Holding Space

With Shelly Vaughn


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Going Home!

I’m being discharged today.  😊 The antibiotics have worked well to treat the cellulitis. I haven’t had a fever since Tuesday. And the rib cage area is tender but not painful. Good enough to get home and take oral antibiotics to finish off the rest of this infection. I hear that’s it’s been warming up and today should be a good day to get home. Thank you for the continued prayers and messages and flowers (Mindy Brisbane Vickers, Carly Caruso, Megan Nagel). Thanks to Carrie King Donnell, Sarah King Cooey, Aubree Uhler, and Maria Hogan for visiting yesterday. And my favorite threesome came for dinner and to hang out last night. The nurse let Liana touch the buttons on my IV machine, which made her day!! (Thanks, nurse Julia.) Olivia did her homework in my bed.  😆
Much love to everyone. Appreciate what you have today.  ❤️


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Cellulitis

It’s so peaceful right now. 12:40 am in a strange place. I didn’t think I’d share this, but I feel compelled to write, so here goes…

I will be fine, but I was admitted to the hospital yesterday to treat cellulitis. It’s a soft tissue infection and I got it around my right rib cage, where I had radiation. It caused a high fever that wouldn’t stop spiking, and very tender skin. I need IV antibiotics to treat it, along with some nausea meds so I can keep food down and I will be here for about 3 days. I was so upset about it yesterday when my doctor told me and I realized I wasn’t driving out of that parking lot… I did not want to be here. How could I make it through all my treatments last year without needing to be hospitalized and now this?! This crazy infection that’s causing so many problems. Then Rob got here with everything I could need (his presence was the best) and he brought the girls up after they got home from school. They’ve never seen me in the hospital or with IVs or anything like this… and I think they were ok. They ran into some friends of ours in the cafeteria, so they came up to visit as well. I fell asleep a couple of hours ago and was just woken up to check my vitals. And that’s when I realized the amazing peace in this room. It’s dark, with the rhythmic sound of the IV pump in the background. The giant “Cleveland Clinic” sign is right outside my window and is as bright as can be. But the way the green and blue light creeps through the hospital blinds is kind of beautiful. And when I peeked out in the hallway, I didn’t see or hear anyone. (I’m in the “back hallway” of the oncology floor, which is good because it’s the same floor but not near the room where I remember Allie was.) Aside from the poor woman in the room next to me who has been hacking up something all night, it’s pretty quiet and cool around here. I’ll probably feel different tomorrow, but tonight- I’m ok where I am.


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Within Normal limits

I never know these days what might trigger some random memories or negative feelings for me. On Tuesday, it was during a training at work where we had to review protocol including how to put on sterile gloves. And it immediately took me back to my chemo treatments when I would stare at the nurses while they put on their gloves (secretly making sure they stayed sterile and didn’t accidentally touch something they shouldn’t). I wanted to leave the room because it suddenly felt suffocating and uncomfortable. But I quickly reminded myself that I just needed to get through it and get out of there to get it done. Today, it was during a follow-up visit (which is at least a little more predictable). When I first got there, I had to fill out the SAME paper I fill out every time. It’s the paper that every woman getting a mammogram or ultrasound fills out. The problem is- it has a ton of questions about breasts! And I don’t like having to answer those after my mastectomy. I know, I’m probably just being overly sensitive. But I did put an asterisk by the upsetting questions with a paragraph explaining suggestions for how they could make the form more sensitive to women after mastectomies. I know… chill out, right? But the stress level is always a little elevated there and I guess today I was in the mood to share my sensitivities. The poor tech who took me back to prepare- she got an earful of my suggestions. Then we went into that same room with awful mustard-colored walls where I had my first ultrasound. (Sidenote: I wonder if it would be ok to contact a manager and suggest they change the paint color? I’m not kidding. That’s how much it bothers me.) Although this time, i immediately got a report back with great news and that’s when my feelings did a 180. My paper from the dr said “right axillary lymph node within normal limits”. There it is folks- “within normal limits”!! I didn’t know how much I loved those words until I heard them about my lymph node today. This was the reactive lymph node that they’ve monitored since surgery. And after today’s report, I don’t have to have any more follow-ups for it!

And then… (it gets better)…. I left to get a haircut!!!! Can you believe it?! My hair was long enough to need an actual cut! I guess technically it was a “trim” but at least now it has a shape. The girl who did it specializes in cutting curls- and shared a wealth of information about how to take care of this new head of hair. Who knew there was an entirely different world out there for maintenance of curly hair?!? So, turned out to be a good day. 🙂 I am having some pain in my right arm where scar banding has formed. It runs up under my armpit down to the inside of my elbow and makes it pretty sore. So I’m heading back to PT tomorrow to try to loosen it up and see what stretches I need to be doing again. Other than that, I can’t complain. Moving right along…

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Gray Area

I love the color gray! Almost all the walls in our house are gray, half of our furniture is gray, my favorite coat and shoes are gray. If I go shopping for clothes, there’s a 90% chance that I’ll come home with a new gray shirt. I just feel so comfortable in/around that color in my environment.
However, I’m learning that I do not feel so comfortable in the emotional gray space that is this “life after cancer.” Yes, I’m “cancer free”, but I’m not done with procedures. Yes, treatment is technically over, but I still go to so many follow up visits so it doesn’t feel over. Yes, I feel better than before, but still nothing like myself yet. Nothing is black and white and I miss that. I’m in the middle of my 6 month wait for reconstructive surgery… and it’s (again) something that I need to be patient with. I’m uncomfortable with this unrecognizable body… it looks and feels so different than what I know. I’ve been slowly working out more, but it’s hard to see how much my body has weakened. I caught a virus from the girls last week and it took me SO long to recover from. They did bloodwork and made sure I was fine… it’s just that my history and my current medication makes it hard for my body to recover. And, an especially weird, potentially depressing issue of bathing suit shopping consumed me last week. Please friends, do not ever complain to me about how hard it is to find a comfortable bathing suit. There is nothing that compares to shopping for one after a bilateral mastectomy. Good news though- I found one! And, in time these physical issues will continue to improve. The emotional things will too, I presume. In my attempt to be thorough and address some emotional things, I attended a survivorship support group last week. Yikes. I still don’t know how to put into words what I felt there. I know I cried the whole way home. Nobody was mean or insensitive… I think it’s just living in this reality of post-cancer life. And every time I think that or write that, I am reminded how grateful I am to be able to include the word “post”. But my heart is still sad that I’ve had to live through this… with the gripping fear of hearing the word recurrence. Although I didn’t love the group, I did hear a good take-away point that I’ll paraphrase: Don’t live in the past- it’s too depressing. Don’t live in the future- it’s too anxiety provoking. You can only live in the present. So that is currently my main goal to focus on. If you’re looking for words to encourage any survivor- I highly suggest those ones. And as I sit here and think about the present, I’m reminded of some beautiful things. Rob turned 40 on Saturday! I’m so thankful that he’s 40 and thankful that I’m here to see it happen. I’ve been lucky enough to be his partner for 23 years!! And, as always, right after his birthday is the day that Amy went to heaven. So that is what we remember today. It’s a day that anyone who knew her will never forget. It’s the day our hearts broke open in a way that could never be filled again. Oh how I miss her and miss having her guidance in life. She left this world when she was just 29. So her loss reminds me to be grateful to be here at 37; and makes me appreciate Rob’s milestone even more. If she was here I wonder if she’d tell me that instead of trying to be comfortable in this gray space, maybe I should change my perspective by changing the colors around me. I think next time I buy a shirt I’ll be thinking of her and I’ll pick one that’s as bright blue as her eyes and the sky… because that’s true beauty. And I’ll never forget how comfortable I felt in that space with her.

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Never Be Alone

This date last year was my first chemo treatment. I’m so grateful to be on this side of it and be able to say that it’s over. But, man, that was the beginning of something so much harder than I anticipated.

As usual, this morning started out busy getting the girls off to school. I had a meeting and then had a chance to work with a boy who makes me smile and laugh for a full hour. Then as I had my first moment of reflective downtime, I noticed the sweetest text on my phone from my friend- which totally reminded me of how lucky I am to have such great friends; to have a God who has carried me through this; and to be here today to be able to reminisce. The timing of the text was perfect. Just like the timing of a phone call from my sister while I was having a little meltdown in the middle of the gym earlier this week. (I’m ok now, but those moments of feeling upset and not like “myself” still happen.)

This afternoon I was able to volunteer in Olivia’s classroom for her Valentine’s party. Again- it left me feeling so grateful to be able to be there and participate this year. And as I sit here reflecting on how this week went, I realize that’s pretty much the emotional roller coaster that is my life now. Mostly grateful, very sentimental, sometimes sad- and constantly reminded that I have never, and will never, be alone in this life- even when no one is around.


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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!