Sunday, September 21, 2008

A Peaceful Piece

Someone posed a question on the No Surrender Survivor Board asking if cancer changed you in the long run. Are you anything like the old you?

I will post my answer here too- because it really has.

The old me used to be scared a lot. I would wig out at little things and would let certain opportunities pass me by out of fear or inertia.

I also seemed to take for granted that the people I loved would be there forever.

I was restless.

Impatient

And dumb as a post.

Today, seven years later, I have found a peace in me that I never had before.
I may be nervous about doing something but instead of passing it up I do it anyway... and discover I have fun and why in hell wasn't I taking chances like that before?

I don't say no to that BBQ or party because I would rather hang out at home. I go.
I don't think, well I couldn't possibly start that project or business opportunity because it would never work- now I say- what do I have to lose- just do it. Which may account for the fact that we are now a 501 c 3 non- profit organization and hold the Unites States Trademark for
"No Surrender."

I take my time with people I love and let them know they are special to me.
I am not restless anymore.
The only time I am impatient is when I see that I or someone here is not getting proper care- but instead of stewing about it now my newly uncovered Norma Ray comes out and I make a stink- in the nicest way possible of course!

And I still may not be able to do math or figure out a sense of direction- but I am not dumb anymore when it comes to being my own advocate- much to the chagrin of my medical team.

I played hooky one day last week and went to the ocean. I live on Long Island Sound, which is lovely, but sometimes you just need the crashing waves of the Atlantic. So I went across the island and settled in a dune that had been created by the outgoing tide. It was only a small patch of dry sand but it was cool to have a sand dune behind me like a little bunker and the entire span of the ocean in front of me. The waves were huge because of the after effects of hurricane Ike.
And I ran in and out of them and felt like I was a kid again. The ocean can make you feel like a little kid no matter how old you are.

As I stood in the sun and surf it occurred to me that one year ago exactly I was completely bald... in the middle of chemo... had painful expanders... still had several months of chemo ahead of me and then radiation... and here I was:
Hair on my head. Treatments over. Looking like every other person on the beach.

I was overcome with such gratitude and joy. I said out loud, THANK YOU to God and my guardian angels and to the earth for getting me to this place in time.

I may go home and find out I have to start chemo all over again- but for that moment I could honestly say I did it again. I went through chemo a second time and for the second time I came out the other end in one piece. A grateful, humbled, peaceful piece.

So yes, Cancer changed me. For the better.

Saturday, September 20, 2008

Beware False Cancer Cures

This is so important...
We are bombarded with so much information when first diagnosed, some "cures" sound too good to be true.They are.
Released by the Federal Trade Commission Friday, September 19, 2008

Feds Target Bogus Cancer Cures

The Federal Trade Commission (FTC) in the United States is cracking down on companies and individuals who through deceptive advertisements say their products cure or treat cancer while offering either no proof, or quoting false clinical evidence in support of their claims. The FTC said it had invoked 11 law enforcement actions under the FTC Act that bars deceptive claims.

The products affected include "essiac teas and other herbal mixtures, laetrile, black salve (a corrosive ointment), and mushroom extracts" said the FTC in a press statement released on Thursday.

Director of the FTC's Bureau of Consumer Protection, Lydia Parkes, said:

"There is no credible scientific evidence that any of the products marketed by these companies can prevent, cure, or treat cancer of any kind."

6 of the 11 complaints are expected to be resolved by proposed settlements, the others will be prosecuted.

All the companies and persons involved are required to tell customers who bought the affected products that there is no scientific evidence of their efficacy in treating or curing cancer and they should see their doctor about it.

Parnes said many of the products are "scams", and consumers should talk to their doctor about any treatment they are considering before they take it.

"When you're battling cancer, the last thing you need is a scam," said Parnes.

The crackdown started in June 2007 with a sweep of the Internet by the FTC, the US Food and Drug Administration (FDA) and Canada's Competition Bureau. The agencies emailed warning letters to 112 website between August 2007 and January 2008, which caused 30 sites to close or remove the unfounded claims. The ones that did not do this were then reviewed again to decide whether they should be prosecuted under the law or referred either to the FDA or the Competition Bureau.

The FDA sent warning letters to 23 companies in the US and 2 individuals outside the US, stating that their products were in violation of the US federal Food, Drug, and Cosmetic Act because they were claiming they could "cure, treat, mitigate or prevent cancer", and were not proven to be safe or effective as per their label.

The Competition Bureau in Canada also sent similar warning letter to companies in Canada.

The FTC said nearly all the companies have now corrected their advertising material and the agency will take further enforcement action to pursue the rest.

The companies and products involved include:
  • Alexander Heckman d/b/a Omega Supply: laetrile (can cause cyanide poisoning at high doses); hydrazine sulphate (a potential carcinogen); cloracesium (contains celsium chloride). In this case the company is accused of making making false claims that the products prevent, treat and cure cancer, and also that scientific evidence exists to support these claims.
  • Native Essence Herb Company: herbal concoctions (Rene Caisse essiac tea blend and cat's claw), the herb chaparral (classified as unsafe by the FDA in 1992 because of links to toxic hepatitis), and maitake mushrooms extracts. The company is accused of making false claims that these products treat and cure various cancers, shrink or eliminate tumors and prevent breast cancer.
  • Daniel Chapter One: various herbal formulations plus shark cartilage. This company is accused of claiming the products prevent, treat and cure cancer and that their herbal products mitigate the side effects of radiation and chemotherapy.
  • Gemtronics, Inc: RAAX11 (made of chrysobalanus icaco, a derivative from a tropical bush, and agaricus, a medicinal mushroom). This company is accused of falsely claiming the product prevents, treats and cures cancer, and that there is scientific proof of this.
  • Mary T. Spohn d/b/a Herbs for Cancer: various types of Chinese herbal teas. Accused of falsely claiming they fight 16 different types of cancer. Another type of blended tea claimed to be a "special formula" for "cancers not our list". Also accused of claiming scientific evidence exists of the effectiveness of the products.
  • Nu-Gen Nutrition, Inc: cantron (electrolyte liquid), apricot seeds (containing laetrile) marketed as treatments and cures for various cancers. The company has agreed a settlement based on sales of the products, pending outcome of financial investigation.
  • Westberry Enterprises, Inc: the FTC said the company marketed "herbal tea containing burdock root, sheep sorrel, slippery elm bark, and Turkish rhubarb root; melatonin; a woody vine found in the jungles of Latin America that is known as cat's claw; saltwater blue-green algae; and a mixture of roots, leaves, and barks from various plant". They were accused of claiming these products could treat and cure various types of cancer. They have also agreed to pay a settlement based on product sales that is pending outcome of a financial investigation.
  • Jim Clark's All Natural Cancer Therapy: marketed metabolic therapy products (laetrile, apricot seeds, digestive enzymes, okra-pepsin-E3, and coral calcium) claimed to prevent, treat and cure various types of cancer. The two individuals concerned have agreed to pay a settlement, which is pending outcome of financial investigation.
  • Bioque Technologies, Inc: extract from the soursop or guanabana tropical fruit tree, and another product, Serum GV. Their advertisements claimed these could prevent and treat melanoma. They have agreed a settlement to pay the full amount of sales of these products in redress.
  • Holly A. Bacon d/b/a Cleansing Time Pro: black salve (a corrosive in tablet and salve form that has been reported to cause severe burns and permanent scarring in high concentrations). The organization is accused of claiming that either form of the product can prevent, treat and cure various types of cancer, and Holly A Bacon did not reveal that she, the owner of the company, was the "satisfied user" quoted in the advertisements. Other claims made for the product, said the FTC, include ability to treat and cure viral infections such as HIV, SARS and Avian Flu.
  • Premium-essiac-tea-4less: essiac tea. The organization is accused of claiming the product was an effective treatment for cancer, AIDS, ulcers, hepatitis C; and many other diseases. According to the FTC, their advertising recommended that "a daily intake based on whether the consumer is well, sick with cancer or another disease, trying to prevent a relapse of cancer or another disease, or currently undergoing chemotherapy or radiation."
The FTC has launched a new website at www.ftc.gov/curious to raise awareness about bogus cancer cures. The site explains how to recognize and report bogus claims that they see on the internet, and urges people to seek professional advice if they are considering trying any products themselves.

Thursday, September 11, 2008

That Day

The bluest sky I ever saw
Soft September air
Bright Sunshine
Primary day.

Traffic moving well said the radio

The roar over my head
Going inside and not thinking about it
Giving my name to the receptionist

A small plane has struck the North Tower of the World Trade Center said the radio

A secretary screaming into the phone
"Is mom OK?!"
The word is spread through the waiting room
A security guard appears

Another plane has struck the South Tower of the World Trade Center said the radio

The doctor telling the staff to cancel all appointments
The security guard tells us no one can leave
I looked for the exit

People are jumping from the upper floors said the radio

Standing with others on the sidewalk
No one knowing what to do, where to go
My father walking swiftly towards me
Let's go

Manhattan is in lockdown said the radio

We decided to try uptown
Getting on the Triborough Bridge
We were alone
We stopped the car and got out and looked

The South Tower is down said the radio

Smoke
Black, white, gray and then pink
Lower Manhattan smoldering
What has happened to our city?

Planes are still unaccounted for said the radio

My father looking up
We have to get off this bridge
Where are we going to go?
What is happening?

The Pentagon has been hit said the radio

Why doesn't the air force shoot down the planes?
Is that a fighter jet?
Where?
There.


A plane is headed for the White House said the radio

Try the phone again
Is Tommy OK?
Drop me off at my car and head home
Your car is at the airport

The North Tower has fallen said the radio

Drive safely
Hurry and get home
Don't stay on the open road too long if you can help it
I love you


All planes have been ordered down said the radio

No cars
Anywhere
I am alone on the eastbound lane
Inbound is at a standstill.

The President has announced it is a terrorist attack said the radio

The emergency lane westbound
Volunteer Fire Companies
Long Island is coming
Dumptrucks, earth movers, cranes
Help is on the way


Possibly 30,000 people dead said the radio

Getting home
Seeing on TV what happened.
Has anyone heard from Tommy?
I can't get on the bridge to Connecticut
They have it closed, I am coming to your house


A plane has crashed into a field in Pennsylvania said the radio

Dad is here
We watch the coverage
We try to comprehend
Tommy is home and OK
What is going to happen?


Mayor Giuliani is going to speak said the radio

The President arrives back in Washington
He speaks to the nation
They may have attacked our buildings, but they did not touch our resolve
We are one
We stand together


There are no survivors said the radio

People reaching out to people
Solidarity
Strength
Anger
Have you seen this person? Worked on 97th Floor North Tower

Aujourd'hui, nous sommes tous les Américains said France

The calls coming in
Her husband
His brother
My friend
Our cousin
We will never forget you

Americans are forgetting the events of September 11, 2001 says the radio

She went to work
He was doing his job
He heard the fire call
They got on an airplane

They died for no reason other than hate against our Nation said the radio


The moment we forget the enormity of 9.11.01
Is the moment we forget those who died
Remember this day.
Forever.

In Memoriam 9.11.01


"You see, boys forget what their country means by just reading The Land of the Free in history books. Then they get to be men they forget even more. Liberty's too precious a thing to be buried in books. Men should hold it up in front of them every single day of their lives and say: I'm free to think and to speak. My ancestors couldn't, I can, and my children will. We ought to grow up remembering that."
Jefferson Smith
Mr. Smith Goes To Washington

WE WILL NEVER FORGET

Friday, September 5, 2008

Let me tell you about your cancer

It was a beautiful day. In fact, the day of the biopsy was one of those stunning days that make you wonder how on earth Labor Day could be the end of summer. It was Friday. My breast surgeon told me that "It was small" and "We won't know anything for a few days." I didn't know then that he already knew it was cancer. The frozen section had come back before I was even awake in the recovery room. I think he wanted to give me a gift, the gift of time to be me for just a few days longer. I will never forget the gift of those last, cancer free days .

A few days later, his nurse called me and told me I needed to come in. Now. I knew it couldn't be good news if he wasn't able to tell me over the phone. But the possibility still hadn't sunk in. I didn't know then what I was waiting to hear truly meant.

I sat down across from him. He turned in his chair to reach for a pamphlet behind him and said, "Let me tell you about your cancer." Cancer. What did he just say? I tried to write down what he was saying. I still have the paper. It made no sense. It was the less favorable kind. You mean there are good kinds of cancer? The survival rates are poorer than those with the "other" kind.

Five years didn't seem like it was in the cards for me. He gave me percentage points and I was not falling into the positive side of them. He said we would know more after the lumpectomy and lymph nodes were tested. But for now, I had cancer. He said to go home and not try to think of everything all at once because we still don't know everything yet. I got the feeling he was not waiting for good news to come out of further testing, but what did I know? I knew nothing about cancer except that people die from it and before they die they are made sick and tortured by scary drugs and they somehow cease being people.

I went to the city to see a specialist a few days later. It was the morning of September 11th, 2001. As I walked the streets in a self-absorbed, terrified daze, planes were flying overhead and ending the lives of thousands of people. Some of whom I knew. Suddenly, my cancer didn't seem so terrifying anymore. I was now afraid of the here and now. How would I get out of Manhattan? How many more planes were headed for the city? Does the NYPD have an air force?

And then there were the buildings. The billowing smoke was bad enough, but then they fell down. Someone said there could be 20,000 people trapped or killed inside. No one knew anything because the smoke and shattered steel was obscuring everything. The notion of "air pockets" was brought up. Surely there were air pockets providing survivors with enough oxygen until we could get to them. St. Vincent's hospital set up a huge outdoor triage to handle all the survivors.

There were no air pockets. There were no survivors. The doctors and nurses stood waiting with determined looks on their faces, but their eyes revealed the realization that they would not be helping anyone that day.

Then they started to come. As I was driving eastbound away from the burning city, the westbound lanes were at a complete standstill. Manhattan was in lock down. No one could enter. So the traffic backed up for miles and miles along the Long Island Expressway. But the emergency lane was clear. And they came. As far as the eye could see, truck after truck from every volunteer fire department on Long Island. There was a job to do and they were on their way. They weren't alone. Mixed in with the bright red of the fire trucks was another color- the bright yellow of the Catepillars and earth movers and dump trucks. Strangers from the small towns that occupy Long Island dropped everything and they were coming. Coming to help anyone who was in the pile. Nothing mattered except that we all stood together.

I changed that day. As I looked at the smoke that hovered over Ground Zero from a safe distance of a bridge heading home, I realized how lucky I was. I may have had cancer, but I had a chance to fight it. I didn't care how grim my prognosis was. I was going to fight it with everything I had.

I knew no one with cancer. I had no where to turn. But I had a computer. I was just getting accustomed to the internet then. I made a post on a breast cancer support board. Suddenly, like that beautiful line of volunteer fire fighters and construction workers, the responses came. I was told I wasn't alone. I was told what I needed to do. Strangers became my sisters. The fight became easier because I wasn't a lone soldier, I had an army.

From the darkness comes the best kind of hope. From misfortune comes the opportunity to become blessed. Helplessness can turn into strength and more. It can become a calling. It can make you into someone you weren't before.

That is what cancer did for me. In gratitude for the sisters who answered when I reached out into the dark, I did whatever I could to be like them. So I reached out to those newer than me. The seed was planted and I answered that call I could hear in my listening heart that it was my turn to do for others what was done for me. And in return? I have become a happier person. I have a great sense of peace inside me. I have friends, sisters, twins, all over the world now. They have touched my life and mean more to me than anything else has. I love my Band of Sisters and I have never felt alone or lonely since our hands were joined.

I didn't know back then what it meant when I heard the words, "Let me tell you about your cancer." But I do now. It means hope. It means love. It means strength. It means compassion. It means my family has just increased by at least two million.

The books and internet said, "Women with triple negative breast cancer have a poorer prognosis and will die sooner." So I wrote my own book. I started my own website. I fought a brand new cancer five years later for over a year and have been scanned to reveal No Evidence of Disease.

Let me tell you about your cancer... You can do this. You can make it through the horror of diagnosis. The surgeries are easier than you think. I have had all of them, I know. Seventy percent of all breast cancer is cured by surgery alone. Chemotherapy is not as bad as you are imagining it to be. I have had seven of them. I know. The number one side effect of chemo is: It Works. And then one day you will turn around and see it is all behind you and your life is waiting for you. You don't cease being a person. In fact, you become a person who contains multitudes. You may feel battered and beaten up, but you are courageous and strong. Stronger than you ever thought you could be.

As I walk around this life now and meet people who don't know about my cancer and they talk about the trials and tribulations of life and how afraid they are, I am quiet. I have a secret. They don't know what I know and what you will know when you are done with this. Like Clark Kent, we know that people may think we are like everyone else, but in reality, we can leap tall buildings in a single bound, decipher a pathology report as if it is our native tongue, and we can face just about anything.

If I remember that first meeting with my breast surgeon correctly, I am not supposed to be here right now. Well, he did give me negative percentage points. I didn't know that I would be blessed to fall into the positive few percentage points he also mentioned. I have been lucky, God has been good to me. I have lost many friends who I miss every day. But for some reason I am here. When you hear your "chances" and are given stats and percentage points, remember that you, too, can be on the positive side of those points too.

Twenty thousand people could have died in the World Trade Center, but because of the hard work of the heroes that came to their aid, they escaped. The windows and doors of the lobbies were shattered so everyone could get out. We lost three thousand, but tens of thousands made it out alive. Too many people die of cancer and it is infuriating and heart breaking. But millions also survive. And they are living wonderful lives- wiser, stronger, grateful lives.

Always look forward. Do what they ask of you. Never, ever give up hope. And above all, No Surrender.

Tuesday, September 2, 2008

LET'S BE HEARD!

ASCO- the American Society of Clinical Oncology- is taking on the federal government to call for more funding for this disease.

Add your voice- sign the petition- get your friends and family to sign it-
Remember: The CURE for our disease is not in a pink ribbon- it is in a test tube in a lab somewhere in an underfunded research laboratory.


Federal Research Funding



USA Today ADIncrease Federal Research Funding. Make Your Voice Heard.


The fight against cancer needs your help.

Almost 1.5 million Americans will be diagnosed with cancer this year, and 1 American dies of the disease every minute.

But instead of increasing funding to find new and better cures, our nation’s commitment to funding cancer research is waning. In fact, adjusted for inflation, we have about $500 million less for cancer research than we did just five years ago.

Take Action Now. Sign ASCO's petition to support increased funding for the National Institutes of Health and the National Cancer Institute.

ASCO Ad in USA Today, June 2, 2008


Background:

The nation’s investment in cancer research is paying off. Cancer deaths are decreasing, survival rates are increasing and treatments are becoming more targeted and with fewer side-effects.

But the United States is in the midst of the longest sustained period of flat funding for cancer research. The budgets for the National Institutes of Health (NIH) and the National Cancer Institute (NCI) have been flat for 5 years. Adjusted for inflation (using the Biomedical Research and Development Price Index), the NIH budget has fallen 13 percent since 2003, and the NCI budget has fallen 12 percent since 2004.


Decline in NIH Purchasing Power: 1995-2007
Decline in NIH Funding
Source: Association of American Medical Colleges


After years of progress, funding for NIH and NCI leveled off and actually decreased in recent years. From 1998 to 2003, funding for NCI increased by 80 percent, allowing for major advances in cancer research . Since that period of rapid growth, NCI’s budget has grown by an average of less than 1 percent annually. In FY 2006, NCI experienced a cut of almost 1 percent.


Annual Increase of NIH and NCI Appropriations 1998-2008
NIH and NCI Appropriations 1998-2008
Source: ASCO


These declines in the value of NIH and NCI funding threaten to erode the extraordinary recent progress made in biomedical research over the past decade, at a time when scientific potential has never been greater.

ASCO Position:

ASCO and others in the biomedical research community are calling for Congress to increase funding for NIH by $1.9 billion, or 6.6 percent, in FY 2009, to keep pace with medical research inflation, to reverse the effects of flat funding and to sustain momentum in biomedical research. ASCO respects the professional judgment of the NCI in requesting a total of $5.26 billion (a $455 million increase over FY 2008 funding levels). ASCO will work to ensure that Congress approves the largest possible total funding increase to support NIH and cancer research. ASCO is also calling for funding increases over the next several years that at least keep pace with inflation to ensure that progress in cancer research continues.