“Holding space for another person is incredibly profound. When you hold space for someone, you bring your entire presence to them. You walk along with them without judgment, sharing their journey to an unknown destination. Yet you’re completely willing to end up wherever they need to go. You give your heart, let go of control, and offer unconditional support. And when you do both of you heal, grow, and transform.”
I’m writing this on the plane, flying home from an amazing experience at Camp Koru in Maui. I should be sleeping because when we land today it’ll be tomorrow at home. But I’m still riding the wave of excitement so I wanted to share it.
I flew alone to get to camp- to meet 15 strangers who have or had cancer, along with 5 counselors (3 of whom also had cancer.) It was out of my comfort zone to do something so big, but be so alone. Turns out this camp was exactly what I needed at exactly the right time.
We spent 5 days in Maui. 4 of them were filled with surfing and paddleboarding lessons. There’s something about the ocean that spurs so many metaphors- changing tides, ocean waves that have traveled so far to meet you in a moment, persevering through rough waters near shore to get to calmer waters beyond it, waiting patiently out in the water for the perfect wave to come- knowing it’s worth the wait. See- SO many metaphors. They were swirling in my head all week.
The challenge of learning to surf meant that my body got beat up quite a bit. The rocks scratched our legs so much that when we would get out of the water the “camp doc” had us line up for the “peroxide shower”… where she squirted peroxide on everyone’s legs. Paddling out in the ocean made our arms so sore that it felt nearly impossible at times (especially for this body that doesn’t have lat muscles anymore). My knee was so banged up and bruised that it swelled up for most of the time there. And it was worth Every. Single. Ache. Because in the end, I was standing on a surfboard in Maui, riding waves with some of the most meaningful new friends in my life.
What was most beautiful about camp was the natural comradery of being surrounded by other survivors. The ease at which “cancer talk” happened so organically in conversation was surprising to me. A group conversation would easily flow from learning each other’s favorite hobbies to discussion about how we each handled bathroom accidents during chemo. And instead of the typical response of “awe- I can’t believe you had to deal with that”, it was laughter at everyone being able to relate; and seeing who had the most creative solution to that particular issue. We would talk about the beautiful ocean water and then seamlessly transition to which remedies work best for long-term side effects. It felt so natural and easy to talk to these people who knew me for such a short time, but already understood me so much.
On Tuesday night, I had an amazing conversation with a girl, “Huck,” who would soon become one my most important friends. She is younger than me, married without children, living with chronic thyroid cancer. I had noticed the first day at camp that her medicine took up a large portion of her packed items. At that evening’s campfire talk, she mentioned that her faith helps her get through hard times. So I knew I wanted to ask her some deeper questions about faith when we were alone. I’m so glad that I did.
Why I have not heard these words before is beyond me. Maybe I haven’t been asking my questions clearly enough. Maybe people have told me this and I just haven’t “heard” it until now. Or maybe no one has given me such a clear answer before. I’ll try to explain…
I had watched the movie “Breakthrough” on the plane ride to Maui. It was a heartwarming movie, but I got hung up on the fact that if we credit God for answering prayers when they are answered the way we want, how do we explain and (maybe more importantly) find peace when prayers are not answered the way we hope.
In previous conversations and readings, when I’ve asked why prayers aren’t answered, it inevitably leads to a response that “prayers are answered, just not always the way we expect.” Then THAT always leads to the same dead end in my mind of why we bother asking for anything if it’s all going to work out according to God’s will anyway. I have struggled with understanding the “why bother” side of praying for specific things. (Side note: I do see the value of prayer drawing us in closer relationship with Him, but that’s not where my hang up has been.) Remember, I’ve lost two very close people to cancer, so it’s hard for me to accept the “unanswered prayer” response. I’ve also, obviously, been healed from the disease which complicates my brain’s attempt to process all of this.
That’s when Huck’s wisdom hit so hard that I was speechless. This is a woman who has chronic cancer, 8 years since diagnosis, unable to have children of her own. She shared that she prayed to be cured for several years. And for a while assumed it would happen- in God’s time. Then she realized what would bring her peace… and has brought me peace as well. She prays for God to guide her heart to have desires that align with His will. God is more concerned with our spiritual healing than our physical healing. That spiritual healing comes when we are at peace. And that peace comes when we are desiring what He is planning anyway. Mic drop.
Ok, I’m being dramatic. But it really did hit me that hard because it made so much sense. I feel like I finally understand how to navigate the confusing maze of “why even pray” and “God’s will is always going to happen anyway”. I went to bed Tuesday night with such a sense of peace and understanding. Pray for our desires to align with His will. Then we have peace because whatever happens is what our hearts are ready for.
Wednesday, in the middle of our week, turned out to be one of the most special days of my life. Our counselors surprised us with a trip to do outrigger canoeing with native Hawaiians. The two natives who led our group were elders who are held in high regard in Maui. They showed us how to paddle the outrigger canoe as a team, while singing chants in Hawaiian along the way. I was enjoying the songs and felt very connected to my team- out on the shores of Maui singing songs and gliding through the water because we were a team of warriors. Suddenly the elder changed the words of the song we were singing to the English version. You know what it was?… “This is the Day that the Lord Has Made.” A favorite hymn. I couldn’t believe I was chanting a worship song on the ocean and didn’t even know it until then. A while later we were doing a different chant in Hawaiian, and he again eventually switched to the English translation- it was “Let the Sun Shine In.” I’ve been listening to Frente’s version of that song at least once a week for the last 3 months on the drive into work in the mornings.
So we finally navigated around a small rock wall near the shoreline to a cove. The elder explained that the purpose of the rock wall was to help catch fish and food for the island. Our purpose there was help build up the wall- collectively pick up some of the rocks that naturally got knocked over or worn away and pile them back onto the wall. This would help the natives for catching food for their families. I felt honored to be invited to help build something that has been so important to these people for centuries.
After we worked on the wall for a bit, they asked us to circle up in the shallow water. The elders stood in the middle, filled a coconut with water, and sang unfamiliar words that wove themselves into my soul, settling deep in a comfortable spot inside my heart. I closed my eyes, tears rolling down my cheeks as their words moved me. They walked around to each of us, blessing each one individually as he looked into our eyes, dipped a lei into the water and blessed me with it on my head, shoulders, and legs. It is impossible to put into words what happened and how it made me feel. But I truly felt like I was healed- physically and spiritually. I had my answer about prayer life from Huck the night before. And now had this incredible feeling of being blessed and healed in the waters of Maui, through words of a different language that meant the world to me.
Side note: As I talked to Huck afterward about how moving that ceremony was, she said that she recognized “Jesus Christ” being said several times in the elders’ chants and songs. So in the middle of this crazy emotional meaningful jumble of beautiful words, they were actually praying to Jesus.
So I walk away from this week feeling healed- spiritually and physically. I sure hope the physical healing lasts for another 40 years. But I know that regardless, the spiritual healing is what is more important. That comes from the peace of understanding I can pray for my desires in life to align with His will. If I desire what is already part of His plan, I really can’t go wrong… am I right?
Since my diagnosis in 2017, I have thanked God for the medicine to kill cancer and for surgeons to “fix” me. I have been in awe at my body’s ability to heal. But I have not thanked Him for this body that betrayed me. Honestly, I’ve been bitter toward it for two and half years. This morning- my last morning waking up on a bed outside on a Maui beach to a beautiful sunrise- I closed my eyes and, without hesitation, prayed thanks for this body. The moment I did, I was brought to tears realizing that I wasn’t bitter anymore. Which meant that for the first time since 2017, I felt truly healed- inside and out; spiritually and physically; my heart and my soul…. Mahalo, Maui.
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.
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…
28 days= surgery recovery.
Day 29= run a 7K. 🤦🏼♀️
Yes, that’s a face palm emoji because my legs are asking me right now WHY in the world I did this. The timing wasn’t my choice, obviously, but I couldn’t miss the coolest run of the year.
The Shawshank Hustle starts and ends at the Ohio State Reformatory, where “Shawshank Redemption” was filmed. This year, for year 5 of the race, they had THE coolest medals- a bible that actually opens up with a removable rock hammer inside! I couldn’t pass up the chance to earn that! Also, everyone was randomly assigned a race shirt that was either a guard or an inmate. 😆
Anyway, the race went well and was a lot of fun. We got to tour the reformatory afterwards, too. Melanie Williams, it’s always fun to hang on race days with you. Thanks to Lisa Gonidakis and Jessica Eckhart for helping with the girls so we could do our thing.
This race happened the day after I was “ok” to return to normal activities. In my mind, it commemorates moving forward from here on. I know I always read too much into everything. But important milestones should be marked with important events- like being chased by a warden out of a prison from one of the best movies ever! (I beat the warden, by the way! 😆
It’s been 2 weeks since surgery and I’m healing really well. It was more extensive than I had planned for, but everything seems to have turned out ok.
The plan was to take out the expanders and replace them with permanent implants. Then she would do fat grafting to take some fat from my belly and put it around the implants so that they looked natural and symmetrical.
She started with my right side, which turned out to be more difficult than expected because of the amount of scar tissue from radiation. Since the tissue was tight and scarred, she needed to add more fat around it. And then had to match that on the left side. So instead of just belly fat, she took a little bit from everywhere- my thighs, hips, belly, and even the side of my knees!
This means that I had 19 small incisions and stitches all over me and a ton of dark, ugly bruising. I had to wear a pretty awful/ridiculous compression garment inserted with silicone pads all over my legs and torso for a week to keep the bruising and swelling down. Rob had to help me get in and out of them- like I said- “ridiculous”.
After a week, I graduated on to wearing Spanx and a medical compression bra. I wear these 24/7 for 4 weeks. Not the most fun, but better than last week. My bruising is getting much better and I can move around pretty well if I take it slowly. All but 2 of my stitches are now out. I also started PT again, and will do this again for several weeks as I heal. I love my PT, so I’m happy to start working with her again.
I’ve had an unexpected emotional (or unemotional) response to this. I haven’t been as excited as I thought I’d be… maybe just because recovery wasn’t quite what I anticipated. I imagined a quicker recovery and quality time with the girls. I barely remember the beginning of the first week, and then it felt like the world suddenly moved on and it was time for me to be ok. But I wasn’t.
I was lazy just lying around watching a lot of tv, when I felt like I should be outside doing summertime things with the girls every day. But even sitting outside was too hot (especially with all of these compression garments under my clothes).
Then this past week, Olivia’s friend invited her to a 3-day “outdoor survival challenge”, where the girls have to set up a tent and stay outside in the backyard for 3 days with no electronics. It’s amazing. This is the second year she has done it and she loves it. (I do, too. Thanks, Sierra Hampl.)
Olivia’s time at her friend’s allowed Liana and I some solid, relaxed time together. So, we spent a few days designing and planning a new platform-ish bed for her. She’s been asking for it for years, wanting a bed like in the show “Good Luck Charlie.” It has morphed into her own version of it, but it’s coming along. Thanks to Rob Vaughn for all the heavy lifting of pallets and platforms. And Michael Clay Donnell for helping with materials from our church. I’ll share pics when we’re done if it turns out well.
I found that setting a goal with my daughter and feeling productive at the end of the day does a lot for my mental state. Although I can’t be out swimming, playing sports, and taking them to the park, at least I’m doing something for my kids… well, one of them. The other gets “goat yoga” next week.
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….
I’m writing this from the hotel room in Salt Lake City- our last night of a 10-day vacation to Yellowstone and The Grand Tetons. With some amazing planning by Rob, this has been the trip of a lifetime for sure.
We saw every bit of wildlife imaginable including 9 moose yesterday, 10 bears, coyotes, elk, bison, eagles, fox, pronghorn, owls, and even a wolf eating a baby bison (which had died of natural causes). The scenery and unique geological features here are outstanding- leaving us in awe of the Creator behind such design.
Rob and I came here before we had children, but it was especially nice to see the wonder through the girls’ eyes this time. We knew we wanted to bring them here when they got old enough because it’s so gorgeous with so many unique things to see. They made me proud with their hiking skills (though not so much if you actually told them they were “hiking”) and with their excitement for wildlife. But 10 days without a break meant a lot of fighting in the car, too. Seriously though- you can only tell someone is looking at you if you are also looking at them. How is this still an argument!?!
All in all, it’s been an amazing week. I wonder what the girls will remember and tell their children about someday. The cold rafting trip down the snake river? “Moosefest 2019” (our nickname for when we saw all the moose in one evening)? The wagon ride to a mountain cookout?
Digging for fossils? Earning their Junior Ranger badges in the Tetons? Probably the free cookie at the hotel room tonight. Whatever the case, I hope the trip has sparked an interest in them that will never fade. I know it never will for me.