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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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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Two bags of trash

Two bags of trash- seems like no big deal but it was SO emotional. (I wonder how it feels for other people who aren’t so sentimental about every little thing in life.😆).

These bags are the last round of my “cancer stuff” that I’ve held onto. The “essentials” from surgeries and treatment that I haven’t gotten rid of yet. In trying to explain to Rob, I realized that this seemed important enough to include on this page- and so I’ll share…

These two bags are filled with the medical things that helped me through cancer treatments- the expired numbing cream to go on my port each time they accessed it for treatment; the wraps to keep the bags of ice on my hands during chemo treatments to minimize neuropathy; the “drain apron” that was essential to hold the drains post-surgery; the bandages and binders to help hold my body together as it healed. These items were valuable to me along the way, and holding onto them has made me feel prepared for the “what if…”

I’ve always thought that part of the PTSD aspect of my experience was that it was so sudden and unexpected at my age. And I wonder how differently (if at all) it would have felt to go through it when women are “supposed to”- more like in my 50s or 60s. I wonder if it wouldn’t have been so traumatic if it was more expected and I was more prepared.

It makes me think of the wave that knocks you over in the ocean: when you’re facing it and watch it get closer to you, you are ready for the hit no matter how hard it comes. You bend your knees and you either dig your toes into the sand to stand firm; or you time a jump just right so that you can ride it out with a little grace. It doesn’t seem so bad when you are ready and face it head-on.

When you’re not expecting it- that’s when the wave knocks you over completely. That’s when you face plant and get a mouth full of saltwater. And you get all turned around and disoriented for a minute, not knowing what happened or where it came from.

I pray every day that I don’t get hit by another wave. I feel guilt because my mom didn’t recover from her wave. And the recent anniversary of the day Amy went to heaven reminds me that it can be even more unexpected than my own hit.

Subconsciously, but not too far down to retrieve the thoughts when I need them, I know I’ve hung onto this stuff just in case. Today, in a moment of freedom and excitement and worry and guilt and fear and peace… I let them go. ❤️


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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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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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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.


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TOUGH: Women Who Survived Cancer

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Not much bonds people together like shared experience. And not much feels more supportive through a life challenge than knowing someone else can relate to it. Now friends, there is a tangible way to make that happen for any woman who has to survive through a cancer diagnosis.

I’m excited to share that my story has been published… in an actual book! It’s part of a collection of essays written by 37 cancer survivors. My friend, Terese Gavin, who is also a survivor, let me know back in 2017 that she heard about this project and suggested that I look into it. (Terese, I’ll forever be grateful to you for this.)

The project was started by Marquina Iliev-Piselli, a breast cancer survivor who is known for her approach to treatment through “glam chemo”. She was looking for stories of other women who got through cancer treatment in creative ways, so I submitted to the project to share how I used this Facebook group and blog to connect with people and share my story.

Thankfully, Marquina chose my story to be added to the collection, and worked hard to get it off the ground and onto actual pages.

I’m so excited and proud to be a part of this. I feel like it’s exactly what people need when they are diagnosed, going through treatment, or if they know someone doing those because it’s 37 different perspectives on what that experience is really like. Each of us also included our own “best advice” that is honest and inspiring… even as I read others’ advice long after my own treatment is over.

Listen, we’re all human trying to get through tough stuff. So if you know someone who is diagnosed, or in the middle of treatment, I’d suggest sharing this book with them. Not because my story is in it, but because there’s not much more valuable than realizing you’re sharing your experience with 37 other not-so-strangers-anymore from around the country.

I’ve often said about 2017: Though I was more surrounded and supported than ever, I had never felt so alone. If I had this book at the time, those feelings would likely not had been so strong. These women sharing their stories that include all the messy feelings of fear, hope, anger, confusion, and faith- they all give survivors the invaluable support of shared experience.

Here is the link to the book on Amazon. It’s a best seller since it was released.  It means people are reading it. And knowing that people are reading our stories gives purpose to our own struggles.

TOUGH: Women Who Survived Cancer https://www.amazon.com/dp/173303420X/ref=cm_sw_em_r_mt_dp_U_CviPDbR37ZJD6


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It’s October, so get out your pink. I’ve been so hesitant to embrace the pink in the past- I think because I feel guilty that other people don’t get a whole month of recognizing their challenges in life. And I was so determined to not let my experience define me. But the further away I get from the shock and fear of what I went through, the more I can see the value in acknowledging the importance of the challenges and celebrating my cancer-free life.

Today was “wear pink” day at work. I almost didn’t wear my shirt because it said “Survivor” on my back. So I wore my work backpack for a lot of the morning to conceal it. Then at lunchtime, we gathered for a picture for all the employees who wore pink to work. And there, one of my closest survivor friends, Melissa Samulak greeted me with the best hug I’ve had in a while.

There are a lot of really crummy things about 2017. But there are at least as many, if not more, wonderful things. One of them was meeting this woman who would fight her own battle shortly after me. I still cannot clearly explain what it feels like to go through cancer treatment while working at a very public place. But the comradery and closeness of walking alongside someone whose experience is similar is something very special. After catching up with her and seeing her beautiful smile, I was reminded that being a survivor isn’t something that should be covered up by a backpack.

Thanks to everyone who wore pink today at work. And to everyone wearing pink at their own workplaces this month.

I’ve been a little absent from posting for a while. Trying to be online a lot less and not over-thinking everything in life. But I do have some good things to share, and I think this month is a good time to restart the blogging. Stay tuned…