Thank you Carmita.
Thursday, October 30, 2008
Wednesday, October 29, 2008
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".
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.
Tuesday, October 28, 2008
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.
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.
Saturday, October 25, 2008
Friday, October 24, 2008
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."
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.
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.
Wednesday, October 22, 2008
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.
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.
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