But You Look So Good…The rest of the story

The rest of the story…

When I wrote the article "But you look so good, how could you be dying? The invisible breast cancer patient," I couldn't have imagined the impact it would have, but I am humbled and grateful.

When writing the article, I was limited by word count and would like to elaborate with some important thoughts. So here is the rest of the story…

First, I titled the story in such a way to get people to learn more about this disease and issues surrounding it. However, I do not think of myself as "dying" but "living with" metastatic breast cancer. I know that time is likely shorter than longer and I do my best to savor each day and beautiful moment focusing on the now… to illustrate how I am "living", here is a picture of me running around my beloved trail on Town Lake in Austin, Texas, during a visit where I had a Pleur-x drain coming out of my lung, to drain fluid.


But for me, in honoring the truth and the lives of those who I have loved and lost, I must not put my head in the sand. I have watched the most faithful, loving, healthy, happy women I've ever met, die. They did not do anything wrong and couldn't have done anything more to live longer. They were hopeful, as we all should be, that we get more time to live our lives and enjoy each day.

Why is it important to talk about it? An incurable diagnosis impacts everyone around us.

Here are a few stories to illustrate why, for me, the truth is so important:

Last year a close friend with metastatic breast cancer went on vacation to Europe skiing. Shortly after returning, the cancer spread yet again, and she passed away within a few months. The point being that she looked well, was active, yet cancer took her quickly. You don't have to look sick to be "terminal" and as scary as it is to think about, we are all terminal-life is uncertain. Live today.

Which leads to the other story... a deep conversation with a woman who had lost her mother to cancer when she was 30 years old, telling me she had not known her mother's cancer was so serious and that her time was limited. No one told her. She grieves for the loss of time in being able to ask her mom the deeper questions she would have.

Does it mean we talk about dying all the time? Heavens no!!! But understanding the urgency of living now is everything. We should all be saying what we need to say, and conscious of making special memories with those we love...all of us.

As to prognosis and how long a metastatic patient has, no one can put an expiration date on our heads. However, we do know some things. We know that when estrogen positive breast cancer spreads only to the bone, people can often get more time than most. I had a close friend living with bone-only mets who lived for nearly 14 years. When the breast cancer type is HER2 positive, women also tend to have longer because of new targeted treatments.

When any type of breast cancer spreads to vital organs such as liver, lungs, or brain it can be more challenging. And for some, no matter what the situation, they respond marvelously to various treatments and can get years, against all odds. And for others, nothing seems to work.

That said, no patient should ever just give up. There are many, many options that we have for extending our lives. So faith and hope combined with knowledge can go a long way…getting second opinions, seeking clinical trials, and engaging with other survivors to learn what treatments are being offered can give us more precious time. I strongly urge any breast cancer patient/survivor to partner with a patient navigation program such as www.NavigateCancerFoundation.org (free service), to help them think through options, questions for their doctors, and clinical trials.

But no one ever LOSES…

This past week, someone shared my story saying, "This is a story about a woman who is losing her battle with breast cancer." Though I so appreciated them sharing the story, and know they were supporting me, I felt like a dagger had gone through my heart. I AM NOT LOSING nor am I a loser. What did I do to "lose"? We don't say people lost their battle with heart disease or diabetes. I never engaged in battle. I have lived strong and will continue to live life fully and joyfully for as long as I possibly can. Please stop using the metaphor that people have "lost their battle". It is painful and puts ridiculous blame on the patient, unknowingly.

Read this provocative article for another perspective on this metaphor.

Everyone has their own way of dealing with a terminal diagnosis, including those around the patient. Some choose not to talk about cancer, a terminal diagnosis, or other issues surrounding life/death. There is no right or wrong way to do this. Everyone has to do it in their own way, in their own time. It is difficult and heart breaking for all involved. But understanding the facts first, can help with those courageous conversations.

For me, talking about it is a part of my journey and what I am compelled to do.

In a country that is so open, there is much left in the darkness when it comes to breast cancer. It is not so pretty and pink. Women and men only die from breast cancer when it becomes metastatic.

Here's to dreaming and working towards a world with no breast cancer, with no mothers, daughters, sisters, or wives ever being lost again (or men).

To learn more and make a difference give to www.metavivor.org, an organization dedicated to funding research for us…it is estimated that only 2% of research dollars are given to understanding metastatic disease-what actually kills the 40,000 women in our country each year.