living with a sarcoma

Lhasa's music

2010-01-06T12:57:00.008-05:00

It was 21 months ago that I did my shaving-head video and used Lhasa's music. With the news of her premature death on New Year's Day, I found out that she was diagnosed with breast cancer exactly 21 months ago. It is a sad coincidence and I wish the end of her battle with cancer could have been different.

Gracias Lhasa. More about this great singer-songwriter here.

a post for Rajiv

2010-01-04T19:25:00.022-05:00

Rajiv
I don't know anyone else on R7112, so I am glad you found me through my blog. I just completed the fifth cycle. I take a daily dose of 1270mg for 10 days, and then rest for 18. Did you start the trial after me? My first cycle was terrible but the last one did not feel like torture. So the good news is that it eventually gets better.
I have the same side effects you talked about: GI track discomfort, nausea, lack of appetite and taste changes.
My secret weapon to fight nausea and taste changes is ginger (like the ginger slices served with sushi in Japanese restaurants). Got Hope, a friend I made through this blog, gave me this precious advice. I eat it with every meal and also in between meals.
The other trick is to avoid having an empty stomach. When I don't eat or drink not even the anti-nausea prescribed by my doctor (Decadron, Kytril and Ativan, half an hour before taking the drug) works.
On the last cycle I discovered the perfect snack: shrimp balls and squid balls. I buy them frozen in Asian supermarkets and boil them and eat them with soy sauce. It was more practical than the expensive sea-urchin sushi that I craved on the previous cycle. On another chemo, all I wanted to eat was anchovies...
Oh no, I am telling you to eat anchovies when I hate anchovies! What I am trying to say is that foods with a strong flavor work better for me, because at least I can have a taste sensation when everything else tastes bland.
Rajiv, Good Luck with the trial and keep in touch.

My Dad has a new Blog

2010-01-04T19:09:00.003-05:00

Dear everybody, It is Maya reporting to you that my dad has a new blog!!!!!!!!!!!!!!! It is called:
The Intentional Sketcher. Enjoy it!

2010-01-04T12:15:00.008-05:00

Adios Lhasa.

When my lifetime had just ended
And my death had just begun
I told you I’d never leave you
But I knew this day would come

-I'm going in, Lhasa

2009-12-23T08:41:00.002-05:00

DESEJOS

Desejo a vocês...
Fruto do mato
Cheiro de jardim
Namoro no portão
Domingo sem chuva
Segunda sem mau humor
Sábado com seu amor
Filme do Carlitos
Chope com amigos
Crônica de Rubem Braga
Viver sem inimigos
Filme antigo na TV
Ter uma pessoa especial
E que ela goste de você
Música de Tom com letra de Chico
Frango caipira em pensão do interior
Ouvir uma palavra amável
Ter uma surpresa agradável
Ver a Banda passar
Noite de lua cheia
Rever uma velha amizade
Ter fé em Deus
Não ter que ouvir a palavra não
Nem nunca, nem jamais e adeus.
Rir como criança
Ouvir canto de passarinho.
Sarar de resfriado
Escrever um poema de Amor
Que nunca será rasgado
Formar um par ideal
Tomar banho de cachoeira
Pegar um bronzeado legal
Aprender um nova canção
Esperar alguém na estação
Queijo com goiabada
Pôr-do-Sol na roça
Uma festa
Um violão
Uma seresta
Recordar um amor antigo
Ter um ombro sempre amigo
Bater palmas de alegria
Uma tarde amena
Calçar um velho chinelo
Sentar numa velha poltrona
Tocar violão para alguém
Ouvir a chuva no telhado
Vinho branco
Bolero de Ravel
E muito carinho meu.

Carlos Drummond de Andrade

Good News

2009-12-18T22:41:00.004-05:00

Hi everyone, it is Maya wrting to you because Elsa just came back from NYC and is very tired.
Elsa has good news for us! She says she was not kicked out of the trial! The CAT scan showed that some of the tumors GREW a little and some SHRUNK and there are NO NEW ONES in her belly!
Bye Bye for now MAYA!

Card carrying Radioactive Suspect

2009-12-18T12:22:00.003-05:00

Status: Radioactive

Ms. Elsa Dias had a procedure in Nuclear Medicine at Memorial Sloan-Kettering Cancer Center. Measurable levels of radioactivity may be detectable until: 12/20/2009.

In preparation for the Guantanamo trials in New York, NYPD is checking radioactive levels throughout the city, so I was given a card after my PET scan this morning, warning them that I may not be a terrorist. At least not a radioactive one.

NYC is Under Pressure

2009-12-17T18:15:00.002-05:00

Music- Under Pressure by Queen and David Bowie

Hello! This is Filipa! Elsa asked me to post a video I made here on her blog since she's going to NYC today to do a CT Scan and a PET scan tomorrow. Good luck mamã!! I love you! :) I hope you like it. I have some other videos on my blog if you'd like to see them :)

2009-12-17T08:56:00.000-05:00

43-hour operation

2009-12-15T11:24:00.006-05:00

Mr. Collison, a wry, gray-haired man who has his own business selling metal-cutting tools, had a liposarcoma, an uncommon type of tumor that arises from fat cells. He had no symptoms until October 2008, when he began to itch all over and became jaundiced. A CT scan found a tumor the size of a softball pressing on his liver and blocking his bile duct. (Click on text to read the NYT article)

Photo: Alex di Suvero for The New York Times

Winter Magic

2009-12-06T09:18:00.009-05:00

Maya went to our neighbor's house yesterday and made this beautiful "gingerbread" house. I needed a background to shoot the house, so Keri ordered last night's snow.

Back from Outer Space

2009-12-04T08:25:00.019-05:00

Round four (of R7112) ended Tuesday night and I am feeling better. On this last cycle I decided (with permission from Hoffamn-La Roche) to take the drug at night, hopping that I would "sleep-off" the side effects. I am not sure if the change in schedule worked. Maybe. I felt less tired this time and so I was a little bit more active...

What did work was Uni (Japanese word for sea-urchin/ouriço-do-mar) Sushi,

Ginger

and Zé´s infinite patience with me when my appetite is reduced to zero and my taste buds messed up.

Just like Baby

2009-11-30T19:34:00.001-05:00

Zaza, who you may know as Elsa's Jimmy Fund Walk partner, has a dog named Baby. Elsa swears that Baby can tell when she has a tumor. Now, scientists at Queen's University in Belfast decided to spend money to find out what Elsa already knew- that some dogs can tell when you are sick. Baby apparently is a cancer detecting dog, just like these and these.

I guess not!

2009-11-18T07:40:00.001-05:00

Spring?

2009-11-17T18:04:00.004-05:00

stop-motion

2009-11-16T15:56:00.005-05:00

My first attempt. What do you think Francisco?
... I know, the camera moved a few times ;)

Sixteen already?

2009-11-09T18:46:00.012-05:00

Hoje estou um pouco emocionada. A minha Pipinha faz dezaseis anos. Já????? Nao pode ser.

Os bolos da vovó Marlene.

My first-born turned sixteen today. Zé says that now I have to act like an adult ;)
Since I am not very good at baking and decorating cakes, I spent part of the day remembering and scanning photos of Filipa´s past birthdays. My mother is the great artist that made most of these beautiful cakes.

The Medical Tourist

2009-11-07T08:53:00.011-05:00

Another One in 8 Million girl. Click here for the sound and fantastic photographs by Todd Heisler from the NYT.
Mary Elizabeth O'Donnell-Moore is treated at Sloan-Kettering for Ewing's Sarcoma.

The Walker

2009-11-06T23:23:00.009-05:00

Todd Heisler/The New York Times
Click here to hear Maggie Nesciur and see the Todd Heisler's photographs.
from the collection One in 8 Million, stories of New Yorkers in sound and images.

Maggie Nesciur walked miles and miles even during treatment for Rhabdomyosarcoma.

2009-11-05T22:25:00.008-05:00

My body is getting back to normal. Two days without taking the drug make a huge difference. I did not forget that I told you (in my last post) that I thought I was depressed... Zé even went to NY with me, to make sure that I would not down play how I was feeling when I saw my doctor ...
But now that I am "washing" the drug out of my system I think I might have confused depression with fatigue...

What is important is that I am feeling good and happy to have 16 drug free days to enjoy. :)

Day 8

2009-11-01T21:04:00.004-05:00

two days to go

I confess this drug is not an easy one to take. I still call it study drug, targeted drug, clinical trial... but I really should refer to it as what it really is: CHEMOTHERAPY

And since I have this blog to complain about my treatments... this week I have to add depression to the list of side effects I am experiencing from the drug. When I crawl out of the hole I am in, I´ll tell you more.

I hope it will happen soon, i don´t like being here away from everyone.

Dr. M.E.

2009-10-26T08:32:00.003-04:00

YEAH!!!!!!!!!!!

2009-10-23T15:42:00.002-04:00

Had not been to NY since September. Today I came with Elsa because she had a CT-Scan and PET Scan and came to find out if she could go on with the study drug.

Yes, SHE CAN.

The tumors were stable, even after interrupting the study for a month due to her infection at the port site. Her doctor was very happy and so were we. I am usually very cool in these situations as I am always prepared for whatever news. My thought is always that as long as we can go on trying something else, it's good if something works, but if it does not, then the fight goes on. But this time, since it worked last cycle, I was hoping it would work this cycle too. So I was a bit nervous and hoping for good news, so it was a relief to hear that the drug is working and that it has stabilized her tumors.

Elsa deserves this, so I am really quite happy. I do not even mind that we have to thread through Connecticut traffic now.

Like Maya says: Yayey!

Scissor Happy

2009-10-19T18:03:00.006-04:00

I had forgotten how good my garden makes me feel.

After the storm

2009-10-19T09:53:00.026-04:00

Here are some photos of my garden this morning. Somehow it survived yesterday's snow storm. Can you believe that it snowed? Snow when I still have my October Garden Chores to do!
This week, before starting cycle 3 of R7112, I have to:
Prune rosebushes
Bring dahlia bulbs in (shout it you want some)
Plant Spring bulbs
Pull vegetable plants and annual flowers
Divide Irises

I know you worry when I don't post for several days but take it as good sign. All it means is that I am feeling good. Actually, I have been away from the blog for a good cause: housework. The thankless task has kept me away ;) .... At least Maya is happy. I have ironed all her clothes, sharpened all her pencils, cleaned her room..

On Friday I am going to NYC for a PET scan, CAT scan and LC scan.
I want to know who can guess what a LC scan is. ;)

It is sunny outside so I am going to prune the rosebushes now.

Aquele Abraço,

Elsa