Family tidings

My mom and sister wanted me to pass on their love and let you know they are thinking about you. The love is juzt oozing out of this little house in Vermont for you! :-) - Lindsay

Gobble

Just wanted to say Happy Thanksgiving. I am so thankful for you. I love you and I miss you. More soon...not much time but needed a touchpoint.
Gobblee gobble - Lindsay

Gobble, Gobble.

Good evening Danda,

I write this on one side of the world where the sun is rising realizing that the sun is already almost setting on your side of the world. It reminds me there is a cycle and a changing of things in this world. What goes up must come down. Where there is suffering there is joy. Where there is death there is birth (or in the case of Dad, twins on the day he died because it takes two to replace him). I try to remember that there are always positives and negatives and ups and downs and that is the cycle of life.

I am thankful today for being able to appreciate that life is ever changing and that by way of being put here on Earth we must embrace all that happens because that is living. We are blessed to be here...living. Danda, I am thankful for you and your ability to embrace life despite how unfair and difficult it can be. You are the embodiment of life. I am in awe daily of your resolve to not bow down and surrender to the unknown, but to hold your chin up and march forward each day giving no mind to the cancer you have killed along the way that day. I imagine you marching across England through this battlefield and some time in the near future hitting the coastline with nowhere else to go and arriving at the end of the fight victorious; looking out to a vast horizon of possibility. YOU are what I am thankful for today along with all the family and friends who support you becuase in my eyes WE are family and for that I feel a part of something special.

gobble, gobble,
Alexis

Happy Thanksgiving to My Troops

Dear All,

A quick note to wish everyone a Happy Thanksgiving - if I could, I would call each and every one of you... as you can see, James has a knack with the phone! I am in hospital, having spent the night here due to my marathon chemo session yesterday, that finished at 9:30pm. I have one more drug treatment this morning and then hopefully I can head home this afternoon. I can't wait. I am feeling a bit "fuzzy" from chemo, a bit "off", but otherwise I am doing alright.... at least for now! I am hoping to squeeze in a good walk tomorrow before the downpours that are forecast for the weekend.

In the spirit of this day, I am thankful for my wonderful family, for my truly amazing troops, for my great team of doctors and nurses, for the powerful love and support that shower me, without fail, every single day. I am thankful for the pep talks and cheers, for the hugs and understanding, for the many messages, thoughts and good vibes. I am thankful for the laughs that pick me up, for the comfort when tears fall, and for the visualisations of a better tomorrow. I am thankful for hope, for determination, for belief, for dreams. I am thankful for James, for everything about him, and for the pure boundless joy that he fills my life with.

And I am thankful for my body, which has withstood 17 cycles of chemo, and is still marching strong, one foot ahead of the other. My body continues to show me that I can be unrelenting in this fight, that I will not give the cancer an inch, that however long this healing will take I can outpace, outlast and outwit the f%#~er.

Happy Thanksgiving and the most loving of hugs to all.

HAPPY THANKSGIVING

Hi!

Just wanted to join the choir wishing Happy Thanksgiving to everyone on this blog. It's a great celebration and one of the things I miss the most from the US. Panda, I know today you're in the hospital and are not looking forward to tomorrow's chemo's side-effects. I'm keeping my fingers crossed for you. Perhaps this time they will be milder...

A hug.

Giving Thanks

As we begin Thanksgiving week, I am thinking a lot about what I am thankful for this year. Family, friends, work, I am thankful for all of these. However, I want to send a special message to all of you here on this blog. I have truly grown thankful for this group. I feel like we have become a bit of a Blog Family. Of course the circumstances through which we were brought together I would change if I could, but here we are none the less, brought together by our dear Alessandra. So Happy Thanksgiving to everyone. May you and yours have a happy beginning to this holiday season and find more to be thankful for than you could ever imagine possible.

Lots of love to all,

Mary

Rome awaits!!!

Dear Danda, it´s true you never cease to amaze!!! And 45 minutes running/power walking is no small feat...it is BIG, VERY BIG!!! Enhorabuena to you and your faithful running "companion"!! I follow Giovanna´s creative idea to change colours (and add colour!) in honour of your untiring, fighting and admirable spirit! Orange is the colour of joy and creativity, and promotes wellbeing and enthusiasm. Somewhere I read that it helps one "handle the ups and downs of life with finesse"...sounds very familiar:)

So...I was in Rome at my Nonna´s when I read about you having to skip your planned trip to "la città eterna" to see your own Nonna after so long. I was soooooo sad to hear that, and I would have done anything to have you be there instead of me!!! It was so disappointing and unfair...But, as dwelling on what could have been and isn´t takes us nowhere in life, I decided to think positive again. It´s the least I could do for a friend I pray for every night before I fall asleep, and whom I trust is heading towards her dreams no matter how much she is having to fight for them. So, as I walked through Rome´s pine-lined cobble streets I smiled and pictured you walking along those same streets, admiring the intensity of the city´s colours, smelling the mouth-watering scent of fresh-baked pizza, tasting the delicious froth of a true cappuccino. And then, I asked the gentle autumn breeze to send you a taste all the way to London as a sign that one day you would be doing exactly that!

I remember last year I couldn´t be with my father on his birthday as it coincided with the most intense days of the event I was organizing in Barcelona. It was an emotional day for I knew it was my father´s last "terrestrial birthday". Luckily, there was no time to dwell on the sadness of missing such an important occasion, and it was only later I got to understand that Life had a much more important gift to offer in return: I was able to spend my father´s last night with him, holding his hand and whispering in his ear. There are no words to describe the meaning of those last earthly moments with him. All I know is that it´s true that sometimes a door closes and then, unexpectedly, a beautiful window opens. Keep believing, Danda, fighting and believing as you have until now. There are those crazy moments in life when we wonder if we´ll ever make it out of the maze your Uncle Geoffrey so wisely spoke about, when we cannot see the light at the end of the tunnel or the sun behind the clouds. But in the end they are "just" clouds, it´s just a tunnel and it´s just a maze! Easier said than done, of course, but perspective is vital if we are to keep our direction and steer as well as you have until now. Yours are victories that go way beyond what appears on the scans, and I am sure that one day the scans will finally align with all the healing that you´ve managed to trigger in these long and difficult months filled with millions of "silver linings".

Un abbraccio fortissimo!!! Love, Sally

Happy Thanksgiving

Hello Alessandra!
Great to hear you so on top of the world in the last blog, and that the fighting spirit is unabated. Not that I'm surprised, just so happy you've reached yet another level of strength and tranquility in this 'camino' towards victory. Anyway, a student sent me this video link and I liked it so much I thought of sharing it with you. Nothing to do with anything in particular, just a wonderful story to enjoy. Or maybe there is some subtle message in there, about caring, misjudging, and learning, always learning. Lots of love, and in thanksgiving for your continued upward climb,
Here you are http://www.youtube.com/watch?v=Zxa6P73Awcg

a runner's high!

Danda,

What can I say, I am overjoyed, smiling ear to hear and just plain so happy for you! Your words tell me you are in a good place mind and body. 45 minutes of activity. That is no joke for people who are not battling disease. I am most impressed with you and your mother for getting out there and doing what one might thought could not be done.

To move ones body freely is a glorious feeling. To pick ones feet up one after the other and move forward is invigorating. YOU ARE STEPPING OUT!

I went for a run tonight to try and shake the nerves of wedding planning off. And without fail it worked. I came back feeling like I could take it on and actually possibly enjoy the task at hand. I am looking for photographers right now and with a limited selection I am feeling like I am giving in to something simply because it is all there is. But then on the run I paused and thought-it is the people who make the pictures, not the photographer. If the people are fun and happy the pictures will exude the same. I am dwelling on the details instead of the big picture-please tell me you can relate. But as of late it seems you are reaching deep into yourself and finding the big picture. I can learn a lot from you!

The time with my mother was nothing short of fantastic. One on one with mom is something every daughter craves and I got it. She walked with me, hiked with me and even rode a bike with me. We found a wedding dress together, just the two of us- the power of a mother and daughter is a force to be reckoned with. Go fill your lungs with fresh air as we did here in California!

I attached a video of a moment on the top of Mount Tam looking out to the Pacific. I am working on my video skills, but I think you get the essence of the calm we were experiencing!

I love you. Keep doing what you are doing because it seems to be working-you are going to beat this thing whole hog! 2010 watch out!

xoxo,
Lex

run baby run (a Cheryl Crow song)

Dear Alex,

Your blog brought tears to my eyes this morning. And, yes, I am pregnant and hormonal, but mainly I am just so happy that you feel so well. I can picture you running with your mother and allowing the health that you have fought for to fill your lungs and body. YAY!!!!! You are so awesome!! Congratulations.

Hang on to this feeling and remember this run for times when you are in the hospital feeling low. Your body can and will do miraculous things, you just need to remember and believe. Much love and many hugs to you!! xoxoxoxo,
Julie

That's My Girl!!!

All I can say is you go girl!!!

So happy to hear my person is getting out and about and moving on through this crap with your head held high, loads of hope and happiness to look forward to.

I'll see you in the New Year and you won't know what to do with all your free time!

Love to you all and have a very happy day!!

Miss you!!

Eve

P.S. A rainbow for you with a pot of gold at the end. Do you know where this is?????

YES!

Hi Panda,

Your news is so great that it calls for a change of color! I'll go for red, the color of energy, fire, anger, passion, courage... all the best things that mark this fight of yours against this obnoxious disease. It was wonderful to read you could run! Even better to read that you feel great! What a blessing! This will give you so much energy to fight even harder during these two-week cycles, and boost platelets and white cells growth. You can have your Christmas a couple of days later, or earlier, I'm sure nobody will mind a little shift! Who knows? Perhaps, after all, you will feel well enough to enjoy a full Christmas on the 25th.

A big hug.

(And congratulations!!)

WOWWWEEEE!!!

Holy cow, Alex!!! What an incredible story! I can feel the lift, the hope, the freedom, the strength, the relief, and the normalcy from here, like a big shiny wave. I wish MY run had felt that good, today!! (I was on that beautiful road where we walked, you, me and our men). It even sounds like there is energy a nd strength behind your new chemo plan. Yes, it sounds daunting, and yes, being who you are, it is doable. I'm thinking of you every day and sending you huge love across the pond. Rock on - Lindsay

Superdanda!

Good golly, you have shocked me! Hooray for running! I'm so glad that you have been feeling better and more balanced. Kick that f*&%$#+ to the curb! You are a superhero!

Lots of love and hugs,

Jess

You ROCK!

Woman, you never cease to amaze. At this rate, you will have too much hair the wear the damn hat I knitted you last year. Let's hope so!! Here's to showing up the f#*(er!!!

Joy.

Dear All,

I was supposed to have my mid-cycle chemo yesterday, but my blood count came back very low, especially my platelets. And when I say low, I mean low. Your platelet count should normally be above 140... mine was 35. Needless to say I should stay away from sharp objects?! So, I met with Dr. Plowman, and we have a new plan. It seems that my blood count is consistently very low mid-cycle - I haven't had a mid-cycle chemo hit in months. My bone marrow is exhausted! Therefore, we are now switching to a fortnightly cycle regimen, instead of three-weekly. Meaning that I get chemo every other week. One week on, one week off. Sounds daunting, but it's doable. I will most likely require a night in hospital each time (due to getting 8 hours of chemo and fluids, followed by very close kidney monitoring as the meds are so toxic) and will feel lousy three to four days after chemo (which I dread), and then it will lift, giving me 10 days of feeling "well" during which time I will get immune boosting shots to help my bone marrow recuperate from the hit. And then we start all over again. So, my next three chemo dates are Wednesdays Nov 25th, Dec 9th and Dec 23rd...disappointing that the new regimen means that I will be in my chemo fog on Christmas Day... but on the flip side, I will be welcoming in 2010 on my "off week", feeling great. And 2010 is my year.

And here's the thing: I feel well. No, let me rephrase, I feel great. For the past few days, I have had this inner sense of well being, have felt full of energy, and have had a huge appetite. My soles and palms are healing. My hair has not fallen out. So, this morning, I went for a run with my mother. Yes, you read that correctly. I went for a RUN! I have not done any exercise for a whole year aside from walking and, at times, even that was gingerly done given my terribly sore feet and weary body. But this morning, we decided "to get some air into those lungs"....

And for 45 minutes, I did that and more. We alternated between power walking and running under the amber trees and autumn skies... I expected to feel my legs heavy, my chest tighten. I expected to feel out of breath easily or to feel the pounding in my head that has often accompanied any physical exertion. Even before getting sick, I was no great runner. But, instead, running this morning felt WONDERFUL. BLISSFUL. My legs carried me, my heart was steady, my lungs felt full and light. At one point, even my mother had a hard time keeping up! And I felt like crying with joy, as I grinned from ear to ear. My body is surprising even me!! It felt easy, it felt liberating, it felt uplifting. I wasn't having to visualise myself taking strong strides, feeling the pavement under my feet, hearing my breaths propel me forward... I was DOING it! Take that, you cancer f#$*er! 16 rounds of chemo under my belt and I am RUNNING! Lance, watch me go!

My mother and I reached my front door and just hugged and hugged and hugged. Both giddy from the happiness that comes from appreciating something so little that, for me, felt so very very big.

Hugs to all.

Surfing this wave until it glistens on shore

Dear Alessandra,

Upon waking up this morning and grabbing my cup of coffee, I opened to your latest blog message and felt the warmth and the sense of calm you were wrapped in, however momentarily, envelop me as well. What a way to start my day! Bless you. I hope those moments of serenity you were feeling yesterday are more and more frequent as the days pass, allowing you to keep the new rounds of chemo and nausea and the other unpleasant side effects in their proper place, not engulfing you in some monster wave.

Truly, when I read about the latest scan (all the more jarring because I had assumed you were off to Italy and I was happily imagining the attendant joys and feelings of normalcy that trip would engender), I could only conjur up some enormous Hawaiian wave of water, some rogue wave that even surfers might cringe at seeing. I was so scared and disheartened and angry for and with you as I contemplated this huge wall closing in. It felt so crushingly real and close. I wasn't sure I could breathe the right way after vicariously sharing your immediate reactions to the meeting with Dr. Plowman.

But now I see that you have not succombed to this giant f!#$%& at all but found a way to skillfully manuever to the side, all the while moving forward, riding the wave and surmounting it at the same time. You are AMAZING and WONDERFUL!!! I suspect that Julian, James, Ciara, your mum and dad, Lex and Lisa and Geoffrey and all your troops have helped in the process immensely, but finally it is YOU, always finding a deeper reservoir of resolve, who has had to find a sense of equilibrium again and the gutsiness to move forward. Only believe. And visualize some time in the future, after a very long, arduous journey, this wave is going to beach somewhere, making the pebbles sparkle in the sunlight and the children laugh in glee. Spot free. Liberated.

Here's to nose kisses and hugs and giggles and green tea and veggie juice!
xxxxx

Peace in the Storm.

Dear All,

The winds are howling away outside, with buckets of rain pouring sheets of water down our window panes. A truly blustery day that has dictated a cosy afternoon indoors. A truly blustery day that stands in contrast to how I feel inside...

The side effects from this latest round of chemo were less brutal than I had imagined. After 8 hours of treatment, combining three IV meds and bags of fluids, I spent the night in hospital, with my kidney function being monitored closely. I was discharged the next day, and then laid low at home. Awful nausea and periods of the dreaded "chemo coat", but not intense and no vomiting. The need to curl up into a ball on the sofa, but not to hibernate for days. Some crying, but no sobbing. And slowly, that deep rooted malaise began to shift, and my body began to bounce back on its feet, bruised from the "hit", but far from battered. My palms and soles are better, now that I no longer am on the oral regimen, and it has done wonders to my sense of mobility. My skin remains a mess, sore and peeling, but I see the initial signs of healing. I will receive another chemo hit on Wednesday, the "mid-cycle" dose, which will entail another overnight hospital stay, and more monitoring for this cumulative toxicity which courses through me. And so goes the new "routine" of mine. Two weeks on, one week off, and then we start the next cycle. And all the while, I live my life, as normally as I can.

I want to share that I had a moment of "peace" yesterday. I know it sounds odd, and I do not mean to sound dramatic either, but literally, in the middle of my day, I had a few minutes when I felt a true inner calm. A shift of sorts, however momentary. A feeling that I will be okay. There was none of the underlying worry that, subtle as it might be on "good days", is always with me. There was no fear, in that instance. There was a sweet feeling of relief. Even though short-lived in its "purity", it was a wonderful moment in my day. And for that, I was grateful. I cannot begin to put into words how distant it feels to be in that place where your wish to live does not pervade your thoughts... I will get there, one day. But in the meantime, yesterday, I was given the unexpected "gift" of a moment of true peace amidst this storm of mine. And I treasured it.

James gives me "nose kisses", and giggles while he holds my face in his hands. There is such joy in our bond. It quietens the storm around me. And I am cosy. And safe.

Hugs to all.

Quick note

Hi Panda,

I'm sitting in the library, where I've just checked out Armstrong's "It's not about the bike". I never read the book, so I finally decided to do it in your honor. The first thing that caught my eye was a list of quotations on the jacket, sentences from the book that were so rich to be able to stand without context. The first one (and the first thing I read after the title) is: "I continued upward, and the mountain grew steeper." I thought: this is exactly what she is feeling now! So I had to share.

You'll get up that mountain, Panda, no matter how hard the climb!

A big hug.

Deny the F*&#@R!

Pesky, faint, possibly necrotic, squint-worthy liver spots are no match for you, Alex. Come on, let’s be realistic-they don’t have a chance. They’re goin’ down! I’m so sorry about what you are going to have to go through to get rid of them, but you’re definitely going to show them that you’re not messing around. And man, are you going to have years and years and years of good karma coming your way when this bull&*#^ is over.

I was watching a slide show of cancer survivors and one guy said that he was able to stay positive by denying the cancer. I thought you could use a little of this from time to time, so when you start feeling down, maybe it would help if you started practicing the art of denial. For example: “Cancer? What cancer?” “Hair loss? I don’t know what you’re talking about. Maybe you should get your eyes checked.” “Tired? I’m not tired. I’m just lazy. I want to sit here all day and have people do things for me and watch television or listen to music. I’ll even lay down and close my eyes if I feel like it, damnit!” “Nausea and vomiting? No, I just didn’t like the dinner you made. You need cooking classes!” These should get you started.

Sweetie, you’re getting there. You have made so much progress. I hope with all my might that you are spared the side effects you so dread. I love you and I’m with you. xoxo

Chapter 3, Round 1

Hey there,

OK, your last post was not the Bollettino della Vittoria YET, and the two faint shadows in the liver do sound like the old chemo regimen has stopped its magic towards the end. After reading your description, I admit it, I thought that the new regimen sucks, and I am really sorry that you have to go back to the side effects of your first months of the cure. However, each time you have changed chemo schedule your disease has suffered the most; therefore I am confident that this new change, as difficult as it is going to be for you, it is going to be a hundred times worse for... it.

This battle seems to require strength of spirit as much as, if not more than, strength of body. You are showing us every day proof of indomitable strength and determination, and this is what will make you win in the end, more than the chemos, the perfect nutrition regimen, or the support of your troops. Your obstinate motivation and your goal-directed mindset in the adversity are the best recipe for the final victory.

I'm going to reset my count of your chemos, as I did when you started your second regimen. For me, yesterday you started Round 1 of Chapter 3. I know you feel all the rounds on you, from the first to the last, but I want to contribute to your focusing on the positive by marking your adventures--or your achievements--in stages. I really hope Chapter 3 will be like turning a completely new page.

A big hug.

have faith

Danda,

It has been a long time since since I have written on the blog. This evening, alone while Jeff is in Chicago for business, I have mustered up the courage to write your something. I realize now what energy it takes to divulge your thoughts and hopes for all to read. Even to be able to verbalize all that is in your head and heart is no small feat. You are a truly amazing woman.

I heard the news of your scans from my mother and have now read your words. The news is a setback and disappointing, but nonetheless it is a speed bump that you must drive over. You will drive over it and keep driving until you hit the open road again where once again the wind will blow your hair.

I wish I had wise words to pass along to you, but I find it hard to articulate them. I am without words so often, but I am full of heart and hope. I share your disappointment. I share your anger at the situation. I empathize with the poor timing of it all. But I BELIEVE. I believe you will prevail; not the cancer.

Belief is a very strong emotion. I will share with you a short, but funny story. I took the bus to work last week when it was raining. An Italian tourist (from Sicily! of course) boarded the bus and said in few words, " I want to walk on the Golden Gate Bridge." After much back and forth over the logistics of it all he boarded the bus and we all reassured him we would take him to the bridge. So up the road we go in the rain while the visitor looks on trying to track where he is being taken. At the top of the road where the bus stop was the bus stopped to let the Italian off. The road was empty and the bridge was hidden behind a hill that stood between us and its red towers. The visitor looked at us and said, "Where? where is the bridge?" We tried explain in bits of Italian and Spanish (I know you can imagine what that must have sounded like!) that the bridge was just on the other side of the hill. He would just have to walk up the road a bit and it would be in front of him. He looked at us and questioned, "This road? There is no sidewalk." We agreed it was a leap of faith to believe that this road would lead to a man made wonder of the world!

The visitor cautiously stepped off the bus and looked at us one more as if to say, "are you sure?" and we all assured him, have faith it is there, around the corner, believe us. To that he thanked us, tipped his cap and we all wished him good luck and goodbye.

You are a lot like that Italian. It is unknown what waits on the other side and when you will see it, but with trust in your doctor, the treatments and all your friends and family you are venturing there into the unknown because you have said your mind to reaching your goal you have set. There is no doubt he made it to the bridge and was proud of the faith it took to get him there. You too should be proud of your faith that will get you to your goal. We are all behind you 100% telling you to go for it. We love you and are right here beside you every step of the way!

We love you! Dad is looking down on you and no doubt saying, " go for it girl, go for it!"

I love you mountains!

Lex

With you every step of the way.

Alex,

I am at a loss for words. I can not think of what to say. Like you, I am so angry at the gross injustice of all of this and for the continued fight ahead and for the cancelled trip to see your beloved nonna. I share in Uncle Geoffrey's conviction that you will get out of this maze. You will feel better. Life will be great again.

And in the meantime, Saul and I send you all of our love and our steadfast belief that you will fight and annihilate this f--k-r. This victory will be yours.

We are with you every step of the way.

Round 16

Alex-
I so appreciate your full, honest story...how you share the heartache and fear and desperation and exhaustion of the news of the new liver spots (I HATE them I HATE them I HATE them), followed up with your usual remarkable return to the ring. Hearing your anger, your determination, your reframes (now this f*&^er is really in trouble because it isn't going to get that break, after all) -- hearing all of that is my own guide to getting through the heartache and fear and desperation of knowing what you are enduring. How remarkable that you continue to offer that to your "troops." I feel like you are the one holding me up at least as often as I am offering something to boost you. I suppose that is what real mutually empathic relationships are all about, what real friendship is about, what real love is about. Thank you for shining your light so bright that it shows me the way through the darkness of this hell you are in from all the way across the ocean. And you know what else you do that is so amazing and so inspirational? The way you find wonder in the little moments, seek peace in the face of chaos, and appreciate what you have despite your pain and your fear -- I want to breath that in and live it for as many moments of each day as I can. I love you so much. I am so grateful for you. I am crying with you, and I am cheering you on to fight fight fight fight fight fight. And I miss you so achingly and desperately and tangibly. Joanne, thank you for your update about seeing Alex. I read it with thirst and jealousy, and I so appreciate you offering what you saw and heard and felt for those of us who aren't able to be there. With love - Lindsay

Tears, Deep Breaths, and Still as Determined as Ever.

Dear All,

I know that you all have been waiting for news of the scans. I have needed 24 hours to “regroup” before sitting down at this keyboard.

Julian and my meeting with Dr. Plowman was emotional. As he ushered us into his consulting room, he shared, “Well, everything in the chest area is “fine” (to be later defined), while there has been some slippage in the liver.” My heart sank and started pounding. “Slippage?” I asked, trying not to cry. Dr. Plowman looked at the radiologist’s report again, and said, “It seems that there are a couple of new subtle spots”. The tears started to fall. “Define subtle,” I asked. And Dr. Plowman said, “Well, let’s look at the scans. Let me pull up both September’s scan and this month’s scan up on the computer and compare them.” Which he did, and there they were: two images of my liver. As he began toying with the perspective, he began humming and hawing, “Yes, well there are the two old areas that we are still dealing with…. but I don’t seem to see the new spots.” Julian was staring at the screen, while I couldn’t bear to look, preferring to listen. Julian then pointed out, “Forgive me, Dr. Plowman, but don’t the two areas in the current scan seem smaller than those of the last scan?” “Well, yes, now that you mention it, they do! I don’t understand this report. I am going to contest it. Sit tight while I go and find the radiologist and review things with him. I will be right back….”

And that is when I started sobbing, and Julian held me close, and we waited. It felt like an eternity. Dr. Plowman returned five minutes later and shared, “Well, yes, it appears that there has been a mixed response to the treatment. These two “old” areas are stable, if not slightly smaller, as you too observed, while there seem to be two tiny new small spots on this other side… you see here?” He indicated what were two, tiny very faint shadows – truly, it was so hard to even see them. He reassured me, “They are remarkably small. That’s why I couldn’t see them without having the radiologist point them out to me. But they are nonetheless there, so we have to change tack.” Basically, as he explained, we needed to nip this “slippage” in the bud. The rest looked “fine” – i.e., was stable. In fact, Dr. Plowman examined me and agreed with me that my lymph node seemed to have gone down even more. So, to recap: over the past six weeks, my breast/lymph node and the two “old” areas in my liver appeared stable if not smaller, but there were these to new worrisome “spots” on my liver. So now what? Change of war strategy. And my heart, again, sank.

Instead of giving me the scheduled “break” from the IV chemo, we are going to be doing quite the opposite. Major attack. Tomorrow I start a new chemo regime: I will be getting two new IV chemo drugs, plus continuing with the IV antibody drug. I asked the dreaded question, “What will the side effects be?” and Dr. Plowman indicated that these drugs are not as strong as my first regimen, but definitely a lot stronger than what I have currently been on. Vomiting and strong nausea are the number #1 effects associated with this new combo. My heart sank. I may need to be hospitalised for a night. Fatigue and lethargy. Numbness of nerve endings in hands and feet. Risk of impact on the kidneys. And when he told me that I may lose my hair all over again, I began to cry – It may sound silly…it is not out of vanity. I just can’t describe what it feels like to be able to look in the mirror and look “healthy”. My work schedule would have to be cancelled/changed. I felt, in a way, like I was being asked to start all over again.

My dearest Uncle Geoffrey sent me the most loving of emails, and in one section, he wrote the following.

“Have you ever been in a maze? I have once. Didn't like it, couldn't see where I was going, wanted out, badly, and I felt very alone as there really was no one to rescue me. I had to find my own way out and the worst part was all my friends were close by and could only yell encouragement. I did get out, eventually, and all was fine.

I can only liken what you are going through to that experience. You keep turning corners, working your way through the maze, only to reach a dead end. You have to turn around and almost start all over again and I know you must wonder if there is an end to this. It is exhausting, depressing, frightening and everything in between.You will get out of this maze. You will feel better. Life will be great again.”

Uncle Geoffrey captured my experience perfectly. I cling to his last three sentences.

So, needless to say, we had an emotional 24 hours, as the news and the implications of the novel “war strategy” sunk in. I have had pep talk after pep talk, getting “prepped” for the next tough chapter of this marathon. I dread tomorrow. I am afraid of the side effects that await me. I grow anxious at the thought of again feeling my body “dying inside”…. that infamous chemo coat…But I force myself to reason through this: I mentalise this as my final push. We have shrunk everything to such a smaller size compared to a year ago. I have made this cancer struggle, I have made it tired. We have chosen not to give it a “break”. Quite the contrary – it is going to be slammed again. There is no stalling, no standing back. One of the drugs I will be getting is the same one that was given to Lance Armstrong – he blasted his tumours to oblivion – now it is truly my turn. While I am so scared and tearful and so drained by all of this, I am also terribly angry. This f*&ker has really pissed me off now. I want my life back. I deserve my life back. I am not checking out of this marathon. I don’t care how uphill it is. That finish line has my name on it.

One of the harder parts of all of this is that we had booked flights to go and see my 101 year old grandmother for a three-night visit in Rome this coming week. She has not seen James and I for a year, and I have been longing to visit her again, and have her see my beautiful James, who is now so much more grown up. She has never been told that I am sick, so as not to distress her, and I know that she wonders why I have stayed away. With my hair grown back and my treatment seemingly tapered, I finally had my chance to go. Not to be. It breaks my heart.

I end on a positive note: yesterday, Julian and I went for a walk in Holland Park with James. It was a beautiful autumn day – clear blue skies, crisp air, and the crunch of leaves under our feet. And I was overwhelmed with gratitude and affection for “my boys” as I watched them both play together. I need them, they need me. Fight the f*&ker, Danda, fight the f*&ker. With everything you’ve got. Round #16, here I come.

Hugs to all.

Beautiful, noble, strong Alex.

It was such a phenomenal pleasure to visit Alex last week and meet the absolutely adorable James. He is a perfect mixture of innocence, energy and playfulness and yes, he has a very resolute streak to him. As I sat in Alex and Julian's lovely living room and watched his unshakable determination to reach the toy just out of reach, I had to laugh out loud. That fabulous Priorelli determination is immediately recognizable (and Julian's good looks, to boot!)

Before we met, I was not sure what to expect from Alex. I wondered if she would be very weak, if we would need to stay inside to conserve her energy for the marathon. To be honest, and in the spirit of truthfulness and trust that is the hallmark of this blog, I feared that I would see Alex as a shadow of her former beautiful, and powerful self. How could it be possible to endure so much physical pain, to experience all the fear and hope endemic in the daily battle against this f***er without loosing a little soul? I should have known better. I should have known Alessandra better! She looked stunningly beautiful despite her very burnt hands and feet. She was brimming with loveliness and energy. Her hair has grown back and is as soft as James's! As we sat in a hip South Ken restaurant eating lunch, I was struck by Alex's innate nobility and strength in face of this crisis. We shed tears and laughed about all of the absurdities of our lives and when it came to saying goodbye, well it was just difficult beyond words. So to my great joy, we met again the next day for another dose! Alex, I love you so much and will carry you in my thoughts until we rejoice together in your complete recovery.

Kaleidoscope

Dear All,

Thank you as always for all your notes, messages, thoughts, and cheers. As I sit here with my trusted cup of green tea (I swear, they should recruit me as an ad campaign for tea leaves galore...), I smile for I feel your "company".

Yesterday was a kaleidoscope of a day....

I had my CT scan yesterday morning, with Julian at my side, giving me affectionate "coaching" as I went through the usual routine. I entered the scan room feeling calmer than normal, not because I was in the mindset of, "I have done this so many times before", but rather because I was thinking, "I have made progress". As the machine started whirring, I again imagined Lance on his bike, with me pounding the pavement in confident strides next to him, and hearing him shout across to me, "You're getting there! You're doing it!" I hear as much as I see my visualisations - they are powerful combinations of images and sound, and I feel them, if that makes any sense. I was doing so well until, halfway through the scan, it came time for them to inject the contrast dye into my vein.... the radiologist, a lovely and warm South African woman, took my arm and commented on the state of my hands and nails ("I have never seen side effects as bad as this before in all my years"), and then proceeded to warn me that the contrast would be very painful. "Why?"I asked, "It's never hurt that much before." And she went on to explain that my veins had hardened due to the amount of chemo I had received and that this was what would make it hurt so much. So I braced myself, and.... F*@K!!!!!!! It felt like someone was taking scissors and cutting my arm open. I breathed and breathed and breathed and as tears flowed down my face, the radiologist softly kept saying, "Just hang on in there, sweetheart, hang on in there..." And I did, and it eventually passed, and then the machine started whirring again, and I was once more alone next to Lance, running with gritted teeth, listening to his encouragement, to my feet hitting the road, to my heartbeat pounding, to my breath....And it was over. Julian was back at my side, helped me get dressed, and we were out of there, knowing that we would be back in Friday afternoon to hear the results.

I went straight to my office, having purposely previously scheduled a parent feedback that morning in order to distract myself and refocus my thoughts away from the scans. As I arrived, the couple were already there, waiting for me with apprehensive looks on their faces. I thought to myself, "I was in your seat just a few minutes before. I relate to that anxiety about the unknown, about fearing what you might find out. Trust me. I will do all I can to take care of you". And so we launched into what became a 3-hour meeting. Intense and emotional, but productive and hopeful. As they left my office, I again thought to myself, "I relate to that experience. Intense and emotional, but productive and hopeful. That was how I started my day too."

Later that afternoon, I did a testing session with a 7 year old little girl. I was feeling tired, and with that, my body began to ache and twinge, fueling the usual nagging thoughts of, "Why is that hurting?!" But then respite came in the form of the ingenuity and joy of this 7 year old, for I was invited to see the world through her eyes. During our session, when I asked her if she knew what she might want to be when she grew up, she shared the following: "I want to be a singer or a teacher. I want to sing lots of different songs and I want to teach all subjects. I love both jobs. But actually, now that I think about it, I know, I know! I could be a singing teacher!!!!! Oh, Oh, wait, I know, I know! I could teach singing lessons and also teach other subjects too!!! And, Oh, Oh, wait, I know, I know! I could teach in the morning and then perform after school! That would be PERFECT!! HOORAY for me!!!!!" With all that exuberance in the room, who the hell could even have time to sense a body ache...? :-)

My mother met me for my walk home, and we slowly made our way there, my sore feet so painfully raw but accepting of my determination to exercise. As I entered my apartment, I found James grinning from ear to ear, and squealing with pleasure as he played. He had developed a high fever a few days ago, and had been feeling awful for a while, poor thing. Typically an active little boy who doesn't stay in your arms for more than a few minutes, all he had wanted to do when sick was to be cuddled, as the picture above shows. He had spent hours in my arms - during the day, in the middle of the night, in the early morning... In those quiet hours, I spoke to him about all the things that we would do together when we were both well, and I told him how I knew that being sick was simply not fun at all, but that he would get better soon. That I would get better soon. And that as long as we had cuddles and love, we'd both be okay. He had hung on tight to me, his eyes closed, making little whimpering sounds, and we both just "were". While I loved those tender moments, it was a wonderful sight to walk through the door yesterday evening and see him bouncy and animated and happy again, fever-free and ready to party. He won our game of tag. For the 100th time.

I drank two full glasses of homemade juice (carrots, apples, celery, broccoli, cauliflower, cucumber, beetroot, ginger, cabbage), and made a huge salad for dinner (lettuce, tomatoes, avocadoes, asparagus, peas, spinach, sliced boiled egg, quinoa, mixed beans), followed by a bowlful of blueberries and raspberries. I went to bed with a cup of green tea, said my mantras, and fell asleep with a photo of James in my hands (as I do every night), and Julian protecting me at my side.

It was a full day. And this morning, as I woke up, I knew that I would be starting this new day with my troops. Tea with friends... in my opinion, there are few better ways to start your day. And so I keep moving forward, one step at a time, one day at a time, with my eye always on that finish line.

Hugs to all.

Forever Linked

I too love the image of visiting the blog being like sitting down for tea with you Alex. As I have told you many times, having tea and great conversation with you is something that I truly miss with you being so far away. However, I want to give you another image that I use to feel close to you on a daily basis.

In 2004, I left Boston to move back to Florida and be closer to my family. At that time Alex, you gave me a pair of earrings, the same ones in the picture above. You told me that the links in these earrings should remind me that even though we would be living in different cities, we are linked through friendship - always. So now, on the days when I long to be close to you my friend and to feel like I am helping you get through this battle, I wear these earrings and have a physical reminder of you with me.

Love you my friend. ~Mary

Bollettino della vittoria

Hi Panda--

Tomorrow is the long-awaited 4th of November, day of scans and new revelations. November 4th is a day where great things have happened in history, and I am sure are going to happen again. In 1918, on November 4th, shortly after the final armistice had been signed, General Diaz gave a now famous address to the Italian troops that were fighting World War I. They had fought for three years in inhospitable trenches (many of which, incidentally, are still visible in the mountains around here) and were looking forward to the end of the hostilities. General Diaz addressed the troops with the following words:

"The war against Austria-Hungary, which the Italian Army, inferior in number and equipment, began on 24 May 1915 under the leadership of his majesty and supreme leader the King and with a unwavering faith and tenacious bravery conducted without rest for 41 months is won.

The gigantic battle, which opened on the 24th of last October and in which 51 Italian divisions, 3 British, 2 French, 1 Czechoslovak and a US regiment participated against 73 Austrian divisions, is finished.

The very rapid advance of the XXIX Army Corps on Trento, blocking the withdrawal of the enemy armies from Trentino, that were also carried away from the west by the advancing of VII army and from the east by the I, VI, and the IV armies caused the collapse of the enemy's front. From Brenta to the Torre with a rush that was halted the XII, VIII, and the X armies, and the cavalry divisions are chasing the escaping enemy far. [...]

The Austro-Hungarian Army is vanquished: it has suffered great losses in the hard resistance in the early days and during the pursuit, and it has lost a great quantity of materials of various types and whole stocks in warehouses. [...]

The remnants of what was one of the most powerful armies in the world are retreating hopelessly and in chaos to the valleys that they had descended with proud self-assurance."

This is known as the Bollettino della Vittoria, and it marks one of the greatest moments in Italian history. Do I need to say what (or better, whom) the "unwavering faith and tenacious bravery" mentioned in the speech remind me of?

I wish you all the best, in a very simple, literal, and true way. I wait every day for your own Bollettino della Vittoria on this very blog.

A big hug.

tea time

Hi, Alex -
I love the image of blog time as tea time with you. I remember how hot you like your tea...I always think of that when I make tea (although I admit I have become a coffee lover, too). :-) I'm struck in your last post by how many times yourefer, often parenthetically but there none the less, to your many weaknesses. I'm so curious what that is about. Is part of this struggle for balance about accepting your own limitations, your own needs, your own human parts? Knowing them and naming them and accepting them is all good...but it feels like you are talking about these things as weaknesses, kinks in the armor, imperfections. Maybe I'm way over-analyzing or projecting, and at the very least i'm probably offering unsolicited therapy. But I can't help it. Having limitations and needs, and being in touch with your own humanity, is not a weakness. It's a strength. It feels like you are in a bit of limbo -- while honoring and working to accept your humanity, I still hear you ultimately judging yourself for it. No? Maybe i'm way off base (Iknow a client who would say it's an affliction of mine today...). And I hope it's not too personal a comment for the public blog. I feel like the blog has become a pretty intimate place. Healing for all of us as we all learn from you and journey with you deep into our own humanity, as well.

Lots and lots of love - Lindsay

AUTUMN'S LEASE

We are almost at the end of autumn in Maine. There are only a few leaves hanging tenuously from my two giant maples. The other thousands race around the property looking for nooks and crannies where they will come to rest and eventually return to the earth as nourishment for next year's fiddle-head ferns. The thermometer outside the dining room window has plummeted to the 20's. Even the morning sun is not strong enough to bounce it upward today. But the sky is blue-blue and the air crystal clear. Far off I hear a gunshot as hunting season has started. There is a flock of turkeys near the barn. They are keeping their heads down as they peck the apples, red and yellow temptations within reach. No chipmunk has shown his head for days near the bird feeder. The field mice have moved in under the refrigerator. I keep catching them - cruel. Why do I bother? I know there will be a herd the minute I shut the door on From Away Farm for the winter. I bother because they have already chewed the fringe off three cotton rugs! The nests must be something out of Elle Decor!
I am headed to San Francisco next week for a long weekend of girl time. Alexis and I will shop for her wedding dress! I am positive that we will stain the samples with tears, mixed perhaps with champagne, but what are you going to do? Bitter and sweet. Make the best of it. Throw yourself at it and you are rewarded with memorable moments. I will take my camera. No, you will not see the dress; just a picture or two of the choices. Tulle, satin, ottoman, lace, organza! What shall it be? Bandeau, strapless, spaghetti straps, v-neck? Flounces, tiers, a-line, sheath? It will take days! If Peter were around, he would hand Alexis the credit card and say "whatever you fancy" and Alexis would dream Vera Wang and settle for a charming, practical, not-over-the-top expression of her true-to-form innately frugal self. She will rock! Blow you away with beauty, because it is not about the dress, but the person who wears it. And wear it she will! Of course, coming anywhere near Danda's dress will be a challenge. It is, by far, the prettiest piece of apparel I have seen in years! But, we will press onward, in hope.
More soon as the sun sets early and it is dark by 4:30. Cocktail time is at 6. That leaves plenty of time to put a thought or two on the blog, eh what? LSC

Halloween

Happy November Alessandra! I love reading your messages and feeling as if we were in the same room, sipping tea and chatting, instead of an Atlantic away. Today it finally stopped raining and I took my mother out for a walk in a soggy, leaf strewn park to lift her spirits a little. Moving home at any age is hard, and she is finding this 'new life style' a challenge, although she has only been here a fortnight. As you can imagine, it is also a new life style for me, and the experience is sometimes frustrating but always enriching. Last night we stood at the front door and handed out candy to Spiderman, Tigger, SaintGirl, Red Devil, and hordes of skeletons and witches. In the distance, I could still see myself as Sylvester the Cat, trick or treating over 50 years ago. I wonder what James's first Halloween persona will be, and whether his proud mum and dad will be growing monster pumpkins and holding neighbourhood carving parties as we did. For me, autumn has always been a time for slowing down and reflection, and never more so than now. I love watching the trees fall asleep, the scent of pine and leaf mould, and the sharp beat of wings overhead as a V of geese heads to their winter playground. So, enough reflections for tonight my dear, sleep well, and continue on your voyage gaining in health, wisdom, and happiness. Te quiero mucho.

Good Morning Alex

As I sip my coffee thousands of miles away from you, I, too, feel connected by reading your blog and hearing your thoughts and feelings...nah, not as good as having you here, but it will have to do for now. We miss you, too.

It has been a pretty fall around here, the leaves have fallen all over our yard, and Vic is out raking this morning. (you're my excuse not to help :). We had our annual Halloween dinner last night that has morphed into a party with my parents, his parents and family, and several brave friends. My parents dressed up as punk rockers...very comical :) I was Octo-mom with multiple baby dolls hanging on me, and Vic was a cowboy attached to a big blow up bull that prevented him from sitting too much last night :) But, it was nice.

Despite this crazily busy time in our lives, it is important to make time for family and friends and to share in laughter if only at ourselves...and we were pretty funny looking!!

Anyway, I'm so glad you got to see Joanne and that soon she will be living much closer to you. I wish I could visit as well.

Take care of yourself as it sounds like you are doing. I'm happy to hear less frustration poked at yourself and more self love and compassionate care. You deserve that - and patience and love will see you through this marathon.

Much love across the miles,
Julie

ps- happy late birthday to Julian!