Dear Maura

Besides missing you terribly it was not so bad.
Zé took this photo in a restaurant in Little Korea. I had a four hour break between two blood draws so I walked from 53rd to 32nd. Not bad for a first day of a study. I am already home. Hard to believe that New York is suddenly so close.

(Maura is my dear Research Nurse at Dana-Farber)

Capítulo 4: O mito de Sísifo

"No último capítulo, Camus esboça o mito de Sísifo, que desafiou os deuses; quando capturado sofreu uma punição: para toda eternidade, ele teria que empurrar uma pedra de uma montanha, até topo, a pedra rolaria para baixo e ele novamente teria que recomeçar tudo. Camus vê em Sísifo o ser que vive a vida ao máximo, odeia a morte e é condenado a uma tarefa sem sentido, como o herói absurdo."

"posted" pelo meu amigo Miguel S.
(Miguel, desculpa-me mas nao resisti e estou a "postar" por ti)

All the way from Virginia

they came and just to bring a smile to my face.
Thank you Carmita.

Massimo Vignelli recently updated his 1972 iconic New York City subway map.

Yesterday morning I took the Lexington Ave (green) line from my uncle's house, got out in Grand Central (42nd) and walked 10 blocks (on Madison Ave). There was a stop on 51st but I wanted to walk. In the afternoon I took the E (blue) line from MSKCC (53rd) to Penn Station (34th) where I took the the 5h40 train to Providence. I'm posting these notes and Vignelli's map because I know I'll need it when I get "mental fog".

another one

oops I wrote all over this blog that I was going to start R7112. It turned out that I signed a protocol for another study drug. I am not even going to talk about it yet. It is better to wait for Friday, when I am scheduled to start the trial.

from 53rd St

I am on the 5th floor of the Rockefeller Outpatient Pavilion. It is raining. I am glad it is raining. This way, I don't feel bad that I can't go for a walk on 5th Ave.

The waiting room is packed. It is a good sign, I think. It is a sign that we are surviving. Or is it a sign that too many of us have cancer?

I just did a CT scan and now I am waiting to see the doctor and sign the protocol. I must tell you that I behaved and I drank all, well almost all, the contrast bottle they gave me. I drank something called Raspberry Ice Crystal. It tasted better than the Berry Smoothie.

The wait seems to be long for everyone. I hear some patients complaining that they have been waiting for two hours. Today must be one of those crazy days. But can you believe that there are computers with internet access for patients in every (except the 8th) floor? Not bad.

Maya e Cláudia

I just voted

I have been so busy trying to arrange everything in order to start my next trial in peace that I forgot that I would be away from my home state on Election Day. It was only when I heard that November 4th was probably my first day of R7112 that I panicked. I thought that it was too late for an absentee ballot.

Still, I decided to call the Elections Commission in my town. It turned out that casting an absentee ballot is a lot easier and faster than I thought.

The whole process took me 15 minutes. I drove to the Town Hall. I filled out an application for an absentee ballot. The clerk gave me an absentee ballot. I voted. I gave the sealed envelope back to the clerk. I Drove back home.

I didn't even use the "cancer card."

cancer metaphors

Journalists use military metaphors when they talk about cancer. You read it on the news all the time. There is a war on cancer going on, at least since Nixon declared it. In this war, cancer is the enemy. Tumors are targets. Doctors generals. Chemotherapy, radiation and surgery are the weapons. I guess nurses are the soldiers and the war strategists are the scientists who develop the new drugs. Our care givers are our allies.

We, the cancer patients, are often described as (war) heroes, victims or survivors. I would say that we are more like Prisoners of War. At least that is what I feel like sometimes.

Even though I have also used these war metaphors, I am not sure they fit.

Often my friends describe me as a hero, a warrior or a fortress. With such kind words, they give me strength, that's true. How can I disappoint them?

But I am not a hero. And I certainly don't feel like one.

Pronto, já passou ;)

It is true, I had a stressful week and it turned out that it was all due to a computer error.

To make a long story short:

The office of my oncologist at Sloan-Kettering (MSKCC) wanted to schedule my appointments (to sign the protocol, CT scan, etc) but MSKCC Financial Services had my account "on hold." The account was "on hold" because they claimed that they had not received any authorization from my insurance. On the other hand, my insurance guaranteed me, every time I called, that they had sent the authorizations/referrals to MSKCC.
I was caught in the middle of this, along with the secretary at my primary physician's office who was trying hard to help me out. I could see that it was obviously a communication problem. If my insurance and the hospital spoke to each other directly they would resolve everything. However, whenever I tried to give the name and telephone number of the person in charge of my case at my insurance to MSKCC Financial Services, they would just cut me off saying: "No we don't want the number, you can call them and tell them to fax us the authorization" or "we'll call you back." I guess it must be a New York thing or perhaps I have just been spoiled by all the attention they give me at Dana-Farber, but the end result is that I became really frustrated.

And this went on for six days.

When a patient advocate from MSKCC called me on Monday, I had reached my limit. I raised my voiced when she kept telling me that my insurance had said NO to my authorization request. I know that, unintentionally, I yelled the name and phone of the person in my insurance that they had to talk to, so she had no choice but to write it down and call my insurance and that's when we all found out that there was a mistake in the system. It turned out that every time the hospital called the insurance a recording would say: "patient has exhausted the authorization." But they never talked to anyone directly.

Patient IS exhausted! That's what I would say. There has got to be a better way to resolve these types of issues .

At last, however, everything got resolved. All it really took was, in fact, a phone call from MSKCC to the insurance person.

I'll sign the protocol on the 28th after doing a CT scan and then start the treatment.

It is a beautiful Autumn morning and what I really want is to go for a walk... but I must stay close to the phone. I must wait to hear from NYC. I must wait wait wait wait wait to be told when I can start. Come to think of it, cancer patients do a lot of waiting. For the last two months I have been basically waiting. I should have bought an around-the-world plane ticket...

In the beginning of August I asked my Health Insurance for an authorization to allow me to start the R7112 clinical trial at MSKCC, a hospital outside my network. This trial from Hoffmann-La Roche is only offered in 3 states: Colorado, Texas and New York. I confess that I did not have a lot of faith in my HMO. I was basically waiting to hear a NO. Once I heard a NO I would appeal. With my cancer curriculum I thought it would be easy to show the health insurance that they will benefit if I find a treatment that works... and so I continued to wait for the negative answer in order to appeal. I waited all of August and all of September.

When I gave up waiting to hear from my insurance, as I was ready to start STA 9090 at Dana-Farber, E. from my primary care physician called.

"Elsa they said YES you are all set to start the trial in NY."
"MY insurance said they would cover the costs?"
"YES."

Coincidently at the same time the oncologist from Sloan called to let me know that there was an opening in the study... (yes we also wait for a spot on the trials)

I told her I was ready to start immediately, my insurance had said YES.

You might ask why I am still waiting, why I am still at home. Why haven´t I packed? . Why am I still gardening and thinking of walks?

That will be the next post. Right now I am going to take a walk and forget the phone.

Now can I convince you to come for some tea?

lemon verbena

It is that time of the year

... when I want to bring the garden inside.
Obrigada Zé

lemongrass, thai basil and parsley

"Now the flames they followed Joan of Arc..."

Encontrei. Agora so estou à espera que o Rui escreva a carta de recomendaçao!

I found the place where I want to stay in New York City. It is a nunnery called Jeanne D´Arc. My friend Rui, who knows me since I was 10 years old, says that they will not accept me there ;).

My long and "bery" sweet break (since surgery in June) is coming to an end. I spent the Summer preparing my body for the upcoming combat (with a balanced diet, exercise and relaxation) and now I am ready to return to the battlefield (this time in NYC). The Hope is that R7112, my new weapon, will target the MDM2, and get my wild P53 to work and kill my cancer cells.

:))) this is how I understand the Nutlin-MDM2-p53 diagrams my oncologists, Dr. Jeffrey Morgan and Dr. Geoffrey Shapiro, patiently drew and explained to me.

useful links

when you have cancer treatment far from home:

New York City
Miracle House (you need a caregiver staying with you and book a month in advance)
ACS-Hope Lodge, Jerome L. Greene (you must be referred by your medical center's social worker)
Sloan-Kettering Accomodations (more expensive than the hotels I can find on Hotwire)
Joe's House Lodging Guide for MSKCC

Boston
Hospitality Homes
AstraZeneca Hope Lodge (opening November 2008)

Across USA
National Association of Hospital Hospitality Houses Inc.
Joe's House
American Cancer Society Hope Lodges
for children: Ronald McDonald House

for me this is poetry

Shapirogram


Morgangram

first (50) days

Para ti Maya.
For Maya, who taught me to live
one hour at a time.



(Everyone knows that Maya is really spoiled by all of us...
this video, of her first 50 days, might reveal why we just can't help it).