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.
Saturday, June 26, 2010
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.
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. ;)
Monday, June 7, 2010
Elsa's new trial.
Elsa asked me to write this post, because she has been feeling miserable and unable to write, even though she misses all of you.
This drug trial she is on is not the worst she has ever tried, but it has made her feel constantly miserable. She has not had energy to garden or write in this blog, and has had constant back pain. Hopefully she will get to feeling better soon and will re-take her normal activities.
Filipa and Maya try to pamper her, but sometimes even that does not work.
I am sure she will back soon, though.
Cheers!
This drug trial she is on is not the worst she has ever tried, but it has made her feel constantly miserable. She has not had energy to garden or write in this blog, and has had constant back pain. Hopefully she will get to feeling better soon and will re-take her normal activities.
Filipa and Maya try to pamper her, but sometimes even that does not work.
I am sure she will back soon, though.
Cheers!
Tuesday, June 1, 2010
One cycle down
Today I start the second cycle of STA-9090.
Cycle one went smoothly: twice a week infusions for three weeks in a roll, followed by a week break. I spoke too early when I said that I did not need any anti-nausea, Maura has to give me Kytril right before I start the treatment. In any case, the toxicity of this drug has been minimal.
The "pain" is that STA-9090 has to be administered intravenously even if you have a port. My double-port was removed last August, but I would have another one placed if the drug company, Syntha, allowed it to be to used for the infusions. My veins "dance away" every time Maura tries to get the line started. After all these years, my veins are still not cooperating!
My appetite has decreased and as a result I look anorexic, weighing 37 kg. The tumors are not popping-out like they do sometimes, I look like I am about to disappear. Ironically, I feel the presence of the tumors like I never did before. They are the cause of my permanent back pain. Until now, I had been among the "lucky" group of cancer patients that could say that cancer did not hurt...I must say that this pain, specially when combined with my chronic gastrointestinal problems, weakens my usual indestructible optimism.
In any case, I will be scanned - on the 21st of June - and we will see if these little monsters are growing. The last two surgeries happened in June... I just hope we can break the yearly cycle.
On a brighter note, I went to the beach this weekend and after several attempts I was able to dive in the beautiful cold cold Atlantic. The freezing water felt really good.
Cycle one went smoothly: twice a week infusions for three weeks in a roll, followed by a week break. I spoke too early when I said that I did not need any anti-nausea, Maura has to give me Kytril right before I start the treatment. In any case, the toxicity of this drug has been minimal.
The "pain" is that STA-9090 has to be administered intravenously even if you have a port. My double-port was removed last August, but I would have another one placed if the drug company, Syntha, allowed it to be to used for the infusions. My veins "dance away" every time Maura tries to get the line started. After all these years, my veins are still not cooperating!
My appetite has decreased and as a result I look anorexic, weighing 37 kg. The tumors are not popping-out like they do sometimes, I look like I am about to disappear. Ironically, I feel the presence of the tumors like I never did before. They are the cause of my permanent back pain. Until now, I had been among the "lucky" group of cancer patients that could say that cancer did not hurt...I must say that this pain, specially when combined with my chronic gastrointestinal problems, weakens my usual indestructible optimism.
In any case, I will be scanned - on the 21st of June - and we will see if these little monsters are growing. The last two surgeries happened in June... I just hope we can break the yearly cycle.
On a brighter note, I went to the beach this weekend and after several attempts I was able to dive in the beautiful cold cold Atlantic. The freezing water felt really good.
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