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.

 

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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

Vinesoverwater

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).

Xmas2014

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!

 

 

Chapter 31: Nearing the end of 2017

What a year this has been.
Trump.
Cancer for Don.
Cancer for my friend Elizabeth.
My friend & colleague Dave passing away.
An almost-new colleague passing away.
My friend’s son passing away.
My friend Rene moving away.
My colleague’s brother passing away.
My colleague’s father passing away.
Plus losing the father and grandfather of other friends … these were after long well-lived lives, so sad, indeed, but not as shocking as the others.
I’m not the only one who is ready to shuffle 2017 out the back door.

Perhaps this is normal stuff for someone in midlife like me. I don’t know. I’ve never been in the shoes of a 48-year-old woman before. I don’t really like what I’m seeing in this chapter.

Gratefully, Don is doing well. We are learning the nuances of what it means to live with NETs. Who knew that when you lose your gallbladder your body does not process some foods as it once did?

It breaks my heart that Elizabeth is in so much pain and discomfort. It does not make sense that a 48-year-old woman should have to endure the things that she is enduring. It does not make sense that her loving husband and two beautiful teenage daughters have to see her suffer. They are amazingly strong which I’m sure strengthens and comforts her. But, still, none of this is easy.

And then there is the gratitude.
Gratitude for my husband who makes me laugh everyday.
Gratitude for my sons who relish each new day as theirs for the taking.
Gratitude for my friends who understand me and share my perspective of this crazy world.
Gratitude for my sisters who are only a text away.
Gratitude for my parents and Don’s mom who are available at a moments notice to support and advise.

I guess it really is the roller coaster of life. Ups and Downs. Ebbs and flows. Darkness and light. Rarely do I have one without the other. It’s often hard, but I’ll take it.

Gratitude-is-peaceAL

Chapter 30: Did you know it’s NET Cancer Awareness Month?

There are so many designated days and months that it’s really hard to know what is what. Only when your life is impacted by “a cause” do you really start paying attention! I’m sure you can relate. And there are so many important causes out there … diseases, social action, legislative action, reasons to show care & compassion. It’s impossible for me to choose just one to rally around. But of course, I am “all heart” as my sister likes to say. (I think it’s a compliment??)

But as luck would have it, NET Cancer chose us. Cancer is random like that, ya know? I’m so pleased to report that Don is doing great. He is feeling good and working like a dog (which in Don’s world means he is feeling good). My man is anything but lazy! But in honor of NET Cancer Awareness month, I wanted to share with you some facts & figures. I hope you never have to deal with this, but you just never know. This info provided by the Neuroendocrine Cancer Connection might be helpful to you or someone you care about.

Carcinoid cancer and related neuroendocrine tumors (NETs) are small, slow growing tumors found mostly in the gastrointestinal system, but can be in other parts of the body such as the pancreas and the lung. Since most of these grow very slowly, compared to other cancers, it usually takes many years before they become sizable or cause symptoms.

Carcinoid tumors and other NETs usually originate in hormone-producing cells that line the small intestine or other cells of the digestive tract. They can also occur in the pancreas, testes, ovaries, or lungs. Carcinoid tumors can produce an excess of hormonelike substances, such as serotonin, bradykinin, histamine, and prostaglandins. Excess levels of these substances can sometimes result in a diverse set of symptoms called carcinoid syndrome. Other NETs can produce other hormonal substances causing a variety of other syndromes.

When carcinoid tumors occur in the digestive tract or pancreas, the substances they produce are released into a blood vessel that flows directly to the liver (portal vein), where enzymes destroy them. Therefore, carcinoid tumors that originate in the digestive tract generally do not produce symptoms unless the tumors have spread to the liver. The hormones secreted by other NETs, particularly those in the pancreas, do not necessarily require spread to the liver to cause symptoms.

When carcinoid tumors have spread to the liver, the liver is unable to process the substances before they begin circulating throughout the body. Depending on which substances are being released by the tumors, the person will have the various symptoms of carcinoid syndrome, insulinoma syndrome, Zollinger Ellison syndrome, VIPoma syndrome, etc. Carcinoid tumors of the lungs, testes, and ovaries also cause symptoms without having spread, because the substances they produce bypass the liver and can sometimes circulate widely in the bloodstream.

Did you know that just last week Governor Roy Cooper here in North Carolina has made a proclamation recognizing November as NET Cancer Month and 11/10 as NET Cancer Day? So I guess our mysterious little disease is getting some traction. This is good news!

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NC Governor Roy Cooper declares Nov. 10 NET Cancer Awareness Day

Meanwhile, the planet somehow keeps spinning. The boys are off to a good start to the school year. Colin seems happy in his sophomore year and is doing well. AP World History is a challenge, but he’s doing a great job of staying on top of things. Marching band season just ended and now the high school swim team season has begun. Don’t worry, plenty of grass still grows under this kid’s feet … but of course it’s all under his bed where he seems permanently planted when he’s home. LOL. Sam has wrapped up his first season of middle school tackle football (7th & 8th grade). We have enjoyed watching him play … all 20 seconds of the playtime he gets in the games. Ha ha. But that’s how it goes when you are the rookie. And he still loves it! He has done a really good job keeping up with the academic load on top of the athlete stuff – we are proud of him. Fingers crossed this continues into the winter & spring!

So here in 2017 we have learned to roll with the punches. Each of us will have a turn to deal with something challenging. As a friend recently said to me, “It stinks to adult” and there are many days when I agree with this sentiment. But even on the tough days, we still have our faith, our loved ones, our friends, our work, our interests & passions … if not all of those everyday, definitely some of those most days. And it’s those things that help keep us grounded and help keep us focused on all the good that there is, even amidst the bad. I am so grateful for your friendship & support this year – and all the years – but especially this year. It has been my beacon of hope during the darker days. As we launch into the holiday season, be sure to take a moment and enjoy your time with your loved ones and enjoy the music. I especially like how these folks did!

 

Chapter 29: The Latest

I wasn’t sure if I wanted to read it, or if I could muster the courage. But after the fourth good friend – the kind of friends who know you and know what you like and don’t like, and what you can handle, or not – told me I needed to read The Bright Hour by Nina Riggs, I decided to give it a go. To fill you in, The Bright Hour, A Memoir of Living and Dying, is Nina’s personal story of her battle with aggressive breast cancer that ultimately took her life in February 2017. And to add even more meaning to her amazing work, she lived right here in Greensboro – so as she writes about taking her boys to the Greensboro Science Center or her jaunts to the Duke Cancer Center for treatment – it was warmly familiar to me on multiple levels.

Ironically, I first heard of Nina in fall of 2016, when my friend Annie who lives in NYC shared an article on Facebook. It was one of those entries from the Modern Love series the Times does, and was written by Nina. It touched me then but I did not realize the author was in my city. That could mean that I’m a sucker for a good love story but don’t always pay attention to the details.

If you find the time to read her book, you will be glad you did. Her courageous and “real” approach to living and managing the disease, while carefully tending to her marriage, and lovingly tending to her two young boys is exquisite. If you play the Kevin Bacon game (6 degrees of separation, right?) I could win with regards to Nina, because apparently I have a few acquaintances who knew her personally. I love that about Greensboro – small enough to know many here, but big enough to not feel smothered. After reading her book I feel like we could have been friends. That is what makes a book good, don’t you think? Anyway, check it out. You’ll be glad you did.

In our region of Cancerland the news is pretty good. Don had a scan last week at Duke. This was the “fancy scan” – the Gallium 68 Scan – which they say is the best one for NETs patients. It was a bit of an episode before he was finally able to climb into the machine, but he “pushed through” (his words) and was able to get a good scan. Results tell us that they did see the two tiny lesions on his liver that we knew were there; and they also saw a small spot about the size of a penny between his liver and stomach. There is a chance this may not be a lesion, but might be scar tissue from surgery, so that is TBD. But Dr. Morse did not feel that a biopsy was necessary, so we will keep our eyes on this. The next scan, scheduled for December, will tell us more, one way or the other. All in all, this is a good report. We are breathing easy; or as easy as one can breathe when you have this kind of thing on your radar screen all the time. Let’s see – Scale of Breathing Easy – 1 (super easy) to 10 (not easy) – I think we are at a 3 or 4. That’s pretty good.

In her memoir, Nina mentions how a radiation technician taped the word FAITH to her cane, and encouraged Nina to have faith because it will make a difference. Nina said her boys began to refer to her cane as Faith, “Mom, don’t forget Faith!” “Mom, have you lost Faith?” And Nina writes, “Some days I don’t need her at all, some days I depend on her heavily. Faith is what keeps me moving forward.”  Sounds familiar.

TheBrightHour

 

Chapter 28: Back to school, the cost of healthcare and being cancer-free

And just like that we have a 10th grader and a 7th grader. Wow. The summers go by so fast and before you know it we are once again knee-deep in bus schedules, homework, band practice and football practice. I need to heed the DON’T BLINK advice.

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First Day of School 2017

The patient is back to 100% and we are thrilled. One of his big work projects every year is the Wyndham golf tournament (his company provides the signage & graphics) so August was a blip as Don worked long hours leading up to the event. You would not have known he had his abdomen sliced open a mere 6 weeks earlier! He has commented that he really feels good, which I think means he didn’t realize how poorly he was feeling before the diagnosis. Speaking of 6 weeks, another thing worth noting right now are the umpteen medical bills and insurance statements that are rolling in. It looks like this spring and summer brought Don medical care to the tune of about $235,000. We pay a pretty penny for medical insurance through his employer, but I can assure you we have not had to pay anything like that! We are fortunate to have the privilege and ease to acquire decent medical insurance. It’s not cheap (does such a thing exist?) but it’s available to us; unlike so many in our country. Without insurance we could very easily be like thousands of other families in the US who end up filing bankruptcy due to medical bills. This scenario is not a good one. Our healthcare and insurance systems needs to be fixed.

Last week Don saw Dr. Feng, his local oncologist. It was a good visit and she was glad to see the reports from his surgery and time at Duke. He asked what his status was now, since before surgery he was stage 4, so what is it now that the tumor load is gone? She said he could be cancer-free, depending on what his upcoming scan at Duke tells us. We do know that there are two tiny lesions on his liver that the surgeon did not remove, so we will stay on the lookout for those. But if they are tiny and stay tiny, the nature of this disease is that they will not cause any symptoms; which could be considered “cancer-free” or “NED (no evidence of disease).” This is exciting! We are eager for the info that will be revealed from the September scan. As I have mentioned before, we know from online support groups that many neuroendocrine cancer patients live for decades with this disease. Oftentimes those folks are NED for a big chunk of that time. We certainly hope and pray this will be the case for Don. He will most likely resume the monthly sandostatin shots, because in addition to eliminating symptoms they also reduce growth of existing tumors (aka lesions). Thank you for all of the prayers and support as we navigate what is ahead.

I discovered this great song at my 30th reunion (see last blog post) and it fits this chapter we are in. Even more special, it’s written and recorded by some childhood friends (Alan Schaefer, Robert Schaefer and their band Five Star Iris). I’m sorry you cannot hear Alan sing it live in person, but it’s still worth a listen!

Luckiest Man (click to listen)
The first time in your life you were on the other side of a blue light special
You searched the aisles for a sign the bargain of your life to buy the impossible
You reached for the box of faith and everything around it way up high on the shelf
It was there all the time in the corner of your mind you needed a reason to find it

There goes the luckiest man alive – He just bought more time – He just bought the future
There goes the luckiest man alive – He just bought more time – Hey lucky man – Where’d you buy the time?

The light they sent to find you falls behind never leaving your side
Reminded by the fight unexpected prize the greatest gift is another day

We all take life for granted – A shame counting on second chances
Sometimes we get sometimes we don’t unless we pray

 

DonStephLucky

Luckiest Man

Chapter 27: The war on cancer, a reunion, and gratitude

Don has been back to work for two weeks now and continues to feel good. Hooray! I am amazed at how quickly we have fallen back into the old routines of working (sometimes late) and juggling family tasks (taking this kid there, that kid over there, did you pick up some bread? Etc.). It’s almost as if it’s been a “normal” summer.

As I’m sure you’ve heard, Senator John McCain has been diagnosed with an aggressive brain cancer, but did manage to fly to DC this week for a few important votes. With all of this came more talk of the war on cancer and all of those battle-like terms. Fighter. Win the war. Victory. Defeat. These are fine – most of us respond well to the urge to fight this diagnosis – but what if there is no clear victory or no clear defeat? What if someone must deal with this for years? Are they defeated? Are they fighting the entire time? That sounds exhausting to me. What if someone fights this battle for a decade or more, but then dies, are they a loser/failure? In my view, they are still victorious — a survivor — if they continued to live a meaningful life, even with a cancer diagnosis.

Which brings me to state of mind. For us, seizing the positive is the obvious thing to do. As I’ve told many when discussing Don’s situation, “yes, it’s a bummer, but it could be a thousand times worse.” If this is something Don (and our family) will have to manage and deal with for years (might be easy, might be hard, who knows exactly? We’ll see.) we don’t see how being constantly down and out about it does us any good. So it’s there. We are handling it in a proactive manner. We are doing everything we can. Don is feeling good. What else is there? We can live in fear of the What Ifs. Or we can live in awareness of the What We Have Today (feeling good; healthy family; food, clothes and roof over our heads; meaningful work).

A notable moment this week was my 30th high school reunion. Wow, what a time? I’m so glad I went and was able to connect with some really great people. One of my classmates is an oncologist and as I chatted briefly with him about our spring (because how many people really understand what he does every day?) he asked the right questions and then went on to describe the anxiety and stress of living from scan to scan. While I’m sure there is an element of truth to this, this is not really what I wanted to hear. We have committed to seizing the positive and plan to make the most out of every day, month, year we have on this journey. I suspect this was his way of expressing sympathy, but the delivery was poor. I scooted on to the next classmate quickly!

And finally, a few nights ago was the Gratitude Candle moment. I joined my work colleagues and friends for a gathering to say goodbye to a few who are moving on, and to welcome a few new colleagues. After enjoying a casual dinner we gathered to pass around the gratitude candle. As the candle comes to you, you share something you are grateful for. Anne started with the candle – she is one of our core members – adult resident with intellectual/developmental disabilities. She shared she was grateful for her time with our friends who are leaving and was so proud of them. And then the tears started flowing, but she said they were happy tears! Next was Jeff, another core member, and he commented on how grateful he is for the friendships he has at the farm. Core Members Jake and Molly also shared similar thoughts on their friendships and how they will miss their friends. At this point there were lots of tears from the core members and all of us. A few of the sentiments shared included gratitude for: new opportunities, old and new friends, a place where one can stretch and grow, the gift of memories, and the people in this room. Like any organization, we have our challenging moments. But the feeling of love and respect from each person that night is something I won’t forget for a long while.

I hope you will soon find a moment with your gratitude candle.

Click here to learn more about my work at Peacehaven Community Farm.

Chapter 26: Back to Work

Tuesday, July 11, 2017

DonBackToWork

The roller coaster ride isn’t over, but hopefully the things-are-moving-so-fast-I’m-not-sure-which-end-is-up part has subsided for a while. I wanted to share Don’s recent facebook post with you, so you could hear from him personally in case you didn’t see it. We both feel a great sense of relief knowing that this tough chapter is behind us. There might be a few more hard chapters ahead, but for now, we are learning to relish each day. And really, what else do any of us have but today?