Darkness

So there I was, in limbo for FIVE long days and nights not knowing if this cancer diagnosis was going to be just a chapter in my book of life or THE FINAL chapter, THE END.  

I must caution you, the reader, that this post was the hardest and most gut wrenching one to write.  

When faced with the possibility that you might not get to finish this life in physical form with those you love, the mind goes DARK, pitch black...you can’t see your way out but instead have to FEEL your way.

This was my darkness….

Tyler found me sobbing uncontrollably on the living floor after finishing up making my CT scan appointment and getting off the phone with my assigned Breast Center.

“THE DOCTOR ORDERED MORE TESTS! THEY ARE SUSPICIOUS MY CANCER HAS SPREAD!” I shouted at Tyler rising up only to collapse in his arms.

Tyler started crying too.

“Hey, hey, we are going to get through this.  We are going to figure it out.” Tyler said in a calm voice while holding me tightly.

I screamed into his chest, “WHAT IF WE DON’T FUCKING GET TO FIGURE IT OUT! WHAT IF THEY WOULD HAVE LISTENED TO ME WHEN I FIRST BROUGHT THIS TO THEIR ATTENTION?! WHAT IF THIS IS MY LAST CHRISTMAS!?”

“What did they say? What tests do they need?” Tyler asked.

I told Tyler what the nurse navigator #2 shared with me and how I asked if the doctor was ordering the bone and CT scan to check for mets and spread to other organs.

“What does mets mean?” Tyler asked.

“IF THE CANCER HAS F***ING METASTASIZED TO MY F***ING BONES! IF THE CANCER IS IN MY F***NG BONES! IF THE CANCER IS IN MY BONES AND/OR OTHER ORGANS, THIS IS A DEATH SENTENCE. IT’S STAGE IV THEN! I’M DEAD!” I screamed at him.

“I’m sorry.” I said trying to change my tone and volume but unsuccessful as I started shouting, “I AM SO MAD! I AM SO ANGRY THAT THIS IS HAPPENING!” 

“How am I supposed to celebrate Christmas? HUH?” I asked Tyler.

“If this is my last Christmas, then I want to go all out and be with and see EVERYBODY!! BUT on the flip side COVID is so f***ing crazy right now that I can’t get that shit and risk delaying my treatment anymore than its been delayed!!” I added. 

I quickly wiped my face as Lincoln and Maya were now at my feet asking me if everything was okay.

“Mommy is just feeling every emotion right now, sad, angry, scared…all of it.” 

Lincoln looked at me with worried eyes, he’s always been such an empathetic kid, “Mom, are you going to be okay?” he asked.

“Mommy, is just trying to figure out how to get the bad guys out of me as fast as possible so I can watch you grow up.” I blurted out honestly.

“Mom, you are going to be okay.” Maya said softly.

“We will all help!” she added.

“PERFECT!” I said squeezing my kids tightly and not letting go.

Around the same time as all of this was happening, I had been trying to figure out with my insurance company and UCM how my second opinion was going to work.

UCM had been in daily contact with me with regards to their coordinating efforts.

Unfortunately, due to laws and policies it was shared with me, I would not be able to get a 2nd opinion at UCM, even if I opted to pay out of pocket.  

I was extremely appreciative of the effort and work that UCM Breast Center did on my behalf.  

However, I was disappointed that I could not obtain a second opinion. 

As a nation, we have allowed healthcare systems and insurance companies to govern how we receive and access medical care.  It’s all for profit.  Sickening.  

“Who the hell can I trust?  Who has my back?” I thought. “I can’t even get a second opinion, paying out of pocket? How can this be?”

The weight of it all meant no sleep for me or for Tyler  as night fell.

I would snuggle Lincoln and Maya to bed and lay there watching them while they slept with the moonlight shining in on their precious faces wondering what their lives would be like without me in it. 

The sheer thought of it would rip me to shreds, but I knew that there were things that I would need to do to make sure they always knew and never forgot how much I loved them.

I wondered, “Who will protect my children in the way I do? Who will remind them to trust themselves? To follow their dreams? To always be kind? To have balance? To love hard? To laugh often?”

My mind continued to trail, “If this is my last Christmas, then I want to make sure it's extra special.  I want the way they feel THIS Christmas to last the rest of their lives.”

“How can I create that when I feel like this?”

I place my hand on Lincoln’s back to make sure he’s breathing, a habit I haven’t been able to stop since he was born. As I do so all the core memories of the last 8 years of watching him grow up flood my heart, mind and soul.

“Lincoln, my sweet, sweet boy.  Your big eyes and infectious laugh and smile have had me hooked from the moment I laid eyes on you.  You were ALWAYS such an active baby, toddler and now child.  You love to be around others, especially kids. It has always been “time to make some new friends!”  You have such a vivid imagination, it's so much fun watching what story line you come up with. Your heart is GOLD, you are so empathetic and can read others well and help them through their emotions. Your passions are soccer, animals and friends….” 

Maya rustled around in her sleep and reached for my arm.

“She always needs my arm to fall asleep!” My mind switched to Maya. 

“How will she get to sleep if I’m dead?!” I wondered as tears dropped onto my bedsheets.

“Maya, my strong-willed, witty girl.  You have always been so ahead of the game in everything that you have done. From talking at 6 months to walking at 9!  Your quick comebacks and thought process have left us stunned daily.  You are such a nurturer, always caring for your babies.  You have elaborate story lines too and love to organize and set up your accessories and materials for hours.  Your ability to see through people and truth is so advanced.  It was so much fun baking together throughout the pandemic and recording videos for your ‘“Mixing with Maya channel.”

My mind raced to the future, to their future, one without me in it.  

Despite the fact that the very thought of me not being in their future, broke me, the possibility that it might be a reality hovered over me like a dark, swirling cloud.

In those dark, hellish moments, I wondered: 

“How will Lincoln use his leadership skills as an adult?  Will he become a teacher?  Will he rescue animals?” 

“Will Maya have enough time in the day to pursue all her passions?  Will she cut hair? Will she bake?  Will she be the first female President of the United States?”

I pictured Lincoln and Maya reaching all their milestones:  graduating, meeting the love of their life, purchasing their first home, getting married, having their first baby…

I pictured ALL of it, ALL of it without ME!

It was pure torture. 

I’ve always signed every letter that I have written to each child with the following saying from one of our favorite children’s book and author, Nancy Tillman, “Wherever you go, my love will find you” and add to it, “in this lifetime and the next, forever and ever”    

In those dark moments, I wondered, “Surely if I die, my love will follow Lincoln and Maya but how can I be certain they will always know and feel it????”

With my heart breaking and my mind racing with ideas, I got out of bed and headed downstairs by Tyler.

It was Tyler’s busy season and the deadline of January 13th was inching closer.  It was nothing for Tyler to stay up and work until 2, 3 or 4 in the morning.

As I got to his office downstairs, he could see I had been crying by eyes yet again. 

“Hey, what’s wrong?” Tyler asked in a knowing way.

“I can’t sleep.  You just keep working.  I’ll lay on the couch and watch shows until you are done.” I said sitting down on the couch and covering myself with a blanket.

Tyler joined me on the couch.  “I can be done for the night now.  Come on, you need your sleep.  Let’s go upstairs and go to bed.” 

You would think with all the crying I did throughout the day that I would have just collapsed from exhaustion, but I couldn’t turn the thoughts off in my head and apparently neither could Tyler.  

“What do we do about our Hawaii trip?” Tyler asked laying in bed.

Tyler and I had planned a trip to Hawaii with Lincoln and Maya and other family members to celebrate our 10th wedding anniversary in January.  

“Well, if the bone scan shows metastasis to my bones then I definitely want to go…” I start sobbing again uncontrollably.

“What if this is my last trip?  What if I don’t get to travel the world with you?” I manage to get out through my sobs.

The pure thought of not being able to take all the trips Tyler and I had been planning to take over the next 40 years was crushing.  

“All the memories and experiences I will miss out on with you!” I said to myself which only made me cry harder.

I then started to make a “To Do” list in my head of everything I need to make sure I do for my family before I die:

1. Make videos for the kids for each milestone to celebrate with them

2. Buy gifts for the first couple of birthdays to give to my family

3. Give away my clothes and items BEFORE I die so my family isn’t burdened with it after I am gone 

4. Write down all the accounts we have and usernames and passwords for Tyler

5. Make sure Tyler is on all our accounts and have payments deducted automatically 

Tyler interrupted my “To Do” list making and said. “Hey, we are going to take a lot more trips together.  We have to think positive.” 

“I hope so,” I said soberly, “it’s just this cancer has had so long to grow, I feel like there is a good chance it’s somewhere else.”

“F***. How is this happening?”  I wondered yet again. 

“I want to grow old with you.  I want to watch our babies grow old and follow their journeys.’” I pleaded desperately.

“You will, we will.” Tyler said pulling me closer.

“All I know is that if this cancer is ONLY in my breast and I get to live, then I am going to make it count.  I am going to truly live life.  I am going to do whatever I can so that another woman, another mother doesn’t have to experience what I am going through right now.  I am going to empower women to trust their bodies!” I proclaimed. 

“I know you will,” Tyler said. “I know you will.”  

We laid in bed for hours talking, crying and holding each other during those dark nights, unable to sleep.

It was in those dark, pitch black moments that I had to feel my way out.  

I had to feel EVERY emotion as it came, I had to feel it through.  

Tyler traveled right alongside me and validated EVERY thought and emotion, even if it was unpleasant. 

I am so appreciative that Tyler allowed me to experience and go through the extremes, it was an essential part of my processing and growth.  

From those dark nights I have learned, “in darkness, the only way out is through feeling…” 

I can see again.

Four years later…

Four years ago, I was living inside the darkest limbo of my life — waiting, terrified, unsure if cancer would be just a chapter… or the end of the book.

I remember making those promises in the quiet, pitch-black hours. Promises whispered not just to Tyler, or my children — but to the universe, and to my own soul.

I promised that if I got to live, I would not waste it.

I promised I would feel everything, not bypass it.

I promised I would advocate — loudly — so another woman wouldn’t have to scream into someone’s chest asking, “Why didn’t they listen to me?”

I promised I would trust my body, honor it, and help other women do the same.

I promised I would love my people fiercely and create memories that would outlive fear.

And most importantly —I promised I would make it count.

Four years later, I can say this with certainty:I have kept those promises.

I have lived through the after. I have sat with patients who are standing exactly where I once stood.I have used my voice — in treatment rooms, in policy spaces, in advocacy work — to create change that matters.I have chosen presence over panic, meaning over fear, and truth over silence.

And now… four years later…We are finally taking the trip cancer postponed. Hawaii.

The trip that once felt like it might be a goodbye.

The trip that lived on a “what if” list.

The trip I feared I might never take.

Now it feels like something else entirely:

A celebration.

A reclaiming.

A quiet, powerful reminder that life continued — and so did I.

Those nights taught me something I will never forget: In darkness, the only way out is through feeling.

And because I allowed myself to feel it all — the terror, the grief, the rage, the love — I continued living through life with eyes and heart wide open. ❤️