By Linda Godfrey
At the age of 48, the ups and downs of Barb's life have made it the proverbial roller coaster ride. There were years of learning to live with a diagnosis of bipolar mental illness, overcoming its devastating effects, followed by a bout with breast cancer.
But Barb thought she was at last coasting on level ground when she married Tom Schmidt, her sweetheart of over a decade, two years ago.
Then, last August, she received the crushing news that after five years of remission, her cancer was back, and it had metastasized, or spread throughout her body. With her new world seeming to crumble around her, Barb calmed herself by imagining the one thing she had never done in her life that she still hoped to experience.
A lifelong Packers fan, all she wanted to do was attend one game at Lambeau Field with her husband. But the tickets to Packers games do not grow on any of Wisconsin's many species of trees, and with all her medical costs, she and Tom didn't have the money to buy tickets even if any were available.
Barb was about to learn that miracles still happen.
In December, a Portland, Oregon organization called the Making Memories Breast Cancer Foundation turned Barb's wish into a real experience that is now one of Barb and Tom's most cherished memories. Characteristic of Barb's life, though, even her dream had to struggle to come true, surviving near cancellation due to a misunderstanding by the Packers management.
"It was the greatest Christmas present anyone could ever have given us," said Barb, curled up on the sofa of the modest Elkhorn cottage she and Tom have made their honeymoon home.
Until last fall, Barb had never even heard of the Making Memories Foundation, which was formed only two years ago to grant wishes to women diagnosed with metastasized breast cancer. While new treatments and earlier detection have increased overall survival rates for women with breast cancer to 83 percent (up to 96 percent for those cancer detected in the very earliest stages), the overall 10 year survival rate is 65 percent, and after 15 years, the rate is 56 percent according to the American Cancer Society.
That's because breast cancer can recur and spread many years after the original diagnosis, and once metastasized, it is no longer considered a curable disease. At that point, it is ruled a chronic condition that will eventually end in death for all but two or three percent of those women diagnosed with it.
Metastatic breast cancer often strikes women who, like Barb, are in the prime of their lives, or even younger. Many times it spreads fastest in premenopausal women. But at any age, the medical treatments are expensive, time-consuming and physically demanding.
Most families' resources are strained to the point that "extras," such as long-hoped for trips or ambitions, are out of the question. This is where the Making Memories Foundation hopes to make a big difference in the lives of beast cancer patients.
Barb first became known in this area as the founder of the Alliance for the Mentally Ill of Walworth County, which she started in 1991 with the help of a Milwaukee woman. "I ran it for two years," she said, "put out a newsletter and a monthly meeting with a health care professional every month, I had 50 people at each meeting and 100 people on a mailing list, and it was wonderful. But I got pretty burned out after doing it for two years."
Barb continued to focus on treating her own illness, living in Whitewater and later on, creating woodburned plaques to sell at art fairs around the state. But it wasn't long after she stopped running the Alliance that disaster struck. "In 1994," she said, "I was seeing a doctor in Lake Geneva, and it was just my yearly checkup and I had a mammogram and they said it looked suspicioius. So I went to St. Lukes' hospital in Milwaukee because I grew up in Milwaukee and knew they had a big cancer center there. They did four biopsies and three were cancerous. There had been no cancer in my family at all.
"Within 10 days," she continues, "I had a modified radical mastectomy, and they removed a four-centimeter tumor, which is very large. They took out 21 lymph nodes, and found a microscopic speck of cancer on only one node, which was good news. The doctor said, 'Barb, you're only 42 - we want you to go through chemo (therapy) as insuracne because you're so young, and if there's any chance there's anything there, we want to get it' But he also told me that because my tumor was so large, I only had a 50 percent chance of surviving five years."
Barb visited her doctor faithfully every three months for the next five years, never finding any indication the cancer had returned. Her doctor even told her after two years that he didn't believe the cancer would come back. "If you've gone five years without cancer recurring, many doctors will tell you you're cured. But to me that's an illusion because thery're finding out that's not necessarily true," said Barb.
Barb's five-year checkup would have been in April of 1999. "I was just scared about it, and I asked them to move it up," said Barb. Her doctors obligingly changed her appointment to March. When they found a tumor on her spine that had grown from the original breast cancer cells, they told her it was "by the grace of God" that she moved the appointment, because the tumor had already eaten through part of her spine. If she'd waited til June, her doctors said, the bone probably would have broken and she would have been paralyzed.
Barb had been suffering from pain in her back, but had attributed it to another illness she'd been diagnosed with, fibromyalgia. Fibromyalgia is a chronic condition which causes mild to severe muscle pain through the body, along with fatigue and other symptoms. "Tom and I were very devasteated, because we'd only been married for two years. We were very frightened."
For the next three weeks, five days a week, Barb underwent radiation therapy. "But the doctor told us the 'cat was now out of the bag," she said, "and it wasn't an encased tumor, and my cancer would continue to spread. They couldn't remove the tumor or even do a biopsy because it was too dangerous where it was on the spine. Again we were devastated. We were very much in love, we'd dated for nine years, and neither one of us had ever been married before. My husband is 51 years old, and he'll say to me once in a while, 'Barb, I have to tell you, in 51 years, the best time of my life is the two years that we've been married.'"
Tom, an Elkhorn native and retired farmer who with his long white beard, is often mistaken by children for Santa Claus, bought Barb two things after her second diagnosis.
The first was a dog, a golden retriever named Phoenix Angel, and the second was a computer to help her link up with other breast cancer patients. The computer, it turned out, would become a crucial communication tool in Barb's life.
After her radiation was completed, Barb still had a lot of pain in her bones. Still, she served as honorary chairperson of Whitewater's Relay for LIfe last summer. "Then I ended up in August being put in the hospital because I was suffering from so much pain. Everybody thought it was the fibromyalgia again, and then the following month in October was my next scan. I told my doctor I was afraid of the scans, because every time I have one, something shows up."
Barb's fears were well-founded. The October scan showed tumors had spread all through her bones, in her legs, ribs, neck, spine and lumbar area. The doctor told her that while cells had not been found in her lymph nodes after Barb's mastectomy, cancer can also spread through the blood system, and she suspected that this was what had happened to Barb. Hoping to buy time, Barb started treatment with newer drugs, including one called Aredia that has helped to shrink the tumors in her bones.
It was last summer, though, while Barb was facing the fact that, according to her doctors, her life expectancy had plummeted, that she began dreaming about things she had not yet accomplished. "I was driving around one day thinking if there was one thing in my life I'd like to do, what would it be? I realized I'd never been to a Packers game in all my life. I had heard about the Make a Wish Foundation for children and wondered if there was anything like that for adults."
Barb had always been a sports fan, she said, and as a child, used to pay a quarter to ride the bus to Milwaukee Braves games, watch the game for a dollar, then hang around and cajole autographs from the players. Getting to Packers games, though, had never been so easy. And Tom had never been to a game, either.
Barb decided to try placing a newspaper ad to ask if anyone would bless the couple with Packer tickets, but didn't receive any replies. At the same time, she had joined a breast cancer chat list. "You get up to 150 e-mails from around the world from people that have breast cancer," she said. She also belongs to a second list called "Club Mets," for people who have metastatic breast cancer. "I was writing on there one day to them how I had put this in the paper and this would be fun and too bad there's nothing for adults, and I didn't know about the Making Memories Foundation."
The night before Thanksgiving, Barb received a call from Portland, Oregon. It was Fran Hansen, the head of the foundation. "She said, 'Barb, I'm calling to tell you that your wish has been fulfilled.' I said I didn't know what she was talking about, and she told me a woman on my breast cancer list had forwarded my e-mail that said I wanted to go to a Green Bay Packers Game, and her foundation had worked with the Green Bay Packers to put together a package where they would fulfill this dream for Tom and I."
Needless to say, the couple were very excited. But Barb didn't hear anything more from the Foundation, and the Dec. 12 game they were scheduled to attend was drawing near. "It was the Monday before the game, and so I decided to call this lady," said Barb. Fran Hansen had been on the road, it turned out, and didn't know of any problems but would check things out with the Packers just to be sure.
When Hansen contacted the Packers, she found to her surprise that Barb's whole game package had been cancelled.
Evidently, someone had been making the rounds in Wisconsin over Thanksgiving week advertising themselves as from the Make a Wish Foundation, and soliciting donations. When it became known that these solicitors had no connection with Make A Wish, the Packers assumed the Making Memories Foundation was also a scam, and crossed the Schmidts off their guest list. Luckily, Hansen was able to set things straight and everything was rescheduled. This time the Foundation also included a check to cover the Schmidt's travel and lodging expenses.
On the Sunday of the game, the Schmidts were invited to come early and attend a religious service held for the Packers staff and relations. "From there, the lady from personnel took us down on Lambeau Field. I felt like Mary Tyler Moore, and that I should have a hat and be flipping it up in the air because I was standing on Lambeau Field! Then she said we could go around the perimeter of the field and take pictures of whomever you want. I was running around taking pictures, and Tom was telling people don't worry, this is just my wife and she's just excited."
Barb and Tom were even more elated when they were escorted to their seats, smack on the 40 yard line about 20 rows up. "They were just like the perfect seats," exclaimed Barb. "My husband is normally a very quiet man but we yelled so much during that Packers game that on the way home, he could harldy talk. It was the greatest weekend my husband and I had ever spent together in 11 years. And to think that somebody had done this for us."
In the half year or so it has been able to grant the wishes of metastatic breast cancer patients, the Making Memories Foundation has fulfilled a great variety of dreams. The first person to be helped by the foundation was a Georgia woman named Nancy Kelly, who asked for a family reunion so she could say good-bye to loved ones. Another woman asked for piano lessons for her young daughter, so that every time the daughter played beautiful music, she would remember her mother. One woman was granted a trip to Disneyworld with her family, and another was able to take her 8-year-old daughter to the sold-out Back Street Boys Millennium Concert.
There are also women still waiting for their wishes to be fulfilled. The desires listed on the foundations' Web site run the gamut from a request for help in assembling photo albums to leave behind for family members, to payment for 5,000 brochures to educate others that men can get breast cancer, too.
The dream fulfillment monies are raised through private donations and public fund-raising efforts. Right now, the group is in the middle of an effort to collect wedding gowns from around the country, then sell them nationwide in time for June weddings. Local retailers everywhere are asked to volunteer as collection points, roll up and box the collected dresses, and ship them to Oregon where they will be cleaned and reconditioned for sale.
The foundation Web site also maintains a list of women who have died from this disease as a sort of ongoing memorial. But their focus is on helping women make the most of the time they have left. Founder Fran Hansen states, "It is our intention to make a difference in the lives of people affected by metastatic breast cancer by helping to put reality aside - if only for a few days - and provide the opportunity for loved ones to spend quality time together."
And of course, not all dreams and wishes are possible to grant. Barb Schmidt, for instance, has accepted the fact that she and Tom will never get to fulfill their biggest goal, which was to travel to a foreign country together as Christian missionaries. Barb will be starting a new round of chemotherapy about the time this story goes to print, since cancer cells were found in her liver at her last checkup. Still, she maintains her sense of humor, telling about a suggestion she received from an e-mail pal that the group make up T-shirts for themselves with the logo, "The B-Flats."
"It really lifts your day," she said. "If I'm in pain, I don't have to leave the house to talk with people. The computer is right there."
She and Tom also attend a breast cancer support group at St. Luke's Hospital. "So now my husband had become a big advocate for breast cancer," she added, chuckling. "He is my biggest supporter, and our church is, too (Community Church in Whitewater)" And even though she and Tom can't be missionaries in other countries, she says having cancer has given her many opportunities to share her faith locally. "Maybe if I'd just been Barb Schmidt, maybe they wouldn't have listened," she said. "But being Barb Schmidt with cancer, people are listening to what I have to say.
"We get a lot of people asking us," she continued, "how can you guys be doing so well with all you're going through, and we say, it's not us, it's God who is helping us."
Often, said Barb, she means that literally. "Tom and I were here praying last week because we were out of food in our house, because of my medical expenses. An hour later, there was a knock on the door and members of our church youth group were standing there with bags of food."
Whatever hapapens now in her life, Barb says she intends to keep that positive attitude. She and Tom have been to the Packers game, and that was an unforgettable pinnacle, but the small moments count, too.
"I don't know how much time I have left, but I'd like to make the most of it," said Barb. "I'd like to spend more time with my husband. I was a volunteer driver for the county, but I can no longer do that, so I'm no longer working, and Tom is semi-retired. So we have the luxury of spending more time together, adventuring through life and doing things we've never done before. That's what I look forward to."
And that is exactly what the Making Memories Foundation hopes to enable countless other women with metastatic breast cancer to find: something to look forward to.
phone 1-800-891-3229 or 503-252-3955
write to P.O. Box 92042, Portland OR 97292-2042
or visit the Making Memories website.
Barb Schmidt died of breast cancer on August 9, 2000
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