New Year’s Day 2020

2020 is here.  Each new season and calendar change means something very different to me now.  When I was young, I felt the frustration and anticipation of yearning to be older and for time to pass more quickly.  As I’ve gotten older, time seems to move too fast sometimes and not fast enough at other times.

Once I knew that my lifespan will be cut amazingly short, time has taken on a new meaning.  I struggle to remain in the moment at times and other times, I can’t bear to see the moments end.  I sometimes visualize what my boys will look like when they are older, what their children might look like, who they might choose to spend their lives with.  Sometimes that is too hard because I will most likely miss that. When these thoughts become overwhelming, I try to channel those emotions into writing a letter for my boys to open at these key milestones.

If some of most recent studies on lifespans is accurate and my cancer stays in my bones, I can hope for a life expectancy of approximately ten (10) years.  Next March will be my 3 year cancerversary, so that means about 7 years left.  This is better than the 2-3 year median life expectancy of metastatic breast cancer overall, which I will reach in a few months time, but that is still nowhere near enough time.

With these thoughts swirling around in my head, I sat down to think about my word of the year for 2020. My word for 2018 was JOY and that reminded me to find the joy in the every day moments, to look for joy in the moments that did not seem joyful.  I meditated on that word for 2018 and found that if I truly looked for joy, I found it.  I found joy even during the most difficult days.  I read once that what is inside will spill out, so if you are an angry person, when tested anger will come out; that if you are joyful and hopeful, when you are stressed, that’s what will spill out.  I’m still very angry, but I’m working on filling up on good things so that’s what comes out.

For 2019, my word was EMBRACE.   Those of you who know me and my midwestern bubble, all of the embracing and touching expected down here in Miami is such a stretch for me! I’ve gotten used to it so much that when I’m out of Miami, I lean in for the kiss or hug as a habit now. Made for some awkward exchanges when I was in San Antonio for the San Antonio Breast Cancer Symposium, especially with some researchers from other countries.

In 2019, I embraced new adventures that spanned launching my own non profit, taking an official role on the PTA board at my boys’ school, I read poetry in a play highlighting the experiences of those us with stage IV MBC, I linked up with Compassion & Choices as the Miami Action Team Leader, and I was a mentor in the inaugural GRASP program in San Antonio.

2019 was my all in year for terminal cancer advocacy and the first full year of this blog.

For 2020, my word is SACRED. Picking a word of the year is always an adventure. Different words come to me and then I see them everywhere as I begin thinking about choosing one. I firmly believe that God brings to me what I need to be focusing on and He uses whichever word He brings me in ways I don’t anticipate. Whatever it is, I know that it will be an entertaining adventure that will stretch me beyond my wildest dreams!!

Happy New Year!

New Year’s Eve 2019

2017 was a doozy, probably the worst year of my life to date.  2018 and 2019 have been quite different as we continue to recover from 2017 and discover how our lives have changed. Every time I start to think we’ve figured something out, things change. The saying … “the only constant is change” … is something I think about a lot.

So, in no particular order, here are the lessons of 2019 …

  1. We’ve re-discovered in a very different way that living life closely with family can have significant ups and downs.  Having this much close family time for the first time in decades has brought it’s own challenges and navigating those issues as adults is very different from when we were kids. My parents regularly refer to the 6 of us as dragons and when we’re at odds, it’s pretty spectacular in many different ways.
  2. We’ve discovered that as soon as things seem stable and quiet, things change. I experienced my first progression in August of 2019. Progression is when the cancer mutates, figures out how to defeat the cancer medication, and starts spreading again. My progression was “mild” as I only had two new bone Mets, but the fact that the cancer mutated at all was devastating. I am thankful that Ibrance worked for 24 months and I had a good quality of life. Piqray is now my main cancer drug and we’re still working on figuring out how to capture a similar quality of life.
  3. We’ve discovered that being a part of the right community is important for the whole family.  It has taken us a bit of time to find that community, but I think we have found a place where we are all supported and we can be friends with other families.  A “play date” with a bunch of boys is a little different from “play dates” with girls, but we’re figuring out how to make it work for everyone. We attended our first “Friendsmas” this year and have rediscovered the joy of being close to other families and the benefits of being able to lean on others.
  4. My non-profit, Connect IV Legal Services, launched officially in January of 2019 and I’ve been able to connect over 70 families with legal services that they desperately need. It’s hard to describe how meaningful it is to me to be helpful to others, to ease a burden, to provide solutions.
  5. I lost some people I knew in 2018 to cancer but I had no way to know that 2019 would be devastating in the metastatic breast cancer world. The number of young, vibrant women, daughters, mothers, wives, we lost in 2019 has hit me hard. I knew many of them in real life, all of them online, and it’s been one of the hardest things I’ve ever experienced. I am irrevocably changed by the women and men I’ve met and gotten to know who have cancer. They have changed me and I believe I’m better for it.

At the end of the day, family is the most important.  At the end of the day, the boys being healthy, learning to be authentic and growing up with the values we consider important is so key.  If we can help others along the way, then so much better.  Here’s to ringing in 2020 with an even better outlook on life than 365 days ago!

Christmas Day 2019

Christmas has changed quite a bit for me since I was a child. Even though my parents did a lot to remind us what Christmas means to those of us in the Christian faith, it was genuinely mostly about presents. I see this same perspective in my boys. Despite our best efforts and discussions and books and going to church services, I still see their eyes gravitate towards the presents.

Oh to have a childlike view of the world again. When upsets and booboos can be cured with a hug and a kiss. When the worst thing is missing some time with electronics or having to take a nap. When the worries and concerns are confined to brotherly squabbles that are over when someone is tickled. When mom and dad can make all things right with the world.

Those were simpler times and there is literally no greater joy at Christmas time than to see the love and enthusiasm in my boys. For them, the moment is all there is. For them, life is meant to be embraced wholeheartedly and unreservedly. For them, life is simple.

I hope to reclaim some of that, to embrace the moment, to celebrate what my whole heart, and to bask in the love of our Savior and those who want to be with me on this special day.

I close with this Irish blessing …

“The light of the Christmas star to you,

The warmth of home and hearth to you,

The cheer and good will of friends to you,

The hope of a childlike heart to you,

The joy of a thousand angels to you,

The love of the Son,

And God’s peace to you.”

MERRY CHRISTMAS!!

Christmas Eve 2019

By Gary Kowalski

Once more the year’s turned round.
We’ve come full circle on this small planet,
Spinning down the grooves of change,
Another revolution completed around the sun.

Another year older …
Another set of rings on the tree …
As seasons parade in endless procession
The people’s troubles and prayers remain the same:
The worries don’t change.
Generation after generation making the same mistakes,
So many thousands of circuits in a world filled with war and woe,
Full of sound and fury,
Bleared, smeared with toil,
The ebb and flow never-ending,
The grating sound of pebbles which the waves draw back
And fling at their return up the high strand,
Begin, and cease, and then again begin
With tremulous cadence slow,
But bringing us always back to Christmas

Back to a place we’ve always known
Where we’ve never been before,
Back to a time that stands outside of time:
Not part of the regular orbit, but the axis of the year,
A still point, a fixity, the center post and ridge pole
Around which all the rest revolves.

Christmas: Telling us that history isn’t just chasing its tail,
Not merely repeating the same old tired story, over and over
Of dog-eat-dog, might-makes-right, every-man-for-himself, blow
for-blow,
Not a tale told by an idiot,
But assuring us that history has a direction and time has a purpose,
That lines are real, as well as circles
That the human saga has a goal
Still to be realized
Yet mysteriously present, already here among us,
That the Holy is enacting a new story on the earth.

Christmas is not a creed we have to believe in,
It’s not a feeling that comes and goes.
Christmas isn’t something that happened long ago,
Or didn’t happen, as the case may be.
Christmas isn’t a story we tell
So much as a drama in which all of us have become participants
Whether we feel like it or not,
Whether we believe in it or not,
Whether we like it or not.
Christmas is a reality, here-and-now
Just as love is a reality
And compassion a possibility hidden inside every interaction
Of how we choose to be with one another.

For whether we feel like or not, we are all brothers,
And whether or not we believe it, we are sisters, born of a single womb.
Whether we like it or not
We are all one tribe and share one fate.
Separateness is the illusion,
While interdependence is the plainest fact.

We know it in our heads
And when we know it in our hearts,
Then the center will be everywhere
And the circumference will have no boundaries
And the sun will rise on a new and different kind of dawn.

We join now in meditation.

In this moment of half light, half shadow,
The glow of candlelight and starlight,
We are able to look out upon the world
Not with the eyes of day
But with another kind of vision,
The illumination of faith, not sight,
A twilight where edges soften,
Harsh outlines begin to gentle
And the colors start to fade:
No more white or black, red or yellow,
But one common race of humankind,
And peace descends on all.

In this half light the familiar becomes strangely unfamiliar.
What we thought we knew seems more wonderful and sacred.
Our lives, the people who share our world, the things we took for granted
Seem more precious, more beloved,
And good will is a presence we begin to sense,
Palpable like a pulse, the heartbeat of a great organism, a world praying in unison
For a kinder earth, a more humane future.

Spirit of Candlelight,
Be with us, we pray
When this night has come and gone.
In the glare of conflagration,
In the harsh combustion of events,
Kindle these friendly lights
To guide us on the path.

About the Author

Gary Kowalski. The Rev. Gary Kowalski is a Unitarian Universalist minister and author of many books, including Revolutionary Spirits , Science and the Search for God , and The Bible According to Noah . He served congregations in Vermont, Washington, Tennessee, Massachusetts, and New Mexico

IV: A Documentary Intervention

One of my most favorite things about the trip to DC this year for the Metavivor Stampede and METup’s Die In, was the opportunity to participate in the first public readings of IV: A Documentary Intervention. We’ve been reading the script in workshops via Zoom for the last several weeks and I was familiar with the lines.

Yet

I wasn’t entirely prepared for the emotions of reading the script in front of other people. I wasn’t entirely prepared to see and feel the emotions from the room, from the family and friends of fellow metsters, alive and dead. Not only did they get what we were trying to say, they lived the words we read.

Talk about powerful!

Our words and the emotions behind them encompass the experiences of living with a terminal illness. All of the readers the first night were metastatic. We didn’t have everyone together the second night, but students from Mercer filled in ably. The significance of people reading who 100% get every word cannot be discounted.

On 10/10/2019, Act I only was read before a metastatic and supporters audience. There were literally no dry eyes in the room when we were done and that includes the readers/cast.

Cast and students together after the very first performance of Act I. The people in this picture are some of the most amazing men and women I’ve ever had the opportunity to meet and get to know. They have changed my life. As my dear friend, Emily, says, MBC is the worst club with the best people.

I was privileged to read poetry written by Anya Silver.

m

Emily Garnett read the words penned by Beth Caldwell on her blog and elsewhere. Beth’s advocacy and her exhortations to the world at large and the metastatic community framed the play and the subjects we talked about.

10/11/2019 Acts I and II performed at the Smith Center in DC to a smaller crowd, yet the impact was no less profound.

My 41st birthday

Another trip around the sun, my third since being diagnosed with stage IV metastatic breast Cancer.

When I was a kid, each birthday was a milestone as I got older and I looked forward to each year because I was moving towards something. Turning 16 and getting my license was huge. Voting was a close second. Turning 21 meant attaining adulthood and being able to legally drink, even though that wasn’t a huge draw for me, just the independence and autonomy.

At some point, birthdays weren’t as exciting. Probably around 30 or so. Birthdays became about getting older and, once I got married and then the kiddos came along, birthdays were more about others. It’s so easy to lose the sense of self when you place the needs of others above your own.

I do think that age is just a number. I don’t really feel like I’m 41 and I probably don’t always act that way either. What is beneficial about growing older are the experiences, the perspective, the knowledge that there is more than just right now.

The more are the relationships and the love I have for my family and friends. The more are my husband and children. The more are the tasks left to do, the conversations left to have, the knowledge yet to uncover.

Here’s to what’s next and more trips around the sun.

Christmas List

I love Christmas. The decorating, the gift giving, the family time. It is literally my favorite time of the year. Not just because my birthday is also in the mix, but there’s that too.

As soon as it’s mildly socially acceptable, I break out the Christmas music. The boys tolerate my singing for a song, if I’m lucky, and then they clamor for their own entertainment. One of my favorite CDs is the Pentatonix Christmas CD. For those of you who don’t know, it’s just voices, no instruments.

Every year, I weep when hearing this song …

Grown Up Christmas List by Kelly Clarkson

Do you remember me
I sat upon your knee
I wrote to you with childhood fantasies
Well I’m all grown up now
And still need help somehow
I’m not a child but my heart still can dream

So here’s my lifelong wish
My grown up Christmas list
Not for myself but for a world in need
No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end, no
This is my grown up Christmas list

As children we believe
The grandest sight to see
Was something lovely wrapped beneath the tree
But Heaven only knows
That packages and bows
Can never heal a heartached human soul

No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end, no
This is my grown up Christmas list

What is this illusion called the innocence of youth
Maybe only in our blind belief can we ever find the truth

No more lives torn apart
That wars would never start
And time would heal all hearts
And everyone would have a friend
And right would always win
And love would never end, no
This is my grown up Christmas list
This is my only lifelong wish
This is my grown up Christmas list

As kids, the packages under the tree are pretty much all that you see at Christmas time. The magic of giving and family time and wider concerns are lost on most kiddos and that’s the way it should be. As an adult, though, my list is so very different. The only thing I would add to the list enumerated in the song would be a cure for cancer.

What is on your grown up Christmas list!?