Scars in the Sunlight

With Shelly Vaughn


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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.


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Improving

This past week was definitely better than the previous one. My aunt is home from the hospital and I’m feeling a little better every day. I had a whole post written about how if felt to have xrays at the ER the week before, but it’s too long and boring. Just remember that simple procedures for cancer survivors are always more scary and worrisome than they might let on. Every simple procedure requires a “prepare for the worst but hope for the best” kind of offense.

Moving on from that though… the bronchitis is improving, with just a slight lingering cough and wheeze. Last week I drove to the dr in Cleveland for another fill in my expanders, but the surgeon did not want to do it while I wasn’t feeling well and still on antibiotics for bronchitis. So she postponed that procedure one week. In turn, she also extended my return to work for one more week. Talk about a sigh of relief- I didn’t know how stressed I was about returning to work not feeling well, until she gave me that time to recover. What a gift that has helped me physically and emotionally. One more week of getting over this bronchitis and building up my endurance to get through a whole day.

Part of building up that endurance includes keeping a more regular schedule during the day- getting up early with the girls and staying awake (it sounds so easy, but…). I also need to get out of the house for various errands and appointments. Last week, I was sure to include some lunches with friends- and they were perfect. Thanks to Hannah Springer, Amber Pierce Norman, Tana Kura, and Barb Kline for the company and encouragement last week. You all have touched my life in very important ways, and I treasure the time we spend together.

I also read a great book- “The Life We Bury”. It’s a very quick read if you want to escape for a few days. Getting my brain off of my own medical issues and into some entertaining fiction was perfect. Thanks for the suggestion, Trisha Brunazzi.

So just a few additional things about surgery recovery:

I’m able to sleep a little better now, though nothing near what I used to. I don’t need so many pillows and I’m sometimes able to lay on my sides now (But if I do, I’m sore when I wake up).

I notice the absence of lat muscles most when I try to open dresser drawers. 🙂

Apparently, when I’m cold and shivering, my lat muscles tighten up a lot. And now that they are placed under my armpits through to my chest, I get really sore on my sides when I shiver. It’s actually pretty painful so I’m so thankful for my remote start in the van.

Most interesting to me is the feeling right after a fill. They add saline to the expanders so that the skin and tissue slowly stretch out a little each time I go. And right after they do it, my back aches a LOT. I realized it’s because my lat muscles are being stretched, but the nerves are still intact in my back. So it feels like I have sore back muscles even though the muscles aren’t there anymore. It’s crazy cool.

This week’s goal is to find the right balance of rest and activity so that I get rid of the cough for good and feel ready to work next week. Olivia had her own issues with strep throat and an ear infection over the weekend, so I’m thankful to have time to get this house disinfected and back to normal for us. Feeling much more optimistic about things now.  🙂


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Heavy Heart

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Here’s hoping this is the start of a better week than last week, which ended up being a mix of several different things weighing on my mind and heart.

The pastor from my church growing up passed away. He was always a guy to look up to, even though we didn’t go to church regularly. In discussions about him this week, two descriptions really stand out to me: “It always felt good to be around him.” and “His heart had room for so many people”. What a great legacy to leave on this side of heaven, isn’t it?

My aunt is sick and in the hospital with an infection. I’m hopeful she’ll be fine soon, but it’s another concern on my mind.

An acquaintance I’ve met who is still fighting her metastasized breast cancer has had a really rough few weeks. I feel for her so much. Please pray that the treatments she’s seeking out of state will be the perfect mix of what she needs to fight that awful disease.

I learned that my friend’s son-in-law had passed away right before Christmas after his own fight with cancer. We had been praying for him and I was SO hoping he would be around to see his small children grow at least a few more years.

It was also Allie’s birthday last week which always reminds me how much I miss her (and still feel some “survivor guilt”) when I think about her.

As for me, my surgery recovery is going well. I’m not on pain medicine and actually don’t feel much pain from the surgery anymore. But I do feel uncomfortable all of the time. The discomfort really affects my sleeping because I am constantly readjusting my position in the bed or recliner. I’ve had pillows situated in every position imaginable… and then some. 🙄 I take a muscle relaxer, ibuprofen, and melatonin before bed. Nothing seems to be the magic I need. And there is no remedy for post menopausal night sweats (though I have figured out the best combination for “conversion pjs” now. It’s a mix of all things adjustable and layered.)

Side bar- You know the song “Blessings” by Laura Story… “What if a thousand sleepless nights are what it takes to know you’re near?” I lay in bed and think- I know He’s near… I don’t need to reach a thousand. 😕

Anyway, in addition to surgery recovery, I’ve had a cough for a couple of weeks and was being patient to let it “run its course.” But on Wed and Thurs I started wheezing and Friday I was short of breath. My primary dr. couldn’t get me in until this Tuesday and I knew I needed something before then, so I went to Med Express. That dr said that I needed to go to the ER so they could do chest xrays. (Believe it or not, that was my first time to either of those places.)

In the end, I was diagnosed with bronchitis. Which is a source of frustration and the cough is another hit to my chances of getting a good night’s sleep. But I’ll take that diagnosis over my worst fear any day. Tomorrow I’ll share more on why that dr appt was so emotional because I think this post is probably already too long.

I didn’t even realize how heavy my heart was with the combination of all this stuff until later in the evening when Rob said a package came in the mail for me. A box from Shutterfly? I hadn’t ordered anything from Shutterfly. And addressed to Shelly Caldwell (my maiden name). How curious. I opened it to find a puzzle of a collage of family pictures, including a picture of my Grandma and quote from a song she always sang. I opened the gift, which in turn opened the flood gates.

It was sweet and perfectly timed- a reminder of good times from our summer family reunion in June. Of how lucky I am to have the supportive family that I do and to watch the next generation of cousins getting to know each other and make their own catalog of memories. Thanks, Jenn Javor-Hopwood❤️

As I was turning the box around all directions to figure out who sent the package, I caught a glimpse of the tattoo on my wrist. It did it’s job (as it frequently does) to remind me to “be still”. To stop worrying so much about the future. To be present in the “now” and thankful for all that is going right for me now. Thankful that it’s just bronchitis. Thankful that I have such supportive family members. Thankful that God’s timing is perfect for what I need. Thankful I knew that pastor who introduced me to God as a child and truly had “a heart for so many people.” And that God is who I need to trust when things feel so heavy.

This is my last week of medical leave from surgery. So please pray that the bronchitis goes away quickly so I can get some more normal sleep/rest before going back to work. And pray for my aunt and friend to be healed. And then maybe take a moment to see how God may have worked in your life this past week. It might be more subtle, but if you find it I bet it’s beautiful.

“The Lord will fight for you; you need only to be still.”

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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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Two weeks in…

I realize it’s been a while since I updated everyone. So first, let me apologize if texts or messages didn’t make sense in the last 2 weeks. I was on a lot of medication and slept through a lot of conversations. Also, if I gave you any advice, I don’t think you should follow it. I really don’t know what I was talking about it.

The surgery itself was “textbook” as the surgeon said. Everything went as planned. My incisions are healing well and I’m making progress. My doctor told me ahead of time that this was the most painful kind of reconstruction and she was definitely not exaggerating. I’ve had 2 natural childbirths and this pain was right up there with them… but no beautiful babies to snuggle with at the end.

I was supposed to be in the hospital for 4 days but ended up staying one more day until I could get some of the pain controlled. We had thanksgiving at Cleveland Clinic… always keeping things interesting with the Caldwells.

I had 6 drain tubes in my body- 3 on each side, which help drain the fluid out of of your body instead of it building up and swelling where it shouldn’t. After your body doesn’t drain as much, they can remove the tubes. As of Thursday, I had 5 of the 6 removed and they changed my meds a bit. So I’m a little more coherent and not in as much pain. Tomorrow I should get the last one out and that should feel a lot better.

It’s hard to get comfortable. I can’t lay back or it hurts the incisions that pretty much go across my entire back. To look at my incisions and surgery is really fascinating. I don’t have 2 big back muscles now. But I do have skin and my muscle from my back now where my new breasts will be. And it’s amazing to me that people can do this.

The plan will be for my last drain to come out tomorrow and let my incisions heal a little more. Then they’ll start adding the saline into the expanders that are in there.

I have to say a huge shout out to my family who came out to help so much the the girls and the house. And a a couple of very close friends who helped keep me showered and help with wound care. I’ve had several friends stop over for lunch and it’s such a pick-me-up. And thanks to everyone who has brought us dinner so far.

If you’re looking for something to do, ask Rob what he could use help with. He’s taking care of both of our kids and me. He gets my medicine ready everyday and sets my alarm so I don’t forget it. He checks in on me during lunch breaks. He’s putting up Christmas decorations. When you marry someone, you imagine buying a house together and having children. You imagine doing all the beautiful fun things in life. But you don’t imagine them counting out your pain pills and washing your hair because you can’t lift your hand above your head. I am lucky to be this loved. Thank you.


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The Day Before

The day before surgery is filled with feelings that are hard to describe. When people have been asking how I’m feeling, I usually say I’m feeling every emotion equally as strong as the next- excited, scared, nervous, relieved, anxious… all of those at the same intensity.

Because of a generous friend, Rob and I were able to spend last night and today at a resort in Amish country. Our trip included a massage for me yesterday (a suggestion by another woman who had this done and said that a back massage will never feel as good again). Co-workers, I know I was supposed to use your gift for parking and gas, etc at the hospital. But a massage sounded so much better… so I indulged.

And how about the Steelers- they pulled out a win for me yesterday, too.  🙂

Today we walked around Berlin, OH with an awesome find at an antique store that I’ll talk about another day. And thanks to my mom, the girls had a regular school day and are finishing up their evening routine now. We’re all doing our evening routine. But preparing for an unusual day tomorrow.

The surgeon called me this afternoon to see how I was feeling and answer any last-minute questions. She encouraged me again and reinforced that everything is going to be great tomorrow. My arrival time for tomorrow is 5:30 am. I’d typically think that was way too early, but I’m pretty sure I won’t be sleeping anyway. I don’t have an exact surgery time, but since I have to be there so early I’m guessing the surgery should start pretty early. It should take 8 hours. So by tomorrow evening/night I’ll try to have Rob post something on here so that everyone knows I’m doing well.  🙂

Prayer requests might seem obvious, but I’ll list them anyway. Pray that the girls are not too worried as they try to stay busy at school. Pray that Rob feels at peace during the long hours of waiting at the hospital. And, of course, that the surgery goes well without too much pain afterwards. I’m looking forward to posting on here again soon with all good news.

Love and hugs to you all.


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Answer to Prayer

Sometimes things can really jump out as being an answer to prayer. This past week, I had one of those moments and I really wanted to share with everyone.

Every single parent reading this knows that you always worry more about your kids than yourself. With my surgery scheduled for Tuesday, I was putting a lot of thought into what my girls would be doing that day. Last weekend, I realized that Olivia had been asking several times about details for tuesday and what time things would be happening. I paused for a moment and said, “Are you ok with everything, Olivia?” and she broke down. Not in an 11-yr old dramatic way. But in a soft, sweet, innocent way as she just said, “I’m scared.”

I hugged her and said “tell me what scares you about this?” and her response was “because of what happened with Mariah’s mom.” Remember that Mariah is her friend whose mom went in for mastectomy surgery and passed away 3 weeks later from an infection. So no matter what I could say to her, there’s no way to take that thought out of her little mind. I reassured her as much as I could and prayed with her.

Then, one night later, I had to break the news to her that her classmate passed away. Keith had been fighting a form of childhood cancer for several years and we knew that it would be happening soon. But man, seeing those giant tears roll down my baby’s face was heartbreaking. A while later, she said “I feel like I’m still sad about Mariah’s mom and now I’m sad about Keith on top of it. I wish the sadness wasn’t so close together.”

So here I am, worried about her for days, wondering if I should send her to school onTuesday to distract her (she didn’t want this at first because Mariah was in school when her mom died and got called to the office to leave.) Or maybe I should let her come to the hospital, though that’s a long stressful day even for adults to wait. I even thought maybe I’d have her grandma take her out for a fun day instead of school… but then Liana might feel left out.

So on Wednesday I came home from work and told Olivia that we should sit and talk about plans for Tuesday. Her response, given through bright eyes and a big smile, was “Oh yeah, I have to go to school that day! I’m really excited to go!!” She went on to explain that there was a famous author coming to her class and their class is going to read her upcoming book and help edit it! That the author wants feedback from children who are the age of the target audience. And in some way (at least what Olivia said), their class will be credited when the book is published. Side note- she keeps mentioning that the author’s husband is British and will be there too, and she’s so excited to hear his accent.

If you know me well, you know what my next step was- contact that author and let her know what this means to us. So I found her email online and sent a message to her and to Olivia’s teachers. It explained my upcoming surgery and let them know this wasn’t just another school activity, this was an answer to prayer.

The author’s name is Shelley Pearsall. She wrote back to me- that same day. She thanked me for the email and said that it meant a lot to her. You see- she’s a breast cancer survivor! She had a bilateral mastectomy last year! This is her first time back to work with students since her time off for treatment. So she understands this in a much deeper way than most. I couldn’t believe what I was reading. Crazy, isn’t it?!

So, lift your jaw and catch your breath. Then go buy a book written by Shelley Pearsall, knowing she is a special woman and will be helping my daughter on a day full of anxiety. I’m so thankful i know my daughter will be taken care of that day in the most perfect way.


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Reconstruction

10 days from now will be the last big hurdle in this craziness… reconstruction is scheduled! Back in April, I was told this might not ever happen. But I healed well from that infection, I’ve stayed healthy and strong, and my oncologist and plastic surgeon are both confident that I will be able to handle reconstruction well.

So November 20th, 2018 will be another turning point. And November 20th, 2017 was my last day of treatment. I like it. It makes sense. One year to the day!

For those of you not interested in too many details, please pray that I don’t get any sickness in the next 10 days and that surgery goes well. Know that I’m extremely excited and nervous at the same time. It’ll be hard, but worth it in the end.

For those of you who do want more details, here goes….
The procedure I will have is called a bilateral latismuss dorsi flap reconstruction. Because of my treatments so far, tissue damaged from radiation, and body type, this is the only type of reconstruction I can do. I had 4 different opinions and they all said the same thing… which was reassuring.

The procedure is complicated but pretty fascinating. Basically, they take the entire latissmus dorsi muscles from my back (the large muscle below the shoulder blade) and tunnel them under my skin around to my front. Those muscles become the blood supply and some of the mass of the reconstructed breasts. Behind that, they will put expanders that are gradually filled over time so that my skin stretches slowly. The surgeon said that my other back muscles will compensate for the missing latissmus muscles and the only activities that may be difficult in the future are golfing, rowing, and using crutches… and since I don’t plan on doing much of those I should be fine.

I will be in the hospital for 4 days and require 8 weeks off of work. Recovery will be rough and I heard it’s really painful. But so many women who have had this done say that it’s totally worth it. And I’m hoping that in another year or so, I’ll be totally recovered and saying the same thing.

Let the countdown begin…