Welcome to 1 in 9: The Long Island Breast Cancer Action Coalition

WE MUST TURN OFF THAT SWITCH

By Geri Barish
1 in 9 President

Nine years ago, the LI. Breast Cancer Study began. This was supposed to be a five year study that would cost 5 million dollars. Al D’Amato and Congressman Peter King worked valiantly to get this study and the funding. Now, nine years later and 28 million dollars we still don’t know what the results are. The study has been completed. The Prime Investigator no longer lives here and we are still waiting for the results to come in. True, we were told that some of the results could take 10 or 20 years but nothing, and Congressman King is still fighting for us on the federal level.

While we await results, not only is breast cancer staggering in numbers, but childhood cancer, prostate cancer, brain cancer, cervical cancer and cancers that are supposed to be rare are on the rise.

The Human Genome Project (the blue-print of our body) tells us many things. The interaction of our genes and our environmental exposures is what sets the stage for the majority of disease development. There are many environmental factors included in the gene factor that need to be studied. There are many studies underway including those of pregnant women for the purpose of assessing environmental and other exposures during pregnancy. This is just a touch on the many studies that are going on.

So what is happening today while we sit and await the answer? We now know that the pesticides that we have been complaining about for so many years have been found in our water after some testing in Suffolk County wells. There are many things that we know are suspect and so many things we have fought for so long that will come to fruition. The one thing we don’t know is how to turn off that switch. The switch that makes us become a statistic, a number and changes our life forever.

Here are some of the facts. This year, 1.3 million Americans will be diagnosed with cancer. That is 147 people per hour. One in every two men and one in every three women will develop cancer in their lifetime. 565,000 Americans will die from cancer this year. The cost to the United States economy is 107 billion dollars in medical research and lost productivity each year. I’m told that despite these staggering statistics, the United States government spends only one cent on cancer research for every ten dollars it collects in taxes. The United States only provides funding for certain types of proven research projects. We must take risks to overcome the magnitude of this disease.

Recently, myself and two others met with a member of the NCI. We went to request a commitment from the National Cancer Institute to support the mission of increased spending on cancer research, especially for high risk ideas with scientists who have a proven track record.

We must find out how to TURN OFF THE SWITCH.

Only through solid research can this happen.

No one thought they could do it for polio. We need to do it now for cancer. Three people — two with cancer — how disappointed we were to look at the NCI’s budget and find out that the wish list is for only five billion dollars. These funds are spread out too thin. We need more research dollars to stop cancer from gobbling us up. As we were told at the NCI there are many diseases that the President’s budget must address and we certainly understand that. We only want our share of the pie.

WELCOME TO THE SENATOR NORMAN J. LEVY
MEMORIAL RESOURCE LIBRARY

Looking to find the latest statistics on breast cancer? Are you researching a particular topic and you don't know how to find it? Would you like to locate various web sites that would help you or a loved one?

Look no further... the Resource Library is open at Hewlett House—and you are invited to come in! Named after New York's esteemed late State Senator Norman J. Levy, a long-time supporter of 1in9 and breast cancer issues, the library contains books, monographs, audio & video and other important documents on breast cancer & other related cancers.

Additionally, volunteer medical librarians will be available by appointment to assist those who might need specific topics researched (such as male breast cancer, genetics, fertility, etc.).

Our internet resources are abundant as well. We can access the latest information about cancer from the top hospitals around the country, all major newspapers, medical journals, local, state & federal government and other topic-related sites such as nutrition, fitness and wellness.

New York State First Lady, Libby Pataki, attended the event and expressed her support for the project, calling it “a gallery of courage.” The event was hosted by South Nassau Communities Hospital, Several of the hospital’s

Dozens of breast cancer survivors on Long Island had their photographs taken, producing three panels of pictures. 47 more panels of survivors’ pictures are needed to complete New York’s 100-floor span.

THE DOTS DON'T CONNECT..... .... ... ..
By Geri Barish, 1 in 9 President

In 1974 my son Michael underwent radiation for Cancer. I used to listen to his stories of how he was able to imagine different things in order to make the time pass while he was getting his treatment. In 1986, on August 23rd, Michael died. Complications from all the radiation he had. Today, for his stage cancer they would only give 8 to 10 radiation treatments, back then they gave 52. The damage to his heart and lungs was so severe that he was rejected for heart and lung transplants.

On the day of Michael's funeral I was to start my radiation treatments. Knowing how much he loved life and trusted the medical profession he would have been devastated if I didn't follow the course of treatment that my Dr. recommended.

A week later I started the same treatments. I remembered the stories he used to tell. How the dots in the ceiling panel would tell a story. How they never seemed to connect. How he found two that had mishaped bodies, so he called one fat and the other skinny. He said the skinny one was losing all the bad cells to the fat one, that's why the fat one was gaining weight. He was only thirteen and in his mind he looked at those dots as cancer cells. The game became a maze, it was who could find his way out first. Fat was trying to get out of the maze so that he couldn't eat up all of skinny's cancer cells before it was too late or full.

In 1987, I developed breast cancer once again — this time there was chemotherapy and more surgery. Seven years of Tamoxafin, fighting for more research, fighting to find out why the dots don't connect and finding out that nothing has changed.

It’s now sixteen years later. We have spoken out in the halls of Albany, the White House, through the media. We’ve marched, cried, rallied, done outreach and educational programs and changed public policy. We’ve increased research dollars, raised the conscience level, and created an awareness of information about breast cancer that has almost moved mountains.

But the dots still don’t connect.

Every morning at 7:45 am I sit in a room waiting to be called for radiation. The same room I sat in sixteen years ago. There are people that wait along with me. Young, elderly, male and female. The faces of fear and the unknown.

The same questions that I asked in 1974, and 1986 are still being asked now.

You make light conversation before everyone tells of their story and then we compare. Your name is called and you go into the dressing room. You put on your gown, hoping that the one you pick from the pile will not be worn through or so washed out that it will give you some privacy. You grab your purse and pass the waiting room, give a quick smile to the people you just left and approach the large door that says “Warning: RADIATION.” It reminds me of a big warehouse door. The technician and nurses are warm and kind as they get you on the table. The table with a sheet covering it is long and cold. You put your arm in a holder and down goes your gown. Just like so many years ago — no dignity, no privacy, no shame. You lie down and look up to the ceiling as they match up the machine to where the radiation is to enter your body.

To no surprise, I found fat and skinny. They had never left. After all these years, they’re still here. The technician leaves, the lights go dim and you are alone. You stare at fat and skinny and wonder if you 'll get out of the maze this time. Then, you hear the sound. If you ever rang a button in an apartment building and heard the buzzer to let you in, that's the sound of the machine. It's a long sound and that's when the radiation is entering your body. You try to find fat and skinny and then suddenly the buzzer stops. Here comes the technician to change the machine for the next entry on your body. Another buzzer and you know soon it will end until tomorrow at at 7:45 am. And you know that fat and skinny will be there waiting for you.

I write this because after all these years, nothing has changed.

Sure, new treatments, early detection, and all the things that we as activists have been preaching.
But the dots still don't connect. We are still being burned, scarred and cut. We still suffer the indignities and embarrassments.

We need to continue to fight even harder for research. Research to find out
how to turn off that switch. We need to stop it before it develops.

We need Research. I beg our President to put more money into research. Proven scientists to do the work. They did it with polio. We cannot afford to wait much longer. There are great research institutions. Cold Spring Harbor Laboratory right here on L.I. is doing wonders in cancer research.

We need everyone’s help in fighting this injustice. We must insist our government push for more research in genetics to find out how to stop and prevent this insidious disease.