Tag Archives: pancreatic cancer

Ordering My Thoughts

Write.

Just do the thing for the time. Get the words from your head, through your fingers, and out there.

I’ve been awake for what feels like hours with all the thoughts. I’ve done the breaths and prayers and gotten out of bed to peer through the blinds at the street, checking that all cars are home and accounted for.

Lying in bed, words flood my head, press my chest, spill through my eyes. I know when I won’t return to sleep, and it’s now.

I ease out of bed and into my robe. Drinking the remaining water in my glass, I exit to the kitchen.

Last night’s late-night mess greets me, and I begin cleaning up. Only as long as it takes to heat water for my hot morning drink I tell myself, rejoicing when I open the dishwasher to dirty dishes that don’t need to be put away just yet.

I fill the empty spots with glassware, silverware, random plates. I add a detergent pack and set it to run.

I grind coffee beans, dumping used ones into the compost tub on the counter, and fill the coffeemaker with water. It’s ready to press start in a few hours.

Turning the burner under the kettle, I notice a grease-splattered surface and stovetop in need of cleaning. I resist my urge to fill the sink with soapy water, a mark of growth for my Enneagram 9 self who does all the right tasks at the wrong times.

Yes, it’s a job that needs to be done, but not now when I am supposed to be writing. I don’t have to do it early Sunday morning.

I spoon the citrus-ginger-honey mixture into a mug, adding lemon juice, apple cider vinegar, and several shakes of cayenne pepper. The kettle rattles and begins to whistle. I lift the hot handle with a kitchen towel and carry it to pour over and stir everything together.

Walking upstairs, mug in hand, I make a final stop in the laundry room to start a load of laundry that has been soaking before settling on the small couch in my tiny home office to (finally) write.

Tomorrow marks 4 months since Mom died. July brings us to the final days of before.

I still feel fragmented. I begin looking for the pieces that shattered with the news, It’s not good, and were left for me to collect sometime later. Over the course of this descent into darkness, I took notes, telling myself I would order them later, but life keeps rolling on and doesn’t wait for you to do it perfectly.

This month I told myself, I will write. I will coax words and memories and try to wed them. Thank you for your patience with me on the journey of ordering my thoughts and finding my words.

Better Days Ahead

It has been 23 days since Mom passed, left us, died.

There is no way to say it that sounds acceptable or normal or kind. She is gone, and her absence is felt. Her big presence lasted all the way to the end.

I miss her.

It has been 15 days since we put Mom in the ground. That was harder for me than being with her when she breathed her last. So much remains to process about funeral weekend, about the past eight months. There is time.

That time is not today.

It’s good to have you here, my husband says to me last Saturday. I don’t notice it is the first weekend I have been around my own house for weeks, but he does.

My presence is missed when I am away.

It’s good to be home.

I look up at a sticker on one of the geometric cork shapes above my home office desk. It is wedged behind a succulent push-pin, carefully held up without peeling off the backing or making a hole in it.

It is the one I offered to my daughter when she asked if I had any stickers she could put on her new laptop. Mom! I gave you that!

She did. She gave it to me at Christmas, and I anchored it up onto my bulletin board, not really believing it and not ready to stick it anywhere.

Today I take it down and peel off the backing, ready to commit. I don’t know exactly what they look like, but I believe.

Strange, Surreal Space

It’s the weird in-between, the now and not-yet. It’s a familiar space, one inhabited daily over these past 32 weeks.

This journey of losing Mom started with the fateful text Can you come over? It’s not good. and ended with a sigh, because that is what life is. A breath.

So brief.

I sit in a strange, surreal space, waiting for the weekend events that will honor Mom’s life before laying her to rest. In a way it feels no different than the weeks and months before, except that there is not a need for me to be present with care.

I am back home in my own space. Caring, once again, for my people. I spent the afternoon working on a poetry project with my seventh grader. The dedication page read, To Grandma Kozel who loved birds and cats. It was followed by five poems of various styles written about our pets. It included pictures.

It felt normal to be helping a child with schoolwork.

Nothing has been normal since July 27.

I was away from home for 16 nights in February. It was The longest, shortest month, according to one of my siblings. When hospice gave Mom two weeks and said February was likely the month she would go, I imagine she thought, Wanna bet?

In a way she left us in February. Her mind slipped away, playfully, at first, then brutally. Her body fought to hang on. We just loved her and stayed close. I held loosely the idea of being with her at the end. Each day we wondered Is this it?

Life went on, yet it froze.

Days, again, rolled into weeks and into another month.

March came.

Out-of-town siblings returned home as a new week began. One sister had been here a month, another several weeks, my local and out-of town brothers also were here for weeks. My local brother, his wife, and I, resumed supportive care, taking shifts and days.

Thursday was my usual coffee day with Mom and Dad, and Dad and I sat with Mom in their room talking, remembering, drinking coffee. The day moved on, I stayed close reading and writing a little. I took a client call upstairs, as always, wondering if Mom would still be here when I returned downstairs.

She was still here.

Dad and I ate dinner together, and the evening hours began. My sister FaceTimed Mom and played and sang an hour’s worth of music, a set list from the many visits. There was always music, and Mom wanted to be sung home. My husband stopped in for a visit and sat with us.

I decided to spend the night. Ever-flexible, Steve agreed it was a good idea. He left to go home, and my brother and I fixed bowls of ice cream and sat in the living room watching tv.

Heading up to my room, I asked my brother to get me if he needed help or if Mom passed in the night. I went to bed.

When I woke it was 7:00. Medicine time. I went downstairs to help Dad with the morning routine. My brother was fast asleep on the couch. I was glad to be there to listen to morning prayers and watch Dad play a video from my aunt and just to sit and be close.

My youngest sister video-called with a new song she had written. She sang it for Mom and told her all about trying to learn how to go live on FaceBook. We hung up and my brother, his wife, Dad, and I sat around Mom’s bed watching and listening.

I picked up my phone at 9:10 and noticed that my sister had gone live at 9:00. Thinking she had sung her new song, I said, Mom, Stephanie went Live! Let’s see if she figured it out.

I played the video, holding the phone so Mom could see as Stephanie began to talk about her day and her season and one of the songs that marked this time. She played The Scientist by Coldplay, one of the songs on our set list that we enjoy singing together.

As she sang and played, I noticed Mom starting to leave us. Something shifted in her and in the room. When the video was over and I turned off my phone, Mom slipped away from us and was gone.

And I was with her, along with Dad, Nick, and Deanna. And Stephanie sang her home.

Making Room to Live

Siblings gather over the Christmas holiday. I stay at my parents’ house with sisters who have come from out-of-town, pretending that I, too, am an out-of-town sister. It is a sacred time of togetherness, one we will never get back in the same way, again.

Mom pulls each of her children aside to pass the jewelry she has selected for them. Her jewels and gems are thoughtfully divided. Costume jewelry is left to be sorted through, pieces that are meaningful selected by those who care to have them.

Daughters help sort through purses and drawers, clipping hair barrettes to their hair and stringing necklaces around their necks. Each day is a grand day to play dress-up. I wonder if Mom notices I am wearing something from her closet.

She notices.

I apologize for not asking first. It is understood that there is no need to apologize. We have Mom’s undivided attention, and she laughs and plays with us, and it is so bittersweet.

We bring papers and objects and articles of clothing to her, and she tells us what to do with them. The sorting, organizing, and purging is a collective effort. We notice and name how each of is both similar to and different from Mom and Dad. We bless and honor our unique blends of each.

It is mostly a giant Memory game ~ putting like with like, moving things around, asking questions. Remembering.

We write down pearls of wisdom Mom speaks and remind her it is not time for her to leave us until she has done the very last thing on the list. We laugh deeply and cry until no more tears come and love fiercely. This good woman, our mother, our human mother lives each day with us to the fullest.

We sing, voices blending as only sibling voices do, and Mom notes the depth, richness, and beauty of our sound. Your voices are growing stronger.

The week goes too fast, precious time never to return, and from the depths of my soul I am grateful for a mom who, even as she is dying, is making room to live.

What I Need

Black coffee sits to my left, bitter as the bitterness I feel in this season. My mother, weary, not herself, steadily declines as we watch.

How did this happen? Her days running out. Sands slipping faster through the glass. Dying as we continue to live.

Can I help?

I text this question to my sister-in-law one morning before another wave of family arrives and immediately receive an affirmative response and a list.

I try to learn from this.

What do you need is met with a busy signal in my head. I don’t know what I need.

What do I need?

I need my mom to not have cancer. I need big space that I don’t have. I need time, energy, and loads upon loads of grace.

I need to peel back all the extraneous and dive down to the core and then stay there with no expectations.

I need coffee, black and bitter, the drink I have shared with Mom from the beginning.

I need showers, hot and long. Time to meditate as the water pounds my skin.

I need to show up as I am and be seen and heard and understood.

I need engagement and rest and energy and breaks and a house that stays clean and litter pans that sift.

I need to love and teach my kids and care well for them.

I need to cry, wail, grieve, write, teach, cook, clean, work, rest, laugh, talk, sit, stand.

I need understanding that I’m not really sure what I need.

Winning 2020

We win 2020. It brings a horrific diagnosis, but it does not take Mom from us.

Not wanting to miss a moment with her or my siblings who are all coming in from out of town, I clear my calendar to be an out of town kid with my sisters for the last week of 2020. We stay in our parents home together, gathering gradually until there are four of us.

The week is full of reframing stories, having positive corrective experiences, processing embodied trauma, and decluttering Mom’s things with her.

We joke that she has created a giant Memory game for us to play as we find the bottom of a cute little decorative box with her jewelry and its lid in a dresser drawer in the guest room. We help her sort and put like things together and get rid of what no longer serves.

We do her nails, she passes out jewelry, we wear her clothes, we put on fashion shows. We laugh and cry and stay up late working on puzzles. We sing and do skits and welcome her brother, our Uncle Roy, who comes to visit.

We don’t want to miss a moment. We don’t know how many more we have.

Childhood floods over me like a tidal wave. Long-forgotten feelings surface as the sisters stay up late into the night remembering together. I wake sobbing in the wee hours one morning, and a sister crawls out of her bed and onto my air mattress. She holds and soothes me while decades of tears and pain release from my body.

We gather for family meals at my brother’s house. His wife loves us all well with her hospitality. A friend prepares chicken barbecue and buys chicken salad and croissants for us. We do countless puzzles.

We rearrange furniture and rooms and claim mementoes. Mom sits with each of her children one by one and gives them treasures she has chosen to pass on to them. The grandkids who visit pour over the jewelry tray, choosing something that reminds them of her.

My eyes land on a pair of earrings that immediately brings tears, then sobs, and I add them to my pile to be curious about later.

Days begin with coffee and soft-boiled eggs on toast, which I learn how to prepare in the special waterless cooking pan. They end with gathering around the puzzle table or the keyboard or a bit of both. There is much singing and laughter and copious tears.

And we end 2020 with Mom still here.

The clock strikes midnight on December 31, and I sing the Doxology standing between my mom and uncle. This is a family New Year’s Eve tradition. Mom joins us. Our eyes fill with tears. We hold every moment holy, glad to still be together to sing.

January 1 arrives and no Word of the Year post publishes, though I have a phrase chosen. I plan to write more soon, but for now I am taking time to live in the moment and savor the time and cry over goodbyes with my siblings as we anticipate the hardest goodbye to come.

Happy New Year, Friends!

Watching and Waiting Days

The watching and waiting days of Advent lead to the longest night ~ one where Mom’s sister is here visiting her. I walk across town to visit with them and feel my young heart remember.

These waiting days bring more Thursday mornings with Mom and Dad ~ more working on puzzles and drinking coffee than sharing stories. They bring the gifting of Mom’s teenage charm bracelet to me one week. They bring abundant laughter and copious tears.

I don’t want you to leave.

More moments happen with me, head on Mom’s shoulder, arm linked through hers, hands clasped, fingers entwined, sobbing. All the times my little girl, teenage girl, adult young woman, midlife woman, older woman self wanted, wants, will want her mom come flooding over and out and around us in heaving sobs.

We won Christmas.

Christmas Eve is a Thursday. I sit with my parents at the dining room table. We finish the birthday kitten puzzle, eight kitten faces, eight pairs of kitten eyes popping out of gift boxes with balloons and streamers surrounding them. The missing green piece is found under the table.

We thought it was missing!

We are all getting really good at puzzles.

I plan to leave at 10:00 to shop downtown. Mom and Dad ask to join me, so we make an outing of it. Driving to the Water Street parking deck in the rain, I sit in the back seat of the Odyssey ~ the only child riding behind her parents.

It’s a positive-corrective team-building experience as I carry the umbrella, holding it above all of us to shield from the rain. I joke that I can now check make a Christmas memory with Mom and Dad off of my bucket list.

Agora Market is the perfect choice. There is a coffee shop where Mom and Dad order a latte and chai. A former preschool student recognizes them and says hello. I walk away as they talk, my eyes, the only part of my face showing, filling and spilling over with tears. The 90’s feel like an eyeblink ago.

Mom and I agree that she will select gifts for Dad, and I will take them discreetly to the counter. The cashier stows them to the side until all are gathered. I pay for them at the end.

She sees a black dress hanging. She knows it will be perfect because of the way it falls when she fans out the fabric of the skirt. I think of Jerry Seinfeld’s sketch on the difference between men and women when trying on clothes.

She also grabs a cozy sweater and chunky earrings. All are so beautiful and so her.

We return home, and I help Mom wrap gifts. She tries on her new outfit, and I leave to run some errands alone.

The smell of bacon fills the house when I return. Mom and Dad putter side by side fixing BLT’s for lunch. Mom wears a vintage apron sewn by her mother, my grandmother, years ago. My grandmother still lives with her husband in Michigan.

I won’t know what it is like to lose my mom.

My mom says this to me during a conversation. She won’t know loss. Not like this.

I can’t think too hard on that now. The pain runs deep. She and her mother are all I know of a mother ~ daughter relationship in the future. We were working hard on ours.

I thought I had at least 20 more years with her.

I hope I get 20 more days.

Mom peels and cuts a large naval orange into chunks, filling a bowl with them. She opens and pours out a small bag of Rt. 11 chips into another ~ not the Yukon Gold ones of early to mid fall ~ but regular.

I pour glasses of milk and Dad pours a Yuengling, and we all sit down. Just three of us. A Christmas record plays on a new record player that stands on the vintage record cabinet that Deanna and I helped Dad find the Saturday before.

Mom’s Christmas gift.

December was a month of gifts for Mom. We started Hallmark movies in October. That’s when the red Hallmark Christmas Movie watching blanket and the Merry pillow arrived.

It’s a delicious lunch followed by a rest for Mom and shopping trip to the co-op for Dad and me. We buy groceries and a few stocking stuffers.

Returning home, Dad disappears to his third-floor hideaway. Mom and I hunker to rest and watch a movie. This slow day ends with Steve picking me up for re-entry into my local life. I walk downstairs from the third floor with Dad to find Steve sipping coffee on the couch across from Mom ~ coffee she helped make for him.

We say our goodbyes and exit the front door. Stepping onto the porch, surrounded by the brightness of the colored LED lights and the darkness of a December evening, my heart relaxes and releases all it has held and pondered this day, and the tears begin to fall.

Being the Daughter

I know that my mom is the center of her own story. The star of her own show. Dying of pancreatic cancer is traumatic. Bearing the pain, the news, the treatments. I cannot imagine the grief and loss that comes with facing the end in that way. Her story is not mine to tell.

And yet . . .

Being the daughter is difficult, too. There is a strange supporting role that overlaps. I have my own story of grief and loss in the midst of watching my mom live out her days. I am losing my mom, my hopes and dreams with her, my emergency contact person for my kids in school.

In early July when I filled out school registration forms for my three high school kids, it was so easy, because everything was the same. In August when I registered the fourth in a new space and automatically began typing my mom’s information in as an emergency contact person, I froze with the reality of the news we had been given and broke into gut-wrenching sobs before texting my sister-in-law to ask if I could use her instead. I did not even want to consider what the end of the school year might look like or where we would be.

I sit awake in the middle of the night, the time when grief barrels down like a freight train, because that is when the house is still and quiet and no one needs me. I carry my quilt and hot tea to the tiny office upstairs and sit.

One day I will have home office space big enough to hold a couch or recliner or something more comfortable than a chair and makeshift tiny ottoman. I am thankful for what I have now, space just for me and Pierre the bird, whose cage I have resumed covering again so my middle-of-night visits don’t disrupt him..

On a good night I meditate or journal or read to quiet my mind before returning to bed. Then there are the nights I spend searching my phone, scrolling for stories, for connection, for others who may be feeling similar grief. Those nights I know I should just put down the phone. It’s not good for my sleep cycle to be staring at the light.

It’s also not good for my sleep cycle to have a mom that is dying.

We won another month.

Hello, November! You bring us a new start.

I deeply hoped we would, even though the beginning of October felt tenuous enough for me to cancel a trip, even as mom planned one of her own. She travelled, saw her people. I stayed home, sat in hard places, and fed her cats. I started a new client and engaged my own grief.

l listened as my body bore witness to my story, kept showing up for my coaching group, checked on Mom when she returned, gave big space when I couldn’t.

I want to know how this ends, but I don’t want it to end. I want a place to fall, land, be held without feeling both complicit and responsible. I want absolution. Kindness. Care. I want to watch all of the amazing things everyone else is doing with their lives and families while believing that my grieving is enough for right now.

I am both a daughter losing her mother and a mother of many who need to be actively mothered. This is not easy. There is a little girl inside who just wants to be able to cry, release, speak the truth of where I am without being blamed or fixed. We all need so much of each other. We are all so alone.

Being the daughter means having young places inside stirred by this reality, places that desire deep freedom to be who I am and generous love and acceptance. Big kindness. I want to be seen, known, loved, understood, tended. Being the daughter means sitting in the shadows watching the stars of this show play out their scenes together.

The shadows feel familiar.

I am so grateful for each of you who has seen me and reached out in the ways you felt led. From cards in the mail to bread and butter left in brown paper packages on the porch to invitations for walks to understanding that my absence or silence is not personal, it all matters.

Even unspoken thoughts matter when you are the daughter losing her words in the midst of this nightmarish loss.

Hindsight 2020

Unicorn bath bomb swirls colors into steaming water. I watch, mesmerized, massaging coconut oil into my hair, a makeshift mask. I bless each dark strand that comes out in my hands. Its replacement will most likely be the color of wisdom.

Hindsight 2020 playlist fills the room with music. All the songs I didn’t know I needed this year, compiled into one list, inspired by Bethany Cabell’s annual Thanksgiving Playlist on Red Tent Living. I always choose random, not chronological, order when I listen.

Chili simmers in a crock pot on the kitchen counter. Just thinking of it’s recipe source, crock pot owner, and preparer brings tears. Such kindness surrounds me. Deep care.

I climb into hot, scented, sparkly unicorn water, letting tears fall. When a heart breaks brings sobs from a heart that has been broken for longer than I care to admit.

I have never been alone in this. Never not loved. Each song reminds me. Each link-sender seeing me in a vulnerable posture of heartache.

And yet an small place inside, a small person, just wants to be held. To not hold everything. To not be responsible for all of the intensity and pain in everyone else.

I see her. Feel her. Invite her to rest in the embrace of water and sparkles and love. I breathe in sweetness and spices and exhale grief. I hold her and let her be held.

Weeks to (New) Months

October 1 finds me reflective and with a deeper understanding of what the phrase weeks to months actually means. When Mom began chemo the first week of September, it was to give more months, not years, according to the oncologist.

Chemo was brutal. One round caused such misery that to continue for a few more months of torture to extend days was not sustainable. Mom chose hospice care instead, allowing her to live more fully and with more presence in this season.

Mom looks beautiful in her brightly colored turbans!

Eight weeks and three days since the initial heartbreaking scan, life settles into a routine of change. Each week grows day by day, then adds up with the next to create another month. And that is what we are given, a string of days, weeks, months.

We won September, full of family visits, kids settling in to school, and shifts in business and work loads. We practice turning towards each other. There was a photo shoot to capture us with Mom.

Mom and I share a moment during the photo shoot before our own mini-session. She is always radiant in red.

October brings new rhythms and boundaried settledness. Time and energy are precious resources. The walks across town, to and from my parents’ house, a sort of sacred rhythm, ground me in presence as I transition from mother to daughter and back again.

Sighting a heart shape on the brick walkway or a changing leaf from a nearby tree bring comfort and calm to the sometimes-chaos of my heart.

A heart-shaped blob on the sidewalk reminds me that love is all around me. I only have to keep my eyes open for it.
Change is the constant.

I drink coffee outside with Mom this morning, our usual Thursday routine. We enjoy the crisp air and birdsongs and sighting of a butterfly on the fence. Mostly we enjoy the rhythm and ritual and the gift of a new month.

Look closely to see birds on top of the fence and a butterfly resting, as well.
Mom wearing the prayer shawl made for her by a dear friend, Rosie.

These are the moments that matter in the weeks to months that remain. Thank you to all who continue to offer such gentle care, kindness, and understanding as we navigate the present while looking ahead to the uncertain future.