Thursday, January 29, 2009

The Magical, Magnificent Deb

I wanted to wait until the initial shock and pain wore off before I wrote about Deb because I know she would want it that way. She would want something written that reflected her tremendous capacity for joy, hope and love.

Deb Clonan, “Alaska Deb” touched the lives of everyone she came into contact with - be it from her home town or across the globe. I am not from her home town, but I knew Deb. She was my sister. Not by birth or blood, but through a disease we shared with thousands of other sisters who gather together online to share the journey we didn’t ask to take, called breast cancer.

Deb and I have been friends since the first post she made expressing her fear about her particular type of breast cancer that was not as common as the kind most women get, and it has a bad reputation for being more aggressive and harder to beat. I also had that type of breast cancer, but I was a few years out of my diagnosis and this helped her find hope, knowing that women can survive it. Sadly, it did not turn out that way for her. But Deb would be the first to tell you that she lived - really lived - every moment she had on this earth.

Along with our diagnosis, we shared a love of writing and reading and in particular a play. I once posted a line from this play when there were some upsetting things happening on our support forum, and Deb said that it gave her chills because it was her favorite line of any play. If ever there was a time for me to share it with you, it is now. Deb is no longer on this earth, but she is with us. Around us. And she saw that life was so very precious while we have our time here. So many times she would step in as the peacemaker when squabbles would break out, because she wanted everyone to stop wasting time and appreciate life right now - because that may be all we have.

In Thornton Wilder’s Our Town, the character Emily dies. She begs the Stage Manager to come back to earth for one day - just one day. He advises her that it wouldn’t be a good idea, but she insists and he relents.

It is painful for her to watch her family walk by each other without truly seeing each other. Her parents and brother talk but don’t listen. She sees that the living are going through this life without really living it, experiencing it, rejoicing in the split second of time that is alotted to us all. Finally she begs to be brought back to her grave, because she cannot watch it anymore. In tears and anguish she turns to the Stage Manager and says, "It goes so fast. We don't have time to look at one another! Do any human beings ever realize life while they live it, every minute?"

The Stage Manager replies,” No. The saints and poets, maybe.”

Deb was one of those poets who realized it. That is why it was her favorite quote.

When I had a new cancer diagnosis, Deb was not going to let me despair. In fact, she rallied everyone to my side. She and her beautiful daughters made buttons that said “No Surrender” on them, and she sent them to everyone in our circle. Many of the women who received a button wore it on their purse or jacket when I was starting treatment or going through one of many surgeries. She helped me through a very difficult time. That was Deb. She was there when you needed her. And she even let you know she cared when things were going just fine, too. When I started my own support board and website, she wrote me words of encouragement and gave me wonderful suggestions to make it the best it could be. She wanted it to succeed and she was a big part of its success.

When Deb found out that her cancer had spread there was an outpouring of support for her. NOT DEB! We were frantic. But it was Deb who let us know it would be OK, no matter what happened. Deb had a deep and abiding faith that guided her and sustained her. She gave us faith and courage through her own faith and courage.

She did not have an easy time of it. She had problems with her port that delivered her medication to her spine that caused terrible side effects. The worst of all was the inability to communicate. For someone as verbal and communicative as Deb, I think that was probably worse than the cancer for her. For Deb to not be able to speak or write was the cruelest thing cancer could do.

Deb was blessed to have a husband who took care of her completely and lovingly. I have spoken to John often and I didn’t know there were men like him around anymore. I thought they discontinued that model. Fortunately for Deb, they didn’t. For he was a gift to Deb and I am forever in debt to him for helping the dearest of souls through the horrors of this disease.

John and I had a good, long talk today. He has given me permission to share with you her last days. He told me he didn’t know what to post to us because he didn’t want anyone to lose hope or be discouraged because Deb passed away. Because, he said, Deb would never want anyone to lose hope or become discouraged. She would want everyone to keep fighting and keep living - every minute.

Her last days were blissfully without any pain. She didn’t even require Tylenol. Her bed was set in the living room in the middle of all the action. On Saturday, the night before she died, she was sitting up in bed laughing watching her girls play with their wii. Sunday morning came and the cold Alaska landscape was shimmering with sunlight. It was a beautiful day. The girls went to church early and John left a little later. When he returned he kissed Deb’s forehead and said “Hi, I’m back.” Her parents and cousin were there with her as well as her best friend. After a while her friend called him over to her bedside and the time was growing near. He held her hand and talked to her and kissed her. Deb was in no pain, bathed in sunlight, with her family around her when she took her last breath.

And at the very moment she passed her dogs went absolutely nuts. They were barking like mad and began deliberately running to the South-South West field all the while they were looking up at the sky, clearly following something. John and the family watched them because they knew they were watching Deb break free of the chains of cancer and she was free to be outside and flying high to her loving God who awaited her. When John looked back at the bed, he saw that the body there was not Deb, what was there was just the body that housed her. Deb’s spirit could not be contained, she soared free. And she is with her family and with all of us. And she is Deb again. Cancer can never touch her ever again. Deb is free.

Last summer Deb sent me a book by one of her very favorite authors.... someone she called a “local author.” The note said, “This is my favorite author, I really hope you love this book as much as I do.” It was about a little town in Alaska and it is called, “If You Lived Here I Would Know Your Name.” I smiled. I shook my head in wonder. I had to tell Deb.

“Deb, you know that book you sent me? About your town? If You Lived Here I Would Know Your Name? The author and I went to school together here - on Long Island. She grew up right here where I live.

And this, of course, was answered with Deb’s contagious laugh. She loved it. She thought that was the most amazing coincidence ever.

It was just another magical Deb moment. I believe with Deb there are no such things as coincidences. She was magic.

And now that she has left us in body, the world is seeing that everyone knows Deb’s name. Why? Because she realized life while she lived it- every minute.

I know you are around us all, Deb. I will miss talking with you, but I know I will feel your nudges.... and I know I will find myself smiling for no reason and it will be because of you. I also know when I get scared or down or feel sorry for myself you will find a way to snap me out of it.

I would like to make a request- for those of us who cannot be in Alaska for her funeral celebration which will take place on Saturday at 2PM, let’s each of us get a balloon and write our name and Deb’s name on it, stand facing South- South West, and send it up to her. Deb would love that.

And to you, Deb, I thank God you were my friend. I will love you forever and will never forget you. The kids are doing OK. You did a good job with them. And John is honoring you every moment.

Until we meet again,

Gina, “No Surrender”
No Surrender Breast Cancer Foundation
(Yes, Deb, I am putting it in the signature, like you always told me I should do!)

Tuesday, January 6, 2009


Is it just me? Or does 2009 look like the year we get closer to ending this blasted disease??

Gene that makes breast cancer spread is found

Discovery gives researchers a ‘real shot’ at making drug to stop metastasis

CHICAGO - A single gene appears to play a crucial role in deadly breast cancers, increasing the chances the cancer will spread and making it resistant to chemotherapy, U.S. researchers said on Monday.

They found people with aggressive breast cancers have abnormal genetic alterations in a gene called MTDH, and drugs that block the gene could keep local tumors from metastasizing or spreading, increasing a woman's chances for survival.

"Not only has a new metastasis gene been identified, but this also is one of a few such genes for which the exact mode of action has been elucidated," said Dr. Michael Reiss of The Cancer Institute of New Jersey in New Brunswick, whose study appears in the journal Cancer Cell.

"That gives us a real shot at developing a drug that will inhibit metastasis," he said in a statement.

Stopping cancer's spread is important — while more than 98 percent of patients with breast cancer that has not spread live five years or more, only 27 percent of patients whose cancer has spread to other organs survive.

Reiss and Yibin Kang of Princeton University used several different research approaches to find the gene, which helps tumor cells stick to blood vessels in distant organs.

To get them in the right general area, they used big computer databases of breast tumors and found that a small segment of human chromosome 8 was repeated many times in people with aggressive breast tumors.

While most normal DNA sequences contain only two copies of a gene, they found some breast tumors had as many as eight copies of this gene segment.
The team then turned to human breast tumor samples taken from 250 patients to look for these genetic abnormalities and found the gene MTDH was overly active or expressed in aggressive tumors.
"This gene exists in every one of our cells," Kang said in a telephone interview. "Somehow the tumor gains extra copies and overexpresses them.

"We saw 30 to 40 percent of them overexpressed this gene."

‘One stone hits two birds’
The researchers then injected lab mice with tumor cells from patients who had this genetic alteration and found the mice formed tumors that were more likely to spread. They also were more likely to resist treatment with traditional chemotherapy drugs, such as paclitaxel.

But when they genetically altered these tumors, inhibiting the MTDH gene, the tumor cells were less able to spread and were more vulnerable to chemotherapy.

Kang said he is hopeful the finding will lead to drugs that not only keep breast cancer from spreading, but also make it more responsive to treatment.
"If we have a drug to inhibit this type of gene, one stone hits two birds," Kang said. He said MTDH may also play a role in other types of cancers, including prostate cancer. "It's likely to be a broad influence gene," he said.
Kang said he thinks it would be possible to develop an antibody to neutralize the activity of the gene.

Already, it has gained the attention of drugmakers. Kang said he plans to meet with Johnson & Johnson next week.

"I'm quite optimistic we will try to develop a drug as quickly as possible," he said.

Monday, January 5, 2009

Please God, LET THIS WORK!

LITTLE ROCK, Ark. — Scientists at the University of Arkansas for Medical Sciences hope to begin clinical trials this spring on a vaccine to prevent the recurrence of breast cancer.

If successful, the vaccine would not replace traditional treatment such as chemotherapy and radiation but could be an additional treatment for patients, said Laura Hutchins, the principal investigator, professor of internal medicine, and director of the division of hematology and oncology.

Thomas Kieber-Emmons, director of basic breast cancer research at the UAMS Winthrop P. Rockefeller Cancer Institute, said the vaccine was developed over a decade of study on the immune system. He said the key was understanding how different molecules work together to combat disease.

Breast cancer cells are covered with molecules, called antigens, that are capable of triggering the production of antibodies that fight breast cancer cells. But the carbohydrate antigens on cancer cells don't stimulate a strong immune system response.

Kieber-Emmons and his team came up with an alternative approach with a six-year, $2.9 million grant from the U.S. Department of Defense. They developed peptide antigens that mimic the carbohydrates.

A peptide is a compound consisting of two or more amino acids. The peptide-based vaccine tricks the body into producing antibodies that target both the peptides in the vaccine and the carbohydrates they resemble on the breast cancer cells.

The trials will be done in phases. The first phase will last four to six months, and involve women with cancer that is actively spreading and women whose cancer has come back after going into remission. The women will receive five doses of the vaccine.

The second phase will last about a year and include women who have had breast cancer but are in remission and considered at high risk of getting it again. The women will have to have been off chemotherapy for at least six months.

The number of patients participating in the study hasn't been determined.

Saturday, January 3, 2009

Kay Galipeau

It is with great sadness and a heavy heart that I report the loss of our friend, Kay Galipeau, known as "Fancy" on the message forum.

Fancy was the name of her favorite horse. She was an accomplished horsewoman and well loved around the country by all who knew her.

Kay had first fought cancer in 1995 and had a new primary over ten years later. She developed mets last year and was winning the fight against them. However, the chemo was too rough on her liver and kidneys and her treatment had to be stopped.

Kay was surrounded by her dear friend and her daughter when she passed from this world into the next to join her beloved husband, Joseph, whom she lost last year.

Kay was a wonderful friend and was always willing to reach out and help any newly diagnosed woman. She had a wealth of information about alternative and CAM treatments and taught us so much. She also had a quick wit and a sassy sense of humor that often left us smiling long after we spoke to her.

This is the advice Kay gave to a newly diagnosed woman who had found out her cancer had spread...

"I finally decided that the Man Upstairs was driving the boat, and although NONE of this stuff made any sense to me, HE must have a plan. So I asked for the strength to handle whatever came to me and the grace to accept it. That seemed to help a lot.

Worrying won't help. Worry doesn't kill cancer, it HELPS it because the worry does a number on your immune system. Look around. See and hear and smell and taste the beauty that the Creator has put here for us. Love your friends. Forgive your enemies. Focus on today. If you get smacked flat by a truck tomorrow, all this won't matter anyway.

So, that's how I handled bc in '95, '05, and my husband's illness in '06-'07. I just let the Big Guy handle it. Does this work 100%? Um, truthfully, not. But it's the best I can do for myself. Hope it works a little for you, too."

That is how she went through life. We are richer for knowing her.

God Bless you, Kay.
We will miss you very much, but you will never be forgotten.