Holding Space

With Shelly Vaughn


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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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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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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…


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Life Lessons

It’s been a while… so I thought I’d share a few updates:

1- I’ve healed well from the cellulitis infection. My skin is back to normal, the swelling is down, and my doctor said my blood work is “beautiful”. There are a few things that put you at risk for developing cellulitis- tissue that’s been radiated; areas with poor lymphatic drainage; and tissue that has had cellulitis before.

So, yes, I have all three of those which puts me at a decent risk for developing it again. However, I know exactly what to look for and how it feels, so I know to call the doctor right away if it does happen again. She also prescribed antibiotics to have “on hand” in case I notice the slightest bit of it starting again. I’ll keep them with me if I go out of town or anything- so I am armed and ready to fight it if it happens. As she said, if I have the meds with me I’ll probably be fine and not need them.  🙂

2- I had a long conversation with my oncologist about the clinical trial that I was doing. The medicine I was taking (Everolimus) is technically a kind of oral chemo. It’s nothing like the IV chemo I took, and the purpose of it is to make sure my body doesn’t become resistive to Tamoxifen (the hormone blocker… since my cancer was the kind that fed on hormones). But one of the results of taking it is lowering my immune system- making me more susceptible to infection (like cellulitis).

I’ve been off that study drug since I was in the hospital and we talked about it at my follow up yesterday. She feels strongly that it is worth trying again, for the potential benefits it has to keep cancer away. So the compromise is that I’ll take half of the dosage I was taking. That way, I’ll hopefully still get whatever benefits it offers, without compromising my immune system too much.

3- An unexpected result of having cellulitis was my oncologist’s concern with how this would affect reconstruction. When I was in the hospital and it was severe, she recommended that I don’t have reconstruction… ever. She was very concerned about putting me at risk for another infection and my body’s ability to heal. She said “cellulitis scares me… and I’m a cancer doctor.” I trust this woman more than anything- she already saved my life once. But that was just about the hardest blow I could’ve been dealt then. For a number of reasons, it was so incredibly hard to hear that recommendation and made for a pretty depressing couple of weeks. However, at my follow-up appointment she said she was totally impressed with how my body healed and that reconstruction is not “off the table”!!! It may have to be postponed, and we’ll know more when I talk to my plastic surgeon (he has been on vacation). So I’m feeling much better knowing that reconstruction might have to be postponed, but not out of the question.

4- Most importantly- This week, my friend has had her world invaded with this awful disease. She’s in the middle of the storm right now with her husband and it’s pretty devastating. Please pray for her, her husband, and their two children as they learn test results and make treatment plans. God will know who you mean.

Ahhh- all these life lessons about patience and love and God and faithfulness. They just keep on coming…. so keep on loving each other through it all.