Tuesday, November 2, 2010
Elsa is being treated with Doxil, to see if her tumors stop growing. The current situation is not easy, but from the beginning we decided to fight until it was not possible to fight anymore, and that is what is going on now. Another fight, this time against tumors and constant pain.
Monday, November 1, 2010
Friday, September 3, 2010
Thursday, August 26, 2010
The emergency room was quite a happening place last night. There was a woman who was in bad shape, but had a great attitude. She adopted a dog from Puerto Rico. There was a man (see my drawing) whose ear was bitten by his dog. He had the piece that was bitten off on ice for the doctors to sew it back on. The dog is supposedely the most wonderful pet (according to him), which leaves me wondering what he did to make the dog bite him.
Meanwhile, I just spoke to Filipa. She was at the top of Fogo's Volcano.
Monday, August 2, 2010
I miss you so much!
I'm glad you're going home today, I wish I was there with you.
I saw the pictures of u and Maya, I'm jealous!
Yesterday I went fishing with Vovo Celso and his friend Ze Carlos.
I caught the biggest fish out of the three of us!
It's for you!!! (Vovo Celso said it's called a Bica)
My stay at Brigham and Women's Spa, I mean, Hospital, has been longer than usual because I was (am?) undernourished and weighing 34 kilos (77 pounds)...
But something is telling me that I am leaving today!
Sunday, August 1, 2010
Today, we came to see Elsa. I took this picture of her and Maya.
Thursday, July 29, 2010
As Bob Marley would sing.
Get up, stand up, refuse the hepburn shot.
Get up, stand up, don't accept the insulin.
Get up, stand up, say no to the hospital.
Get up, stand up, patient want no more pain.
She has been walking and drinking broth and liquids. Her surgeon said she could start solid foods tomorrow if she wants. She wants.
Wednesday, July 28, 2010
She sends her love to all.
Sunday, July 25, 2010
Saturday, July 24, 2010
She was watching Sinha Moça on You Tube.
After a while, we went for a walk. She took a trip around the nurse's station and down one of the hallways. This is very good progress. She still has difficulty talking because of the GI tube on her nose, but otherwise, she is making very good progress.
Friday, July 23, 2010
There is still some pain and nausea, but she continues to get better. Even just one day makes a big difference.
Elsa is mostly still sleeping, which is good. She needs the rest. I gave her a foot massage to relax her and she fell asleep. She alwyas wants to go home as soon as possible, but this time the doctor said that she needs to take it easy. She needs to be able to eat without complications before she goes home. She came in with the weight that she usually goes home with after not eating for a week, so she cannot afford to lose any.
Thursday, July 22, 2010
Good night. I'm tired and ready for some rest.
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.
Wednesday, July 21, 2010
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.
Tuesday, July 20, 2010
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
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
Saturday, June 19, 2010
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
Meaning of Ubuntu explained by Nelson Mandela:http://www.youtube.com/watch?v
and in the film Country of My Skull: http://www.youtube.com/watch?v
Ubuntu para todos nós. Reportagem da Globo: http://www.youtube.com/watch?v
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
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.
Tuesday, June 1, 2010
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.
Wednesday, May 19, 2010
1 - Friends and family can lift you up and do what no pain killer, anti-nausea or other medications can do during treatments. Many patients choose to keep their illness a secret. I never understood their position, since it is from my family and friends that I draw my strength.
2 - Find doctors that have experience treating your illness and trust them. In the case of rare cancers, such as sarcomas, it is crucial to be seen in a sarcoma center, even if it means major changes in your life. I was living in the Middle East when I realized that I had to live near the place that could save my life, so I moved.
3 - Don't be afraid. As it has been said before, we should only fear fear itself. This point is easier said then done. A cancer diagnosis is a scary thing because it feels like the rug has been pulled from underneath our feet. There was a period during my treatments, around surgery # 4, that I was very scared. It was then that I realized that what I feared was death. I started thinking that it made no sense to fear death since it does not look like the act of dying hurts and once we are dead we no longer exist. If we do not exist, why worry about what we left behind? To stop being afraid of dying, I only had to be reassured by Ze that our daughters would be alright if I died. Believing that he would make sure of that allowed me to stop being afraid of my tumors. No matter what, everything will be alright.
4 - Accept your limitations and adapt to your new life. I learned to say no to many people. I accepted the fact that I could no longer work full time. I learned not to plan more than one thing a day. I learned that I can no longer multitask. I learned to schedule things for the hours I had more energy. I learned to accept that my energy level no longer went hand in hand with my enthusiasm.
5 - Never give up. Believe that a treatment that will work on your cancer is just around the corner. I have been testing drugs, to see if one will retard the growth of my tumors, for the past 6 years. I have participated in 13 clinical trials and so far only a few had a little impact on my stubborn cancer. But I will not give up my search. I'll probably be one of those patients begging from my death bed for another clinical trial.
6 - Find a way to work through your feelings. Cry if you want, talk to others in a situation similar to yours. What works for me is gardening and writing. When I am frustrated, tired of having cancer, I go to my garden (except during the long months of Winter). I spend hours digging, transplanting, sowing, cutting, watering... and I am able to forget everything. Expressing my feelings about my illness in writing helps me sort them out and archive them also.
7 - Connect with other patients with the same illness. Maybe support groups are not your thing - they are not mine either -, but there are other ways. Especially with the internet. I started this blog and with it I became less lonely. Two years ago, I did not know anyone with a liposarcoma. I was feeling alone. Thanks to so many sarcoma patients and caregivers that have written to me and shared their stories, I feel a lot stronger today.
8 - Optimism. I have never seen a study that shows that optimism helps to cure cancer. I am not counting on my optimism to cure me. But the fact that I am optimistic by nature helps me be able to be happy despite the fact that I have an incurable illness. Where others see my oxygen bottle half-empty, I see it half-full.9 - Believe in science and stay away from quack medicine. I believe science holds the best promise to cure cancer. There are a lot of people promoting false hope. I always remember that if something is too good to be true, that is because it is too good to be true.
Monday, May 3, 2010
Tuesday, April 27, 2010
Monday, April 26, 2010
My doctors say that I have been a "good sport". My family and friends say that I have been "brave". Even though their words lift me high, I always feel that I don't deserve so much praise.
Maybe sometimes I am a good sport. Maybe, but it is only because I have no other choice. What can I do instead of accepting, with a smile, more surgeries, more trials, more chemo... I am not brave. I only pretend to be, hoping to fool myself. I really have no other choice.
Optimistic is what I have been in the past ten years. Once, I asked Dr. Morgan if there is a light at the end of the tunnel and he answered yes. That's what I needed to hear. No matter what, I continue to believe in my oncologist's words.
All I have to do is to continue gaining ground. Many of the targeted drugs and cancer vaccines used today to treat several cancers did not exist ten years ago. Today, we are closer to the day scientists find the drug that will cure, or at least delay, the growth of sarcomas like mine.
Coincidentally, I also signed a new protocol today. The next Phase One trial will be STA-9090. This drug will target a protein called HSP90. As it is explained in the consent form I signed today: "HSP90 is a protein that helps some molecules inside your cells to have the right shape (conformation). By stopping it's activity, those molecules never get to have the right structure to be functional, and they are destroyed. We believe that if we stop the activity of HSP90, the rapidly dividing cells that are in your tumor(s), will slow down since their proteins will not be functional without the help of HSP90..."
...and if this drug does not work, there will be more (one that targets CDK4, for example). Gaining ground, step by step, is what I hope to continue to do in the next ten years.
Friday, April 23, 2010
I will tell you more next week, after I do all the preliminary tests at Dana-Farber.
Saturday, April 10, 2010
I have to get you off the trial, the tumors grew ...
The fact that I was experiencing a serious case of jet lag, when my NY oncologist was delivering the bad news, helped. There is a 12 hour difference between Macau and NY, so I was half asleep and all I could say was:
It is OK, we will try another trial.
Next week I am going to see my doctors in Boston, including my surgeon. Meanwhile the New York team will discuss my case on their weekly Wednesday meeting and see if they have any drug for me.
So, that's it for R7112.
Tuesday, March 30, 2010
Saturday, March 13, 2010
It is March 2000. I am running along the Pearl River delta. I run slow and stop frequently. Zé pulls my arm forcing me to keep running. But I can't keep up with his pace. I convince him to keep going. What is happening to me? First my slim waist mysteriously disappears and now I can't run?
The truth is that for the past eight months, I had been fabricating explanations for the fact that I looked four months pregnant.
Initially I blamed it all on the chi pa pau and chi cheong fan (pork rib sandwiches and rice noodles) that came along with my new stress free (boring), sedentary, 9 to 5 government job. I no longer had to run around with a microphone, run back to the newsroom, run to the editing room, run to the studio... Naturally I was now a fat government worker.
Most 3o something women have a "tire" around their waist. Why couldn't I have one too? It was my turn. That´s what I though when people stopped me in the street to ask if I was pregnant. I also started thinking that someone had started a rumor that I was pregnant. Rumors flourished well in the small Portuguese community of Macau.
To get back to my adolescent body I joined Ana's step and aqua aerobics classes. And I came up with a new theory to explain the changes in my body. It was all abdominal muscle and not fat. When I touched my belly it felt hard. So it was not fat, I was sure of that. It almost felt like Ana's muscles. Not bad since my instructor and friend Ana is a triathlon athlete. But all that exercise was not working. My body was simply not responding to any form of exercise. My belly continued to increase. Frustrated I canceled my membership at Hyat's Health Club.
I also had invented an explanation for feeling tired all the time. I was working at the Macau Handover Ceremony Coordination Office and there was a lot to do in the weeks that preceded the transfer of sovereignty of Macau from Portugal to China... and after the handover when the "rules" changed and I had nothing to do at work I interpreted my permanent state of exhaustion as a mild depression...
... my list of explanations for what today seems obviuos went on and on. But I was healthy and luckly everyone in my family had also been always heatlhy. I had no experience with any sort of illness. And I believed that I would remain that way forever. I really had no way of guessing that in a month, in April 2000, a 6 kg (12 pounds) tumor would be discovered in my belly.
Wednesday, March 3, 2010
Every 14 days it feels like Spring to me.
As you might suspect from my long absences from this blog, this trial has a crazy effect on me. For 14 days (10 days on the R7112 pills and 4 to get them out of my system) I feel miserable and exhausted. But then, suddenly it feels like Spring. Rays of happiness and optimism take over me and I feel like whistling and jumping.
Yes, it is snowing right now. But I can't hear the silence of snow. Do you hear me singing with the birds?
This quote of Anne Bradstreet, the first woman to be published in Colonial America, summarizes that I am trying to say: "If we had no winter, the spring would not be so pleasant; if we did not sometimes taste of adversity, prosperity would not be so welcome."
Sunday, February 14, 2010
It's that time of the month- again! I just swallowed 0.25mg of Lorazepam, one tablet of Kytril and 2mg of Decadron (steroids). The Lorazepam is already making me sleepy. Now I am staring at the 1.270mg of R7112 that I have to swallow. I usually swallow all the pills at the same time (one of 250 mg, two of 10mg and two of 500mg). Yes, all of them at once so I don't change my mind.
I am glad that I was allowed to stay on the study. It is still the best drug I can be on. The fact that some tumors shrank is fantastic. I was a bit disappointed with the scan results on Friday because I dared to dream that there would be no growth at all...
Anyway today is an auspicious day to start attacking the monster again. It is the first day of the Year of the Tiger. According to the Chinese it is a sign of bravery.
I wish you all a Happy Lunar Year 恭喜發財 新年快樂 Kung Hei Fat Choi
... and muito Samba and lots of dopamine, norepinephrine and phenylethylamine since it is also Carnaval and Valentine's day.
OK I better stop procrastinating and swallow my chemo pills.
Friday, February 12, 2010
In any case, she is going on with the treatment. She starts the next cycle on Sunday.
OK. She is not upset anymore. She was just mad because I did not give her a hug or say anything. But I'm going to do that now, so I think that will fix things.
Ok. She is smiling again.
It's just frustrating to try so hard and still have so much uncertainty. It's a tough disease, that's for sure.
Now we are waiting for the drugs for the next cycle. We are going to Pret-a-Manger to have a treat before picking up the medication and heading home in that most "wonderful" Connecticut traffic. I can just imagine it.
Oh! But I got the Fast Lane/EZ Pass device now, so we do not have to wait to pay tolls.
A lady, obviously altered by Decadron rails against her child for doing childish things. I know it is the decadron, only too well, for it easly sets off a little monster in me. From normal easy going, I turn into a tight bundle of irritable energy. The lady has not learned to deal with Decadron or perhaps she just doesn't know its effects yet. So the kid now sits sad and morose on the couch. he is just six or seven years old.
Saturday, February 6, 2010
I have been away because Farmville has been taking all of my time. Hopefully I'll be back soon after I cure myself. I have joined FAA (Farmville Addicts Anonymous).
Hello my name is Elsa and I am a Farmvohollic.
Sorry I have to go now, there is a pink calf on top of my dairy barn.
Saturday, January 30, 2010
Over the past few days I have been mourning the loss of my 18 year-old niece, Catarina.
Zé spoke a few words at her funeral and I think they summarize the absolute love I, and everyone who knew her, felt for her.
"Thinking of what to say today
I began to get nervous,
Until I thought how silly that was.
After all Catarina never uttered a word, yet she spoke to all of us.
I ought to be able to manage.
But really, the problem is not what to say but rather
how to condense what Catarina spoke to us
so that I do not keep you here all day.
I remember the first signals Catarina gave us to let us know she was going to be different.
Going home yesterday Elsa recalled the day Joao and Duduca (Dom) came home after hearing from the doctors about the challenges Catarina was going to face in her life.
I think what they did after that brings us here today,
in full agreement that Catarina lived well, despite her challenges,
In great part because Duduca and Joao and Francisco made sure she did,
In great part because Catarina's hold showed Duduca and Joao how to be great parents, and Francisco how to be a great brother.
You all saw the pictures yesterday.
One particular one struck a chord with me.
It was the one of Francisco and Catarina in Chichen Itza.
I often hear parents say how hard it is to travel with kids.
That picture was Catarina's message to all.
Yes, traveling with kids maybe hard.
It may be hard, but not as much as it is worth it.
Catarina never uttered a word,
But she spoke well to all of us.
I remember when Elsa and I moved to Macau.
Filipa was two years old.
Someone gave her a set of dolls.
They were little short dolls,
And she named every one of them.
Uncles, aunts, grandparents and cousins.
There was one with a crib.
She named that one Catarina.
We were far away
As far away as we can get in this earth, really.
But even in the mind of a two year old Filipa
Catarina was present.
And she is present today
As she will always be
in the minds of all of us.
And in the minds of Vovo Chico and Vovo Marlene
who could not be here today,
But who at this very moment have Catarina in their thoughts,
and she is also in Alex's thoughts,
who also could not be here today
But is thinking of Catarina
of that I am sure
She is also in the eyes of her Vovo Helder,
who passed away,
and I am sure will be looking after her,
until we all get to see her again
Catarina never said a word,
But she always spoke to us.
And I think that the most important thing she said to us
is that life is worth appreciating.
The pain we all feel today is her message
her way to let us know that we are alive
That life is here for us to live
So let us not forget that.
Yesterday I was not sure how my daughter Maya would react to seeing her cousin Catarina, that she loved.
At first she was not sure she wanted to go to the funeral home
But when she went and looked at her from afar, she asked to go closer and she cried and she touched Catarina but she was at peace.
When it was time for her to go home, I started taking her towards the exit, but she asked me to take her back to Catarina.
“I want to wave good bye to her one last time, even if she is not seeing me.”
So even though you cannot see us,
Let me say good bye to you Catarina.
Into our lives you came,
and forever shall remain.
Sunday, January 10, 2010
I save everything my girls draw or write. Today we were looking through some of Filipa's drawings and found this one. On the back it reads: "Elsa no hospital - Macau 2000"
Filipa was only six years old and I was doing my first chemo. Hard to believe that almost 10 years have gone by...
Wednesday, January 6, 2010
Gracias Lhasa. More about this great singer-songwriter here.
Monday, January 4, 2010
I don't know anyone else on R7112, so I am glad you found me through my blog. I just completed the fifth cycle. I take a daily dose of 1270mg for 10 days, and then rest for 18. Did you start the trial after me? My first cycle was terrible but the last one did not feel like torture. So the good news is that it eventually gets better.
I have the same side effects you talked about: GI track discomfort, nausea, lack of appetite and taste changes.
My secret weapon to fight nausea and taste changes is ginger (like the ginger slices served with sushi in Japanese restaurants). Got Hope, a friend I made through this blog, gave me this precious advice. I eat it with every meal and also in between meals.
The other trick is to avoid having an empty stomach. When I don't eat or drink not even the anti-nausea prescribed by my doctor (Decadron, Kytril and Ativan, half an hour before taking the drug) works.
On the last cycle I discovered the perfect snack: shrimp balls and squid balls. I buy them frozen in Asian supermarkets and boil them and eat them with soy sauce. It was more practical than the expensive sea-urchin sushi that I craved on the previous cycle. On another chemo, all I wanted to eat was anchovies...
Oh no, I am telling you to eat anchovies when I hate anchovies! What I am trying to say is that foods with a strong flavor work better for me, because at least I can have a taste sensation when everything else tastes bland.
Rajiv, Good Luck with the trial and keep in touch.