Here, There and Everywhere

Posts tagged ‘treatment’

A Sister’s Promise

imagesInterview with Nancy Goodman Brinker. An excerpt from the book Don’t Just Sit There, Do Something! Grief’s Wake Up Call.

Susan G. Komen was married, with two small children, when she was given a diagnosis of metastatic breast cancer. She fought a valiant fight with every known treatment at the time, until her body could withstand no more, and died in 1980. Before she passed away she had her younger sister, Nancy, promise to find a cure for the disease that was afflicting so many women across the country. Nancy thought the world of her “big sister” and though she was in the depths of despair, and “utter hopelessness”, she promised “Susie” that she would do everything within her power to find a cure.

Two years later, Susie’s little sister, Nancy Goodman Brinker, started the Susan G. Komen Breast Cancer Foundation and brought breast cancer to national attention, becoming the largest private nonprofit group in the world devoted solely to funding breast cancer research. Since 1982 the foundation has raised over 100 million dollars! Over half a million people now run in their annual 5K “Race for the Cure” in cities across America. They were instrumental in getting the U.S. Postal Service to issue a stamp for Breast Cancer Awareness; have galvanized the undergarment industry to provide labels on their clothing which advocate breast self-examinations; and inspired countless well known politicians and celebrities to publicly speak about their personal encounters with the disease. 

NANCY: I came from a large extended family. My mother has been my greatest role model. She was very close to her family. She weathered losing so many she has loved. She was the only child in a family where there were several uncles and aunts. Many of these uncles and aunts were more like older brothers and sisters, because she was an only child. My Mom had nine aunts and uncles combined, who had a total of four children between them.

Mother ended up being a caretaker and very close to these uncles and aunts. Except for one or two, she literally nursed them all until they died. I use to spend a lot of time with her when I was growing up, taking care of some of them, going to see how some were doing; watching her suffer many losses and then of course my sister. Mother always had the most optimistic attitude, you know, “When life gives you lemons, make lemonade.” She lost her mother when she was only twenty, so she taught me about loss. I still find it so very sad.To tell you the truth, even now I don’t know if I have learned to really deal with it. There must come a point in your life where you never stop grieving but you just take action, you just go forward.

I honestly don’t know how my mother has dealt with all the losses in her life, particularly one uncle who she loved very much and was like a brother to her. That was the one time I really saw her fall apart. It took her a long time to get over that one. I saw her crying in bed, grieving. Ordinarily my mother is compassionate and full of feelings, yet also stoic and able to go on. This one took a lot of her . . . this one uncle’s death. He loved, supported, helped and listened. He was just wonderful to her. He was gentle and kind and I think that he rounded out her life, gave her the comfort that a parent would give a child. He was her mainstay.

She had a supportive family with all her uncles and aunts around. She was an only child so I think she was a little more used to being alone then some of us are. But this one uncle’s death was very sudden and it was tough for her. She weathered through it. She is a very special person, my mother.

Loss was a part of our life. We’re Jewish and mother had lost family in Germany during the war. I wasn’t old enough to know about it when the war was going on per se, but I knew to the extent that we had relatives who were lost in Europe and the war. We talked a lot about that and how precious life is.

When Susan died the thing that helped me the most was focusing all of my energy on fulfilling her dream and last request, which was to cure breast cancer. I had to do this in her memory. I really wanted to do it. We had been through such a siege.

Luckily, I had met and married a wonderful man just after having gone through an awful divorce. I think focusing all my energy and working as hard as I could on the Komen Foundation, raising my son, and being a wife, helped me get through a lot.

I don’t really remember anything specific that people said or did, except one person who helped a lot. He was a Rabbi that we had in Peoria at the time. We went to see him towards the end of Susan’s illness. We wanted to know how to deal with the children and how to deal with her. He told me what to say and how to say it. He said, “Don’t lie and tell her everything is going to be OK . . . she’ll be OK. She is not going to be OK. What you have to do is learn to be sympathetic and it is awful, you don’t know why it is happening. You wish it weren’t happening. You don’t know what to do about it. And that you love her very much and you’ll be there till the end and do everything you can.”

As the years have passed I don’t think I miss her any less. I probably miss her more. I’m getting older and would love to have my sister with me. We were best friends. I think in one way your circle of friends and people narrows, it doesn’t grow it narrows. What’s important in my life now is different then it was. I have learned that there are very few people in life who love you unconditionally. I think sisters are like second mothers if you will. There was unconditional love there. We could say anything we wanted and be totally frank.

In a lot of ways the Komen Foundation has fulfilled a lot of what we had hoped for. It’s funny. I’m not a person with supernatural beliefs but we have always said that we have a Komen angel and it’s Susie! When things start to go wrong she’s there, something turns and it goes right. I can’t explain what I mean but believe me it’s there. I don’t believe in angels in the traditional sense, but I do believe in angels. I don’t know what it is, but there is some spiritual holdover. It’s certainly not in the normal body, but there is something to this and I just can’t quantify it. I have felt her presence on several occasions, so I know it’s there. I don’t know how to describe it to you.

One day I was driving in my car, looked up and there was golden light everywhere in the car. It was like a shower of golden light and I knew she was there. It was very, very interesting. In fact, I was driving down to one of our big Komen events, one of our big luncheon events. It was about four or five years after we’d started and I just had this feeling. It was amazing. There have been other times, particularly at the Races for the Cure, when I felt she was there watching. She’s there, sitting up there watching. I don’t mean to say it’s a different world or inhabiting a different world.

There have been many times when I have almost quit this work. I’ll say, “I can’t do it anymore, it is too hard.” Then something will happen, something very satisfying will happen. I have asked for guidance, “Show me what I am doing.” If I listen and watch the cues it always happens that I find what I am after. There is something very spiritual about this work. There is something almost other worldly about it.

I think it is God’s will and I think there is a lot of randomness in life too. I think that if you are chosen to do something or if you put yourself in the path of being chosen to do something, somehow the circumstances all fall into place. Then you have an obligation to do it. I have been very well fed. I am well taken care of. There is no reason for me to do anything else. There is no reason for me not to do this. I must do it. For me to spend my time at anything else would be wrong, just not right.

Just playing and having a life of leisure is not my style. But it isn’t that it is just not my style, it’s also the fact that there is a lot of work to be done. I wasn’t given the opportunity to do what I do without a reason.

Sometimes I get back a lot from the work and other times I don’t. But it isn’t what I get back from it, it’s what happens, it is how well I do my job. If I do my job well and at the end of the day people’s lives have been saved and we have moved along, then I feel good. It keeps refueling the reason for why I’m here. It’s like I am on a mission.

I don’t understand why Susan died and I lived through my cancer. I have no reason to understand it, except that she was born premature and for some reason her immune system may not have functioned as well. I may have been given a longer period of time to do this work. I don’t know. Believe me, there were times I wish I could have fought her battle for her. I think I was diagnosed with this disease to unfortunately understand, on a very personal level, besides everything she went through, what it was.

Looking back there are few regrets. I wish that I had had a little more time to be, well . . . I would have liked to have had another child. At the time they advised me not to. With breast cancer they weren’t suggesting that people go on and have more children. Today it would be different. I missed out on a lot of things with my son when he was young. He’s turned out, thank God. There are times I wished I had had a little more time and hadn’t had to stay up all night worrying about things. I have been so intensely involved in my cause.

I have some wonderful friends, but I don’t think I’m particularly popular on a personal level. I think people like me, basically view me as strong, you know? But there are things, that because I am an agent of change, I’m not the person you would just call to go play with. My friends are wonderful and they tend to include me, but I know they don’t think of me as being a cozy person. I’m intense about everything I do. I’m sure they feel uncomfortable. I wish I were more low key. I’m just not. No matter how hard I try I’m not wired that way. So I try to cope and handle it, but it just doesn’t seem to work out for me.

On the other hand I’ve learned to not be afraid to take something on that seems impossible. My father was my role model for success and achievement. With enough commitment, courage and persistence, especially persistence, you can overcome almost everything. You don’t have to be a rocket scientist. I’m not. I have largely been successful because I surround myself with extremely bright people who are much better at everything then I am. Don’t be afraid.

More inspiring stories at Don’t Just Sit There, Do Something! Grief’s Wake Up Call

Smiling in Rwanda

Brighter smiles with a little help from some friends
ROP Stories
Posted on February 20, 2014 by Sean

Taking care of the health of 100 boys is no cheap and easy task, and looking out for their dental health is no exception. Lucky for us we now have some help. Thanks to Human Resources for Health, an organization that pairs international health experts with Rwandan health institutions in order to improve their level of care, the boys of the Rwandan Orphans Project have been getting free cleanings and screenings as well as reduced cost dental treatment.

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Read entire story and see more photos at ROP Stories.

Donate to Rwandan Orphan’s Project.

My Son Linus

Gabriel,

My son Linus loves to play video games, his favorite food is mac n cheese, and he was born with Asperger syndrome. We take Linus to a therapist for treatment — but now our health insurance company is planning to stop covering his visits, just because he’s turning 9 years old.

I was shocked when I found out that United Healthcare stops covering Asperger’s treatment at such a young age, forcing families like mine to pay thousands of dollars a year to continue caring for our children’s conditions.

I want Linus and kids like him to grow up with the best chance for a full and happy life. That’s why I started a petition on Change.org asking United Healthcare to change its policy and cover treatment for Aspergers and other autism spectrum disorders after age 9.

Click here to sign my petition.

Linus is beginning a chapter in his life when social skills are going to become very important. He has already experienced some teasing and bullying at school from classmates who don’t understand his condition. This is not just heartbreaking for me, but devastating for a kid that doesn’t understand how to do things like everyone else.

As a mom, I worry most about the isolation and depression that many children with Aspergers suffer from. I’ve read that kids with Aspergers are about 30% more likely to commit suicide than the population at large. That is a staggering amount — and it’s why I’m determined to keep Linus and children like him in the therapies that will help them navigate through their pre-teen and teen years.

I’ve tried speaking with several United Healthcare representatives, but so far none of them has offered a solution, leaving my family — and hundreds of others — on the hook for thousands of dollars in treatment costs.

Health insurance companies can set their own policies. I’m hoping that if enough people speak up for Linus and other children with Aspergers, United Healthcare will be forced to reevaluate their policy and set an example to other top healthcare providers. Will you help me fight for my son?

Sign my petition now to join me in asking United Healthcare to continue covering Aspergers treatment for children after they turn 9 years old.

Thank you so much for your help.

Mindy Armbrust
Doylestown, OH
Change.org

Don’t Die!

From Angie’s Diary. Excerpt from Good Grief: Love, Loss and Laughter by Gabriel Constans.

Don’t Die!

I fell in love with Robin the first day we met. She was playing her role, as a recently admitted hospice patient, with great style and flair, while I lumbered through my part as the experienced “seasoned” social worker.

She wasn’t nominated for an Academy Award and didn’t give a damn about her looks. Her body looked like a skeleton with a layer of skin painted on with a thick brush. A blue and green scarf covered her almond-shaped, balding head. Her eyes sparkled like diamonds and her smile hung in the air like the Cheshire cat.

She had a warmth and graciousness that the worst ravages of metastatic breast cancer could not hide. Entering her small, low-income apartment by the sea, felt like entering a sanctuary or coming home for the holidays.

Her one-woman play about a terminal disease had about a two year run.

She talked openly about dying, but more about living. She wasn’t afraid of death, but she loved life. She loved her mother, her boyfriend, her family and friends. She loved music, art, beauty and nature. She was thirty-eight years old and she wanted to live until she was an old woman with grandchildren. She kept waiting for a new treatment, another remission, some kind of hope or miracle. It almost came twice.

An experimental trial with a new drug regime was supposed to be available through her HMO but kept getting put off, then delayed, eventually fizzling away into the land of false promises. Then came the dream of a cure with Angiostatin and similar therapies, which exploded across the media and public airwaves as “extremely hopeful cures for cancer tumors.” Again she was told of some local trials and assured that she was eligible to participate, but this too seemed to fade into oblivion as time slipped by, leaving her to use whatever means she had at her disposal – blood transfusions, medications, hospitalization, intravenous therapy, diet, herbs, detoxification, prayer, meditation, visualization – she tried it all, but the cancer kept chipping away.

STORIES CONCLUSION AT ANGIE’S DIARY

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