In 1989, the jury was still "out" concerning the clinical and/or psychological value of support groups. One line of thought among the survivors went something like, "I have my family or friends to lean on, I don't need a support group." Of course, most of the physicians thought it was a bunch of … shall we just say “a waste”?
Dixie was convinced that nothing was more important than The Rose offering a support group. Her ideas were eventually vindicated when a study revealed women who participated in support groups experienced twice the survival rate as those who didn't.
We feverishly reproduced the article, attached it to our announcements about our new Breast Cancer Support Group, and distributed it to the physicians. During those first few months, the only women who attended were Dixie's patients. Eventually, other physicians started recommending the group to their patients. And once they did, the support groups grew.
Dixie's patient's definitely had the advantage. Once diagnosed, she'd suggest they attend a support group meeting prior to their surgery. She didn't make it an order or a big deal. She simply convinced them that they could learn what to expect from other women who’d had a mastectomy or lumpectomy.
The Rose Garden – the name given to the group - met every second and fourth Tuesday. The two particle board desks at the Center would be pushed back against the wall and the mismatched orange and green chairs were moved next to the overstuffed brilliant blue couch to create a makeshift semicircle.
The entire center only occupied 980 sq. ft, of which the reception area was about one-third of it. A huge round pole stood smack dab in the middle of the front area that we tried to camouflage it with plants and coat trees but it never cooperated. Attempting to project images via slides was a joke. We had no room for the screen and the walls were covered from top to bottom with donated treasures or posters. But the speakers came anyway.
And, in spite of it all, the women did as well. At some meetings more than 40 women would gather in that little spot of our world.
Imagine being a first timer and entering a room packed with women who were obviously at different stages of treatment. Some were bald; some were not. Some were old; some were young. A few had family members with them. First impressions of our Rose Garden included the sound of laughter, the din of conversation, and the smells of fresh coffee and sweet food.
The talk didn't let up until Dixie arrived. She usually ran a bit late, dragging in from feeding her horses or stopping by one more patient's room at the hospital. No one cared how late she was. Then, as now, Dixie brought hope into the room.
In those days, our support group wasn’t sanctioned locally by the nationally recognized society of “Cancer Authority.” Seems our facilitator had not completed the certification program, and our group didn’t follow the structured 6 to 8 week program where appropriate topics are assigned for each week. Dixie argued that the women might not be ready to discuss emotional issues right on schedule by week three.
After year one, we convinced the powers that be that perhaps the Rose Garden should be approved. Our cause may have been somewhat assisted when Dixie became the Chair of the Reach to Recovery Group and been assigned as the Physician Liaison for the state-wide Texas Breast Cancer Screening Project.
We followed somewhat of a semi-structured format. We started by sharing articles and lists of new books in the lending library. The prized document of every first timer was Dr. Melillo's Official Vitamin List.
Somewhere between 6:45 and 7:00 PM the support group meetings would start. One by one, each woman would introduce herself and share a little information about her journey.
“I'm Mary Lou and one week after I turned 32 I was diagnosed. That was 13 months ago.” Mary Lou wore a long red wig that had started to look like it was way too much hair for her body which seemed tinier at each meeting. “I'm taking my last chemotherapy this week. I have a nine-year-old who has reached that ignorant stage, she ignores everything and a three-year-old who wants to know where Mommy’s hair went.”
“I'm Dianne and I was diagnosed two years ago but had a reoccurrence. I've got metastasis to the liver and I’ve done the rounds of chemo so the next step is having a bone marrow transplant. It all depends on if everything works out, if the insurance approves it and if my blood count comes back ok.” Dianne's hair was short, her body swollen.
“I'm Margaret and this is my second round with it also. Chemotherapy just isn't working. I had a double mastectomy.” Margaret's daughters always came with her. They sat on either side of her and with mischief in their eyes but still straight-faced tell the group that their mother was really being grumpy lately so they tried to ignore her. “After all,” they countered. “She did have the big C.” The group usually took a second or two to recover and recognize that a big tease had been shared between the three women. The truth of their relationship was revealed as the girls held Maragaret's hand or kept touching the little slips of hair that was left on her head.
"I'm Liz and, like Mary Lou, I was 32 when I had my mastectomy on the right side. A year after my diagnosis, I had to have a mammogram on the other side. This was before The Rose opened so I was going to a different clinic. Well when I got there I found out that the lady at the desk had cancelled my appointment. She said, ‘You're too young to have a mammogram.’ I just looked at her and fired back, ‘Well, Lady, I'm not too young to have breast cancer!’" We would shake our heads.
"I'm Susan and I haven't had my surgery yet." The room would become quieter. "I just got my diagnoses yesterday." She'd continue and someone would begin asking the questions to get her talking. If Dixie were her doctor the others would start telling stories about being a Dixie patient. They'd tell her she was now part of a community that no one would volunteer to be in but at least with Dixie it was tolerable. They talked of being their own alum and how they’d make their 30th reunion.
Everyone always clapped when the gorgeous, well-coifed woman, wearing the prettiest clothes in the world, would say, "I'm Ellen and I'm a 13-year survivor." Of course most of us were more interested in hearing about Ellen’s new boyfriend or her latest travel adventure. Her shiny silver locks confirmed she was pushing 60 but her spirit and energy rivaled any 20-year-old. She was the ultimate volunteer, busy with a dozen organizations including The Rose. Her only reoccurring problem was not having enough hours in the day to do all she was scheduled to do.
Sometimes a woman voiced feeling like she wasn't being a good wife since she couldn't keep up with all the household chores. The others would dive in on that one. “Let it pile up!” they'd say. Occasionally, we’d hear skittish talk of what else a "good wife" didn't feel like doing or how unattractive they felt at times but usually those stories got a little too uncomfortable and just hung in the air, seldom resolved.
The very few dared to talk of their bitterness. No one judged them. The woman would be encouraged to talk out her feelings, but the group had a way of not dwelling in the mire of despair.
Some would share how they were learning to put their needs first and were taking better care of themselves. Some would tell of a friend's kindness, a meal cooked, kids collected and taken away for a weekend.
Dixie would end the meetings saying, "None of us knows how long we have on this earth. The only thing we do have is right now, right here and each other. This group has taught me that I need to appreciate every sunrise and every sunset. And I've also learned the importance of hugs." She'd smile and remind everyone, "Hugs are good for the immune system. You can never get enough hugs.”
"Or cookies!" Someone from the back of the room would respond.
The room would erupt in laughter. Dixie would start the rounds until everyone had been soundly hugged. Then we ate and talked some more. Some nights we got out early. Anytime before 10 PM was early.
Dixie and I attended more funerals during those early years than my priest officiated over. I started learning about those sunrises and sunsets, and every other week I was brought to a new sense of awe by the courage found within our little Rose Garden.
*The names of the support group members were changed for reasons of privacy.
This memory is one of 25 short stories written by Dorothy Gibbons, the Co-founder and CEO of The Rose, a nonprofit breast cancer organization. She and Dr. Dixie Melillo received the 501C3 documents for The Rose in 1986. A memory will be shared daily, culminating with number 25 on the day The Rose celebrates its 25th anniversary November 10.
© 2011 Dorothy Gibbons. All rights reserved.
© 2011 Dorothy Gibbons. All rights reserved.
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