For a good book on a personal experience with a mastectomy, read Betty Rollins' book, "First You Cry". I cried with her and yes, there was even one part of the book that brought tears of laughter to my eyes. (My husband couldn't see the humor. Only someone who had undergone a mastectomy would.)
Oh, how I wish I had a book like that when I had my mastectomy. I wouldn't have felt so alone.
Monday, March 16, 2009
6 weeks, the dressing disaster
As I said, at 6 weeks I could put my hand up over my head. I was so proud of the accomplishment that I decided to wear a pull over blouse with a zipper up the back to the surgeon's office for a checkup.
When I arrived, I proudly showed the nurse what I had done. She was proud of me, too, until we both realized that I couldn't get it off easily. My arm was tired and aching and just didn't feel like the struggle of getting the blouse off.
But struggle we did. Eventually it came off but only with the nurse tugging along with me. When the doctor came in the room, I showed him how I could raise both arms over my head. His response? "I knew you could." He had faith in me when I didn't have much in myself.
But I knew I could never get that blouse back on. The nurse let me borrow the hospital gown to get home. Must have looked a strange site but I walked out of the clinic as if everyone wore a hospital gown home. I never wore that blouse again.
When I arrived, I proudly showed the nurse what I had done. She was proud of me, too, until we both realized that I couldn't get it off easily. My arm was tired and aching and just didn't feel like the struggle of getting the blouse off.
But struggle we did. Eventually it came off but only with the nurse tugging along with me. When the doctor came in the room, I showed him how I could raise both arms over my head. His response? "I knew you could." He had faith in me when I didn't have much in myself.
But I knew I could never get that blouse back on. The nurse let me borrow the hospital gown to get home. Must have looked a strange site but I walked out of the clinic as if everyone wore a hospital gown home. I never wore that blouse again.
The answer? Exercise
The answer? Get that arm moving ASAP.
Thank God for the ladies from Reach to Recovery. Waldean and Dorthy saved the day. What did they do? They made me feel normal again. They taught me how to exercise the arm to regain full mobility again.
The first exercise was learning to crawl the wall with my hands. With my forehead placed against the wall, I placed my hands at shoulder level and slowly crawled my fingers up the wall. It didn't seem like much, but when you had one arm that didn't want to move at all, every inch was an obstacle. Each day, I aimed a bit higher. My goal was to have both hands over my head within 6 weeks. Waldean and Dorthy warned me that it might take me much longer. Four times a day, I crawled the wall.
The second exercise was easier. Dorthy had brought me a small ball similar to what was on a paddle ball. I held the ball in my hand, squeezing it slowly, beginning with 5 times each session. Four times a day (and many times in between), I squeezed the ball. I could feel the muscles pulling under my arm.
The third exercise involved tossing the ball. Oops! That ball on the end of the rubber band can be painful when it bounces back and hits the chest. Better aim differently. Four times a day.
The last exercise needed help at home. My husband tossed a rope over the door between two small nails. I would put the paralyzed arm on the lower end of the rope and gently tug the arm, higher and higher each day.
I wanted to move my arm. I wanted to show the doctor I could do it.
And I did. 6 weeks, I could hold my affected arm above my head. barely. But I could do it.
Thank God for the ladies from Reach to Recovery. Waldean and Dorthy saved the day. What did they do? They made me feel normal again. They taught me how to exercise the arm to regain full mobility again.
The first exercise was learning to crawl the wall with my hands. With my forehead placed against the wall, I placed my hands at shoulder level and slowly crawled my fingers up the wall. It didn't seem like much, but when you had one arm that didn't want to move at all, every inch was an obstacle. Each day, I aimed a bit higher. My goal was to have both hands over my head within 6 weeks. Waldean and Dorthy warned me that it might take me much longer. Four times a day, I crawled the wall.
The second exercise was easier. Dorthy had brought me a small ball similar to what was on a paddle ball. I held the ball in my hand, squeezing it slowly, beginning with 5 times each session. Four times a day (and many times in between), I squeezed the ball. I could feel the muscles pulling under my arm.
The third exercise involved tossing the ball. Oops! That ball on the end of the rubber band can be painful when it bounces back and hits the chest. Better aim differently. Four times a day.
The last exercise needed help at home. My husband tossed a rope over the door between two small nails. I would put the paralyzed arm on the lower end of the rope and gently tug the arm, higher and higher each day.
I wanted to move my arm. I wanted to show the doctor I could do it.
And I did. 6 weeks, I could hold my affected arm above my head. barely. But I could do it.
Paralyzed
Most frightening of all was the inability to use the affected arm. The partial paralyzation of the arm was something I really wasn't prepared for. It wasn't a subject we had ever discussed.
I couldn't move my arm. I couldn't dress myself, at least not anything that went over my head or had a back opening. For anything that needed two hands, I only had one hand that functioned at full capacity.
I couldn't roll my hair with one hand. Pulling on panty hose with one hand was a real challenge. Driving a stick shift was almost impossible. Forget opening jars or lifting over my head. Wasn't happening.
I know many people must go through life without extremities and have learned to deal with the situation very well. I have been astonished at how well some have adapted. I was ashamed that I was grieving the loss of an ability that others never had.
I couldn't move my arm. I couldn't dress myself, at least not anything that went over my head or had a back opening. For anything that needed two hands, I only had one hand that functioned at full capacity.
I couldn't roll my hair with one hand. Pulling on panty hose with one hand was a real challenge. Driving a stick shift was almost impossible. Forget opening jars or lifting over my head. Wasn't happening.
I know many people must go through life without extremities and have learned to deal with the situation very well. I have been astonished at how well some have adapted. I was ashamed that I was grieving the loss of an ability that others never had.
The Look
Everyone is afraid of being left with IT. What is IT? IT is the mastectomy scar.
At first I was afraid to look at my chest. I didn't want to see that vacant spot where once I had a breast. My eyes avoided my chest whenever the nurses changed the dressings. If I didn't see it, it didn't exist. Right?
Realilty was a different story. The incision started at my shoulder and traveled down below the breast area. The stitches formed a neat little row. There was no muscle left. The skin stretched tight over the rib cage.
Because the nerve endings had been disturbed, for awhile I could feel hot or cold drinks as if the drinks were dribbling down the outside of my chest. That was a new experience and lasted until the nerves were healed.
The scar was only the beginning of the road I was to travel.
At first I was afraid to look at my chest. I didn't want to see that vacant spot where once I had a breast. My eyes avoided my chest whenever the nurses changed the dressings. If I didn't see it, it didn't exist. Right?
Realilty was a different story. The incision started at my shoulder and traveled down below the breast area. The stitches formed a neat little row. There was no muscle left. The skin stretched tight over the rib cage.
Because the nerve endings had been disturbed, for awhile I could feel hot or cold drinks as if the drinks were dribbling down the outside of my chest. That was a new experience and lasted until the nerves were healed.
The scar was only the beginning of the road I was to travel.
Thursday, March 12, 2009
First Ladies
I'll never forget the comment my OB/GYN said to me after my mastectomy. He stood by my bed and said, "Well, how does it feel to be a first lady?"
First lady? Let me explain.
Prior to my surgery, Betty Ford, First Lady of the United States of America, had faced the giant breast cancer. Happy Rockefeller, the Vice-President's wife, had also undergone surgery for breast cancer. I had joined an exclusive club. The club of breast cancer survivor.
Mrs. Rockefeller faced her breast cancer quietly. The press left her alone. Mrs. Ford had to be public with her breast cancer. Every move she made was scrutinized by the press and the public. We never allowed her the privilege to grieve her loss in private.
Mrs. Ford became my hero. Because of her loss of privacy she faced other demons. I find no fault with that. Yet, in spite of those demons, she set out on a path to help other people. Betty Ford took her pain and suffering and turned it around so others could get relief from the demons in their lives.
Thank you, Mrs. Ford. Thanks for being a shining example. Thanks for being my hero.
First lady? Let me explain.
Prior to my surgery, Betty Ford, First Lady of the United States of America, had faced the giant breast cancer. Happy Rockefeller, the Vice-President's wife, had also undergone surgery for breast cancer. I had joined an exclusive club. The club of breast cancer survivor.
Mrs. Rockefeller faced her breast cancer quietly. The press left her alone. Mrs. Ford had to be public with her breast cancer. Every move she made was scrutinized by the press and the public. We never allowed her the privilege to grieve her loss in private.
Mrs. Ford became my hero. Because of her loss of privacy she faced other demons. I find no fault with that. Yet, in spite of those demons, she set out on a path to help other people. Betty Ford took her pain and suffering and turned it around so others could get relief from the demons in their lives.
Thank you, Mrs. Ford. Thanks for being a shining example. Thanks for being my hero.
The Surgeon
It has been almost 34 years since the first time I walked into the surgeon's office. I didn't know him. I had chosen his name from a list. I thought I could hide the fear behind a bravado spirit. I was young and in those days, didn't have a clue what to ask and I didn't know enough to be afraid.
Were there such things as chemo in those days? I really don't know. I don't remember ever having that conversation. While my outside was calm, my insides were in a turmoil.
I remember after the surgeon examined me, he took a look at the radiology report that said the lump was a cyst. His comment was, "That is no cyst. That is a lump and if it is cancer, I do a radical."
Radical? I knew a little bit about that. The church pianist at my father's church had undergone a radical. In those days, no one talked about breasts. Breasts were a secret topic. Did society think the disease would go away if no one talked about it? or that women would be less afraid if they knew nothing?
By the time I checked in for surgery, I had already heard the comment from the GP about lumpectomies and had that to chew around a couple of weeks. I didn't ask anything else.
I went into surgery, believing the doctor knew what was best for me. He had a calming voice. He knew the path I was facing. I was at a fork in the road in my life.
The surgery lasted over four hours. The initial lab work identified the lump as malignant. I lost a lot of blood during surgery and the surgeon fought to keep me from going into shock. The result was a radical.
Later when I woke up, I saw the blood dripping into my veins. I saw the IV and felt the heavy bandage on my chest. The drainage tubes were tight under the skin, pulling and hurting. Around me, nurses were talking quietly as they tended my needs. I was aware, but not awake enough to tell them I could understand their conversation.
A friend who worked in the lab at the hospital came in to check on me. I had not been awake enough when the surgeon came in to discuss the surgery. But, from the nurses' conversation, I knew something frightening had happened during surgery. I looked at my friend and said, "When did you know what had happened to me?" Believing I knew, she said she knew as soon as she got to work at 9 that I had lost a lot of blood and they were fighting to save my life.
My friend went to the employee lounge and overheard the GP asking my surgeon if I knew about the mastectomy. That was when my friend learned that the surgeon had not been able to talk to me and I had trapped her into telling me the truth.
After my friend left my room, I dozed off. The next time I awoke, my surgeon was sitting on the side of the bed, patting my face, calling my name. I opened my eyes. I saw the tears slipping down his cheeks as he said, "I am sorry. I am so sorry. I had to take it all." For 34 years, I have not forgotten his tears. He cared. The surgery he performed that day was not done out of some wish to butcher a young woman. He performed the mastectomy to give me the best chance at life possible.
From the list of five surgeons, I am so grateful, God led me to this surgeon. From the jungles of two tours of duty in Vietnam, to the halls of Walter Reed and now to civilian life, the toughness he showed with his decisions were softened by the heart of God.
The following months and years were difficult. Yet, through it all, my surgeon was there to make me mad enough to fight for myself. Fight to want to live. He never let me forget I had value. I was important.
There was a reason God allowed me to face breast cancer and a radical mastectomy 34 years ago. He knew the journey I faced. He placed me on this journey to share with other women and their families.
Today, what is my choice? Today my choice is life. I would rather be flat chested and live than keep the breast, have my immune system destroyed by chemo, burned by radiation and have my life shortened.
I am so grateful. Thank you doc, for healing me.
Were there such things as chemo in those days? I really don't know. I don't remember ever having that conversation. While my outside was calm, my insides were in a turmoil.
I remember after the surgeon examined me, he took a look at the radiology report that said the lump was a cyst. His comment was, "That is no cyst. That is a lump and if it is cancer, I do a radical."
Radical? I knew a little bit about that. The church pianist at my father's church had undergone a radical. In those days, no one talked about breasts. Breasts were a secret topic. Did society think the disease would go away if no one talked about it? or that women would be less afraid if they knew nothing?
By the time I checked in for surgery, I had already heard the comment from the GP about lumpectomies and had that to chew around a couple of weeks. I didn't ask anything else.
I went into surgery, believing the doctor knew what was best for me. He had a calming voice. He knew the path I was facing. I was at a fork in the road in my life.
The surgery lasted over four hours. The initial lab work identified the lump as malignant. I lost a lot of blood during surgery and the surgeon fought to keep me from going into shock. The result was a radical.
Later when I woke up, I saw the blood dripping into my veins. I saw the IV and felt the heavy bandage on my chest. The drainage tubes were tight under the skin, pulling and hurting. Around me, nurses were talking quietly as they tended my needs. I was aware, but not awake enough to tell them I could understand their conversation.
A friend who worked in the lab at the hospital came in to check on me. I had not been awake enough when the surgeon came in to discuss the surgery. But, from the nurses' conversation, I knew something frightening had happened during surgery. I looked at my friend and said, "When did you know what had happened to me?" Believing I knew, she said she knew as soon as she got to work at 9 that I had lost a lot of blood and they were fighting to save my life.
My friend went to the employee lounge and overheard the GP asking my surgeon if I knew about the mastectomy. That was when my friend learned that the surgeon had not been able to talk to me and I had trapped her into telling me the truth.
After my friend left my room, I dozed off. The next time I awoke, my surgeon was sitting on the side of the bed, patting my face, calling my name. I opened my eyes. I saw the tears slipping down his cheeks as he said, "I am sorry. I am so sorry. I had to take it all." For 34 years, I have not forgotten his tears. He cared. The surgery he performed that day was not done out of some wish to butcher a young woman. He performed the mastectomy to give me the best chance at life possible.
From the list of five surgeons, I am so grateful, God led me to this surgeon. From the jungles of two tours of duty in Vietnam, to the halls of Walter Reed and now to civilian life, the toughness he showed with his decisions were softened by the heart of God.
The following months and years were difficult. Yet, through it all, my surgeon was there to make me mad enough to fight for myself. Fight to want to live. He never let me forget I had value. I was important.
There was a reason God allowed me to face breast cancer and a radical mastectomy 34 years ago. He knew the journey I faced. He placed me on this journey to share with other women and their families.
Today, what is my choice? Today my choice is life. I would rather be flat chested and live than keep the breast, have my immune system destroyed by chemo, burned by radiation and have my life shortened.
I am so grateful. Thank you doc, for healing me.
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