The Sound That Saved Us All

Chapter 41: The Sound That Saved Us All

What does grace sound like? This was the question bouncing around in my head as we sang this song.

The tinkling of little bells

A baby laughing

The gentle wind moving through the fall leaves

My kid’s voice telling me about his day

The quiet whish of the sliding hospital door as we walk out, leaving it behind us, at least for a while

The voice on the message from the friend I need to call

The ding of the text telling me mom is feeling better

The pad of feet as husband walks to bed in the dark

The coffee pot brewing that first cup of coffee

The little kids shrieking in laughter and cheers as they jump into the pool at the end of another swim season

The ambulance siren down the street hopefully saving a life

The jingle of dog tags as they chase each other around the dining room table

That returned phone call answering the last question that allows me to finish the project

The kid cracking himself up as he skypes with his friends

The quiet after the hurricane has passed and we sit with no power

That one guitar chord that brings a lump to my throat every time I hear it

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Happy Birthday, Lillian!

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Chapter 40: Happy Birthday, Lillian!

Lillian turned 92 today and I was lucky enough to spend a few hours with her. She is a member of our half-day program at a local church. You may recall that I work for a nonprofit that provides day programs for aging adults with chronic diseases – mostly Alzheimer’s or similar dementia. Music from the 1940s and 1950s was playing as the members arrived, usually with their caregiver who is a spouse or adult child. Everyone says hello, gets settled, and has a snack. I was so touched when I watched each caregiver helped their loved one get comfortable and slowly greet each of the members personally.

Lillian was one of the last to arrive today, and we had the throne and crown waiting for her. Even the Happy Birthday welcome sign was ready! She arrived and we got her settled and took pictures. She has white hair, a beautiful smile and was dressed to the nines. I think she knew it was her birthday but I can’t be sure. Daily awareness can vary amongst the members and can even vary from moment to moment! As we passed the birthday card around for everyone to sign (Brenda, another member, is in charge of the cards), Dotty said, “Who is Lillian? I don’t know her!” – even though they spend several days a week together – so I pointed over to Lillian and Dotty had a brief moment of recognition and signed the card.

Usually each day begins with news headlines and puzzles like word search or connect-the-dots, but today we began with a “We Love Lillian” activity. Each member had a chance to share what they loved most about Lillian.

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Humble
She’s honest
She’s a sweetheart
She looks 13 years old
She’s very nice, I like her, and she’s my friend*
She has a beautiful smile
Kisses
She’s Winnie the Pooh, she likes honey
She is 

*Darlene also said, “Lillian was the first person who welcomed me here! She’s been my friend since the beginning.”

After snack and the Lillian game, we played a game of bingo. Thankfully these were the large print bingo cards, because I need them just like the members do! We used poker chips to cover our bingo numbers when they were called (poker chips in a Baptist church – don’t tell!) and eventually most everyone had BINGO before we finished filling the cards. Seriously, who doesn’t like bingo?

The director of this program is an amazing woman named Louise. She is an artist and was formerly a preschool director for many years. The parallels between working with preschoolers and seniors are remarkable. One needs patience, flexibility, the ability to offer guidance but not “do” for the student/member, and certainly a sense of humor. Louise has all of these and more. She is supported by two volunteers each day, and these women and men are also gifted, lovely people. It’s a joy to spend time there and learn from the best!

I had to leave before lunch but what a treat it was to start my day this way. Of course it prompts me to reflect on my life and career. As a mom, I know what it’s like to parent/guide preschoolers, children and teens (at least I have a slight clue on this last category). And in my last job I was working with adults with developmental disabilities, so I learned how to be patient and listen as those friends communicated and explored their daily routines. And now the gift of working with aging adults! I truly feel as though my life experience to this point brought me to this place. It’s a sobering and exciting realization to see how your past experience has prepared you for the current one. Aren’t we lucky to allow each chapter of our lives to teach us and prepare us for the next step?

When I left the program and I popped in to early voting before heading into the office. I hope the candidates who got my vote are ready and willing to serve the least among us — the children, the disabled and the aging adults, and all of us in between. I like to believe they are. I hope and pray they are. It would be lovely to reach 92 like Lillian has.

 

Note: Names have been changed to protect confidentiality.

49 by the numbers…

Chapter 39:

49 by the numbers…

4 states

In daylights, in sunsets

9 cities

In midnights, in cups of coffee

2 sisters

In inches, in miles

2 parents

In laughter, in strife

1 starter-marriage

Journeys to plan

1 real marriage

In truths that she learned

1 FIL, 1 MIL, 4 BIL, 2 SIL

Or in times that he cried

2 kids

In bridges he burned

18 jobs

Or the way that she died

6 dogs

It’s time now to sing out

2,548 weeks

Tho’ the story never ends

17,885 sunsets

Let’s celebrate

53,655 meals

Remember a year in the life of friends

25,754,400 minutes

How do you measure a year in the life

9,723,600 minutes happily married

How about love?

8,672,400 minutes as a mom

Measure in love

2,060,352,000 heartbeats

Seasons of love … Happy birthday to me!

Did you know?

Chapter 38: Did you know?

It’s been a busy couple of weeks in neuroendocrine cancerland. We lost a supremely Arethatalented American with the passing of Aretha Franklin. And did you know that she succumbed to pancreatic neuroendocrine tumors aka pNETs? You can read the blog post from the American Cancer Society and from Aretha’s physician and the Healing NET Foundation if you’d like more info. While we hate losing anyone to this disease, it’s nice to see some accurate press about it. There have still been plenty of erroneous reports of pancreatic cancer, but all-in-all more accurate press this time. One of the biggest challenges of NETs cancer is folks being misdiagnosed for years, ultimately inciting more confusion about this uncommon cancer. There was a beautiful (and long) service celebrating Aretha’s life and talent just yesterday. It’s never easy seeing a light like hers go out. I know I am thankful for the gifts that she shared with us! RESPECT!

Speaking of loss, we also lost Senator John McCain this week. He gave us an amazing example of courage and generosity of spirit which I believe made an impact on our world. I probably did not agree with him on many political issues, but I definitely admired him for his service to America. He leaves a big hole in our political landscape, that is for sure. More respect!

I’m finally reading Kate Bowler’s Everything Happens for a Reason (and Other Lies I’ve Loved) and it is blowing me away. She writes, “We are all floating on the ocean, holding on to our own innertubes. We’re all floating around, but people don’t seem to know that we’re all sinking. Some faster than others, but we’re all sinking.” I know this is true and I realize that most don’t really want to think about it or talk about it. But for me this has been the big lesson of our family’s journey roller coaster ride with neuroendocrine cancer. Right now we are floating along without any major holes in our tube, although obviously we are slowly sinking right along with everyone else. Fingers crossed that it will be awhile before we have to deal with too much water leaking in.

I hope you are floating into fall without too much sinking. Nice to know we are floating together, don’t you think?

Note: If this sounds vaguely familiar, I mentioned Kate before in this blog post from Feb. 2018.

 

 

 

So we went on a cruise…

Chapter 37: So we went on a cruise…

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Balcony view

I wasn’t sure if I would love it or hate it, but it turns out that cruising is pretty great! The four of us took our very first cruise last week and we loved it! Four days in the Bahamas (aka “entry-level cruise”) was perfect. We stayed in a suite which had a balcony with endless views of the ocean.

 

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Atlantis

Our first port excursion was to Atlantis. Wow. That place is HUGE! Don and I spent most of our time on the mile-long Rapid River while the boys tried all of the big slides. The grounds and hotels are beautiful. We would love to visit there again someday!

Our second port excursion was supposed to be snorkeling trip, but it was cancelled due to winds and high waves. Bummer. So we opted to spend the day on a beautiful little island. The island was lovely but the

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Beautiful island & beach, but don’t get in the water!

“swimming and snorkeling” beach was disappointing! The ocean floor was covered in sharp and painful shells and rocks so while they tried, Don and boys did not stay out in the water very long. Next time we’ll know to come prepared with water shoes!

This trip was a splurge for us, but we were celebrating a year of good health! Last summer our vacation was spent at Duke Medical Center while Don underwent and recovered from his surgery. One of the biggest lessons of cancer is to cherish the time you have with your loved ones since we have no guarantees for tomorrow. Really, this is a gift, not just a lesson.

We are happy to see that NETs cancer got some national press on the Megyn Kelly TODAY show this week. Gil Schaenzle is an amazing woman that we had the chance to meet a few months ago at a regional NETs gathering. She is doing all she can to raise awareness of NETs cancer in memory of her daughter, Anna, who succumbed to the disease in 2017. Watch this video to learn more. We remain overwhelmingly grateful that Don somehow pulled the lucky straw and has the non-aggressive version of NETs. He will most likely live for a few more decades with more good days than bad.

So if you haven’t already, hug your loved ones today. Take a few days and head to a change of scenery with your favorite humans. The beach, the mountains and the National Parks are waiting for you. Today is our only guarantee.

 

How are you feeling?

Chapter 36: How are you feeling?

It seems this month’s Life Lesson is about quality of life and feeling good.

I recently started a new job with a local non-profit in the aging services industry. I am responsible for building and expanding the fundraising efforts that help cover the costs of providing day services to older adults. As a middle-aged woman with older parents who might eventually need these kind of services, I am watching and learning with keen interest during my orientation. Guess what? We cannot stop the aging process! Who knew? Therefore, when it comes to providing services for older adults, the key factor is doing so with dignity and respect — so their quality of life can remain good, and so they can feel good. And so that their caregiver can get some respite, knowing their loved one is being well cared for during the day.

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Thanks, Google. A snapshot from an adult day center, in another state, not where I work, because confidentiality. 

Do you know where else I have heard this lately? Earlier this month when Don and I were able to hear one of the leading NETs doctors speak. One of his main points was knowing how to treat the disease so that patients had a good quality of life and are feeling well. The cancer may be incurable but the treatment can still give patients a longer and a healthier quality of life. Dr. Liu’s key question is “how are you feeling?” which guides his approach to next steps of treatment.

This is so wise! How am I feeling today? Will eating that cheeseburger and fries make me feel good? Will putting off that dreaded phone call make me feel better or worse? What next steps should I take so that I am feeling well – both physically and mentally? In our 100 mph American life we are usually so distracted and stressed that we lose sight of making the choices that will ultimately help us feel better. Today I caught on to this month’s Life Lesson.

Our roller coaster ride with neuroendocrine cancer has also taken a nice turn. Don got a great report this month. His disease is stable – no new lesions and the existing lesions have had no notable growth in 6 months. We are grateful for knowledgeable and experienced physicians who know how to treat this disease and care for their patients with dignity and respect.

What helps you feel better and enhances your quality of life? Please comment below to tell me what comes to mind. I would love to learn from you and hear your thoughts.

 

Chapter 35: A Dazzle of Zebras

Did you know a group of zebras is called a DAZZLE? Yesterday we had the chance to hear the #1 US expert on neuroendocrine cancer. Dr. Eric Liu practices in Denver, CO but was speaking in Raleigh last night so we didn’t want to miss it! Fifty or so people (about 25 zebras + guests) were crammed into a dining room at a Hampton Inn in Raleigh. You may recall that NETs patients call themselves zebras because NETs is such a unique cancer (“when you hear hoof beats you think of horses, but maybe it’s not?”)*. Did you know that there are about 80 different types of neuroendocrine cancers? Wow. Dr. Liu said there were probably 200,000 NETs patients in the US. If you consider that there are expected to be over 330,000 breast cancer diagnoses just this year, it gives perspective on how unusual NETs is.

Last night was quite a gathering. Dr. Liu spoke about his medical journey that led him along the path to become the foremost NETs expert in the U.S. In addition to being a brilliant physician and surgical oncologist, he is also a caring and funny human – we liked him immediately. Then we heard from Gil Schaenzle, who lost her daughter Anna in 2017 to one of the more aggressive forms of NETs. Gil is now walking all of the US National Parks in memory of Anna, to raise awareness of NETs cancer and raise money for the Healing NET Foundation. Finally, after dinner, Dr. Liu spoke about the latest treatments and upcoming research for NETs, as well as answered questions from the crowd. It was hugely informative and comforting to be with a group of people from around NC (and a few from TN and VA) that were also dealing with this disease. Don was the “youngest” zebra there (diagnosed only about a year ago) and the “oldest” was someone who has been living with NETs for 12 years. These people were all ages, all genders, all races … all living with this strange and mysterious cancer. Talk about dazzle!

Don’s surgery was a year ago, on June 14, 2017. You can read about it here. He still sees his local oncologist, Dr. F, for the monthly sandostatin shots and sees Dr. M, the NETs specialist at Duke, quarterly for a scan and visit. This could change from quarterly to every 6 months – TBD. We are both joyful and grateful that the year has flown by and Don is feeling good. We expect this to continue for many  years.

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Gil S, Dr. Liu and a friend

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A dazzle of zebras

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Dazzling hydrangeas from our yard, representing our joy and gratitude.

 

Sources:
* A “hoofbeats” example – Don’s NETs appeared as tumors on his liver. At first glance, one might think it was liver cancer, but it was not. It was neuroendocrine tumors on his liver, which originated from his small bowel. This is just one of the 80 different types of NETs.
* http://www.breastcancer.org/symptoms/understand_bc/statistics
* To learn more, check out these Ten Facts on NET.

 

Chapter 34: Facing the hard stuff

Lucy: Wouldn’t saying goodbye to your child make death more painful?
Paul: Wouldn’t it be great if it did?

Lucy and I both felt that life wasn’t about avoiding suffering. Years ago it occurred to me that Darwin and Neitche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. …. We decided to have a child. We would carry on living, instead of dying.

After 13 grueling months of pain, treatment, and lots of love from her family and friends my friend Elizabeth in Florida took rest from her bile duct cancer journey on March 11, 2018. We were high school friends and had reconnected on facebook in 2010. Yes, you are right, no one should die at 48 years of age. Her amazing husband and two beautiful daughters are somehow learning to survive without their beloved wife/mom.

My friend Liz, here in NC, passed away on April 11, 2018 after a 6-year journey with metastatic breast cancer. One of my favorite memories with Liz was when the two of us went to the Lilith Fair in Raleigh. Sadly, those were the days before smart phones, so I have no pictures to capture the memory. She was funny, clever, brilliant – a neuroscientist and pharmacist – and also an amazing patient and advocate for those living with cancer. Among many beautiful things said about my extraordinary friend as we gathered to celebrate her, this comment from her Dad has stuck with me, “Liz had dignity. Dignity even through the end.” (paraphrase).

Don’s HS classmate, Jennifer, passed away this week from Non-Hodgkin Lymphoma. Don and Jennifer together survived a dangerous car accident 30 years ago; they were all lucky to walk away with minor injuries. Only thirty more years is not enough – 46 is too young to go. Jennifer left behind a loving husband and two sons.

And then to top it all off, our sweet 10-year old lab, Bridford, has a cancer diagnosis and is not feeling well this week. He had a life-saving surgery about a month ago to remove a bleeding tumor and  his spleen, and lab work afterwords confirmed the cancer has spread to his liver. We knew it could be weeks or months …. but we thought it would be longer than this. We have shed tears tonight over the confirmation that Bridford’s time might be coming sooner than later. As we talked with the boys we explained that it’s tempting to search for ways to avoid it, but ultimately we need to learn how to face it and learn from it, because death cannot be avoided. Hard decisions cannot be avoided. I think this is what Paul and Lucy are doing in the intro paragraph above. The excerpt is from Paul’s memoir When Breath Becomes Air (P. Kalanithi), when he and his wife are considering the idea of having their first child, even as Paul faces a terminal cancer diagnosis at 36 years old.

I won’t ask you to raise your hand if your life has been touched by cancer. Maybe I should ask you to raise your hand if cancer HAS NOT touched your life. If your hand is raised after that question, I highly recommend you prepare for the inevitable. Two years ago I was worried about my kid heading to high school. One year ago I was worried about Don’s diagnosis and what this meant for our life. One month ago I was grieving the loss of one friend, on high alert for the pending passing of another. And less than a week ago faced with two more unexpected cancer scenarios on our radar screen. I don’t say this to whine or complain. It stinks, for sure. But I say this as matter-of-fact. Life is bumpy. Things happen. Disease strikes. It’s part of being human. Tonight as I hug my son who cannot bear the idea of living without his dog, I will remind myself that it’s such a beautiful gift to face the hard stuff and feel the feelings. To know that as we work through each step of these hard moments, we become a bit wiser and a bit more tender, which makes us better humans. Through my pain I can better relate to yours.  At least I think that’s how it’s supposed to work.

UPDATE: Our sweet Bridford crossed the Rainbow Bridge on May 12. We miss him, but he knows we loved  him, and he sure loved us!

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Chapter 33: Everything Happens

So we have made it from December to almost March. Don’t blink! In that time: My youngest, Sam, turned 13 (?!), Don had a birthday and is still feeling good, Colin earned his lifeguard certification, Olympics in South Korea, horrific mass school shooting in Florida. Coming soon: the one-year anniversary of Don’s diagnosis, our 18th wedding anniversary, Colin turns 16 (?!). As you can see, Everything Happens. I’m sure it’s the same in your life. Time goes on, everything happens, we react, respond and adjust accordingly.

My drive to the farm is about 30 minutes one way, so I have become a big fan of audible books and pod casts. Memoirs are my favorite, maybe because I get to hear how everything happens for other people? I enjoy getting a glimpse into someone’s life, thoughts and dreams that usually includes some lesson or inspiration or both. It’s a great way to spend 60 minutes behind the wheel.

My newest favorite podcast is Everything Happens For A Reason with Kate Bowler. Kate is a professor at Duke Divinity School, married with a young son. And two years ago was diagnosed with stage 4 cancer. Her podcast explores her approach to “finding ways of talking about hardship that were warmer, more empathetic and more authentic.” Her second book was recently released and I need to check it out, but for now I wanted to share a certain episode of the podcast.

A recent guest was Dr. Ray Barfield, a pediatric oncologist, who shared moments of his practice and how he has learned to fight even though he might lose. While in med school, he loved the pediatric ward the best. The nurses, doctors and staff treated the kids gently because they were scared and didn’t know what was going on. (He observed that adults are the same – they also need and want to be treated gently.)

They conversation covered lots of ground but a few moments that stood out for me include:

  • People are unlucky in a million ways. For no specific reasons.
  • Being diagnosed with cancer felt like discovering a secret about the universe… “I’m more porous, cracked open to everything, which is the part most people are trying to skip.”
  • When caring becomes something that breaks you it will bring you to growth and change.
  • Most of us prefer binaries: winning (my best life now!) or failing; being sick helped Kate move past binaries.
  • Saying it out loud, “This is awful” has a real healing power. Don’t be afraid to name it, to give it space.
  • When in hardship, many of us learn to live vine-to-vine, moving towards the next good outcome, which may take a few different vines to reach.

“Life is not always full of bright skies and it is not always a steady march forward. There are healthier ways of thinking about your life than just expecting endless progress,” Kate says.

It was another lesson from the road for me. Here’s to our next vine.

 

http://wunc.org/post/kate-bowlers-everything-happens-now-podcast

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Chapter 32: Most Treasured Gift

What is your most treasured gift?

XmasMemoriesBookCoverI’ve had many over the years, but one of my very favorites is the Christmas Memories Book given to us by Don’s cousin when we were married in 2000. This precious book has blank pages with prompts for 20 years of Christmas memories. Our is full of my handwritten notes, snapshots and favorite Christmas cards received. Including some blank pages because sometimes mama don’t have time for all that! But it’s still my favorite thing to unpack each year when we dig out our Christmas stuff.

Since I could not pull off Christmas cards this year (gotta pick my battles), I will share a few Christmas memories here with you instead.

2003:
* Nephew Reese (3) calls my parents “Big Daddy” and “Big Mama”
* Reese and Colin (2) make “cookie houses” with Grandma.

2008: We hosted 2 Christmas gatherings – one for Triad Sign Guys staff (our small business at the time) and one for our supper club. I’m pretty sure this was the last time we hosted anything other than Thanksgiving for the family! LOL! Keepin’ it real, folks.

Samisms 2008 (3):
* When I go to heaven, I’m gonna ask God why he didn’t give me back my green balloon
* Mommy, it’s so cold outside, I’m shiggering
* No Mommy, I can’t wear those pants (shorts) because I won’t be a dude in them. I need to wear the other pants (jeans), so I can be a dude!

Colinisms 2008 (6):
* I borrowed Ms. G’s fan and told her Mommy would give it back to her when I die. But then I gave it back to her later that day, because I told her Mommy might forget to give it back
* Today on the playground I was playing house with A & J. I was the baby. No, mommy, they did not change my diaper – it was fake!

Xmas20092009:
Sunday school teacher: Who remembers the name of the city where Mary & Joseph stopped and had to stay in the stable?
Colin (7): Fresno?

2010:
* Don turned 40 this month, he received more than 40 Happy Birthday phone calls!
* Sam (5): Mommy! Why do we have to make all of these stops? I want to go home?
Colin (8): Sam! Christmas is about helping people and about God’s birthday and not about being lazy and waiting for Santa to bring you toys!

testColinNativity2011:
* We spent a week in Disney World in early December. A great trip!
* Colin’s nativity art was featured on the Christmas Eve service bulletin at church.
* Me to Colin (10): It was nice of you to help that kid who is usually mean.
Colin: Well, I’m getting worried about being naughty this year, so wanted to work on my goodwill for Santa.

2012:
* Celebrated my parent’s 50th wedding anniversary at Thanksgiving.
* Colin (10) after seeing a commercial: Mom, what’s wrong with Christmas sweaters?

2013:
* Our first Christmas without Don’s dad. We both lost our jobs that fall when our employer closed unexpectedly.
* Sam (8) at Red Lobster: The mashed potatoes are good, but not as good as the ones at school.
* I was reminded of the No-Matter-Whatness of God: God is just too busy loving us to be disappointed in us (G. Boyle).

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Christmas 2014

2014: Seems like yesterday, but this was three years ago! I started my job at Peacehaven and Don started his job at Graphic Visual Solutions. Busy year – no notes in the memory book other than the card!

2017: You have heard the story of this year through this blog. To say it’s been a blur would be an understatement. Looking back I can say there were many more good days than bad. Hallelujah.

I am reading the new book Barking at the Choir by one of my favorites, Father Gregory Boyle. He writes, “God receives our childlike painting of a tree and delights in it. God doesn’t hand it back to us and say bring it back when it looks more like a tree. God simply delights in us.” I think about my children handing me their artwork when they were young. Many of them still hang in our stairwell to the basement. Each was such a treasure and brought me such delight. You know that bursting feeling that seems to bolt out of your chest and put stars in your eyes? Like you just cannot believe that this amazing little person came from a part of you; and could you love it anymore than you do right now? This idea of God doing the same for me, for us, is quite something to marvel over. No judgement. Just love. Just delight.

This year the Chandlers have learned (and are still learning) to delight in the simple pleasures of each day. I hope the holidays and 2018 bring you many days of delight. And I hope we can share a few moments of delight together very soon.

Warmly,
Stephanie, Don, Colin & Sam

 

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Delight!