Bom Ano

Have a Happy
and Healthy
New Year

The Road Not Taken

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.

Robert Frost

Planting crocus in the end of December

Mother Nature gave me a second chance! All the snow we had last week has melted and the ground is NOT frozen (It is 14 C)! So guess what I did this morning?
:)

To Kathy

(shout out to a new sarcoma friend)
Good Luck with Brivanib!

One more reason to celebrate

More GREAT news.
Brivanib is also working on Michelle´s tumors!
YES!!!

We Wish You a Merry Christmas

Rudolf the red-nose reindeer+Maya+Filipa

O Nevão

que foi encomendado para a Pipocas.
You might not know it, but the last snow storm that hit the Northeast was especially ordered for the girl in red. Filipa flew from Porto to New York to spend 3 magical days with us.

À tua, Filipe!

To Filipe who flew Pipas to us

Adorámos, foi a nossa prenda de Natal. Obrigada Filipe!
... e já sabes quando quiseres vir à província, nós estamos cá.

Us in 1976 (77?), Taipa, Macau. Video of Our Street
(coloquei o video da Nossa Rua no youtube)
Left to right: Pipas, Duduca, Luisinho, Carla, Alex, Tó e Elsa

Chegou o meu raio de sol

My sunshine just arrived from Porto!

Holiday Cheers at Dana-Farber

Written by ze

Friday, 19 December 2008 08:17

Yesterday I went with Elsa and Maya to Boston (Filipa was in school). Elsa had a doctor's visit at Brigham and Women's Hospital so she stopped by Dana-Farber, next door, to say hello to her doctors and the nurses that take care of her. Her team, as she calls them. In the lobby, where I waited for Elsa and Maya to make their rounds, the "Friends of Dana-Farber" were handing out cake and juice to passers by. I took out my journal and jotted down how eight years ago, I think exactly to the date, Elsa and I were seating in that same lobby, Elsa showing her nervousness, me trying to hide mine, while we waited for her doctor's appointment. The Friends of Dana-Farber were handing out cakes that day, and we found it strange and wonderful that they were doing so. The warmth emanating from Dana-Farber was certainly a stark contrast to the cold, mediaval, draconian vibes exuded (with exceptions, of course) by the Centro Hospital Conde São Januario, in Macau, where Elsa had recently undergone six months of what turned out to be ineffective and inappropriate chemotherapy. Eight years! Maya wasn't even born then. We were living in exactly the opposite part of the world. So much has happened in that time span. Thinking back on all the moments of uncertainty, the gut wrentching decisions we had to make, I have to say that it feels good to know, that it always helps to know, that Dana-Farber is there, with the same welcoming attitute, the same willingness to care for the people who trust them to do so. But what really struck me, as I sat at the lobby, was how time has not changed Elsa's desire to fight on. How after eight years, she still maintains hope and the willingness do offer her self to the scientific search for the means to fight her cancer. I know her attitude has helped many people, including her self. I know that when a cure, when the means to stop liposarcomas is eventually found, she will have played a role in it. And hey, it's the eight Christmas since she found out she had cancer. Is it coincidence that it is the one where she had good news? Maybe the Chinese are right. The is such a thing as the lucky number 8.

-------------------------------------------------------------------------------------------
My Dana-Farber

Every year, a week before Christmas, someone who had a family member treated at Dana-Farber serves all sorts of Holiday goodies to everyone passing by the Dana-Farber lobby. Today when I went to DF (just to hug my team) and I saw the Friends of Dana Farber volunteers distributing smiles, cakes and Happy Holidays wishes, I realized that my first visit to DF was exactly eight years ago.

Eight years ago, I was sitting in the same lobby, nervously opening and closing the Boston Globe, without being able to read it. I had come to the United States, all the way from Macau, just for a consultation with Dr. Morgan and Dr. Singer. At the time, I remember asking the receptionist if the Institute was like that everyday.

"The free cake is only once a year, but the hugs are free and abundant all year long," she said.

Thanks for the hugs. They make infinite difference.

YES I DID IT

Ok. Now I consider myself a gardener.
Branch taken from a Rose Bush (Jardim da Princessa Sofia) in Syracuse, NY
Mª João, Carla e Rita olhem só, pegou!

My girls

Filipa, Gabi and Maya wrote in their blogs about my
S T A B L E tumors.

A poem from Filipa


A song and post from Gabi

We are so happy
Today it rained like crazy! There was this HUGE puddle in front of my house. It looked like a pool! At night my dad had to call the the fireman to pump out the water in the basement. My mom had a flat tire but we didn't want to walk though the flood... Congrats TT Elsa! My mom and I are so happy.

News report from Maya
IHAVE GOOD NEWS
I have good news for my intiere famaily! My moms' tumers are not groing too fast. I m' so happy!

What Wonderful News

My tumors are stable. Wake me up. I must be dreaming!

Better yet, our tumors are stable. Iris also has a retro. liposarcoma and we started Brivanib on the same day. We have been treated by the same teams, in NY and Boston. And today we both heard good news.

Yes, stable is wonderful in the sarcoma world.

Going on.

So we are at the Sloan and for the first time Elsa is going on past the six week mark. Although it is hard to measure her masses, so that some appear to have shown growth and one shrinkage, the over all growth was around the 10% mark, thus below the 20% treshold, which is the amount of growth where the tumors are considered stable.

In other words, the news is good. No new tumors and overall growth less than 10%. It's Christmas time and we are happy.

The doctor was also happy. She is clearly amazed that Elsa shows no signs of ill health and feels positive and good, take away the normal fatigue. The doctor decided to give Elsa a little iron transfusion to see if she can feel even less fatigued. A good thing since she has friends coming over for lunch on Sunday (i.e. I won't have to do everything. Eh, eh, eh).

I'm probably mumbling but I am also feeling very happy and ecstatic that she is going on. In another six weeks they will check again and hopefully the news will be good again.

It's been a long day, but with news like this, it does not matter.

Elsa was also happy this morning when Iris, who started her treatment on the same day as Elsa, also received news that her tumors were stable.

So onwards with the fight.

Cheers,

Z

Misremembering

Did I say that I am no longer nervous before my CT scans? By misremembering I was purposely trying to make my brain think that way. Think that it is no big deal. Think that is OK if the drug does not work on me. Think that other ones will come along.
But the CT scan is tomorrow and of course I am anxious. This is a "nice" clinical trial to be on. It would be wonderful if, for a change, this one caused an Apoptosis.
I'll post the results of the scan tomorrow, as soon as I can.

Poll closed ;)

Rui has ended our little argument on Facebook:

Rui Manuel Pereira (Toronto, ON) wrote
at 12:57pm on December 8th, 2008
Aqui está a prova que esta era a sala de quimíca. Tabela periodica á esquerda do Paulo Parracho!!!!!


Agora sabemos quem NÃO estava a dormir na aula de Química
:)

Running

I ran today. My nose is still frozen but it feels sooooooooo gooooood. Yes, I picked the coldest day to start running (It is -10Cº or if you prefer 14 F), but Zé bought me a new pair of running shoes. I love them. You know how a new pair of exercise shoes feels like. We believe we can fly.
Since the cold was sent by mes amis Canadiens, here is a post dedicated to Speedy
I ran for 15 minutes and this is what I listened to:

(música di nha terra/music from my Cabo Verde)

CAT/TAC

(foto do Joid, Macau 2001)

It has already been five weeks since Halloween and since I started my latest trial. Next Friday I'll do a CT scan and we will find out if this study drug is working.

I always prepare myself for all the possible results. I activate all my self-defense mechanisms a week before the scan. I want the scans to show tumor shrinkage. I hope for that but I am ready for any other results.

When I heard of my first recurrence, in 2001, in Macau, I was so scared that I literally felt the ground collapsing underneath me. That is how it feels when one hears of the first recurrence. It is different than hearing about the disease for the first time. It is worse, I am afraid.

The day of the scan was always full of drama. Crying, I used to call my friend Mário (who happens to be a doctor) to ask him if I could add whiskey to the awful CT scan prep drink. I hated the whole process of being scanned. The before/during/after anxiety that always accompanied the exam was just as bad as "that drink".

I never imagined that the day of the CT scan would one day become routine. I still hate the taste of the drink but I stopped making a fuss. I still want the scans to say that the drug worked but all the anxiety is gone.

Ah in case you are wondering if you can add Whiskey to your contrast drink, Mário´s answer was: NO dear, you can NOT add Whiskey :))))))

just because...

I am in the mood for Nouvelle Vague Cinema.

oops

The crash ;)

Time Freeze

Time Freeze in Leal Senado, Macau
I am not going to attempt to describe what I felt when I watched this video. Five minutes to melt my frozen emotions. I saw some friends (Jessica vi a Martinha!), I saw familiar faces and I even saw my shadow.
Congratulations to all participants and production team.
Filipa e Nuno, adorei as imagens. Paulinha, obrigada pelo link.

Here it is

The Rented Mule Jump. See the the things you learn in this blog?
This was a successful Rented Mule, the one that resulted in a dislocated shoulder was bigger :) according to my 10+35 year-old brother.

(Speedy I have a message from Duduca, better not write it here ;) ele falou em alguem "levar porrada")

for those of you who know my older brother

or understand him :)))))
I do ;)

Duduca e a sua bicicleta (mountain bike)

O Duduca é o número 10 (karting, my brother is number 10)
By the way, Duduca has a dislocated shoulder from trying to do some jumps with his bike :))))))))

BABY

Yesterday I saw Baby. Initially, she ignored me. Surprisingly, she did not get her nose under my shirt. She complained when I arrived but then she calmed down.

All right. I´ll rewind since I never told you about my relationship with Baby.

Baby is Gabby´s dog. Gabby is the daughter of my BFF Zazá (Maya just taught me what BFF stands for ;)). Baby hates me, or so I thought. To no avail I have tried to pet her in the last four years. I grew up with dogs. Dogs always liked me. Why is this cute Maltichon (cross between Maltese and Bichon) agitated when I am nearby?

In June, a few weeks before my June surgery I was even tearful when I told Zazá, that I was beginning to think that dogs didn´t like me anymore (one of those moments when I want to return to my life Before Cancer -B.C.). It wasn´t just Baby. My neighbors dogs bark every time I pass by. They do not bark at my parents, my aunts, my daughters, my husband. Just me at me.

Fifteen days after my last surgery I visited Zazá. I found a different dog. There was no barking, no agitation, hardly any sniffing. Baby even slept with her head on top of my belly (where is the camera when we need it?). She napped on top of my recently cut/super-glued abdomen for the entire afternoon.

That´s when we realized that she probably could detect my tumors. Since Dr. Bertagnolli had just debulked me, she did not have anything substantial to sniff and bark at. Instead she was sleeping on top of my belly. She liked me after all. It was the tumors she hated.

After that Zazá and I started putting the pieces together. My friend recalled other instances when other people came to her house and Baby was restless. We searched for cases of dogs detecting tumors and found out that there are cases where dogs smelled cancer in their owners before the exams. Some dogs are being trained to detect cancer. The net is full of these stories.

So yesterday, I was curious to see how Baby my other "radiologist" would react when I went to Zazá's for dinner.

Exam Report: She barked, but not as much as usual (good sign). She sniffed me and then left me alone (great sign). I tried to get her to sleep next to me but she did not go for that (oh, no tumor collapse yet).

Zé took this photo of my visit to Dr. Baby, yesterday. Even though she is not napping on my lap, this is a special moment. She is relatively calm next to me.

Hey Baby, this one is for you (Gabby told me she jumps when this song is played).

When I tried to fall into Kevin Costner's arms

...and when Sofia "stole" my microphone ;)

(back by popular demand, this clip is from the time I was a TV reporter in Macau)

No man is an island

Zé wrote a post about how much fun it is for the girls to stay behind with tio Armindo and Tia Didija and about how we get to be spoiled by tio Jorge Pedro and tia Maryanne when we are in NYC. He also wrote about the "mini-convention" of Retro Lipo Travellers that took place in the treatment room last week. The liposarcoma stories that were shared, were nothing more than stories of hope. Two topics, I wanted to write about, but since, as always, Zé wrote it a thousand times better, I am just going to copy/paste from his blog.

Elsa's Drug
written by Zé

For the past few weeks, as those who check Elsa's blog know, Elsa and I have been traveling to New York City, to Memorial Sloan Kettering Cancer Center, where she is trying out a new drug. The traveling back and forth has been very tiresome, but hopefully worth it. She has found three other people that are taking the same drug. One lady has almost the same history as Elsa. Apparently there is a lot of hope and expectations riding on this drug. There are quite a number of people taking the drug, because it worked so dramatically on a patient who happened to have a liposarcoma, just like Elsa. Every time we go there, we hear of more people getting on the drug. They are all very hopeful people who have made a very calculated bet on science. They all have stories of struggle against this horrible disease, but they all share a common attitude that science will come up with a solution to their problem. I, for one, believe this is the correct attitude and have always encouraged Elsa to approach her battle this way.

But even if it is tiresome and sometimes stessful, like when I have to deal with NYC traffic, these trips have also had their moments of fun. Every week Elsa and I stay overnight at my uncle Jorge Pedro's and aunt Maryanne's house were we are pampered and regaled with stories like only he can recount.Tios Didija and Armindo stay with Maya and Filipa, at our house, while we are away, which I think is also a joyful time for them. Although it is a difficult ordeal to go through, our family has been supperb to us in helping us deal with it. I am reminded of the Donne poem: "

No man is an island, entire of itself
every man is a piece of the continent, a part of the main ...

Indeed!

recaída

Tive uma recaída. Não estou a falar da minha saúde ;) pois continuo forte como um touro. Estou a falar do Haruki Murakami. Nao, nao estou a reler South of the Border, West of the Sun. Faltava-me devorar o último livro, What I Talk About When I Talk About Running, a memoir. Entretanto descobri um blog onde os fãs do Murakami podem fazer detox ;)
Sim, Michael Salty estou a falar contigo.
Beijinhos
P.S. Nao me mandaste a tua playlist por isso estou a preparar the Murakami Mix.

(I don´t know why I ,wrote this post in Portuguese since half of the words I used are in English :)))) But as you can see I am talking about one of my favorite authors, Haruki Murakami).

Rita querida, compra este livro e oferece-o ao Rui, diz que fui eu :)))). Ele vai gostar. It is just like his blog.

Yesterday

Our smiles reflect what was going through our hearts. If you read the comments you will see that we only met last week, through our blogs. I found Michelle´s blog when I searched Brivanib (on google blogs). So, as you can imagine, we were excited to meet in person. On top of all, we have Doctor´s visits on the same day, same team at MSKCC.

If you have a sarcoma you know that it is not often that you bump into other sarcoma patients (sarcomas are one percent of the adult cancers and there are over 50 types). Even for those of us who are lucky to be treated in a sarcoma center it does not happen that often. First of all because we do not go around the waiting room asking: what do you have? what drug are you on? Also our doctors and nurses don't tell us: see that other patient over there, he has the same thing as you. There is something called patient privacy.

Anyways, there was more than one reason for Michelle and I to be smiling. We were smiling not only because we liked each other immediately and because we really know how the other one feels. We were smiling because when Michelle was driving to MSKCC, something wonderful happened. She had a terrible pain and horrible nose bleed. Yes, in our world we celebrate these things ;). Michelle's sarcoma tumors are located on her brain. What happened yesterday COULD mean that the drug is working and one of the tumors COLLAPSED. Read more about yesterday in Michelle´s blog.

watashi wa watashi wa, watashi wa ...

Speedy, estavas a falar de quando víamos a Tim Tim?
Carla e Pipas, este post é para recordar os tempos em que cantávamos em japonês ;)
waratte waratte, waratte CANDY
nakibesou nante SAYONARA ne,
CANDY CANDY

Love is all you need

Without it, I wouldn't be able to go through 8 surgeries, 10 clinical trials and 16 months and 6 weeks of conventional chemo. Without what I call amigo-terapia. Translated literally from Portuguese it means friend-therapy.

I have written a few articles about my liposarcoma journey. I talked about the medical aspect of life with cancer. I have tried to, indirectly, give hints of how I am spoiled by my compassionate medical team and by those close to me. Yet I have never attempted to write about my trick to go through all this without losing hope or, as a friend recently said, my smile.

Right from the start, in April 2000, when my doctor and friend, Paula Pimenta, found "the large mass," lots of amigo-terapia started pouring my way. Untiring friends (family included) immediately formed an incredible support system. A system still in operation 8 years later. A support system that has only grown bigger and now also includes blog friends.

The positive aspect of having cancer (oh, I know, it is a cliché) is that it lifts the fog and we can suddenly see clearly. We can see why we are here. We can hug complete strangers for no reason. We can see that love is all we need.

OK enough ;)

I really just wanted to do a post to thank everyone for all the wonderful messages, I have received but not answered. This time I can blame it on the study drug since it makes me sleep during the day (and spaced-out when awake). Yeap, I can blame it on the "fantastic pills." Check Michelle´s blog.

Tengo Que Bailar Toda La Noche?

As you might have suspected, I am one LC's die-hard fans. I thought I knew and had ALL of his songs.
Well, I just found this rare song. Here is the link to
Do I Have To Dance All Night?
Listen to it even if you are not crazy about my Leonard. I think this is a great one. I found it in this blog One Heck of a Guy ;)

Rui, aposto que a tua playlist nao tem esta ;). Tens mais aqui.

S.O.B.

I am not swearing, I swear.
S.O.B. is the medical abbreviation for Shortness of Breath, one of the side effects I have been feeling. I hate it. It is interfering with my gardening. I know the growing season is over but I still have a lot to do before Winter sets in. I want to plant garlic, more tulips, crocus and hyacinths. I just wish the S.O.B. would go away.

This is my "joseph's coat" climbing rose yesterday before I pruned it. If you are not a gardener you might wonder why do I spend so much time digging the soil or cutting branches. The answer is: for my sanity.

(Michelle,
I can't wait to meet you in person this Friday. Are you also feeling Shortness of Breath? I feel it when I bring the laundry basket up the stairs and when I garden. It has not stopped me from walking in NYC though. If you feel up to it we can take a walk between blood draws.)

A VOZ DA SAUDADE

Acabei de ver A Voz da Saudade, um documentário de Joaquim Vieira. Se nao viram, quando passou na RTP, nao percam.

Querido Joaquim, ainda estou emocionada. Adorei. Obrigada pelo link.

from 53rd St

I am already feeling mental confusion so I better not write anything, but Ze and Maya have updated their blogs. Don't miss Ze's post it is called Murder in New York.

Van Gogh and the Colors of the Night
Through January 5, 2009 at The MoMA

You can view the exhibition online or go with me tomorrow ;)
MoMA is also on 53rd St, just a few blocks from Sloan-Kettering.

BMS-582664

I wish I had a "Shapirogram" to explain how this antiangiogenic drug works. But since I don't, I am going to tell you how I remember it explained to me when I was on a similar drug, XL880.
Cancer cells in a tumor need blood to supply it with oxygen and nutrients to grow. The idea is to starve the tumor by blocking blood vessel formation. Imagine a war won by attacking the trucks that carry the food supplies for the enemy troops (here I go again with the military metaphors).
Starve the tumor. Just imagine...
OK I am getting off the computer. I have to take my 4 pills and I still want to plant 100 tulips today. More on Antiangiogenesis here.
(Filipa took this photo inspired by Dr. Eder's photo, the one he is holding the Avastin box. By the way, my fingers are red because I was cutting beets).

Fighting Cancer With Your Fork

Good advice from Stacy Kennedy, my nutritionist at Dana-Farber.
To listen click here. To read click here.

life without black pepper

When the nurse told me that I could not have any black pepper while on this study I did not imagine that it was going to be quite a challenge.

Can you tell me if this Shrimp and Spinach Salad has black pepper?
I can ask the cook to do it without the black pepper.
Thanks.
(food comes) It has no black pepper, right?
Yeah. The cook told me he did not put any pepper.
(shrimp is covered with black powder, still I put one in my mouth)
Arghhh pepper. And it tastes like black pepper. Zé Try one.
Oh yes. This has a lot of pepper.
(waitress comes)
I asked you for no black pepper. I can´t have any, not because I don´t like it, it is for health reasons. Not even a little. And this dish is loaded. Maybe the cook heard extra pepper...
(Waitress takes back my plate back and then returns with a plate of boiled shrimp on top of Spinach). Sorry there was some miscommunication...
It's all right.
(Waitress leaves and I try one shrimp)
Arghhh now it is tasteless. No wonder Vasco da Gama did not rest until he reached Calicut.

PARABENS FILIPA

15 years ago
Video coming soon. When I figure out how to digitize video 8 footage.
Belaaaaaaaaaaa preciso da tua ajuda!

I am back home. Two hundred miles (320km?) separate my house from Sloan-Kettering. Next week the girls are going also. It´s just too hard to enjoy Manhattan without them. Especially when you run into camels.

Apparently we also ran into the Secretary of Homeland Security... but that´s another story. I´ll tell you tomorrow.

Maria Tonta em Nova Iorque

I completed the first week of Brivanib and I must say that as far as chemo drugs go, this is one of the "nice" ones. Hard to believe that I did not need Zoffran (anti-nausea). The only side effects I felt were dizziness and fatigue. The Protocol is not bad either. I only have to come to NY once a week.

The Turmeric Girl

I often return to this moment. To the girl selling tumeric on a street of Bhaktapur. I only took these two photos. I wish I had taken more. As I walked away from her I kept looking back. I remember telling Zé and Filipa to notice the girl, the tumeric and the gray tones that surrounded her. There was harmony between the cool and warm colors.

I am talking about this beautiful girl I saw in a street of Nepal in 1999 because I add turmeric to almost everything I cook. Turmeric (cúrcuma longa) seems to be a great anti-cancer spice.

um poema da Filipa

Life and Adventure are waiting.
by FE, November 3, 2008

Adventure awaits in a hidden place,

that can only be reach through dreams.
It draws you towards it,

like an unstoppable magnet.
Your soul yearns it,

your heart aches for it.

Dreams are waiting to be fulfilled.
Stories are ready to be finished.
Songs are prepared to be sung.

Go forth, go far,

travel the world.
Imagine the things you could learn,

the things you could experience.
Life will not come to you,

you must go to Life.

read more in Filipa's blog.

welcome back
American Dream

How to Vote - by Maya

(Maya wrote and read the text)

No black pepper?

Yes. No grapefruit juice, no orange juice and no black pepper with this study drug.
Four 200mg tablets by mouth. Once a day. The name of the drug is Brivanib. The name of the clinical trial BMS-582664.
Now we just have to keep our fingers and toes crossed. For all liposarcoma patients and for me.

Dear Maura

Besides missing you terribly it was not so bad.
Zé took this photo in a restaurant in Little Korea. I had a four hour break between two blood draws so I walked from 53rd to 32nd. Not bad for a first day of a study. I am already home. Hard to believe that New York is suddenly so close.

(Maura is my dear Research Nurse at Dana-Farber)

Capítulo 4: O mito de Sísifo

"No último capítulo, Camus esboça o mito de Sísifo, que desafiou os deuses; quando capturado sofreu uma punição: para toda eternidade, ele teria que empurrar uma pedra de uma montanha, até topo, a pedra rolaria para baixo e ele novamente teria que recomeçar tudo. Camus vê em Sísifo o ser que vive a vida ao máximo, odeia a morte e é condenado a uma tarefa sem sentido, como o herói absurdo."

"posted" pelo meu amigo Miguel S.
(Miguel, desculpa-me mas nao resisti e estou a "postar" por ti)

All the way from Virginia

they came and just to bring a smile to my face.
Thank you Carmita.

Massimo Vignelli recently updated his 1972 iconic New York City subway map.

Yesterday morning I took the Lexington Ave (green) line from my uncle's house, got out in Grand Central (42nd) and walked 10 blocks (on Madison Ave). There was a stop on 51st but I wanted to walk. In the afternoon I took the E (blue) line from MSKCC (53rd) to Penn Station (34th) where I took the the 5h40 train to Providence. I'm posting these notes and Vignelli's map because I know I'll need it when I get "mental fog".

another one

oops I wrote all over this blog that I was going to start R7112. It turned out that I signed a protocol for another study drug. I am not even going to talk about it yet. It is better to wait for Friday, when I am scheduled to start the trial.

from 53rd St

I am on the 5th floor of the Rockefeller Outpatient Pavilion. It is raining. I am glad it is raining. This way, I don't feel bad that I can't go for a walk on 5th Ave.

The waiting room is packed. It is a good sign, I think. It is a sign that we are surviving. Or is it a sign that too many of us have cancer?

I just did a CT scan and now I am waiting to see the doctor and sign the protocol. I must tell you that I behaved and I drank all, well almost all, the contrast bottle they gave me. I drank something called Raspberry Ice Crystal. It tasted better than the Berry Smoothie.

The wait seems to be long for everyone. I hear some patients complaining that they have been waiting for two hours. Today must be one of those crazy days. But can you believe that there are computers with internet access for patients in every (except the 8th) floor? Not bad.

Maya e Cláudia

I just voted

I have been so busy trying to arrange everything in order to start my next trial in peace that I forgot that I would be away from my home state on Election Day. It was only when I heard that November 4th was probably my first day of R7112 that I panicked. I thought that it was too late for an absentee ballot.

Still, I decided to call the Elections Commission in my town. It turned out that casting an absentee ballot is a lot easier and faster than I thought.

The whole process took me 15 minutes. I drove to the Town Hall. I filled out an application for an absentee ballot. The clerk gave me an absentee ballot. I voted. I gave the sealed envelope back to the clerk. I Drove back home.

I didn't even use the "cancer card."

cancer metaphors

Journalists use military metaphors when they talk about cancer. You read it on the news all the time. There is a war on cancer going on, at least since Nixon declared it. In this war, cancer is the enemy. Tumors are targets. Doctors generals. Chemotherapy, radiation and surgery are the weapons. I guess nurses are the soldiers and the war strategists are the scientists who develop the new drugs. Our care givers are our allies.

We, the cancer patients, are often described as (war) heroes, victims or survivors. I would say that we are more like Prisoners of War. At least that is what I feel like sometimes.

Even though I have also used these war metaphors, I am not sure they fit.

Often my friends describe me as a hero, a warrior or a fortress. With such kind words, they give me strength, that's true. How can I disappoint them?

But I am not a hero. And I certainly don't feel like one.

Pronto, já passou ;)

It is true, I had a stressful week and it turned out that it was all due to a computer error.

To make a long story short:

The office of my oncologist at Sloan-Kettering (MSKCC) wanted to schedule my appointments (to sign the protocol, CT scan, etc) but MSKCC Financial Services had my account "on hold." The account was "on hold" because they claimed that they had not received any authorization from my insurance. On the other hand, my insurance guaranteed me, every time I called, that they had sent the authorizations/referrals to MSKCC.
I was caught in the middle of this, along with the secretary at my primary physician's office who was trying hard to help me out. I could see that it was obviously a communication problem. If my insurance and the hospital spoke to each other directly they would resolve everything. However, whenever I tried to give the name and telephone number of the person in charge of my case at my insurance to MSKCC Financial Services, they would just cut me off saying: "No we don't want the number, you can call them and tell them to fax us the authorization" or "we'll call you back." I guess it must be a New York thing or perhaps I have just been spoiled by all the attention they give me at Dana-Farber, but the end result is that I became really frustrated.

And this went on for six days.

When a patient advocate from MSKCC called me on Monday, I had reached my limit. I raised my voiced when she kept telling me that my insurance had said NO to my authorization request. I know that, unintentionally, I yelled the name and phone of the person in my insurance that they had to talk to, so she had no choice but to write it down and call my insurance and that's when we all found out that there was a mistake in the system. It turned out that every time the hospital called the insurance a recording would say: "patient has exhausted the authorization." But they never talked to anyone directly.

Patient IS exhausted! That's what I would say. There has got to be a better way to resolve these types of issues .

At last, however, everything got resolved. All it really took was, in fact, a phone call from MSKCC to the insurance person.

I'll sign the protocol on the 28th after doing a CT scan and then start the treatment.

It is a beautiful Autumn morning and what I really want is to go for a walk... but I must stay close to the phone. I must wait to hear from NYC. I must wait wait wait wait wait to be told when I can start. Come to think of it, cancer patients do a lot of waiting. For the last two months I have been basically waiting. I should have bought an around-the-world plane ticket...

In the beginning of August I asked my Health Insurance for an authorization to allow me to start the R7112 clinical trial at MSKCC, a hospital outside my network. This trial from Hoffmann-La Roche is only offered in 3 states: Colorado, Texas and New York. I confess that I did not have a lot of faith in my HMO. I was basically waiting to hear a NO. Once I heard a NO I would appeal. With my cancer curriculum I thought it would be easy to show the health insurance that they will benefit if I find a treatment that works... and so I continued to wait for the negative answer in order to appeal. I waited all of August and all of September.

When I gave up waiting to hear from my insurance, as I was ready to start STA 9090 at Dana-Farber, E. from my primary care physician called.

"Elsa they said YES you are all set to start the trial in NY."
"MY insurance said they would cover the costs?"
"YES."

Coincidently at the same time the oncologist from Sloan called to let me know that there was an opening in the study... (yes we also wait for a spot on the trials)

I told her I was ready to start immediately, my insurance had said YES.

You might ask why I am still waiting, why I am still at home. Why haven´t I packed? . Why am I still gardening and thinking of walks?

That will be the next post. Right now I am going to take a walk and forget the phone.

Now can I convince you to come for some tea?

lemon verbena

It is that time of the year

... when I want to bring the garden inside.
Obrigada Zé

lemongrass, thai basil and parsley

"Now the flames they followed Joan of Arc..."

Encontrei. Agora so estou à espera que o Rui escreva a carta de recomendaçao!

I found the place where I want to stay in New York City. It is a nunnery called Jeanne D´Arc. My friend Rui, who knows me since I was 10 years old, says that they will not accept me there ;).

My long and "bery" sweet break (since surgery in June) is coming to an end. I spent the Summer preparing my body for the upcoming combat (with a balanced diet, exercise and relaxation) and now I am ready to return to the battlefield (this time in NYC). The Hope is that R7112, my new weapon, will target the MDM2, and get my wild P53 to work and kill my cancer cells.

:))) this is how I understand the Nutlin-MDM2-p53 diagrams my oncologists, Dr. Jeffrey Morgan and Dr. Geoffrey Shapiro, patiently drew and explained to me.

useful links

when you have cancer treatment far from home:

New York City
Miracle House (you need a caregiver staying with you and book a month in advance)
ACS-Hope Lodge, Jerome L. Greene (you must be referred by your medical center's social worker)
Sloan-Kettering Accomodations (more expensive than the hotels I can find on Hotwire)
Joe's House Lodging Guide for MSKCC

Boston
Hospitality Homes
AstraZeneca Hope Lodge (opening November 2008)

Across USA
National Association of Hospital Hospitality Houses Inc.
Joe's House
American Cancer Society Hope Lodges
for children: Ronald McDonald House

for me this is poetry

Shapirogram


Morgangram

first (50) days

Para ti Maya.
For Maya, who taught me to live
one hour at a time.



(Everyone knows that Maya is really spoiled by all of us...
this video, of her first 50 days, might reveal why we just can't help it).

o blog da MINHA Pipókicas

Tan ta ta tan
atenção blogoesfera chegou quem fazia falta. Sim estou babada. Emprestas-me um babete?

Filipa, my 14 year old baby, the true writer/artist of the family, started a blog! Here is the link for FE's Art

ANTICANCER

"helping our body fight as well as it ever can"
David Servan-Schreiber

speaking of garlic

... some of my friends remember that last October, I was busy planting garlic. Well... here is the fruit of my labor. Now I have no idea what to do. Let it dry before eating it?

secret ingredient: lemon

I added lemon to my morning beet/carrots/garlic juice and it was simply delizioso.
This new tip, to add fresh-pressed lemon juice, came from Italy. From someone who found my blog when searching the effects of garlic on certain types cancer. So it is true, I am the garlic girl :))))

Grazie Dino!