of the two of us on the Duraton field trip, 1990 - talk about vintage. This goodbye present, and a note in cheeky yet heartfelt Alessandra style, giving me her regrets and also her blessings as I left the school and moved into research in the US. The final sentence in the note was 'don't give up teaching altogether'. I didn't, and after all those years re-reading that wise little note again confirmed what all of the blogs have underlined. A very special person, Alessandra, unforgettable.

Celebrating Alessandra

2010-06-22T07:20:00.000-07:00

Dear all,

I am not sure who, if anyone, is still reading this blog. But, just in case there is at least one person out there who was not able to attend Alessandra´s memorial but would have liked to be there…I write. So, what to say and how to sum it all up? I guess that would be impossible to do, so I´ll simply say that, notwithstanding the deep sadness of the occasion, it was a beautiful ceremony. It was moving, heartfelt and personal with some of her closest loved ones taking turns to share funny and heart-rending memories, tears and humour. In essence, it was a tribute to all that Danda was and has left behind…so, so, sooooooo much!!! Vicki and Chiara were particularly courageous fighting back their tears and trembling voices, and honouring Danda through their touching words. Aunt Lisa and Uncle Geoffrey made us laugh with their funny anecdotes, and made us feel even more admiration for a person already so admired. Another Lisa, a very dear friend of Danda´s who came all the way from California, also shared a heart-warming account of how she met Alex 18 years ago and of all that she had meant to her. More friends and family spoke, and the underlying message was always the same…Danda´s capacity to give, to make things matter, to make people feel special were unique traits that have accompanied her since she was a child.

I remember that when I heard the news of Danda´s passing away, amidst the heartbreaking sadness, I felt anger, an obstinate resistance to this new reality, a rejection towards what, unfortunately, there is no turning back from. I could not understand how a life so beautiful and promising, both personally and professionally, how a person so exceptional and with so much to give could have her future stolen. Danda´s memorial gently transformed this view showing me the other side of the coin, the full part of the glass instead of the empty one, the silver lining of this incomprehensible loss…The memorial was a touching, emotion-filled celebration of Alessandra and all that she had managed to give, share and inspire in her short life. There are so many people who live twice her age and whose lives are not even half as rich, generous or meaningful as hers! As I listened to one homage after another, amidst tears, smiles and laughter (for those who loved her were faithful to her love of humour!), I suddenly realized the magnitude of Danda´s impact on people. I know she had always impacted me, I had always been in admiration of her since we were at school...and I know of countless other people at Runnymede College who felt the same. But at her memorial, I realized that her impact was just as powerful on those who had the luck to know her well as on those who met her for just a few moments. With everyone, she left more than a beautiful memory. She touched people, reached their hearts delicately and unobtrusively, uplifted their souls, and lit their days with her smile and kindness. Her presence was as gentle as it was powerful, her smile as graceful as it was generous, her mind as open as it was sharp, her heart as noble as it was strong.

Some say “è scritto nelle stelle” (it´s written in the stars), others say life (and death) is a lottery, others find spiritual or religious meanings. Whatever it may be, I think we´ll never really know the answer whilst we´re on this earth. Maybe the hardest (and most important) lesson in life is Acceptance, for it is only through acceptance that we relieve burdens we feel we cannot bear. I guess the best we can do is pay tribute every day of our lives to beautiful Alessandra, striving to make our lives MATTER as much as hers did and to give even an ounce of what she gave. Her Uncle Geoffrey summarized Danda perfectly: “she was always ready to GIVE more than she would take.” May her loved ones find the strength and courage to “overcome” this loss and may we all keep honouring Danda´s memory and soul by smiling with our expressions and our hearts every time we come across one of Life´s wonderful miracles, however small and insignificant they may seem…

With much love to all those who have shared this voyage, Sally

2010-06-19T08:26:00.000-07:00

Dear James,

When you get to read this you will probably not know of me. I have written just once on this blog. My name is Elena and had been Alessandra's colleague for about a year and a half at her wonderful clinical practice in London. I met Alessandra when she was 7 months pregnant with you. I would see her almost every day at work and often outside work. So, I only knew her for a year, but what a year: The happiest year of her life, because of you. And the most difficult year of her life. They say you really get to know someone in their hard times... I have quite come to believe that, although I had known her for only a brief time, I got to know a big part of who she really was as a professional, a mother, a woman, and a person.

I met your mother through a friend of hers who had recommended contacting her when I had just completed my PhD in Oxford, and was looking for a job in London and some advice by someone who could understand my professional background and aspirations ( Like her, I had also been trained in the US). She was keen to meet me and during our first conversation which was very helpful, she asked me if I could help her with a family she was working with (April 2008). I was happy to do so, and to make the long story short, what started as a one-time collaboration resulted in the most memorable partnership. Alessandra invited me to collaborate with her and for 14 months I got to share her cozy office, and work side by side with who I believe was one of the most kind, professional, sharp, thoughtful and creative psychologists that I have met in my life. You see, I have studied at Columbia University and Oxford University and have been exposed to some of the best courses currently available. But what I have come to learn, is that no textbooks, no training courses and no doctoral certificates, teach you how to connect with a child and his/her family in a way that is human and caring; in the same way that one would respond to his own child or family. That is how she was with the children and families that we worked with.

You also need to know how happy she was that year despite all obstacles. She would bring you in the office with a big smile in her face and that smile was there all the time. She observed you so proudly and talked to everyone about you. She was really, really happy. And although so often I would sense the same enthusiasm in her voice when she answered the phone to Julian with the typical "hi amor", I believe even he must have been feeling a bit jealous of you during that year!

What I thought was remarkable in all the time I knew her, was the authentic kindness towards everyone around her, despite the dark forces that could have threatened her purest spirit. With everything she had on her plate, she still genuinely expressed how happy she was for us when regular positive things happened in our lives and never ceased to care for everyone close to her. I will not forget a time when I was visiting London- sometime after I had moved back to the US ( Nov 2009)- when she called me to ask if she could reschedule our catching up time because she had to go to the hospital. Her words were along these lines: “Hi Elena. I am so sorry for having to change the day of our getting together. I know you are visiting for just a few days and must be so busy, but my appointment for some blood work was changed and need to go to the hospital during the time we were supposed to meet-can we meet another time? !!". The funny thing is...that she meant it in the kindest way that I heard it. This is who she was to everyone, at a time when she had every reason to hate the world.

Lastly, I want to disclose to you something she told me one time in the hospital when she was admitted after a complication of a chemo therapy. You were just a few months old. She was confessing to me how surreal her diagnosis was feeling to her and she became a bit emotional because she considered her self to be ‘healthy’. She went on to explain that her doctor had told her that the cancer was possibly masked by the pregnancy symptoms and therefore could have not been detected during her pregnancy. Suddenly, her facial expression changed all together, and with a real smile starting to form, she said: “You know what? Even if there was a way to detect it earlier, I would have never given up having James. James is my greatest gift". I will not forget the tone of her voice nor her look at that moment. You had been the source of real happiness, happiness that is not easily found in life.

Putting it all together, I remember your mother as a truly healthy and happy woman.

Our bodies might get injured, our bodies might get sick, but her mind and her soul were perhaps the healthiest mind and soul I have come to know.

Like everyone who thinks this way, I feel extremely privileged to have met Alessandra and to have been her colleague and friend.

Vicky, thank you for being such a wonderful parent. Alessandra must have received so much love in life to be able to give that much back to everyone...

Julian, thank you for making Alessandra smile the way I picture her when she answered you phone calls.

Chiara and Alexis, and everyone on the blog, thank you for creating this special blog.

Love,

Elena

2010-06-09T10:06:00.000-07:00

Dear Danda,

you and my fellow bloggers may consider me naive and immature (hopefully, not disrespectful) for still wanting to write you one last blog entry, but I guess we all have our own ways of going through pain and dealing with the incomprehensible losses of life. I thank Chiara for her heartfelt message to all of us, for her amazing strength and serenity in sharing the devastating news. I thank Vicki for sharing that beautiful, unforgettable smile of yours with us one last time. I thank James for making me giggle with him notwithstanding my tears as I re-watched his recent videos. I thank cousin Alexis for giving us all the opportunity to fill Danda´s last year with an endless outpour of love and admiration through this blog she created. I thank all the bloggers (and all who sent her those touching e-mails she always mentioned) for making this such an enriching and meaningful year. It has been an honour to be part of Danda´s incredible marathon of strength, determination, gentleness, grace and love! I also thank Julie for sharing that beautiful, comforting poem which is so true...a reminder that, as the physical beings we are, we are still are so attached to things our "spiritual friends" are beyond. In many ways, the poem reflects what I felt when I witnessed my father´s last breath a year and a half ago. I knew he was no longer in his body but I felt his presence stronger than ever. He was wrapping me, lifting me, showing me the existence of another dimension ("la dimensione cosmica" as he loved to call it!) which I had never felt so strongly. The struggle came after, when at times I doubted the existence of this other dimension and could not connect with my father as he had promised me I would be able to. With time, I learned to trust in this different type of connecting, and I have discovered what my father so often had explained. When loved ones leave this earth, their presence can become all the stronger and more potent as if, in some unobtrusive and delicate way, they were always watching over us, always listening and willing to comfort us. It´s hard to feel this now with you, Danda, as I am still in a mix of disbelief and tears. My heart goes out to Vicki, Chiara, Marco, little James and Julian. I wish I could do something to soothe the pain, and yet I know now is a time of acceptance of all that comes and goes. As you taught us, carissima Danda, we should be open with our feelings. We should not give into them but yes let them flow, for it is only this way that they can end up flowing out of us. I also wonder what words you are whispering to all of us, those words our tears are preventing us from hearing. I miss you soooooo much and can´t bear to think of the pain your loved ones and closest friends must be going through. I´ve been quiet lately on the blog, traveling like crazy and with big changes in my life, but serene knowing that you had been at Alexis´ wedding as your dear mother had told me last time I saw her in Madrid. I continued praying for you every night and was hoping that the "no news" on your blog was "good news". Not much left to say now, except this crazy idea that I want to make myself a mega-healthy Danda-salad for dinner! I remember taking the photo of that wonderful salad you made for us on one of my visits (the one your Mum put up on this blog), and so this will be my very humble way of honouring you. Dear Vicki, Chiara and Marco, I will be there next Friday. Please tell me if you need anything from Madrid, if I can be of help in any way, and if there´s any specific way you would want us to pay tribute to Danda´s beautiful person and admirable life. Love you, Danda, and thanks for all you´ve taught and inspired in me. You will be with all of us forever, I know...

rememberances

2010-06-07T19:54:00.000-07:00

Alexis -
I am writing this to you as the founder of this amazing blog. First, thank you so much for the effort you put into this, not only to get it set up, but to write so creatively and vigourously in the beginning to get the momentum rolling. You have no idea what a gift this blog has been to someone like me -- a loving friend who was too far away not only from Alex, but from all the other people who share my love of her. Thank you. I am eager to find a way to archive Alex's letters from the blog, but have not yet had the opportunity to do it. It's a little bit complicated because of the way the older posts get organized and displayed in chunks. Anyway...I find myself feeling anxious that the blog might disappear...an extension of the loss of Alex...before I can spend the time with it that I want to spend. I hope that you might leave this space active for a long while, and post a warning before access is lost. My anxiety about this is testament to how powerful and important this blog has been for me. Again, thank you. - Lindsay

poem

2010-06-07T08:04:00.001-07:00

Dear Friends,

I am similarly overwhelmed and devastated by the tragic news of Alex's death...even as I write, it seems unreal...

In times of great sadness such as this, I tend to seek poetry to help manage the pain, so I am posting a poem in hopes that it may help some of you....

"Do not stand at my grave and weep"

Do not stand at my grave and weep,
I am not there, I do not sleep.

I am a thousand winds that blow.
I am the diamond glint on snow.
I am the sunlight on ripened grain.
I am the gentle autumn rain.

When you wake in the morning hush,
I am the swift, uplifting rush
Of quiet birds in circling flight.
I am the soft starlight at night.

Do not stand by my grave and weep.
I am not there, I do not sleep.
Do not stand by my grave and cry.
I am not there, I did not die!
-Mary Frye (1932)

All my love to Vicki, Chiara , Julian, James and all the family. My deepest sympathy and hope for healing goes out to you.

Love, Julie

Memorial Service

2010-06-07T02:18:00.000-07:00

For anyone who wishes to attend, there will be a Memorial Service
held for Alessandra on Friday, June 18th, at 7:00 in the evening at:

St James's Roman Catholic Church
Spanish Place
22 George Street
London
W1U 3QY

If you need to contact me for whatever reason, my email is vpriorelli@telefonica.net. and mobile no. +44 7758594845.

Love to all,

Vicki

Golden girl and silver linings

2010-06-06T08:18:00.000-07:00

To Danda's family and everyone who contributed to the blog: I can only echo the beautiful sentiments that have been shared on the blog since we learned that Alessandra had died. I think of her as our golden girl, as she shone so brightly over the course of her illness and shared it so honestly with us and gave us so much inspiration and made us feel so grateful for every day in a new way. The creation of the blog was such a wonderful gift from Alexis to her dearest cousin and to all of us: I, for one, got to know Danda in a way I never imagined and she will always be a presence in my life; I feel connected to all of you who were part of the blog and to Vicki, Marco, Chiara and Julian, and maybe most of all to sweet baby James whose presence was her daily tonic even through the worst moments. Please help me know what the best way to honor her memory and all her good works would be.
Stay safe and well and as loving as you have been for so many months, troopers, cheerleaders, and wise counselors.

2010-06-05T19:01:00.000-07:00

I am heart broken. Part of me wishes I could rewind the clock five hours, to before I read of Alex' death, and live for a little while longer wondering how she is doing, wondering when I would see her, wondering when I would hear her voice. I am flooded with memories of times with her, and I wish for more. In fact, I'm flooded with images of the times I want to have with her, still. My love and sorrow pour out to you, Vicki, Chiara, James, Julian, Alexis, and everyone who loved Alex so. I feel like I need a pep talk from Alex to find my way through the pain. What would she say? What did she teach me? I think I will be digesting that question for a long time, but I'll take a first crack at it right now to cope with this night. She taught me...True grace and courage means feeling this pain fully, and communicating it honestly and vulnerably, without letting it drowned out the beauty, the wonder, the humor, the hope, the vitality, the simplicity, and the love around me. She taught me about true mindful living, and I will try to live that in her death. I know how lucky I am to have had her in my life. And I know she is still present. Alex had the gift of being able to sense spiritual dimensions of existence, and she had experiences that prove to me that our spirits live on and are present for our loved ones. I hope you all can feel her. I know she is there. With love - Lindsay

Family

2010-06-04T08:27:00.000-07:00

Dear Vicki and family of bloggers,

I was very, very sorry to learn of Alessandra's passing. The entries on the blog are a testimony to the wonderful impact she had on so many people, long before as well as during her battle with illness. It is also an affirmation of how powerful friendship is. I treasure what I have learned from all of you, from Alessandra as an adult rather than the 17 year old I taught, and from her beloved family and friends. While I may never meet many of you in person, I would like to thank you all for enriching this community with your words and thoughts. Alessandra, I know you'll watch over us, as always. Much love xxx

Thank you, Alexis

2010-06-03T19:12:00.000-07:00

for this incredible space. You gave Alessandra such an incredible gift over the past 15 months, and in turn you gave this gift to all of us. Just the love alone on this blog has forever changed my life perspective. And Alessandra leaves a legacy to inspire us all in her writings. I was blessed to have the privelege to know her and will forever be touched at the opportunity you gave us to be with her in her last year. I will miss you all.

My Dear Sweet Friend!

2010-06-03T17:53:00.000-07:00

I feel so blessed to have had such a wonderful visit in February with Alex. The gods shined down upon us and gave us a week full of smiles, laughter, and long talks. As we celebrate the wonder of our dear sweet Alex, I wanted to share some photos of moments that I cherish and hold close to my heart during these difficult days!

a smile to remember

2010-06-02T13:36:00.000-07:00

This photo of Danda was taken after a week in the islands. Alexis had just arrived and we were in the midst of a family reunion. Happy times .

I am so very grateful to all the bloggers and the followers who gave Alessandra such a morale boost during the difficult moments.

With love, Vicki

Horizons

2010-06-02T12:21:00.000-07:00

Dedicated to Danda- once we were young and had not a care in the world as we stared out to the horizon and pondered our next steps. Without knowing one day we would wed and what bliss it would bring us. Danda's smile exudes this happiness on her wedding day as did mine, made only sweeter by the fact that she was there to share it with me and my family. I was blessed to have her in the islands once again and will forever have her with me as I look out to the horizon.

Alexis

2010-06-02T09:11:00.000-07:00

Recent happy days aboard ALESSANDRA. James looks very much like a captain-in-training. Heave, ho and off we go to sail the Seven Seas!

To The Troops

2010-06-02T07:37:00.000-07:00

Last night, at 2.30am, Danda left us.
She was so happy to have been able to go to St Thomas, and even though she spent many days in bed resting or sleeping, and sometimes in pain, she had lovely days too. She got to watch James play in the sand and sea for the time, see Alexis get married, sail on the Alessandra and sit on the beach at Magen´s Bay. By the end of the holiday though she was in a lot of discomfort and we knew the cancer had taken a renewed and aggressive hold, particularly in her liver.
She was admitted to Cromwell Hospital Sunday night, just a day after we got back, and we´ve been with her there for the last ten days. They kept her comfortable and pain-free, and she never lost her fighting spirit or humour even though we knew she was well aware things weren´t looking good. She was put on a morphine drip so had her lucid and non-lucid moments, progressively less conscious the last few days. It was very fast. On Sunday we brought James to the hospital and she was up and talking and watching him play on the hospital roof terrace. Two days later we were told she would probably not make it through the night. We were all with her. She fought so hard, she was so tired, and finally she had to let go. So many nurses came to see her, visibly upset. Some had avoided coming to see her as they said it was too hard. Her doctor, Adam, told her she'd been an inspiration to the entire staff. One of her wonderful nurses Paul gave us a hug before leaving and said it had been a privilege to care for her.
It still doesn't seem real - that I no longer have my big sister with me. But so it is, and I just wanted to thank you all for this wonderful blog. It meant so much to her and gave her such strength, an outlet for her thoughts. If there is one good thing to have come out of this is that she got to know just how much she was loved by everyone.
I never wrote on the blog - a little superstitious thing perhaps, keeping all my focus on her. But now I just want to thank you, thank you, thank you, and that I´m so sorry she's not the one posting the latest message.
x
Chiara

2010-05-19T02:31:00.000-07:00

Hi there,

Congratulations to the newlyweds, hello to the London travelers who made it all the way across the Atlantic, and hello to everyone who opens this blog to check how Alessandra is doing. I haven't heard news in the past week, so I don't know if the trip to the Caribbeans is nearing its end. I heard that you, Panda, still had some pains despite the pain killers, but I am sure you had a great time, in wonderful weather and, what is better, wonderful company. I hope all of you are having a great trip and you will always cherish it in your memory.

Here the rain stopped, at last, after weeks of pouring, and I picked up the bike again, but without regularity. Panda, I miss your voice and your Lance Armstrong-like attitude!

Hugs!

To Alexis!!

2010-05-13T04:53:00.000-07:00

Hi,
Sending you all my best to you and your family for a wonderful wedding!!!
I can't wait for the pictures. I'm sure you are all having a great time and Chiara and Anthony probably have James at the beach every day!!
I'm so happy Alex is able to have this time with you all, which is so deserved and needed.
I'll see her in June and can't wait to to see her wonderful tan!!!
Alexis have a wonderful day and wonderful honeymoon. We all look forward to the pictures.
All our love to you on your wedding day!!!
Eve

2010-05-02T05:53:00.000-07:00

Great to hear the update, Alexis. Thank you. I'm so happy for both you and Alex about her plans to attend your wedding. I'd love to hear more about the clinical trial when someone has time to write about it. I know everyone is tapped right now. Like Julie, I think often about a trip to London. I would love to make it happen. For the friends who have managed visits already, I ask: does it make sense to try to coordinate with Alex and her family about timing, or is it better to make plans independently?
Lots of love - Lindsay

We're with you

2010-04-30T06:40:00.000-07:00

Alexis, thank you for the update! I'm so thrilled that Alex is going to your wedding (which I'm sure will be beautiful!), and I'm over the moon that Alex will be in the trial!!! YAY!!!!!!! That's fabulous news!
Alex, I think of you daily and have toyed with a trip to London to see you. It's a crazy time with my 2.5 month old and going back to work soon - but, I love you and I'd love to see you in person and give you a huge hug....we'll see. At this point, I think realistically I'll have to wait a bit for my babe to age....
But, we are with you all the time, and we hope you feel our love. Big kisses from Laurel (or more like slobber that you need to pretend is a kiss) and much love,
-Julie

Best Wishes!!

2010-04-25T15:51:00.000-07:00

Here's wishing you all a great wedding and reunion, and lots and lots of warm wishes from Philadelphia. I'll be thinking of you all and wishing I was there to join in!! Thanks so much for the update. Hugs and xxxx

can i post on Danda's behalf?

2010-04-24T15:47:00.000-07:00

Dear troops,

In last speaking with Danda she told me that she had been feeling overwhelmed as a result of her back pain and the radiation as well as trying to meet with doctors and get into the clinical trial. Understandable to say the least. So I thought since I had spoken with her I would take the chance to play secretary for a day until she found some time to write something on the blog. I may be taking a leap of faith that she will understand my jumping in, but I have been wanting to share the good news and perhaps publishing it would mean it was real.

So not to steal her thunder, but rather share in it, she called to tell me that she and the Priorelli/Murdoch clan had booked tickets to the islands. YIPEEEEEE! She told me that no cancer, volcano or any other hurdle was going to keep her from coming. This was HER time! She had her sights set on this day and nothing was going to keep her from the vacation she so deserved. I am over the moon about the news and cannot wait to see my cousin and her entire family. This is the best wedding gift I can imagine. Having her present will be so joyous!

On top of it she got into a clinical trial, but told them she could not start until after the 14th and they obliged. More good news!

She was still experiencing back pain and was told it would not subside until early next week after the radiation had a chance to do its thing. She was give morphine pills to help with the pain so I pray that has been working, but may be leading to her taking some down time.

Well, there are the basics that I think will help everyone feel in touch. Danda, I was just bursting and wanted to share my happiness I hope it is all still true and I have not reported anything wrongly, but perhaps this posting will lessen the anxiety to fill everyone in on the latest news and provide you with a little more down time until are able get back on the blog. Today marks the five day count down until you will be on a plane to the islands and their warm waters!

Much Love,
Lex

2010-04-23T22:22:00.000-07:00

Hi Panda,

The blog has been quiet lately... and so have I, letting work and a flu get the better of me for a few days. I've been checking the blog regularly though, and every time I saw Alexis' title to her latest post Cocoons spawn butterflies I imagined you spring up from under your blankets, with grace and a light step, no pain or trouble, a smile on your face and your arms extended towards James asking, "So, what do we do today?". Like a butterfly. (I keep up the visualization exercises).

I hope that by now pains and the need for cocooning are gone, or at least are less intense. How did the adventure of the clinical trial go in the end? I hope you made it in, but I also hope the schedule is such that you can go to S. Thomas for the wedding.

Here not much is new. Spring has finally arrived and the valley has become green and beautiful. A couple of weeks ago I saw the cherry trees in bloom, but the apple trees were only tentatively budding. By now they are probably full of leaves and flowers. As you can understand by my disinformation on the status of plants and flowers around here I've not been biking as much this season... yet. It will happen, I've just had a slow start :)

A big hug.

contact

2010-04-23T09:56:00.001-07:00

Just sending love to you, Alex, and to all the troops. Feeling too far away...
- Lindsay

cocoons spawn butterflies!

2010-04-15T14:55:00.000-07:00

You are a trooper! I am without words of wisdom because this is a journey that is truly your own. You are fighting this thing as best you can and it seems there are still so many unexpected hurdles. If you can stay strong and think positive thoughts you will triumph if only because you never let it get the best of you. When one is in pain it is nearly impossible to do so, but perhaps deep down you can find some strength to endure. I surely hope that by now you have managed to get your hands on some heavier pain meds. Is this a side effect of the last chemo cycle still? In the modern days of medicine there is no excuse for pain so I dearly hope you have been taken to hospital to demand something more.

As for the clinical trial I pray that you get in as it will be another piece of artillery against the cancer. Of course, you being you, are worried about missing my wedding. That shows you have not lost your inner self in all of this! You know the drill-you’ve been down that aisle before so to speak! Your wanting to be there is as good for me as you being there. But there are also the islands that you wanted to get to. They are pinned to the ocean floor so they are not going anywhere! You will come when the time is right. It takes merely a plane ticket, straw hat and bathing suit to make it happen.

YOU are all of our priorities and getting you well is of the highest! I am rooting for you in California. I think of you daily and wish I could be there to hold you and stroke your forehead. Think of all of us surrounding you and caring for you in those painful moments because perhaps that will ease the pain if just a little.

Danda, I love you and am glad to hear that your love for James and clearly is love for you make you smile. You deserve all the smiles he gives you. Hugs to you, Julian and James-I pray I see you all soon to give you a warm embrace.

I recently went to Palm Springs with some girlfriends for the weekend and what a hoot of a place. Stuck in the 50’s! Something about that warm desert air really appealed to me. Ironically I arrived back Monday and immediately caught a cold. Perhaps too much rest? Too much fresh air? Is there such a thing? The funniest part was thinking of Uncle Geoffrey (now nicknamed Rev. G. For Reverend Geoffrey! ) arriving in Palm Springs on motorcycle after his trek cross country and wondering what he must have thought about the desert and it s palms after all his years back east and in the Caribbean? We will have to ask him to tell us about it some time. Or perhaps you already know- you are the historian of the family! Just a funny thing for you to think about!

Much Love,
Alexis

Pink Warrior

2010-04-12T09:57:00.000-07:00

My dear friend,

I am so sorry to hear that you are having a difficult time. I heard a song the other day that I think you would like. Maybe it will empower you when you are feeling down. I was introduced to it through the website for the Susan G. Komen walk I am doing. It is called, "Pink Warrior". I particularly like the following verse.

Got an army of angels marchin around with her

She won't give in

Yeah she's gonna win

She's a pink warrior!

You my friend definately have an army of people that are with you through this fight, every step of the way and this is one army that will never retreat. You can find this song on itunes or probably youtube. It is called Pink Warrior by Candy Coburn.

So, to our very own Pink Warrior, you are stronger than you know. I love you and miss you so much. xxoo.

Mary

Waiting and Cocooning.

2010-04-12T07:07:00.001-07:00

Dear All,

Another long silence from me... a reflection that I have had a difficult stretch where, more than ever, I seem to cocoon myself away, hoping that things will be better when I poke my head out.

Julian and I went to see the consultant, Dr. Slevin, that had been recommended to us by Dr. Plowman, on April 1st. A soft-spoken man, he briefly covered my history, reviewed the documents that Dr. Plowman had sent him, and conducted a clinical exam. He confirmed that while my breast appears to be almost clear of the tumor, the metastasis remain the areas of concern, especially my liver. As the next step forward, he advised trying to get me onto one of two clinical trials that are being run in London for women with my specific type of cancer and profile. He said that I was a very good candidate given how physically fit I was. So, we were told that we would hear back last week... but nothing.... we are hoping to be told this week. This limbo has been awful - days pass by and you feel as if your life is "on hold". Also because this dictates whether or not I will be able to be at Alexis' wedding or go to the Carribean at all. (The thought of not being there with/for her breaks my heart - I have been looking forward to this for so long and it means so much to me to be there). We all have our fingers and toes crossed that, whatever happens, it will be the best thing for me and my recovery.

So, as I wait to be told of the next turn in this marathon road, I have focused on trying to get my body strong - I have not had chemo in 5 weeks, and it has been almost 3 weeks since the scans. Unfortunately the flu really knocked me down, and I can honestly say that only know have I begun to feel "clear" of it.

The worst bit of the past two weeks, however, has been the pain. I am now on daily, heavy pain meds, and the aches and shooting cramps are enough to take my breath away. They appear at the strangest of times, in different places, and they can escalate within minutes. Two nights ago, I woke up at 5:00am and was a mess. I would have done anything for a shot of morphine the pain was so excruciating. Hot packs add little comfort in those moments, but I always try whatever may help. So, I have spent days feeling miserable and very tearful, curled up in a ball wanting to "sleep it off", only to find the pain waiting for me when I wake up. This has really been an awful period for me. Admittedly, my morale and mindset have taken a beating.

But on a happy note ( there is always one!) James has been a sweetheart - he is so aware of my emotions, and such a wonderful combination of playful enthusiasm and cuddle comfort. He has been imitating more and more words, and is incredibly vocal in his expressions. Easter morning, he was introduced to chocolate (in the form of little smarties) and he was ecstatic - "Mmmmmm, Mama, Mmmmmmmm! We had a cosy day together, and a brief walk in the park, and lots of play time at home.

I have attached a video of James at my parents' house, looking a some ladybugs on the window sill (Note: he did not injure any of them with the doorstop he was holding in his hand!). I just love his innocent excitement. I just love all of him!

Hugs to all.

Pink gloves and Easter blessings

2010-04-04T10:35:00.000-07:00

Danda and family,
I hope you are having a gorgeous, happy day with spring flowers and a brimming basket of eggs for James and whatever else goes on for Easter Sunday in London. Rabbits are gamboling in our sunny yard but alas no children--all spending Easter elsewhere. However, we can't complain as we just spent five fun-filled days in San Diego with the two Seattle grandchildren and their parents and we will be with the three others within the next five days.
Loved the pink glove dance that Lolilla sent you! I hope everyone whom you see at the doctors' offices and in hospital when you have to go there is as spirited and full of hope as those folks! Very affirming.
I hope today your back and every other part of you is pain free. Ditto tomorrow.
Love to you and to all those who surround you and to all your troops around the globe, constantly awed at your forthrightness and grit and soul.

Pink Glove Dance

2010-03-29T01:02:00.001-07:00

The staff of this hospital dance their fight against breast cancer. Allegedly, if the video at the link below is watched 1,000,000 times, the hospital will get a big grant from the company who's manufacturing the gloves. So: dance along!

http://www.youtube.com/watch?v=OEdVfyt-mLw

you are brave beyond words

2010-03-28T21:21:00.001-07:00

Danda,

I waited for the news of your latest scan and along with you held my breath for the news. Although it was not what you wanted to hear it sounds as if you have grown to handle the news good or bad with a new psyche. One of a woman in control. One of a woman strong and powerful. I am so proud of this woman you have grown in to. This is not to say that crying face down on a pillow makes you like a child. It makes you human that when in pain (as you have been with your back aches) that you would not be forced to tears. Anyone would be and especially someone who has endured as much as you have. Athletes cry. You are the ultimate endurance athlete so even at your bravest you may cry-it is your right.

I know that St. Thomas is on the horizon. What a gift it will be to see you, and hold your hand under a palm. I look forward to the day as much as you do. The whole family together like years ago. What a gift you will be giving me to make it not only to the wedding, but to our home-a place where Gran our grandfather raised our parents and you will spend time with your son and husband and your family! I cannot wait and am thinking good thoughts as you prepare to meet with the new oncologist this Thursday.

I love you!
Alexis

PEACE AND QUIET

2010-03-28T04:50:00.000-07:00

Here's a little something to focus on when things are a tad tough. Transport yourself to St. John's Hurricane Hole, a series of watery fingers that creep into a huge grouping of green mangroves that hug the shoreline. It is absolutely the most tranquil spot on earth. Once in a while, a fish jumps out of the water sending small ripples to infinity. A pelican skims the treetops looking for a school of fry - a tasty hors d'eouvers in the early evening. A donkey brays in the distance far across the bay. At dawn a rooster crows, birds twitter and the breeze ruffles the edge of the awning. This is the ALESSANDRA at anchor. Chris gave her to his friend John Holmberg, his wife Diane and ll year-old son, Kai, for a weekend getaway as they could not afford to go off-island for spring break when other kids go skiing and Disney-Worlding. Messing about in boats, snorkeling, fishing, or just hanging out, is as good as it gets according to Chris. Agreed, said Kai, who pronounced it the best vacation ever! They staid an extra day. This is exactly why Chris spent a year working on this lovely lady - just so he can offer the pleasure to others, and he can't wait to pipe you aboard for your first sail, your choice of anchorage, and music on the stereo. But perhaps the music should be natural - the sounds of the sea and the rustle of the breeze in the palms. Soon. Very soon, dear Danda.

He's SOOOOO cute!

2010-03-27T12:22:00.000-07:00

These videos of James are so cute! I love the way he giggles happily with the most simple but loving games. He's great! I really hope that his giggles will take your pains and flu away... Hang in there, stay warm, stay put, and you'll be able to go home to him very soon.
A hug.

Flu Makes me Fumble, but Joy makes me Soar

2010-03-27T05:10:00.000-07:00

Dear All,

A short note because, since I last posted, I have been battling the worst flu, with high fever spikes (the nature of which has landed me in hospital 3 times this week... I had to miss the birthday party, as instead I was hooked up to an IV....so disappointing), bad chest cough, and bad cold. And my muscle pain in my back has been horrendous, so I have had to once again take heavy pain meds.... if it's not the chemo, then it's the flu.... I have been huddled in bed for days. I long to be pain free for more than a few days at a time!!!

Anyway, I have been feeling awful, and it has not helped my mood. When you feel terrible and in pain, the mantra "I am better than I was yesterday" is hard to digest. But I have been saying it anyway.... "I am better than I am yesterday, although I may feel worse...!" The usual daily tears, frustrated rants, and deep sighs, and then I just pick myself up and move on. Last night, however, I had my mother rubbing my back, telling me "It's all going to be alright", as I lay there and wept because of the pain, feeling all of 8 year's old. There is something about a mother's cool hand stroking your forehead that ranks number #1 on the "most soothing" list.

I have had to stay at my mother's flat, for fear of giving my flu to James, who only recently won over several weeks of a bad cough and cold. I miss him so! So, I close my eyes, and picture him playing and giggling...his joy is a wonderful sight from me to see and hear. Below are a couple of my favourite videos (with Chiara playing "Cyclops!", and with Julian playing chase) and above, a recent photo of him drawing with my father. Moments of joy.

Hugs to All.

BELIEVE

2010-03-23T18:25:00.000-07:00

Alex -
Amazing post, as always. And I so appreciated the chance to read one of your poems. It is glorious and painful and vivid. And I LOVE that nine days after you wrote that, I sent you an email, we had had no communication in between, in which I mentioned that the "the ground is getting more solid beneath my feet." You use the same words at the end of your poem. Maybe it sounds odd, but I love that small point of connection. It feels cosmic :-).

This post is going to get a long, now because I really want to transcribe something for you. It's not only inspiring, but raises some ideas about alternative healing practices to explore, both generally (somatoemotional release), and specifically (Dancing with Life on the Line...read on!!). And while we're talking about alternative healing practices, if you haven't already, PLEASE find a really good cranial sacral therapist!!

Anyway, on with my big-ass quote. This is from a book I'm reading called Callings: Finding and Following an Authentic Life by Gregg LeVoy. He is talking about (and at times quoting) Anna Halprin, the famous dancer. It reminds me of your story of the fabulous Ron. Anna had begun a process of drawing as feely as she could to express her inner life, and then she would "dance her drawings" to bring full expression to her deepest, truest voice. But one day she drew a life-sized self-portrait, and "in its geographical center, crouched in the middle of her pelvis, was a round, gray mass. It was a drawing she was unable to dance. Initially, she interpreted the mass as a symbol of an embryo, a scene of nativity, but she remained unconvinced by her own explanation because she refused to put it to the test: She refused to dance it.

"That night, lying quietly in bed and staring into the dark, she realized that the drawing was trying to tell her something she wasn't willing to look at. The next morning she went right to the phone and called a doctor.

"She told him about the drawing and she said she wanted him to examine her prceisely where she had drawn the gray mass, and when he did, he found colon cancer....

"Three years after a colostomy, Anna had a recurrence. She said she then knew she would have to make "drastic changes" in her life. When the doctor began outlining another radical operation and suggesting chemotherapy, she turned to him and said, "Give me two weeks. I want a chance to try something on my own first." That something was another self-portrait, which she described as "the perfect picture of health. I'm young, brightly colored, with my hair blowing in the wind, full of vitality. I suppose I thought that if I drew myself healthy, I would become healthy." But again, she couldn't dance it. "I tried, but it just didn't feel right, didn't strike a deep chord, didn't feel like me."

"In a fit of frustration, she turned the paper over and drew another image of herself, this one "black and angular and angry and violent." It was a dark, stiff, masculine figure, heavily armored and helmeted, stabbing himself with a knife, the colors all black and red, with blood flowing into a bowl on the ground. This, she knew immediately, was the dance she had to do.

"She did it in the company of "witnesses" -- family, colleagues, and students without whom, she said, she couldn't have undertaken what turned out to be a physical and emotional ordeal. It was a volcanic dance of rage and purgation not unlike the dances of rage done for the purpose of releasing stored-up anger and grievance by tribes such as the Dagara in West Africa. At the end of this exhausting dance, Anna collapsed and sobbed. "I needed the witnesses there to encourage me to go through with it, to face my fear, to express parts of me I've never given myself permission to express -- anger, grief, weakness, and vulnerability. They kept me honest, urging me to go deeper, reinforcing my sounds, calling out parts of the picture I needed to dance."

"Only then was she able to turn over the paper and dance the healing image. And only then was she ready to go back to her doctor, whom she prsented with one of the greatest surprises of his medical career: Over the course of barely three weeks, Anna's cancer had completely disappeared and has never returned.

"For twenty years afterward, though, Anna withdrew from public performing and worked on some of those drastic changes, on trying to figure out what her next dance steps would be. She especially worked on "my definition of art; why I danced, who I danced for, what purpose it served in anybody's life." She began searching for ways to make dance more "useful." She edged awayfrom theater toward ritual. She moved into a liminal zone between art and therapy, between dance and healing, and in 1981 she began working with people -- through dance and the "expressive arts" -- who were confronting life threatening illnesses such as AIDS and cancer.

"Her work with patients is based on what she calls the Five Stages of Healing, which outline a process of "identification, confrontation, release, change, and assimilation" of wounds and loss, personal and communal. she developed "Dancing with Life on the Line," a five-day workshop with a hundred participants structured on the Five Stages, which culminated in her giving a public performance attended by over a thousand people in the San Francisco Bay area."

If you are still reading at this point, thank you for hanging in there. I believe with you, Alex. I love you - Lindsay

Keep moving towards my goal!

2010-03-23T14:25:00.000-07:00

"And I keep moving towards my goal" I love it! It's great, YOU are great! (and a good writer too).

Thank you for the post, as you know I like very much to hear from you (although I'd rather not if, as Ron told you, you'd do better focusing on yourself...). I also like it that you go to a party instead of the hospital for the chemo! This new change of therapy sounds also promising, changes have always done you well in this marathon, and hopefully these new therapies are what you need to defeat this disease once and for all.

Alessandra ti ammiro tantissimo!

A big big big hug.

2010-03-23T12:46:00.000-07:00

Alessandra,
You are so beautiful, in every conceivable way.

Thank you for the update

2010-03-23T07:51:00.001-07:00

Hi Alex,

Thank you for sharing the afternoon with Ron. I am amazed when people come into our lives at just the right moment to give us what we need. While I desperately want to know where you are every minute, Ron is right - you must focus on you. I will use the silences to send extra waves of hugs, positive thoughts, and certainty that you are better today than yesterday. It is funny Alex, but I can just feel that you are better today than yesterday - I can hear it in your words and picture it when I close my eyes. Take every chance you can to focus on yourself. I don't think of it as selfish, I think of it as the best gift you can give all of us. I love you very much.

Lisa

Ron, Results & Resolution.

2010-03-23T05:01:00.000-07:00

Dear All,

Goodness, my silences are growing in length... not good at all... I know that I have worried many of you and I am sorry. I have so much to share and tell and update you on, highs and lows of the past few weeks. But have chosen to focus on just a few of things for this entry, in order not to compose a huge volume all in one go - I am verbose enough as it is. I shall post more news in the days to come, with photos and videos that I want to show you all. But for now, I want to tell you about Ron, results, and resolution.

RON:
A couple of weeks ago I, together with my sister and parents, travelled down to the town of Liss, or should I say village. An hour and a half's train ride south of London, I found myself in a place that boasted only a few shops, a supermarket, a pub and an italian restaurant. (We arrived at lunch and found that, being a Monday, no place was serving food, with the exception of an Indian restaurant outside of the village where we, yes, were the only customers...). Anyway, the purpose of the trip had been for me to have a session of Reiki with a woman named Kathy, someone who had come highly recommended by a family friend of ours. The session was wonderful, and Chiara in fact exclaimed when I walked out, "Look at you! You look rosy!" But the purpose of the trip had also been to meet Ron, one of Kathy's clients who, hearing my story, had agreed to meet with me and chat over a cup of tea.

Ron is a fireman - a down to earth guy in his mid forties with a heavy Cockney accent, fit build, and the kindest of faces. He had been diagnosed several years ago with oesophageal cancer which had, initially, responded very well to chemotherapy. But soon after, the cancer reappeared, this time much more aggressively, in his liver. He had lost over 50 pounds and looked "yellow". Chemo did nothing for him, and by the time his tumor had grown to the size of his palm, his oncologist told him that there was nothing more that they could do, and that he should go on holiday with his wife and children.... enjoy what time he had left.... When he came back for scans many months later, his tumor had shrunk to the size of a 10p piece (a 25 cent coin), and months after that, it had gone completely. He has been cancer free for more than two years. And that was the man who sat across from me at Kathy's kitchen table, and asked me, "What do you want to know? Fire away." And so began a conversation that I will never forget for the rest of my life, and that I will hold dear forever.

Ron shared, "Alessandra, you have got to believe. Believe. Believe that you are well, believe that you will be even better tomorrow. The mind is a powerful tool and you have to use it. I would go into those meetings with the doctors, and they would tell me their opinions, and I would say, "Okay, that's your opinion", but I would hold true to my own. They'd show me the scan results, and I would say, "Yep, okay, doesn't change anything." They would say, "Hey Ron, you look well," and I would answer, "I know. I am well". Whatever they told me didn't matter. Because I listened to me, I told myself that I was strong and I was not ready to go anywhere and that this was not my time to die. I believed that. I would look at myself every morning in the mirror and say, "PMT, Ron, PMT" which stands for positive mental thinking. When I was too weak to go for my runs, I bought myself a good pair of walking shoes, rain gear, and I headed out every day. And every day, I took two extra steps. Alessandra, every day, you have to take two extra steps forwards. And tell yourself, "I am better than I was yesterday". Even when you feel awful, it doesn't matter, because you are bigger than that, and you have to remind yourself, without hesitation, that you are better than you were yesterday....."

And Ron went on: he spoke about what alternative therapies/approaches he used ("Do I know which, if any worked?" he asked, " Does it matter? I believed that they were helping me, and that is all that was important. Find your own combination that you feel fits you, works for you, and as long as you believe, then it will.") He spoke about having worked as a butcher for years, and knowing full well what a liver looked like ("And so, as I lay in my bath every night, I would visualise myself cleaning my liver: I would visualise the cancer as dirty marks, and I worked hard at picturing myself cleaning my liver up. And do you know what the doctor said when they finally went in surgically to check my liver following the "surprising" scans? That he had never, in all of his years of practising medicine, seen a liver look so pristine. Pristine!") Ron spoke about the importance of "getting in the zone", of keeping focus, of being unrelenting. He also shared, "And this is your time to be selfish. You have to be selfish. Think about you. You have the rest of your life to pay everyone back for the couple of years you spend focusing on yourself." He spoke about the need to find some alone time in the day ("Despite everyone's best intentions to help, you are more often than not surrounded by people trying to do or fix or distract. And what I found I needed was just time for me to be with me").

And then Ron looked at me, and I started to cry. Because his look said it all. I will never forget it. He said understood the hell I am going through, that he had felt the fear that I feel. He had run the marathon and fought the battle. "Believe, Alessandra. No matter what. Believe you are going to be fine". I know that my words cannot but capture a glimpse of what it was like to sit in the presence of his man, to hear his words, to feel that I need say nothing because he knew what it was like for me. I wish that I could convey all that he shared, and could have had you hear his tone, seen his face, witnessed his look. I will never forget them. I will never forget him.

Since meeting Ron, he is part of my day. I tell myself, and those around me, that I am better than I was yesterday, and I do believe it. He is part of my visualisations, as I am on all fours cleaning my liver and he shouts, with a smile on his face, "Come on, Alessandra, you can do better than that! Clean this mess up!" He whispers, "Believe", in my ear, when I begin to falter. I see his look, inviting me to join him in that stubborn, determined, utterly convinced attitude. And when I cry, as I do in some moment of my everyday, I sense him saying, "I get it. I so get it".

RESULTS:
I got my scan results yesterday, and they were disappointing. Dr. Plowman opened our meeting with, "Well, you're not where I'd like you to be. This is not good enough". And so I sat there, and was told that all was stable (i.e., nothing had shrunk) except for my liver, where there were actually some new spots. (i.e., the cancer had progressed). While my eyes welled up with tears, I waited for the panic to hit me. Nothing. I waited for the despair to take over. Nothing. I had a strange sense of calm. Sad calm. Was it resignation? I mean, I haven't had good news from a scan since the summer of last year, so what should I expect... no, I did not feel resigned. Was it numbness at what I was being told? I mean, there's no way to soften being told that you have more cancer in your body.... no, I felt very much present. My tears were very real. I cannot describe the calm other than being the first time that I have actually faced bad news and truly thought, "Doesn't matter. I can beat this". I am so terribly drained, so deeply, deeply exhausted by this physically gruelling and emotionally battering journey. But if you were to see me, I don't look sick. I don't feel sick, other than what the treatment subjects my body to. Because I am well. I am alive. I am strong. and as Ron would say, "Whether you believe it or not, you are better than you were yesterday".

So Dr. Plowman sat back in his chair and said that he wants to bring in another consultant to look at my case. A good friend and long time colleague of his who is a prominent oncologist in London. He specialises in breast cancer, and has a private clinic, which grants him access to particular treatments and options that would not be available nor possible within hospital settings. He also is very connected to the U.S. and its clinical trials. So, we await a consult with him, probably next week. In the meantime, all treatment is on hold, which means that cycle #23 is not happening this Thursday... instead, I will be at the birthday party of one of James' friends, Harry. A much better way to spend my day.... :-)

RESOLUTION:
So, yes, I am emotional and frustrated and disappointed and tired and drained and saddened by the news of the scans. But I am not desperate, nor defeated, nor depressed. I am resolute. My blood work still shows that all my organ functions are 100% healthy (including my liver), I have not lost weight, and aside from a bad cold and fever that are making me feel awful right now, I am well. I truly am well. And if I can say so myself, I look pretty damn good for a 37 year old.

I think that I have told you all that I write poetry as a way to process this experience, to put my thousands of daily thoughts on paper, to give emotion a place to be outside of my head. I often reread my poems, my own form of therapy. Well, one that I wrote on March 10th, feels very relevant to how I am feeling this morning. Resolute.

I Am Here

I hold the future with both hands,
My palms are callused by this past year
My fingers weak, my skin worn,
But I hold on.
I see the future,
Eyes wide open
Visions of milestones, of memories to come,
I view the all clear.
I hear the future,
Quiet calm,
Away from turbulence and storms,
My breathing, my laughter.
I taste the future,
Sweetly my own
My tears salty but happy
The moments mine to savour.
My body is alive
My senses are awake
My present is a mere step
In the footpath forward.
I feel the ground under my feet,
Solid,
As I look ahead.
And keep moving towards my goal.

Hugs to all.

Another one of those days...

2010-03-22T04:39:00.000-07:00

Thinking of you Danda on this challenging day! I hope you got the sms I sent on Friday...I thought about you a lot imagining all the powerful visualizations you were doing throughout your scans. Here´s one more photo of the sea (yes I´m a complete devotee! Je, je!). I always find serenity when I look at our Earth´s vast blue expanse so I hope you get a bit of that sense too :)

Wishing you yet another mega dose of courage, strength, love and positivity to get you through to where you want to be!

Love, Sally

love

2010-03-21T18:09:00.000-07:00

Hi, Alex -
I've been so silent on the blog. I know you understand, and still I am sorry. I miss feeling some semblance of daily contact. I want to be one of those lucky people flying across the pond to see you! I am thinking of you tonight on the eve of your appt with Dr. Plowman, and I'll be waiting with every single finger and toe and hair crossed, in the company of your full fleet of troops, for the news. And I know there will be good pieces and pieces that don't live up to your hopes, and I know that you will need to feel pain and sadness and anger and fear and desperation again before this fight is over. And I know that you will open yourself to that and rise above it and find hope and faith and courage and grace, and that you will keep running and fighting and living and loving. I just know all of that to be true. I can't wait to see you someday and put my arms around you and look into your eyes and hold your hand and tell you in person how much I love you. Can't get much more romantic than that, eh?! ;-) - Lindsay

Belated happy birthday!

2010-03-20T17:46:00.001-07:00

Alessandra,
I'm sorry that I didn't know it was your birthday and I hope it was a festive, fun day! The symphony of rain that Giovanna sent you was the most amazing musical accompaniment to the chorus of happy birthdays that you hopefully received!!! Brilliant.
So now you are waiting to see Dr. Plowman and find out the latest results and now I am visualizing more than ever before and imagining a healthy, clean slate. The darkest hour is just before the dawn, they say, so if this weekend tests your patience and fortitude and includes some fear-filled moments, it's surely predictable. Hopefully the skies have cleared there as they have here after the worst storm in 80 years last weekend. Trees and lines down everywhere, no power for 48 hours (Jim calls it the easiest way to clean out the freezer), and luckily only 4 inches of water in the basement. When the sun came out on Friday and the temperatures went to 65, it all seemed like a bad dream. I wish you the same clear warm skies, the better to play in the park with James.
We are off to San Diego on Monday to meet Sam and his family who will come south from Seattle to spend 5 days at Sea World and the Zoo and LegoLand and the beach. I'll be thinking of you all there and hoping to read the blog again with positive messages when I return. Hang in there. XO

Not all rainy days are alike

2010-03-17T04:53:00.000-07:00

HAPPY BIRTHDAY!!!!

2010-03-16T05:37:00.000-07:00

Happy Birthday to you, Happy Birthday to you, Happy Birthday dear Alex, Happy Birthday to YOU! Echoing Alexis’ sentiment, I hope that you are being thoroughly spoiled today. More importantly, I hope that you are allowing yourself to be spoiled. I hope that if you don’t feel like cooking, you don’t have to, if you don’t feel like picking up after yourself or others, you don’t have to, if you don’t feel like feeding yourself or bathing or brushing your teeth or sitting up straight or laughing politely at other people’s bad jokes, don’t! This is your day. Enjoy your day. I hope that the powers that be have provided you with a sunny, warm day that you can enjoy in the Kyoto Garden (But please beware the flying biscuit!) and that perhaps someone has paid a visit to Pomegranate or Manguette… Happy, Happy Day to you! I’m wishing I was there to help you celebrate. I miss you, I love you.

xxJess

BUON COMPLEANNO!!!

2010-03-16T01:18:00.000-07:00

Happy Birthday Danda!!!!! Wishing you the "freedom of mind" your dear cousin Alexis mentions, as well as the joy, serenity and in-love-with-life feeling that the dolphin in this picture transmits! I´m sure little James will lighten your day as will all the people from all corners who remember you, love you, pray for you, and are thinking of you on your very special "Danda day"! Let yourself be pampered, and make sure YOU yourself pamper yourself! It is a time to celebrate all you have achieved, to celebrate one more year of life...no matter how tough it has been.

Sending you all the love I can from a springtime Madrid!

Love, Sally

happy birthday to YOU

2010-03-15T23:07:00.000-07:00

Happy Birthday Danda!!

Take today to look yourself in the mirror and celebrate you-strong, confident, successful, admired, determined, thoughtful, and brave you. You are one hell of a woman and we are all so lucky to have this day to celebrate you! Take a bow because you are an inspiration and we are all the wiser for knowing you! Do you get the theme here- you, you, you. For one day, be Alessandra plain and simple, let your mind be free of all else.

I love you!

Lex

My Challenge!

2010-03-15T19:18:00.000-07:00

Dear All,

I want to tell you about a huge event that I am participating in. It is the Susan G. Komen 3-Day Challenge. It is a 60 mile walk over the course of 3 days. I am registered for the event in Atlanta and it will take place October 22-24. I know, I know, 60 miles is crazy, but here is my reason.

Since Alex has been sick, I have felt so helpless, wanting to do something to help her beat this stupid disease. Well, I came across this walk and thought that I could raise money toward breast cancer research and maybe be a small piece of helping Alex and many others through donating to research and community programming.

There is one more reason. I recently had the pleasure of spending time in London with Alex. I experienced first hand the healthy lifestyle she has been living. She not only avoids germs, but puts only beautiful organic foods that are good for her into her body, and on top of all she is going through, continues to go for long walks in the park to allow the sunshine and fresh air to do its magic.

This visit made me realize that we shouldn't be sick before we realize that we should not take our bodies for granted. I decided to get myself to a healthier place and taking this crazy walking challenge is part of this.

So, if you are able, I am hoping that you might visit my personal page to make a donation toward my walk. Any small amount will help. Just think, collectively as a blog family, we can make a step toward fighting this F*#@KER. If you choose, you can visit www.the3day.org, click on donate, and search for Mary Nash in Jacksonville, FL. There, you will find my page.

Thanks everyone for taking the time to read this! Everyone here inspires me with every new post I read. This is truly a testament to what is good in the world. I will think of you all with every step of my training and Walk in honor of Alex's fight.

Much Love to All,

Mary Nash

2010-03-04T07:28:00.000-08:00

Dearest Danda -
I read with considerable anguish your latest blog, gnashing my teeth through the tough parts, and then basking in the sunshine of one of your sentences "I am not religious, but I am very spiritual".

I offer you this from a book I am reading by Joan Chittister. Chapter 2 is titled Spirituality, and I quote - There is a difference between religion and spirituality. There is a link between them, of course, but one is not meant to be the other. Religion is about what we believe, and why we believe it. It is about the tradition, the institution, the system. Constructed over centuries - more than five thousand years ago for Hinduism, the first formal religion - religion draws for the world a portrait of creation and relationships. It gives us creeds and dogmas and definitions of God. It gathers us in worship and reminds us of a world to come.

Spirituality is about the hunger in the human heart. It seeks not only a way to exist, but a reason to exist beyond the biological or the institutional or even the traditional. It lifts religion up from the level of the theoretical or the mechanical to the personal. It seeks to make real the things of the spirit. It transcends rules and rituals to a concentration on meaning. It pursues in depth the mystical dimensions of life that religion purports to promote.

When we develop a spiritual life that is beyond some kind of simple, unthinking attachment to an inherited canon of behaviors, the soul goes beyond an adherance to a system to the growth of the soul. Sprituality seeks to transcend the functionairies of religion to achieve an intimacy of its own with the mystery of the universe. Spirituality takes religion into our own hands.

Got that? Chew on it for a bit. There is a mystery as you look down from the top of St. Paul's. It is not the vastness of the space, the alignment of the pews, the rays of light through the great windows that brings you to tears. The very air seems permeated with an intangible. That is why you cried. That is why my eyes are moist when I behold any such a structure. I, too, am not religious, I am more spiritual, and it is that intangible that we seek, don't you think?.

Chittister goes on to say - Sometimes I know I am floating in a sea of eternal possibility. At other times, I know I am in a desert that cannot possibly quench the thirts of the soul.

If we could only bottle spirituality, we would rival Coca Cola!
Hugs, LSC xoxoxoxoxoxoxo

Pushing Through the Pain, and Persevering.

2010-03-04T06:47:00.001-08:00

Dear All,

Again I realise that too much time goes by in between my posts... and that when that happens, it is usually when I am going through a "bad patch". The past few days have not been all bad - far from it, but definitely "patchy", and yes, I have struggled.

Let's get the "bad patch" out the way first... this has been the hardest cycle I have had in the past 6 months. I have had terrible muscle pain/spasms and bone aches the nature of which have become an almost daily challenge. Trips to the hospital to try to figure out what is going on and, so far, they can only chalk it up to treatment side-effects. It has been depressing, given how much it has limited my ability to go out and exercise, and my sense of feeling "normal". I have needed heavy pain killers in order to get comfortable enough to sleep at night at times, and have had mornings when I have woken up in tears because I feel awful. I can't sit for too long. no position is comfortable. Chiara stayed over the other night while Julian went to Sevenoaks to see his family, and she ended up having to play nurse at 2:00am as I woke up in awful pain, needing medication and sobbing away. Lots of tears, not of fear, but of frustration and feeling very "low". In those moments, all I can do is push through the pain and tell myself through gritted teeth, "You can do it, Danda. Don't give up. Don't ever give up. You can do it". So, I have been feeling quite miserable, have cried a lot, and have missed having a "well week" in the midst of my cycle. Nausea, great fatigue. It really beats you down and it takes every ounce of willpower to say, "I'm still getting up, I'm still going to fight 150%, I am still strong and I can push through this". This feels endless. And here I sit, as I type this, in the Chemo Day Unit, having round #22 of chemo. Never a breather. I want a breather so badly. But then, I guess that you don't see marathon runners sit on the side walk and take a nap mid race? So, I have been given more pain medication and the message is "You just have to brave it, if you can". Bone and CT scans are scheduled for March 19th, and I meet with Dr. Plowman for the results on the 22nd. If all is progressing well, cycle #23 will go ahead March 25th.

On a lighter and much happier note, I have been lucky to have had visitors fly across the pond to come and see me, and that has been great for the morale and to help distract me from the pain. Many highlights of chats, of laughs, of shared tears, of hugs, of "I get it... and it sucks". I have loved the "hello's" and loathed the "goodbyes". I managed to go out a little, determined to not let the pain confine me. While I am not religious, I am very spiritual, and visits to Westminster Abbey and St. Paul's Cathedral reduced me to tears - I breathed in hope and faith and possibility, and lit candles in private prayer. In an act of defiance in the face of the cancer f*$ker, Mary and I climbed up the almost 400 steps to the near top of St. Paul's dome, and at the top, we high fived with "Take that - cancer my ass!" (not appropriate for the venue, I recognise, but so appropriate for the accomplishment!). Jess and Ian cooked me "Beautiful Soup" (literally, that is its name) and healthy salmon the other day, and she sat on my bed last night and chatted "just like old times"as I let the meds take effect and release me from the spasms and pain. One can bear a lot of pain and misery when you are blessed with such great support. And not a day goes by, in this rougher patch, that I don't appreciate every gesture, email, thought, message, call, and good wish from my troops. Can you imagine running a marathon without anyone cheering you on? Impossible.

I saw a nutritionist earlier this week, and will be followed very closely by him. Julian, Chiara and Anthony attended the consultation, and it felt like a good "fine tuning" and "revamping" of what I am currently doing diet and supplement wise. It was also very confirmatory of all the good that I had been giving my body and further proof that Julian's hours of research and attention to this, and Chiara and Anthony's dedication to everything had and would continue to pay off. More dietary lifestyle changes will be introduced which will not be easy (e.g., one supplement alone involved taking 68 capsules a day!....), but again, I am willing to do whatever it takes. I go for another, different, consultation (Reiki) on Monday, and continue, bit by bit, to find new ways to give body and mind strength.

James continues to produce pages of artwork, dance at the drop of a hat, and clearly express his yes's and no's and more's... he is a sponge of information, soaking it all up, yet keeping it most to himself... I am waiting for the morning when he will wake up, and simply blurt out a full sentence of "Good morning, Mummy! How do you feel about a change of nappy, some milk, and then some play?" He is doing well. More than well. These are some recent pictures taken when we went to Holland Park, by our home.

Spring still does not seem to have found its way here yet. Some glimpses of sun, but otherwise grey skies and cold cold winds. I saw crocuses in the park, but the daffodils are staying cosily underground, hoping for a warmer welcoming soon. I dream of Alexis' wedding in May. Just a couple of months away.

The chemo is starting to take effect, as I am feeling the "coat" coming on. Time to log off. Hugs to you all!

Hey You!

2010-03-03T22:54:00.000-08:00

Ciao carissima,

It's unbelievable the things you have to go through in this marathon of yours! I too, like the lady at the hospital, I often ask myself how you cope, and I understand your answer very well. However, even if the answer makes a lot of sense to me, I still think you must be an exceptionally strong woman to cope. Your decision of again suspending work until you are better must have been particularly difficult, but I'm sure you're right, it will help speeding your recovery. You are a tough cookie!

I hope things have gotten better in the meantime. I saw that London is getting a few days of sunny and not extremely cold days. Hopefully you are given the chance to take advantage of this faint beginning of spring and are spending some time outside in the sun (nothing like the sun to recover one's good mood!) with James (well, maybe nothing like James to recover your good mood!) and the rest of the troops. By the way, the latest photo Eve posted is wonderful! It was nice seeing you all together there. You do look good; the strength of your body despite the many chemos is clearly visible!

Here not much is new. Spring is kind of coming, we had a couple of days in which the temperatures didn't go below 0 and we had some sun, but I still have not hopped on the bike again. Instead, we finally tried the mountains. Last weekend we went to try a sled track 10km long with some friends. We had so much fun! I ended up once in a big puddle (the snow starts to melt this time of year), once almost against a tree branch, and many times off the track on the tight turns. Of course there were many bumps on the track and we hit them without slowing down while racing each other. The day after we were all suffering from aches all over the body. But it was worth! I suspect you wouldn't have enjoyed much, knowing how much you dislike the feeling of being on a roller coaster. Nonetheless, I wish you that soon the only pains you feel will be a consequence of too much fun rather than too much medicine!

A big big biiiiiig hug!

a spring fling

2010-02-28T21:50:00.000-08:00

Danda,

Thank you for sharing so much about your most recent bout with illness- I know it is so much easier to talk about the happy times instead of the hard ones. You are an inspiration of the power of positive thinking. Even when you think you are weak you show us all your strength. I love you with all my hear which is why I send you a taste of the outdoors from half around the world. I hope you can take in these pictures of my hike today and feel the cool air on your face, the warm sun on your back, and the clean, fresh air entering your lungs. I firmly believe the outdoors for just a short time everyday will give more strength and health than any pills. The earth is unbelievably healing-look at nature! It sleeps through the winter and by spring it comes up fresh and new every year.

I hope this spring makes you fresh and new-maybe some island sun, ocean breeze and lapping waves are your nature.

I love the most recent pic of you all--good looking crew!

Hugs,
Lex

Here comes the Spring

2010-02-22T21:09:00.000-08:00

Dear Alex,

I have hoped and prayed that the few weeks of silence meant you were off "living it up" as you say. Indeed, you were focusing on another gigantic hill (or mountain) on this long distance marathon. True to form, you could never just do a marathon, my dear friend Alex, you are on an Iron Woman course. Every hill makes it harder and harder for the cancer to put up a fight. I hope there are wonderful water breaks this week that allow you to feel free from the routine of treatment, to focus on the moment.

I have been trying to catch glimpses of the Olympics. It makes me think of you Alex. I think of you as I watch the skiiers fly through the air - years of hard work, focus, determination, and sacrifice to get there. I think of you when I see the faces of the gold medalists and imagine you up on that podium with your very own medal - that being - cancer survivor. I will be there at that ceremony in the audience - in awe and clapping as loud as I can.
I love you.

Lisa

THE TROOPS!!!!

2010-02-21T04:35:00.000-08:00

You all look marvelous!!!

This is the troops of all troops!!!

We love you!!!!

Have a great week and remember we are here for you always!!!

Love ya and miss ya,

Eve

UGH

2010-02-18T18:15:00.000-08:00

Alex -
Oh my. Quite a couple of weeks there, my friend. I feel so far away when I hear what you have been going through, and of course I am so happy to hear that things have turned back around. Your strength and determination are, as always, un-flippin-believable. And I'm so relieved to hear that you are feeling some "shifts" which allow you the space to take care of yourself first and foremost. Yes yes yes yes yes yes yes yes yes. I hear the Olympics in the background as I write this, and there is not an athlete among them who tops your will, your focus, your patience, your faith, your strength, your grit, your courage. Eyes on the prize, Alex, eyes on the prize. And speaking of your prize, your Valentine is GORGEOUS. I love you - Lindsay

Let Spring come along!

2010-02-18T14:11:00.001-08:00

Not much I can say except....EVVIVA DANDA!!! You are truly amazing and your closest troops too! And what a precious, joyful and innocently wise Valentine you have in little James. All that positive, loving energy multiplying around and within you will tire the cancer cells and, as Chiara says, will make them peacefully surrender until they realize there´s nothing for them to do in your body. The other day I saw a short documentary on a woman with cancer who had been given very little time to live by the doctors. One day she was walking amidst nature with her husband and they came across a sick tree. Its side was full of holes and it seemed dead. Then, to her amazement, she went to the other side of the tree and it was flourishing...it was beautiful and full of healthy branches and leaves! For her it was a sign that she could live with her cancer without giving into it, that she could really focus on nourishing all the positive things in her life (including her healthy parts) and continue living as did the tree. She has lived way beyond her "death sentence" nourishing her diet, her emotions, her mind and her soul and accepting those cancer cells that have remained stable within her. I guess there are many ways to beat cancer, and this one was quite suprising!

Un beso enooooorme! Love, Sally

Posting on the Blog

2010-02-17T06:05:00.000-08:00

Dear All,

One last thing.... I have had several people email me asking how to post on the blog. All you have to do is to send an email to my cousin Alexis, who set up this blog, and she will email you back with a link that invites you to become a blogger. As easy as that. Her email address is alexisrobinusvi@yahoo.com.

Hugs to all.

My Valentine

2010-02-17T05:48:00.000-08:00

Dear All,

Had to add another posting to share my Valentine. While Julian has held that place for close to two decades now, he received some stiff competition this year, and graciously stepped aside. James continues to be the most incredible source of joy in my life. He has gone from Pavarotti to Picasso.... we now have songs AND art exhibits in our home, as he has taken to drawing with crayons with a passion, as he sings away. He is more and more playful, cheeky, inquisitive, and mischievous by the minute. He showers me in nuzzles, gives everyone affectionate "squeezes" as he wraps his arms around them when they walk through the door or get ready to leave, and loves to cuddle in your arms. When I was feeling awful with chemo, he sensed it, and would walk over to me and simply rest his head on my lap, holding my hand. He was my Valentine. My wonderful Valentine.

Hugs to All.

Back on the Blog.

2010-02-17T04:21:00.000-08:00

Dear All,

This has been the longest "pause" in my blog writing, and I have to say that I have missed "connecting" greatly. I wish I could say that my silence has been because I have been busy "living it up", but the truth is that that past couple of weeks have been unexpectedly challenging. That being said, I am much better now, and that's all that matters....!

Two weeks ago or so, I began to experience pains in my lower back (I mentioned it in my last blog posting). I thought I must have picked up James awkwardly, or sat badly, or maybe it was an issue of posture as I had chosen to wear heels, which I rarely do these days. I also had a sore throat, so I thought I may be fighting a cold. Anyway, the pain came and went, and then spread to different areas, which was puzzling. By Friday February 4th, I was in bed, with hot packs, and a combo of intense dull aches and then shooting pains. By Saturday, I had a low grade fever, and went to the hospital to be checked out. I was sent home, after bloodwork. By Sunday afternoon, however, I was a mess. Fever was back, and the pain was intensifying. Chiara went with me back to the hospital, and in the space of an hour, I went from needing codein to having to be given morphine. My whole back, from tailbone to rib cage was spasming - I can only describe the pain as similar to the contractions I had when giving birth to James.... except this time, I was not getting the wonderful result of a beautiful baby at the end of it! I was admitted to hospital, and spent the next four nights there. The pain and spasms came and went. The team questioned an infection, musculoskeletal inflammation, kidney stones.... I had them stumped. Of course, my mind panicked thinking that it was cancer related, but the team was consistent in feeling that this was not bone-generated pain, and an ultrasound came back "clear" as to no new cancer spots. Admittedly, having the ultrasound was emotionally brutal. I lay there on the examining table, as the doctor put gel on my stomach and began to "explore"..."That organ seems fine, so does that, I see the involvement of the liver which you know of...." I tried so hard to fight back the tears but failed: the last time I had had an ultrasound, Julian was sitting with me, and we were looking at the screen at the image of a baby boy inside of me. One of the happiest moments of my life. Now here I was, avoiding looking at the screen altogether, as the doctor searched for cancer, confirmed existing cancer spots... it was a frightening and truly demoralising experience. Your life really can change dramatically from one day to the next, can't it?

I was discharged home in the middle of last week, and 48 hours later, I started Cycle #21 of chemo. I expected it to be similar to the first round of this new regimen, but it wasn't. It knocked me down and surprised me... the dreaded "chemo coat" was back. And I panicked. It has been 9 months since I had felt that "chemo coat" feeling, and reliving it again was truly depressing and scary. The feeling of your body dying from the inside out, the feeling of someone pulling the plug on your inner energy,... that weight that seems to smother you. Awful nausea, drenching night sweats. I realised how I had pushed all that to the back of my mind, and yet how intensely all the emotions and fears could be so easily revived by this "poison". Chiara, Julian and Anthony rallied around me, and I had my dear friend Eve visiting for a few days, who helped greatly with getting me through it. Many melt downs, much anxiety, frequent negative thoughts.... and then, a couple of days ago, the coat finally lifted, and I began to feel my body come to life again. Relief. I can only describe it as relief, when you feel your "inner being" pick itself up from the floor and feel strong enough again to stand up straight.

I feel good today. I went out for a walk this morning, and felt energised and "well". The woman in the mirror who looks back at me seems fine - she has colour in her cheeks, hair on her head, and determination in her eyes. If you were to see me walking down the street, you simply wouldn't know that I was sick. And that is what I continue to tell myself. 21 rounds of chemo and I am back up on my feet again. I focus on the number of chemo treatments I have had not for self-pity but, quite the contrary, in a positive way. "You've had 21 chemos!" I tell myself, "21!! And look at you. Dismiss the preconceptions of what you should look like at this point after all this treatment. Be a testament to how strong your body can be in this fight." Chiara tells me that this is a war of attrition.... there will come a day when the cancer will simply say, "Okay, I've had it. You win. You've proved a point. I'm done dragging this out...." What a day that will be. In the meantime, I keep on running this marathon, step by step, day by day.

While I was having my chemo, there was a woman sitting in the chair next to me, getting her own treatment. We struck up a conversation, and she told me that she had been diagnosed in October, that this was her sixth and final chemo session, and that her breast cancer had responded beautifully to treatment, to the point that it was hardly detectable, although they were going to proceed nonetheless with surgery. She was in her 60's, and spoke about how depressing and anxiety provoking she had found this process. She then asked me about me, and I shared my story. Her eyes grew wide... "How do you cope?" she asked me, "You look so cheerful". Coping.... it's such a personal word, isn't it? I cope because I refuse the alternative as an option. I cope because I have wonderful troops and an amazing family and a fabulous support system. I cope because I believe that I deserve, and will cross, that finish line. Coping can mean feeling strong and positive one day, and it can mean hanging on for dear life on another day. For me, coping is staying in the marathon. As I watched the Winter Olympics last night, many athletes "wiped out", with "DNF" (Did Not Finish) on the scoreboard. That will not be me.

Other news... I am making more "changes" in my life that will enable me to focus more directly on my health. I am putting my clinical work once again on more of a "hold". While the phone keeps ringing off the hook with referrals, and while I love what I do, I realise that I need to step away from it so that I can worry less about my schedule, my clients, the impact of unexpected changes in my health on appointments.... Yes, I will book the occasional family, but for the moment, my health, my family, my well-being will be all that matters. Work will be the afterthought. And while it has been hard for me to shift to this, having got back in the work saddle in the autumn, I have learned that I must be flexible to change, to the ebb and flow that life circumstances throw at me, and that nothing needs to be set in stone. So, this is the part of my marathon when I try to stop worrying about the crowd around me, and try to better focus on my breath, my pace, my body. Allowing myself more "me" time, and accepting the ever changing portrait of who "me" is.

I am so looking forward to spring. Bring on the pom pom blossoms, the daffodils, the crocuses, the freshness in the air that marks awakenings and new beginnings. It is one of my favourite times of year. Spring is full of possibility.

And if all the warmth that I have received of late in emails and messages could be converted into solar energy, we'd be skipping Spring altogether and we'd be in the throws of a heat wave of Summer. Thank you for your unfaltering love and support.

Hugs to all.

Pom Pom Tree-Spring is in the air!

2010-02-14T11:56:00.000-08:00

pom poms

2010-02-14T02:19:00.000-08:00

Dear Danda,

It is late and I cannot sleep so I turn to talk to you which has been a long time coming. I meant to write about my experience this morning, but instead went to yoga to "make my self shiny." It makes me laugh, but the laughter is worth the release. "Shiny" is the full expression of one's self--heart and chest wind open, hand open, toes and fingers spread. Your body drinking in well being from the air and people around you. Being shiny is what I try to do every weekend because we all need a little shininess!

I wanted to write and tell you that spring is sprining! It is still cold and very much winter, but the trees are beginning to bud and are taking notice that longer days are not far away. I know Spring is near when the California poppies in all there orange come out to meet the day and their dandelion counterpart is not far behind. But that is not all, we also have what I have come to endearingly call the pom pom tree. It is a big tree that branches out in front of our window and at this time of year produces the brightest yellow mini pom poms. Against winter's gray skies I have to say nothing makes me more happy then the sight of this tree in the morning. What makes you happy Danda?!

I love you.
LEx

A big hug

2010-02-10T05:50:00.000-08:00

Hi Panda,

Long time no see... Sorry for being away for so long, but work has been intense and I plunged into it with enthusiasm. I thought of you every day though, as it is my routine now, and sent you my good vibes daily.

I know how much you love your work and I've been thinking about it often since I moved here. Your work is your calling and you do it with dedication and passion. I admire that. For a long time (since I moved here actually) my work has been more stressful than pleasant. Sometimes I thought that I had lost interest in what I'm doing. But now things are moving forward in a good way and I like my job again. I still have a lot to learn from you, but I'm moving in the right direction! So now that I got some fire back I'm trying to catch up on many things that have been slowing down. It feels good... and it keep me busy!

In addition, we had Oori's sister's visit last week. She found a cheap last minute flight and, voila`, she improvised a visit. It was a nice surprise and we had such a good time, although we ended up not doing much (mostly working! and eating local food).

It was very nice reading the description of your day, even if it was a shitty one. Do you know the series of Fantozzi movies? It's (very) low level Italian humor, but it's a classic. Fantozzi is a man who can never do the right thing and everything goes the worst possible way for him. Your day felt like a sketch from one of those movies, like Murphy's laws in full blast. But I liked reading about it nonetheless, because it was so real and detailed that I could picture every moment of your day and I felt a bit closer to you. I could even feel James's nuzzle!

How have things been going since? I hope you had better days and more and more nuzzles. You should have had another chemo. How are the side effects? I want you to read that you had some wonderful day, a day that was happy from start to finish. I so strongly wish you to get back to normalcy soon! NOW!

A big big hug.

I'll have what she's having

2010-02-06T18:20:00.001-08:00

I'll take one James nuzzle, please!!
- Lindsay

Happy Happy Joy Joy!

2010-02-02T20:32:00.001-08:00

Found this picture and wanted to share it with my blog friends. Hopefully it brings a smile to your day as it did mine. So cute!!!!

2010-02-02T15:39:00.000-08:00

Although I am sure you have heard this many times, it is still full of good thoughts and wishes. And of course, the Irish connection is a strong one:

May the road rise to meet you,
May the wind be always at your back.
May the sun shine warm upon your face,
The rains fall soft upon your fields.
And until we meet again,
May God hold you in the palm of his hand.

May God be with you and bless you:
May you see your children's children.
May you be poor in misfortune,
Rich in blessings.
May you know nothing but happiness
From this day forward.

May the road rise up to meet you
May the wind be always at your back
May the warm rays of sun fall upon your home
And may the hand of a friend always be near.

May green be the grass you walk on,
May blue be the skies above you,
May pure be the joys that surround you,
May true be the hearts that love you.

I feel you already have many of these wishes, the hands, the true hearts, the blessings. We will overcome the misfortunes along the way, and something much more valuable than a crock of gold awaits at the end of the rainbow. Slainte, my dear Alessandra, with much love xxx

After a Shitty Day, All You Need is a Nuzzle.

2010-02-02T08:58:00.001-08:00

Dear All,

It is wet, and grey, and cold and miserable outside. No surprise for early February, but I could sure use some sun and hints of spring. As my dear friend Jess said in a recent email, winter will soon shed its skin, and I will feel the warmth on mine.

Yesterday was one of those days which I can only describe as shitty. I woke up after a terrible night's sleep, and got ready for my day at the office feeling pretty awful. The physical fatigue of this new chemo regimen is the worst of the side effects... it's not sleepiness, it's a state of "drained energy", which makes you feel "old" and makes everything seem like a big effort. Plus, I have been fighting a bad cold and the achiness and headaches that comes with that. A winter cold and chemo residues - not a combo that puts you in the best of moods. Plus, by the time I left the house, I had dropped things, spilled things, tripped over things. You guessed it - one of those days..

Anyway, I managed to get to work, and as I got ready for my first appointment, realised that the top that I was wearing was covered in awful yellow stains... some remnants of one of James' dinners as he chose to "play" with his food. Anything but professional. So, I had to make a rushed call home to my mother, asking her to please bring me a different sweater as there was no way that I could meet families looking like this.

I then proceeded to use the bathroom, which is just outside my office door on our floor, admiring the remodelling work that had been done over the weekend... Strange though, that they had managed to change the sink around from one side of the cubicle to the other... and I thought that the toilet had been on the opposite wall... hadn't it just been a weekend job?.... I then realised, as I exited, that yes, I was in the men's bathroom. No wonder it looked so different! And I have been in the building for three years.... I tried to ignore the puzzled looks of a couple of men on my floor who had been patiently waiting to enter...

I did a three-hour testing session, by the end of which I had excruciating lower back pain. Bad posture? Tension? Whatever it was, aspirin did nothing, and by the time I had my lunch I was wondering if I would make it through all of my appointments. My headache was pounding, my nose was bleeding everytime I blew it (low platelets), and I simply felt miserable.

But I managed to get through the parent feedback, and we finished late, after an intense meeting. I had to show the client out of the side entrance, as the building's front doors in reception had already been locked for the evening. As I tried to get the client re-oriented out of this different exit, I heard the door click shut behind me. "No worries," I thought to myself, "I have the code". Which I proceeded to confidently punch in, having said goodbye to the client. The door buzzed but did not open. Hmmm, that's a bit odd. I tried again, same result. And only then did it dawn on me that the locks had been changed a month ago, and now you always required your key to open the door when you enter the code. So there I was, out in the rain and cold, feeling lousy, no coat, no keys, no cell phone... locked out of the building. Crap. This was not a good scenario... after unsuccesfully trying the intercoms by the front door of several businesses that also have offices in the building, I see a woman come out the side door. "WAIT!!" I shout, "PLEASE WAIT!" ... and after a stuttering explanation that yes, I did belong in the building and no, I was not crazy, she let me enter. Thank goodness.

Packed up my things, and made my way home, feeling tired, unwell, worried (you become a total hypochondriac when you have cancer), and basically in a low mood.

But then I opened my front door and stepped into my home....

And I was greeted by the biggest of smiles from James who squealed as he saw me and proudly showed me his latest Lego construction. He handed me crayons to draw, and pointed to some of his toys, as if to say, "Mama, the possibilities for entertainment are ENDLESS!". So we played, and we cuddled as he drank his milk before bed. And then, nappy changed and in his sleepsuit, I lay him down in his cot. We have a ritual as he settles to sleep where I kneel by his cot and stroke his head and rub his back and give him soft kisses as I tell him how proud I am of him, how many things we are going to do together, how much I love him, and that I will always, always be there for him. James smiled and cupped my face in his hand. And then, as if he sensed that I had had a shitty day, he suddenly stood up, and out of the blue wrapped his arms around my neck... and gave me a nuzzle. There is nothing better than a nuzzle: we're nose to nose and then cheek to cheek, and we stay there for a while in the closest of hugs. And then he cosies his head on my shoulder, and nestles his face against my neck. James held me there for several minutes, his arms wrapped tightly around me, as if to say, "I am not going to let you go until you feel better". In those moments, nothing else matters. Nothing feels more wonderful. And then, with a quiet sigh and a smile, James let go, lay down again with tag blanket in one hand and his treasured fluffy sheep in the other, and drifted soundly to sleep.

In a matter of minutes, I did the same, comforted, soothed and protected by the love of a nuzzle.

Hugs to all.

connection

2010-02-01T19:12:00.000-08:00

Alex -
I want to have peaceful, inspiring and inspired words to share. Instead I'm kind of all a jumble. That's been true for awhile, which is why I haven't been writing as much. I decided that was silly. I don't need to write to be inspiring -- I need to write to be connected. So, know that I am out here, far away by land but holding your hand in spirit, and wishing I could be there right now. I love you and I want this f*&%er to go away and leave you alone. I want a long talk over tea, wrapped in blankets; or arm in arm walking through the city (remember the walks we used to take at lunch at Tufts?). I want to cry together and laugh together and find lightness together. Chiara is, indeed, full of light. I love hearing you describe her amazingness. Chiara, you are a true goddess.
Lots of love - Lindsay

Sisters Are Kick-Ass!

2010-02-01T17:05:00.000-08:00

Enough said.

Much love to you today, Danda. xxx Katie

short post

2010-02-01T06:15:00.000-08:00

Dear Alex,

Thanks for writing. I have been thinking about you a lot, and wondering how you are. I'm so glad that you have all the support that you do, especially Chiara. She's always had a lot of wisdom, and I'm so glad that she's right there with you.

It makes a lot of sense that you have doubts and fears because you're dealing with such unbelievably scary thoughts. But, I'm happy that you have armed yourself with responses before the thoughts barely sink in. I imagine it is a constant battle.

I don't want to idealize you because I know that you did not choose to be in this position, but, I hope that you know how much you influence all of your troops. It may sound silly, but with my impending childbirth and all the fears and unknowns, I so appreciate your inspiration and hope. Your strength is and continues to be incredible to witness. You have what it takes to beat this - and to beat anything.

Much love and strength to you.
-Julie

Those moments of peace...

2010-01-28T11:26:00.000-08:00

Beautiful Danda, thanks again for sharing. Sometimes I´ve wondered if we´re not making you feel "obliged" to write on the blog especially when your energies drain and your marathon becomes longer and longer. But then I read your entries and your sincerity, your generosity in sharing, your amazing capacity to transmit the good and the disappointing, are so overwhelming and touching that I know that this blog is part of your path to Victory! In any case, another heartfelt GRAZIE for making us part of your battle and helping us feel close to you.

I also wonder at times if prayers and positive thoughts are not better than so many words? But then, I love to read every entry of your blog followers (and I often wonder how many millions of beautiful personal letters you must receive!). And I guess that, after all, troops need to be a little noisy, no?:) Well, querida, I just wanted to tell you how happy I am you have such an incredible sister! I actually had no doubts but what you describe is a true confirmation that all the strength, beauty and intelligence we saw in Chiara when she was growing up was real, as real as it can get. And, through this experience, she is flourishing all the more...just as you are. Danda, do you realize what amaaaaaazing things you´ve achieved in this past year? Do you realize how many obstacles you have surmounted and mountains you have climbed, and not just physically but mentally and spiritually? You are not climbing one mountain but many, and with each one you are given the opportunity to grow more and surprise yourself more (I can see you saying: "I´d much prefer not to have to learn!!!" And you´re so right! We all wish you didn´t have to go through this!!). But remember how sad and disappointed you were when you had to cancel your first trip to Rome? And then, look! You have some great photos and even more beautiful memories to show that you made it to Rome and to your 102-year old Nonna! Yes, in comparison, getting to Rome is a smaller mountain to climb than defeating the cancer but these are all impressive achievements. I think you´re doing a great job of realizing how healthy and strong you feel given the circumstances, and that is no minor sign to ignore!

In this different stage of your marathon, I pray that you may find those moments of peace that you spoke of some time ago in your blog. I wish that those rare moments may become less than rare and, actually, almost as pervasive as the positive thoughts you successfully nourish in your mind. I wish that those moments of inner peace may help you find the last "bit" of strength you need to win this battle of battles. Although this may seem like a war, I think it´s more of a race, a very loooong one, a sailing odyssey across oceans of all types. So I wish that the time will soon come when you no longer need to wage war against the cancer for it will understand that it has taught you enough, that it has made you even stronger and more beautiful than you were before, that it has mobilized enough love and positivity to realize it has no point in being inside you. I wish for it to drift away, dissolve, neutralize, vanish on its own accord.

I guess we´ll never understand why some of us get such tough, scary, unfair challenges and others are spared. But one thing is for sure, we are all given opportunities to grow and discover our human potential and the best way of thanking life is to try to learn as much as we can and not succumb to fear. You are a living example of how to find millions of silver linings when a huge dark cloud looms above you. When that ominous cloud finally drifts away and dissolves into millions of harmless water particles, you will see and feel the warm rays of the sun that was always there but the ominous cloud didn´t let you see.

Once again, I leave with you some words I read and wanted to share with you:

"Faith is the ability to stay focused on love no matter what, trusting it to bring about wonderful solutions and miracles....Distrust, on the other hand, is the opposite: it makes you believe that you have to do everything yourself, and all things in life are won through struggling, worrying and competing. Of the two feelings, which do you think is happier and healthier?"

With much love, Sally

Strength, a Sister, and a Song.

2010-01-26T13:51:00.000-08:00

Dear All,

I haven't written in a while, having needed time to "regroup", configure a new battle plan, adjust to the new turn in the road...The past few days have not been easy, but then, is there anyone who thinks that marathons ever are?

My body braved Cycle #20 of chemo remarkably well - I feel that my body has become the battered tank that continues to take full frontal attack after attack while still steadily moving forward. It sounds surreal to say, but it is almost as if it has become "used" to this routine... chemo has been so central to my life for over a year now, that my body and it join in an ugly but purposeful dance of sorts. Some of the steps are familiar, some of the rhythm is predictable... and yet there is always a difference in tune and tone with every time. In this cycle, the worst was the nausea, lack of appetite and deep fatigue, but I did not feel pain, did not get the "chemo coat", did not lose my hair... The effects lasted the better part of a week, and then I could tangibly feel them begin to lift. Sweet relief. I think that the physical part of this marathon is what gives me most confidence, because when I look at myself in the mirror, I simply don't LOOK like I have been through 20 rounds of chemo. I don't FEEL like I have been through 20 rounds of chemo. Today I woke up, made it through my day, and I felt normal. Energetic. Hungry. I contradict my own preconceptions of what someone with my illness and my experience should physically look and feel like. And so, I hold on tight to the strength that my body continues to show me.

My mind and emotions, however, have braved the past week with much greater difficulty. The recent scan results really knocked my confidence and showered me in doubts and fears. So much so, that I have had to actively work at getting back my determination, my positive attitude, my belief in possibility. I now say a set of affirmations throughout my day, something that has proven to be particularly effective when I am battling "negative thoughts" - it is hard to think negatively when you are saying something positive. I say these at any point in my day - in the shower, walking down the street, in bed, while I am cooking.... out loud or in my head, the statements are helpful ways of keeping my focus. It may sound strange, but I can sense a negative thought coming, and I immediately revert to my affirmations, allowing them to take centre stage instead. And yes, I still visualise and am trying to integrate more moments of meditation in my day.

But it's the people around me that continue to be such a driving force for me. My family has been wonderful in helping me with this, and you all as my troops have also been incredible morale boosters in all of your messages. But I have to make special mention of my amazing sister, because Chiara has been the one to really pull me up lately and keep me in this race. I cannot begin to describe what her pep talks are like, but they are a perfect combination of fact, of logic, of attitude, of patience, of conviction. She does not sweet talk, nor sugar coat, nor patronise. She is reactive and proactive, she is understanding and empathic, she is encouraging and persuasive. She listens to my worries, she talks me through my tears, she guides me out of the dark dead ends. She holds me tight in my lows, and kicks me in the ass when I need it. What she says makes sense, and in resonating so clearly it brings me a degree of comfort that is unquantifiable. She embodies belief, perseverance, dedication, and love.

And she is there for me without fail. Take, for example, this past Sunday. I was walking through Hyde Park with my mother, and as I watched the couples and children and families and runners around me, I became overwhelmed with a deep sense of sadness and anxiety, and burst into tears. I felt in my own little "solitary bubble", set apart from the happiness and carefreeness of those I saw, and wishing so desperately to have a moment of that reprieve, of being able to feel the weight of this illness lifted off my shoulders just for a while. And the emotion was such a wave that I couldn't pull myself together, so much so that, right there, I took my mother's cell phone and called up my sister. For the next 30 minutes, Chiara talked me through it, with my mother all the while keeping step next to me, holding my hand in quiet support as I voiced my thoughts into that cell phone, and let Chiara's words sink in in return. By the end of the call, I was okay again. The sadness had subsided, the suffocating weight had lifted, and I felt strength return. Chiara is there for me, in that way, day in and day out. Yes, this marathon has waves and winds and bumps and hills. But I have Chiara, and not only is she running next to me, but she is half carrying me on her back all the way to the finish line. She is a truly remarkable person.

And talking if people who do me a world of good.... James is thriving. He is now the master of Legos, building towers and yet to be named contraptions, which he brings to life with "Brrrmmm, brmmmm" sound effects. He has discovered the joy of drawing, and he will sit for minutes on end at a little table we have in our living room, with crayons in hand, colouring away. He loves to walk, run, climb, tumble - all toddler, all boy. He is so playful, so sociable, and his giggles are infectious. And he sings - he is a child who simply loves to sing. His song is what wakes me up in the morning, as I hear him singing a tune from his cot. His song is what fills our home as he happily putters around in exploration. His song is what brings our day to a comforting close as he hums his way to sleep. I just adore it. I just adore him.

Time for bed. Tomorrow is another day. One step closer to the finish line, with a strong body, an amazing sister, and a song in my heart.

Hugs to all.

rain, rain go away

2010-01-23T10:49:00.000-08:00

Dear Danda,

Thank you for sharing all the pictures. Nonna looks amazing and so do you! Remember you have Nonna's genes-there are none other that I would want to have for strength than that of an Italian woman! Thank you for sharing your news-it takes great strength to share disappointing news. I suppose that there is fear that if you say the words they might in fact be true. But it is true and we all have to succumb to a new battle plan and a longer fight, but like Nonna we are in and will prevail.

It has been raining here for a week. Relentless at times. It seemed every time I walked out a door it rained harder...in sheets....as I pushed my umbrella against its force and made my way to my next destination. But for a brief moment yesterday the sun broke and set the evening sky aglow with blushing clouds. It was a beautiful sight and I thought to myself without all the rain this scene would not be possible-sometimes with gloom comes beauty and fresh perspective.

The cancer is the rain that seems to be never ending, but you are sun that continues to poke its head through and create these moments of unbelievable clarity and rays of beauty. Danda, do not give up, if you have the strength use it, we will be there to bolster you up when your brow becomes furrowed. We have you. Trust that we are there to keep you strong when you feel weak. And nearer and dearer you have James and Julian your knights in shining armor who will be the smiles that keep you smiling throughout each day.

I love you and are praying that this new cocktail of treatment causes the cancer to retreat. You deserve a break from it all-can you keep the islands as that vision on the horizon where you will sit under palms and wade in gin blue water? You must look to the future to keep you going; I am.

Hugs,
Alexis

Tomorrow comes the Song

2010-01-21T11:57:00.000-08:00

Danda, I saw this photo on National Geographic's website, taken of a cube of sea water. I think it's being offered as wall paper among other things. A jigsaw puzzle might be made from it as well! In that little cube there were over 600 individual organisms, all co-existing. It seemed a minute part of A GRAND DESIGN into which we are all thrust in our turn and which we make the most of in our various and sundry ways. You and all of us are part of that "puzzle." Why it is that you have been dealt the blows of "outrageous fortune" and not some other one of us is totally unanswerable, even as we rail against the unfairness of it and want to take Fate on in a dark alley with brass knuckles. I know we are all hovering close by, eager to surround you with love, encouragement, positive thinking, whatever we can to sustain and comfort you, especially when the news is temporarily not so hot. We will not rest tranquilly until you are over this hurdle, but like all these little sea creatures we are bound together to you and one another, believing that you WILL overcome. Alexis is right: you've got all those fine longevity genes from your nonna and they are stronger than the gene that has somehow gone awry and created this mess. There is a clear spot somewhere up ahead. At the end of the day at sleep-away camp, the director used to say, borrowing from a source I can't remember, "Faint not, fight on, tomorrow comes the song." I'm warming up my voice for that tumultuous day. Sending love to you and all the family.

An Environmentally-Unfriendly, Overheated Apartment

2010-01-19T07:43:00.000-08:00

Dear Alex,

Thank you for so bravely and generously sharing all of your news. I’m happy that you had a wonderful time in Italy and the story of James climbing stairs is unbearably charming. I’m sorry for the news of the most recent obstacle.

I agree. I look at these photos of you and I wonder how it could be that this person has advanced cancer, has undergone 19 rounds of chemo? She looks so vibrant and light and healthy. If that isn’t the face of strength, I don’t know what is. I am proud to be one of your troops. You are an amazing commander.

To further illustrate your strength for you, I will offer you a comparison. I will share with you a story about someone who demonstrates less strength, much less strength. The other day, Ian and I were walking in the park and it was cold, really cold, and I hadn’t dressed properly. My arms were freezing; my eyes were watering and the eye water was thickening in the cold air; my thighs were going numb (and they’ve got a lot of “protection” (fat) from the cold, so that tells you how cold it was); and between my audible complaints and whining, I kept longing to slip off the road and find a nice tree to curl up under on the ground. I wondered if Ian would notice and if he would go for help and if help would get there in time or if he would need to curl up on the ground too or if wild dogs would find me and eat me. None of these scenarios were appealing, I don’t like lying on the ground and I think I would not like to be eaten by wild dogs either, so I kept going, but I complained and complained. And Alex…I was just cold! That’s all it took for me to have hysterical thoughts. And I knew that we would eventually walk into our environmentally-unfriendly, overheated apartment.

I don’t know what it is like to fight so hard and for so long as you have. How exhausting it must be. More than exhausting even. I wish I could package up some energy, health and happy-feeling and send it to you. I wish I could tell you where your finish line is exactly. I wish I could banish the side effects. I can tell you that I love you and I think of you every day. I think you’re doing a great job fighting this f*#cker. I hope that you will find distraction easier than you have recently. Negative thoughts are natural (see above story), but should not be indulged. They are just thoughts and not real. What is real is that you are here and still fighting and moving forward and you will reach that finish line.

Sending you tons of love and gentle hugs,

Jess

That's What Faith Can Do!

2010-01-18T16:43:00.000-08:00

So I was just introduced to a song that has such beautiful and strong lyrics that I think are good reminders for us all right about now. The song is called, "That's What Faith Can Do!", from a band named Kutless. Alex please remember that we all have faith in you and we fight with you.

That's What Faith Can Do ~Kutless

Everybody falls sometimes

Gotta find the strength to rise

From the ashes and make a new beginning

Anyone can feel the ache

You think its more than you can take

But you are stronger, stronger than you know

Don't you give up now

The sun will soon be shining

You gotta face the clouds

To find the silver lining

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

And I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

It doesn't matter what you've heard

Impossible is not a word

It's just a reason for someone not to try

Everybody's scared to death

When they decide to take that step

Out on the water

It'll be alright

Life is so much more

Than what your eyes are seeing

You will find your way

If you keep believing

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

And I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

Overcome the odds

You do have a chance(That's what faith can do)

When the world says you can't

It'll tell you that you can!

I've seen dreams that move the mountains

Hope that doesn't ever end

Even when the sky is falling

And I've seen miracles just happen

Silent prayers get answered

Broken hearts become brand new

That's what faith can do

That's what faith can do!

Even if you fall sometimes

You will have the strength to rise

2010-01-18T04:46:00.000-08:00

Dear Alex,

Had I been able to answer, I would have asked for the bad news first. I always want to know what is weighing you down, and what you wrestle against- sooner...It doesn't take away from your good time with your family and Nonna, which your pictures clearly depict. I just feel closer to you, knowing that you are not holding anything back.

I know that if you were here, I'd just hug you, my embattled friend. I don't have any great words to say to keep you lifted, and when we get punched, I think it makes sense to cry. So, if I was there, I'd cry with you. I do cry with you....

But, the truth is that you are an incredible force, and you will continue the fight. I just wish that you could have some relief.

Please don't allow those negative thoughts to prevail in your brain. They are toxic and just hurtful. Please continue to look forward toward health and recovery. You will win this battle, this race. We will always be by your side.

All my love to you, and a big,
long, crushing virtual hug.
-Julie

Athena

2010-01-18T03:08:00.001-08:00

Hi Panda,

It was nice seeing all the photos and reading that you had a good time in Rome. I also heard from my parents how cute James was and how much they all loved him--the pictures you posted definitely show that too. It was NOT nice reading the news of your scan, but your poem and your attitude gave me great comfort. I loved to see that your spirit, although attacked again and again, stands strong and determined. You are a great warrior. Like Athena, the Greek goddess of wisdom and war.

Hugs hugs hugs hugs.

Hello My Person!!

2010-01-17T12:03:00.000-08:00

You keep doing the best you can and beat this!!!
You are strong and have overcome so much in the past year.
I can't even begin to imagine how you feel. I think you know me pretty well and I'd be doing the same thing you are and having all the same thoughts and no matter what anyone says I would be in my own misery!!
But that's me! You on the other hand can turn anything into a challenge and WILL defeat this crap!! We are all behind you and will pray like never before!! Keep that chin up and only positive thoughts!!!
I'm so glad you had the time with your grandmother. She looks great! Wow 102 she's amazing! You take what ever it is she's done and do that and more!
Your poem is wonderful and I'm sure it helped putting those thoughts in writing. Thank you for sharing it.
We all miss you and talk about you every day! Mark was over last night and sends his best to you and Julian.
Take good care of yourself and keep the chin up!
I love you!!!
Eve

Here I am.

2010-01-17T07:27:00.000-08:00

Dear All,

You know when someone asks you, "Do you want the good news or the bad news first?" and you try to determine which is the best option? Well, I sit here typing, posing you that same question, and wondering what your response would be.

As your replies cannot reach me, I choose to start with the good. I had a wonderful trip to Rome. While I found the traveling to be very tiring, it was worth every bit of fatigue. As these pictures show (and more will follow), my grandmother was in wonderful form. She and James bonded beautifully... on the first day, he was bringing her candy by the handfuls... by the third day, he was blowing her kisses and gently caressing her face. She engaged with him as only Nonna can, combining a mixture of playfulness, affection, praise and discipline.

I had my alone time with Nonna, and also soaked in her presence as we all sat around chatting to her. Admittedly, I found it hard to "pretend" what my life had been like over the past year since I had last seen her. She immediately commented on my short hair ("Why did you cut it? You look like a little boy"...) and questioned me about my work, my work being the reason I have given her for why I have not visited her before now. There were so many things I wanted to tell her, there were so many times when I had to get up and take a moment as I fought back tears and fought the urge to say, "Nonna, I am having such a hard time". Instead, I had quiet conversations with her in my head, as I held her hand, and silently gave thanks for being able to be with her. And I reminded myself that bringing James to see her was the biggest gift I could give her and give myself, and so we focused on him, and he gave us plenty of joy in return.

In fact, James thrived in his three days there. Not only did he travel well, but he had fun exploring and taking in all of the novelty. You could tell how much he simply enjoyed having more space to run around in! Also, while there, he learned to go up and down stairs on his own - wonderful to watch fear turn into caution turn into calculated confidence. He perfected a backwards crawl as he went down a step that divided two sections of the livingroom, the cute thing being that he would start the backwards crawl very far from the step itself, as if to say, "Just in case, I had better be prepared..."! He discovered himself in the mirror in the hall, smiling at himself, and giving himself kisses. We had some relatives come for lunch on Sunday, and he loved the attention ( and wonderful gifts - hand-knitted sweaters, toys) and the interaction. I was so proud to see how sociable he was - nothing fased him, in fact, he was so curious. He and my Aunt Paola ("Zia Paola") have a special connection, and I loved to see him with her, his eyes wide and happy as he listened to her tone and to the sing-song quality of her voice as she spoke at length to him and showered him in affection. As the photos show, James exhausted himself in all of the excitement, falling soundly asleep amidst the commotion of the Italian family together. I have so many great mental snapshots of him with everyone.

So, yes, the trip was great and worth it on so many levels. So saying goodbye was heart breaking as always, and I simply dream of the next visit, ferverently hoping that it will be soon. Nonna turned 102 years old today,

And the bad news....? Well, I returned to London to have my scans, and the results were disappointing to say the least. Everything has remained stable with the exception of my liver where ther cancer has progressed. Old lesions have grown bigger and they identified some new spots. I was crushed by the news. Simply crushed. Dr. Plowman then presented his next battle plan - a change in chemo treatment (Again! This makes it the fourth chemo protocol....), which would entail a more aggressive cocktail than what I have been on for the past 6 months. With that, I should expect the usual side-effects (pain, nausea, fatigue, hair-loss) but he could not say to what degree. I will get chemo every two to three weeks (to be determined), with new scans after three cycles.

So, tomorrow I start what will be Round #20. I am afraid of and dread tomorrow, for what it is and for what it represents. I have been an emotional mess since the news of the scans, in tears all the time, and having frequent little anxiety attacks which leave me trying to catch my breath. I have had to actively ward off negative thought after negative thought (i.e., wondering how much time I have left, images of my "last moments", visions of how I would say goodbye to James) - it has been torturous and gut wrenching, as you can only imagine. And then I fight with all my might, every ounce of my willpower, to shut those down and focus on me being healthy and well and beating this f&*ker. It is exhausting to fight off those thoughts but I do, as best as I can, so as to save my own sanity. I have never been so scared in my life - it is indescribable.

I look at the photos above and I would never say that I look like someone who has had 19 cycles of chemo. Like someone who has advanced cancer. So, I tell myself, look at the healthy you. Look at the strong you. Look at the stubborn you. Look at the fighter you. I have begun to say affirmations out loud, particularly in moments when my negative thoughts pummel away at me, as a way of refocusing. Also, I can so clearly picture all of the things that I want to do, short and long term, and I tell myself that I will do them. I have projects to develop, places to visit, people to see, love to give, change to initiate. I often envision myself several years from now, and those images feel tangible not fabricated. I talk to my liver, I talk to my body. And I hold onto hope, even when all I can do is sob, because there has to be more to my life than this. I reject any other option than a return to health.

My family has been amazing over the past few days, giving my boosters and peptalks and every kind of battle plan under the sun. New year, new tack, new weapons... but same projected outcome of a sweet-tasting, tear-jerking, personal victory at the end of all of this. You can do this, Danda, you can do this. Believe. 2010 is your year. It is the beginning of your decade. Keep that stride, get those knees up, move those arms... run, Danda, run... you are in this race until you win it.

I leave you with two pieces of writing: one Chiara's and one mine. Chiara's is a card that she gave me yesterday, in which she wrote me a note. The other is one of the many poems that I have been writing over the past year, an exercise which has given me release and comfort. I share both of these pieces of writing because I feel that they really reflect this stage of my marathon. In them, I see strength and belief and the positive energy that continues to propel me forward towards the day when I will cross the finish line a winner.

[Front of Card] "Dogs are the leaders of the planet. If you saw two living creatures, one of them does a poo and the other carries it for him, who would you think is in charge?" [Chiara's note inside the card] "Just to get through the point that although it may look like something or someone has the upper hand, the reality can be quite different. All about perspective. No matter what the cancer does, YOU ARE IN CHARGE."

Taking the Blow

You knock me down
Again.
And again.
Insensitive, invasive.
You try to steal ground,
Quietly wanting to own what is mine.
My mind spins from your slap,
My heart hurts from your punch,
My body tires from your hit.
Yes, I cry, because you sadden me.
You anger me.
You frustrate me.
You threaten me.
But I am so much more powerful than you.
I am tougher.
I own endurance, I own perseverance.
I own this body.
I own this fight.
You picked the wrong battle.
You underestimated me.
I shall clear you.
And never look back.

Hugs to all.

mutual bolstering

2010-01-15T17:52:00.000-08:00

Hi, Alex -
I miss you I miss you I miss you. I so very much want to be with you. Not only doI want to bolster you in a ny little way I can with love, hugs, laughter, shared tears, shared appreciation of James, love of tea and People magazine...but I could use some of your bolstering as well. Things have been a little intense around here lately, and I crave to snuggle into your friendship. Why is that darn pond so freakin' big???? Ugh.
I hope your travels went smoothly. I know you will write about it when you can, and when you are ready. in the meantime, as always, I am thinking about you every day, and sending lots of love. - Lindsay

Hope!

2010-01-14T10:03:00.000-08:00

Dearest Danda,

I am back on the blog after Christmas celebrations in Christmas Cove, wedding planning at Caneel Bay and Mom’s 70th birthday celebrated in style. The islands welcomed me home with open arms and Dad greeted me as we approached the runway. There was a small rainbow that appeared out of the ominous clouds over the hills of St. Thomas-it was undeniably Dad reminding me that he is still with us. There was also the frigate bird that circled Christmas Cove the morning that we sailed over to celebrate the day. Dad is ever present and I am slowly beginning to accept our loss and believe that he is in the heavens catching up with old friends free of pain and worry.

Ω I am leaving this little symbol in front of these words. I just hit the keyboard by accident and it came up on the screen. I think it is the symbol for pie, but I think it is also reminiscent of a horseshoe so I am keeping it because horseshoes are good luck! Sometimes there is a lot to be said for luck and hope.

My mother gave me a book after I saw her reading it, called Healing After Loss. It is by a woman who lost her daughter to an accident at an early age. She writes daily meditations on healing and grieving and I have found the book my touchstone since loosing Dad. She starts every meditation with a quote and then writes about the subject from her own experience. The words below comment on hope-I think that they can resonate with anyone who is going through a difficult time so I hope you can make use of it.

Hope is the thing with feather
That perches in the soul
And sings the tune without words
And never stops at all.

~Emily Dickinson

Sometimes we know as much by its absence as by its presence. When we’re depressed, hope seems almost unknowable, a total illusion. We feel inwardly flattened, unable to move, or as if we are just going through the motions. The song of hope of which the poet speaks of is muted. Yet the will of the spirit, as well as of the body, is for life, even for zestful life. Then something happens—a friend calls and we mobilize ourselves, making an effort to be useful, to ourselves or to someone else. The energy quickens. At least the moment has some meaning again and that persistent note of hope, without which we cannot live, starts thrumming in our minds once more.

~Martha Whitmore Hickman

I hope every day for big things and small things knowing that some of my thoughts will play out with silver linings and some will not. But there is always tomorrow. Today I hope that your visit to Rome was fulfilling and that being with Nonna gave you strength and hope-she is a rarity!

Much Love,
Lex

"Impossible" Dream

2010-01-12T03:51:00.001-08:00

Hi Danda,

I hope the trip to Italy went marvelously well, and that you´re back safe and sound. Today on the BBC they mentioned the inspiring story of Geoff Holt, a quadriplegic who has single-handedly crossed the Atlantic onboard a catamaran called "Impossible Dream". Geoff has just arrived to his final destination: the British Virgin Islands, the place where he had the accident which left him paralyzed from the torso down 25 years ago. Geoff is also the first disabled person to have sailed around the UK solo! Thought his video may be as inspiring to you and our fellow bloggers as it has been for me!

http://geoffholt.com/videos

And always on the sailing theme...yesterday, while I was doing some overdue tidying up, I came across an Ellen MacArthur quote which exemplifies her courage and audacity in beating the world record as the fastest solo circumnavigation of the globe in 2005:

No one knows what he can do until he tries

As is our confidence, so is our capacity

If it is to be, it is up to me

Nothing is impossible to a willing heart

Winners never quit, quitters never win

Make or find a way.

Bacione! Sally

IS THIS JAMES?

2010-01-10T09:39:00.000-08:00

Found this card the other day in a box of oddments and thought it looked just like James! Perhaps, he will have a pooch one of these days that resembles this terrier mix. The two of them would make a mighty amount of mischief if given the chance! I will save the original and bring it with me when I next come to London or when you come here for the wedding you can collect it. See if you can borrow Max the next time you go to Seven Oaks and take a comparison shot for posterity. Hugs from the very warm and sunny Caribbean. I almost hate to rub it in! LSC

Welcome 2010

2010-01-10T08:44:00.000-08:00

Hello Alex,

I have stored some extra hugs and positive energy to send your way as we begin this new year. I look forward to hearing about your trip to Italy. There is something amazing about seeing the world through a child's eyes - and just think about all that James will see and feel.

You are in my thoughts all the time.
Love,
Lisa

Hello!!!

2010-01-07T18:34:00.000-08:00

Hello to all and a very Happy New Year!!

Alex, the pictures are too precious!!

I just think that James is the cutest thing ever.

He needs to model for some childrens clothing magazine or something!

I have to admit some days I go on the blog, read a bit (everything you write of course) and look at all the pictures and read about them. You are truly blessed to have such wonderful friends and family in your life and this WILLLLL get you to a better 2010!!

Love to you each and every day!!

Eve

Tiredness and Triumphs.

2010-01-05T13:31:00.000-08:00

Dear All,

With two feet firmly in 2010, I have felt the momentum of the New Year. December was a rough month for me, physically and emotionally. I had too many moments of questioning, "Can I do this?", too many instances of feeling depletion at all levels. And with that came tremendous sadness, a lot of self-pity, and a feeling of "losing hold" on resolve... I find it hard to describe the "tiredness" I feel from all of this, and as I shut the door on 2009, I felt deeply, deeply tired.

But as with all marathons, you take things one step at a time, you let yourself be carried by the cheers of the crowd when your own voice weakens, you keep your eye on the finish line and trust that your legs will hold you up... and you pat yourself on the back for still being in the race in the first place. For hanging on in there. For working through the "tiredness". For not giving up.

And so I started 2010 acknowledging the "tiredness", but then stepping things up a notch. I have increased my supplements, been even more diligent about my diet, taken even greater care of my body. I have recreated my visualisations, dedicated more time to listening to my body, made more mental notes of what is important to me. I have allowed myself to plan. I have re-owned belief. I have let myself cry knowing that it's okay to do so today, tomorrow, the next day... because that is how I feel in the moment, and then it too shall pass. And I have told myself, a hundred times a day, "You ARE going to do this".

And as always, I have immersed myself in James. My family and I have spent some lovely, happy days with him. Long walks in the park, cosy afternoons at home. Time together. He changes every day and lately he has been going through a growth spurt - ravenous appetite, wonderful playfulness, great curiosity... he is a boy with a mission, seeking novelty and adventure and interaction in all that surrounds him. He pushes all boundaries and still manages to get a grin out of you as you struggle to keep a straight face. He has a girlfriend! (see photos). He is my dancer, my playmate, my mechanical engineer (see photos), my joy. He is a million and one reasons why 2010 has started off on a wonderful note.

And, to end this entry on a great note, I am booked on a flight to Rome this Friday, to see my grandmother and some of my Italian relatives. A short, three-night trip sandwiched in between my treatments, but precious nonetheless. About to turn 102 years of age, my grandmother is a remarkable woman with the biggest of hearts, and I have missed seeing her so badly since I was diagnosed. I have missed sharing James with her. She still has never been told that I am sick (and never will be), and while I have longed to hear her wisdom and have her comfort guide me through this marathon, I am glad that she has been protected from worry. So while we will not talk of my situation, I will instead soak up the energy and warmth of her presence. For, in her eyes, I am healthy and whole. And maybe, just maybe, that vision of hers will become my own again soon. And tiredness will make way for triumph.

Hugs to all.

Wishing you Love and Renewal!

2010-01-05T06:51:00.000-08:00

Danda dear, you may be feeling quite low as I write and this time it´s me who needs to take a deep breath as I learn to accept that this is what you need to go through in order to reach the ultimate healing that awaits you. I attach this funny photo from the Balearic island of Formentera (one of my favourite Mediterranean islands for having no high-rise buildings, surpringly well-protected dune systems, and breathtaking crystal clear waters!). As Formentera has been literally invaded by Italians, the Italian title of "Love and Iodine" on this beach "chiringuito" is not surprising. Love and Iodine? I find it great! Two key ingredients! Love, as has already been well exposed in this blog by various of your troops, has been an inseparable companion this past year permeating this roller-coaster ride of yours. No shortage of that, for sure! And iodine is one of the healing components of the sea. Iodine is therefore an analogy for the sea and all its physical, emotional and spiritual healing properties.

To me there is nothing as powerful, immense, vast, and healing as the sea. It is a vivid reflection of the wonders of this earth and of the powers of our own human experiences. At times, the sea has reminded me to be patient like the gentle waves washing up on a beach, one after the other, repeatedly, endlessly, soothingly. At others, it has whispered to my ear through the deafening sounds of a storm and its turbulent waters. It has whispered that it´s ok to bring out my most fiery emotions, to spill them out as the sea does for a few hours or days before it returns to it´s peaceful tranquility. But whether in turmoil or at peace, the sea is always real, true, faithful to Life in all its glory and its challenges. It never loses the connection with its inner essence. Deep below the surface the sea remains unruffled, quiet, at peace. No storm on the surface or human selfishness polluting and overfishing its waters can disturb that peaceful core. To me, Danda, you are similar to the sea. I have laughed, cried, admired, worried, believed, and risen up reading your blog entries. And each time I´ve read your lines, seen your beautiful self in photos or in person, and heard your gentle voice, I have been left in awe by your positivity, your inner strength, your capacity to keep smiling that generous smile we all love so much.

So now that the curtain has dawned on 2009, let us welcome 2010 wishing for, working towards, and believing in...Love and Iodine (in all its healing-related meanings)! I would like to finish off with a reference to that advice on not getting your hopes up. I admit that (as a very transparent dreamer...je, je!) I´ve been told the same more than once too. When I was younger I would get defensive or feel saddened by the words. Now with the benefit of hindsight and having lived the realization of various beautiful dreams in my life (thanks to perseverance, trust and a good dose of "testardagine"/"testarudez"/stubbornness!), I simply answer with my own variation of that famous quote:

Shoot for the moon, you might fall on a star!

No matter what, Danda, it´s a NEW YEAR and the fruit-picking time may be closer than you think! You have sewn sooooo many seeds in 2009, and you never know when they will start sprouting!

Love, Sally

time to scheme, or still a dream?

2010-01-04T18:12:00.000-08:00

Hello, my dear -
One of the things that 2010 has brought so far for me is an intensified wish to come and visit you. Hmmm....
Love you - Lindsay

All those hopes multiplied a thousands times over!

2010-01-03T06:25:00.000-08:00

Dear Danda,
2010-- a new beginning with all sorts of possibilities!!! Just want you to know that we are praying that your stars are aligned in the heavens for good news, improved prognoses, less pain, favorable blood counts, healthy bones and tissues, and happier days with your dearest James, the rest of your family, and your legions of friends! With magic wands waving, we Griffith Girls salute you and welcome this watershed year with you.

2010, here I come, full of hope.

2009-12-31T08:43:00.000-08:00

Dear All,

A short note, as I am feeling the full effects of chemo, having only been discharged from the hospital a few hours ago. But I just wanted to wish you all the Happiest of New Years, on this eve of saying goodbye to 2009 and welcoming in 2010.

Growing up, I was always told, "Don't get your hopes up", as I would characteristically always think of the good or expect good of others, strive for the best or expect that effort would be reciprocated, and would often get disappointed. I would find that I had asked for too much, or had set my expectations too high.

I am all grown up now, and still haven't changed. On the eve of 2010, true to form, I continue to keep my hopes way up. In my opinion, there is no such thing as hoping too hard. I continue to set my expectations high, for I still believe that anything and everything is possible. My emotions are raw right now and I remain frequently overwhelmed by the strength and resilience that this marathon asks of me. But I see 2010 as the year where that finish line awaits, and where I will breathe that sigh of relief to have crossed it, at last, to the sound of your cheers. Yes, my hopes are up, and I am keeping them there.

I have attached a picture of James taken this Christmas. He is my biggest hope. And as I continue to seek silver linings, hidden as they may be in the darkest of times, seeing him grow up and thrive and be the happiest of little boys, has been the biggest gift that 2009 has given me.

Happy New Year, my wonderful troops. Hugs, huge huge hugs, to all.

We're pulling out all the stops here ....

2009-12-29T16:00:00.000-08:00

Dear Alessandra,

Just a quick note to keep your spirits up on the eve of the next round, and last round of chemo this year. We're with you, girl, and there's a brand new decade just over the top of this hill, full of wonderful days for you and your men. Love and xxxx

sending love

2009-12-28T19:44:00.000-08:00

Hi, Alex -
I just wanted to say hello and let you know I am thinking of you, as always. We had a lovely Christmas in snowy Vermont, and we're making the most of the kids' vacation. Lots of skiing, cross-country skiing, sledding, and potluck dinners with saunas and hot tubs with friends in the evenings. Around here, winter has the opposite effect of hibernation -- it's the most social time of the year! I wish I could fly you out here to share in the festivities and show you off to my friends, here. We head to Maine with my family for a few days tomorrow, returning in time for the weekend fun around here. I'll try to get some photos of the girls skiing to post, soon. I hope you are finding some moments of winter peace, and that you are wrapped in the love of family and friends. More soon. I love you and I miss you - Lindsay