Holding Space

With Shelly Vaughn


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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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What a difference!

What a difference! The girls’ dance studio performs at the halftime show at a basketball game every year. Last year, it happened to be on the evening that I got my port placed. I remember going there with my arm bandaged up and only a handful of people even knowing the road I had started down. I remember thinking how lucky everyone else was because they didn’t have cancer and they weren’t going through what we were (I now know that perspective is skewed.. because everyone is going through something challenging- different but sometimes just as hard). Olivia performed so well last year and I was so proud… and scared to be uncertain of how my own story was about to play out.

Last night both of our girls performed together in the dance. I know I’m biased, but Liana’s little hips shaking were just about the cutest thing I had seen all week (and I witnessed a lot of cute moments at work this week). I felt joy in my entire body watching those girls dance. To say I was beaming would be an understatement. It was only 3 minutes, and it was probably a pretty average dance number. But it felt so good to be sitting there seeing it through these eyes again.

This entire year, my friend Hannah Springer shared a gift for reminding me how my girls were doing. She texted me many times when she knew I was struggling… and she would tell me how she noticed Olivia smiling with her daughter, or heard Liana laughing with her friends. She would remind me, when it was most appreciated, that my girls were ok. And she’d remind me that she was praying for them and our God was keeping their hearts safe. (Side bar- I know so many of you prayed specifically for them like this, and it has been appreciated more than I could ever say.) Last night, she compared them to the bible story of Shadrach, Meshach, and Abednego- three men who were thrown into a fiery furnace but came out unscathed because they were protected by God. In a most meaningful way, she compared our two little girls to those men- because those sweet souls have walked through a fire this past year and they are thriving and doing so well now. Deep in my bones, I hope that they are unscathed and unharmed. I know they cannot be same as they were before it all… none of us can. But I’m so hopeful that the changes within them are positive and not negative- that they are more brave, determined, faithful, appreciative and loving than ever. We all find ourselves in a fiery furnace at different points in our lives… and we have a God who will be right there with us through every step. I’m so thankful He has been there to protect my little dancers.


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Diagnosis day

Diagnosis day (recalling this day from 2017): It’s fascinating to me that words (sound waves that our auditory nerves perceive and interpret) can become so ingrained in our memories that we never forget them. Of course, I remember the day my girls were born and the dr saying “It’s a girl!” I remember when my mom called me in March 2007 and said “Amy’s gone.” And I still remember back in February of 1996 when Rob first said “I think I love you.” I can hear each of those phrases so vividly in my mind. This day last year is when another one was added to the list. “Dr. Fenton wants to see you this afternoon.” And just like that… my. world. stopped.

Remember that earlier in the week I told the doctor that it was ok to call me if they got the biopsy results on Friday. I was at work and missed the call, so there was a message to call Lisa at Dr. Fenton’s office. I honestly thought that it was going to be a quick phone call to tell me I was fine. Then Lisa said those words- “Dr. Fenton wants to see you this afternoon.” My stomach dropped lower than I knew it could. I can’t imagine what my face looked like. I knew what that meant. All I could say was “Ok.” Lisa, this woman who works for the dr office, has an impossible job… and does it so well. She knew that I knew. And simply said “Do you want to know what it is?”
Yes.
“Invasive, poorly-differentiated ductal carcinoma.”
Ok. Can you say that again so I can write it down? (I couldn’t even process that she was saying “poorly”… i thought she meant “pourly”- which isn’t even a word.) Once I got it written down, she told me to come in at 3:15 to meet with the doctor. She started telling me that I would meet with a nurse navigator who will help me through all of my appointments. I could not even process what she was saying to me, and she knew it. So she told me to call my husband and she would see me in a couple of hours and the doctor would explain everything then.

I hung up and stared at the phone. What just happened? What are these words scratched on this post-it note? That’s not me. That’s not my diagnosis. This isn’t real. What do I do?

I called Rob, shaking, crying, in shock… somehow I guess I told him the news. In a matter of a couple of minutes he knew and was on his way to come to my work. Wait… I’m at work. I have a student coming in today. I have patients to see and work to do. There was only one other person at work that day who knew that I even had a biopsy- Kristen Lautenbach- so I called her and asked her to come to my office. I told her and she hugged me and I cried… a lot. Thankfully, she said she would handle everything at work- she would find the student and make sure she had someone else to go with that day. She would handle canceling my patients. Honestly, I don’t have a clue what else she did… I just know she handled it. She was sitting next to me when I sat at the computer to google these new words that would become part of my vocabulary. And she wisely told me to stop. Her advice, which stuck with me through so much of my experience- “just be a patient”. It was against my initial instinct- I wanted to look this up and learn and analyze and figure it out. I needed to know facts. I needed some numbers. She knew better. She had me close my laptop. And she gave me a hug while I cried until my best friend came to the door.

Rob has always had an amazing ability to keep me calm. Seeing him walk into my space in that time of uncertainty for both of us was a different feeling. I’ve been hugging that man since I was 15 years old. But the hug in that moment carried more meaning than any other embrace we’ve had. It immediately reminded me that we were a team… we would get through whatever was about to happen. I am loved. I am supported. This guy is here to do it with me.

And then, I remembered that I had to call my sister. She knew I was about to return that voicemail to the dr office. She’s been waiting for me to call her back and tell her. She would know the second that she heard my voice. And she did. The conversation was mostly one of disbelief- on both sides. And ended with her saying she was leaving PA then and she’d be in Ohio in a couple of hours.

Rob and I left to go home for those couple of hours until the appointment. Just enough time to get some things taken care of around the house and eat some lunch (though I don’t think I ate anything). Olivia had plans to go to PA for the weekend, which we wanted her to keep. So I packed up her bags so she’d be ready to go. I set out some stuff for dinner, as my friend Carrie King Donnell would come to the house and be here for the girls when they got home from school- she would get them dinner then take them where they needed to be.

Two hours has never gone so fast, nor so slowly, in my entire life. Eventually it was time to go see the doctor- Trisha and Rob were with me in an appointment i’m sure none of us will forget. The nurse navigator came in first and handed me a bag with a pink pillow and breast cancer items and information- it was like a weird goodie bag that I got for having the diagnosis. It was full of random things that I wanted nothing to do with. The doctor eventually came in- straight faced as he read that pathology report out loud. He explained the terminology well and gave me a synopsis of my treatment plan… which included chemo. I had known several people with breast cancer who had surgery and radiation and was so hoping that would be my plan as well. There’s something about the idea of chemo- getting so sick (and looking the part) that is so upsetting. Skipping over some of the details here (because this really isn’t meant to be a novel), we finished up with his appointment and he was able to schedule me to see an oncologist at the same hospital right away. So we got my “breast cancer goodie bag” and headed across the street to meet the person who would save my life.

Dr. Rehmus- my oncologist. I vividly remember meeting her, too. We were sitting at a round table, but she pulled out two of the chairs, faced them toward each other and said “let’s talk.” We sat face-to-face for a few minutes while she gave me the overview of what was about to happen. I’ve heard that when a person experiences trauma, their cognition level typically reverts to about a 4th grade level. After this experience I can say that is definitely true. She was explaining cancer and my pathology in such simple terms so I could understand them… she did it perfectly. She was serious and smart, and I knew I liked her. She’s a no-nonsense kind of doctor and that’s what you need in this kind of experience. She is also extremely knowledgable in research, which I appreciated.

When the appointment was over, Rob picked up Olivia and took her to meet his parents in PA. Trisha and I were at our house- processing what just happened then planning to make the next hardest phone calls- to tell my parents. Let me say that as hard as it is to hear bad news, it’s harder to be the one who has to say it. To know that you’re about to cause heartbreak. To know you’re about to ruin someone’s day. It’s an impossible thing to do. Thank goodness Trisha was here- I made her do the hard part. She broke the news initially, then I talked to them and shared what info I knew. My brother wasn’t home, so I would try to call him again the next day. And that was enough for one night- time to wrap up this terrible day.

Dr. Rehmus had prescribed Ativan for me that night… and it was very helpful. It helped me to fall asleep which my body desperately needed. The next morning, there was a split second when my brain was awake but my eyes weren’t even opened yet, that I hoped it was all a bad dream. And just as quickly as that moment came, it was gone. And I was about to wake up in my new reality- as a cancer patient.


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January 17, 2017

January 17, 2017- the day of my biopsy last year. Remember when I said that a mammogram doesn’t hurt? A biopsy does. It’s not bad- comparable to a bee sting for the shot to numb the area. But it’s a sensitive area so it’s not comfortable.
Then they insert a needle instrument that grabs a microscopic piece of the mass and removes it from the breast. And they leave behind a tiny metal pin so that they know where they removed the piece from. It’s a quick procedure, but unnerving nonetheless. As with the ultrasound, I was trying my hardest to read the doctor’s face as she was doing it- looking for any eyebrow raise or head tilt or even a deep breath that would indicate if I was in the clear or not… but nothing. She was perfectly poker-faced in the nicest way. She had a calming voice that you’d imagine being the voice of the “nice friend” in a Pixar movie. She’s the perfect person for that job.

The results of the biopsy would come in 3-4 days- which meant either on Friday or Monday. I already had a follow-up scheduled for that Monday. The doctor gave me the choice to automatically wait until Monday follow-up to discuss the results in person. Or they could call me with the results on Friday if they came in early. Tough call- if it was good news, I’d love to hear it on Friday so that this weight would be off my shoulders over that weekend. But, man, if it was bad news I would not want to hear it over the phone on Friday. Remember the previous appointment when my surgeon said he was “optimistic”? That’s what I used to make my decision. I told them to go ahead and call me if the results came in on Friday… I wanted this over with so I could enjoy the weekend… at least that was the plan.


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This day last year…

And this day last year… (I warned you these posts would be coming).

It was a Friday and I was finally scheduled for my diagnostic mammogram and ultrasound. Cleveland Clinic/Akron General has a wonderful breast health center that coordinates all of these appointments, so that they can be done efficiently- which is very appreciated when you want information yesterday.

I had the mammogram first and it was not bad at all. Women friends- if you haven’t done one because you’re afraid of the pain I’m here to tell you to scratch that excuse off of your list. I wouldn’t even call it pain, just discomfort- and you can tolerate a few minutes of discomfort to save your life. Because I was “on the smaller side,” it ended up being more like a yoga session with bending and contorting different ways to get the clearest images of the mass (the mass was on the outer quadrant of the breast). But it was pretty simple.

Once the mammogram was done, they took me into the ultrasound room. First, let me say that the color of paint on the walls in that room is my least favorite color. Its was a tannish/mustardy/brown- probably someone’s idea of a nice neutral. Not mine. And now that I have associated the color with an unfavorable experience, I’m sure I’ll never like it even just a little bit. Anyway, the ultrasound tech quickly got me positioned and started the scanning. She showed no emotion AT ALL. I know that’s her job, and knowing that she probably suspected it was cancer I can see why she was so stoic. She said she got all of the images she needed and I just needed to wait there for the dr to review them. He would be in in just a few minutes.

As much as I tried to relax, I couldn’t. Was someone going to come through that door and tell me I have cancer? Or that I don’t? Or that I’m going to die in a few months? Or that I have a benign cyst? What if it’s bad news? Is it ok to cry right away? Rob had taken me to the appointment but was waiting in a room a few doors down. Who would go get him? Would I be walking out of here in tears like I had seen a woman do at my very first appointment? It’s amazing how many questions a brain can wonder in a short amount of time.

The song, “Turn Your Eyes Upon Jesus” was playing over and over in my head. My friend, Julie McKeand Black, had just sung it in church the prior Sunday and it was comforting to hear her voice in my head singing truth during a stressful time. Alone and nervous, I couldn’t help but muster up the cheesiest and most comforting “Jesus thought” I’ve ever had. I closed my eyes and pictured Him sitting there with His arm around me. It was so vivid that I leaned to my left just a tiny bit- like you lean in when a loved one puts their arm around you. I don’t know how long I was like that or what I looked like when the dr came in, but he did. And he did not have any answers for me. His exact words- “Sometimes we can look at an ultrasound and know for sure that something is cancer; and sometimes we can know for sure that it’s not. But in your case we cannot tell for sure either way.” Yep- inconclusive… BS… not helpful. Of course it would be. That’s what so much of medicine seems to be sometimes. Looking back, I know I was mad because I didn’t get the “all clear” that I wanted. Sigh.

My next step was to schedule a biopsy where they could do a pathological assessment of the tumor cells and know for sure. And that would be scheduled for the following Tuesday. You know what that meant- another agonizingly long weekend- waiting for the next appointment so that I wouldn’t have to worry about this anymore. I know, I know… in the big picture and relative to most other peoples’ experiences with diagnoses, it was actually happening very quickly. It was hard to be patient, as I still didn’t realize it was just the beginning of the longest year of my life.


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January 11, 2017..

January 11, 2017… I was so scared because I knew I had a lump in my breast but was still waiting to have a biopsy. Those days feel like eternity when you have to wait. But then my world stopped and my concerns were overshadowed by my friend’s sudden grief- for her daughter had just passed away. It was sudden and unexpected and shocking when I heard it. And my friend dealt with it with an amazing demonstration of grace and love that I admired so deeply (the kind that we think of when we read about Jesus). I cannot imagine the pain of losing a child… I am so sad for my friends who have carried that in their lives. You know who you are… and I pray for you often. It was a strange thing to go a funeral of a young child- so peaceful but so sad for us on this side of heaven. I remember her sparkly shoes and painted fingernails… striking me uncomfortably close having my own girls close to her age. Perhaps it put me in the right place mentally- about to deal with my own challenge that would never seem as hard as what I had just witnessed. Hug your babies a little extra tonight. And say a prayer for my friend- God will know who mean.  💕

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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.  🙂