Scars in the Sunlight

With Shelly Vaughn


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Scars in the Sunlight

I am healthy and strong and ready to add to my story… by sharing it.

In just a few weeks, I’ll be a published author and have a memoir available on Amazon! It’s been a lot of work to get to this point- tons of drafts then working with an editor, cover designer, and publisher/friend. The book is a compilation of my entries from this Holding Space blog, with reflections on them as I look back 6 years since it all happened.

It has been so emotional- being thrown right back into each moment and reliving the hardest ones. But that has also been another step of healing for me. I am hoping that by sharing my story, insights, thoughts, and suggestions I can help other women facing the same diagnosis (or their caregivers). Sharing my story in order to potentially help someone else brings purpose to the pain of it all.

I have two important thoughts about the book that I want to share with you all- since you’re my people!! First, to reiterate the lifelong gratitude for all of you who helped us! There were so many people doing so many things for us. Reading through the entire experience really shows the immense support system that we had. Some mentioned by name. Some mentioned by the love you showed my family. All of you so special!

Secondly, the acknowledgment of the hardest thing- I wish my mom was still here for this. I mention her in the book without elaborating on her own cancer story because she was so private in her experience. Hers is not my story to share, but is still such a huge part of mine. Every word about her, what to include and exclude, was intentional. And it’s the thing I’m most thinking about as the publication date approaches. She is the reason for so much of my story- she shaped me into who I am today- and likely has a connection to most of you. All of those connections- intertwined and once faded- became so obvious to me these past few years. What a gift!

I have been held by God and by you through the hardest time of my life. You all held space for me during my unknown. Now it’s time to shift the focus through another stage of healing by changing the name of my blog to the title of my book: Scars in the Sunlight.

I will still add entries to this group- I don’t think I can stop now. 🙂 I’ll share the details of the official book publishing date and link to Amazon soon so that you all know where to find it- especially if/when you know another person with a similar diagnosis. It’s too common, but we can get through all the hard stuff… together. Stay close.


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“Because You Loved Me”

I went in for my annual MRI scan on Monday and came out with good results and a sweet story!

If you haven’t had an MRI, know that the machine is a tube that you enter and have to stay still for the duration of the test. For my breast MRIs, I have to lay face down and enter the machine feet first, while my face is squished in a cushion and an IV is in my arm above my head. (My “boobs” are pulled down to hang through the table like udders- it’s ridiculous and weird.) It’s not comfortable at all- not that any position would be comfortable if you can’t move for 45-60 minutes.

The machine is also really loud- it clanks and bangs and is hard to describe. In order to take your mind off of things, and in a poor attempt to drown out the loud noises, the techs give you a set of headphones to listen to music during the test. And they always ask what kind of music you’d like to listen to. Every time I go, I request something different. Last time I asked for 80s, which ended up being more of 80s Rock than the Cyndi Lauper or Madonna that I was hoping for.

So this time, I asked for 90s hits. The day before, I had just hung out with some of my best friends from the 90s and the music from the decade always reminds me of the best times we had in middle school. When I decided to ask for 90s hits, I was really hoping for something upbeat and cheesy- maybe some Ace of Base or The Offspring.

As the machine started moving me backwards into the unknown, I heard the tech in my headphones say, ok, we’ll start your music now just be still.

The music turned on right in the middle of Celine Dion’s “Because You Loved Me.” No, this wasn’t the upbeat fun song I was hoping for… it was better. This was the song that my mom and I danced to at my wedding.

Thanks for being with me, mom. I love you.


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I’m A Marathoner!

I know I haven’t posted here for a while, so I wanted to make sure that everyone knows right away that this is a good update!

I ran a marathon last weekend!! I ran and finished the Chicago marathon! I have smaller descriptions of the race in entries I might add later. Today, I’d like to share some thoughts I’ve had since completing it; most of which actually woke me up in the middle of the night last night. I tried to type out my thoughts during my delirious half-asleep state and then make them cohesive today. This is the best I can do…

The night before the marathon, my friend Ryan texted me this quote from a song played years ago when we were teenagers- “It’s already happened, you just need to catch up to it.” The first thing that stands out to me is that this is encouragement coming from someone who knows me, Rob, my brother and sister very well… with a long history with all of us. I always love anything that reminds me of our teenage years because I absolutely love all of my memories from that time. Every time I have gone through physical challenges, there’s something about those endearing memories that remind me how good I’ve had it (which is also why I always listened to Mr. T Experience on the mornings of surgeries).

That message- “It’s already happened… you just have to catch up to it,” really intrigued me! I’ve always been curious about how God exists outside of time. How there’s another realm to all of this that we can’t understand, but we know is not linear. And from that perspective of life, the quote made sense to me and gave me confidence to… well… just catch up to myself at the finish.

As I neared and then crossed that finish line, I was pretty emotional. I couldn’t help but be extremely thankful for this body that got me that far. That kind of gratitude for my body does not come as naturally to me as it used to. I intentionally hold my hands on my chest and say “thank you” out loud after every workout (another thing I learned from a different friend), in an effort to convince myself to be thankful. After the marathon though, it was easily genuine. A feeling I have missed.

Thoughts of that gratitude for the physical body and appreciation for pushing its limits led to thoughts and images of what “potential” means for us. I believe that God creates each of us in a unique, special way, with endless potential. That potential looks so different for everyone. This marathon; my body healing from chemo, radiation, and surgeries; creating 2 other humans… all peaks of potential unique to me. Everyone’s patterns and peaks of potential are unique like a fingerprint.

The metaphor that captures this, which circled my mind in the middle of the night, was a box of crayons. I think we are all created with potential like a standard box of Crayolas. The way that we live, grow, love, heal, and express ourselves is as limitless and unique as all of the potential things that can be created with those crayons. Use all the colors, or just black and white; make one large masterpiece or a thousand small ones, make something that an entire community sees or just your parents; color like most people or create something totally different. Our potential- physical, spiritual, emotional, relational- is really all over the map; but definitely limitless.

* My photo below is the only one that is mine. The others are screenshots of crayon art from online.


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January 20th

January 20th- it never comes without all of the emotions.

4 years ago today was my initial diagnosis.

1 more year until the big #5- when recurrence risk is low enough that I can use the word “cure”. ❤️

The details of that day have not faded; and the impact is a mess of thoughts and feelings.

It seems like a lifetime ago and just yesterday at the same time.

I’ve hated my body and been amazed by it.

I’ve felt closer to God and then not sure He’s even there.

I’ve mentally planned my funeral, and never been more alive.

I have been held up by others, and held others with even heavier burdens.

I have joked about cancer, and have been paralyzed by the seriousness of it.

I have embraced my scars, and hid behind clothes and in the dark.

I have felt thankful for being physically cured, and guilty because mom wasn’t.

Weak and strong.
Alien and human.
Depressed and joy-filled.
Frustrated and grateful.
Broken and healed.
Weary and hopeful.
And hopeful.
And hopeful.
And hopeful.

The only constants: “change and time” … and HOPE.
Artist credit: Katie Belden ❤️


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October

October is such a transitional month. The weather is a mix of warm and cool days. The typical mood of the school year sits low between the novelty of the new year and anticipation of the holidays. Even the flowers- it’s time to plant bulbs but you won’t see them grow for 6 more months.

Seems fitting that “Breast Cancer Awareness” month happens now, too. I am almost 4 years since my diagnosis, 3 months since the disease took my mom, and I don’t know how to feel. Angry at the disease itself, proud of my mom who lived well with it so long, thankful it’s not part of my story any longer, guilty that I can say that.

It doesn’t help that Covid makes everything seem wrong and weird. Hospital workers are burned out… I think everyone is.

Not to mention we’re about to have an election where people land so strongly on one side or another. I’m confused by the blurriness of Christian love how that plays out in the political world. And then I’m confused about why that’s confusing… it shouldn’t be that hard, right? How can people with the same foundation have such different resulting views. Does that mean our foundations really aren’t similar??

So, as I’m existing in this “middle of nowhere” October, I’m trying my best to soak up the precious family time. We have found ways to safely enjoy activities and the low-key/low-expectation pace has felt good.

A few weekends ago we cashed in on my birthday gift from April and went to Great Wolf Lodge. Don’t tell them I told you this, but the girls had a ton of fun together running around and laughing…. like they loved each other! 😉

It. Was. Amazing.

It also happened to be the day of the Steelers/Browns game… and you all know that made the day perfect. While up near Lake Erie, we went to Marblehead Lighthouse because… why not? The girls need a change of scenery. (We all do.)

Olivia got her pointe shoes this month and we’re so very excited for her. My mom would LOVE this so much! She would also love hearing Liana learn the violin! (Learning the violin is much easier to listen to than learning the recorder!!)

Last weekend we were lucky enough to go to “Boo at the Zoo” at Akron zoo. (Thanks to Wadsworth Community Radio!) and then do some drive-thru trick or treat in C Falls.

October- The calendar page where 7 of our favorite birthdays live- my dad (happy birthday Larry Caldwell), some of my best friends (happy birthday, Alli Herren, Mandy Daughenbaugh Schmeling, and Steph Byham, I miss you all!), Ava and Hazel (see bday pics below), and Harley the hedgehog (RIP). There are definitely some good things about the month. And some good memories that I’ll cherish forever. It will likely have one more on Saturday that will warrant its own post… 😉


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Scanxiety

“All clear” scan results again today!! It was such a relief. The “scanxiety” feeling is SO real!

I know you fellow survivors can relate. It sneaks up on you as routine appointments get close. Then it sits really heavy in the pit of your stomach, and the back of your mind, and wherever other places tough feelings go to try and hide… until you hear good results- and that is when you exhale (and probably cry and dance, too.)

I wore my mom’s sweater on scan day last week. It still smells like her even though I washed it (thank you for that, God.) As I folded it to lay it in the locker, temporarily replaced by a sterile faded hospital gown, I paused for a moment. I thought about her, smelled the sweater again, and asked her to be with me and put in a good word to suggest having a clear test. She was with me and I felt it.

As hard as life is without her physically here, I can FEEL her all the time. I felt her presence with me before the scan. I felt her during the 30 minutes my face was squashed in a cushion with the loud clanging all around me. I feel her in my heart.

It’s a terrible thing to lose your mom, but there are sprinkles of beautiful that I’m starting to see.


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Christmas Eve

It’s so exciting waking up on Christmas Eve, even when you’re an adult getting ready for work.

I remember knowing every year as a kid that we would be going to Aunt Marlene’s that night for our gift exchange. And that was the big $10 one so it was always great!

My favorite gift ever, by the way, was Domino Rally, given by cousin Ryan (though we all know cousin Kim picked it out. Or maybe even my mom just bought it and wrapped it and handed it to them who gave it to me.) Whatever the case, it was awesome. And makes me smile every Christmas Eve remembering my aunt’s house with all of the family there. Taking our shoes off in the “fancy” living room where we only went to open presents. The “Home Interiors” windmill candle decoration that seemed to make whatever MLM scheme worth it. And Pap- sitting in his chair in the kitchen next to the tiny tv in the corner, never quite sure if he was paying attention to us or just trying to hear the tv. But he always seemed happy to ask about school and grades.

Downstairs we’d spend time in the half-finished basement playing games (or Domino Rally). The unfinished half was reserved for roller skating or playing school with Amy’s real school desk in the closet.

The point is, I don’t remember if Aunt Marlene’s windows had fingerprints or there was dust on picture frames. I never noticed if she and my mom (Dorothy M Caldwell) were hurried to prepare food or worried about making sure the tablecloth matched the napkins. None of that mattered to me. I remember my family. I remember feeling joy and love. I remember always looking forward to it. And I remember thinking I was so lucky because I had a beautiful Christmas Eve every year with the “Smith side”.

I have really tried to think about things like that this year. Knowing things don’t have to be perfect for my kids and their cousins to feel magic and loved. The crazy of each celebration is eventually balanced by peace- even if it’s after they go to sleep. The important things are spending time together, making memories, and enjoying the celebration of Jesus.

This Christmas Eve, I also can’t help but think of Mary. The soon-to-be mommy, with the immeasurable anticipation of a new baby she surely felt. I vividly remember the day before I had Olivia. I didn’t know for sure she would be coming the next morning, but I did know it was close. My walk to Burger King just to get moving and order a drink. Eating spicy wings. And every place I went I felt like telling people- “you realize my life is going to change drastically any day now”. Really- they knew. I was huge.

I was so excited and scared to push a human being out of me and into this world. And, no offense to her, but it was just Olivia. Imagine knowing you’re going to give birth to God’s son. The man who would save the world. Wow, that’s important stuff- making the day before even more anxiety-provoking.

Mary was one tough cookie.

So with my “stream of consciousness” Christmas Eve post, I take pause to remember Mary and respect how she must’ve been feeling. And another pause to remember all of my mom’s family who helped make my Christmas Eves so fun and memorable. Two very different, but very important things that affected my life all of these years later.

Here’s a photo from my cousin, Kayla’s, recent wedding, which includes just a few of those amazing people. It’s minus another generation, but they’re there in spirit because we talked about all of them. Amy’s there in spirit, too.

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Christmas with Family

I had initially chosen several pictures to share from yesterday- part 1 of 3 of Christmas celebrations for us this season. You know the photo drill- everyone with their favorite present, kids baking together, and beautiful dinner platters (on paper plates). But I decided it’s more meaningful to share my two favorite parts of my family being here.

1. We played football in the street- all of us. It was fun, funny, and slightly competitive with only surface injuries to some of the adults. 😆 I had to leave the game a little early to get the ham out of the oven to get ready for dinner. I love that the layout of our home allows me to be in the kitchen, cutting ham, with this view of our street- the perfect perch to watch the people I love the most laughing and having fun. The best part, I realized, was this was about 3 hours into our Christmas, and still not one child had asked about opening presents. They were just enjoying time with each other, having fun and spending time making memories.

2. This morning was peacful and quiet. Nico and I had some time warming up near the fireplace eating Cinnamon Toast Crunch. Mine with milk; his without. He showed me all of the bracelets he wears and it was the perfect moment to give him one more gift.

When I was in Hawaii I bought a pura vida bracelet with a wave on it. It reminds me of my “trip of a lifetime” learning to surf and feeling healed from cancer. This morning, I gave a matching one to Nico so when he looks at it he can remember that sometimes life is really tough, but things get better and you might just end up surfing in Hawaii someday.

It’s not easy or frequent to have a naturally sweet moment with a 12 yr old boy. Today, I’m extra thankful to have had this morning with my nephew. He thinks my back scars are cool. I think is motocross elbow scar is even cooler. And we’re both doing ok. 👍🏻

Merry Christmas Eve Eve Eve!


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Camp Koru

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I’m writing this on the plane, flying home from an amazing experience at Camp Koru in Maui. I should be sleeping because when we land today it’ll be tomorrow at home.  But I’m still riding the wave of excitement so I wanted to share it.

I flew alone to get to camp- to meet 15 strangers who have or had cancer, along with 5 counselors (3 of whom also had cancer.)  It was out of my comfort zone to do something so big, but be so alone. Turns out this camp was exactly what I needed at exactly the right time.

We spent 5 days in Maui.  4 of them were filled with surfing and paddleboarding lessons.  There’s something about the ocean that spurs so many metaphors- changing tides, ocean waves that have traveled so far to meet you in a moment, persevering through rough waters near shore to get to calmer waters beyond it, waiting patiently out in the water for the perfect wave to come- knowing it’s worth the wait.  See- SO many metaphors. They were swirling in my head all week.

The challenge of learning to surf meant that my body got beat up quite a bit.  The rocks scratched our legs so much that when we would get out of the water the “camp doc” had us line up for the “peroxide shower”… where she squirted peroxide on everyone’s legs.  Paddling out in the ocean made our arms so sore that it felt nearly impossible at times (especially for this body that doesn’t have lat muscles anymore). My knee was so banged up and bruised that it swelled up for most of the time there. And it was worth Every. Single. Ache.  Because in the end, I was standing on a surfboard in Maui, riding waves with some of the most meaningful new friends in my life.

Surfing

What was most beautiful about camp was the natural comradery of being surrounded by other survivors.  The ease at which “cancer talk” happened so organically in conversation was surprising to me.  A group conversation would easily flow from learning each other’s favorite hobbies to discussion about how we each handled bathroom accidents during chemo.  And instead of the typical response of “awe- I can’t believe you had to deal with that”, it was laughter at everyone being able to relate; and seeing who had the most creative solution to that particular issue.  We would talk about the beautiful ocean water and then seamlessly transition to which remedies work best for long-term side effects. It felt so natural and easy to talk to these people who knew me for such a short time, but already understood me so much.

Prayer conversation:

On Tuesday night, I had an amazing conversation with a girl, “Huck,” who would soon become one my most important friends.  She is younger than me, married without children, living with chronic thyroid cancer. I had noticed the first day at camp that her medicine took up a large portion of her packed items.  At that evening’s campfire talk, she mentioned that her faith helps her get through hard times. So I knew I wanted to ask her some deeper questions about faith when we were alone. I’m so glad that I did.

Why I have not heard these words before is beyond me.  Maybe I haven’t been asking my questions clearly enough. Maybe people have told me this and I just haven’t “heard” it until now.  Or maybe no one has given me such a clear answer before. I’ll try to explain…

I had watched the movie “Breakthrough” on the plane ride to Maui. It was a heartwarming movie, but I got hung up on the fact that if we credit God for answering prayers when they are answered the way we want, how do we explain and (maybe more importantly) find peace when prayers are not answered the way we hope.

In previous conversations and readings, when I’ve asked why prayers aren’t answered, it inevitably leads to a response that “prayers are answered, just not always the way we expect.” Then THAT always leads to the same dead end in my mind of why we bother asking for anything if it’s all going to work out according to God’s will anyway. I have struggled with understanding the “why bother” side of praying for specific things. (Side note: I do see the value of prayer drawing us in closer relationship with Him, but that’s not where my hang up has been.) Remember, I’ve lost two very close people to cancer, so it’s hard for me to accept the “unanswered prayer” response. I’ve also, obviously, been healed from the disease which complicates my brain’s attempt to process all of this.

That’s when Huck’s wisdom hit so hard that I was speechless.  This is a woman who has chronic cancer, 8 years since diagnosis, unable to have children of her own.  She shared that she prayed to be cured for several years. And for a while assumed it would happen- in God’s time.  Then she realized what would bring her peace… and has brought me peace as well. She prays for God to guide her heart to have desires that align with His will.  God is more concerned with our spiritual healing than our physical healing. That spiritual healing comes when we are at peace. And that peace comes when we are desiring what He is planning anyway.  Mic drop.

Ok, I’m being dramatic. But it really did hit me that hard because it made so much sense. I feel like I finally understand how to navigate the confusing maze of “why even pray” and “God’s will is always going to happen anyway”.  I went to bed Tuesday night with such a sense of peace and understanding. Pray for our desires to align with His will. Then we have peace because whatever happens is what our hearts are ready for.

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Healing day:

Wednesday, in the middle of our week, turned out to be one of the most special days of my life.  Our counselors surprised us with a trip to do outrigger canoeing with native Hawaiians. The two natives who led our group were elders who are held in high regard in Maui.  They showed us how to paddle the outrigger canoe as a team, while singing chants in Hawaiian along the way. I was enjoying the songs and felt very connected to my team- out on the shores of Maui singing songs and gliding through the water because we were a team of warriors.  Suddenly the elder changed the words of the song we were singing to the English version. You know what it was?… “This is the Day that the Lord Has Made.” A favorite hymn. I couldn’t believe I was chanting a worship song on the ocean and didn’t even know it until then. A while later we were doing a different chant in Hawaiian, and he again eventually switched to the English translation- it was “Let the Sun Shine In.”  I’ve been listening to Frente’s version of that song at least once a week for the last 3 months on the drive into work in the mornings.

Maui Elder

So we finally navigated around a small rock wall near the shoreline to a cove.  The elder explained that the purpose of the rock wall was to help catch fish and food for the island.  Our purpose there was help build up the wall- collectively pick up some of the rocks that naturally got knocked over or worn away and pile them back onto the wall.  This would help the natives for catching food for their families. I felt honored to be invited to help build something that has been so important to these people for centuries.

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After we worked on the wall for a bit, they asked us to circle up in the shallow water.  The elders stood in the middle, filled a coconut with water, and sang unfamiliar words that wove themselves into my soul, settling deep in a comfortable spot inside my heart.  I closed my eyes, tears rolling down my cheeks as their words moved me. They walked around to each of us, blessing each one individually as he looked into our eyes, dipped a lei into the water and blessed me with it on my head, shoulders, and legs.  It is impossible to put into words what happened and how it made me feel. But I truly felt like I was healed- physically and spiritually. I had my answer about prayer life from Huck the night before. And now had this incredible feeling of being blessed and healed in the waters of Maui, through words of a different language that meant the world to me.

Side note: As I talked to Huck afterward about how moving that ceremony was, she said that she recognized “Jesus Christ” being said several times in the elders’ chants and songs.  So in the middle of this crazy emotional meaningful jumble of beautiful words, they were actually praying to Jesus.

So I walk away from this week feeling healed- spiritually and physically.  I sure hope the physical healing lasts for another 40 years. But I know that regardless, the spiritual healing is what is more important.  That comes from the peace of understanding I can pray for my desires in life to align with His will. If I desire what is already part of His plan, I really can’t go wrong… am I right?

Final thoughts:

Since my diagnosis in 2017, I have thanked God for the medicine to kill cancer and for surgeons to “fix” me. I have been in awe at my body’s ability to heal.  But I have not thanked Him for this body that betrayed me. Honestly, I’ve been bitter toward it for two and half years. This morning- my last morning waking up on a bed outside on a Maui beach to a beautiful sunrise- I closed my eyes and, without hesitation, prayed thanks for this body.  The moment I did, I was brought to tears realizing that I wasn’t bitter anymore. Which meant that for the first time since 2017, I felt truly healed- inside and out; spiritually and physically; my heart and my soul…. Mahalo, Maui.

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Surfin’ U.S.A…

 

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October 11th was my dad’s birthday, my hedgehog’s birthday, and my half-birthday. That means I have just under 6 months until I’m 40. So… I’m excited to say that I’m squeezing in a special “Under 40” experience just in time!

Marquina Iliev-Piselli is the author of the book I shared in my last post. She is also the reason I have this cool opportunity coming up soon. During our first interview for the book, she mentioned a camp that she was a part of- Camp Koru. After talking with her last year, then applying and not being able to go, I’m happy to say that this year I am able to participate in a Surfing Camp for Cancer Survivors…. in Maui!

The camp is designed to bring together survivors who were diagnosed under 40- to teach them a new skill as they learn to accept their “new normal”. So in a few weeks I’ll be trying to surf in Hawaii with several other young survivors!

If it’s anything like snowboarding or water skiing, I’ll be horribly- stiff, awkward, and falling all the time. But I’ll give it a try and see how it goes. It took quite a bit to get to this point. The timing had to work out around my other surgeries. I had to acquire enough PTO again at work. I had to apply and wait for a spot, then get my medical clearance to go. Finally, it’s all working out and I’ll be heading to Hawaii in a few weeks.

I’m extremely excited, but also very nervous because I’m doing this alone. They don’t have camps for “survivor spouses”- though they totally should since that takes just as much courage, strength, and grit to live through. I don’t know who will be there, what they will be like, or how we’ll connect. I’m sure it’ll be great, but this is so far out of my comfort zone I can’t even see it in the distance.

What an opportunity, though, right? Maui, I’ll see you soon.