Monthly Archives: October 2013

Dinner With an Angel

This past Friday night my husband Todd and I went to one of our favorite restaurants. I insisted we go because we hadn’t been there since May.  When we heard there would be a one hour wait for a table I felt a bit resigned (and hungry) but I was happily surprised when it turned out to be the best part of the evening.

As we waited, we struck up a conversation with a few people around us. One of them was a gentleman in town on business.  We talked about careers, he’s a franchise owner in Tampa, and I told him that I’m the Executive Director for MyLifeLine.org Cancer Foundation. He shared with us that his Mom was battling breast cancer.  So of course I told him about our services and encouraged him to sign his mom up for a free site so she could more easily communicate with him and the rest of the family as they traveled across the country.  To my dismay, I found myself without any business cards! But, I did have a MyLifeLine.org pen and I gave it to him and said “check us out”.

Unbeknownst to Todd and me, he checked us out right then and there. When he said “the donation is done”.  I was surprised he had made a donation so quickly and of course I thanked him and told him I hoped his mother would look into using our service. He said, “I hope I have helped others with cancer through my donation” and he showed me the receipt.  He gave MyLifeLine.org $1,000! I gave him a hug and said he had definitely made an impact on our organization and those we serve. I have to admit, later when we left the restaurant, I did a happy dance in the parking lot!

Why do I share this? It is to let all those who are facing a cancer diagnosis know, that there are angels like this gentleman out there who are compassionate and willing to help organizations like MyLifeLine.org. Organizations serving families affected by cancer. You don’t have to be alone or feel lonely during your cancer journey. Please consider using MyLifeLine.org if you are facing a cancer diagnosis and if you are not, please tell people about MyLifeLine.org. We are here to be the solution to communication needs that arise during this challenging time, and to ensure that everyone gets the support they need.

Thank you to all our generous donors! You are angels and we are so grateful for you!

Philanthropy – Spotting Acts of Kindness

The holiday season is fast approaching and many people’s minds are shifting towards giving.  As the Director of Development for MyLifeLine.org, I have the pleasure of having seen and met many wonderful philanthropic people over the years. Philanthropy is a word derived from a Greek term which means “love for mankind”.  I can’t think of a better way to describe the act of giving.  Giving your time, expertise or money are some of the most sincere and altruistic contributions to mankind someone can make.  It’s not just about an individual, it’s about a belief; a belief that as a species, we must give back to survive and progress.

I continue to be amazed by the generous acts of many that are sometimes overshadowed by the acts of a few.  While in college I remember standing outside on a cold February night waiting for the bus in downtown Denver.  A younger couple walked out of an Italian restaurant with two bags of food that appeared to be leftovers.  As they turned the corner they noticed a homeless man bundled up in a worn out sleeping bag lying on the sidewalk.  Without hesitation, both of them handed over their food to the very grateful man who thanked them and smiled ear to ear.  It was a simple act of kindness, but one that resonated with me and gave me a bit more faith in humanity.

No matter the organization, donors and volunteers have one thing in common; they are passionate about helping their fellow man/woman. We’d love to hear your story.  What simple acts of kindness have you seen or done?

The Author: Enmar Hilu is the Director of Development for MyLifeLine.org Cancer Foundation, which provides free sites for cancer patients to post updates, coordinate volunteers and ask friends and family to support them philanthropically.

Wiser, Stronger HER-2 Positive Breast Cancer Fighter

September is an important month to me because it was September 2nd 2009, when I was diagnosed with early-stage HER-2 positive breast cancer. Four years later, on September 30th, 2013 the U.S. Food and Drug Administration granted accelerated approval to a new drug, Perjeta. It’s a drug I would have used if it had been available then, and I’m proud to feel like I played a small part in helping this treatment become available.

I was nervous standing in front of the distinguished scientists and leaders as I testified in front of the FDA Perjeta review board, but I felt it was important for them to hear my story, to take a breast cancer survivor’s perspective into account when they made their decision. This is the story I shared:

On September 2nd, 2009, I found out that I had a 2.5 cm tumor in my left breast and after many doctor appointments, and tears, I scheduled a lumpectomy.  In October, 2009, after many hugs, prayers and more tears, I went into surgery.  My surgeon was 3 hours into the surgery, when he had to stop.  He was not able to get clear margins because there was too much tumor in the surrounding tissue.  When my family heard that a lumpectomy was not enough, they describe this as one of the most heart-wrenching moments in their lives.  When I saw my breast, my stomach dropped and tears filled my eyes.  A huge chunk of my left breast was gone.

After I came out of surgery, the first person I saw was my husband.  Steve was trying to be brave, but all I had to do was look into his tear-filled eyes to know that he did not have good news.  He held my hand and gently told me what I feared the most.  I would have to have a mastectomy.  I was stunned, frightened, and angry.  I had to come to grips with the fact that I would have to remove the part of my body that had nursed our children, that was important to my intimate relationship with my husband, and I would have to find blouses that didn’t have darts in them.

Five weeks after my lumpectomy and much discussion with my husband and my cancer team, I had a bilateral mastectomy.  When I had my first look after the mastectomy, I fell backward on my bed in tears.   I had no breasts, no nipples, no chest.  All I had were two long red scars where my breasts used to be.  In the span of 60 days, I went from living a healthy, carefree life to a place of fear, pain and loss.

My chemo cocktail of Carboplatin, Taxotere and Herceptin began December 2009 and finished in March 2010.  I then had 37 days of radiation.  My body had been through so much, I could hardly look at myself in the mirror.  I didn’t feel or look, like a woman.

It took my body two long years to recover.  In 2011, I had DIEP flap reconstruction, which required 4 days in the hospital and many months of recovery, but allowed me to regain my confidence, to feel like a woman again.  As much as I like how my new body looks, this is not my body. It is a reconstructed one.  I can never have MY body back.

If the Perjeta regime had been available to me, it might have been possible to shrink my tumor enough to avoid the radical surgeries that my body had to go through since it is the first drug to be FDA approved as a pre-surgical treatment.  Breast cancer survivors need a fighting chance, one that allows them to retain some dignity and self-confidence, and I strongly believe that having access to Perjeta will give them that chance, as well as the chance for the best possible outcome.

Cancer creates warriors and warriors need to be armed with all the ammunition they can to fight this horrible disease.  Perjeta can be the difference between that dark, scary place and one filled with hope. For the 25% of MyLifeLine.org members who are fighting breast cancer, early access to treatments, such as Perjeta, is critical.

I’m not on the payroll of a drug company, but I am grateful the FDA approved Perjeta for early stage HER2 positive breast cancer patients, so they can have access to this treatment option and become stronger, wiser, fighters.

 

If you’re a cancer patient or caregiver looking for your own place to write a blog or journal, you can sign up for a free site at MyLifeLine.org.