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
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
Bolero de Ravel
E muito carinho meu.
Wednesday, December 23, 2009
Friday, December 18, 2009
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!
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.
Thursday, December 17, 2009
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 :)
Tuesday, December 15, 2009
Photo: Alex di Suvero for The New York Times
Sunday, December 6, 2009
Friday, December 4, 2009
What did work was Uni (Japanese word for sea-urchin/ouriço-do-mar) Sushi,
and Zé´s infinite patience with me when my appetite is reduced to zero and my taste buds messed up.
Monday, November 30, 2009
Monday, November 16, 2009
Monday, November 9, 2009
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.
Saturday, November 7, 2009
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.
Friday, November 6, 2009
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.
Thursday, November 5, 2009
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. :)
Sunday, November 1, 2009
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.
Friday, October 23, 2009
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!
Monday, October 19, 2009
This week, before starting cycle 3 of R7112, I have to:
Bring dahlia bulbs in (shout it you want some)
Plant Spring bulbs
Pull vegetable plants and annual flowers
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.
Monday, October 5, 2009
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.
Thursday, October 1, 2009
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!
Monday, September 14, 2009
Sunday, September 13, 2009
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!
Friday, September 11, 2009
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.
Tuesday, September 8, 2009
Monday, September 7, 2009
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.
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.
Saturday, September 5, 2009
Yes it is true! Yesterday's CT scan showed that they
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.
Sunday, August 30, 2009
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.
Friday, August 28, 2009
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.
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 ;)
Wednesday, August 26, 2009
Tuesday, August 25, 2009
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.
Thursday, August 20, 2009
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.
Wednesday, August 19, 2009
Tuesday, August 18, 2009
Sunday, August 16, 2009
I apologize for my disappearance and promise to be back less nauseated.
beijos da enjoadita
Friday, August 7, 2009
WHAT COULD GO WRONG?
I was walking on 53rd street when I saw this poster. I could not resist photographing and posting it here.
Thursday, August 6, 2009
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.
Friday, July 31, 2009
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
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!
Thursday, July 30, 2009
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.