Wednesday, May 15, 2013

Angelina Jolie's Courageous Choice


As Featured in the Op-Ed section of The New York Times
OP-ED CONTRIBUTOR

My Medical Choice



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LOS ANGELES
Loren Capelli

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Readers’ Comments

MY MOTHER fought cancer for almost a decade and died at 56. She held out long enough to meet the first of her grandchildren and to hold them in her arms. But my other children will never have the chance to know her and experience how loving and gracious she was.
We often speak of “Mommy’s mommy,” and I find myself trying to explain the illness that took her away from us. They have asked if the same could happen to me. I have always told them not to worry, but the truth is I carry a “faulty” gene, BRCA1, which sharply increases my risk of developing breast cancer and ovarian cancer.
My doctors estimated that I had an 87 percent risk of breast cancer and a 50 percent risk of ovarian cancer, although the risk is different in the case of each woman.
Only a fraction of breast cancers result from an inherited gene mutation. Those with a defect in BRCA1 have a 65 percent risk of getting it, on average.
Once I knew that this was my reality, I decided to be proactive and to minimize the risk as much I could. I made a decision to have a preventive double mastectomy. I started with the breasts, as my risk of breast cancer is higher than my risk of ovarian cancer, and the surgery is more complex.
On April 27, I finished the three months of medical procedures that the mastectomies involved. During that time I have been able to keep this private and to carry on with my work.
But I am writing about it now because I hope that other women can benefit from my experience. Cancer is still a word that strikes fear into people’s hearts, producing a deep sense of powerlessness. But today it is possible to find out through a blood test whether you are highly susceptible to breast and ovarian cancer, and then take action.
My own process began on Feb. 2 with a procedure known as a “nipple delay,” which rules out disease in the breast ducts behind the nipple and draws extra blood flow to the area. This causes some pain and a lot of bruising, but it increases the chance of saving the nipple.
Two weeks later I had the major surgery, where the breast tissue is removed and temporary fillers are put in place. The operation can take eight hours. You wake up with drain tubes and expanders in your breasts. It does feel like a scene out of a science-fiction film. But days after surgery you can be back to a normal life.
Nine weeks later, the final surgery is completed with the reconstruction of the breasts with an implant. There have been many advances in this procedure in the last few years, and the results can be beautiful.
I wanted to write this to tell other women that the decision to have a mastectomy was not easy. But it is one I am very happy that I made. My chances of developing breast cancer have dropped from 87 percent to under 5 percent. I can tell my children that they don’t need to fear they will lose me to breast cancer.
It is reassuring that they see nothing that makes them uncomfortable. They can see my small scars and that’s it. Everything else is just Mommy, the same as she always was. And they know that I love them and will do anything to be with them as long as I can. On a personal note, I do not feel any less of a woman. I feel empowered that I made a strong choice that in no way diminishes my femininity.
I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has.
For any woman reading this, I hope it helps you to know you have options. I want to encourage every woman, especially if you have a family history of breast or ovarian cancer, to seek out the information and medical experts who can help you through this aspect of your life, and to make your own informed choices.
I acknowledge that there are many wonderful holistic doctors working on alternatives to surgery. My own regimen will be posted in due course on the Web site of the Pink Lotus Breast Center. I hope that this will be helpful to other women.
Breast cancer alone kills some 458,000 people each year, according to the World Health Organization, mainly in low- and middle-income countries. It has got to be a priority to ensure that more women can access gene testing and lifesaving preventive treatment, whatever their means and background, wherever they live. The cost of testing for BRCA1 and BRCA2, at more than $3,000 in the United States, remains an obstacle for many women.
I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.
Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.

Angelina Jolie is an actress and director.

Sunday, May 12, 2013

Thank Your Lucky Stars

Yesterday, I participated in Westport, Connecticut's inaugural Komen walk for breast cancer. It was convenient to take part in a Komen event only 20 minutes from home since the only other Komen walk in this state takes place every June in Hartford--an hour away.

This was my fourth Komen walk so I knew the drill. First, there's a survivor's breakfast followed by the survivor Parade of Pink. It was a great milestone to walk with the 5-10 year survival group! After the parade, a guest speaker took the stage. She sported a bald head so we knew what that was all about.  Sheila spoke about getting stage 2 cancer some 10 years ago. She talked about how she did everything she could to maintain a healthy body after her treatment--eating vegan, working out religiously.

Despite her diligent efforts, her breast cancer came back. She is now standing before a death sentence and will have to undergo treatment for the rest of her life. As I stood in the rain under a Parade of Pink poster, I thought about my own diagnosis five years ago--Stage 3 locally advanced breast cancer. Sheila's breast cancer was less advanced than mine and yet there she is. Running the last lap of her battle.

It got me thinking that I should go back to Dr. Fischbach and get an annual check-up. I started wondering if I'm walking around with metatastic breast cancer and I don't even know it. But wait. Sheila said she passed out unconscious when her cancer came back. I haven't had that happen--yet.

Amy, the captain of our team--The Fighting Irish--helped organize the event in honor of her sister, who is also battling stage 4 breast cancer. I introduced myself to Amy's sister and when she asked me if was cancer-free after five years, I was embarrassed to say yes. Like Sheila, her chemotherapy treatments are on-going for the rest of her life.

This disease is unpredictable. Why them and not me? Who knows. I can tell you this much. When I walked in that parade with other women who hit the five-year survival mark, I thanked my lucky stars.

Friday, May 10, 2013

Getting Disability While Undergoing Treatment


I just received this letter that is a great resource to help you get disability while you are under going breast cancer treatment.


Good Afternoon,
I am reaching out to you from Social Security Disability Help—an informational website that works to promote disability awareness and assist those applying for disability benefits. I recently came across your blog and was very impressed by the support and resources you offer to women with breast cancer.

I currently write for the Social Security Disability Help blog and have access to some great information about applying for disability benefits specifically for women who have breast cancer and are in need of financial assistance. I think this material would make a really useful blog post for your specific readership. I’m not sure if you accept guest posts like this, but if you are interested I would be happy to write something up and send it over for you to review.
                                                                                                                                                    
Please let me know what you think! I look forward to hearing from you.

Best,
Molly Clarke
Social Security Disability Help
326 A Street, Suite 1A
Boston, MA 02210
857.366.7629 – Direct
617.800.0089 – Office


Saturday, April 27, 2013

Thanks For Your Support

One of my co-workers, whose sister is battling metatastic breast cancer, has organized the very first Komen Connectictut walk held in our backyard: Westport, Fairfield County. Of course, when I found out about her team, The Fighting Irish, I knew I had to get on board.
I started fundraising by sending out an email blast and posting my Komen participation page on Facebook. Lo and behold, within two days I exceeded my fundraising goal. I also helped my team put its fundraising goal over the top! I can't believe how quickly family and friends jumped in to help with this worthy cause.

Here's a shout out to all those who gave:

My dear friend of many years, Maggie Zakka
My childhood friend Trish Campbell
My Aunt Sue
My cousin and his wife: Tim and Maria Davidson

My new friend who's generosity was huge: Maxine Sheetz
My old neighbor from Minnesota: Jill Bowman
My dear friend and her family whose mother died of breast cancer: Karen Soucy
My former co-worker and long distance buddy: Molly Phillips
And Mom.

Thank you all for making my fundraising efforts a success!



Thursday, April 25, 2013

Help Me Raise Money For Komen Connecticut!

http://transaction.komenct.org/site/TR/Race/NewWrapperRace?px=1455593&pg=personal&fr_id=1211

Welcome to My 2013 Komen Connecticut Race for the Cure Westport Page!

Support Marcy!
Join Marcy's Team!
The Fighting Irish
Marcy C Bruch
60 percent of goal achieved.
Goal: $250.00
Achieved: $150.00
Fundraising Honor Roll
Maria Davidson
Go Marcy Go...all the best from Maxine
maggie zakka
Maria Davidson
maggie zakka
[Stop] [Start]
The Komen Connecticut Race for the Cure                          
JOIN THE FIGHT AGAINST BREAST CANCER TODAY! EVERY STEP COUNTS!

I am participating in the Susan G. Komen Connecticut Race for the Cure, Westport with the hopes of raising as much money as possible to provide for breast cancer education, screening, treatment and research programs right here in Connecticut. While much progress has been made, many women are still going without the services they need.

In celebration of the 1st Komen Connecticut Race for the Cure in Westport, I am joining other participants in asking my friends and family to donate $25 or more, and to forward this page to their own family and friends to raise even more donations.

Please consider making a donation in support my participation in the Race for the Cure and help eliminate breast cancer as a life threatening disease! Use the buttons on the left to make a donation directly to my efforts.

You might also consider registering to participate in the Race for the Cure and becoming a fundraiser yourself! For more information about how to Register - visit www.komenct.org and click on "Race for the Cure".


You may use Visa or Mastercard to donate directly through my personal page. Or, you may mail a check payable to "Komen Connecticut" to Komen Connecticut, 74 Batterson Park Road, Farmington, CT 06032.

Please pass this note to family and friends that might wish to join this important cause.

Thank you!
 
 

Sunday, April 21, 2013

Adjusting To Physical Changes


Adjusting to Changes in Your body and self-image

Courtesy of the American Cancer Society

Cancer and its treatment can cause physical changes. Some people feel insecure about how these changes affect their body and their self-image.

Surgery can change the way you look. Other treatments can affect how you feel. Side effects from cancer treatment, such as weight loss or weight gain, hair loss, and skin changes can also change the way you look. Fatigue can make it harder for you to care for your appearance.
The type of treatment, the drugs and their dosages, and the schedule of treatment all have an impact on the side effects you have. Just how bad the side effects are can vary from person to person. The same treatments may cause side effects in some people and not in others. Be sure to let your doctor and nurse know which side effects you have, if any, and how bad they are.

Your health care team can help manage side effects when they know how treatment is affecting you physically and emotionally. In early cancer treatment, the treatments sometimes cause more illness or discomfort than the cancer itself. Ask your doctor what side effects you should expect and how long they’re likely to last. Also, find out which side effects you need to report right away. You will need to know how to get in touch with your doctor after regular office hours if needed.

Some people find it hard to be hopeful when their treatment makes them feel bad and look different. People with cancer can become frustrated when they do everything right but it doesn’t help, or when treatment must be delayed because their body is unable to handle any more. Sometimes changes in your mood are caused by certain medicines, while other times they may be linked to the stress of coping with cancer and treatment. It’s normal to have ups and downs during cancer treatment.

Body changes from cancer treatment can range from hair loss to the loss of a limb. These kinds of changes can be hard to handle because others can see them. Many people who lose hair choose to wear scarves, wigs, or hats. Some people choose artificial limbs(prostheses) and reconstructive surgery after cancer surgery. Both short- and long-term solutions like these draw less attention to or help hide a person’s physical differences.

Sean, cancer survivor: I had 2 surgeries; the first to remove the cancerous testicle and the second to remove lymph nodes in my abdomen. The lymph node surgery affected how I feel about my body and self-image more than the first surgery. I’m more self-conscious about the scars on my abdomen. I was given the option of reconstruction of the testicle after my first surgery but I wasn’t interested.”
When making difficult decisions, it often helps to talk with others who have had the same type of reconstructive surgery or wear the same type of prosthesis. Ask your surgeon if he or she is able to share photos that show actual results of reconstructive surgery.

Check with your health insurance company about coverage for reconstructive surgery or prostheses. If you do not have health insurance, your hospital social worker may be able to help you find other ways to pay for it. Insurance coverage can be limited either by dollar amount or the number of prostheses (for example, mastectomy bras and breast forms) you can purchase in a certain amount of time.