Breast cancer, pregnancy, and one mother's story

October is breast cancer awareness month, and nobody was as shocked as our family when my little sister Stacy was diagnosed with breast cancer eleven years ago. Forever etched in my mind, I still remember where I was standing when the grim news was handed down.

It was November 2008, and my baby sister, Stacy Roorda, was a busy 37-year-old mother of 2 young daughters who had annoying sensations in her left arm along with a lump in her armpit. As the youngest of five siblings, my family urged her to have it checked out. But having just moved into a much larger home, my little sister attributed her symptom to the strains of moving. Besides, as pestering as they were, she wasn’t fond of going to the doctor.

It’s not hard to understand why my sister ignored her symptoms. As a kid, she was independent, savvy, wicked smart, and very witty. She did things her way. As an adult, nothing has changed aside from adding a few more adjectives to her reputation. Kind. Compassionate. Faithful.

And a poster woman for courage.

Stacy’s symptoms didn’t go away. Although not terribly worried, she finally scheduled a visit with her naturopath. Possible causes ranged from infection to something more sinister, and Stacy was sent for a battery of tests.

The devastating results arrived the day before Thanksgiving: Stacy had stage 4 breast cancer, and it was aggressive.

Although stunned, Stacy trusted her strong faith to carry her through.

An oncologist was called in and a plan quickly formulated: immediate surgery followed by chemo and radiation. Stacy was suddenly on the fast track. With two little girls at home, every second counted. 

But pre-op blood work showed another surprise: Stacy was pregnant.

Her high-risk case was transferred to Seattle. After reviewing the situation, her panel of doctors were clear in their consensus and didn’t mince words. The cancer was highly aggressive, and pregnancy hormones were like throwing gasoline on a fire. They gave her an ultimatum: it was either her or the baby—they couldn't save both.

Stacy refused to abort.

Her doctors hadn't yet understood that Stacy does things her way—God's way.

Stacy was known for her devout faith. And her stubbornness. Despite pressure from the best oncologists in the state, she refused to terminate the unexpected pregnancy. Doctors wanted to know why.

“I wouldn’t give up my other two children, I’m not giving up this one. So you need to figure out a plan B,” was Stacy’s reply.

The entire team of specialists walked out of the conference room, leaving Stacy and her husband Matt alone with their decision.

“Matt and I just sat there. We were newly pregnant, fighting cancer, and in total shock. Just as I was beginning to wonder if this was the right choice, one of the resident radiologists snuck back in to the room. She quietly said, ‘I’m a Christian too, and I want you to know that it’s a baby, not a fetus, and you’re making the right choice. I’ll be praying for you.’ Both Matt and I burst out sobbing. It was exactly what we needed to hear at that moment,” she said.

But she was frightened, and turned to God for comfort.

“I immediately got an image of a harness that race car drivers wear. The feeling was instant. ‘Sit down and buckle up. It’s going to be a rough road, but you’ll be fine.’ I grabbed onto that thought and never let go,” she said.

An older, less effective chemotherapy deemed safer for the developing baby was planned. Nicknamed Red Death, the goal was to slow down the cancer to buy Stacy time until the baby could be born. Treatment began immediately.

Back home, the news of Stacy’s plight spread rapidly in her small hometown of Lynden, Washington. With a 2-year-old and 4-year-old at home, and the very lives of Stacy and her unborn child at stake in Seattle, family and friends sprang into action. Meals were brought, childcare was juggled, and a prayer chain was started. While bolstered by the many petitions, Stacy wasn’t about to be left out of the prayer party held on her behalf.

“Before every round of chemo, I would go into the bathroom by myself and take a few moments to look directly at Jesus. You can always look around in the world and listen to the negative stuff, but if you look up to Jesus, that's where you find peace that surpasses all understanding. And I prayed that Jesus would fill the room with angels. And I felt as long as Jesus was there with me, I could do it,” she said.

But after five rounds of Red Death, the baby started showing signs of distress. They had to stop treatment. 

Things went from bad to worse.

An MRI showed the cancer had advanced to Stacy’s spine, and was marching downward. At 32 weeks gestation, they needed to deliver the baby before cancer reached the womb.

“Once again I was totally shocked. I thought back to the image of the seat belt. I had a very serious conversation with God. ‘I don’t remember signing up for this part. I’ve done everything you asked and I’ve trusted you. You brought us through an amazing journey and we’ve been lifted up in prayer by loved ones and complete strangers around the world. How could this be?’ But once again, I got the feeling God was indeed there and would bring me through it. He gave me a peace that surpassed all understanding, all I had to do was keep praying,” she said.

By this time, reports of Stacy’s dire situation had spread far and wide.

“I heard that my story reached missionaries, and people all around the world were praying. That was the most humbling part—people were praying for me who had never met me. That carried Matt and I through the whole thing,” she said.

With news that such a premature delivery was imminent, the prayers that surrounded Stacy and her family took on a new urgency.

Less than 48 hours later, Jazmine Stacy Roorda was born. Weighing just 3.5 pounds and lacking the sucking reflex that hadn’t yet developed, their tiny newborn daughter was otherwise perfect.

The announcement of the baby’s birth spread along the prayer chain, but the petitions on their behalf didn’t stop. With the pregnancy behind her, two young daughters at home, a preemie far away in a Seattle NICU, Stacy now faced the cancer treatment head on.

The intensity of the prayer chain that now stretched around the world fortified Stacy’s determination. For she believed without a doubt that the positive, loving energy contained in a prayer chain is a force that cannot be denied.

What happened next is what some might call a miracle: the treatment designed to buy Stacy a bit more time with her family instead, and inexplicably, brought the cancer to a standstill. It’s been frozen ever since.

  

Today, Stacy’s story is now 11 years old. The once premature baby is now a thriving 10-year-old who holds her own against two older sisters.

With metastases in her bone, Stacy will never be considered in remission. But with the devastating prognosis in her rearview mirror and the best oncologists in the state optimistically watching, Stacy’s cancer has shown no metabolic activity in nearly 10 years. And Stacy gives much of the credit to the prayers that came from strangers across the globe.

“The power of prayer is how God works in this world—through people and their petition. Their desire to pray for a complete stranger is out of their love for Jesus. Love trumps everything,” she said.

Stacy talks unabashedly about her faith and as independent as she is, she trusts God will write the final chapter his way. As a mother to three girls, she is too busy today to worry about tomorrow. Her life is rich, full, and she counts her blessings for the years of dance lessons, monthly hormones, and missing homework—all the little things that raising three girls brings to a mother's heart.

Since that day 11 years ago when my little sister was handed a devastating diagnosis, our family has weathered more tragedies and challenges. Yet Stacy remains my poster child for courage, determination, faith, and love.

I don't know what the future holds, but I do know this: one day may I be as strong, courageous, kind, compassionate, and maybe a little bit witty just like my baby sister.

#Pinktober #BCA #BreastCancer #BreastCancerAwareness #FightLikeAGirl

You don't see me, but I am here

My heart is filled with peace. This morning I received a lovely message from a newly bereaved mom who bought a copy of Grief Diaries: Surviving Loss of a Child. 

"I am so thankful for it. I'm only half way through but love so very much how every part of the process is broke down with each family." She goes on to say, "I feel like I'm going crazy so much of the time. Just existing, trying to get through the day by staying busy. The nights are the worst." 

It brings me peace to know our books help others, and this mother's words nail it for many of us. When I lost Aly, I felt like I was going certifiably crazy. The nights were the worst because bedtime meant there was nothing left to distract me from pain, allowing sorrow to engulf me like the flames of hell.

But if I can offer one thing to anyone with a hurting heart, it is this: eventually your heart will be able to hold joy at the same time it holds sorrow. True story. Joy doesn't replace the sorrow, but it does help to balance the sadness. Hell doesn't last forever—hard to believe now, I know. But until sanity returns to your world, hold on to the idea that hope can be healed and restored. 

At the back of many of the Grief Diaries books is my chapter on Finding the Sunrise, a how-to of the very steps I took to restore sanity to my world. I didn't want to do them and had to fight hard to find strength, energy, and the courage. But like any exercise routine, practicing those steps will get easier with time. Until then, don't give up! Baby steps will eventually make all the difference. 

In the meantime, please know that although you feel broken and isolated from the rest of the world, you aren't truly alone. You might not see me, but I am here, and so is the rest of the Grief Diaries village. XOXO

World Arthritis Day—and why I do what I do

Today is World Arthritis Day and I've been awake since 2:30 a.m. But not because it's a day dedicated to raising awareness about arthritis. While that's very important, today I also reached a personal milestone—the release of my 30th anthology, which just happens to be about living with rheumatic diseases.

Thirty titles in two years.

Who does that?

Me. A bereaved mother from small town America—the girl next door.

Why?

Because I had a dream about my daughter dying in a car accident, leaving behind a book. Two years later, she died in a car accident. 

Also because storytelling is important to humanity. It's how we document history, raise awareness, and foster understanding about the complexities of life.

In spite of my success and the importance of the topics we’ve covered—rheumatic diseases, endometriosis, mental illness, and grief—the stories haven’t always been welcome. Just today a hospital staffer opined that death, illness, and other life challenges are part of life, and people learn to cope on their own—no need for books to tell them how.

While it's true that we all learn to cope eventually, until then many feel misunderstood, invalidated, and become socially isolated. Wouldn't it be so much better if we swapped stories and shared our coping tools? Who better to learn from than those who walked the same path? 

That's why I do what I do.

Take today's release about living with autoimmune disease. What biologic works? Which ones don’t? How do you deal with the need to use motorized grocery carts under scrutiny from others who don't see your pain? How do you pay for expensive medications not covered by insurance?

The writers who contributed to Living with Rheumatic Diseases tackled these issues with candid gusto, and as much as their answers might shock you, they’ll be a lifeline to readers facing the same challenges.

This morning at 2:30 a.m., I laid there reflecting on today’s personal milestone and where my own path has taken me since my daughter died; it's one I certainly never predicted. As a bereaved mother from small town America, the girl next door, I've now sat with historic icons, dined with people who dine with the president, and interviewed notable societal figures. As much as those were memorable moments, at the end of the day it’s the writers who are my heroes. Each one—all 650+ writers who joined me in 30 books over the past two years and willingly revealed all for the benefit of others.

This is why I love sharing stories: they make a difference to those in need. Maybe not to historic icons, those who've dined with the president, and societal figures. But they matter to everyday people searching for understanding, compassion, and most importantly hope. Because that's what we get when we discover we aren't alone—hope.

Which is why I do what I do.