Holding Space

With Shelly Vaughn


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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.


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Big Update

Long medical update. Grab a snack and maybe set an alarm in case you fall asleep…

1. Oncology: I’ve had a couple of follow-up appointments with my oncologist lately. They are routine and everything looks good. The kind of breast cancer I had was “estrogen and progesterone positive” (ER/PR+, hormone receptive… there are few ways you may see it described). Essentially, it means that my naturally produced hormones (progesterone and estrogen) fed the cancer. They didn’t cause it, but they attached to the cancer to promote growth. So from now for the next 10 years, I’ll take a hormone blocker called Tamoxifen. It’s a medicine that blocks the sites on cells where hormones would attach for growth. The side effects of this medicine are usually hot flashes, blood clots, fatigue, mood swings, and depression- fun stuff, huh?! My dr is not worried about blood clots because she said women who had no problem with blood clotting on birth control don’t have that issue with Tamoxifen. The other things are just joys of living with this kind of cancer prevention. I’ll just do a big, preemptive apology now to anyone who has to deal with me while I take it for the next 10 years.  🙂 Since I started taking it two weeks ago, I’ve had two nights of sweating but no hot flashes during the day. Alternately, I’ve had incredible bone chills… like deep down chills in my legs and hips that have only resolved by soaking in a hot bath. I think my body was just getting used to the hormone changes because both of those issues haven’t happened this past week.

Tamoxifen treatment is standard protocol for most women after they’ve survived hormone positive cancer. But I am also going to participate in a clinical trial for a drug called Everolimus. As with a lot of medications, people can become resistive to drugs over time. And taking Tamoxifen for so long means there’s a chance of that happening. Everolimus is a drug that can potentially prevent my body from becoming resistive to the Tamoxifen. So, in theory, they work together- Tamoxifen to prevent cancer growth and Everolimus to keep Tamoxifen effective. It’s a very high level drug trial and is double blind- which means I won’t know (nor will my doctors) if I am taking the drug or a placebo. The upside- it could help in my goal to keep cancer away forever. The downside- a common side effect is mouth sores! I know…. mouth sores. I can’t believe I’m even typing those words again! I had so many for so long and still appreciate how good it feels to eat like normal. I sure hope I don’t have to deal with them again. But they prescribe a mouthwash to take along with the meds to try to prevent them. And if I do get them badly I can always opt out of the trial. So we’ll try it and see what happens.  🙂

2. Reconstruction: I’ve had two more appointments with reconstructive surgeons to plan for that surgery in the summer. My options are limited, but I’ve decided to proceed with a plan for latissimus dorsi flap reconstruction. It’s more involved than I was initially hoping for, but I am very confident that the surgeon will do an amazing job. He will actually remove my latissimus dorsi muscles from my back (bilaterally) and bring them to my chest to create a base for blood supply to the reconstructed breasts. It’s pretty fascinating what he can do. For the most part, I can stay pretty clinical/objective about the surgical side of things. But every once in a while the emotional response creeps in and I’ve got to acknowledge it. It’s not emotionally easy to be a woman living life after a mastectomy. And it’s not easy to see pictures of what reconstruction will look like after all of the surgeries and scars. But those issues are far easier to deal with than cancer so I can take it.

Standard protocol is to allow the body to heal for at least 6 months after radiation before considering reconstruction so I’ll probably schedule it for June sometime. And speaking of recovery after radiation- a lot of people are wondering how I’m feeling overall. I’d say I’m at about a 60-65% of my baseline energy and daily life stuff. I can’t do regular exercises yet, but I do PT exercises to build up some strength and try to get my arm back to normal motion again. I’m hoping to build up strength slowly over January and February, adding weight and doing some yoga at home. Then hopefully in March I’ll feel well enough to get out and run again. I miss running. It will feel good when I can get back at it.

3. And finally- my thyroid. Yes, my thyroid. A totally separate issue I’ve been dealing with. I noticed it was enlarged and ultrasound imaging in October revealed a nodule on it, which pretty much made me panic. No cancer survivor wants to hear the words nodule/mass/biopsy, etc ever again. I had bloodwork which showed my thyroid levels were off, but I wanted to wait until I could see an endocrinologist before deciding on any kind of medication for it. Today was the appointment with the endocrinologist and he was amazing! Worth the wait to see the specialist for sure. This doctor was a cross between Joel Fleishman (the doctor from Northern Exposure) and Rick Moranis (the smart, funny, nerdy character from Honey, I Shrunk the Kids… not the dork from Ghostbusters), wearing Merrill hiking boots with his dress pants. I knew we were going to get along well when he said at the beginning of the appointment- “you’re a speech pathologist, so you must be familiar with the recurrent laryngeal nerve”. The geek SLP in me got so happy, and I knew the appointment was going to go well… and it did.  🙂

Most importantly- the nodule is nothing to worry about at all! We don’t even need to do a biopsy. He said it’s an architectual change to the thyroid gland because of Hashimoto’s hypothyroidism. In his words, “it’s not even really a nodule.” He’ll keep an eye on it, but he’s not worried and said I shouldn’t be either. So, back to the diagnosis- Hashimoto’s hypothyroidism. It’s a common auto-immune condition and it runs in my family, so I’m not surprised about it. Symptoms are pretty general and common (fatigue is the biggest one) and he said it’s too hard to tease them out from my other issues this year (fatigue, slower metabolism, dry skin, weight gain). He looked back on my history with bloodwork over that last 3 years and was confident that this is not an affect of chemo or radiation. It’s just another thing that I would be dealing with right now whether I had cancer or not. He very clearly explained the structural and functional changes in my thyroid, and what a thyroid supplement does for it. So I’ll start to take that medication as well.

Through this past year of dealing with medical specialists and amazingly smart people, I have come to really value the importance of having a good relationship with medical professionals. I have a tremendous respect for these people who spend their lives studying and treating with conventional medicine. The greatest source of peace comes when I can fully trust them, and they earn my trust in how they respond to my questions. I know my body and I research as much as I need to in order to know what questions to ask (which happens to be one of my pillar recommendations when people ask me for advice- research enough to know which questions to ask. Then let the professionals answer them (not google). These professional live/breath/spend their entire lives working in the specialty fields- they are going to know more than I could ever find even if I spend every day for the next year trying learn about a topic). I digress… So I ask the questions to my doctors, nurses, etc. and their responses either build my trust with them or not. Some of my questions are admittedly ridiculous… but I never hold back. Many of them are scientifically based from my own sense of curiosity and amazement with the human body. The more questions I have, the more dialogue between my doctors and myself… and the more we have some pretty good conversations. Today, with my new endocrinologist, was one of those great conversations. (it also recently happened with the oncology dietician. I’ll probably describe that in a future post). I had several questions about alternative medicine and environmental changes to improve thyroid function from a less conventional standpoint. We had a great conversation about “alternative/functional/homeopathic/fringe medicine.” I think I’m a pretty open-minded person and today’s conversation helped me to understand how other kinds of treatment may/may not help with what is going on with my body… on a cellular/biological level. What I loved most is that he was extremely knowledgeable about current popular theories on alternative remedies and why they are believed to work. He was respectful and well-versed in different treatments, and his explanation of why they don’t work for what I have going on in my body made total sense to me. We discussed dietary affects on thyroid, selenium and iodine, healthy gut and “adrenals”, decreasing toxicity within the body, gluten and dairy affects on autoimmune conditions, and how the antibodies in my system are functioning. I know that thyroid issues are a “hot topic” with alternative medicine and after today I more clearly understand why. It’s crazy how good I can feel after a pretty substantial medical conversation. It’s a great thing to feel at peace with understanding this stuff… because with so much information out there it’s so easy to doubt yourself. No doubting right here. And living without doubt (when possible) is a great place to be.

On a slightly funny note- he compared my thyroid to Detroit. Something along the lines that it was once a booming industrial site producing what it needed to. But now it’s like urban decay- the factories aren’t working, nothing is being produced, there’s graffiti on everything and no one lives there. Kind of depressing, but I couldn’t help but chuckle, and be thankful that at least he didn’t compare it to the Browns.  😉 (sorry if that one stung some of you, but I couldn’t resist).

If you made it to the end of this- major kudos to you. You must really be interested! I can barely read through it all again for proofreading.  🙂