Sunday, November 30, 2008

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).

Thursday, November 27, 2008

When I tried to fall into Kevin Costner's arms

video

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

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

Wednesday, November 26, 2008

Tuesday, November 25, 2008

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!

Sunday, November 23, 2008

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.

Saturday, November 22, 2008

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

Wednesday, November 19, 2008

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.

Tuesday, November 18, 2008

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.

Monday, November 17, 2008

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.)

Sunday, November 16, 2008

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.

Friday, November 14, 2008

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.

Thursday, November 13, 2008

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.

Tuesday, November 11, 2008

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.

Sunday, November 9, 2008

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!

Friday, November 7, 2008


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.

Thursday, November 6, 2008

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.

Wednesday, November 5, 2008

welcome back
American Dream

Tuesday, November 4, 2008

Saturday, November 1, 2008

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.