Scars in the Sunlight

With Shelly Vaughn


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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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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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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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Four Weeks Later…

It’s been 4 weeks since surgery. To the rest of you, it probably feels like 4 weeks. For me, it feels like maybe one or two- mostly because those first couple weeks were such a fog.

Time is confusing. I often don’t know what day it is. I sleep- a LOT! I do it because I know I’m supposed to rest so my body can heal. But since I had surgery on all sides of my body there is no position that is comfortable and sleep is very restless.

A typical day has involved Rob getting the girls up and ready for school. I get out of bed just long enough to kiss Liana goodbye and wave to her through the window as her bus passes the house. After that I go back to bed for a while. The rest of the day consists of small tasks that now feel enormous, mixed with laying on the couch and dozing in and out of sleep.

Just appreciate your body when it works well. Next time you can bend over to pick up your kid’s dirty sock off the floor, be glad you can bend without pain. When you can lay on your back and fall asleep easily, be thankful that you feel comfortable enough to sleep. When you can pull the car door closed from the inside no matter how wide open it is… appreciate that reach because it is tough when you don’t have half of your back muscles.

Physically, everything continues to heal just as expected. My incisions are all healed well. I happened to have a follow-up with my oncologist today and she said she was very impressed with how good everything looks. I also started physical therapy again today. My PT was also very impressed. When I look in the mirror, I see a patchwork body like Frankenstein… so it feels good to have professionals (who have seen many surgeries) say that things look good.

Since I’m healing well, they’ve started to fill my expanders. They just add a small amount of saline into the expanders every week to slowly stretch out the skin. I’ll go again tomorrow for a little more. We’ll just continue doing that a little bit every week or two for a while… so that they slowly expand and aren’t painful.

The girls are now done with school for winter break so it’ll be nice to spend time with them. It’ll be low-key fun with puzzles and games, but that quality time is super sweet so I’m looking forward to it. Everyone enjoy getting ready for the holidays. No matter how busy things get, remember that there is always so much to be thankful for this season.


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6 Months Later

Today is May 20- which means it has been 6 months since my very last treatment! It feels like a milestone chunk of time has passed… and I really like that.  🙂

I’m feeling good and loving all of this nice weather. We’ve been spending time outdoors riding bikes, geocaching, and playing outside. The girls have a ton of fun activities happening at the end of the school year… and it’s nice to feel well for all of them this year. At their dance rehearsal last week, my friend reminded me that at last year’s rehearsal I couldn’t eat (remember my survival on slushies?!?) and had to constantly use my “magic mouthwash” just to tolerate the pain from the mouth sores. I’m thankful for those reminders to keep my perspective straight.

I have a few random cancer topics I’d like to post about… and today feels like the appropriate time to talk about recovery. When I was first diagnosed, my treatment plan had the long-term goal of “cure” (sums it up well, huh?) At a recent follow-up appointment, I asked my oncologist when we can say I met my goal. The answer was a groaning “5 years from now”. Yep- in order to actually get to say I’m cured, I have to be cancer free for 5 years. But I’m 6 months into that now, so I’m 1/10 of the way there!!

So then people ask about “remission”, “cancer free”, and “no evidence of disease”…. All terms used to describe cancer recovery at one point or another. “Remission” means that they don’t think there’s any cancer left… but they can never be sure. Cancer is so tricky and is dormant in so many people- it doesn’t become life threatening until it starts growing uncontrollably. So it’s hard to definitively say that it’s gone. “Remission” is a term used outside of my cancer world, and I’ve never heard it from any of the medical professionals I’ve been with. So when people ask if I’m in “remission”, I guess the answer is “yes”… it just feels awkward to classify something in a way that my doctor’s don’t.

Doctors are more likely to use the current term “no evidence of disease” or “NED”. This is their clearer way of saying that they don’t see evidence of any more cancer. This doesn’t commit them to saying it’s gone or cured… but they don’t see any signs of it anymore. So this is probably the term I would use if I had to choose one… because I’ve heard doctors actually use it. The caveat- they use it after PET scans, MRIs or CT scans, and I haven’t had any of those…. Because they don’t think I need them because we don’t have reason to believe there’s any cancer left.  🙂 (Yep- that just looped around into a big question mark.)

As people read through that, they may think “just be happy that it’s gone” or “why worry about the terminology”. It’s something that I struggle with because I SO
desperately want to feel “cured” and move on. My hesitation is two-fold:

1- Cancer caught me off-guard. I knew I had a high risk of it because of my family history. But I never imagined I would have to deal with it in my 30s. So part of my caution is a protective measure to prevent that again.

2- I still feel like a patient. I take oral chemo pills as part of the clinical trial I participate in. I take hormone blockers that have their own lovely (said sarcastically) side effects. I go to a zillion appointments all of the time- with my oncologist, research nurse, surgeon, endocrinologist, and radiation oncologist. They are mostly just 6 week follow-ups, but when you have so many different follow-ups they feel like they happen every week. I also have random other appointments and bloodwork to do- like my bone density test last week. So when other moms are trying to remember their grocery list to pick up on their way home from work, I have to add in a stop by the dr for a kidney ultrasound (and remember not to pee beforehand because they need a full bladder). I miss the days without all of this extra stuff. My right arm and side are sore and partially numb still- without the range of motion I used to have. I need to do stretches every day or it starts to get tight and painful. (When they say that the radiation effects last 6-12 months, they weren’t joking.) And, the obvious physical issue of “living flat” as I wait for reconstruction.

I love my life. I have moments and days of such sweet joy. But sometimes at the end of a really great day, I think “what would that day have been like for my family if I wasn’t there?”. I don’t know if that’s morbid or depressing, or just another perspective I have that other people don’t. But I’ve talked to other survivors about it and they have the same thoughts… so I figured I should share. And when people ask about my recovery and healing, now you know why the answers are more complicated than it seems they should be.

As many of you continue to ask what to pray for, I ask that you pray that this can be easier for me. That I can more simply live without so many thoughts about how I answer questions. That I can emotionally “move on” from this a little faster. For now, until I feel more confident with anything else, if someone asks how I’m doing or if I’m “cured” or in “remission” I’m going to stick to my answer of “I’m happy to be alive.”


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Race With Grace

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Today I was able to participate in a 5K race for a wonderful organization. I walked it with the kids; and although I wish I could be in shape to run it, it was kind of nice to spend time walking the distance with loved ones. So representative of this experience for me- “walking the distance with loved ones”. 
We did have a few of the athletes on our team running the race- which were impressive. Way to go Rob VaughnAlicia HofmannSean DawsonLarry CaldwellMelanie WilliamsAdam Staller!
I’m exhausted tonight. But you know what- I’m exhausted because of a 5K! I used to be exhausted from walking upstairs. So things are looking up. And I’m super thankful that Keely A Smith-Jividen captured this special photo of me during the race. Looks like I’ve got some heavenly help shining down… ❤️


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“It’s all gone”

“It’s all gone.” Those exact words came out of the surgeon’s mouth today when I asked him if he can definitely say if there’s any cancer left. I know he hinted at it during the last appointment, and I knew that the pathology report was suggesting that, but he never actually said the words. And I was scared to even ask because every other person I know with cancer doesn’t/hasn’t gotten a direct response like that. But I asked, and he said “It’s all gone”, and for the first time I actually let the joy and relief that comes with those words enter my being and feel it from the inside. I don’t know how to explain it. Like I knew it intellectually at the last appointment, but today I FEEL it… I FEEL free of cancer and he confirmed that it is gone!!! I cried, the nurses cried, and they sent me home with cupcakes.   It’s also easier to react to such good news now that I’m further in my recovery from surgery.

Along those lines, I’m continuing to recover well. My incisions are healing incredibly well. The surgeon was impressed and said, “I’ll do surgery on you any day.” The infected drain site is finally starting to look better, though is still the most uncomfortable part of this.

I started physical therapy this week and was totally impressed. The PT talked about things we’ll do to prevent lymphedema (swelling in the arm that happens when lymph nodes are removed and worsens with radiation.) She’ll also help me work on increasing range of motion with my right arm. And will help with reducing scar tissue and increasing skin movement around the incision sites. She was extremely knowledgeable about post-mastectomy needs and I’m looking forward to working through this with her. It feels good to know I can now be a little more active in my recovery instead of passively enduring stuff that is done to me.

(I still have radiation that will start in a few weeks… and I’ll keep you all posted on that as it gets closer. The dr said that radiation helps reduce the long term chance of localized recurrence. As much as I wish this was totally done, I’m willing to do another step if it means preventing this in the future.)

It’s been a good week and an especially good Friday! Also, I’m writing this as I watch the girls play “Just Dance”… that’ll put anyone in an amazing mood!   Love, Love!


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Recovery

Yesterday was August 1st… mark that in your calendars as one of the best appointments so far!!! My prayers for healing have been heard and answered. First of all, I got my drains out which was a huge relief. And the surgeon said that’s the fastest he has ever taken them out of someone (just 6 days).

We knew during surgery that there were cancer cells found in one of the sentinel lymph nodes (which is why they removed a whole cluster of them after that). I still don’t know how many more were removed, but he said there were only “isolated tumor cells” in one of them, which is technically still considered negative. No other lymph nodes had any sign of cancer. He said it was because the chemo was so effective in killing the cancer in the lymph nodes. And the original tumor had shrunk to 1.2 cm. All margins are clear, which means there were no cancer cells near any of the edges of what was removed.

With the mastectomy and lymph node removal, they basically got all the cancer OUT of me!!!! It feels so good to know it’s gone!! I’m healing well, the incisions look good, and I have another follow up next week. I’m in a lot of pain today from where the drains came out… my tissue had already started adhering to the drains, so it ripped a little when he removed the drains. I’m taking pain meds to manage that pain for now and hopefully it will be better in a few days.

I will still do radiation as is protocol for treatment. That will happen in about 5 weeks when I’m healed from this. It’s the last big step for this time period (as reconstruction will happen next year).

My mom was here to help a ton last week. And we’ve had a lot of help with the girls and visitors to the hospital (thanks, Lisa GonidakisCindy Hastings WinterBrittany ArmstrongAmber Pierce NormanHannah SpringerKeely A Smith-JividenCinnamon Leonard, Becky Kearns, and Doug Gates.) I also had my own personal nurse today to help with changing my wound dressings (Kelly Dawn Hobbs) . It’s times like these I realize how wonderfully God has paved the way ahead of me… all the people He has placed in my life and ready to help when I need it. Thanks for all the prayers… please keep them coming for comfort as I continue to heal and pray that the pain subsides. Thanks everyone!