The Joy of Participation
I recently found myself tubing down a river in the Great Smoky Mountains. Three families met up at the start of the course for a Sunday afternoon of gentle floating togetherness. Drifting on an innertube down a flowing river current is a delightful, relaxing way to spend time with friends—we jumped on the invitation.
But if you’ve ever tubed, then you know: The river has a mind of its own.
Practically as soon as we all loaded into the water, the current took my friends away. Meanwhile, my tube drifted over towards the bank. I spun a few circles and then got stuck by the trunk of a fallen tree. Faster currents pushed the rest of our party further downstream.
I wasn’t even five minutes into the journey, and I was already left behind and alone. Well, I exhaled: This might be a long trip. I laid my head back and tried to relax.
After drifting solo for a few minutes, I rounded a bend and saw my two friends up ahead. They had pulled over and anchored themselves into the edge of the river, waiting for me. It turns out that I wasn’t alone after all. Even amid the group chaos, they noticed when I fell behind and stopped for me.
What do you know—the river carried me right back to my people.
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Ty and I flew out to MD Anderson in Houston about a month ago. We intended to get second opinions on Inflammatory Breast Cancer protocol regarding surgery options and radiation.
Quick recap: When my cancer recurred within weeks of my double mastectomy surgery, we discovered that this cancer is actually an uncommon brand of breast cancer called Inflammatory Breast Cancer (IBC). With IBC, cancer invades the lymphatic fluid and the dermal layer of the skin as well as the breast tissue. It’s aggressive and it’s rare, accounting for 1- 5% of all breast cancer cases. It usually affects women under the age of 45.
MD Anderson has one of three IBC Clinics in the country. They have a team of doctors specializing in this disease, so patients from all over the world travel there for treatment.
I’m not going to bore you with all the ins and outs of our medical trip to Houston, but I do have a few takeaways I can share here:
First, I had a biopsy while there, and my lymph nodes on the opposite, unaffected side are positive for cancer—at least some of them. This was disheartening.
Second, after multiple appointments, one thing became clear: I need to be treated in Houston. There isn’t a way around it. This requires a team of IBC specialists. As one of their doctors told us: Most medical professionals will see a handful of IBC patients in their career. I saw three before your appointment today… IBC is what we do.
The plan is coming together: I will have to live in Houston for 3-4 months. Right now, it looks like I’ll have surgery in December. A Surgical Oncologist will remove a large area of skin from my chest. Because I have no breast tissue and no extra skin from a breast, this will leave an open wound on my chest with no way to close it up.
We can’t do a skin graft because I’ll undergo radiation next, which would kill all of the delicate, fresh new skin and open the risk for infection.
A Plastic Surgeon will come in next, (same day; same surgery) and will close the wound using skin and muscle from my upper back, hinging it around toward the front of my chest (called a LAT flap), or he’ll remove my lower tummy fat (ahem… yes, I’ve got some to spare), skin, and blood vessels and place them onto my chest to close it up (called a DIEP flap). The surgery is likely to last 10-12 hours, depending on their approach. To be clear: the plastic surgeon isn’t building boobs—just trying to close a wound on my flat chest.
It sounds like a crazy mess, honestly.
Full recovery for a surgery like this is expected to take 5-6 months, but I’ve got to start radiation as soon as possible. We can’t give cancer cells a chance to grow or move like last time. I’ll have my surgery—including 4 weeks of post-surgery recovery—in Houston. Assuming all goes well and I’m healing up nicely, we’ll start radiation 4-5 weeks after surgery.
Radiation for Inflammatory Breast Cancer is a twice-a-day treatment. Because IBC is such an aggressive, fast-moving cancer, this approach gives the cells less time to multiply or spread in between treatments. This rapid-fire radiation methodology has shown historically lowered recurrence rates in IBC patients.
When radiation is finished, I’ll be ready to come home. In theory, I should be cancer-free and ready to go about living my life from one scan to the next. Hallelujah. Please let it be so.
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Those details are a lot to process. But it’s all the other stuff that’s overwhelming: I have to live in Houston—where do I live? I’ll be in my bathrobe, post-surgery, unable to walk up the stairs or even get out of a chair for a while. Who will stay with me and when? I’d like Ty to be at home with the girls for much of the time so that life feels as normal for them as possible. How do we do Christmas in Houston without it feeling depressing? How do we book airline tickets for family visits and caregivers when I don’t even know my surgery dates yet? How can I support my Happy Envelope team from Texas, during our busiest season of the year? Housing, travel, holidays, work… the list goes on.
And then the doozy: How the heck are we going to pay for all of this?
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Many patients at MD Anderson are self-pay. I learned recently that only 30% of the health plans provided on the open market will pay for a nationally dedicated cancer center. I can’t gripe: my insurance this past year has been a remarkable miracle, covering essentially every single bill in full. It just doesn’t cover anything outside the state of Tennessee—specialty or not.
While it’s proven very difficult to track down actual hard costs, I’ve done my best estimating and I know this: I’m going to need an impossible amount of money.
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After our doctor’s appointments, I sat in the lobby of a hotel in Houston and made phone calls. I called my parents and Ty’s parents to update them on what we’d found and what the doctors were pulling together for a plan. Then I called a friend.
I’m scared, I said. I’m not just scared of the surgery and the radiation and cancer. I’m scared because this is going to require an insane amount of money that I don’t have.
This is outside of my skill set. This is beyond my competence. I’m an artist and businesswoman. I know how to make a transaction: we create X and you pay Y. It’s a value trade.
It is much harder to ask for help. Straight-up assistance, where I’m giving nothing… just accepting. There is no trade. It is a one-sided ask.
I sat in the lobby and cried into the phone. I told her my fears and doubts. She listened and then paused. I could hear that she was choosing her words carefully:
Sarah—If you don’t let people come alongside you and help, then you’re robbing people of the joy of participation.
I know she’s right. I took a deep breath. Somehow, these words girded me.
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Last week I sat with another friend, an older, wise woman. I was imparting all of these new details. How does all this make you feel? she asked.
I hesitated. I’m afraid of the stupidest things.
I confessed my deep-seated fears that I had never spoken aloud before: I’m afraid of failing. I’m afraid that if we can’t raise this money, I’ll look bad, or incompetent, or helpless. I feel like I’m in high school again running for homecoming queen, and the insecure girl is rising up in me: Will people like me enough to do this?
The dam broke; I couldn’t finish the sentences through the sobs:
I’m afraid that I’ll have hundreds of thousands of dollars of medical bills I can’t pay. I’m afraid people will give, and I might die anyway. I’m afraid of looking needy. I’m afraid that I won’t be enough.
She locked eyes with me:
Sarah, none of this is on you…
If God doesn’t do it, it won’t get done.
I know she’s right. I took a deep breath, wiping away my tears. Somehow, these words girded me.
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My Bible study just picked up the book of Esther. I know the book of Esther like the back of my hand: I’ve read it many, many times. It’s my favorite. I named my firstborn child after this story. It’s a contentious book—maybe that’s what I like about it.
I’m back at the beginning, where King Xerxes is having a big party with a fancy banquet for all of his military leaders, princes, and nobles. Verse 4 tells us that for a full 180 days he displayed the vast wealth of his kingdom and the splendor and glory of his majesty. And then the next verses describe in detail what the gardens looked like and what kind of expensive materials he included in his parade of glamour.
My new commentary tells me why King Xerxes is doing this, and I’m floored. I’ve never heard this before: the king is fundraising. He’s gathering support—he plans to go to war against Greece and he is drumming up loyalty by displaying his wealth, splendor, and glory.
I read this early in the morning, in the quiet. I’m imagining this performance, this exhibition of grandeur. I see the puffed-up arrogance, self-promotion, and manipulation. But I also see insecurity. I wonder about the pressure he’s put on himself, and I think:
Thank God this isn’t on me.
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One remarkable silver lining about having cancer is seeing the ways people love me. I’ve watched a community rise up around me, Ty, the girls, the business. My village, my wonderful people—soul sisters and brothers—have created a fundraising page for me. They’ve picked the minds of quite a few financial professionals about tax write-offs, mitigating taxes owed, and general best practices for raising medical funds and medical-related expenses. Armed with this knowledge, these sweet friends launched a fund-raising website for medical gift donations, which is linked below.
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I was nervous this morning; I’m feeling anxious because this site launches today. I’m so thankful for what they’ve created and the way they are championing me; I’m hoping and praying that you will participate. I feel as though I’m laying myself bare, and those same ugly fears keep tapping me on the shoulder.
Then in my morning quiet time, trying to still my heart, I happened upon Matthew 6 in The Message, and I’ll leave you with it now:
What I’m trying to do here is to get you to relax, to not be so preoccupied with getting, so you can respond to God’s giving. People who don’t know God and the way he works fuss over these things, but you know both God and how he works… Don’t worry. You’ll find all your human concerns will be met.
Give your entire attention to what God is doing right now, and don’t get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes.
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Everything up until now has led me to this point. I am exactly where I’m meant to be. The river has brought me here, and I’m so thankful I’m not alone.
