ANCHORAGE (AP) Jon and Jamie Lang would rather be experts on just about any other topic. But once Jamie felt that lump, they had no choice but to embark on a crash course in breast cancer survival. Like so many others, they stumbled their way through her diagnosis and treatment, learning along the way Jamie, how best to take care of herself; Jon, how best to take care of Jamie. They emerged on the other side a whole lot wiser.
Now, when they can, they mentor other newly diagnosed women and their partners. They tell them what to expect, what helps, what doesn't, what to say, what not to say.
What not to say is a big one. Like the words that tumbled out of a young aide's mouth as she wheeled Jamie out of the hospital after her initial surgery.
''We were just about to the door,'' Jamie recalled, ''and she said, 'My friend just died of breast cancer.'
''I'm like, 'Oh, thanks.' ''
But not everyone has a Jon and Jamie to call upon. When a woman gets some of the worst news of her life, friends and family want to be supportive, but many aren't sure how. That's why it was so important for filmmaker and 11-year breast cancer survivor Mary Katzke to make ''Beyond Flowers: What to Say and Do When Someone You Know has Breast Cancer.''
The film is rich with stories and advice from newly diagnosed women, long-term survivors, their husbands, children, support teams and medical experts from Alaska, as well as across the country. ''Beyond Flowers'' is a guide on how to create an oasis around a woman going through this difficult, life-altering time.
''Beyond Flowers'' is a companion film to Katzke's ''Between Us'' for newly diagnosed women. Katzke, founder of the Anchorage-based nonprofit Affinityfilms Inc., produced and directed the new film along with associate producer Fumiyo Sato.
With the help of donations and grants, copies of the new support film will be distributed free to Alaska women after they're diagnosed, along with ''Between Us.''
''The first breast cancer film, 'Between Us,' has helped hundreds of women in Alaska cope with their diagnosis and treatment and continues to do so,'' said Carla Williams of Alaska Breast Cancer Advocacy Partners. ''Now Mary has offered that same support to the people behind the women their family, their friends, their co-workers, from the casual acquaintance to dear friends. I think the film helps the support people understand their role.''
Jon and Jamie Lang are among Alaskans featured in the film. Jon acknowledged he wasn't so great in his supporting role in the very beginning.
''Well, for stress relief,'' he says in the film, ''I did it the old-fashioned, guy way: I went out and got really drunk one night. ... It was just really difficult.''
''It was so overwhelming for me,'' he said later in an interview at home. ''I was in denial and avoiding everything that had anything to do with it. I mean, I was as 'there' as I could be at the time.''
What made the difference was when other men started approaching him, men who'd gone through it with women they loved. Like a chain reaction, their support give him support so he could support his wife.
Among the ideas ''Beyond Flowers'' suggests is choosing a point person, a gatekeeper of sorts, to answer questions and coordinate offers of food and help so the woman can just concentrate on getting well.
''If you're the husband or the partner, be your partner's press secretary,'' is how Jon puts it. ''Take all the phone calls, answer as many questions as you can. Run it just like the White House. If the president doesn't want to talk, the president is not going to talk.''
Typically, people flock around the woman in the beginning. But one of the most difficult times comes when the chemotherapy is over and the support fizzles because everyone assumes it's back to life as usual.
While the end of treatment comes as a big relief, it's also hard because you're no longer physically fighting the disease, explained Shelley Coolidge, a nurse at Providence Imaging Center who appears in the film. And you can't know for sure that the cancer won't come back.
One truly inspired support group included in the film is Team Towanda of Hartford, Conn., whose members rallied for their friend Judith Melchreit when she was diagnosed. Melchreit and the Towandas went about it a little differently from most. When people asked what they could do for her, Melchreit said she wanted a party.
An artist friend created ''Towanda,'' a sword-wielding warrior, as the alter ego of the support team. The party drew about 80 women and included a life-size cutout of Towanda plus friends donning wigs, hats and fake fur eyelashes, bearing such gifts as ''Hot Hooters Booby Oil.''
Team Towanda was so good at what it did, it evolved into a national phenomenon, creating ''The Charge of the Casserole Cavalry: The Official Towanda Cookbook,'' with proceeds going to mammograms and other breast-cancer detection services for uninsured women.
Jon and Jamie took a similar approach. They had a pre-chemo bash, in which about 15 of their friends shaved their heads in solidarity of Jamie's pending baldness, and several others did the same later. ''Even my parents shaved their heads,'' Jamie said.
And six months later when the chemo was over, they had a post-chemo bash with backyard croquet, barbecue and a bonfire that was so lively, the fire department showed up.
''It was super fun,'' Jamie said. ''It was over ... and it just made me realize I still had tons of friends.''
On the Net:
Team Towanda: www.teamtowanda.org.
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