Holding Space

With Shelly Vaughn


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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.  🙂


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This Time Last Year

Fair warning- today begins the “this time last year…” posts. I’m sure there will be several of them. And although they may get boring to hear about, I think it will help me move forward from this. Acknowledge the past events, reflect on them, and learn from them.

The thing about 12/29 was it was the last day of not knowing what was about to happen. I hadn’t felt the lump yet. I was unaware of the tornado that was developing in the distance. When I look at Thanksgiving and Christmas photos from last year, I try very hard to remind myself that I think it was probably good that this all started just after the holidays. Christmas “book ended” my experience, so I was able to enjoy it last year (unaware of what was happening) and this year (cancer-free). I try extremely hard not to, but when I look at time hop photos of all the events through the holidays last year, I can’t help but feel bitter about it. All I see is a host for this disease…. a body that was carrying around these cells that were rapidly growing and totally unaware of it. I talked to my friend about it a few weeks ago and she helped me recognize it as a feeling of betrayal- that something was wrong with my body and I had no idea. It was so sneaky… and spreading quickly…. and that makes me mad. I’m assuming there will be a point in life that my timeline will not just revolve around pre-diagnosis/post-diagnosis. But I’m not there yet. It makes me want to reiterate again… please do a self exam now. I know it feels like you just did one. Do it again. And then again every time it crosses your mind. Because I don’t want any of my friends to be unaware that it’s growing inside of them as well.

And because I don’t want to be a total “Debbie Downer”, I’ll finish the post with the good news. (I’m really in a good mood, but that’s definitely not coming through as I read what I wrote so far). We had an incredible Christmas. It was sweet and special and extremely memorable. I’m looking forward to sharing pics and telling some details about it, but that’s another long post that deserves it’s own space. I’ll also share the update on medical follow-ups that have happened in the last week. Not much new to report… everything is good. I just know some of you like the medical reports so I will elaborate on them sometime this weekend.

Stay warm, friends! Sending love and hoping you’ve had a wonderful week!


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So much Better

When your regular full-time work week includes squeezing in 6 appointments, it sure makes that week fly by. Everything is GREAT! The most important ones were the ultrasound of the “reactive lymph node” that’s been swollen in my armpit area and the follow-up with the surgeon. That lymph node has been bothering me since August and the previous ultrasound said it was”probably benign”. That was good but still a little unnerving because it wasn’t definitive and I could still feel the lump. This follow-up showed that it’s definitely shrinking and still looks benign. In the back of my mind for the last 2 months, I have been so worried that it was malignant and we weren’t doing anything about it. So this appointment made me feel SOOOOO much better. A biopsy had not been an option during radiation because of the high risk of infection, but my surgeon said that if the relief wears off and I start to worry again he’ll write an order to have a biopsy done anytime I want. And I may do that at some point if I do start to worry again. But for now, I’m looking forward to just giving my body a break and letting it heal with no procedures.

Another appointment was with my plastic surgeon who will do the reconstruction. We have a pretty good plan of what we’ll do to reconstruct (it’s called latissimus dorsi flap reconstruction), but that has to wait at least 6 months from radiation, so we won’t do that until early summer. He suggested that I get a second opinion because, as he said, he is very confident in the procedure he is recommending, but he wants me to be just as confident as well. The fact that he wants me to be so sure of it makes me trust him even more.

On Monday I will meet with my oncologist. I haven’t seen her since my last chemo treatment in June. We will very likely be discussing if /when I’ll need to take hormone blockers. And I have a lot of questions about current research to make sure this never returns. (I have a lot to say about that which will come in a future post).

My hair is growing in slowly… and wavy! This is a new look for me and I’m not loving it. But at least I’m healthy. I did a very brief PR piece for Akron Children’s last month with Holly Strano (from WKYC) which aired last week. Though my hair was shorter then, it was also less curly so it looked a little neater. It was a nice confidence boost in the middle of this- I may not look like myself but I’m thankful that manager and supervisor, Barb Kline, still thought enough of me to ask me to represent our department.

Getting ready for this amazingly sweet Christmas season. Hope everyone is enjoying it!


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So much food… so much love

We have had many local friends show love to us by providing meals and gift cards. (Someday I will eventually get caught up on “thank you” cards for all of you.) The time and money that we saved is immeasurable. There were many days that I felt too sick or tired to even think of food for the family. And there were other days that I felt pretty good, but because meals were coming I could spend time enjoying other things (like time relaxing or going somewhere as a family) instead of worrying about what to make for dinner that night. We will forever be grateful for everyone’s help with this. Our dear friend Jeanine Muller organized the “Meal Train” and kept it going for us when we needed it. This Tuesday’s meal from Jen Wedo included a beautiful bouquet of roses to mark the end of treatment. And tonight’s meal (the last on the schedule probably until reconstruction in the summer) was brought by Katie Ruhl and was surprisingly celebratory! Thank you to Katie for recognizing that this was worth celebrating- with sparkling grape juice to toast with the girls, a full spread of snacks and dinner, and delicious food to eat together as a family. We feel very blessed to have been shown love and fed by everyone so well over the last 10 months- our bellys and hearts are full. 

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Celebrate!

Yesterday- 11/20. Exactly 10 months to the day from my initial diagnosis. I finished my treatments and walked out of radiation for the last time!
Today- 11/21. My first day without treatment. A new beginning of healing and recovery and moving on from this. No coincidence that it’s my grandmother’s birthday. I feel so lucky that I can celebrate her life and my “renewed” life in a special way this year. Miss you grandma. You made so many wonderful people to walk in the world. This year they all walked beside me beautifully. I can picture you sitting at the head of the table, eating saltines and chipped ham, wearing your humble smile as you watch everyone share love and define family in the most perfect ways. 
#caldwellsrock #peaceoutcancer #birthdays

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22 seconds

I have 22 seconds of treatment left… ever… forever. This cancer is gone; everything I’ve done is enough, and tomorrow I close the book on this chapter. I will go in for my last radiation at 2:00. Sometimes it takes a while to wait my turn to go into the room. Then I get situated on the table while the x-ray techs line up the radiation machine with the tattoos and marks on my body. And then they all exit the room to officially start the treatment. It’s always a little strange at that moment because the “buzzing around” and chit-chat is suddenly gone- leaving me alone in the silence until the machine starts. I do, however (since I have done since my first MRI) imagine that I am not just holding onto the bar above my head, but holding Jesus’s hand… and it gives me a sense of peace in an otherwise sterile and unnerving environment. Then once that machine starts it radiates me for 22 seconds. For these last 8 shorter “boost” sessions, I’ve laid there and counted so that I know. Slow and consistent… 1 Mississippi… 2 Mississippi… 3 Mississippi- as the daughter of Larry Caldwell would surely do correctly. The last 2 times I’ve held back tears knowing that I wouldn’t have to do it for many more days. I’m sure tomorrow’s emotions will be too strong to hold back. I imagine tears will roll down my temples for those last 22 seconds of treatment. And if they do, I’ll be proud to have reached a point that I can wipe them away and cross my finish line with my hands held high. I’ve rounded third and am making my way home. I’m attacking the volleyball for one last spike. I’m about to plow through the defense in Bettis-like fashion to score a touchdown. Insert whichever sport analogy you’d like… tomorrow I WIN!


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25 down…

25 down. 8 to go. It’s so great to think that the end is coming soon. November 20th should be my last radiation treatment. That’s the week of Thanksgiving, which seems so incredibly appropriate, doesn’t it?!?. Radiation is just as exhausting as they said it would be. It’s amazing how good I feel in the late mornings- once I’m up and moving and at work I feel good. (Probably helps that I listen to some great music on the drive to work every day). But by the afternoon and after my radiation every day the exhaustion hits hard. And some days I try to squeeze in too much and hit a wall when I get home (somehow things like getting gas and stopping at the post office have become “too much”). Today was one of those days. Thankful to have delicious leftovers from friends’ meals that the girls could heat up on their own. Though Liana decided her dinner tonight was bread, tortilla chips and an apple. Sounds perfect, honey… go for it. 

My skin has definitely reacted, but not too severely. I have one large section that looks like it has a pink rash and is pretty itchy. And a patch under my arm that is dark tan colored and sore inside. My doctor keeps tabs on me every week and assured me today that these are still very typical skin changes and she’s confident I’ll get through to the end of this without much more reaction. I’m applying all of the lotion I’m supposed to use and have been adding fresh aloe from a plant I’m borrowing from a friend (thanks Alli Herren).

The last 8 radiation treatments are considered “boost treatments”. They are focused just on the mastectomy scar and are more superficial than what I’ve had so far. They say that when cancer does recur, it usually comes back along the scar line. So they do concentrated radiation in that area at the end of treatment to make sure they hit it hard. If that prevents recurrence, then it sounds good to me.

And as a “meh” moment, I just feel the need to elaborate on the “reactive lymph node” under my arm that I’ve mentioned before. Lymph nodes often swell in response to different body illness or trauma. That’s why you get “swollen glands” when you’re sick sometimes. They swell up temporarily then go down to regular size on their own. During my mastectomy surgery, I had 8 lymph nodes removed. But there are still a lot of them left in me (everyone has a different amount). One of them that remains in my armpit area swelled up and was very noticeable about 2 weeks after surgery… in August. This is very common for lymph nodes in that area since there was so much trauma to it during surgery. It’s just that it hasn’t gone down on its own. My amazing surgeon has been keeping an eye on it. After a 6-week check-up he ordered an ultrasound to make sure it was ok. The ultrasound confirmed that it’s swollen because it’s “reactive” and benign (hear that as “it’s not cancer”). At my last check-up, he measured it and assured me that it’s getting smaller even though I can’t tell yet. I just wish… like really, really, really wish it wasn’t enlarged at all. If it wasn’t, I think I could be totally excited about the end of treatment. As it stands, and not to be a downer, I feel like I”m 99% excited and 1% scared that there is still something in there. I’ll have another ultrasound on it in December to make sure it’s still showing as benign and shrinking. (If you’re wondering, they can’t do a biopsy on it right now because I wouldn’t heal and would be at high risk for infection if they try a biopsy in the middle of radiation.)

Let me say this- every day I talk myself into the positive. I have a few mantras that I say in the mirror. I remind myself I’m cancer free; that this is just a benign lymph node; that cancer is gone and never coming back. But if there are days or moments that I seem a little unsure, you’ll know why. And if you’re looking for details to pray about, that lymph node would be a good one right now- that it’s 100% definitely benign and that it goes down on it’s own very soon. I’m so tired of worrying about it. Thanks in advance. And thanks again for the local friends providing meals to help us through to the finish line! Almost there!!!!