Reaching to Recovery: Delivering Pin Cushions & Dispensing Bird Seed
When I awoke from my biopsy and heard the doctor say, “I’m sorry Mrs. Cohen, but it’s malignant,” I looked around to see if there was another Mrs. Cohen in the room. But then I looked from his face to that of my husband and knew I was the Mrs. Cohen he was talking to.
But it couldn’t be …breast cancer. No one in my family ever had breast cancer. They must have made a mistake. Still, the evidence was clear. This was 40 years ago in my husband’s home town of Montreal, and I was not given a choice of what surgery or treatment I wanted. I was told I would either have a super radical or a radical mastectomy. Who ever heard of a simple mastectomy? Or a partial mastectomy? Or a lumpectomy? Or chemo treatments or radiation? And so, the decision was made for me that, on November 11, 1969, I would undergo a radical mastectomy . . . . And good luck.
I remember looking from the window of my hospital room–and this was at a time when windows opened–and thinking maybe I should just end it all. Then I realized that I was on the third floor and should I jump I would probably end up with a broken leg and breast cancer. So I decided to face the surgery head on.
The weekend preceding the surgery was a blur of TV programs featuring women with enormous breasts, magazines with ads showing models I’m sure had the largest cleavages ever photographed and visits from my friends who, up until then, I had never noticed were clearly endowed with more than their ample share of mammary glands. …It was obviously a conspiracy.
The first thing I really remember following the surgery was my doctor asking me if I had any questions. “Any questions?” I thought. Only a few hundred, including how long did he think I would live; how did I go about telling my two young children — Marcie, and Eric. Where did I get something to make myself look even on both sides?
And what would my life be like with my husband? What could I expect his reaction to be to what was then a clearly mutilated body? Would we ever be intimate again? I loved sports and had been a Canadian ski patroller; would I be able to do anything physical again?
“You bet I have questions,” I replied.
“Well,” he said, “maybe you would like to speak to my wife?”
“Your wife had a mastectomy!” I exclaimed, because up to then no one — not one person — I knew or anyone knew for that matter had had or admitted to having had a mastectomy.
“Well, no,” my doctor said. “She hasn’t had a mastectomy but she’s a woman and maybe she’s better equipped to answer your questions.”
“A woman,” I thought. “I know women. My mother’s a woman. My best friends are women. No, I didn’t need a woman. I needed a young mother breast cancer survivor to talk to.”
And so I left the hospital and found, through trial and error, the answers to some of my questions. Then one day about six months after my surgery, I read about Teresa Lasser, founder of the American Cancer Society’s Reach to Recovery in New York City. This program trains women who have had breast cancer to visit with women who are undergoing the surgery in order to help them through the process.
In fact, the volunteers often visit the patient before surgery and answer many of the same questions I had. They then visit again with the patient after surgery. Because as many of you know, when you are facing difficult situations, particularly as your health is concerned, you often don’t really hear what is being said the first time you are told something.
The program itself came about after Teresa had a mastectomy and asked her doctor what she could do to get the strength and flexibility back in her arm.
He told her, whatever she wanted. So being a golfer, she asked her husband to bring a golf club to her hospital room so she could start swinging it–which is exactly what she did, and pulled all her stitches out! This prompted some colorful words from Teresa to her doctor, which resulted in the two of them working on the exercises that would truly help women regain the use of the muscles in their arms. In fact, it was the two of them who put together the entire Reach to Recovery program.
When I learned that Teresa would be in my home town of Cleveland, Ohio for four days to do training for R to R volunteers, I flew there from Montreal and spent the entire time with her. She was wonderful to work with, and when I left I was ready to bring the program back to the province of Quebec.
What I wasn’t ready for was the reception I got from both the Canadian Cancer Society and the hospitals in Montreal. The first thing I said to the Cancer Society was, “Have I got a program for you.”
I think my enthusiasm got them quite excited until one member asked “where did you learn of the program?” When I explained it had originated in New York they all agreed they didn’t want a program that was started in the United States.
Undaunted, I arranged to meet with the surgeons from the 3 major hospitals at their monthly meeting. Again, I told them of the success of the program and how much it was helping women. They in turn told me they “did not want any do-good women in their hospital rooms.” “And besides,” they said, “losing a breast was no big deal!”
I was frustrated, angry, discouraged, and frankly, ready to give up. I decided whatever time and energy I had left I was going to devote to my husband, Lyon, and children. But I believe that coincidence is G-D’s way of remaining anonymous; and that coincidence happened when a cousin of Lyon’s, who was a reporter for a Montreal daily newspaper, approached me at a family event and inquired as to my health. I told her of my dead ends; she then asked if she could do a story on me.
This is where I faced my Waterloo. Yes, I wanted my story out because then I could attract other women who might be willing to help me get Reach to Recovery started.
But Lyon’s cousin wanted to take pictures and use my name, and I wasn’t sure I could do that. Remember, this was the ’60s. No one talked about cancer, least of all breast cancer. And if I agreed to have my face and name used everyone would know. I thought, “Maybe they could use my face and not use my full name or maybe my name and darken out my face.”
And then I decided I had nothing to be ashamed of. I had done nothing to bring about this cancer. I was still the same woman after the surgery that I was before. And so I said, “Yes, whatever it takes to bring this issue to the public.”
Following the publication of the article in the paper over 300 women wrote to me — some interested in getting Reach to Recovery started; others telling me that they had had the surgery 1, 3, 5 years ago, and never left their homes because they were ashamed. They wrote that they would take old stockings and put bird seed in them so that they had something to put in their bra. I called or wrote every one of those 300 women. Remember, this was before computers and email, and 143 showed up for the first Reach to Recovery meeting.
Fortunately for me, the hospital where I was operated on was one of the largest general hospitals in Montreal. It had as its chief surgeon a doctor who had trained in New York and had used Teresa Lasser’s Reach to Recovery program. He was probably the only surgeon in Montreal who knew it worked and was ready to give it a try. And so, after rejections from the Cancer Society and all other Montreal Hospitals, we were able to get the program underway.
There were a few bumps in the road actually, before we could get it off the ground. First, we had to be an established non-profit organization and go through all the hoops that required.
Fortunately for me, my husband was a CPA and was more then happy to fill out all the paper work. Secondly, when a R to R member visited a patient, we were supposed to take a temporary, very light-weight prosthesis with us to give to the woman, should she want to pin it in her night gown or under her clothes when she went home. Well, no one made that prosthesis in Canada, so I took an empty suitcase and drove from Montreal to the New York headquarters of R to R. On my way back through Canadian customs, the guard asked me to open the suitcase and there they were–100 prostheses of all different sizes. He asked me what they were and with a perfectly straight face, and in my best French, said “pin cushions”. …He waved me through.
Several months later I was able to convince Wonder Bra of Canada to make the prosthesis. (Free I might add – and to thank them we put a tag on the prostheses that said “Complements of Wonder Bra of Canada.”)
I remember so clearly one of the first women I visited in the hospital who pulled me to her side and said, in what to us now will appear somewhat humorous but back then was so very sad, “Tell me, dear, does the breast grow back?”
For the next six years, the program expanded in Montreal and was ultimately in almost all hospitals, in both English and French.
The program grew, but so many women died. So many of the women who helped me start Reach to Recovery. I was so sad for them, and so afraid for me.
There was no routine mammography, no self-examination, and no interest or money being spent on breast cancer. I remember taking a walk one day and coming home to find a good friend waiting for me — a friend who fortunately did not have breast cancer but who nonetheless had spent an inordinate amount of time helping me set up Reach to Recovery.
When I saw her all I could say was, “Who died?” And when she told me it was one of my early volunteers I screamed to the heavens, “No more! Please, no more.”
When my family and I moved to Houston in 1977, Reach to Recovery was going strong and more women were passing the five-year survival milestone. Women were going sooner for mammograms, demanding biopsies of suspicious lumps and asking for second opinions.
Through all of this, I had many emotional peaks and valleys. I remember sitting in the window of our home the spring after my surgery, seeing a robin on the lawn and crying uncontrollably; wondering if I would ever see another spring. I remember the nights I would go in to check on my children and watch as my tears fell on their cheeks; wondering if I would ever see them grow into young adults. I never dreamt that I would live long enough to see both my children grow into responsible adults with children of their own.
Marcie told me recently that she grew up with the “super woman” myth, and maybe that’s true. I may have added to that by trying so hard to tell her everything I could because I was always afraid I wouldn’t be there as she grew older. I was so afraid that what I had left with her was a legacy of cancer. I remember when she came to me one day when she was 13 or so, very sad and serious. I said to her, “Marcie, what is wrong?”
And she said, “My breasts hurt and I’m afraid I have what you have.”
And as we talked, I found out that as she was maturing her breasts were tender and she was so afraid that meant she was going to lose her breast. She didn’t even want to tell me this because she was afraid of hurting my feelings. My son Eric went from age 3 to 8 or so thinking that all women had only one breast.
I was very fortunate to have a compassionate and passionate husband and loving and tender family and friends.
I determined early on that, whether or not I had one breast or no breasts, I was a woman by virtue of what I felt in my head and in my heart. And that I would — to the best of my ability — do what I could so that women stopped dying of breast cancer.