Tuesday, February 10, 2009

Deb's web — Fellow cancer patients demonstrate how Sterling woman touched lives




By Jenny Neyman
Redoubt Reporter

John Clonan knew how special his wife, Debbie, was to him, their daughters, and their family and friends. He knew her social network was extensive, because to Debbie, a stranger was simply a new friend she hadn’t met yet.

He even knew she was considered an inspiration to many in the way she battled breast cancer and helped others fight the disease. But when she died Jan. 25, at their home in Sterling, he didn’t grasp just how far his wife’s sphere of influence, love and support reached.

At her memorial service Jan. 31 in Soldotna, it became abundantly, sweetly clear — represented by a mass of about 200 pink roses sent by women across the world.

Each flower represented how Deb touched someone’s life.

One from Glenview, Ill.: “I always admired Deb’s spirit, and her humor. She will be so missed, and my heart goes out to her wonderful husband and her much loved girls. She was a truly beautiful person, and touched so many lives that her memory will always live on.”

Another came from Saratoga, N.Y.: “She was such a marvelous woman. Her spirit will live forever with those of us who knew her. My heart breaks for her family. She was one in a million. She raised all of us up with her words of encouragement and hope.”

And from Minnesota: “She was always so full of optimism and cheer. So ready to lend a helping hand to those in need of one. I imagine there is a great party going on up in heaven right now. You’ll be missed, Deb.”

Most were from people Debbie had never even met, yet through the Internet, she was able to touch their lives.

She was active in online breast cancer support groups throughout her battle with the disease — from her diagnosis in 2005, treatment in 2006, remission and the cancer’s resurgence in 2007.

The sites, www.breastcancer.org and www.nosurrenderbreastcancerhelp.org, offer a wealth of information for anyone affected by breast cancer. It’s a place where people can get answers and find information about anything and everything, from new treatment research and drug side effects to tips on drawing in eyebrows after chemotherapy or how to answer whatever uncomfortable questions people may ask.

It’s also a place for people affected by the disease to talk to each other — to share information, fears, humor, anger, support and hope.

It’s that last one that Debbie specialized in.

“You can deal with the reality of it, but she never gave up,” Clonan said. “She never gave up and she never wanted anyone else to give up. She was a resource for a lot of people.”

Her strength, unflagging support and upbeat attitude were well-known on the central peninsula, said Kathy Lopeman, an oncology nurse at Central Peninsula Hospital. Debbie and her team, the Sensational Sterling Superstars, were the top fundraisers for the Relay for Life program, and she was a constant advocate of early cancer screening. Around the hospital’s oncology department, she was also a constant advocate for anyone who needed a boost.

“She always had a good word for everyone else — an encouraging word for all the other patients, a good joke to share with them or something upbeat to go with them,” Lopeman said. “She shared some tears, too, but she didn’t share them with the other patients going through the same thing as her.

“She will always be remembered through her sense of humor and her positive attitude. She was a fighter. She was tough.”

But she needed support at times, too, and she found a lot of it in the online support groups. Clonan said he didn’t always understand why Debbie spent as much time as she did posting and replying to messages online. Eventually, he got it. He, her parents — Lee and Julie Bowman — and her extensive network of family and close friends would do anything they could for her, but they just couldn’t always do what she needed, he said.

They couldn’t tell her about a new drug just out of clinical trials that may help alleviate a side effect she was suffering. They couldn’t answer her questions about why her toenails were turning black, or how she could focus better when her medications were making her foggy. They couldn’t tell her the names and stories of women who had successfully fought the kind of cancer she had when she crept out of bed at 2 a.m., afraid that there wasn’t any hope, but not wanting to burden her loved ones with that fear.

The women on the sites could.

“It got her through the tough times. It got her through things that we couldn’t help her with, even as her family, because we didn’t have the knowledge, and these folks do,” Clonan said.

When Debbie’s doctor in Anchorage gave up on her six months ago, saying there was nothing more doctors could do, she turned to the Internet, and women on the site pointed her to a new drug just approved by the FDA that ended up being effective against her cancer, Clonan said.

“She brought it to the oncologist in Anchorage and said, ‘This is what I want to be on. Find out about it, will you?’” Clonan said.

All along she took an active role in her medical treatment, doing her own research and being proactive in finding ways to stave off or deal with side effects. During the last course of treatment she was on, doctors said she’d be in the hospital three to five times. She was only in once, toward the end when the drugs started to overwhelm what her fragile body could take.

“It’s truly practicing medicine. They don’t have answers in a lot of cases. A lot of it is finding out how your particular body reacts to drugs,” Clonan said. “My impression is that people don’t take charge of their medical treatment as much as they should.”

Beyond medical knowledge, the sites are a forum for sharing general support. People post poems, pictures, jokes and stories. When someone’s having a tough time, the network responds by sending cards or small gifts. Debbie at one point got around 100 cards in the mail within three days of posting a comment that she was feeling low, Clonan said.

“Any way that they can possibly help a person, they do,” he said.

And she returned the favor, signing on as Alaska Deb and sending her own notes, gifts and tokens of support, or even checks for $20 here and there to help a friend be able to afford a prescription. She also attended a get-together in Upstate New York of several women from the site in 2007, which they dubbed Pinkstock — pink being the color of breast cancer awareness.

This winter, Clonan started participating in the sites, as well, forming his own friendships with some of the women close to Debbie, especially near the end when he desperately searched for treatment information and advice.

“When you’re sitting at home by yourself, especially in Alaska, we’re kind of cut off a little bit. It brings everyone together,” he said.

Debbie’s death served as a rallying point that Clonan didn’t see coming. He said he didn’t even know how to tell the people on the site that she’d passed away.

“I didn’t know what to say. I didn’t want anybody to be discouraged or give up or anything like that,” he said.

He got a phone call from one of Debbie’s online friends, Traci, from Dallas, or “Trip Neg,” as she’s known online, and he asked her to let everyone know about Deb’s passing. On Jan. 26, she posted that “Alaska Deb is our newest angel.” Since then, the post generated 338 responses as of Sunday, from women all over the globe sharing a story of how Debbie touched them in some way. The stories, jokes, photos, poems, memories and tributes form a testament to how one woman, even in little Sterling, Alaska, can have a huge impact on others.

“They started talking about Deb, how sorry they were, how inspirational she was,” Clonan said. “It was amazing how many people have commented since she passed away, and some even said, ‘I didn’t correspond with her myself, but I always read her posts.’”

On Jan. 27, another online friend started a new thread — a topic of discussion — suggesting that people touched by Debbie send a single pink rose to her memorial service. The idea immediately took off. As of Sunday, there were 404 replies posted, resulting in the sea of about 200 pink flowers lining the front of the altar at Soldotna Bible Chapel on Jan. 31.

Debbie’s online friends also contacted Gov. Sarah Palin’s office, asking her to attend the service (she was in Washington, D.C., at the time, an office aide said) and asking her to donate to the central peninsula Relay for Life in Debbie’s name, Clonan said.

The women are also planning a barrage of e-mails to President Barack Obama’s Facebook page on Valentine’s Day, this Saturday, encouraging him to step up efforts to cure breast cancer.

“They’re asking him to put the country’s money where its mouth is and get this solved in honor of Deb,” Clonan said.

He said he’s honored that so many people not only share his recognition of how special his wife was, but that they’d be moved to do something about it, especially with how much they go through in their own lives.

“These people are just awesome, knowing what they put up with, after having gone through this with my wife,” he said. “I was just amazed at the outpouring of support for Deb and the girls and I. It was just amazing, just unbelievable, and the story isn’t even the flowers. The story is the fact that these people go through such difficult times and they come out of it with such a good attitude and can share joys and fun. It’s pretty impressive.”

Donations to the Central Pensinsula Relay for Life can be made by visiting www.relayforlifeofcentralpeninsula.org. Click on “Debbie Clonan” to access the donation form.

2 comments:

No Surrender said...

I am a woman who was honored to call Deb Clonan, sister, friend, and fellow warrior. She helped me start nosurrenderbreastcancerhelp.org and was an inspiration to all who came in contact with her.

I first met her on breastcancer.org where we instantly bonded. I remember her first post and she was frightened because she was given a diagnosis of the "bad" breast cancer. I was a veteran of that breast cancer so we became instant friends.

A year later, I was diagnosed for a second time and she made buttons that said "no surrender" my screen name, and sent them to everyone in our circle as a form of solidarity and to let me know she and many, many others were behind me in my new battle. When I was feeling bad about losing my hair, she sent me a CD of Bette Midler's "You're Beautiful Dammit!"

We shared beach glass with each other. I would send her mine from New York and she would send me Alaskan glass. We also shared a love for reading and writing and she encouraged me to keep pushing to get things published.

She couldn't have been more of a sister to me than if we were born of the same family.

John is a hero to all of us who knew Deb, because his love for her was deep and abiding and he was nothing short of an angel on earth taking care of her when things got difficult.

I will always love Deb and I carry her in my heart always.

Thank you, for such a beautiful tribute to her.

Sincerely,
Gina Maisano
No Surrender Breast Cancer Foundation

Unknown said...

I knew Deb when she lived in Michigan as I was a kindergarten teacher to her daughter, Carol. Deb was always the first to volunteer, upbeat and very loving and supportive to her family. I am sorry to read that she passed some time ago.