Thursday, September 27, 2007

Vicky, This One is For You

There is a wonderful sisterhood of women who have been touched by breast cancer in cyberspace. Discussion forums are how they meet and deep bonds are made. Friendships are formed that are somehow closer than our face-to-face friends.

I have been a visitor of discussion boards since I was first diagnosed. The women I met along the way have helped me survive more than any drug my oncologist could prescribe. The first board I belonged to was a wonderful place. I was taken under the wing by breast cancer veterans who showed me the ropes. They also taught me how to help other women who were just starting their journeys.

The brutal reality of breast cancer hits the sisterhood hard when we lose one of our sisters to the beast. I stopped counting how many we have lost. But each one touches us deeply and a ripple effect of fear and sadness spreads across the miles through every modem and out of all of our hearts.

There have been some very popular girls who were in their last days and they had a big circle of friends who were able to keep us up to date with each new detail and it is so heartbreaking to read about what was happening to both our sister who is struggling and the also pain the friend is enduring being the messenger of such sad news updates.

Sometimes, collections are taken up and flowers are sent from all over and "we" the cyber sisters, show our respect and grief.

There was a girl named Carla who I was very close to in posting and email. Carla was not a "joiner" so to speak. She was always there with an encouraging word or offering a prayer, but she was a more private person and didn't share a lot online. When Carla died, all the sisters expressed their sorrow, but it didn't go beyond that because no one really knew her that well. Except for me and Vicky. Vicky and Carla and I were all diagnosed around the same time. We flew just under the radar in cyberspace. We never had the opportunity to meet the other girls at gatherings so we were a bit on the outside. I remember when Carla died, Vicky emailed me and was upset that there wasn't more being done to honor her memory. I agreed. There were no big arrangements of flowers sent by the group. And she died in close proximity to another sister who was extremely popular and there had been quite a large expression of love sent to her family by the girls who were members of that breast cancer board.

So Vicky and I got together all of Carla's old posts and I sent them to her father. He read some at her memorial service and he was very touched to learn how many lives his daughter had touched.

Vicky said to me, "If I die, make sure I am not forgotten like they forgot about Carla."

That was three years ago.

I found out a couple of days ago that Vicky died. The breast cancer board that we had been a part of had broken up and its members are now scattered to the winds.

So I can't gather them all together for you Vicky.

But I want to honor you here. A lot of people read this blog and site.

Vicky was a NY Met fan. But was forced to become a Yankee fan because she was outnumbered in her house. Her two boys were diehard Yankee fans and so she, begrudgingly, became one too. But I can tell you now that she secretly joined me in rooting for the Mets.

Vicky worked at West Point and was honored by that institution before she had to step down because her disease was getting hard to handle while working full time.

Vicky would brave the coldest and hottest weather to be in the stands when her boys played sports. Even when she was at her sickest, she always was there to cheer them on.

Vicky always had a loving word, a prayer and a big pair of shoulders to lean on if you ever needed a friend.

Vicky was too young. Too young to be taken from this earth. Too young to be taken from her boys. Too young to have endured all she did for so long.

Vicky was my friend. She was my sister. She was gracious and loving and full of compassion. I will miss my friend.

I will never forget you Vicky.

May you rest in peace.

Sunday, September 23, 2007

REAL BREAST CANCER AWARENESS

As the pink cloud of orgiastic media frenzy of breast cancer awareness descends upon us I would like to take a moment to be aware...

This week our BC sister Shelli died.
I found out my friend who I was diagnosed with named Vicky died.
Jayne, the tripleneg girl who was so scared of her new diagnosis died.

That was just this week.

When asked to contribute to the cause or the cure or awareness, remember those girls and all the other warrior angels that went before us.

Check to see where the money is going to.
Check to see how much goes to the actual breast cancer "charity"
Check to see if it is a real charity.
Check to see if it is really "research"
Check to see if you are contributing to an awareness campaign... because those of us who ARE aware know that OUR CURE IS IN A RESEARCH LAB.
It isn't in a pink vacuum. It isn't in a lipstick or a container of yogurt.

Go to the NIH and look up their designated breast cancer research labs.
Two very good ones are Fred Hutchinson and the Cold Spring Harbor lab.
THEN decide. Do you need a pink spatula? Or can you keep your old one and send the money it would cost to buy the pink spatula directly to the lab of your choice? No middle man. No percentage points. The whole amount.

I am mad today.

We are losing friends. I want to hit the beast where it hurts. In the test tube. Because we ain't gonna touch him with a Lean Cuisine.

Sunday, September 16, 2007

Website

There is now finally a website that will connect all three No Surrender Sites together.
It can be found at nosurrenderbreastcancerhelp.com
This is very exciting because it is a way to connect with the newly diagnosed, fellow sisters in treatment, and friends who are living with breast cancer.

More will be added to help the newly diagnosed navigate the choppy waters that lay ahead of them. And the latest in research will be added to help those of us who cope with the disease every day.

There is always a wealth of information that can be found by the live interaction that is shared by the Sisterhood on the message forum.

Thank you for being patient with me while I set this up. And thank you for all your encouragement to give me the push I needed to finally go ahead and do it.

To everyone who writes to me here or in email or on the message boards, I don't know what I would do without you. You Rock.

Love,
g

Sunday, September 9, 2007

Creative Process

This has been a very interesting few days. As many of you know, I am not computer literate and can be legally considered Technically Challenged. (Evidenced by the fact I can never seem to get a link activated in this blog!)

However, desperate times call for desperate measures and a little Rainman lives in all of us.

I spend a good part of my day, every day, at breastcancer.org. There is a fantastic group of women there and they have become my family. But BCO needed to upgrade its software... and not in a little way. They went for it. They built it from the ground up with their own servers ( still not sure what a server is because I used to be a caterer and every time I hear that expression I imagine one of my caterwaiters passing a canape on a silver tray.) Whatever they are, canape or no, BCO got themselves some new ones.

Unfortunately all hell broke loose over there because no one could sign in, navigate the boards, find their old passwords, log in names had disappeared and women's real names were appearing and in short- it was a disaster. I have never felt more sorry for a group of people in my life. The members AND the staff were both suffering.

So I googled discussion forums.

Next thing I know I am creating one. It was kind of fun.

It asked me if I was ready to launch. Good God. WAS I READY TO LAUNCH???
You know? What they hell. I hit "Yes."

And the new forum was born.

I told two friends and they told two friends and so on and so on and next thing I know I have over 12,000 hits and 50 members. AND THEY LIKE IT! I feel like I an hosting a really great party with absolutely no clean up involved.

It is a place for the BCO girls to come to while things get back to normal at our old home... but it is also a place that new women are joining that have nothing to do with BCO. THAT is very exciting to me.

I am still posting over at the old homestead when I can get in to post. And I plan on staying there like I always was. But I have to admit, this new spot I created is growing on me... and I am truly enjoying the creative process of making a home from scratch.

It you care to stop by this is the address: Message Boards

We're havin a party!

Friday, September 7, 2007

Message Board - click here

There is now a message board to post to so we can have interactive conversations!
Please join in!!

Normally we would meet at breastcancerorg, but things are a little screwy over there right now. So until things get back to normal this spot was created.

http://www.websitetoolbox.com/mb/nosurrenderbreastcancer



Cut and paste this link or click on the title of this post.

BCO members- this should hold us over until the boards are normal again!

Love,
g

Thursday, September 6, 2007

Six Years

Six years ago today, my breast surgeon turned to me and said, "Let me tell you about your cancer," and it all began.

I was told I had the "bad" cancer, the triple negative kind that has no drugs to counteract its attempts to recur after my treatments ended. I was also informed I had the most aggressive type and that it was close to the chest wall. I was not given a lot of hope. In fact, I was scared to death... of death.

But I fought. I learned how a few days after my diagnosis when I was in Manhattan the morning of September 11th, 2001. I went from frightened and helpless to warrior. I saw that I was given the chance to fight and the people who were in those buildings, smoldering before me, did not.

I was told that chemo works better on triple negative disease, and so I agreed to go through it. I had many surgeries and radiation, too.

Then the waiting began. With cancer, if you can make it past your first two years without a recurrence, then the tumor is most likely completely gone. Doctors don't really feel at ease though until you reach your third year. Then, if you are triple negative, if your cancer has not returned, your chances of it ever returning sharply decline.

With each succeeding year of being disease free, a triple negative cancer is less likely to return.

I was the most frightened reaching my five year mark, probably because there is so much emphasis put on it with the way statistics are measured.

My five year came and went, but there was a problem, like a distant bell ringing in my heart. I knew there was something wrong, I just couldn't seem to get my breast surgeon to listen to me....

My triple negative cancer did not return. But I did get a new primary of lobular, estrogen/progesterone positive cancer. A new cancer in the other breast is not metastatic disease, it is treated as aggressively as any newly diagnosed breast cancer. And I am being treated as aggressively as humanly possible because we are shooting for nothing less than a cure.

I will always reflect on this day as the day that changed my life profoundly. I am smarter and I am stronger and I am victorious.

I am also happy.

I thought my first go around made me appreciate life more - well this time I am truly in awe of all that surrounds me and I am making the most of every single moment on this earth.

And oh I love the life within me
I feel a part of everything I see
And oh I love the life around me
A part of everything is here in me

I may be in chemo again this cancerversary, but I feel more at peace and more grateful and more full of life than I have in six years and one day.

Thank you, all my sisters, for bringing me through the dark times, for laughing with me at the absurd times, for crying with me both tears of joy and heartbreak, and for the love you have shown me.

And, if there are any newbies reading this: You can do this. You can get through every step you are being asked to take, every treatment you must endure, every victory small and large. There are women around you ready to take your hand and show you the way. You have entered a sisterhood stronger than anything you could ever imagine and you are, above all, not alone.

To six years!
I made a promise I swore I'd always remember, no retreat, baby, no surrender.

Monday, September 3, 2007

Because of cancer

I have received a few requests to repost something I wrote on BreastCancerorg. It was in a thread asking "What Has the Pink Done for You: Good," meaning what good has come out of your breast cancer experience. So, by popular request, here it is girls:


I don't know if any of you have ever noticed this about me but I am sometimes opinionated.

I once wrote a piece for a publication that was entitled
"If someone offers you a pink ribbon strangle them with it."

The editor thought it was a tad negative. Perhaps I had best not offend the hundreds of thousands of women who run, walk, race and live and die every day with a pink ribbon proudly pinned to their chests. She was right. I was in a bad place and saw nothing pretty or pink about cancer at the time. There I was, NED*, three years out with more side effects from my treatment than I care to think about. I was trying to get people's attention to raise money towards research in the piece, but the title hinted at my untapped anger I had at BC in general.

Three years later here I am back in chemo again. I have no hair or eyelashes. My body is screaming from the Abraxane. I have a newly inserted tissue expander that replaced my ruptured one that has to be squeezed, smashed and smooshed and drained with an alarmingly large needle every single day because there is so much fluid around it my "breast" gets to be the size of a football. I missed chemo this week because of it and that means that I will be done in November now instead of October. I have Lymphedema in both arms and I am, in a word, a chocolate mess.

CANCER CHANGED MY LIFE.

For the better.

Yes. You read that right.

I got a new primary the second time around. I could have been diagnosed with mets. With my node involvement I may face that diagnosis someday. We are all an MRI or PET/CT away from hearing that news. Am I going to wait for it?

No way.

I AM ALIVE.

I have met the best friends I ever had in my life since I have had cancer. I have seen the best in people and the worst in people. And what's more, I have seen the best in me.

Because of cancer I found that inner warrior inside - that we ALL have - who only reveals herself when we really, truly need her and when we least expect it.

Because of cancer I am smarter. I can speak Doctor fluently now.

Because of cancer I know better.

Because of cancer I can spot BS in under 45 seconds.

Because of cancer the air smells sweeter, the sun shines brighter, and I have become a part of all the beauty that surrounds me.

Because of cancer I know I can handle just about anything.

Because of cancer I have been touched by women all over the world and I know them and they know me and we are sisters.

Because of cancer I have been given the gift of being able to actually make a difference in someone else's life.

My life may be shortened, but it will be lived better than a lot of people I know who have never had cancer.

It also made me mad as hell.

But am I going to let the Beast win?
And make the Beast’s day? Are you kidding??

I refuse to let cancer take over.
I HATE that song "Live Like You Are Dying"
This is what the Beast hopes for. It is what it likes to do even more than kill us- it likes to rob us of our hope and spirit.

I have lost friends to this Beast-I have seen them die.
It is horrible and scary and sad and infuriating.

I didn't survive cancer surgeries and treatments to live like I was dying! I am going to LIVE LIKE I AM LIVING!

If I get down about side effects or long term disabilities from cancer, or life changes that happened because of cancer, I will be damned if I am going to give the Beast credit.

I am going to give it hell instead!

The Beast did not take away my life.
The Beast did not take away my spirit.
The Beast did not take away my heart.
The Beast got some tissue, a few cells and some DNA. I reciprocated. I removed the rest of the tissue. I killed the cells the Beast was living in. I stopped the DNA from duplicating so it would die. I gave the Beast radiation, adriamycin, cytoxan, methotrexate, 5-fu, and abraxane. Someone should have told the Beast not to bring a knife to a gun fight. I don't play fair because either does the Beast.

I don't permit myself to circle the negativity drain. Life is too short to waste one precious moment dwelling on all that could have been and would have been if I never had cancer... I have the here and now. I know what I have to do to be NED again and I am doing it. It is practically killing me- but I refuse to give the Beast an inch. And I will let my Plastic Surgeon squeeze the ever livin hell out of my breast until heals and looks right again, because when I dance with NED I want to look hot.

You won't find me ringing the dinner bell for the Beast.

Get up, look up and never give up.




* NED stands for No Evidence of Disease, technically. But to breast cancer survivors it is a HE and he is our knight in shining armor and we all want to dance with him forever