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

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

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

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 :)

43-hour operation

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

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

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

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!

Spring?

stop-motion

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

Sixteen already?

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

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

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.

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

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.

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

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

I had forgotten how good my garden makes me feel.

After the storm

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

Only one more day

at least it is possible to count down. Nine days gone. One left to go... and then 18 days to rest.
I am not going to have a fun day in Manhattan tomorrow. This trial has another (why so many?) 12 hour-study day... This means that I have to get many blood draws throughout the day. Since my train only arrives at Penn Station at 10h20 am I am starting the day late. Most likely I'll be at the Urgent Care of the main MSKCC building at midnight for the last blood draw...

yeah...I am also on the 9th day of the steroids and anti-nausea pills, my mood has not improved. Here at home everyone knows how it is so they just leave me alone with my spider solitaire.

In any case, this cycle went ok. I manged to take morning walks with my neighbor and I was awake for most of Maya's birthday.

Blame it on Decadron

Now, I am more awake than it is desirable. My eyes are wide open and I have difficulty closing them at night. Decadron, is the culprit. I am taking it in combination with Lorazepan and Kytril to fight the nausea and vomiting caused by the trial drug.

Decadron (Dexamethasone), a corticosteroid drug, is also responsible for my mood swings. I have noticed that when I am on these pills I am easily irritable. I snap (I SCREAM) for no reason (it happened this morning with Maya, sorry baby!) and I have no patience for anything.

In any case, I am taking a low dose of Decadron. We should survive... but I am warning you ;)

I am on day five of cycle two of R7112 and I must say that this cycle is going a thousand times better than cycle one. Well... it had a great start.

My friend Rui flew from Canada to NYC, just to take me to my visits at Sloan-Kettering and see how well I behave during the blood draws!
Sometimes all we need is someone who reminds us of who we were a long long time ago. Obrigada Rui!

I think I'm waking up now ;)

article on the Boston Globe: Jimmy Fund Walkers Outpace Recession

Psssssst!

Don't read too loud! Elsa's sleeeeping. I think it's till tomorrow.

Thanks!

We did it! We walked 13.1 miles (21 km). I am not sure but I think we did it in a little over four hours. I can't move right now but I wanted to thank everyone who sponsored me. You were fantastic. I have never raised money (or walked 13.1 miles without resting) and you made it possible for me to raise 1.520 dollars! My team raised over two thousand dollars. The fundraising will go on for another month so I think we will reach our team goal.
Again, a million thanks!

Walk report

Elsa called a little while ago. She was pretty excited. There was only five miles left to the Walk and she was feeling great.

Jimmy Fund Walk

The sun had barely risen and Elsa was already geared up and ready for the Jimmy Fund Walk, which is taking place today.

Zaza came to pick her up and they both drove to Newton to start the walk.

Me on the other side

It's not that I was happier, more loved, or a better person before. Quite the contrary. But sometimes I miss my old self. The me that stayed on the other side. I often find myself wanting to rewind the tape and stop it on the morning of the 27th of April, 2000.

This intense desire to rewind the tape just happened. I was getting out of the shower and I got a glimpse of the other half of me, the one that existed before sarcoma. Could my other half be coming back?

Maybe it's just my imagination: because my port was taken out; I got two units of blood, and I gained some weight during my stay at the Manhattan hotel ;)- I mean at Memorial Sloan-Kettering.

... or maybe I am just getting another overdose of Murakami ;).

When I went to New York last Friday, I was planning to come back on the same day. However, since the train ride from Providence to Penn Station is long, over three and a half hours each way, I grabbed two books before I left the house - Sputnik Sweetheart by Haruki Murakami and Viruses, Plagues & History by Michael Oldstone. I am glad I did. Considering the nature of my hospitalization (a sticky bacteria called Enterobacter Cloace), you might guess why one of the books was not touched.

Here are some photos of my famous blue robe and my Michelle.

We could not stop smiling. Yes, I was hospitalized but we both got Fantastic news from the scans we did on Friday. Michelle had two surgeries this summer and now has NO signs of her spindle cell sarcoma and my liposarcomas are shrinking.

On the 15th floor of MSKCC there is wonderful terrace (any terrace inside a hospital is a wonderful thing). We got some sun before going to the Recreation room to make some dreamcatchers.

Michelle send me a photo of your dreamcatcher! I still have to finish mine!

Hugs to everyone from

Me on this side

ELSA!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

ELSA CAME HOME YESTURDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!
WELCOME HOME

The port is gone

Elsa's port, fully accessed.

Elsa during the operation. Yeah, she's under there somewhere.

After the port comes out, the doctor readies it for a proper picture, at Elsa's request.

Here it is after five years serving Elsa.

Hey! Where is it? It's gone.

Assisting Elsa's Surgery

The port is out. Pretty amazing to watch. The surgeon, Dr. Winter, asked me if I wanted to watch and I, of course, could not pass up the opportunity.

It took about 30 minutes for him to coax the port out of her. He began by giving her some numbing medication, which is pretty gruesome to watch as there is no ceremony in the way he sticks the needle with the Lidocaine. Then he covered up the area to isolate it and prevent infection. Elsa was under a sheet, most of her all covered up with just the area where the doctor was going to make the incision showing. Then the doctor took an X-acto knife, or at least one that looked like an X-acto knife and started cutting the skin. Once he had a big enough opening, he stuck a scissor inside and started to pull the skin aside, getting deeper and deeper into Elsa's body. Periodically, he used the knife to cut away scar tissue, until he could stick his finger inside. Then, he started to wiggle his finger inside the hole he opened up, trying to separate the scar tissue from the port. This took the longest time out of the entire operation. Every now and then he would ask for gauze or something like that, which I believe now allows me to say that I assisted in a surgery at MSKCC. Not many people have done that.

Eventually, after some more massaging and cutting, he was able to remove the port. There was quite a bit of scar tissue around the port, so he had to cut it off in order to be able to remove the port. I took a picture, which Elsa will post later. I am now an assistant surgeon, so I cannot be bothered to do things like that.

After the port came out, he sowed up the wound and that was it.

Elsa was, according to him phenomenal. I believe him. She was under the cover, not uttering a sound, although I know she must have been feeling uncomfortable.

As for me, I handled it well, although half way through the doctor's wiggling operation, trying to separate the scar tissue from the port, I became drenched in sweat.

I'm really at awe at what Elsa puts up with to fight this cancer. I really think liposarcoma does not know who it's messing with. There is no hope for it- Elsa will beat it.

I must say, it was also pretty amazing what the surgeon was able to do with what amounted to run of the mill kitchen utensils, properly disinfected- of course. Not that I'm suggesting anyone try a similar maneuver a home, mind you.

Cheers all!

The port will go

It's Monday afternoon, Labor Day. After three days in hospital, the doctors decided that it was time Elsa's port (catéter) was removed. It was in for five years, which by all accounts is a very long time for a port to be in without any issues. So it is not surprising that the port is coming out. Dr. D'Amato tried to obliterate the offending bacteria with anti-biotics, but blood cultures were still coming out positive so now it's coming out and hopefully Elsa will go home soon.

Elsa requested that I take pictures of her port, so she will post them later, perhaps with before and after pictures. Maya will be happy, since she hated the port.

Now that there is an end in sight to Elsa's stay at MSKCC, we are both more relaxed. It was a bad time for this thing to happen, Labor Day weekend, having to be away from Filipa and Maya, but Michelle came by yesterday and that got Elsa's spirits up, not to mention the many compliments she received due to the blue robe Michelle got for her. Elsa was also very excited to learn that there is no sign of sarcoma in Michelle, which made her very happy.

So now we are waiting for the surgeon to remove the infected port. I think though, she is feeling some separation anxiety so I'm going to comfort her.

a light at the end of the tunnel (for liposarcomas)

after just one cycle, the tumors SHRANK!
Yes it is true! Yesterday's CT scan showed that they
Shrank!

oh I am hospitalized in NYC, at MSKCC, because of an opportunistic bacteria, I had to be rushed to the Urgent Care... but that's just a bump on the road.

What is important is that R7112 is working!!!!!!!!!!!!!!!!!

Many hugs to all of you :)

and to those of you with liposarcomas I leave here hugs full of hope. It looks like, finnally, there is a light (drug) at the end of the tunnel.

sailing against the wind

Not long ago, I wrote an email to Edward Kennedy. I was asking him not to forget "rare diseases" (in another word: sarcomas) in the language of the health care reform bill he introduced in Congress. I received an answer on August 17, on a day I could hardly lift my head due to nausea. In the email he explained to me that the details of the legislation have not been determined, however they were making progress and he was looking forward to working on the legislation with the new Congress. Since I was feeling so weak and sick my immediate thought was to wonder where did Ted Kennedy find the energy to continue fighting for his health care reform, which he called "the cause of my life", while fighting brain cancer. And now the lion of the senate is gone. His skills on negotiating and getting a bill through will be missed when Congress resumes after Labor Day. For us, in Massachusetts, after having him as our senator for forty seven years, it will feel strange .

On August 25th, cancer also claimed the life a friend of mine. Filipa lived less years than those that Kennedy was on the Senate. Like him she spent the last year sailing against the wind. When I am ready I want to write about the incredible 20 months she lived with lung cancer, how brave she was and how she chose where to die. But I am still in that phase when I just have a knot on my throat and no words are appropriate.

R7112 and Alencar

R7112, the trial I am on, did not work on Jose Alencar, the vice-president of Brazil. I am watching the news on the Brazilian channel, TV Globo, and they just announced that the experimental treatment Jose Alencar was on, at MD Anderson in Texas, did not work. The number of sarcoma tumors in his abdomen increased. But as always, 77 years old Alencar is not giving up. Click here for link to news in Portuguese.
I was hoping that this trial would work on Jose Alencar. His story is so similar to mine (except to the vice-presidency part ;)). He has been through numerous surgeries (two of them with my NY surgeon, Murray Brennan). Just as it happened with me, ET 743 (yondelis) did not work with him.
According to the news report, the next step for him will be conventional chemotherapy. Surgery is out of the question for now.

Eu fico a torcer para que tudo dê certo.

sniffing health problems

dear Gabby, don't miss this video on the National Geographic site.
It shows how some dogs are being trained to warn their owners of a hypoglycemic attack. It also shows another dog sniffing bladder cancer. What I have been saying about Baby is true ;)

Surgiu mais uma estrela no céu. Chama-se Filipa Delgado.

Filipa Delgado is the name of the new star on the celestial sphere.

hospital bed

When you live in the Kingdom of the Sick you learn not to make too many plans.... but after spending a week in NYC because of daily blood draws and EKG's, I was planning. All I wanted was a full week away from hospitals.... I was thinking of spending the last days of August near a Rhode Island beach..

but

here I am in a room at Sturdy, my local hospital. It is nothing serious. Yesterday, I developed a fever. It was just 101ºF but enough to make me run to the closest emergency room. That's how it is in our Kingdom, an insignificant fever is never insignificant. I was hospitalized yesterday and will only be released when the fever disappears. I better pretend that this hospital bed is a beach bed.

R7112

Dear friends,

As Maya has told you, I am feeling better. The nausea is gone and I am smiling again. Thanks for cheering me up (and for all the anti-nausea tips).
This time I will not pretend, the first days on the study were not so easy. It was hard to control the nausea, I did not eat, I got dehydrated, felt miserable and my weight dropped to 81 pounds.
The good news is that I take the drug for ten days and then I rest for seventeen days. Unaware of this "minor" detail, I was suffering just from thinking that I would have to take the five pills (250mg each) everyday for months. So imagine how I felt when I realized that I was starting a break on Wednesday.
Now, that I entered the resting period of the study, I have to recuperate the weight I lost. Today we had Dim Sum (Yam Cha) in Chinatown with Paula, a friend from my childhood in Macau. We had a wonderful time.
Tomorrow, Carlos, my dear high school classmate, will be the one trying to fatten me up.... again in Chinatown, of course.

Someone wrote that this drug has worked on some patients that took 90mg. I am taking one thousand and two hundred and fifty milligrams (1.250mg), while the first patients on this study started with 40mg. My cohort must be one of the last ones on this group since it is already at such a high dose. Knowing that the drug was effective at a lower dose is certainly the best news I have had in months. Thank you for the encouraging information.

F E M

Today Filipa came she has a comment to say:she says did you knowhi maya's a monkey.I say: hello today. Elsa says she is better.

tubes, wires and leads

Yesterday Tara, my mom's nurse , taught me about the tubes for blood, and the leads and the wires for the EKG's. Today she is going to quiz me on them.

Your friend that also writes on her own blog MayaandMeimei
Maya

MSKCC NYC

Today I'm with my mom at MSKCC. We are at the hospital. I will meet her nurses. Right now it is just the 2 of us. We are in New York City with Dadinha and Filipa thogh.

The first week on the Nutlin trial

1.250mg of R7112 have not been easy on my 86 pound body. The nausea turned from mild to severe and I have been in bed since Sunday. The drug was suspended for two days, Thursday and Friday, so I could catch my breath. Still, even without taking the pills for two days, I could still feel the study drug in my system... in any case I resumed my treatment yesterday and I am being as brave as possible. The truth is that I don't want to the Pharmaceutical company to reduce my dose. Tomorrow, I return to NY, and I will know what will the next step be.
I apologize for my disappearance and promise to be back less nauseated.

beijos da enjoadita

Did I say that the nausea was mild?

HUMAN PERFECTION
WHAT COULD GO WRONG?

A retro lipo sarc could ruin it all.

I was walking on 53rd street when I saw this poster. I could not resist photographing and posting it here.

The first day on R7112 went well. The only side effect I felt was some mild nausea. I should add that I also noticed that I walked (20 blocks) at a different pace from everyone else. A lady complained because I was walking so slow... What's the rush?

So, as I told you last week I made it to this restrictive clinical trial. I was on the waiting list for quite sometime but I am glad I am entering it now that the dose is higher.
The drug is oral and I just swallowed five pills. Not too bad since the pills are smaller than most of the oral (study) drugs I have taken.
The doctor told me that this is the best trial to be on if you have a liposarcoma. Let´s hope I am on it for a long long time.

All I need is lots of p53

It is official now. I signed the protocol and I entered the Phase One study for R7112. It was pouring when I left MSKCC and the rain soaked my copy of the protocol... but I can still read what this drug might do:

We are testing the safety of different doses of a new oral medicine called R7112. We want to find out what R7112 does to you and your cancer, good or bad. R7112 blocks a molecule called "MDM2" in tumor cell. This causes the cell to make more of a molecule called "p53". Large amounts of p53 then cause a tumor cell to self-destruct.

I will tell you more details tomorrow. Right now I am going to dream with large amounts of p53

Good night.

NEW YORK once again.

Well, well well. Back to New York and the quirky world of MSKCC.

Elsa arrived from Lisbon last night, and by 4am we were already on the road to NY City for Elsa's new drug trial. After a vacation in Portugal, all that sun and good disposition, she was not ready for the pouring rain. There are T-storms possible for the whole day today, which does not make NYC very appealing.

Well, I'm stopping here because Elsa will not let me publish what I really want to say about MSKCC's screw up of her scheduled PET scan.

So have a nice day!

First we take Lisbon then we take Manhattan

Leonard Cohen is in Lisbon today and I have a ticket to see him!

Yes... I should be jumping with joy... but I also have another ticket in my hand. A return ticket to the USA. The R7112 trial is calling me and forcing me to interrupt my fantastic vacation. I arrive in Boston tonight and tomorrow morning I will drive to New York City for a Pet scan, a CT scan and to sign the new protocol.

I know, I should be jumping and screaming Hooray... but I have been in love with Lisbon since I was 18 and it is always hard to leave.