Tuesday, August 7, 2007


Something rather magical happened this weekend. There is a forum on breast cancer org that was started almost a year ago to help women who were getting bad news piled on more bad news. It is called Time to Circle the Wagons Girls. You may have heard me refer to this blog as a Wagon Circle Outpost.

When one beloved member posted that her cancer had come back "worse than ever" and that the oncologist gave her only two months there was fear on the site. We had dealt with many other sisters who had received a mets diagnosis, but not like this. After this woman posted, three others also received horrible news. The women wanted to talk about how scared they were for their friends and for themselves, because we all know we are just an MRI away from that same diagnosis. But they also wanted to find a way to encompass and shelter these sisters and help them through the storm they were in.

It became a wonderful, loving place. We had so many hits that BCO gave us our own forum. And the circle grew and grew. Finally mets girls felt they could post about themselves and know they wouldn't be scaring anyone - why? Because we were created for them. Girls who had scary tests started to come. Wives whose husbands were mistreating them in the worst way because they had cancer could come and find shelter. And the best part was, it was also fun. There is laughter that emanates from those covered wagons. It is a cyber world that seems so real you could almost smell the cowboy coffee cooking in the morning.

This past weekend the cyber world became real. One of the Circle Girls opened her house up for a "Real Wagon Gathering." Girls came from as far as Alaska to this upstate New York slice of heaven. Faces and voices could be matched with the words we had shared over the past year, through the hardest of times and the most joyous of times.

I could not attend because of my treatment schedule. This saddened me more than I can express. On Saturday night my phone rang. I picked it up and heard laughter and shouting and music. The Circle Girls were calling me. One after one they got on the phone and we said hello and talked about just how wonderful this little internet thread had become. And then I heard singing. It got louder. I was told that the cell phone was being held up and I was part of the circle they created around the fire. They asked me to sing along with them and I could feel myself dancing around the fire with my sisters, a real part of this amazing group of women. It will always be a moment in time I will never forget.

We have been asked to deal with a lot when we are diagnosed with cancer. And those first few days and weeks can be a very dark and lonely place. But if you are very lucky, a sister will reach out to you. Someone who has been through what you are about to face will hug you and tell you that you may be in the worst place in your life, but you are with the best of people you will ever know.

Friends come and go. Sisters don't. I have had vapid friendships with people since my diagnosis who just don't get it. The kind of people who complain to you about the way their colorist did their hair when you are standing there in a wig because you are bald. The kind of people who diminish what you are enduring by making the most inane problems in their lives life or death when you are literally fighting for your life with chemicals and surgeries. These "friends" come and go. And it is ok. Because we have our sisters. We have women who know with just a look what we are thinking. Who know how scared we are. Who understand what is important. Women who are part of our hearts and always will be.

When you are a member of an internet support group words are written and you believe them, but not until something happens do you really see what your true friends are made of. The cancer survivors who share this blog with me have become a very important part of my life. It is because of what we have experienced and the way we know instinctively how to reach out to one another. I have found that the bond I have made with other women who have faced down the beast is as deep as any blood relation, in fact, it is deeper. This weekend, even though it was only over the phone, I felt the love of the women who have become my family over wires and fiber optics many a late night and days when I should be working and not checking who is online.

No friendship with a "civilian" could ever match what breast cancer survivors feel between each other.

The woman who had her cancer come back worse than ever with only two months to live? She is NED now. That means No Evidence of Disease - which means she is doing fine. Of course, if you are a survivor you knew that already.

From two months to live to no evidence of disease.
I told you.
Something magical is happening.


Anonymous said...

Gina dear....you were RIGHT THERE singing with us. We felt your heart and hope you felt ours. I still can't think about last weekend without a tear and then a laugh! I get home to AK where it is NOT 90 degrees (thank you LORD) on Thursday. I have tons of notes and want to write about my experience...but not yet...the really good things have to simmer awhile before they are ready to put on the page.

Hugs from the heart...
Oh and the cookies were great :) I think I ate more than my share....shhhhh...don't tell LOL
Deb C

Jacqniel said...

Gina, I have visited (mostly lurked)the circle off and on and even toyed with the idea of going last weekend. Seeing the pictures they posted made me wish I had attended. You are so eloquent in your writing. Hugs, Jacque

Gina Maisano said...

Oh Deb how I wish I could have met you for real!
Jacque, I would have loved it if we both could have gone and we could have met!

The girls have been posting photographs- I put some of them together:

Jenster said...

Blessings to all of you! (And Deb - I'm jealous of your cooler weather!)

Stephanie said...

Thank you so much for thinking of me both with my Dad's illness and with my fight of breast cancer. You're a special advocate for us triple negatives. Thank you for all you do. I'm so honored that you nominated me. God is able, Stephanie

danahollis said...

Oh my gosh... your post brought me to tears.

It is amazing isn't it... that women who don't even know each other in real life can be bonded so deeply by a shared experience? It truly does help to make this horrible disease more bearable!

We are truly lucky in so many ways.


danahollis said...

Oh my gosh... that little photo montage was beautiful... those skirts... too cute! ;)

More tears... :)

Anonymous said...

G--I have shivers after reading this blog. It's true that "civilians" will just never understand how our lives have been changed by this journey and by the ladies we've met on the bc forums. Thank you for all your thoughtful words. NancyLee

Gina Maisano said...
This comment has been removed by the author.
Gina Maisano said...

testing- this seems to be out of whack today!

Anonymous said...

I have just always lurked on your blog. You are an inspiration. This latest post brought me goosebumps and tears. You are so incredible and your writing and shared experiences mean more to me than you can know. Thank you.

Cheryl Jones said...

My heart is breaking. I go in for surgery on August 28th. I have triple negative invasive ductal breast cancer. I have not read one good thing about the prognosis of it. I am a mother, wife, grandma and I have wonderful friends, but none that can truly understand my feelings. I am not sleeping at all. I am sitting here wishing I knew someone to call and to be my friend. I am just 51 years old. I love my family so much. I am trying to cling to hope. Please if anyone wants to give me their phone number, I really really need to talk. I don't have a blog but my daughter does. You can see my beautiful grandchildren. She posted a post about me about a week ago. My phone number is 419-884-3675 and my email is cherlilly12@yahoo.com
I pray someone sees this today (Saturday)

Cheryl Jones said...

Oh, here is my daughters blog and you will see my little grandaughter just adopted from Guatemala and my grandson who just started preschool and then the 2 posts down is one my daughter wrote about me. It is so hard for her and makes me hurt for her. Does anyone know of a good support group. I am falling apart but no one would know it!!!!! I look so strong to everyone else. I don't want to bother people with this.

Gina Maisano said...

I posted to you on the main page.
I just wanted to wish you luck on your upcoming surgery and to let you know that it is not all bad news. REALLY!
I am a six year tripleneg survivor.

You asked for a good support group,
breastcancer.org is the best website around.

There is a newly diagnosed forum, a surgery forum and a TRIPLENEG forum too!

I am there as nosurrender.

There are hundreds of fabulous, caring, loving sisters there who have all walked the same path you are on. Check it out- you will be glad you did!