Holding Space

With Shelly Vaughn


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Surfin’ U.S.A…

 

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October 11th was my dad’s birthday, my hedgehog’s birthday, and my half-birthday. That means I have just under 6 months until I’m 40. So… I’m excited to say that I’m squeezing in a special “Under 40” experience just in time!

Marquina Iliev-Piselli is the author of the book I shared in my last post. She is also the reason I have this cool opportunity coming up soon. During our first interview for the book, she mentioned a camp that she was a part of- Camp Koru. After talking with her last year, then applying and not being able to go, I’m happy to say that this year I am able to participate in a Surfing Camp for Cancer Survivors…. in Maui!

The camp is designed to bring together survivors who were diagnosed under 40- to teach them a new skill as they learn to accept their “new normal”. So in a few weeks I’ll be trying to surf in Hawaii with several other young survivors!

If it’s anything like snowboarding or water skiing, I’ll be horribly- stiff, awkward, and falling all the time. But I’ll give it a try and see how it goes. It took quite a bit to get to this point. The timing had to work out around my other surgeries. I had to acquire enough PTO again at work. I had to apply and wait for a spot, then get my medical clearance to go. Finally, it’s all working out and I’ll be heading to Hawaii in a few weeks.

I’m extremely excited, but also very nervous because I’m doing this alone. They don’t have camps for “survivor spouses”- though they totally should since that takes just as much courage, strength, and grit to live through. I don’t know who will be there, what they will be like, or how we’ll connect. I’m sure it’ll be great, but this is so far out of my comfort zone I can’t even see it in the distance.

What an opportunity, though, right? Maui, I’ll see you soon.


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It’s October, so get out your pink. I’ve been so hesitant to embrace the pink in the past- I think because I feel guilty that other people don’t get a whole month of recognizing their challenges in life. And I was so determined to not let my experience define me. But the further away I get from the shock and fear of what I went through, the more I can see the value in acknowledging the importance of the challenges and celebrating my cancer-free life.

Today was “wear pink” day at work. I almost didn’t wear my shirt because it said “Survivor” on my back. So I wore my work backpack for a lot of the morning to conceal it. Then at lunchtime, we gathered for a picture for all the employees who wore pink to work. And there, one of my closest survivor friends, Melissa Samulak greeted me with the best hug I’ve had in a while.

There are a lot of really crummy things about 2017. But there are at least as many, if not more, wonderful things. One of them was meeting this woman who would fight her own battle shortly after me. I still cannot clearly explain what it feels like to go through cancer treatment while working at a very public place. But the comradery and closeness of walking alongside someone whose experience is similar is something very special. After catching up with her and seeing her beautiful smile, I was reminded that being a survivor isn’t something that should be covered up by a backpack.

Thanks to everyone who wore pink today at work. And to everyone wearing pink at their own workplaces this month.

I’ve been a little absent from posting for a while. Trying to be online a lot less and not over-thinking everything in life. But I do have some good things to share, and I think this month is a good time to restart the blogging. Stay tuned…


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Mile 12

A half marathon is 13.1 miles. I’ve run it two times in the past, and both times I thought mile 10 was the worst. By mile 10, my knees were screaming at me to stop. Not because I have an injury, but more like “can we please stop doing this same repetitive motion that we’ve been doing for two hours?! Enough already.” (Kudos to everyone who can do a full marathon, by the way. Especially to Rob, who is in the middle of training for one and so far- killing it. )

In the past, I’ve thought about why 10 was the worst. It was painful and hard (as expected) but for some reason miles 11-13 didn’t seem so bad. I think for those miles, I was close enough to the end that the pain didn’t matter. I was almost done.

Well, in this experience, I’m heading into mile 12 of this race I didn’t sign up for. 10 would have been November’s surgery because I was nearing the end but it was so painful. I’m going into 12 with one more surgery on Friday, then it’s just healing up to cross that finish line and be done with all of this.

Friday is my exchange surgery. They’ll take out the expanders and replace them with implants. The expanders are hard with metal in the back that is stitched inside my skin. Uncomfortable all the time, but I’ve gotten used to it. But now, after Friday, they should actually look and feel more normal. No more strange metal parts in my body. (Whoa- I just realized that’ll be the first time since this started I’ll be metal-free! I had my port placed, a copper IUD, then the expanders. The first two have already been removed… and these will be the last to go! Well, I do have about 50 permanent staples under my right arm from the original mastectomy, but I won’t count those right now because I’m excited.)

Anyway… it’s time for “squishy boobs” and I’m so excited. It will be an outpatient procedure on Friday so I’ll be home that evening. The doctor said I’ll be bruised and feel like I got beat up. But should feel good enough in 2 weeks to return to work and totally healed by 4 weeks.

Mile 12, people… here we go… so close….


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Pray For Lea

Lea is a sister in Christ. A mother, wife, and fellow breast cancer survivor. Though I knew her briefly many years ago, we reconnected in 2017 when she was diagnosed just after me. We’ve shared doctors and specialists, our radiation schedule was almost identical- so much that I would see her name on the list of patients in the radiology suite right after me. Most recently, we’ve seen each other with our families at Stewart’s Caring Place where we’ve gone for their family Halloween and Christmas parties.

Yesterday I heard that she is not doing well. Her cancer has metastasized and is in her bones. Her prognosis is about 5 months. 5 months, friends. I cannot imagine hearing that kind of news. My heart is broken.

Please pray for Lea. I heard that her spirits are up right now, but she is in pain and having trouble walking.

And, only after you’ve prayed for her and her family, I’m asking if you could pray for my heart to have peace with this. First Linsy Biege, then Jennifer Johnston, then Laura Ritter Allio… they are all young women who I’ve met since 2017 who are no longer here. I don’t want this to happen to another one. I can’t help but feel scared. This is the reality of living in the world of that terrible disease. I hate it.


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Spring Update

I think this has been the longest I’ve gone without posting an update. Sorry, everyone. That also means there are probably a lot of random things to talk about, but I’ll keep it as brief as possible.

Physically I’m doing really well. At the end of January, my surgeon stopped adding saline to my expanders because my skin won’t stretch anymore. So the size I am now is about the size I’ll be forever- a solid B! I’ll take it!

As planned, I have to stay at this point for 6 months then have one LAST surgery to replace the expanders with implants. So that surgery will be on July 19th. That’s just about 3 months away. I can hardly believe that I’m just 3 months away from the last step of this!

I’m gradually getting used to this body now. My chest and back are uncomfortable all of the time, but usually not painful. The hormone blocker that I have to take for at least 8 more years still causes joint pain, so I feel sore and stiff a lot. I’m trying to stay as active as possible to help with that.

In the last few weeks:

– I had a follow-up ultrasound to monitor the reactive lymph node under my armpit to reassure me (again for the 4th time) that it’s not malignant.

– My radiation oncologist officially discharged me from her care.

– My general surgeon said, “although you’re the highlight of my day, I don’t need to see you anymore”! (Since I have some attachment issues, I asked if I could come back in a year just so I can hear another person tell me I’m healthy.)

– The lymphedema on my right arm/hand is not too bad. The reconstructive surgery broke up some of the scar tissue that was impeding the lymph flow. So now it’s not nearly as swollen. Three of my fingers are large and my arm gets tight and uncomfortable sometimes, but nothing that a night of wearing my compression sleeve/glove can’t help.

Personally, life continues to be a constant mix of laughs, joy, frustration, peace and two pre-teen girls. Rob is busy training for the Akron marathon in September. The girls are busy with school, dance, and friends. We’re getting out to enjoy the nice weather. Work is going well but busier than I’m used to.

I’ve had a couple of sweet days with extended family that I’ll always remember (Toya Groves and Pat Smith- thanks to both of you for two special days.) I’ve also been spending some unexpected time with friends from home- time that is always cherished.

All in all- life is good. Some days the sun is shining and we feel the warmth on our skin. Some days it’s harder to feel it, but we know it’s there because we see the light. One of the greatest blessings we have is the light from the son.

Happy Spring.


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Miles To Go…

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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.

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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.