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.

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.

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."

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.

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.

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

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"