Saturday, January 31, 2009

Thanks a Million!

(press release from Cycle for Survival)

Memorial Sloan-Kettering’s Cycle for Survival Raises More Than $1 Million to Support Research on Rare Cancers

NEW YORK -- January 29, 2009 -- More than 1,500 indoor cyclists and supporters joined together at Cycle for Survival on January 25 to raise more than $1 million in support of research on rare cancers at Memorial Sloan-Kettering.

The event took place at Equinox fitness club in Midtown and at satellite locations worldwide.

Fundraising surged dramatically just before the event, with participants and donors rallying to raise over $400,000 in the final week. “In the final push, people really came through,” said Jennifer Goodman Linn, event founder and participant. “Cycle for Survival was an inspiring success and an exciting experience -- a day that brought so many people together to support the cause and share their hope for the future. It was truly overwhelming.”

Proceeds from the first two Cycle for Survival events helped underwrite a clinical trial that has led to a new chemotherapy regimen more effective at shrinking tumors in patients with some forms of rare cancer.

Dr. Robert Maki, associate attending physician and co-director of the Adult Sarcoma Program in Memorial Sloan-Kettering's Department of Medicine, acknowledged the need for continued research. “The standard drugs we have used for the first fifty years of the history of medical oncology are toxic and not always particularly effective,” said Maki. “By gaining a better understanding of the basic biology of these types of cancers, we hope to develop more precise treatments that focus on specific targets in the cancer cell...”

more here

more STABLE news

Dear FDA:

We (sarcoma patients) want you to know that in our world STABLE means GREAT NEWS... (open letter to be continued)

Michelle has results from her exams :-)

"Today was my 12th week on the clinical trial for Brivanib. I met with Dr. Maki & he gave me good news that my tumors are stable, there is no change from my last MRI... "
continue here

Friday, January 30, 2009

bake sales help

interview with Dr. Demetri (Dana-Farber) extracted from article in Winter 2008
.... Another clinical trial hurdle comes in the form of funding. Because of its relatively simple genetics, sarcoma is a good model for studying other cancers, and in the past it was studied at a rate larger than the proportion of cancer patients who have sarcoma. Recently, however, the reverse has been true.

“Just when the country stands most poised to take advantage of 50 years of biomedical research, the funding for cancer research generally is decreasing in real terms, and the funding for sarcoma has been disproportionately hit,” Dr. Demetri says. Although the funding cuts are dispiriting, Dr. Demetri is encouraged by the fundraising efforts of the sarcoma community. “We are blessed with patients and caregivers who recognize that there is a lack at the federal level and are stimulating philanthropy to try to fund our field. Bake sales help,” he says. more here

Tuesday, January 27, 2009

Fernanda passed away yesterday. I have been trying to write but I am still too sad and too upset... and I have no right words.

This photo makes me smile. I was at Memorial Sloan-Kettering recovering from surgery # two. My cousin Fernanda knew better than anyone how I was feeling. Besides being a nurse she had been diagnosed (with breast cancer) in the same year as I was. She was also a mother.

This photo was taken in a cold January day in 2002, just like today, but we were younger and still at the door step of this cancer world.

If you look closely you will see what she was doing. Only Fernanda would think of transforming a hospital room into a spa. We laughed when we heard the lady in the next bed asking: what is this smell? There was a heavy nail polisher scent in the room. Ah don't make fun of my hairdo. Fernanda had just helped me wash it.

My cousin was a lot braver than I will ever be. The only comfort I have is knowing that I have her example to follow.

Monday, January 26, 2009

I give you this one thought to keep -
I am with you still - I do not sleep.
I am a thousand winds that blow,
I am the diamond glints on snow,
I am the sunlight on ripened grain,
I am the gentle autumn rain.
When you awaken in the morning's hush,
I am the sweet uplifting rush
of quiet birds in circled flight.
I am the soft starts that shine at night.
Do not think of me as gone -
I am with you still in each new dawn.

Native American Prayer

Sunday, January 25, 2009

Kung Hei Fat Choi

Bom Ano do Búfalo
Happy Year of the Ox

Chinese New Year predictions here

Friday, January 23, 2009

Brivanib or Placebo 800mg

I just took the pills. I took them the same way I do every night, with food and a little after 10pm. Anderson Cooper 360º is on and I am already in bed. My laptop on top of my belly. If this is the study drug I will fall asleep in 10 minutes. If it is a placebo I will write another post tonight ;)

Inconclusive News

Elsa just saw the doctor. She is going on, but since there was some growth and not reduction, she is being randomized. She may be getting the placebo or the drug for the next few weeks.

Still, it's better than getting kicked off. The rate of growth is much less than usual. Usually it is obvious that the drug does not work. In this case, because of the amorphous nature of the tumors and the fact that she cannot take IV contrast, the measurements are hard to take, so that small differences are not immediately obvious. The key is the amount of growth is NOT OBVIOUS.

So we take it the way it must be taken- positively.

Thursday, January 22, 2009

my mom is going to NYC

today my mom is going to NY NY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Tuesday, January 20, 2009

My Super-Surgeon and my Super Medical Student

This was filmed in July 2005, and Maya was only 4 years old. For about a week she had been asking me to take her along to my next appointment at Dana-Farber.

"I have to ask your doctor a question",

she would tell me every 10 minutes for days (if you know Maya you know I am not exaggerating).

So I made sure I brought her with me to the next appointment which was with my surgeon, Monica Bertagnolli. As soon as my super-surgeon walked in the room Maya asked:

"When I grow up, can I be a doctor like you?"

I will never forget that moment. Dr. Bertagnolli left the room and came back with a brown bag filled with medical supplies. Meanwhile I realized that I had my video camera with me and started filming.

Saturday, January 17, 2009


I made broiled salmon for lunch (it was good) and was eating it with Filipa and Maya when Elsa, who had been upstairs resting, came down with cries of pain in her belly and a smile on her face. The hope is that the pain was due to her tumors crashing under the effect of Brivanib- ergo the smile.

I want more pain like this one

One of the signs that the tumor could be collapsing is pain around it. I fell asleep around mid-day with a terrible migraine and then I woke up an hour later with a continuous pain around one of my tumors. The pain lasted 15 minutes.
I really hope that this pain I just felt is a sign that the tumor is starving because Brivanib (BMS-582664) has killed all the veins that supplied it with food.

Friday, January 16, 2009

Odetta (from Maya)

I sing this song in school. Let your little light shine. And I have a freedom song on my blog I hope you see it!

mid-morning habit

beet, carrot (or apple), garlic, flax seeds, water and lemon juice

the pre-operative waiting room

Yesterday I had an appointment at the Weiner Center for Pre-op Evaluation at the BWH in Boston. Don't be alarmed I am not due for another Surgery. All I am having is a Ureteral Stent Placement next week.

Yes, I can't eat or drink after midnight, yes, I can't wear any jewelry, yes, I will have anesthesia, yes, it will be performed by a (urological) surgeon, , yes I'll have to stay in the recovery room for a couple hours, yes, I need someone to drive me home, yes... still I am not calling it a surgery instead I will refer to it as a "procedure" ;)

Despite thinking of it as a simple "procedure," I could not stop the vivid flashbacks when I stepped in the Weiner Center. I felt (particularly in my stomach) all the anxiety that I have felt while in that room. Sitting in a corner of the room where I had not sat yet did not make a difference.

Speaking of surgeries, Duduca (my older brother) who had surgery on his shoulder yesterday is already home and now planning another "Rented Mule Jump." But for a while all the jumps will have to be from his indoor bicycle trainer stand.

Wednesday, January 14, 2009

A photo from the B.C. era

Year 2000.
I remember the day this photo was taken. I was in Bangkok and it was April 13th. It was Maha Songkran Day or the day that marks the end of the old year for the Thai.
My life was about to take a 360º turn but I had no idea. On that day I had a lot of fun with Zé and Filipa (sorry Maya you were still just in my dreams) on the streets of downtown Bangkok.
I looked for this photo yesterday because I was having a Cancer Sucks day. One of those days when I would do anything to get my old self back. I even gave my seven year old permission to post here. I hope I don´t regret it when she starts writing about how messed up my GI track really is ....

The Thai celebrate Songkran (New Year) by splashing water and flour on each other (including tourists). Here are some of my photos of the "water-flour fight". I didn´t take more beacuse my camera got wet.

Filipinha (6 1/2 years)

Tuesday, January 13, 2009

When my mom gets sick

there is something called SARCOMA that my mom got.
When you have SARCOMA
there is something that you sometimes get called tumors.

My mom sometimes does not feel well becuse she eats too much.

When my mom was 34 she did'nt even know what sarcoma was and I am 7 years old and I know what sarcoma is.

Monday, January 12, 2009

Leonard Cohen will be in "my neighborhood"

"See Leonard Cohen and his tour band at this very special concert in New York on February 19. He will play especially for his fans and US media. Later - in April 2009 - his World Tour will continue in the USA and Western Canada".
More at the Leonard Cohen files.

Discover Leonard Cohen!

This time I want to take Filipa, since she has been, involuntarily, listenning to him for 15 years.
Queres ir Filipa?
Warning: until the tickets go on sale, and I get them, you will not hear me talk about anything else :))))

if you are a die-hard fan....

There will be a very important announcement on the front page of
The Leonard Cohen Files ( on Monday,
January 12 at 10 am New York time. Be sure not to miss it!!!
I know what it is, finaly a US tour!!!!!!

Discover Leonard Cohen!

Saturday, January 10, 2009

Lots of love to Viola Davis from Rhode Island College (RIC) friends

"If I can't effectively move people, then I would prefer not to [act]." -- Viola Davis

Viola Davis is the first person I know that makes it to Hollywood and has been put in the "Oscar radar" for her role on Doubt.
Tomorrow we (my friend Zazá and I) will be rooting for her. We have no doubt that the Golden Globe award for Best Supporting Actress will be hers and that the Oscar will follow.

"With a brief but heart-stopping performance in this week's period drama Doubt, actress Viola Davis (Solaris, Far From Heaven) has simultaneously put herself on Hollywood's Oscar radar and achieved what has got to be a near-impossible feat: stealing a scene from Meryl Streep. Although she's wont to modesty where the latter is concerned, Davis will un-doubt-edly remain in the minds of pundits as awards season trudges on
, especially given the film's just-announced smattering of Golden Globes nominations: a Best Supporting Actress nod for Davis, as well as nominations for writer-director John Patrick Shanley, Philip Seymour Hoffman, Amy Adams and Streep ... "(more here)

Tuesday, January 6, 2009

More Good News

R. is participating in the same Brivanib trial and also has a liposarcoma. He comes from Ohio and like many of us is hoping that the four pills, he takes everyday, will end the sarcoma nightmare. Last Friday was the day R. completed the second cycle (six weeks) and got CT scan results.

As I was leaving the hospital, after getting pills that will last me until the 23rd, I saw him. Contrary to the worried expression I had seen earlier on, there was a smile. The same happiness on his wife's face. Shrinkage, they told me, Shrinkage of FOUR tumors!

Four tumors shrunk! Four liposarcoma tumors responded to Brivanib.
Yes, I think this is going to be a happy year.

blogging, brivanib and coincidences

On Friday I wanted to post from 53rd St, but for some reason I could not get to my blog (Maya, the digital native, was able to post from hers). As I tried to get to my blog I found reference to Elsa with a liposarcoma on a link to a blog called Card Blue. Oops that has to be me. Me and my silly posts. I was curious but the computer at Sloan Kettering did not allow me to access the blog.
So when I got home, I turned the computer on to get to Card Blue. But, as it often happens I was immediately distracted and went to another site, this time, the Sarcoma Alliance. I had not been there in a while and to my surprise (and honor) it now has a link to Living With a Sarcoma. Oops.. again a link to me and my silliness ;).
Aha but there it was! Underneath my blog, a link to Card Blue. With a smile I found the post mentioning my stable tumors and Michelle´s. But there were more coincidences. Card Blue was also starting Brivanib at MSKCC. And as I read older posts I realized that we had actually been in the same waiting room at the same time a couple of hours before.
Coincidences. I believe in them.
Good luck. Viva Brivanib.

Sunday, January 4, 2009

resolution #2


Try to run everyday. Goal: beat Speedy the next time we see each other.

This has been one of my new year resolutions for years (Zazá, do you remember the year we ran on New Year´s day?). A difficult habit to start in January when the temperature is -14ºC. Usually by the end of the first week I am ready to forget the dream of running a marathon (ok, a 5K)...

However, this year I have a plan. Check Beginner´s Guide to Running at Zen Habits and be inspired.

resolution #1


Since I am not fanatically devoted to meat or fish I have decided to become a vegetarian (one that eats shellfish once in a while since I can´t give up the crabs my brother Tó makes).

It has not been easy to convince some members of my family to stop giving me meat but here are some convincing facts (YES José Pedro Barbosa Estrela, this post is for you):
  1. Animals raised for food eat enough grain to feed the world.
  2. Eating 1lb of meat emits the same amount of green house gases as driving an SUV 40 miles.