Friday, February 27, 2009

my cognitive impairment

see what I was telling you about my brain? I missed ALL the pre-sales for Leonard Cohen´s concert at the Wang Theatre in Boston (on May29th).

I can't think straight, my mind is foggy, fuzzy, confused, I can't stick to one task, the circuits in my brain don't seem to connect, I get up to do one thing and I forget and the list goes on. Don't tell me chemo brain is not real. It is real. Many times I feel like I have cumulative side effects from 8 years of treatments.

I also missed the New York concert because I forgot...

Ah and DON´T tell me that I have always been this way!

I am on a high calorie diet

(When gaining weight is not easy I turn to friends and the nutritionists at Dana Farber. Here is some great advice on how to improve your calorie intake. I gained a few pounds, I am now 83.5 pounds).

Come umas papas cerelac ao pequeno almoço e ao lanche (há aí nos EUA?)
how about butter... butter with everything! eggs whites are good too, because of high protein.
E chocolate belga, não gostas ?
MUITA CACHUPA!!!!!
Come, para engordar tens de comer.
come batata e Mc Donald´s.
nozes, azeite, queijo, massas...

Acabei de pesar-me e tenho 38 kg. Segui todas as dicas e ganhei dois quilos sem os saquinhos de areia nos bolsos para voares até Macau e lá é que vais engordar com as comidas da mãe e sem o bolo mármore da Rita...
mas com muita paciência do Zé que me atura quando eu desarrumo a cozinha, porque estou sempre a comer, e nao ponho a louça na máquina ;-)...

beijos GORDOS

mais sobre dietas para engordar aqui

Thursday, February 26, 2009

magic word- ShrunK

When my sarcoma friends get good news I celebrate. I am happy for them and for me. It is even better when they are on the same trial as I am.
Kathy is in Chicago and she got EXCELLENT news yesterday.

"EVERYTHING SHRUNK AT LEAST 20%!!!!
I was soooo happy.. I got up, I hugged the trial nurse and the Dr. while practically crying because I've gotten such limited good news since this whole adventure began in 2006!" more here

Card Blue also continues on the study.

We went to New York late last week for a CT scan marking my completion of the first six weeks of brivanib. The scan showed that my tumors have grown by something like 5 to 8 percent, which falls within the margins of stable disease, so I will continue on the study for at least another six weeks. more here
Lately, it feels like I have most of the possible side effects related to Brivanib.

I am feeling: fatigue, weakness, higher blood pressure, loss of appetite, diarrhea, weight loss, dizziness, lightheadness, headache, dry mouth and (some) confusion.

The fact that the court canceled my jury duty yesterday was a good thing.

I think I am also coming down with another head cold...

I have been complaining a lot. I promise to stop when Spring arrives and I can return to my herbs and flowers.

Tuesday, February 24, 2009

Jury Duty tomorrow

I have been "hereby summoned to serve as a trial juror" commencing tomorrow at 8h30.... If I disappear for days you know where I am.

I am not going to request a disqualification (in other words I am not going to use my "cancer card"), I don´t want to be prevented from ever serving as a juror.

"A person shall be capable of performing juror service if he or she can perform a sedentary job requiring close attention for 6 hours a day, with breaks in the morning and afternoon, for 3 consecutive days. If the disability is permanent, the physician must identify and describe the disability, explain how it prevents you from ever serving, and state specifically that you will never be able to serve as a juror."

The clinical trial makes it hard for me to pay "close attention" for more than 10 minutes. Michelle, Iris and others on anti-angiogenic drugs can tell about the effort we have to make to concentrate...

On the other hand, they must feed us a lot of donuts during the breaks. Maybe I will even gain a few pounds while I am locked inside a Massachusetts courthouse.

Or do we have to pack our lunches?

I think I´ll be alright and besides when I worked as a freelance court interpreter I once had to tell the judge: I am sorry Your Honor but the interpreter had a blackout, could the defendant repeat what he just said.

Another time, I was eight months pregnant and I had a contraction. The trial stopped for a few minutes for the interpreter to rest.

So, being a little spacedout might pass.

Saturday, February 21, 2009

lack of appetite

I hate it when I loose the pleasure of eating.
S.O. S. any suggestions for a
high calorie
diet?
I have been trying to eat but nothing tastes good. After the first bite I don´t want to continue.
Last week, a friend told me to just eat at Mc Donald´s. I have done that. I ate yesterday and today (!!!!!!). Two days ago I even ate pizza for breakfast! But the scale does not reach 40 kilos! Instead I am down to 36 kg (80 pounds aghhhh)

I´ll continue this post tomorrow, I already took Brivanib and I don´t really know what I am saying... and I want to say something about the fact that my Body Mass Index is 15.6 and
I can not go to Macau like I planned. No one lets me go because of my weight!!!!!!!!!!!!!

beijinhos acabo amanha
kisses to everyone I´ll finish tomorrow

Friday, February 20, 2009

"It's been a long time since I stood on a stage in New York," Leonard Cohen said last night at Manhattan's Beacon Theatre. "I was 60 years old -- just a kid with a crazy dream."

Dreams do come true. Leonard will be in Boston on May 29th. :)))))

More on last night´s concert including set list and US dates here

(Zazá, you know this post is for you. Exciting things happening while you are in Playa del Carmen).

Wednesday, February 18, 2009

Lenord Cohen

this is Lenord Cohen -Maya
for Elsa Love Maya

Tuesday, February 17, 2009

Saturday, February 14, 2009

15th week on brivanib

I fall asleep almost immediately after I swallow, at 10pm, the four (mega) pills.
I am thirsty, especially during the night.
My mouth is dry. All the time.
I am spaced-out (ok, more spaced-out than usual).
Even favorite foods have lost all the appeal.
I write to-do lists and then I forget to look at them (Zé will say that that is my normal...)
Fatigue (this is hard to tell if it is a side effect since I no longer have a baseline, I have been feeling tired in the last years).

All these signs have been pointing to the fact that I am on the drug and not on the placebo. Yet, I was not a 100% convinced, until yesterday. If the drug company does a random selection I was bound to get the placebo. That was what I thought, based on the fact that I never win anything.

However, yesterday, when I had my vitals taken - blood pressure continues to be high, weight continues to decrease - I became certain that I am still on the drug.

Yesssssss. I am one of the lucky ones.

When I do the decisive CAT scan, in three weeks, I might have to stop Brivanib, since the tumor growth has been close to 20 percent. Still I am happy. At least the pattern where my tumors did not respond at all to the drugs has changed. Who knows, perhaps the tide has also changed.

Happy Valentine's Day


Friday, February 13, 2009

Elsa's coffee thing

We are at Sloan-Kettering today. The weather outside is not half bad. It's a couple of degrees above zero (celcius, that is) so I'm thinking Summer.

We slept in Stamford, CT, before heading into Manhattan this morning and stopped at Pax, something or other, for breakfast. Good thing it was Elsa's idea (I wanted a full fledged Korean breakfast) because their coffee had a hint of hazelnut, a faux pas in Elsa's eyes, and then she made me buy her an expresso, which was charred, according to her. I've been married to Elsa for over sixteen years now and not once did we ever go into a coffee shop and drank a coffee that she liked. I can tell there is disaster in the making as soon as she takes a wiff. Her nose twists and turns up and ... Well, actually she tried a coffee at Tim Horton's the other day and she liked it. Go figure.

Anyway, the bump in temperature has us in a good mood.

Friday, February 6, 2009

Zé posted this in his blog, I copied and I am posting it here..it is a bit long but he was inspired ;)

Elsa has been reading, and sharing with me, a book by Susan Sontag's son, where he describes his mother's ordeal in her last stages of dealing with cancer. This, combined with the recent passing away, also from cancer, of a dear cousin, and the different ways each dealt with, what turns out is a a similar take on a terminal condition, prompted a short but I think very insightful conversation today.

This morning Elsa told me that she understands why when people face a terminal condition they sometimes seek the intervention of faith healers and the like. Her thought is that for many people, rather than suffer the agony of certain death with an uncertain timeline, they choose to keep hope alive, to believe that, until it is literally impossible to do so, there is the possibility of changing their situation. Although some do it by continuing to press for medical treatment and others by seeking a faith based healing alternative, what is common is the unwillingness to give up. Contrary to those who resign themselves to waiting for death.
One particular insight that she shared, concerns the role of doctors in making a patient feel better. The thinking is that many doctors are trained to administer medical treatments to patients, but falter when those are no longer working, or they think they will no longer work. When this situation arises, when they put their patients on palliative care, for a patient who does not want to spend the last days consumed by depressive thoughts of impending doom, such course of action is of no use. At that stage, people who do not believe in giving up, who do not want to wallow away the last days consumed by desperation, may turn to the only people which offer a solution (hope)- priests or faith healers, or even a combination.

The way Elsa sees it, this should not be this way. Dealing with a patient until the end, offering hope until the end, should be the purview of every doctor. And it makes sense, I think. The fact is that every medical treatment, every surgery or procedure is without guarantee. People can unpredictably survive the most harrowing of situations and they can unpredictably die from the most innocuous of procedures. In between, there is a vast field of situations where survival or death occur with a fair degree of predictability. The common thread is, however, uncertainty. There is never a one hundred percent level of certainty. For this reason, patients should never be abandoned.

Elsa describes vividly, situations where a doctor's touch, or words, completely changed how she felt at a particular point in time. She points out an instance in one of her initial surgeries, when she woke up in a state of agitation, which was exacerbated by the inability of the doctors and nurses in the intensive care area, at Memorial Sloan-Kettering, to realize that no medication could resolve her situation. Then her surgeon, Dr. Brennan, came in and with a simple touch and a few words, resolved what a room full of doctors, nurses and very expensive technology could not do. Did not know how to do. Another time, this time in Boston, she had an unusual and particularly hard time after surgery. Her surgeon had to go away immediately after operating on Elsa, and she was left under the care of a team of doctors, who unfortunately could not deal very well with Elsa's post-surgical situation. She could not eat, she was connected to tubes, some doctors speculated that she may never be able to eat again. The situation deteriorated, to the brink of despair, until an intern, from Iceland, seemed to detach herself from the obvious dead end experienced by the other interns and as a human being, as if with magic, talked to Elsa and offered her a way out of the rut she was in. On yet another occasion, surgery coincided with Maya's birthday. Maya had been asking for over a year for Elsa not to miss her birthday. Still it could not be avoided so the disappointment sent Elsa into a depression. Elsa's surgeon, Dr. Bertagnoli, heard about it, and made a point to, very late in the day, just before she left to her family, came in to give Elsa a hug, a kiss, to talk about the surgery- to provide some true caring. Enough of a gesture to immediately turn the situation around.

My thought here is that doctors are not being trained fully. There is a missing component that some learn, or apply on their own, but that the vast majority misses, maybe because it is not taught, or maybe even, worse, because it is untaught in medical school.

The point is that there is a dimension of interaction, a missing component of care, which doctors are missing; and that faith healers are offering.

My theory is that back in the old days, faith healers, priests and the like, were the ones offering people relief from what ailed them. Medicine eventually proved much better adept at providing this relief and displaced the original providers. But not completely. Why not? Because medicine short circuits itself by dis-considering that mainly non-physical component of need, of relief, which people have, but which doctors are not trained, or are perhaps even dis-trained, to provide. And because medicine does not provide it, priests, faith healers, and the like, fill the void. In other words, doctors and medicine fail for not considering all of the human being and all of it's human needs.

It should not be so.

Maya's Cooking Show - episode 1

Fruit Salad (practice)
video
Dear Kara,
You were her inspiration when she was five years old. One day as we were flipping channels I found your Kara's Kitchen, so I told her you were my friend from College. With a huge smile she asked me: you know someone on TV? The next day she decided to create her "cooking" show ;) video

Thursday, February 5, 2009

Dr. Brennan operates Justice Ginsburg (click)


Voi che sapete che cosa è amor,
donne, vedete s'io l'ho nel cor.
Quello ch'io provo vi ridirò,
è per me nuovo, capir nol so.
Sento un affetto pien di desir,
ch'ora è diletto, ch'ora è martir.
Gelo e poi sento l'alma avvampar,
e in un momento torno a gelar.

my herbs

rosemary . alecrim

scented-geranium . gerânio ou sardinheira

thai basil . manjericão tailândes

lemongrass . erva-príncipe

lemon verbena . lúcia-lima

Monday, February 2, 2009

Groundhog Day



I (Punxsutaweney Phil) saw my shadow, sorry everyone, continue to hibernate. We get six more weeks of Winter.

HAPPY Birthday

Today is Elsa's Birthday.