Scars in the Sunlight

With Shelly Vaughn


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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…


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Get busy living, or get busy dying…

28 days= surgery recovery.
Day 29= run a 7K. 🤦🏼‍♀️

Yes, that’s a face palm emoji because my legs are asking me right now WHY in the world I did this. The timing wasn’t my choice, obviously, but I couldn’t miss the coolest run of the year.

The Shawshank Hustle starts and ends at the Ohio State Reformatory, where “Shawshank Redemption” was filmed. This year, for year 5 of the race, they had THE coolest medals- a bible that actually opens up with a removable rock hammer inside! I couldn’t pass up the chance to earn that! Also, everyone was randomly assigned a race shirt that was either a guard or an inmate. 😆

Anyway, the race went well and was a lot of fun. We got to tour the reformatory afterwards, too. Melanie Williams, it’s always fun to hang on race days with you. Thanks to Lisa Gonidakis and Jessica Eckhart for helping with the girls so we could do our thing.

This race happened the day after I was “ok” to return to normal activities. In my mind, it commemorates moving forward from here on. I know I always read too much into everything. But important milestones should be marked with important events- like being chased by a warden out of a prison from one of the best movies ever! (I beat the warden, by the way! 😆


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Continued Healing

It’s been 2 weeks since surgery and I’m healing really well. It was more extensive than I had planned for, but everything seems to have turned out ok.

The plan was to take out the expanders and replace them with permanent implants. Then she would do fat grafting to take some fat from my belly and put it around the implants so that they looked natural and symmetrical.

She started with my right side, which turned out to be more difficult than expected because of the amount of scar tissue from radiation. Since the tissue was tight and scarred, she needed to add more fat around it. And then had to match that on the left side. So instead of just belly fat, she took a little bit from everywhere- my thighs, hips, belly, and even the side of my knees!

This means that I had 19 small incisions and stitches all over me and a ton of dark, ugly bruising. I had to wear a pretty awful/ridiculous compression garment inserted with silicone pads all over my legs and torso for a week to keep the bruising and swelling down. Rob had to help me get in and out of them- like I said- “ridiculous”.

After a week, I graduated on to wearing Spanx and a medical compression bra. I wear these 24/7 for 4 weeks. Not the most fun, but better than last week. My bruising is getting much better and I can move around pretty well if I take it slowly. All but 2 of my stitches are now out. I also started PT again, and will do this again for several weeks as I heal. I love my PT, so I’m happy to start working with her again.

I’ve had an unexpected emotional (or unemotional) response to this. I haven’t been as excited as I thought I’d be… maybe just because recovery wasn’t quite what I anticipated. I imagined a quicker recovery and quality time with the girls. I barely remember the beginning of the first week, and then it felt like the world suddenly moved on and it was time for me to be ok. But I wasn’t.

I was lazy just lying around watching a lot of tv, when I felt like I should be outside doing summertime things with the girls every day. But even sitting outside was too hot (especially with all of these compression garments under my clothes).

Then this past week, Olivia’s friend invited her to a 3-day “outdoor survival challenge”, where the girls have to set up a tent and stay outside in the backyard for 3 days with no electronics. It’s amazing. This is the second year she has done it and she loves it. (I do, too. Thanks, Sierra Hampl.)

Olivia’s time at her friend’s allowed Liana and I some solid, relaxed time together. So, we spent a few days designing and planning a new platform-ish bed for her. She’s been asking for it for years, wanting a bed like in the show “Good Luck Charlie.” It has morphed into her own version of it, but it’s coming along. Thanks to Rob Vaughn for all the heavy lifting of pallets and platforms. And Michael Clay Donnell for helping with materials from our church. I’ll share pics when we’re done if it turns out well.

I found that setting a goal with my daughter and feeling productive at the end of the day does a lot for my mental state. Although I can’t be out swimming, playing sports, and taking them to the park, at least I’m doing something for my kids… well, one of them. The other gets “goat yoga” next week.


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Mile 12

A half marathon is 13.1 miles. I’ve run it two times in the past, and both times I thought mile 10 was the worst. By mile 10, my knees were screaming at me to stop. Not because I have an injury, but more like “can we please stop doing this same repetitive motion that we’ve been doing for two hours?! Enough already.” (Kudos to everyone who can do a full marathon, by the way. Especially to Rob, who is in the middle of training for one and so far- killing it. )

In the past, I’ve thought about why 10 was the worst. It was painful and hard (as expected) but for some reason miles 11-13 didn’t seem so bad. I think for those miles, I was close enough to the end that the pain didn’t matter. I was almost done.

Well, in this experience, I’m heading into mile 12 of this race I didn’t sign up for. 10 would have been November’s surgery because I was nearing the end but it was so painful. I’m going into 12 with one more surgery on Friday, then it’s just healing up to cross that finish line and be done with all of this.

Friday is my exchange surgery. They’ll take out the expanders and replace them with implants. The expanders are hard with metal in the back that is stitched inside my skin. Uncomfortable all the time, but I’ve gotten used to it. But now, after Friday, they should actually look and feel more normal. No more strange metal parts in my body. (Whoa- I just realized that’ll be the first time since this started I’ll be metal-free! I had my port placed, a copper IUD, then the expanders. The first two have already been removed… and these will be the last to go! Well, I do have about 50 permanent staples under my right arm from the original mastectomy, but I won’t count those right now because I’m excited.)

Anyway… it’s time for “squishy boobs” and I’m so excited. It will be an outpatient procedure on Friday so I’ll be home that evening. The doctor said I’ll be bruised and feel like I got beat up. But should feel good enough in 2 weeks to return to work and totally healed by 4 weeks.

Mile 12, people… here we go… so close….


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Vacation

Yellowstone Trip 2019

I’m writing this from the hotel room in Salt Lake City- our last night of a 10-day vacation to Yellowstone and The Grand Tetons. With some amazing planning by Rob, this has been the trip of a lifetime for sure.

We saw every bit of wildlife imaginable including 9 moose yesterday, 10 bears, coyotes, elk, bison, eagles, fox, pronghorn, owls, and even a wolf eating a baby bison (which had died of natural causes). The scenery and unique geological features here are outstanding- leaving us in awe of the Creator behind such design.

Rob and I came here before we had children, but it was especially nice to see the wonder through the girls’ eyes this time. We knew we wanted to bring them here when they got old enough because it’s so gorgeous with so many unique things to see. They made me proud with their hiking skills (though not so much if you actually told them they were “hiking”) and with their excitement for wildlife. But 10 days without a break meant a lot of fighting in the car, too. Seriously though- you can only tell someone is looking at you if you are also looking at them. How is this still an argument!?!

All in all, it’s been an amazing week. I wonder what the girls will remember and tell their children about someday. The cold rafting trip down the snake river? “Moosefest 2019” (our nickname for when we saw all the moose in one evening)? The wagon ride to a mountain cookout?
Digging for fossils? Earning their Junior Ranger badges in the Tetons? Probably the free cookie at the hotel room tonight. Whatever the case, I hope the trip has sparked an interest in them that will never fade. I know it never will for me.


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Pray For Lea

Lea is a sister in Christ. A mother, wife, and fellow breast cancer survivor. Though I knew her briefly many years ago, we reconnected in 2017 when she was diagnosed just after me. We’ve shared doctors and specialists, our radiation schedule was almost identical- so much that I would see her name on the list of patients in the radiology suite right after me. Most recently, we’ve seen each other with our families at Stewart’s Caring Place where we’ve gone for their family Halloween and Christmas parties.

Yesterday I heard that she is not doing well. Her cancer has metastasized and is in her bones. Her prognosis is about 5 months. 5 months, friends. I cannot imagine hearing that kind of news. My heart is broken.

Please pray for Lea. I heard that her spirits are up right now, but she is in pain and having trouble walking.

And, only after you’ve prayed for her and her family, I’m asking if you could pray for my heart to have peace with this. First Linsy Biege, then Jennifer Johnston, then Laura Ritter Allio… they are all young women who I’ve met since 2017 who are no longer here. I don’t want this to happen to another one. I can’t help but feel scared. This is the reality of living in the world of that terrible disease. I hate it.


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Always There

I saw this on a website a few months ago:

“Imagine you’re going about your day, minding your own business, when someone sneaks up behind you…

You feel something press up against the back of your head, as someone whispers in your ear.

“Sssshhhhh…. don’t turn around. Just listen. I am holding a gun against the back of your head. I’m going to keep it there. I’m going to follow you around like this every day, for the rest of your life.”

“I’m going to press a bit harder, every so often, just to remind you I’m here, but you need to try your best to ignore me, to move on with your life. Act like I’m not here, but don’t you ever forget… one day I may just pull the trigger… or maybe I won’t. Isn’t this going to be a fun game?”

This is what it is like to be diagnosed with cancer. Any STAGE of cancer. Any KIND of cancer. Remission does not change the constant fear. It never truly goes away. It’s always in the back of your mind.

Please, if you have a loved one who has ever been diagnosed with cancer, remember this. They may never talk about it or they may talk about it often. Listen to them.

They aren’t asking you to make it better. They want you to sit with them in their fear… their sadness… their anger… just for the moment. That’s it.

Don’t try to talk them out of how they are feeling. That doesn’t help. It will only make them feel like what they are going through is being minimized. Don’t remind them of all the good things they still have in their life. They know. They are grateful.

But some days they are more aware of that gun pressing into the back of their head and they need to talk about it. Offer them an ear. ❤”

To continue with the above analogy, I’d say that most of my days are spent with just an awareness that there’s someone behind me. And today would maybe be one where I felt the touch.

I’m fine. Really. But I had a follow-up kidney ultrasound this morning. It’s only because way back when this started in 2017 they noticed a small nodule on my kidney which is “very likely a cyst.” Cysts are very common and most people have them but have no reason to know they’re there. But with my history, my dr wants me to get annual checks on this to make sure it doesn’t change size.

The tech doing the ultrasound said she does so many of these for people monitoring something that was a finding from another test. She actually said that this morning was “full of kidney ultrasounds” for her.

I know it’s nothing. I know I’ll get a call in the next few days that says it’s fine and I’ll just do the same thing next May… and every May forever. But, as much as I hate to admit it, the thoughts crept in today and we’re unsettling.

Thankfully, my day at work was good and I came home to this beautiful weather- perfect for hammock laying, trampoline jumping, dinner outside, and yard work. Thank you, God, for the sunshine and the peaceful evening.


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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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Majors and Minors

A few important things happened recently:

First, one that requires a moment of pause. My friend who I asked for prayers for a few weeks ago has passed away. She did not respond to the treatments for her cancer the way we were hoping. Laura Ritter Allio was laid to rest today as her husband, 2 yr old son, and hundreds of people said goodbye to her.

I’m learning that this is part of my life now. Being involved in this world has introduced me to so many people I would otherwise not know. Laura was one of them. I’m thankful for meeting people and making instant connections with fellow “pink sisters.” But it is hard to become friends with people who are called to heaven sooner than seems right.

Bookending my friend’s sad news is two good things on my part. I know Laura would not want her death to take any joy from my good news, so I’m allowing myself to feel excitement for the following things.

Friday was my last follow-up appointment with my radiation oncologist. She’s an extremely nice doctor who always made me feel good about the treatment, but I am happy that I no longer need to see her. As I was leaving her office, she gave me a hug and said, “Have a long, happy, healthy life.” (Yes, ma’am… I will.)

And today marked the last day of the drug trial for me. It’s been 54 weeks that I’ve taken the oral chemo. The study is to determine if taking it for one year after treatment helps to prevent recurrence. So another item on my treatment list can be crossed off. And I plan to be one of the study participants to really skew the results in the positive direction (you know, like it never returns and I live as long as my Grandma Caldwell.)

Today also happened to be the day that we had a special delivery from my Aunt Dolly- some surprise chocolate hedgehog treats that came in the mail. It was perfect timing (I’m noticing a pattern with me saying that…). I’m so thankful that I am able to keep moving forward and making progress with my health. These seemingly minor things are pretty major in my book. 🙂

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Two Years

The sting hurt a little less on Sunday. It was January 20th, which was the day two years ago that I first heard the word “cancer.” Last year, on the 1 yr anniversary (?) of the date, I was pensive and melancholy all day. This year, I knew the date was approaching but didn’t think about it until that night when I was getting ready for bed. And instead of the PTSD feeling, it was a feeling of joy and gratefulness. I’m here. The disease is gone. And I’m 2 years into my 5 year mark to be considered “cured.” And hey, I’ve got boobs this time around!

It has been an absolute blessing to be home this past week and preparing (mentally and physically) to return to work.
Yesterday I was home while the girls had off for the MLK holiday. We took them to the Science Center because it’s free on MLK day. Which also means its crowded full of everyone near Cleveland who can enjoy the science without the cost. Olivia is 11 now, and at first her interest seemed questionable. I was so surprised because she’s our science/space lover and she was wandering around like nothing was too interesting. But just before I started internally weeping because I thought my daughter had outgrown the facility, she was smiling and laughing and playing with her friend. Then I realized- it’s the 11 yr old phase where they’re too old to be kids but too young to be teens. So maybe she was resistant to the idea of playing with things that little kids like. And that feeling was probably heightened because she had a friend with her. But by the end of the day, the intrigue of science beat out any awkward feelings and they were laughing at their funny images in the mirror, playing sounds and music on a variety of different objects, and pulling each other’s arms to look at the next cool demonstration.

Today is my last day of medical leave… and it’s a snow day for the girls!!! Perfect, right? I get to be home with them on the snow day for the first time in forever! There’s not much harder than leaving for work on snow days when Rob and the girls are home. I get so jealous sometimes that he “gets” to be home. And sometimes in the dead of winter (after several snow days have been in the books) he gets jealous that I “get” to go to work.  🙂

We’re getting ready to brave the temps to go sled riding in this powdery fun. I can’t pull a sled up a hill, so I hope the girls are ready to help. And it hurts a lot to shiver, because those lat muscles that now come around my sides to the front are still tender and hurt when they tense up. But it will be worth it. Because I am here and healthy enough to make these memories with them. And with the anniversary (?) so fresh in my mind, I feel an extra sense of joy about it today.