My little sister Stephanie died of breast cancer when she was 47 years young. At first glance you may think that this is a sad story about a non-survivor. But the opposite is quite true. Through the pain we grow and learn and give future cancer patients hope and ammunition to fight the good fight.

    When Stephanie was diagnosed, our entire family went into shock. Even in our saddest moments we didn’t think she would succumb to this disease. But it was soon determined that she had inflammatory breast cancer (IBC), a rare and very aggressive form of cancer. It occurs in only 1% to 4% of breast cancer cases. There is a 6% survival rate.

    Stephanie never had a chance; mentally and physically she was not prepared to battle.  The medical doctors looked at her like she was already gone and then fear took her over.

    Her doctors didn't know much about this particular kind of cancer, so it took a month just to figure out what kind she had. At first they gave her a general chemo cocktail. Within a week a small lump under her arm grew from the size of a dime to the size of a silver dollar. After discovering the lump Stephanie was afraid to call the doctor because she said she didn't want to look like a nag. When she did get the courage to call, she was told her doctor was on vacation. At that point she screamed, “I am a stage IV cancer victim and I want to talk to a doctor!” The doctor on duty replaced her general cocktail with the strongest chemo drug they had.

    Once she had had the maximum amount (of chemo), there was, in their opinion, nothing left to be done. They took her off all of the other medication and told her to think about trials. At this late stage, they tried targeted radiation on her brain, but the cancer had spread into her lungs and her liver, and it was just too much for this frail, sweet girl.

    On Friday she was told she had six weeks to live. On Saturday she attended her niece's graduation with all of her family there. On Tuesday she waited until our sister Michele and I were with her, and 20 minutes after Michele walked in the door, Stephanie was gone. She died in the loving arms of her two older sisters—pretty much the same way she came in to the world, with us taking care of her.

    We all walk our own paths and make our own decisions. But I think that the best decisions are made after receiving information. If we can learn anything from Stephanie's fight, it is this: With IBC, generally speaking, doctors know less than we do. With this disease—and with any disease—we need to take control of our health care decisions. Ask questions. If you can't ask questions, bring along someone who can. Do some research and then tell the doctors what to do. As one patient on the IBC site said,

Only people living through the initial shock could have possibly understood what I was going through. I found my footing and started focusing [on] fighting the IBC after all the initial encouragement. Someone said (and I have repeated it often), it is like a “free-fall” after diagnosis. You can’t believe it is happening to you, and your family. All the literature was so dismal for IBC, and now I learned to watch the publication dates on articles. There is so much progress on IBC just in the last 2 years, you have to keep looking for answers.

    So that is what I learned. Keep looking for answers. Keep asking questions. And without a doubt, know that you are not alone in the world. There is someone else going through the same thing you are. Find a group that you can relate to and face the battle full on. Fight the good fight. Your survival lies in your own hands.

    I write in loving memory of my sweet, sweet Stephanie. Not a day goes by that I don't feel her living in my heart.