Sunday, May 31, 2009

Leonard Cohen, Filipa's review

Last night's concert was very good! I really enjoyed it, and there are a lot of his songs that I really like. He was great, his band was great, the theater building was great, the lighting was great, it was all AWESOME! But even though now I know a bit more why people like him so much, I still think his fans are all rather... well, crazy! hehehe, and that includes my mom! :)

We got there about an hour and a half early so that we could "meet other fans"... My mom had posted on the Leonard Cohen Forum that she was coming with me and her sister, and that she would be wearing red shoes but she thought it was just a joke and nearly didn't wear them, but my aunt convinced her to do it, and she did. And sure enough a few minutes after we got there a lady came up to my mom and said "Do you post on the forum? Are you the one who said she was going to wear red shoes?" ~~~~~~ To read more go to my blog ~~~~~~~

An Evening with Leonard Cohen


with my sister Carla

more on the concert and our red shoes tomorrow ;)

Friday, May 29, 2009

How one of the tumors looks like today. I feel like calling the @#$%^&* growing tumor some names.

Maybe I should call it names that will attract more interesting ads. You might have noticed that I "monetized" my blog. I am curious to see how AdSense (Advertisement by Google) works so I created an account yesterday. Maybe I can start saying that I am employed by Google once I start receiving a check at the end of the month... But since I only talk about tumors, sarcoma, cancer, study drugs and other exciting things, the Ads I am getting are not interesting! Sorry about that. Hmmm... unless I start calling my tumors: Lamborghini, iPhone, Porsche, diamond... ;)

Thursday, May 28, 2009

Can you please kill this thing?

I have been "dancing" with tumors long enough to know certain things. This time I don't need a CT scan to know that one of them grew in the past weeks. My little doctor-in-training also knows. Once in a while, Dr. Maya looks at my belly, shakes her head and then mutters something.

Yesterday, she heard me mention that I have an appointment with my surgeon on Wednesday. And here at home we all know, too well, what an appointment with the surgeon means. Since I was tearful and complaining of being tired (tired of pretending that my surgeries are a piece of cake), Maya decided to write a note to Dr. Monica Bertagnolli.

From: Dr. Maya

Can you please kill this thing?
To: Dr. Monica Burtanolie

Wednesday, May 27, 2009

Beautiful Maura de Souza

Maura fought an unclassified sarcoma in the abdomen for 13 months. Through her mother's blog, Maura vs. Toby, I had the privilege of following the brave fight with "Toby, the stupid jerk tumor". But there is nothing fair about sarcomas.

I am posting the video of Maura's graduation. She received her Bachelor in Music just a few days before passing away.

Erin, thank you for the words of encouragement you continue to write to me, even while you are feeling the pain of grieving. Um abraço forte for all your family.

Tuesday, May 26, 2009

Trudy (and pi3-kinase) Update

Trudy did not even open her eyes when I approached. I think she has gotten used to all the attention and does not regret her choice. I bet she will be back next year to build another nest, next to the Jimmy Fund Building on Binney St. According to our calculations the eggs will hatch next week. I hope it happens on the 2nd of June when I return to DFCI. I MUST take a photo of Trudy and the poults (yes, that's how you call the young turkeys) leaving.

Next week will also be an important one for me. I will have a CT scan to find out if pi-3 kinase is working. We (Dr. Maya, Dr. Morgan and me) suspect that it is not. All indicates that the tumors have grown quite a bit. Dr. Bertagnolli, my surgeon, will also be looking at the scans... aghhhhhhh

By the way, my lips are back to normal. I skipped a few doses and then resumed taking the GDC-0941 pills. Most likely the drug did not cause the dryness and cuts since it did not happen again.

Thursday, May 21, 2009

My Lips

A close-up of my lips was sent to California today. First, the Californians got a short film of my jumps. Now they get to see my lips. Watch out Angelina Jolie!

I´ll explain. This morning, I woke up with very dry lips. After a while I noticed that I had tiny cuts on them...

Since it has not happened to anyone else on the study I had to drive to Dana-Farber just to show my lips. Amy took photos and sent them to Hollywood, I mean to Genentech, the drug company in California.

Meanwhile tonight´s dose of GDC-0941 was suspended. I hate when this happens. But, hopefully, tomorrow I will wake up without this discomfort and ready to resume the study.

Tuesday, May 19, 2009

still nesting

View to Trudy's nest and Binney St from my chair at the CRC. I took this photo so I am not the other photographer ;-)

Trudy and plate.

Monday, May 18, 2009

pi3-kinase inhibitor

I am on day 21 of my GDC-0941 and I have not said much about the study drug. Take it as a good sign. My hemoglobin is still up. It was 12.3 last Tuesday! I am NOT experiencing any of the usual fatigue and I don't have any "exciting" side effects to report.

I will know on day 36 if the &^%<"#!!^* tumors are shrinking.

Here it is

Old friends together again, after thirteen years, to celebrate Joao's birthday. I am famous for taking photos that one never sees. So I am posting the group photo that we took yesterday, just in case...
(Ja vos mando as outras, estou a ver se encolho as barrigas dos rapazes no photoshop ;-) Beijinhos)

Saturday, May 16, 2009

Where in the world is Elsa?

Once May comes around my mom seems to disappear...
Disappear to where?
Well, to her garden of course!!
The weather is better and it's time to begin gardening so my mom escapes to the mini jungle which we have as our backyard. And it becomes vvveeeerrryyy hard to find her. She blends into her garden in such a way that it would be easier to play a find Waldo game than a find Elsa game...

Don't believe me? Have a look yourself!!

Tuesday, May 12, 2009

Two Thousand Words Post

One picture is worth a thousand words.
Two pictures are worth two thousand words.

Maura, David, Suzanne and me at the CRC.

from Binney St - part 2

Today is one of those looooooooooong days. Twelve hours at the Clinical Research Center to do several blood draws and electrocardiograms. Most of the patients have left and I think I am getting bored.

By the way, the trial is going well. The only side effect I am noticing is lack of appetite.

from Binney St

Turkey Update

Trudy is now sitting atop eight (maybe nine?) eggs.
Can you see her? According to my sources she started incubating yesterday and the incubation period lasts 28 days.
Now we need name suggestions for the forthcoming new Bostonians.

Sunday, May 10, 2009

Wisteria Sinensis (Glicínia-da-China)

(Sim, estou um pouco "wistérica";-))

"Quem espera sempre alcança," this is a popular Portuguese proverb, corresponds to the English proverb, "Good things happen to those who wait." And I have waited, spring after spring for my wisteria sinensis to bloom. I had a surprise this morning. Today, it flowered for the first time. A sweet coincidence since it was a Mother´s Day gift, three years ago, from my girls.
For now I only have a few blooms. But one day it will look like this. I just have to wait.

Happy Mother's Day.

Saturday, May 9, 2009

Friday, May 8, 2009

The Record

The rumor at the CRC (Clinical Research Center) is that I have the "Record". No, not the 100 Meters Record, not that one. It seems that my record is for the cancer patient (at Dana Farber) that has participated in more Phase One studies. I am now on my 11th clinical trial. Nine of them Phase One studies.

I know, it is not a record to be proud of. All it means that I have an advanced cancer for which standard therapy does not exist.

But I have been thinking that it means a lot more:

It means that I am as stubborn as my tumors.

It means that I believe in Science (so please stop sending me the absurd emails with titles such as "Beat cancer without Chemo").

It means that my heart, lungs and other organs are still strong since I am still being accepted to the studies.

It means that I did not lose my optimism.

It means that even if I have not yet benefited, Science has.

...It means that I can be proud of my eleven clinical trials and the many more still to come.

Wednesday, May 6, 2009

My mother´s day gift was just delivered. I think Zé wishes I was still asking him to buy me shoes ;)

Tuesday, May 5, 2009

wildlife report

I have not seen Trudy, the wild turkey. But I check on her nest every time I go to the CRC at Dana-Farber. There were six eggs this morning. But I can't put the photo here since I took it with my phone camera and I don't have a clue on how to transfer it... so, to compensate, I went to my neighbors yard and took these two photos. The Canadian geese couple became very protective of their 5 little goslings when I approached with my camera.

By the way, I love this trial. I continue to have NO side effects! Like Maya says: YAY!!!!!!!!!

Sunday, May 3, 2009

cute minor pests

The chipmunks, Tico, Teco, Chippy and family are not back from hibernation! I complain that they eat the strawberries, cherries and sun flower sprouts but now that I don't see them I am getting worried.
Does anybody know why they disappeared? I swear that I didn't poison them. I even planted some strawberries near the stone wall where they lived.

Saturday, May 2, 2009

Friday, May 1, 2009

cozy Dana-Farber

Today I went to the CRC for a blood draw and Christine asked me if had seen Trudy.

Who's Trudy?
Well, Trudy is the wild turkey that decided that the bush in front of the CRC (Jimmy Fund Building) is the perfect place to lay her eggs.

See! I am not the only one that thinks that Dana-Farber is a special place.

(Tarsha and Sarah)