Blog

July 13, 2023

In May I renewed my driver’s license. I remember, five years ago following my MBC diagnosis, this being high on the list of things I was pretty sure that I’d never do again. Since 75% of women diagnosed with Metastatic Breast Cancer don’t live beyond five years, I was fairly certain that I’d die before needing a new driver’s license. 

But here I am, marking my five year “Cancerversary” new driver’s license and all. I am, of course, grateful and happy to have the extra time. Simultaneously though, I find myself a bit baffled about what it looks like to move beyond five years. There is mounting evidence that women with MBC are living longer and that new treatments are being developed at a more rapid pace. While I might not live to see a cure for MBC, there is hope that the disease will be treated as more of a chronic illness instead of a terminal one. As doctors and other women living with MBC have often shared with me: “The longer you live, the longer you’ll live.”

For Dan and me, though, questions still remain: How do we channel the energy we’ve spent getting ready to die into focusing even more on living fully? Can we move beyond thinking about living in three month chunks even as scans continue every three months? When faced with death, and then living beyond what was expected, how do you move forward? What does it take to live indefinitely on meds that often make you feel really crummy and fatigued? What’s our mind frame for this next stage? What even is this next stage? 

So, we are taking this five year mark as a time of reflection (again) and renewal. Renewing our commitment to living each day with joy, intention, love and gratitude. To finding beauty in the small moments. To laughing a lot. To enjoying each other, our family and our friends. To new adventures. To serving our opportunities and not just our fears. 

We are so grateful for all of the love and support we have received over these past five years. It’s not remotely an overstatement to say that we are only at a more grounded and hopeful space thanks to all of the care we have received from so many. And here’s the thing – we are going to keep needing that love and our community even past this five year mark. That’s hard for us to say out loud because we are both pretty bad at asking for help. But, we know that living with an incurable illness and treatment side effects is a grind. And we know that MBC is a sneaky disease. And we know that you can go years with stable scans and then WHAM. So while making it past this milestone is incredibly encouraging, and while we are more hopeful than at any point since July 13, 2018, we also remain fearful and realistic and uncertain, and all gloriously mixed up. 

Here’s to five years. And to whatever is next. And to living and loving fully every day.

Over the course of my career, I’ve written many job descriptions. Actually, I kind of always hated writing job descriptions. How do you capture the essence of a position and how success will be measured? But, every role should have a job description – it’s a best practice.

Right after my diagnosis, Dan went out with his close friend and mentor Kari. She told him over breakfast that he “has a new job – being a caregiver.” That got us both thinking about our roles right now. So, at the time of huge change in our lives – a terminal cancer diagnosis and both of us having different relationships with work – it seemed like we need new job descriptions to guide us.

My “new job” includes some tasks that are exciting and others that are daunting. Some can be easily be addressed in the short term. And, others are more aspirational and have a longer time horizon.  I know I’ll be better at some of my “tasks” than others. But, it’s my hope that this job description will serve to guide me in focusing my energies in this new phase of life.

Here is my new job description . . . .

Be grateful and graceful in all interactions: late-stage cancer is scary for everyone. Be kind and generous with those who put their feet in their mouths. Their words come from a place of concern and love

Look for beauty and purpose in the dying process: create opportunities for reflection

Share love freely: Tell people how you feel about them. Write some letters, send some emails, give some hugs

Comfort, support, guide and prepare my husband, parents, and sisters: be open with feelings and thoughts on end of life, talk and see each other regularly

Share my story and my learnings with others diagnosed with terminal illness: start a blog, write a book

Help educate my community about MBC: no sugar coating or skirting the hard topics

Be my own best caregiver: exercise regularly, rest when tired, take meds, keep doctor appointments, inform care team of new symptoms or side effects

Leave my nieces and nephews with memories of me and fun times together: take pictures, schedule outings, plan a big trip, send postcards and letters

Accept help: let people love and support me by bringing meals, walking the dog, cleaning the  house, etc.

Look at each day as a new adventure: use our “buckets” as a guide, plan each day – even if the plan is to do very little

Stay curious and keep engaged with the world: read, do crossword puzzles, play cards, travel to new places

Put a premium on having fun: do things that make me happy, try new things, express my wants and desires

Plan my funeral, find a cemetery and get my things in order

Overwhelm my husband with love, gratitude, kindness, and good memories

Be gentle on myself: this shit is hard

I can see how a cancer diagnosis can tear a couple apart. The fear, the insecurity and the stress could easily become insurmountable. One of the things we’ve found helpful is to maintain old habits and develop new ones that keep us connected. In fact, one of our new life “buckets” (see our last post for more on those) that we try to practice daily is connection.

For the last three years, Dan has been writing in a gratitude journal every night. I joined him in the nightly ritual about two years ago. Now, each night before bed we take time to write, independently, in our gratitude journals. Just two or three or ten things from the day for which we are grateful. Neither of us goes to sleep before asking the other “did you write in your book?” This shared practice of gratitude keeps us grounded in the positive. (Although, on my dark days I can struggle. And, I admit to a few less than grateful entries.)

A new habit we developed is taking a little time each morning to randomly choose and then read together an Affirminator card. Our dear friend, Beth, gave a deck of these cards to Cassie a while back (you can find them on Amazon). The cards have fun, affirming messages that connect us and get us in the right frame of mind to start our days.

These simple habits have been helping us maintain a closeness and shared perspective.

Here is our Affirminator from today –

“No Need To Do:  I am exactly where I need to be, exactly when I need to be. There’s nothing more I need to do. I mean, yes, there will always be laundry and taxes – but in terms of my life’s path, I don’t need to do anything because I am already here. I take a deep breath, relax, and trust (and then do laundry).”