Beneath the Battle are Blessings.

Dear All,

I have just come back from having day surgery on my foot. Had a mole removed that has been looking increasingly ominous, and five stitches later, I am here hobbling around. The doctor warned me that the local anaesthetic would be painful on that area, but I joked back that I has been prodded and poked so many times over the past 7 months, that needles and I were now joined at the hip, so go right ahead.... but my God, it was horrendous!! He apologised, saying "I warned you!", as I tried to catch my breath and not to let out a string of expletives... Honestly, as I lay there on the table, hearing him say, "Scalpel please", I asked myself what the hell had happened to me this year - how had my body taken this dramatic turn from healthy to poorly? Does one ever get to the point when one becomes numb to all the procedures, doctors, needles, medications? I think not. I think you just become more "aware" - about life, about health, about being grateful for the simplest of things. A sensitivity that can easily bring you to tears when it all feels like "too much", and that can also bring you such happiness as you appreciate living at a whole different level. Health will be mine again, I tell myself, just be patient and believe. And the words "medical" and "clinical" will one day soon become shadows behind other more prominent words in my life: ""beautiful", "thankful", "plentiful", "peaceful", "joyful"....

This week has been good overall. The relief of the scan results has been so tangible, and as the news sunk in, we have all been able to breathe deeper breaths. When I feel any pain, I am better able to attach to that a positive interpretation ("The cancer is dying") than a negative response ("Is that the cancer growing?"). That being said, I now push even harder for maintaining that momentum, and have been focusing all the more in continuing to beat the f#*ker through diet and visualisations and seeking that inner calm. The chemo side effects have been heavier this cycle, possibly the cumulative effects beginning to be more present. But I still managed to meet with parents and children this week at the office, to write reports, to go out for dinner (the first time since February!), and to spend time with James whenever I could.

Speaking of whom, how is it possible that he will be turning one in a couple of weeks?! My baby is no longer a baby - he's a strong, tall, talkative, active, eight-toothed bundle of energy and joy. He amazes me. Lately, he and I have gone out for early morning walks in Holland Park while the world is still asleep - lovely quiet and fresh starts to our day, where all seems possible. My mother has joined us, combining strolling with her commendable runs. James squeals at her in awe, while waving with glee at the dogs that pass us, and looking up at me with rosy cheeks and the biggest of grins. I treasure these moments, images stored in my mind of how blessed I am.

And in mentioning blessings... I wanted to thank you all for all your posts and emails and messages this past week, as you shared in my good news and cheered me on to keep on going. I couldn't do this without your support, and feel so incredibly lucky to have so much love and friendship in my life. The biggest of hugs to all.

EVVIVA!!!!!!

Wow Danda!  The fight continues but a huuuuge milestone has been achieved!!!!  I´m sooooooo happy and Mum had tears in her eyes as she listened to your good news!!!!  I´ve been traveling a lot lately so a bit out of touch, so sorry if I haven´t written.  I did think of you so much when in San Sebastian at the end of June, and as I sat quietly contemplating the sea, perched on a beautiful hill surrounded by pure nature, I took these pictures for you.  Hope you like them (I know Vicky will! :))  Anyhow, as I told your Mum....I´m coming to London...today!!!  I hope I can come visit again and see your beautiful smile and how big James has become!  Plus tell your Mum she can book her personalized massage...oil and all!

Bacioni querida!!!!  E ancora, bravissima!!!

Love, Sally

Still Smiling

Hello Alex,

I have returned to your last post again and again. I am still smiling! You have waited for many test results in your life, but I have no doubt that these results were by far better than all those that came before! I also have no doubt that you have never worked harder in your life.

Tonight, we set up a tea party in your honor to celebrate the progress and to acknowledge the journey. Olivia and Grace poured the tea (water with lemon) and made the blueberry and pineapple cakes (you never know what 2 year olds will come up with). We did our toast and sent a big hug your way! I guess it is time to start introducing the spinach, garlic, apple, pepper, broccoli drink, but for tonight we went with the cake! Cheers my friend..

Lots of Love
Lisa

You Rock!!

Hello My Friend,
Absolutely the best news in the whole wide world!!! Gotta say better than the Red Sox news! We were ahead of New York last week by 2 games and are now behind them by three games. (just thought you'd want to hear that)
You are missing all the bleepety bleeps from Stephen! I think I just made that word up.
Anyway back to the best news in the whole wide world!!! I knew you'd get here and I know you'll keep going on the right path and be putting this behind you sooner than you think. You Are A Rock Star!!! Gosh, it's hard to find what to say. I hope your feeling well after Monday's round and keep feeling better and better. I can't wait to see you and meet James. It's always great chatting with Julian on instant messenger, we laugh about the dumbest things! he makes my day!!
Not much going on here the usual crap and to top it off crappy weather for a New England Summer. Your not missing a thing!
That's all I have to say, I'm sending you all my love and all the love from the whole gang along with all the prayers in the whole wide world!! I have no Idea why I keep saying that but I like it.
Love you to death (as Stephen says) talk to you soon!!!
Your person Eve!!!

Better late than never, I hope.

Dear Danda,

Lisa sent me in invitation to join this blog months ago, but I ran into multiple problems trying to join and told myself I would figure it out later. That "later" turned out to be two days ago and still I ran into problems. I emailed Alexis who immediately responded, and finally after several tries, I think I have made it to the blog. Naturally, I had to read all the blogs before I posted one, and the first was yours with the superlative news about your last report, That is the best news of all. I am so happy for you and although I always knew you were too wonderful and beautiful a person to not beat this thing, it was a great relief to read your positive report. I will now be a frequent member of your blog, and expect the reports to only get better and better.

One thing your blog has done for me is to catch me up with one of the families I love more than any on this planet. Alex's news of an engagement and wedding to be, the frequent post's by Lisa (LSC) filled with her usual extraordinary humor and upbeat comments, Alexis's beautiful, thoughtful and abundant postings, the fun news about Yacht Alessandra and Chris's bringing her to St. T, pictures of you and your beautiful James (is there one of Julian I missed), and so much more that made me realize why I love you all so damn much, as if I really needed any more reasons.

Keep those great reports coming! I hope to have something more intelligent to say next time.

Love,

Bill

Out of blog reach, but not out of mind

Hi Panda,

This morning I'm off to a conference, I will be off the blog for a few days. I won't have the chance to check the updates regularly. It is true that I usually use the blog as an excuse to think of you and send you my best good vibes, but I don't really need the blog for that. I'll think of you anyway--and I'll have a lot to read when I'm back :)

I assure you, I will make sure not to think of you while giving my talk, or it will never end. I'm allotted 15 minutes and my talk is 17 so far... I've been cutting slides all day yesterday and tried to rephrase everything so that it would take less time and still be clear. I hope I won't end up talking at light speed or no one will understand anything! I still have a day to shorten my slides/text.

I heard your immune system is in good shape this time. Is it correct? I'm keeping my finger crossed here.

Hugs!

THE ALESSANDRA'S WHEREABOUTS

Somewhere on a turquoise sea, white-capped, your namesake sails along under sunny skies. She has made her way down the Bahamian/Exuma chain to Georgetown, Great Exuma and beyond. Over the last week she has dropped anchor at Little Whale Cay (check it out on line!), Warderick Wells Cay, Shroud Island and a host of other sandy exotics. On Staniel Cay, the ship's complement dove into the cave that was the scene in a James Bond movie. I suspect the male contingent thought of themselves as adventurers equal to Ian Fleming's hero (in their dreams!) When under sail, they used the automatic pilot as they performed various tasks and tweaks to make the boat better/easier/more streamlined. All aboard have salt water in their veins with the exception of Jessica who is the quickest study I have ever met. From Sandusky, Ohio to the high seas is a remarkable journey. Her pluck is laudable! The ALESSANDRA is now on her way to Turks and Caicos to pick up two more crew for the final push to St. Thomas. ETA is on or about August 7th. We scrutinize the Atlantic looking for anything that resembles a possible storm. Finding a clear window of opportunity is paramount as there is no good place to head for cover when making the run from Grand Turk to St. Thomas. I wish we had a good picture of your namesake but internet is not available on this particular "mega yacht". I will keep you posted as I hear something from the your namesake. Safe passage.

OOPS - GLITCH

When I printed the poem on the blog, the spacing did not come out as I set it up. Why? S---! O well.

MORNING

Sunday morning, which means I head for church not so much for the gathering of religious edification but for the sense of community and caring and sharing which is palpable. The pews are so uncomfortable that they prick your conscience and force you to listen and reflect. Inside the order of today's service was a poem to be read aloud by the congregation. I pass it along to you as I think it is quite lovely, and I like the way it is spaced. Space does, I feel, add so much to the meaning. Ms. Oliver is a well-known, current American poet whose images are rooted in the natural world. My kind of gal. I pass it along for the keeping or the deleting.

MORNING POEM

Every morning
the world
is created.
Under the orange

sticks of the sun
the heaped
ashes of the night
turn into leaves again

and fasten themselves to the high branches ---
and the ponds appear
like black cloth
on which are painted islands

of summer lilies.
If it is your nature
to be happy
You will swim away along the soft trails

for hours, your imagination
alighting everywhere.
And if your spirit
carries within it

the thorn
that is heavier than lead ---
if it's all you can do
to keep on trudging ---

there is still
somewhere deep within you
a beast shouting that the earth
is exactly what it wanted ---

each pond with its blazing lilies
is a prayer heard and answered
lavishly,
every morning,

whether or not
ou have ever dared to be happy,
whether or not
you have ever dared to pray.

Mary Oliver in Dream Work

YAY

Dear Alex,

We are so thrilled to hear your news!! Congratulations!!! Like Lance, your determination and strength have prevailed and I do believe you have both earned a podium position :)

Congratulations on the fabulous news. Team Priorelli is a large and powerful team, and the management has taken us all the way to the top. I knew there was no way we could lose :) Although this Tour is over, you, Lance, and the Team will continue this strict training regimen and I'm sure next year we will blow them away completely.....(but, in the meantime, we will also have lots of successes and health in our other races)...

I'll end my silly post with my wish that you, Lance and the Team get some much deserved rest. You've worked tremendously hard, and you must be exhausted. Much love and many hugs to you.

-Julie

AWESOME!

Dearest Danda
I salute you. I stand in awe of you. I am blessed to witness your journey, for in doing so I learn, first-hand, about sheer willpower coupled with the wonders of modern and ancient medicines, the healing balm of prayer from many quarters, the natural bounty and curative powers of fruit and fiber, the warmth and constancy of family and the miraculous gift of love.

Ghandi said that "strength comes not from physical capacity. It comes from indomitable will". You personify the quote. Add to it one from Bruce Lee, not such a quiet, passive individual, who states that "the successful warrior is the average man with laser-like focus". Keep focusing, keep willing, keep praying, keep eating, keep loving. Your troops will do the same on your behalf. LSC

YES! YES! YES!

"Oh frabjous day! Callooh! Callay!"
No time to say more, as babies and toddlers are here for the weekend. Your news has positively sent me over the top, Danda. We are all exultant and so so happy for you, Julian, James, Chiara, Vicki, Marco et al. Hugs all around.

more good tears

I had no idea the words "full and prolonged remission" could make me sob!!!!!
:-) - Lindsay

Making James Proud!

I too am read this morning's post with tears in my eyes. Tears of happiness that you are doing it, you are fighting this f--ker! Reading your words stating your "skeleton is clear" and that there is only a small spot on your liver made my heart jump. I had to go back and read it again and again to make sure it wasn't my mind seeing what it wanted to see. But it is real sweetie, it is Real! You are doing it!

Each time I read one of these amazing posts, I think about James. He is going to grow up to be such an amazing man, because of you! You are setting such an amazing example of strength, perseverance, and love of life that he will follow too. He must be so proud of his mama, I know I am.

I love you my friend and wish I was there to hug you, hug you, hug you, laugh, smile, and giggle at the news. Have a great weekend, you deserve it.

Mary

SHRINKAGES!

Panda, this really is amazing! Good news on all fronts and from all points of view! This chemo may be a bitch, but it really suits you. I'm sure you now feel ready to endure all the sores, burns, sad moods, anything that the three new cycles will bring. You'll face them with a completely new spirit. Shrinkages! This is a wonderful word--I'm not even sure it's English, but it doesn't matter, it's such a meaningful and happy word to me anyway! Thank you for posting the entire story and let us feel the full extent of your happiness. I'm right behind you with the biggest smile on my face. Kudos, Priorelli!

GREAT news!

Dear Alessandra,

The sweetest news! You are truly amazing in your fight, determination and resolve. I am so happy and relieved to hear the news that you are doing well and making progress. As many have pointed out over the months, you are a fighter and while the war is not over, you are moving toward a "full and prolonged remission!" Sweet words to you, but also to all of us who love you and think and pray for you everyday. Thanks for sharing your great news with all of us. Enjoy the comfort of your progress this weekend, and give cutie James an extra big kiss (and Julian, too, of course!).

Love,
Karen (and family)

Saturday morning, Living Strong.

Dear All,

Saturday morning is slowly unfolding, after having had a cuddle session with James in bed, fed him papaya and porridge, played and played, and tucked him back into his cot for his morning nap. My own breakfast eaten, green tea brewed, and here I am.

About yesterday.... Julian and I headed to Cromwell hospital to meet Dr. Plowman for our 4pm appointment. We were in positive spirits but understandably very nervous - the anticipation of these meetings can be overwhelming to say the least. As we then sat in the waiting room, Dr. Plowman walked through, waved at us, and said, "I'll be right with you". My heart was pounding, and Julian turned to me and commented, "Is it only me, or has your heart rate also hit 200 beats/minute like mine?!?" And then we heard our name, and it was our turn... I walked into Dr. Plowman's consultation room, sat in my usual chair, with Julian next to me squeezing my hand, and heard the sweetest of words come out of Dr. Plowman's mouth as he smiled at us both and stated, "It's good news". You can imagine what a moment like that feels like... a million thoughts, a million feelings, a million silent thank you's....

Dr. Plowman took the reins in slowly walking us through the CT scan results. Basically, in contrast to the past scans where we had hit a standstill and, in some areas, the tumours had grown, these new results painted a very different picture. Everything, everything, everything had shrunk, and in some areas the improvement was termed "marked", for having just had three sessions of this new chemo regimen. My breast tumour was significantly reduced, and my lymph node (which had in the past doubled in size) had done a complete about turn and was confirmed to be significantly smaller. My liver too has shown encouraging improvement, which was such a relief to me. Dr. Plowman pulled up the picture of the scan on the computer, and at first I panicked - as a rule, I don't look at any scans, nor do I read any of the reports, because they make me anxious and I tend to read into any negative piece, which is simply conterproductive. But there it was, the picture of my liver on the screen. The first thing I saw was a huge dark black patch, but Dr. Plowman quickly jumped in to say, "By the way, that is your gall bladder, not a tumour, so don't worry!" (Need I say - PHEW!??!!....) So, there it was, my liver in full view, and Dr. Plowman then shared, "See, if you look at it this way, it looks perfectly normal, but then if I turn the image around a little, do you see that faint little patch of shadow... well, that's what's left of the cancer, and that's what we still need to target". It was there but it was small, in the context of this big image - I had imagined an organ covered in black marks, looking "sickly", but instead there it was - a little shadow on a large healthy organ.

Dr. Plowman then turned to my bone scan, and I turned away from the screen - I just wanted to listen. One image was enough for me to brave! Anyway, he said that my skeleton was clear, aside from some enhancement still in the sternum area, which he questioned. Healing bone can present on a scan similarly to a cancerous area, and he felt that the time between scans was too short to affirm one or the other. But, he leaned on the side of the former - he feels that I am healing nicely, for I am no longer tender in that area at all. Two months ago, hugging me would be painful - any pressure on that area would make me wince. Now, I can thump on my chest or press down hard and it feels fine. So, overall, Dr. Plowman said he was very pleased, stating that for some reason, this chemo regimen seemed to suit me much better than the first, more aggressive one. We are moving in the right direction!

So, where do we go from here? We stay the course - three more cycles of this chemo regimen (3x3 weeks) and then more scans. Dr. Plowman said that if I continued in this mode, he anticipated that following those next scans, he would consider stopping the IV chemo, but keep me for a while longer on the oral chemo pills, to ensure a "full and prolonged remission".... I hung on those words. Full and prolonged remission... I hear "clearing" in those words, not "containing"... Come on, Priorelli, you can do this... maybe my wish of ending 2009 healthy again is within my reach after all...

So, I fight, fight, fight. Like never before, I am giving this fight 200%. Blood work tomorrow, and if all is well, cycle #4 of chemo begins on Monday. I have been referred to a specialist to look at a mole on my foot which may have to be removed (and to distinguish between any other potentially dubious spots versus simple chemo burn markings), so that doctor's appointment is scheduled for later this week. I will see anyone, do anything, bear anything, to get better.

The news is still sinking in. All I wanted to hear was "progress" and that's what I heard. Beautiful, sweet words. I am so relieved, so so relieved. The cancer is still there so I am still fighting, but I won this round and I am not stopping. My family and I have cried happy tears, we have danced a victory dance, and James has showered us all in endless kisses and smiles. What a day.

Lance Armstrong will be climbing the mountains again today in the final stages of the Tour - I continue to visualise that I am running alongside him, in strong determination, in silent understanding, in vocal encouragement, in shared objective... it's not about getting on the podium, it's about crossing that finish line.

Hugs to all.

... !!!!! .... :))))))

A-HA! Great news! I'm really happy too. All this hope and good vibes and your focused fight--and well, yes, the bothersome chemo too--are working! I'm looking forward to hearing the details! Enjoy your happy day! I will :)

Its FIESTA time!!!

I woke up this morning to the sounds of fireworks going off - today is the fiesta de Santiago, a big one in the Celtic region of Galicia and in some of the small villages in Madrid's northern sierra. And come to think of it, it is James's name day, your James and the two in my own family. So, what else could I wish for you and all our James's, the evidence that Mom/Danda/Alessandra is winning the battle is lighting up our lives!! lots of hugs and xxxx

What A Day!

Hello Alex,

Hopefully you are sound asleep right now and will wake up to that feeling one has after a great day or a fantastic event. I always love those mornings when I re-live the day before and smile, it makes it that much easier to get up and get moving! You are doing this!

So, I am supposed to be cleaning the house... A few quiet hours to get some chores done, but forget, there is just too much to celebrate!! Instead I will have a glass of wine and toast to you...

Sweet dreams my friend. We will all be joining you tomorrow with new energy. I love you

Lisa

AWESOME

Ahhhhhhh. Alex, I just cried happy tears as I read your post to Chris. My heart feels bigger and my body feels tingly, and I still feel like I want to cry more. I can't wait for the details. So much love - Lindsay

Good News!

Dear All,

The shortest of notes as I am exhausted, physically and emotionally, after the rollercoaster ride of today. But I wanted to let you all know that I received wonderfully good news this afternoon! I will write at greater length about it tomorrow, but the core of it is that EVERYTHING has responded very well to this new chemo regimen, with the remission being described as "marked improvement". The cancer is still there, but it is retreating, it is weakening, it is losing its ammunition.... I am over the moon. The afternoon's events still have to sink in. I am happily drained, if that makes sense. I came home to James smiling and blowing me kisses, as if he somehow knew the good news already.

So, I am falling into bed, so relieved, and ready to keep up the momentum of this fight, as the next round of chemo starts Monday all over again. Thank you all, from the bottom of my heart, for all your love and hugs and support and cheers and wishes and prayers which I felt both protect me and carry me through this day, not to mention this journey as a whole. Goodnight and I'll post again tomorrow!

I had to let it out!

Danda,

Woooooooooo Hoooooooooo!

Live Strong!

That is all I have to say, besides you are a winner in my book and I love you!

-Alexis

have the wish, I wish tonight

Katherine, I loved your lullaby. Danda, I think the picture of you and James is the most tender and beautiful image I have ever seen.

Speaking of verses....

Star light, star bright
The first star I see tonight.
I wish I may, I wish I might
have the wish, I wish tonight.

I remember how I use to kneel beside my bed as a very young child and since I was not well-versed in religious prayer, this was my version that I would say before I crawled in under the covers. The wishes would go on and on...wishing Gran would live until she was a million years old, that our family would be happy, that I would win my horse riding competition. You name it, I thought it and wished it.

More recently I've been wishing upon an eyelash every night when Jeff would pluck one from my cheek before bed. That wish was simple. I wanted him to marry me. That wish is coming true.

Tonight, before bed, I will look up to the heavens for the brightest star in the sky and have only one wish. It is sacred. I cannot tell it or it won't come true. But it will be out there in the universe being worked on for tomorrow!

Danda, your courage is palpable. You are my Lance. Driven and determined. With Julian at your side you will conquer this thing!

All my warmest wishes.
Alexis

Hi there!

Hi there,

I finally made it! It was really nice to see how everyone jumped in and posted a message for you as soon as you complained that we left you alone for five long days! This proves that despite the silence people are constantly thinking of you, check the blog as often as you do, and are ready to jump in as soon as you call for help. You do have nice troops after all.

I too was away for some time, but only away from writing. I followed your posts and checked the blog on those five quiet days (with nothing new to report!), hoping that you were not posting not because you were feeling too weak or your hands and feet were hurting too much, but because you too, like some of us, were out and about enjoying the summer with James and Julian. I was very sorry to hear that you had low days, they must have felt even worse considering that the blog was so quiet. Even if you know that many, many people think of you and send you good vibes every day, I'm sure it's difficult not to feel alone when we don't give sign of life. Luckily, as you said, those low days are over (and we have started writing again), and I hear you very combative again. Great!

I've been visualizing too, although nothing related to Lance Armstrong. His face pops up everywhere these days with the Tour de France and all. Nothing is left for the exercise of visualizing, and he is way too much in the present. I keep focusing on images of an older you and a grown-up James, side by side. He's so cute, in the latest posts, and he looks changed each time! It's still not so easy to imagine him as an adult, but I have no problem imagining you as an older woman. To tell you the truth age is really becoming on your face, with the dimples that remind me of how young you are at heart, and the lines that are clear evidence of what tremendous adventure you had to face and of how bravely you faced it. As you see, I am seriously working on it. And of course I am visualizing shrinkages, for which I pray every day and hope as strong as I can... about this, I will keep fingers crossed and eyes closed (it helps focusing) for your meeting tomorrow.

This summer is flowing slowly and very fast at the same time. It's already almost the end of July and it still feels April to me (except for the heat out there...). A lot of work the past two weeks, I changed supervisor and am now in a weird (but pleasant) transition phase. This of course doesn't promote taking time off and planning long vacations. However, I had two very normal and at the same time extraordinary weekends--simple, but like I could never have in the past ten years. On Friday last week my parents decided to improvise a visit. My Father called and said, "What about we come visit?", I said "Of course! When?" thinking they were planning ahead for the next week or so. He replied, "Even now". Then they decided they were too tired to travel that day and came the next. Great improvization! Ah, the magic of being on the same side of the pond... You know how that feels the first times. They came for two days, one of which we spent on a tour of the mountains. I didn't donwload the photos yet, but if I have a good one I'll show you. Last weekend it was our turn to go visit them. I think we all had a lot of fun just because we liked the fact that we could see each other every weekend.

Hugs hugs hugs to you.

I'm ready for the close up....

Dear All,

Home from the scans, which I refer to as my private photography sessions. The CT scan was first, and while last time I cried my way through it, this time I lay there and visualised like hell. The visualisation? Lance Armstrong was on his bike, pedaling away with strength and momentum (I have been following the Tour, and yes Alexis, it was amazing to see him take off from the group in a whirlwind of beautiful energy and determination yesterday...), and I was running alongside him, pounding the pavement in big strides. We shared this steady pace, and he kept shouting across to me, "You can do it, Priorelli! Come on!"... and so I ran, and ran, and ran, and ran... and as the technician told me over the microphone "Please hold your breath" while the machine took its pictures, Lance told me even louder, "Well done, Priorelli, you show them! You're ready for the close up", and we high fived, and I kept running, as he kept cycling next to me. Then it was over, and I left Radiology and headed off to the Nuclear Medicine department ("nuclear" medicine sounds so damn ominous doesn't it?!), was injected with radioactive contrast, and a couple of hours later, there I was lying on a conveyor belt for my one hour bone scan. And I visualised all over again: Lance was there, telling me to keep going as this was simply just another climb, you all were there in my different scenarios of being with friends and family, James was giggling... Julian stayed with me throughout the morning, giving me kisses and "I love you's" as much as he could, to the point that the female technician said with a grin, "The next kiss is for me, sir!"

So, now, the wait until tomorrow's meeting with Dr. Plowman. Just another step in the journey, I tell myself. And yes, Katherine, I do have angels a-plenty (I LOVED that lullaby!) - I feel them and I am the luckiest person in the world for that. :-) Hugs to all.

Angels A-plenty

So, dear Danda, you know that all of us are sending our love, positive vibes, prayers - whatever our tack is. Days before you posted those beautiful photos of you and your babe, I received a CD in the mail full of songs I grew up with. (My mother was a singer in a women's group led by a composer and pianist of wonderful talent, Chesley Kahmann.) This particular CD of hers has mostly sacred songs. You know my bent, but I take a loosely spiritual approach to the words and she allows that easily. A lullaby came on as I listened, and I immediately thought of you and James. The first verse:

Sleep you well,
Grow you tall;
Lie in love so easy.
Grow you smart
in your heart
for you have angels a-plenty.

I wanted to sing it for James, as I sing it to my babes. But the last verse came on, and that was the one that struck me - I wanted to sing it for you:

Dream you well
while you sleep,
rest in love so easy.
Cry you not,
but if you do
remember your angels a-plenty.

And then you posted that picture that I think is worth framing - you and James asleep in bed together. I can't stop looking at it. And I thought, what an angel he is, right there for you. But even more, how many angels you have, holding these thoughts for you, holding this love for you. And I wanted to say, tonight while you rest, and tomorrow as you wait for Friday - rest in love, and should you cry, be sure to remember your angels a-plenty. We are all here for you.

it takes patience on the long climbs

To a clapping and stomping beat you chant:

Be Aggressive, B-E Aggressive. B-E A-GG-R-E-SS-IVE. GOOOOOOOOOOOOOO TEAM~!

Is that an international high school cheer or only American. Regardless it has a good beat if you get it going with the stomping and clapping. Very empowering! I had a cheerleader attitude l coming into work today so I thought I would send you along a good old American cheer!

Danda, you have come a long way! It has been a hard road. You have more mountains to climb. Feel free to let it out, that is when you can move forward. Often times you have to take a step backwards to take a step forward. I am telling you some Tour de France action will certainly let you know you are not alone on these long road climbs. These cyclists show a great amount of courage and strength...and tears. They suffer greatly on their daily 100+ kilometer rides. Some fall (at great speeds) and still get back on their bikes broken bones and all to get to the finish line. Some have to accept defeat in a stage and pull for another team member simply because they are not in the position to win "that day". And most cry as they come over the finish line because it means so much to them after working so hard and overcoming many obstacles in order to cross that line. Your tears are emotional releases not dissimilar from these champions on two wheels.

Your Lance is out there at 37 years of age LIVING STRONG and being tested by those much younger than he is, but he is fighting and overcoming doubts every step of the way. Last night we watched him in the Alps wait patiently in the peloton while others attacked up the mountain wanting to gain a lead early on. His coach kept telling his team to, "be patient, don't worry, be patient and you will be fine". They were patient and it paid off. In the last few kilometers, out of nowhere to the viewer, Lance exploded away from the group and turned and burned up that hillside at a pace that had the hair on our arms standing on end. He zoomed past others and you could hear his coach telling his riders from his radio-"Lance is coming alone, Lance is coming." It was a haunting few words-one man was coming to save the day. And sure enough after patiently waiting he rejoined the lead group to help his teammate, Alberto Contador, a Spainard, battle his way to the finish in order to keep the yellow jersey. You, my friend, have all of us telling you to be patient, wait for the results, know that while you wait patiently you are overcoming obstacles everyday as your body regains it strength and health from the inside, out. We are here to get you up that hillside, but in the end it is you who will cross that finish line! Deep breaths, I love you!

Alexis

inspirations

Hi there -
I love the poster Julie referenced -- Live Gently and With Fire. It inspires me to share a couple of other, well, to over use the word, now, inspirational quotes. These are ones I have up in various places in my house, or have had up at other times:

THINGS TO DO TODAY: breath in, breath out, breath in, breath out, breath in, breath out.

Every blade of grass has an angel that bends over it and whispers, "Grow, grow!"

Go confidently in the direction of your dreams. Live the life you have imagined.

Eat a love toad in the morning and nothing worse will happen to you the rest of the day.

Ok...some are more inspirational than others!! But giggles are inspirational, too. Love you - Lindsay

Good Morning

Hello Alex,

I have been watching pictures on TV of the eclipse. What an amazing event. Just think - the moon and the sun are in line this week, it is an unbelievable occurrence, and a spectacular day. I know you have put a lot of weight on the markers of treatment, the appointments with the doctors, the scans, the tests. That makes sense.

But remember, there are things that cannot be measured and tests do not always capture what is going on behind the scenes. I know that the green juices, the mornings with James, and the slowing down of life all make an incredible difference. The marathon continues and you are keeping just the right the pace!
I love you,

Lisa

wandering thoughts from julie

Dear Alex,

I'm sorry that I haven't written sooner. Life has been busy as we make final wedding preparations for our wedding in late August. I'd love for you to be able to attend, but I know that you are not feeling so well...and you're awfully far away. I will send pictures.

I wish you were closer. As another post writer wrote, I, too, wish that I could just drop by your home and spend time with you in the way that we used to. You would make wonderfully healthy dinners and a glass of wine with you at the end of the day was always such a nice way to relax. I miss you, and I wish that I could give you a hug on all of those days that you are overwhelmed with grief and exhaustion.

This is overwhelming stuff you are dealing with, and it is so normal to be sad about it. No flogging is a wonderful thing to keep saying to yourself. There is a way to fight and also be compassionate toward yourself for all that you are managing. I wish you patience and kindness toward yourself. Remember your poster, "Live Gently and with Fire". Gently, Alex.

Anyway, I'm a little sad myself tonight. I miss you very much.

I hope that Thursday goes very well, as it sounds like it should. But, just don't lose the positive of what he is saying by listening too hard for perfection. You'll get there in time. And, we'll get to visit again one day, soon. If you come to Wakefield, I'll make you a very healthy dinner and of course, a glass of wine. Much love to you, Julie

No flogging

Hey, Shweetie -
I know it's important to pull yourself throug the hard, sad, scared, emotional, drained times and find your fight, find your hope, find your sense of wonder and your moments of joy. I know. And you are amazing at it, and you are reaping the health benefits of all your positivity. But I find myself wanting to lighten your self judgment about those hard times a bit. It's not really a pity party to feel everything you need to feel, my friend, even the painful parts. Of course you have bad days, bad weeks, bad months. Of course you feel weepy, sad, scared, frustrated, angry, full of longing and ripe with agitation. Of course. It's okay to feel all of that. I don't mean to quiet your fight at ALL...but I find myself wanting to take the switch out of your hand. No flogging yourself for your feelings.

I also want to say that I can SO relate to how hard it is to leave your house, your safety, your routine, your food, your bed, and head out on an adventure. I remember hitting the point of wanting t be able to travel for a weekend with Chris when I was really sick with my initial Crohn's outbreak. It felt really hard and really scary. I remember that we chose our B&B based on which one would put a little fridge in the room for us so I could bring my own rice milk and other safety foods. We kept expectations down, and it felt GREAT to be out, to lay eyes on new sites, to do a wee bit of yoga on the coast...it was worth it.

I will be sending powerful mega vibes all week in anticipation of your appointments at the end of the week. Lots of l0ve - Lindsay

The joys of summer and sisters

Danda, you were right about the reason for the silence--entertaining family here, moving one son and entourage to Boston, exploring Squam Lake with three sisters--all wonderful fun, out and about, but with little opportunity to get near a computer. Nevertheless, you are always on my mind, my lucky penny is always in my pocket (even if I have to retrieve it from the bottom of the dryer occasionally), and I am always wishing on shooting stars and wishbones. I am doubling my efforts this week as Thursday approaches. I am determined to hear that Dr. Plowman beamed at you and reported good progress.
So here we are-the four Griffith Girls (hardly "girls" anymore but whenever we're together, we have a way of slipping back to West Hartford and Concord days when we were in fact still girls) on top of a very small mountain in central New Hampshire overlooking Squam Lake, site of the filming of On Golden Pond. For four days we celebrated the 60th birthday of Sue, front right, staying at the lake house of Pam, front left, marveling at how Penny, back left, seems to remember all the little details in the stories of our youth. We hiked, picniced, kayaked, motored the boat to view eagles and loons and quiet backwaters, and cooked elaborate dinners accompanied by exotic drinks, while I read parts of our dad's memoirs of his childhood and school/college days to everyone. We wish he had gone further and revealed all the secrets of his undercover work for Monsanto Chemical Company in Germany in 1938; after he graduated from Princeton, he was hired and apparently sent to determine how far along the Germans were in developing an atomic bomb. He never told us any details; he just hinted at having to be quickly smuggled out of the country...Did he learn something key? Did the Nazis suspect him? I'm afraid we may never know...Happily, there were lots of amusing vignettes involving his grandfather or father or him or a combination thereof in Kansas City, MO and old sepia-colored pictures of relatives we never knew, looking very buttoned up but interesting.
One day when you and Ciara are in your late fifties and mid-sixties, you too can sit around and reminisce about your early years on top of a little mountain overlooking Lake Como or Lake Derwentwater. I can just hear the giggles and feel the wind in your hair and see the light in your eyes. You will be completely yourselves because that's the way sisters are, no matter how different they are. Tuck that away for the future. Be grounded in today. Cuddle with James. The images of the two of you in bed together are so sweet! Love to you all.

GOTCHA!

Hey Danda!
Yikes, you could be this poor girl captured by a Somali pirate. I can't imagine why she is laughing for, after all, the consequences could be dire! The good news is the pirate is Chris in his usual garb when he has had too much sun and is burnt to a crisp. He is driving the tender to ALESSANDRA, a 19' open boat which he and his friend Morgan put together. The "black boat", as it was known, sat in Morgan Avery's back yard for 3 years breeding mosquitos and languishing unfinished and unloved. That scenario is what Chris calls opportunity. Instead of buying an inflatable which cost beaucoup bucks, and as Chris was at the bottom of his barrel of doubloons, and as Morgan was going along on the Lauderdale to STT cruise, Chris convinced him to sell the hull for a song and then, like Tom Sawyer and the white picket fence, got Morgan to help give the boat new life. They put a deck on, fore and aft, sealed both ends for extra flotation, scrounged an engine, added a teak rub rail for chic, and voila! - The tender to ALESSANDRA. She can hold 8 people loaded to the gunwales. There are no seats. You just sit with your back to the side, your butt on a stringer and feet in the middle. Then you stare at each other and pray the thing won't sink. Sounds like a party, right?! It draws practically nothing, so it is great for exploring coral reefs and beaches. It only weighs 500 pounds, soaking wet, so it can be hauled up on deck with a halyard, turned over and not have to be towed. I think with a canvas cover it resembles one of Shackleton's lifeboats. Good Karma, I hope. So, if you and Julian want to be "captured" next time you are in the islands, Chris will do so, let you off on a secluded atoll and return for you in a few hours. Romance!

Send to Taiwan

Hi Alex,

Summer has proven far busier than I expected.  I still measure the years by “end of school” and “back to school”, so I always expect that in summer there will be nothing to do, alas, ‘tis not true!

In any case, I think about you every day.  I really wish that I lived down the street, so I could pop in with some groceries or a freshly baked loaf of bread.  Then we could have a chat over some green tea.  My latest favorite is a peach infused decaffeinated green tea.   But since I’m an ocean away and in the meantime, I’ll catch you up here.  By the way, while I write this I am drinking some of that tea.  Ian and I had our second home study meeting for the adoption.  (There are two group meetings and two private meetings – one at the agency and one at our home.)  I was so anxious about the private meeting.  I could barely speak and when I did, I didn’t make much sense.  You know when someone says, “Hello!’ and you say, “Good!”?  It was one of those.  I’m always thinking that they’re going to ask really personal questions and then respond in doubt with “Really?  Oh really?  Is that your final answer?” to our answers.  So I spent most of the meeting wondering why the social worker was talking so much and when was she going to get around to asking us about us.  It’s a complicated relationship, while I fear it, I’m also waiting to talk rather than listening.  Well, she never asked those personal questions.  She was basically just describing different birth mother scenarios, so we’d know what to expect – I figured this out about an hour into the meeting at which point I relaxed.  Ah, anticipation.  Anticipation is my enemy.  The next meeting is in September, so we have a little while, but it’s feeling like forever.  I’m often telling virtual strangers about our adoption plans.  Not like walking up to people and introducing myself and telling them, but when I’m working my shift at the Food Coop or at the Garden.  I’m surprised by some of the adoptism that is out there.  Someone always knows someone who adopted – usually from Russia – and the kid was a mess, killing puppies and kittens and hurting other children…so they had to send him back or their life has never been the same.  While I don’t think that they are lying, why do people say such things?  No one ever says to a pregnant woman, “Oh, I once knew a pregnant woman who gave birth and her son grew up to be Jeffrey Dahmer!”  Anyway, I guess I should get used to it.  People don’t always say exactly what we want them to, but that doesn’t mean we have to listen.

This weekend we head up to Maine for a week.  We’ve rented a house in Acadia, in Southwest Harbor.  It’s one of my favorite places in the world – of the places I’ve been.  I’m excited for the hikes, carriage roads and the fresh produce and a little taste of country living.  It’s one of the places you and I have in common, besides Cooperstown and the USVI.  One of my other favorite places in the world – ALEXIS -- is Hawksnest Beach at Caneel Bay.  Ian and I honeymooned there.  You can’t beat those beaches!  Congratulations and good luck with the planning and know that you really can’t go wrong with either of those options! 

Well I’ve gone on for a long time here.  Good luck this week.  I’m sending you strong, positive vibes.  And here’s another little mascot for you – your favorite feline friend, Mitsu!  Remember how much you loved petting her and letting her crawl on your head!  I don’t know if you can see it, but it appears that she is headed to Taiwan.  Please send my love to Julian.

xoj

PS.  I wrote this before you posted – so I just wanted to add that you look beautiful and James is beautiful and I love all of the photos.  I love how serious James looks before he is asked to “push” and then the glee that follows!  Hang in there, sweetie.  We are all pulling for you and sending lots and lots of health and love vibes.

 

 

Joy is James, James is Joy

Dear All,

So lovely to be welcomed by blog entries this morning. It has been one of the quietest stretches on the blog for a while, my silence stemming from a tough week emotionally. Yet I smiled in the hope that your silence was because you were probably all out and about, away from desks and computers, enjoying what the summer has to offer. As it should be! :-)

The last week had the makings of a pretty "blah" week for me - one of those where you feel low, but can't put your finger on why exactly you feel more down than usual. Chemo? Low immune system? Frustration? Fear? Sore body? Upcoming scans? All or none of the above? I have struggled with the ongoing issue of having to redefine "normal life", for I resist the new normalcy as it feels burdened and heavy, and I long for the lightness associated with summer and not having to think about my health. Admittedly, it has been a week of my bigger meltdowns - the need to just sit and cry it out, in frustration, in sadness, in tiredness, in longing. Sometimes, you just need to vent and have a good weep. I was asked what my plans were for the weekend, and the thought that first came to mind was, "I plan to fight, like I do everyday. I find it hard to plan beyond that..." In fact, the thought of orchestrating an excursion can make me incredibly anxious - I don't know why. I should want to "escape", to "get away", to seek "distraction"... but I find that the idea of being too far from home makes me agitated. It's as if I need the comfort of my routine, my things, my proximity to the hospital to feel "okay" at the moment. I guess that I also worry that I won't have the energy to carry the day out in the way that I envision. And yet I so badly wish I could take a vacation, that I could enjoy a "break" from all of this. I am a walking bundle of contradictions! But, as has been the case before in this journey of mine, the mood eventually lifted, dissipated, and enabled me to say, "Enough, Danda", and believe it. And so, I thought of plans - to take trips to see friends and family, to visit my 101 year old grandmother, to ride under the sails of the Alessandra, to see my dear cousin get married.... to heal, to recover, and to celebrate life. I plan for the future. And I learn to accept the present, and to live the day.

So, having survived a 5 day pity-party of my making (where the menu was tears, tears, and more tears and I was the only one in attendance), I spent the weekend refocussing on all of the joy in my life. And center stage, was James. I have attached recent photos of my munchkin - some taken in the park, where we played and had a lovely time, others taken on Sunday morning, when I was feeling particularly poorly physically, and James joined me for cuddles in bed. And the brief video is a snapshot of what never fails to make me smile - James' giggles. The new firetruck that Julian gave him is the source of endless fun, as you can see. Oh, by the way, James' first word is officially "duck", which I grin at given that it was my first word as a baby... he may look like Julian, but he's my boy! :-) I just adore him.

So, these are the images that are giving me strength as I prepare for my scans this Thursday, and my meeting with Dr. Plowman on Friday. I know that the news will have good parts, as I have seen and felt first hand the improvements. I am just hoping that there will be many good parts - that my liver has followed suit, and will similarly reflect the cancer once again in retreat. I want another "That's amazing!" from Dr. Plowman - why not aim high, I ask myself? My body continues to feel strong, aside from my feet and fingers that have once again become very sore and bright red and tender, freckled by my chemo burns. But heck, 95% of your body is healthy, I tell myself, don't ever forget that Danda.

It is time for a juice, as the fight goes on for yet another week. Brace yourself, Dr. Plowman, here I come. Hugs to all.

holding hands

Dear Danda,

An eventful week! Alessandra sets sail and I feel that I too have caught the winds of freedom in deciding that Jeff and I plan to be married in "the islands" in May. It took a dinner with my good friends, Vicky and Brett, stopping through town on their way back to Shanghai to make me realize that despite my desire to marry in a field or under an oak tree or in the dunes on Nantucket, that the USVI is home and there is something about going to be married that is my calling. If these friends say they will make the trip from China then I fully believe that others will make the trip as well!

Now on the the next stages, Caneel Bay or home? Both hold quite different possibilities so I will spend the week at work distracted by the options. I think Mom has caught on to my desire or a Caribbean wedding with an east coast sensibility. Think turquoise and kelly green.

I hope that you spent a nice weekend welcoming your mom back into town or spending time with Julian and James in the park. I know this week will be a long one as you prepare for your scan, but I am wishing you peace of mind and a clear head with positive thoughts that your healthful diet along with your enduring your treatments will yield positive results. Sending positive vibes your way! Have white blood cell counts returned to normal and is your body feeling stronger? Your troops are all behind you sending well wishes and holding hands with you in the middle trying to keep you safe and protected. A nice image when you think of us all around the world holdings hands.

Much Love,
Alexis

ANCHORS AWEIGH!

Dearest Alessandra - I give you ALESSANDRA leaving the dock on the Intercoastal Waterway in Ft. Lauderdale. From here she proceeded down-river to the meet the great Atlantic. As you can see, her bow seems to sense the huge expanse ahead. She looks a bit timid as if she had been away from the ocean's freedom for so long that she had forgotten the rhythm of wind and wave. I can assure you that this temerity was short lived. From Lauderdale to Bimini was the first night's adventure. Glassy seas, I gather, so she had time to "get her feet wet". From Bimini to Gun and Cat Cay where the water was so clear at night you could see the sea floor illuminated by the lights on the spreaders. "Magical", said Chris in a rare demonstrative expression of awe and elation. It must have been, or I would have heard "cool" or "really sick, man". Then on to Nassau to pick up Jessica, bringing the crew to full complement. Today, they sail southward down the Exuma Cays, a long line of atolls - flat, sandy pancakes in the middle of azure seas. Cell phone reception is spotty at best so the technical marvels of i-phone photography cannot bring us instant gratification in pictures. I presume we will have to wait until Turks and Caicos for further word.
Meanwhile ALESSANDRA is where she belongs, riding the high and free as a bird! God Bless her, and all who sail on her.

time

Hmmmm...it is Saturday the 18th. It looks like there haven't been any posts in about 5 days. Is time moving fast for all of us, or has something gone awry in my blog access? I realize now how accustomed I have become to regular additions and updates. And yet, I don't really have anything new, either. It has been a ridiculously rainy summer so far. Between the weather and the effort to get settled into the new house, there have been very few days that have felt like summer. On the house front, the unpacking continues. I finally found my shoes. We have emptied the hot tub and will try refilling it and sanitizing it ourselves with a non-chlorine system, and we'll keep our fingers crossed that Liza's hair won't get any greener (it is still tinted green, and Tessa still has "splotchies" -- my my). I caved to my husband's dream of a flat screen TV, but kept it to 32 inches. We have realized the broiler doesn't work. Etc, etc, etc. The biggest change is getting used to neighborhood living. We had 7 kids at our place yesterday afternoon! And two of the neighbor kids were at our door this morning before I was even out of my nightgown. And Liza is so independent, spending more time with friends than she is at home, all of a sudden. I am noticing new stages of letting go (for me, that is!), new kinds of limits to determine (like, no, i don't think it is okay for the two 6 year olds to play in my house when all the adults are two doors down). And then I have to challenge myself to figure out which new limits to immediately start letting go of (like, "It's 5:00, time for the neighbors to go home so we can have some family time." But 5 minutes later, the 6 year old is plopped in front of the TV while I make dinner...so, 5 minutes ago she was engaged in creative play with a friend, and now she is watching TV while I cook in the name of "family time."...hmmm...I either need to relinquish that new rule, or find some new creative ways to engage my kids in helping me make dinner. Change, reassess, change, reassess). I'm not particularly coherent -- time to sleep. But that is my update -- chaotic grammar and all!! I hope your week went fast through the crappy parts and slow through the wonderful parts. Thinking of you. Love - Lindsay

POSTIVEly STRONG!

Danda,

You are a strong woman if you can find the silver lining while being hooked up to an iv. Not an easy thing to do....to control the negative thoughts. I saw an interesting thing on the tv the other day. A woman who had been through a brutal car accident and was not in good shape was asked how she she stays so positive despite her circumstances. She said that she allows herself to cry for five minutes every day. But after that there is no more crying. I thought that wonderful, to give oneself permission to be sad or mad, but then to move on. Who knows, some days with permission granted, you may find yourself not needing to acknowledge your sadness and that day and what a wonderful day that is!

Your little James is something else. If he is not the cutest little boy on the block I don't know who is. In his blue and white stripe shirts and pajamas! I love his fashion sense- tres francais! all the way! I love my striped shirts like his, Jeff always laughs when I put them on. He says, "you, sailor, you." and giggles because he knows how much I love to wear my stripes and pretend I am in some French costal town about to walk to the corner boulangerie for my daily baguette! We can hope can't we!

I am so glad you had a wonderful day with James and that you were able to wander out to the park with him to see the world through his eyes and sighs-Cack!

I also see signs of your hair growing back. How exciting for you. Chiara said you looked like a sexy Sinead O'Conner. I take that as a compliment because I always thought she was striking and with your big brown eyes I can imagine you are looking striking yourself!

I have been watching the Tour de France. Simply amazing as always-they are about to head out of the Pyrenees. You should tune in if you get the channel. Your man Lance would make you proud! LIVE STRONG!


All my love,
Lex

"Cack!"

Dear All,

Just back from the hospital, having had my mid-cycle chemo. Bloodwork came back okay, although it is predicted that I will need six immune boosting shots next week, to keep the levels up. I sat there with my book, being hooked up to the usual IV pole, and admittedly was feeling a bit agitated, needing to work that extra bit harder to keep negative thoughts at bay. One of those mornings requiring some extra deep breaths... but then life reminded me to be thankful for all the good, as a man came into the Chemo Day Unit and sat on the bed next to mine, sharing with the nurse that he had had a shitty morning - his brain tumour was causing him to have mini siezures... and in that moment, I felt grateful for my own situation. It's all relative, isn't it?

I had a good weekend, where I immersed myself in James. We cuddled so much, we played for hours, and we marched, marched, marched! I attach photos taken of him in Kensington Gardens (where he adored the swans and ducks) and of him hanging out at home Sunday morning. He has also been babbling up a storm... his new sound is "Cack!"... we have been trying to gauge where the hell that comes from... is he trying to say "Duck"? "Quack"? Or could it be the charming beginnings of "Caca"?!!?... He says it with such intent and gusto - "Cack! Cack! Cack!" He has made me laugh out loud and smile from ear to ear.

I must go and lie down, as I let today's chemo do its thing. Hugs to all.