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 :))))))))