Tuesday, November 2, 2010

Sandy at Dana Farber

Elsa was back at Infusion 1 at Dana Farber. It has been seven years, almost to the day, that she first started treatment at Dana Farber. Back in 2003 and throughout 2004, Sandy, a volunteer at DF, kept Elsa's spirits up and today it was no exception. Diane, Elsa's nurse back then, greeted her with a big smile as she alwyas did and Elsa was clearly happy to see her again.

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.

Posted by Picasa

Monday, November 1, 2010

Hi all.

Sorry I have not been around much. Thanks for all the comments, messages and visits. I have been dealing with a lot of pain and have not found a medication that deals with it well. I either am in pain and awake, or else not in pain, but groggy and tired. I am thinking of all of you though. Hopefully, I will soon be able to get back to regular blogging. I am starting a chemo treatment tomorrow to see if it helps reduce the size of the tumor that I have on my back, which is causing me all the pain and discomfort. I will let you all know how it goes. Meanwhile my best to you all, and vote tomorrow.

Friday, September 3, 2010

Back

It Is a Wonderful Life. It really is. And I am not just saying it because I signed the discharge papers five minutes ago. ;) The WBC (White Blood Counts) are back to normal and I have been kicked out of B&W 16A. YAY!!!! Now I am just waiting for Ze to pick me up. This recovery has been long and bumpy but it looks like I am on the right track. At least, after feeling miserable for months, I am feeling like my old self.

Thursday, August 26, 2010

Elsa back in Hospital, Filipa climbs Volcano

Elsa is back at Brigham and Women's. She has been fighting an infection and finally she was told to go to the hospital yesterday, because the infection was not going away. Just a minor set back that will soon be overcome. She had been suffering through pain and fevers, so it is good that she is back where they can take care of her and set her back on track towards recovering.

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.
Her and my sister Kiki left early this morning, 5:30 am their time, to Chã das Cladeiras and climbed the volcano. They are still at the top. The journey up and down takes 4 to 5 hours. I am so very glad she did this, as it will be a memory not to be forgotten.

Monday, August 2, 2010

A Bica for Elsa

Ola mama!
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)

I loooveeee yooooouuuuuu!!!!!!

going home?

This morning I woke up feeling like myself again, so I took these photos.

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!


Posted by Picasa

Sunday, August 1, 2010

Sunday Love

No, there is nothing wrong. It's protection so Elsa could take a shower.


In between movies and meals, a nap or two to replenish energies and enjoy Maya's company.



Posted by Picasa

Feeling better.

I did not come to the hospital yesterday. Picked up Maya at Zaza's and spent the day fixing the house. Maya and I had lunch at Chipotle, in Mansfield, and then after fixing the house we went to dinner at a Japanese restaurant, in Providence (Razan) and had ice cream at Three Sister's. Maya had a scoop of Dirty Garden Mint Chip. It was yummy, according to her. We then took a walk along Blackstone Blvd and then visited Borders books.

Today, we came to see Elsa. I took this picture of her and Maya.


Posted by Picasa

Thursday, July 29, 2010

Patient refuses.

When I came in today, Elsa was in a very good mood. She had discovered "patient refuses," the command word when she does not feel like acccepting what the medical team wants her to have, such the nasty hepburn shots and insulin, just because she was one point over the lower limit.

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

I made a drawing of Elsa's infusion pumps.

july 28 Wednesday

Elsa is doing much better. They have removed the nasty NG tube and put her on TPN (total parenteral nutrition). Basically this means she is being fed by IV. She needs nutrition and is not able to eat, so they are doing this to give her some calories. She also started taking sips to regain use of her GI track.

She sends her love to all.

Sunday, July 25, 2010

Well wish cards.

Maya, Gabby and Zaza made this giant card for Elsa. It's looking good in her room.


Carla sent a card from Syracuse, NY, with a drawing made by Sofia. It's a spwidew.

Posted by Picasa

Sunday 7/25

Came to the hospital with Maya today. Elsa is feeling a little pain and could not sleep much at night so we are letting her rest. Maya is taking care of her today. Hopefully Elsa will get some sleep soon so that she does not look so tired. Maya is laying next to her as I write this post. I know soon they will both be sleeping. Kids have that ability to energize you and to relax you. We spoke to Filipa earlier today and read all the comments that you all have been leaving on the blog.

Cheers!

Saturday, July 24, 2010

Saturday Morning 7/24

Here is a picture of Elsa this morning, saying hello to all of you.

Posted by Picasa

July 24, Elsa sits down.

I came in a little later than usual today. When I got to her room, Elsa was sitting down, all washed and with her hair combed, looking very pretty.

 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

Continuing to make progress.

Her protestations notwistanding, Elsa is making progress. She already sat down and is speaking more, even with the GI tube in her nose.

There is still some pain and nausea, but she continues to get better. Even just one day makes a big difference.

Elsa corrects me.

"Ze, you are not being accurate."

"I'm not feeling good. I can't move, I can't talk. It hurts."

"The Magnesium they are giving me hurts. I feel frustrated because I want to do well right away. These transition days frustrate me."

Morning 7/23

I got in at 7 this morning. Elsa is doing well. She has the usual drainage tubes but is feeling well. She complains of some tingling now and then, but seems to tolerate the lack of narcotics well enough. They are giving her some sort of strong Tylenol instead of narcotics, because narcotics always make her feel miserable. She also has an epidural to help with the pain. The morning nurse came in and asked her some questions about vaccines she has taken and other medications and Elsa answered them correctly and the nurse had to double check her records. Pretty sharp. I do not think I would have remembered if it had been me. Now she is going to bring this up every time we argue about some detail about what happened in the past. I always contend that I am right and she is the one who forgets, but now I am not so sure. The other day we were debating details from when Maya was born and she remembered things in chronological order, better than I did.

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

Finally saw Elsa.

After waiting for a few hours, I finally got to see Elsa, who is doing really well. She is without pain and had already woken up when I saw her. I spent about an hour with her and then they kicked me out so I came home to rest. She was still in the recovery room. I will go back early tomorrow morning.

Good night. I'm tired and ready for some rest.

Elsa is out.

Just spoke to Elsa's surgeon. Everything went well. She was able to remove a lot of tumor. I will not be able to see Elsa until one hour from now. Will update as soon as I have a chance to see her. The doctor said that she could understand why Elsa was feeling uncomfortable. Elsa will take a while to recover. The doctor said that they will want to make sure that Elsa is able to recover fully before she lets her go home, because she was very weak this time, from not eating comfortably for so long. It is obvious that the doctor really cares for Elsa which is why Elsa and I are always so confident going into surgery. I just cannot wait for her to get up and running. The doctor said that Elsa will need a vacation in Cape Verde once she recovers well enough to travel. Funny thing, eh!

Four o'clock update.

Nina, from waiting room reception, just told me that Elsa's procedure did not start until 3 o'clock. This means that it will still be a while before I hear from the doctor. They are running behind schedule. I overheard one of the waiters being told that their patient's procedure did not start until noon, instead of 10 o'clock. So here I sit waiting for news, with Goya by Robert Hughes for company and a little drawing practice for distraction.

Cheers!

Lunch

This was the salad I had for lunch (just in case you were wondering).


Posted by Picasa

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.
Posted by Picasa

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


Posted by Picasa

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. ;)

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!

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.

Wednesday, May 19, 2010

My Commandments

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

First day of STA-9090



So far so good. This is a couple of hours after receiving the infusion of STA-9090, without any anti-nausea medication. The sun is bright. It's a beautiful Boston Spring day. I feel good (well, mostly good).


Posted by Picasa

Tuesday, April 27, 2010

Despite 43 hour surgery, liposarcoma patient dies four months later. NYT news story here.

Monday, April 26, 2010

Gaining Ground

I don't pay too much attention to anniversaries, but I guess I must say something about today's date. It was ten years ago that I took the first step in this looooooooooooong marathon.

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

hsp90 inhibitor

We have a new plan of attack. A Phase One trial by a Massachusetts drug company called Syntha. STA-9090 is an inhibitor of Heat Shock Protein (hsp)90. If you want to learn more about this drug, click here
I will tell you more next week, after I do all the preliminary tests at Dana-Farber.

Saturday, April 10, 2010

jet lag and bad news

I had a wonderful time in Macau. The eleven days I spent there flew but my parents and friends managed to get my batteries completely recharged. A good thing since I needed to be in a good mood to hear the news Dr. Keohan had to give me yesterday:

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

Home


My last cycle of R7112 went so well (apart from feeling dizzy for 3 days) that last Wednesday I got in an airplane and came to the other side of the world. Yes, it is true, I am in Macau, my hometown.

Saturday, March 13, 2010

The betrayal of my body

<< rewind

stop

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

Spring and Winter

I have to admit that this protocol I am on has one great advantage:

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

One more cycle coming up

Elsa is upset about the results today. It seems the tumors are beginning to increase, although it is hard to tell, because they are hard to read. The radiologist read the scan and classified the situation as stable, but there are some readings showing the tumors to be bigger and some where the tumors are smaller. It's a mess.

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.

At the waiting lobby

Stepping out of the elevator means 45 minutes to drink the Barium Smoothie. It does not go smoothly though. It is a 45 minute torture. This time they only have banana flavored smoothie. My least prefered flavor. That adds extra time to the 45 minutes. If Einstein had had cancer he would have realized that Ct scan waiting time is part of his warpped space-time continuum.

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

Dear friends

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.

Love,
Elsa

Saturday, January 30, 2010

Catarina never said a word, but she always spoke to us.



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.

Hard?

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.

Yes
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.

Bye"

Sunday, January 10, 2010

...and this is part of a "book" Maya wrote when I had surgery #7, two years ago.



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

Lhasa's music

It was 21 months ago that I did my shaving-head video and used Lhasa's music. With the news of her premature death on New Year's Day, I found out that she was diagnosed with breast cancer exactly 21 months ago. It is a sad coincidence and I wish the end of her battle with cancer could have been different.

Gracias Lhasa. More about this great singer-songwriter here. video

Monday, January 4, 2010

a post for Rajiv

Rajiv
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.

My Dad has a new Blog


Dear everybody, It is Maya reporting to you that my dad has a new blog!!!!!!!!!!!!!!! It is called:
The Intentional Sketcher. Enjoy it!
Adios Lhasa.

When my lifetime had just ended
And my death had just begun
I told you I’d never leave you
But I knew this day would come

-I'm going in, Lhasa