Holding Space

With Shelly Vaughn


Leave a comment

Miles To Go…

44737062_10217586899489135_953876901745655808_n

I could probably write a book just about my experience with the Akron Marathon from a couple of weeks ago. I could, but I won’t. I’ll instead try to summarize and hit the highlights in a post here.

Shortest possible summary: It was physically really hard, but emotionally amazing.

Best attempt at a real summary:
I’ve participated in 9 of these races- 7 relay teams and 2 half marathons. This was my worst (slowest) and my best (because I did it). It could’ve easily been just another race, if there weren’t sweet moments all through that day that made me smile:

1. It’s hard to sleep the night before a race… it always is. But guess what time I woke up and looked at the clock- 3:54 am. Guess what my grandma’s house number is- 354. Thanks, Grandma. 🙂

2. My tattoo on my foot says “Miles to go…” So our team name was “Miles together.” I ran the race of my life with the girls who have been my friends since middle school. Together, we can get through anything- like cancer and marathons.

Trisha ran the 4th leg of the race and I ran the 5th leg. Which means she handed off the slap bracelet to me. It’s not quite as seamless as a relay handoff in the Olympics. But when your twin sister is the one right before you, it requires a quick, tight hug in the middle of the road. An embrace I won’t forget- with my mom, our daughters, and my cousin, Terry, watching and holding the most encouraging signs ever.

My lucky number is 11. Guess what our team’s pace was- 11:11!

3. The shirt I wore during the race said “survivor” on the back. At one point in the race (shortly after “cardiac hill” for those who know the race route), an older man ran up beside me and smiled. He pointed to his own shirt that said “Living With Breast Cancer”. He simply said “what kind did you have?”… and that started a simple but inspiring conversation during the hardest part of my hardest race. He said that his wife has stage 4 cancer and he runs in support of her. As a reminder to LIVE with whatever we’re given. After a few minutes, my breath was getting heavier while his was not. I told him I needed to walk for a few minutes and he graciously thanked me for inspiring him to finish his marathon. This guy, nearing the end of a 26.2 mile race, was inspired by this girl walking partway through her 5 mile race. If I would ever see him again, I would tell him how much HE inspired ME. I am so grateful that he literally crossed my path during the race.

4. Those of you who knew my friend, Allie, know how much she took care of herself and her body. She ran a lot and completed the Akron Marathon when she was healthy. When she was fighting her own battle with cancer, I bought a headband that says “Livestrong Armstrong”- the headband I have had with me for every race since then. Even if I’m not the athlete she was, I still think of her all the time when I’m running.

There are thousands of people who participate in the marathon. And there are shuttles that take people to different relay legs. As I walked onto the shuttle to take me to the start of my leg, I immediately heard someone call my name. Sitting right across from me was Brittany Armstrong. Brit is my friend, a sister in Christ, and the mother to Allie’s daughters. Brit eventually married Allie’s husband, Adam, and somehow completely gracefully stepped into huge shoes. I cannot imagine the challenges that their family has experienced, but I know that the situation was prayed for by so many people- especially Allie. Seeing Brit that day inevitably made me think of Allie… a lot. I felt her presence in a way that’s hard to explain without sounding totally strange. I have a unique understanding of some of the thoughts that my friend surely had about her husband and daughters before she passed away. Which makes me also have a new appreciation for the beautiful, healthy runner who is raising those precious children and loving her husband the way that would make Allie smile.

And guess who I kept seeing during my actual run even after we said goodbye at the shuttle- Brit! We ran the same leg of the race. I would pass her, she would pass me… and that happened quite a few times over the miles we ran. I saw my friend, Brit, and I thought of my friend, Allie. And both things made me thankful.

5. The last best memory of the day- racing down the finish line. As I probably could’ve predicted if I thought much about it- my sister and teammates screamed loudly along the sidelines with high-pitch squeals of excitement and encouragement. But just before I got to them- there was Rob. Cheering for me during one of the most symbolic moments of my life. His strong voice rising above the hundreds of people along that finish line. I saw the smile on his face and wasn’t sure whose was bigger- his or mine.

You see, the race ends in the Akron baseball stadium with a champion finish line. All of the spectators fill the stadium seats. But runners are allowed to stay on the field and cheer on the finishers from the field. The week before the race, Rob decided to join a relay team. I didn’t realize until he mentioned that he did it so that he could be on the field to watch me finish. So sweet, right?! And I’ll be forever thankful that he chose to do that because his high-5 along that finish line was one of my favorite ever!!

Lots of details to cherish. Lots of joy to be felt. Lots of life to be lived.

44495412_10217586900129151_1828945598900862976_n44615246_10217586901209178_3051650258959335424_n44617404_10217586902369207_911852944561799168_n44621126_10217586899609138_5088006764956221440_n44677313_10217586900369157_4075103792654188544_n44694776_10217586901889195_5764574146843377664_n44757108_10217586901449184_3029793144620187648_n


Leave a comment

Lymphedema is no fun…

Lymphedema is no fun. I did everything I could to prevent this, but it happened.

You see, during my mastectomy I had 8 axillary lymph nodes removed (the lymph nodes near your armpit). When breast cancer spreads, it goes through the lymph system. So part of the mastectomy procedure was to remove the lymph nodes closest to the breast to make sure all of the cancer was gone.

But lymph nodes help to regulate the fluid in your body. Specifically, the axillary ones drain any fluid that builds up in your arm/hand. With part of this system removed, the risk of this kind of swelling in your arm increases.

To prevent it, I’ve been working with a physical therapist since right after surgery. I’ve followed all the rules- not carrying anything heavy on that arm, not restricting flow on that shoulder with bra straps or purse straps, avoiding hot baths and hot tubs, and making sure to wear my lymphedema sleeve during activities. I’ve also done lymphatic massage which is meant to manually stimulate the lymph system and encourage fluid to move adequately.

And yet… three weeks ago… I woke up with a balloon hand.

My arm has been fine, it’s just my hand that’s swollen. I thought it was a fluke and that it would go away in a few days. I’ve still been going to PT to help, but it’s just not getting much better. My surgeon even ordered an ultrasound last week to rule out a blood clot. Thankfully, it’s not a blood clot. But that means it’s definitely lymphedema.

The bad news is that once you have lymphedema it never “goes away”. So I know I’ll be dealing with this forever. But the good news is that it should lessen with continued therapy, a custom compression glove I will pick up this week, and special wrapping (7 layers of stuff) that I have to do at night time.

While it’s this swollen, I can’t close my hand enough to hold a pencil so it’s hard to write. I also have some trouble opening jars and grasping door handles. And it’s a good thing I have no reason to need to make a fist because that’s definitely not happening with these sausage fingers.

I’m praying that this improves in the near future and that I can stop looking at this as reminder of a damaged body. I want to see it as another opportunity to appreciate our miraculously designed bodies. We really are the products of a masterful artist. With firsthand experience of issues that happen during “breakdowns”, I can appreciate the amazing synchrony when all of our body systems work together the way they were designed to do. It really is amazing. But honestly, sometimes, I just don’t know if I need THIS MANY reminders of it.


Leave a comment

Taking Back July 26th

As my friend put it: Today I’m taking back July 26th.

This was the day of my surgery last year when I got rid of cancer but had to sacrifice a big part of my femininity. So I have mixed feelings about last year. But not this one.
Today was great.

I had a consult with a different plastic surgeon who I LOVED! She’s a female and I felt so comfortable with her. For as hard as reconstruction will be, I’m confident in working with her through it all. (It won’t be for several more months… I’ll keep you posted.)

To top off the night, in order to really take back today and remember it positively, I got a new tattoo! The phrase is from the poem I remember my dad reading to us when we were young. And it’s in my mom’s handwriting.  ❤️ I’ve got “miles to go” on these feet- with cancer behind me and God out in front.


Leave a comment

Survivor

34137622_10216481456493751_6681534889851879424_n

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.


Leave a comment

Happy Mothers Day

32643466_10216326664784055_2113562593296646144_n

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.  🙂


Leave a comment

Pink Sisters

29432937_10215886609102938_6482969594417049427_n

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”.


Leave a comment

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…

29213954_10215846207732929_5798532366336361104_n