When Maureen Lutz had her mastectomy, the doctor did a great job performing the surgery.
But everybody seemed to forget about the little things afterward -- such as her arm being too sore to reach the water cup on the hospital bed tray. Or that her lips would be dry and cracked, and her feet might swell, making it difficult to wear anything but slippers home from the hospital.
Lutz had prepared for her hospital stay. She brought nightgowns, books and audiotapes to keep her busy. She never opened her overnight bag.
What she needed, she discovered, was a water bottle she could tuck near her pillow so she didn't have to reach for a cup. She needed men's white-cotton ribbed undershirts that would protect her clothing and secure her drain tubes. She needed lip balm and a folder in which to stow the countless instruction sheets she was given.
And she could have used a notepad to keep track of phone calls and write down everything the doctors and nurses were telling her.
"If someone had just told me the right underwear to take to the hospital ... ," Lutz says, her two-night stay and homecoming might have been simpler.
Five months after her surgery, the 58-year-old Ridgefield, Conn., woman was still trying to figure out how to share her experience with other women when her plastic surgeon called. He had a patient who was considering the same mastectomy and breast-reconstruction procedure Lutz had just undergone and was looking to meet someone who had been through it.
Lutz agreed to have lunch with the patient, Katie Greenberg, the next day. The night before, she raced around town gathering for Greenberg the items she wished she had brought to the hospital.
Lutz packed a white shopping bag with a water bottle, lip balm, a white men's undershirt, tissues, a roll of LifeSavers, an empty folder and a notepad. She also brought the right bandages for dressing changes at home.
"She said, 'I want you to have this. It will make your ordeal a little better,' " Greenberg recalled. "It was like my goodie bag in a weird way."
The gift sparked a close friendship and a crusade in which Lutz and Greenberg have become partners.
Since their lunch date a little more than a year ago, Lutz has distributed 250 "Necessities Bags" to women preparing for mastectomies in hospitals.
"Although we are educated in the care, diagnosis and treatment, the reality is that unless you have walked the walk yourself, you cannot fully know what is needed," says Nancy Baccaro, a breast cancer nurse practitioner at the University of Connecticut Health Center. She distributed the first bags to patients last summer and she said they allowed her to offer care that she could not otherwise deliver. The contents of the bag have hardly changed since Lutz gave Greenberg the white paper shopping bag in summer 2005. Unable to pass along her advice to every woman over lunch, Greenberg wrote it in a booklet. She also added a soft pillow to pad the surgical area so patients can wear a seat belt comfortably on the ride home from the hospital. An emery board was added to the hospital-supply packet at Greenberg's suggestion.
The supplies now are tucked into a white canvas bag with subtle silver trim and a lavender logo. The bags are stuffed, so there is no room for women to pack unnecessary items, such as pretty pajamas. And there are no pink ribbons. "I don't want any woman walking out of her doctor's office with a bag that says, 'Guess what, I'm losing my breast,' " Lutz said.
More than 210,000 women are diagnosed with breast cancer in the United States each year.
Lutz says the idea of a woman-to-woman network passing along practical advice and necessities is powerful.
"If someone had walked in the [hospital room] door with a tube of Bacitracin instead of pink roses," she says, "I would have been thrilled."