Holding Space

With Shelly Vaughn


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Survivor

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My all-time favorite class in high school was Language Studies with Dr. Wansor. I loved it! Studying words and semantics and how it affects people- yes, please! I could’ve sat in that class all day. It may have been the only text book I actually read my senior year. (Wait- I think I also read my Sociology book- that was another good one.) It’s no surprise that I got a degree in a field where I can study language for a living. It’s also probably why I get hung up on semantics sometimes… sorry about that.

Today is “National Cancer Survivors Day”. I’ve never heard of it before (and I kind of think we should get free ice cream or something today, right? I mean- National donut day, coffee day, mother’s day- you get free stuff on those ones.) Anyway, I think it’s the perfect day to share my thoughts on the word “survivor”, and a few other definitions within the cancer world.

A “survivor” is anyone diagnosed with cancer. Any person, any stage, any cancer- from the moment of diagnosis you become a survivor. Because unless/until you’re no longer here on earth, you are surviving. It’s not a term used just for those who no longer have the disease (which is how most people use it). So yes, the person living with stage 4 cancer is a survivor. The person just diagnosed and given a few weeks to live- they’re a survivor, too. And the 38 year old woman in Ohio who continues to show no signs of the breast cancer that was removed from her during a mastectomy last summer- she’s a survivor as well.  😉

Another term that I learned last year- “previvor”. These are women who have been identified as having a high risk for breast cancer (usually because they were found to have a mutation of the BRCA 1 or BRCA 2 gene). They are women who know that their risk of getting cancer is so high, that they choose to have a mastectomy and often hysterectomy to prevent ever getting the disease. Most of the time, these women get immediate reconstruction after their mastectomy. These women are brave- they are doing something very significant and serious in hopes of never hearing the words “breast cancer” from their doctors. In case you need an example- this is Angelina Jolie. She was brave with what she did and I never want to minimize that. But she did not have breast cancer. And it’s offensive to those who actually have cancer to compare them to her (or other previvors).

And while we’re thinking about different stories… I’m going to try to explain how things are perceived by a person on this side of the disease. As my doctors have said- “every cancer is different”. There are so many different kinds of breast cancer with different stages and pathologies. Your kind of breast cancer dictates your course of treatment- whether you’ll have chemo, radiation, surgery, or which combination of the three.

This means that some women don’t need chemo, some don’t need radiation, some have a lumpectomy and some a full mastectomy. Of those who have mastectomies, some choose to “live flat”, some “live flat” against their choice, and some have immediate reconstruction. So it’s quite a range- from women who have a mastectomy and immediate reconstruction (many people don’t even know these women have had cancer) to those who have all three treatments and no reconstruction. The experiences are drastically different. After living through the extreme side of the spectrum, I apologetically feel like women who are on the other side of where this treatment pendulum swings are lucky. It’s not a feeling I’m proud of. But it’s real. When you’re talking with someone going through treatment, remember that it is not helpful when you compare their experience to someone who didn’t have the same treatment (especially if it’s perceived as “easier” in some way).

But here’s the thing I always come back around to: every woman facing breast cancer, regardless of the extent of their treatment, has been dramatically shaped by their experience. It’s most likely the “biggest” thing in their life (or at least very high on the list). It has likely affected their relationships with friends and family. Every one of them has faced mortality and lost the innocence of assuming a long life. And every one of them lives with the fear of recurrence- whether they think about it constantly or occasionally. Whether they acknowledge it or distract themselves from it. They are different than they were before cancer; living a life forever-changed by that disease. Their sense of comfort was broken by one word. But brokenness can be a beautiful thing- because it allows light to shine through.

Today I want to acknowledge and celebrate the light shining through every cancer survivor. Sending love to you all.


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Happy Mothers Day

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Pink… so much pink. I’m not opposed to the color in a general sense. But when I had breast cancer I developed a particular distaste for it. Everything had a pink ribbon on it!

Why did some people embrace this so (seemingly) easily? Why do some women get the diagnosis and immediately wear all of the pink ribbon gear they can get their hands on? Why did I cringe inside when I saw it? How could some women get pink ribbon tattoos and I could barely even wear a plain pink shirt without feeling a little sting? I think it has something to do with the extent that people identify with (and embrace) what they are going through. Clearly, I didn’t do either of those much at the time.

Today is Mother’s Day 2018. A day that I get to really celebrate my role in life as mommy to the two best girls I know. I was able to smile and appreciate it with a sense of joy that’s deeper than other days- especially as I think back to how I felt (physically) on this day last year during chemo. Rob planned a perfect day today and I loved it. The girls still fought in the car, I overdid it on our trampoline, and I didn’t get any of the laundry done that I had planned on. But “perfect” doesn’t mean that things don’t go wrong… I think it just means that things turn out ok.

You know how I know things are turning out ok?… Today I intentionally and proudly wore pink.  🙂


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Pink Sisters

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This weekend turned out to be pretty sweet! I was lucky enough to meet this woman, Sally Gary. She is a Christian and fellow breast cancer survivor. In fact, her treatment has been just about a month behind mine. Some women refer to us breast cancer survivors as “pink sisters”. It’s cutesy, and comforting to some. I don’t know how I feel about it. I’m not one to love labels anyway… and I do try to avoid defining myself by my breast cancer experience. But I suppose it’s a simple way to show comradery and connectedness during a challenging time.

Our church hosted Sally’s visit which included 2 nights of dinner and some excellent, loving discussions at church on Sunday. She’s an amazing woman and if you ever have an opportunity to meet her or hear her speak you should do it without hesitation. She’s an author, too, if you’re up for some meaningful reading in the future. Hearing her speak about sensitive topics within the church was something I have been craving as a Christian. I’m so thankful to be a part of a church family who welcomed the discussion. But even more striking to me was seeing how she has gracefully accepted her cancer experience and not let that overshadow other parts of her life. And she is one heck of a listener. Though she does not have young children herself, she seemed to understand how deeply my role as mother has affected my thoughts and actions through treatment. So I guess if we are choosing labels here, I do proudly call her a “pink sister”; lovingly call her “sister in Christ”; and humbly call her a “friend”.


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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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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.