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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Chimes

One of the best things about having a Spring birthday is that I always feel inspired to run at some point in the day. This year, it was in the morning before the rain came. It was dreary and chilly, but I knew I wouldn’t be out long.

The destination for this run was to my mom’s memorial tree. It’s 2 miles from our house- the perfect
distance to get to anytime.

I’ve been to her tree dozens of times now. I think about her, talk to her, and feel close to her when I’m there. It’s usually very calming and peaceful.

Not sure why today was different, but as soon as I got there I just started crying. Then sobbing. I could barely even form a thought in my mind as I was trying to talk myself out of the emotions… I was just so sad. I kneeled down and put my head on the plaque with her name and let it out. It was embarrassing and gross, but apparently necessary.

Last year, my cousin left a wind chime on the tree and it’s beautiful. But it’s also kind of heavy, which means it would take a lot of wind to move the chime and make noise. In all the times I’ve been there in wind and rain and sun and breezes, I’ve never heard it chime.

You know where this is going…

As my head was down and I was a mess, I felt a very light breeze and heard the wind chime! Probably 10-12 little, high-pitched “ding-ding-dings”… then it stopped. I stopped to listen. Stopped crying. The breeze continued but the chimes didn’t move again.

That, friends, was my mom. A woman who always comforted me when she was on earth, now found a way to comfort me from heaven.

I wiped my tears, stood back up with a sense of genuine “okayness”, and finished my run for the morning.

I love mom so much that the pain of missing her is hard to allow myself to feel. But if I had not allowed myself to feel that painful moment, I would have missed feeling her presence, too.

Thank you for such a wonderful birthday gift, mom!

“don’t look away from the arms of a bad dream.

…don’t look away from the arms of a moment.

Don’t look away from the arms of love.”

– Green Day “The Forgotten”


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Five Years and everything is gonna be alright

Today is an important one to point out- it’s been 5 years since I was diagnosed with breast cancer. In the oncology world, they consider this “cured”!!! (The feelings from today are a lot to process and explain, so I’ll focus on sharing the activities of the day instead.) I took the day off work and spent the morning with a good cup of coffee from a friend and some quiet time doing some writing. Then, I excitedly redeemed the massage gift card that Rob gave me for Christmas. It ended up being an unexpectedly funny experience that I’ll remember for a long time. My plan is to tell my grandchildren about when I’m 75 years old and laughing about funny things that happened along my recovery. I also had a nice lunch with Rob and then an afternoon full of our “ordinary”- taking the girls to and from cheer and dance, stopping at the store, squeezing in dinner. Turns out that this ordinary is pretty sweet when you feel like you have a renewed perspective on life. 💕To mark today’s occasion, I want to share a Green Day song from their Hella Mega tour last summer- “Pollyanna”. Rob and I saw them in August in Pittsburgh and it is so far my most favorite concert ever! (Sorry, Dawson High)“ I think it’s time to pull up the shades. It’s wonderful to be alive……And everything is gonna be alright.”


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Dr. Rehmus

There aren’t enough “thank yous” in the universe for this woman. She’s my oncologist- Dr. Rehmus- the person who saved my life. This post is to acknowledge and celebrate her!

I don’t think I’ll ever forget the day in 2017 when I met her. I had just learned of my diagnosis around lunch time and had an afternoon appointment with my surgeon (someday I’ll see if he’ll let me take a selfie with him, too!) It was the end of day on a Friday and I’m sure she would have been on her way out the door if not for me. Thankfully she said she would take my appointment at the last minute.

As Rob, Trisha and I walked into the room with the round conversation table, I couldn’t stop thinking about how nauseous I was and unsure if eating something would make it better or worse. Dr. Rehmus walked in with her medical student and introduced herself. I vividly remember that the first thing she did was sit next to me and turn her chair so that we were knee-to-knee. I don’t know the exact words she said but the sentiments were acknowledging that this was a hard afternoon and an immediate concern for taking care of myself- starting with getting me crackers and ending with a prescription for Ativan and instructions to pick up a bottle of wine on the way home (don’t judge if you haven’t been in that position before. 😆)

She saw me that day with all of the fear in my eyes that I couldn’t hide. She knew how much to explain and when to stop because it was mental overload. She had been here thousands of times with other patients, yet still managed to make me feel like I was her only (and most important) one. She did this throughout my entire care with the perfect combination of intelligence, reason, compassion, encouragement, and humor that is necessary for this kind of work.

I have always had confidence in her as she provided reassurance in her responses to my gazillion questions. She is the epitome of amazing medical care. Although I obviously wish I didn’t need an oncologist, I’m thankful she’s the one!

Now, after years and years of treating thousands and thousands of patients, she gets to retire! I’m so excited for her. Yes, she diagnosed me with “oncologist withdrawal syndrome” (her made-up term for what I’m going through), but I don’t know how to feel knowing that I might never see her again!!

So I will celebrate her here and introduce her to all of you and pretend like she’s a part of this group. Because I wouldn’t be here to keep writing and sharing thoughts if not for her. Not sure how a woman like that stays so humble, but I want to be like that when I grow up. 😉


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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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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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Spring Update

I think this has been the longest I’ve gone without posting an update. Sorry, everyone. That also means there are probably a lot of random things to talk about, but I’ll keep it as brief as possible.

Physically I’m doing really well. At the end of January, my surgeon stopped adding saline to my expanders because my skin won’t stretch anymore. So the size I am now is about the size I’ll be forever- a solid B! I’ll take it!

As planned, I have to stay at this point for 6 months then have one LAST surgery to replace the expanders with implants. So that surgery will be on July 19th. That’s just about 3 months away. I can hardly believe that I’m just 3 months away from the last step of this!

I’m gradually getting used to this body now. My chest and back are uncomfortable all of the time, but usually not painful. The hormone blocker that I have to take for at least 8 more years still causes joint pain, so I feel sore and stiff a lot. I’m trying to stay as active as possible to help with that.

In the last few weeks:

– I had a follow-up ultrasound to monitor the reactive lymph node under my armpit to reassure me (again for the 4th time) that it’s not malignant.

– My radiation oncologist officially discharged me from her care.

– My general surgeon said, “although you’re the highlight of my day, I don’t need to see you anymore”! (Since I have some attachment issues, I asked if I could come back in a year just so I can hear another person tell me I’m healthy.)

– The lymphedema on my right arm/hand is not too bad. The reconstructive surgery broke up some of the scar tissue that was impeding the lymph flow. So now it’s not nearly as swollen. Three of my fingers are large and my arm gets tight and uncomfortable sometimes, but nothing that a night of wearing my compression sleeve/glove can’t help.

Personally, life continues to be a constant mix of laughs, joy, frustration, peace and two pre-teen girls. Rob is busy training for the Akron marathon in September. The girls are busy with school, dance, and friends. We’re getting out to enjoy the nice weather. Work is going well but busier than I’m used to.

I’ve had a couple of sweet days with extended family that I’ll always remember (Toya Groves and Pat Smith- thanks to both of you for two special days.) I’ve also been spending some unexpected time with friends from home- time that is always cherished.

All in all- life is good. Some days the sun is shining and we feel the warmth on our skin. Some days it’s harder to feel it, but we know it’s there because we see the light. One of the greatest blessings we have is the light from the son.

Happy Spring.


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Celebrate!

Yesterday- 11/20. Exactly 10 months to the day from my initial diagnosis. I finished my treatments and walked out of radiation for the last time!
Today- 11/21. My first day without treatment. A new beginning of healing and recovery and moving on from this. No coincidence that it’s my grandmother’s birthday. I feel so lucky that I can celebrate her life and my “renewed” life in a special way this year. Miss you grandma. You made so many wonderful people to walk in the world. This year they all walked beside me beautifully. I can picture you sitting at the head of the table, eating saltines and chipped ham, wearing your humble smile as you watch everyone share love and define family in the most perfect ways. 
#caldwellsrock #peaceoutcancer #birthdays

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Waiting

This whole experience in healing has been such a lesson in patience. And now has been no exception. I’m STILL waiting for radiation to start. On Aug 30th they said 7-10 days for my plan to be complete and treatment to start. I’ve called them at least once a week since then and they keep saying that my plan is not ready. So I wait. I don’t really want to start- mostly because I know it means I’ll be fatigued for so long. But I also want to start so that I can finish. This is the last of the big steps of treatment and I thought I’d be halfway done with it by now. 

With this unexpected extra time of feeling halfway decent, I’ve been doing some painting around the house- the trim, the wood paneling, and the mantle. It’s keeping me busy, but it’s rewarding. More importantly, it helps me feel like I’m not “wasting time” waiting for something out of my control.
I’ll keep you all posted…


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Healing and Work

I am continuing to heal well from surgery while doing PT to help with range of motion of my arm and lymphatic massage (to prevent lymphedema). This last weekend was especially pleasant because I was feeling well and we were able to get out and do some activities that felt “summer-y”- a day at Hale Farm, Stow Summer festival, and a picnic with friends. I love being able to enjoy times like these and so thankful for beautiful weather to do it. Tomorrow is a big day- I return to work after being off during this medical leave. I worked through chemo, so this shouldn’t seem too bad. But for some reason, I’m feeling nervous about it. I’m going back to do work that I love and be around people who are very supportive… it’s really the best case scenario. I guess I’m just nervous about the unknown- how will I feel by the end of the day? will I have the energy to do my job well? how will my radiation schedule fit into my work/home life schedule? I guess it’s the same as every step I’ve taken so far- I don’t know what it will look like, but I know I’ll be ok. But if you feel like saying a prayer tonight it would be appreciated.
Thanks, everyone.