Taking Steps — Empower, Educate, Advocate…

Fifteen months have passed since my life took an unexpected turn with a diagnosis of metastatic breast cancer. Since then, anytime there is silence on our social media accounts, I get private messages asking, ‘How are you doing?’ And it warms my heart to know that you're with me on this journey.

My weeks are a symphony of scans and appointments, a continuous rhythm that has become my new normal. And yes, I will always be on one or another type of chemo. And no, I won’t be done with it. Ever. When it comes to discomfort, I have pain. I’ll always have some pain, but I can live with it.

To those friends and family who have followed my journey through this blog, you remember the challenging six months leading to my diagnosis. The confusion, the fear—those emotions were all too real. And the emotional toll that followed was profound. The statistics were terrifying.

“Only one-third of women diagnosed with metastatic breast cancer in the U.S. live for 5 years after diagnosis.”

I needed some space to get comfortable with my diagnosis. I needed time to find my strength and search for a purpose for the time I have left. Yes, writing is our profession. It pays the bills, so that had to continue. But there were deeper questions that kept me up at night.

What more can I do with the time I've been given?

How can I help people who are going through the often scary stages of diagnosis?

How can I support others living with MBC, now and in the future?

Jim and I have always believed in the power of giving back. Early in our marriage, our wise landlord, Tom Kepple, shared a lesson that stayed with us: "Always give more than you take." In a way, his words were an echo of Martin Luther King, Jr.: "Life's most persistent and urgent question is, what are you doing for others?"

With those words as our guide, Jim and I decided to dedicate our time and energy to advocacy. I found my calling in patient advocacy, while Jim is getting involved with caregiver advocacy.

Advocacy starts with each of us, as individuals, speaking up. It's when the appointment schedules don't align with our lives, when medications bring debilitating side effects, when second and third opinions are essential. And later, it’s when we share our experiences, offering empathy and practical insights.

Breast cancer is a multifaceted challenge, and my focus is on helping patients ask questions and finding resources. I decided early on to share my journey, and hopefully, to inspire others in embracing life fully.

The realm of advocacy is vast and unending, but I'm committed to immersing myself in it, learning, and being a voice for change. As I prepare to attend my first in-person medical conference as a patient advocate, I'm mindful that there are no long-term guarantees for MBC patients like me. However, I refuse to let statistics define my path. I am a unique statistic, ready to empower, educate, advocate…and live.

Who needs a bucket list?

How many times have you heard someone ask, “What’s on your bucket list?”

I’ve always been a fan of lists (not necessarily the ‘bucket’ variety…but lists). I find that writing something down tends to make my goals real and tangible and to hold me accountable. Also, it helps with remembering things. But that’s another story.

So, how about a bucket list? Do you have a list of things you want to do before you 'shuffle off this mortal coil'?

This is a concept so deeply ingrained in our current culture that there are multiple self-help books and websites dedicated to helping you create your own bucket list.

You don’t have one? No worries. You won’t have any trouble finding friends and family (along with those books and websites) who’d love to build or expand your bucket list. They’ll come up with things like visiting the Seven Wonders of the World, climbing the Swiss Alps, spending a week in a Buddhist monastery in Bhutan or at an all-inclusive resort in Bali, etc. Things to do before you die that will push your limits or broaden your horizons and help you live your best life...more or less.

• Well, Jim and I don’t have a bucket list. Now, why is that?
   Because in the course of working and raising our children, we wrote and we wrote and we wrote. Writing was something we could do together, help pay our bills with, and even ‘live’ the adventures of our characters. And we got to see a bit of the world through our research and the conferences we attended. We loved and still love what we were doing.

• Because for many people, making a bucket list has come to incorporate one-upmanship.

• Because no two people see life the same.

 What does that last point mean? How many times does someone recommend and really pump up a book, a movie, a vacation package? Then, you take the recommendation and go into it with high expectations, only to be disappointed. Basically, your experience does not live up to what you imagined it would be. Now, if you read that same book, watch that same movie, or go on that trip without all the buildup—with only the mindset that I’m going to enjoy this, for there’s no high expectations—then the chances are that you’ll really enjoy that experience.

Now, are there places we’d like to visit some day? Yes, absolutely. Are there things we’d like to do that we’ve never have done before? Yes, for sure. Do we make a list of them? No. Especially not now.

These days, my bucket list couldn’t even include going to the dentist for my semi-annual cleaning. My oncologist finds that too compromising for my condition.

I recently read this passage in a Psychology Today article: “Building up the items on your bucket list in a way that your life is not complete [without them] is bound to leave you disappointed.”

No disappointments here. My life is complete, and I have so much to be thankful for. But Jim and I are definitely interested in going on spontaneous (and planned) getaways…oncologist permitting. Bali and Bhutan are not in the cards, but we might take that road trip up the Pacific coastline…

How about you? Do you have a bucket list? What do you think of it?

A friend has been kind enough to set up a GoFundMe fundraiser.

Here is the link to that page.

Thank you!

The Linen Skirt is Back!

Do you have a piece of clothing in your closet that is over a decade old? Maybe two decades? Did you contemplate donating it but at the last minute the sentimental value had you bury it deeper in there? Even though it no longer fit. Or the color was faded. Or the fabric was just a little frayed along the edges.

For me, this precious piece of clothing is a long linen skirt that I bought back in 2002. Moved across the country, washed so many times, packed and repacked and pushed to the darkest corner of the closet, this was the skirt that I wore to thirty sessions of radiation while I was going through treatment for my first bout with breast cancer. The skirt was my good luck charm, my happy skirt, my I’m going-to-surface-on the-other side-okay garment.

So, guess what I was doing this morning at 6:00 am, deep in my closet? Looking for that linen skirt. And I found it. And I wore it. And it fit! After a thirty-pound weight loss over the past four months, a lot of clothes now fit.

This morning, I wore it to my first ‘official’ chemo treatment.

Many of you have either been through it yourself, or you have family or friends who have gone or are going through cancer treatment, so let’s not talk about the side effects (though some of them appear to be instant and affecting me right now). Instead, let’s talk about the kindness and compassion of nurses and doctors who work in oncology and how I truly believe these people are angels on earth.

They get your name right. They have a sense of humor and make you laugh. Before walking into the treatment room, they read about you and then they ask about books and grandchildren and weekend plans. They treat you like a friend and not only a patient. At our request, they even take the time to bring in Marilou (the oncology pharmacist) so I can meet her and thank her in person.

And, of course, they say, “What a cool skirt. Where did you buy it?”

Then Jim and I come home and see all the messages and contributions and love that you have sent us during these few hours that we were gone. Here, today, we are blessed with so many more angels. Every one of you.

Thank you, friends. I’m a writer, but right now I’m a little short on words to express my gratitude for everything that you’re doing for us.

All I can say is that I’m looking forward to the day when I can fold up that skirt and tuck it away until the next battle.

Take a mental survey of your closet and tell me what’s the oldest piece in there. I’ll bet there’s sentimental value attached.