Thursday, July 22, 2010

BWH July 22, 2010

Elsa and I arrived at around 11:30am at Brigham and Women's Hospital. She cried when they poked her for a blood draw. She misses her port.

After being admitted, we waited in the waiting area, and then went to the lower floor of the hospital for Elsa to be prepped for surgery.I took the pictures below while she waited.




Here she is beginning to play hide and seek.




After talking to a team of nurses, who put on an IV line and asked her a bunch of questions and gave her a pillow, and warm blankets, and pampered her, she spoke to the anaesthesiologist. No dilaudid, it was agreed. Last time they gave her dilaudid after surgery, to take care of her pain, but it made her feel miserable, so this time it was agreed that dilaudid is out of the question.

I left after a while when the anaesthesiologist came to start preparing Elsa to enter the operating room.

It's now 2:19 pm, so I am going to go to the waiting room.
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Wednesday, July 21, 2010

Pre-op

Once again I am being recruited to be your intrepid (albeit ephemeral) reporter.
The ever smiling Elsa is going for her 10th surgery, after a couple of months of constant pain from a few unwelcomed invadors.

This past Monday we went to pre-op, where I took these pictures. Tomorrow is surgery day, so she is now drinking those awful concoctions to prepare her bowels for surgery. Calm, as always, she is resigned to the fact that she will miss a few episodes of tititi, but there will be plenty of time to catch up once she is home.

Filipa is in Cabo Verde, so Maya will be staying with Gabi at Zaza's, making things easy while I keep Elsa company at the hospital for the next few days.

Cheers all! Updates coming soon.

Z


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Para a Mama! (For mom)

From: Santa Maria, Sal, Cabo Verde

Ola Elsa!
 I miss you!!
 I went to the beach today, and could only think of you.  ^^
I wish you were here with me!
 I looooove you!!!!!!!!!
I hope everything goes well tomorrow, I will be thinking of you with all my heart!
MUITOS BEIJOS!

Love,
Filipa <3


Tuesday, July 20, 2010

Chega!

I found the perfect song to dedicate to my tumors. Chega! Chega, the title of this song means enough. Enough! Não, não te quero mais! I don't want you anymore...
vai sair da minha vida, voce vai ter que mudar...
p'ra me livrar de voce,
to get rid of you, I have a date with Dr. Monica Bertagnolli on the 22nd, Thursday at 1h30.


Ze has promised to post as soon as I am out of the Operating Room.
Enjoy Marti'nália while I enjoy my chicken broth... Yes, the torture has started, I am on a clear liquid diet.

Saturday, June 26, 2010

Surgery #10

I love my surgeon. I really love her but I wish we could meet every other year instead of every year! Yeap. Surgery #10 is comming (to a theatre near you). There is no rush, so the annual debulking will be at the end of July or beginning of August.

I am calm. I can't allow my mind to think otherwise. As usual, it will be a major surgery, but in the past I have tolerate them well...

... so, don't worry about a thing.

Monday, June 21, 2010

Good Luck Tuomas

I will be thinking of you tomorrow. Have a good surgery and recover fast. Yes, recover fast so you can watch the game Portugal-Brasil on the 25th.

Saturday, June 19, 2010

Waiting Room - Dana 1

Yesterday
It is 7 am and I am at the Radiology department. I have two choices: apple or berry. Better than at Sloan where the choices are banana or banana. I have an hour to slowly drink two bottles of my berry wonderful contrast drink. I warned the nurse that I am not going to drink the second bottle and that I don't even know if I'll be able to finish the first. "Try your best." that's what they always tell me. I try. I know I have to try, since I don't get the IV contrast -I am allergic to it, even when pre-medicated. Without the injection of the contrast dye, my scans are very quick. The radiologists and doctors take more time to read them but I am out of the machine in no time.

At 8h20, I am in the Waiting Area of Dana 1, it was already full. Too many of us here, we could all be doing some thing else, this is the first thought that always crosses my mind. Then I think, at least we all found our way to Dana-Farber, we could not be in a better place. Without my morning coffee and with a belly full of barium, I don't look too happy. As soon as we sit, I hide my face in Ze's shoulder and go into a crouch. "I know how you feel," the man in front of me said. This is the non-verbal message that is exchanged in the waiting area, but usually not spoken out loud. He did indeed. It turns out that he has been living in this cancer planet for 17 years. A good mood is contagious. When he was leaving, I thanked him for making me feel better. You will never guess, what he did after. He sang for me. When he left, I was not the only one smiling in the Waiting Room.

Shortly after 9 am, Dr Shapiro has already seen the scan and has the results. As I suspected the tumors grew. So, I am off the STA-9090 trial. This time my doctor did not have to look for tissues to dry my tears. Since I was not expecting good news, I was ready for what he had to say. The next step is to see my surgeon on Wednesday. We want to hear what Dr. Bertagnolli thinks. The question is: should I have an operation now or can I wait.

I have a lot of pain because the masses are compressing my organs. It is my fault that the pain has not been controlled, I have not been taking any pain medication. Ironically, I am willing to test all these experimental drugs but I hate and avoid safe, FDA approved, common medications.Call me crazy, but it is true. Andrew, my nurse practioner, has tried everything. Patiently, he writes prescriptions that he knows I am not going to fill...

Ah but today I feel better!
Andrew: I am taking an over the counter pain killer every six hours and I filled the prescription for the narcotic pain killer... at least I filled it! ;)
Maura: You don't have to stick me now, hopefully the next trial will be an oral one and I'll have a new port.
Kerry and Diane: I loved seen in you at Dana 1, thanks for the hugs.
Zaza: When I call you crying and complaining about my ^%#@ *&) tumors, you change the conversation and start talking about other things. It must be a technique you use with your students! Well, it works! Thank you, you are my secret weapon when I feel that I am losing my mind.

Friday, June 11, 2010

UBUNTU!

Meaning of Ubuntu explained by Nelson Mandela:http://www.youtube.com/watch?v=RGFdkBI0TcI
and in the film Country of My Skull: http://www.youtube.com/watch?v=7tTmvBsNyXY
Ubuntu para todos nós. Reportagem da Globo: http://www.youtube.com/watch?v=GLk5FNr8ymo
Dear friends, Ubuntu to all of us, as the World Cup is about to start. I am a lot better with a little help from two volunteer blood donors. Yesterday I received 2 units and today I am ready for the games. Now, if I disappear it will be due to World Cup. ;)