Tag Archives: pancreatic cancer

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.

Flowers and Food

Can you stop by on your way home from Bridgewater? I have something for you. If I don’t answer the door just come around back and find me.

The text went something like that.

I wanted to say no. No, I actually can’t.

It’s the truth.

That is where I was. Where I am right now. Angry at the world. At everything. Still having to function while anticipating grief. And just angry.

My mom is very sick. She is dying. I was not even aware of this on July 26, just two months ago. Now I don’t know if I will get two more months with her.

My rational side got the better of me, because this friend’s house was literally on the way home. Also, I know myself well enough to call my own bluff. Also, she loves me. She is so kind. I needed to receive the invitation of care.

So I stopped on the way home and found her in the extensive backyard flowerbed. She is the kind of gardener who can make an everyday bouquet from twenty varieties of things she has growing, naming each one.

She was still cutting and arranging as I wandered out back and then followed her into the house for the adding of water to the jar and sending of me on my way.

I am bringing you dinner next week. Is Wednesday or Thursday better?

Thursday was a no-brainer, since my husband was leaving for his annual guys’ weekend that day.

Thursday. Thank you.

We chatted briefly in the kitchen, a safe distance from each other, before I left to pick up a child from a friend’s house, in same the neighborhood, on the way home.

Tears filled my eyes.

I don’t know what I need on a good day, and lately the days are not so good. When the text came with several menu choices, I knew instantly the one. She agreed it was one of her best.

She cut me flowers and brought me food.

And that is what I needed.

And I am so grateful.

Thank you, AM, and all of you who have known just what I needed and left in on the porch or dropped it in the mail or sent it by text. You are the hands and feet of real Jesus and love. Thank you for your care during this unbearable hard.

Waning

Look at the moon!

Husband beckons me to look out the car window on our late-night drive home from a weekend wedding. I scroll my phone looking for music to play, or maybe escape, and glance skyward.

Is that really the moon?

An orange orb dances behind a mountain ridge, peeking out occasionally. I catch a glimpse before it disappears again. I have been known to mistake a Burger King sign for this wonder of nature and am unsure whether to get excited about the glow.

Then it appears in full glory. Hanging from the sky as if about to be dropped to earth, larger than life, Mars twinkling by its side, the deep-orange, waning gibbous moon.

waning: the act of decreasing gradually in size, strength, power, etc. . .

I oohhhhh and ahhhhh appropriately, for I love the moon in whatever phase it shows up, but this one is stunning. It is comforting and kind and sad. That seems to be the way I hold life these days, comfort and kindness in the sadness.

Date saved since January, this eagerly anticipated wedding comes with unlikely surprises. We witness outdoors with masks and eat charcuterie from individual plastic cups and drink lemonade as we wait for dinner. It feels a lifetime ago that I sat poolside drinking a margarita on a work trip with my husband that same month.

Steve and I sit around a table with the Big Boss (not to be confused with the immediate boss whose wedding it was) and co-workers and their wives. We talk and wait for our table to be called. I do well managing the small talk.

Until I don’t.

I lose my steady, and my brain goes offline just long enough to float away.

What?

It is Steve’s Big Boss who looks at me quizzically.

Shoot. I just did the thing I don’t mean to do but sometimes happens. My kids say What? Why are you looking at me like that? or Mom, you’re dissociating. depending on who notices when this happens at home.

It’s my How can I be here doing this when my mom is home dying and family is in town visitng? face, and it has just come out at the wrong time, and I panic and have to be real.

I’m sorry.

I explain, and everyone is gracious and kind, and I am just sad. How can I rejoice and grieve simultaneously? This is my lesson in this season. The both, and.

Usually I keep the right feeling in the right place, but tonight sadness dumps out and lands in the middle of joy and the eyes that bear witness to the beginning of new life together hold me as ! grieve the end of another.

And the moon shines down on us all.

Waning.

Mom’s Fall Planter

I decide to welcome fall early this year. It’s still August when I commit.

I know that’s not the official start, but something about knowing, really knowing, that you have months, not years, left with someone, makes every moment count.

We know that, right? That all of the moments count? Turn towards those you love while you can. It’s a great theory, but the practice of it, in blog-friendly language, is oh my.

Really tough.

Because life. And death. And all of that in-between. And not all of us get to know ahead of time.

And what are months, anyway? Twelve of them make up a year. That leads to twenty-four, which is two years, and so on. Not without hope, and yet, there is also reality.

So last Friday, as Mom and Dad visited the oncologist, my sister and I ran afternoon errands together. Something about a perceived sense of normalcy and control made this an adventure filled with hilarity and comic relief.

We are good at comic relief. Also irreverent hilarity.

After all of the musts, I chose a want and decided to get fall plants for mom’s outdoor planter.

Each Mother’s Day I plant one of the large planters in front of my parents’ house for Mom, and on Father’s Day I plant the other for Dad. This year was different on Mother’s Day, due, in part to the pandemic and its limitations.

Instead of selecting individual plants, I chose a hanging basket from the local food coop, planning to empty it into the planter, ready made style. When Mom saw what I was doing, she preferred to keep it as a hanging basket, so up on the porch it went.

Her planter remained sparsely populated with perennial growth from previous years, a rosemary bush, lambs ears, purple salvia, and a lone geranium, added by me to fill an obvious gap. These continued growing all summer but never fully got it together.

I tried looking back in my phone to see if I had a picture of that planter, and just the act of scrolling backwards to May brought a heaviness to my chest and tears to my eyes. We can’t go back to before.

I decided to seize my (and mom’s) favorite season and plant for fall to welcome her home from her long day of medical appointments.

And that’s what I did.

Happy Fall, Y’all! Let’s make this one count!