Pink Glove Dance

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

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

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!

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

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

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!

"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.

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

Thank you for the update

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.

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...

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

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!

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

HAPPY BIRTHDAY!!!!

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!!!

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

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!

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

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.

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!

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!