Goodbye 2019. Goodbye Cancer.

On December 12, 2019 I rolled up to the hospital, not ready and not completely willing, to check in for surgery.

After being diagnosed with stage zero breast cancer in October, 2019, it felt like surgery was light years away, I even tried calling to move it up, but after Thanksgiving the date flew toward me like a bullet train.

Somewhere between ten years ago when my mom was diagnosed with breast cancer and when I was diagnosed, I made a decision that if I was ever diagnosed with breast cancer, I would get a double mastectomy and reconstructive surgery, with implants. I’d say it every so often to make sure my family knew this would be my decision. And one day, the decision was at my door step. There’s something to be said for making a decision in advance because I knew I was resolute. But even though I knew this was the right choice (for me) and being so grateful to have caught it so early, I also wasn’t prepared for how I’d feel as a result of my decision.

The days leading up to my surgery, I would break down in tears. Sad that my body would be changing, that my girls would be leaving, that I’d probably lose feeling in that area, fear of what it would look like, feel like, terrified of the pain, and how this whole experience would affect my husband and family as it unfolded.

My anesthesiologist, Dr. Luke, prayed for me with my family before my surgery…it was such a small part of the day, but the effects are everlasting. Our interaction was probably 10 minutes out of the entire day, but I’ll never forget how kind that man was to pray for me.

Rob took this picture right before I went back for surgery. You can see the markers on my body, and my surgeon had a whole bunch of markers on my chest too. It’s a surreal feeling to have your body drawn on because those markers are where they will cut, and where they will take hopefully every last cell of cancer. Before going back I just cried and cried. It was happening, there was nothing I could do. I had cancer, I wanted to make sure it was removed from my body completely and I wanted to do everything possible to not have radiation or chemo, and I felt lucky that eliminating chemo or radiation were real possibilities for me.

Unfortunately, it feels as though cancer has affected almost everyone in America in one way or another. And how one determines to fight it is a very personal choice. In this Instagram filtered society we’ve built, I’ve found it common that people want whatever choice is made to have a bow, to have a happy ending, to have no pain or struggle. It just doesn’t exist.

As I’ve been sitting in a lazy boy chair for the past two weeks, thoughts have swirled in my head.

“No one cares.”
“People don’t want to hear about this, Anne-Marie.”
“Your family is such a downer, how many more bad things can come your way?”
“It’s the holidays, don’t blog about how hard of a time you’re having. It’s such a buzzkill.”

It’s true, infertility, medical trauma, special needs, brain surgery and breast cancer are all really hard roads to walk. One is enough, five is like some form of reverse lottery. Why is not a question I ask anymore. I can not control my card deck, only the way I react to it.

The first seven days post surgery I was in so much pain I didn’t think I’d ever be able to move the same again. I’d cry and Rob would pick me up and tell me it was temporary and that he was so sorry and sad I had to go through this. He’s been an incredible trooper taking care of me.

The physical pain is certainly one of the bigger aspects of having a double mastectomy, at the worst it felt like a herd of Charlie horses ravaging my chest cavity, or an entire army on my chest when I’d try to sit up. In the hospital I described my pain as an 8 out of 10, and the only reason I didn’t label it a 10 was in case it got worse!

Physical pain is obvious, but the mental and emotional pain are equal contenders. My confidence was wounded as much as my body. Satan man, he just tries to keep us down any way he can, I know this is only temporary, but it’s really, really hard and I can’t sugar coat it or down play it.

I’ve read a few other breast cancer blogs and stories but for me, they missed conveying the true loss that I’m feeling. Everyone handles this differently, but at the ground zero level of a double mastectomy, it’s one of the hardest things I’ve ever gone through in my life, certainly equal to if not more difficult than brain surgery.

I write this all out for someone who might find this helpful if they’re in this situation themselves; or if you have a friend who has to go through this, you know all the devastating nooks and crannies lurking about. It is crucial to have loved ones, family, friends, children and your spouse to be as accommodating and helpful as possible.

For the first 10 days post-op, Rob set five different alarms on his phone for the five different medications I’m on and would wake up at least twice a night to help me. He emptied the two drains that were stitched to my body, twice a day, and logged how much fluid came out. It’s not glamorous, it’s not supposed to be, it’s sacrificial love. He’s helped me out of my lazy boy countless times in the middle of the night, tucked me in to my lazy boy (which has been my bed since coming home), puts socks on my feet and carefully drapes blankets over me. One night at 4 a.m. he moved a pillow under my arm about 25 times, without complaint, until I felt like it was relieving the stress of my arm just being at my side caused to my chest.

For all the bad and hard things our family has had to go through, I’ve learned what we are made of and the depth of the love my husband has for me. He hasn’t complained, he hasn’t been annoyed, he’s gently helped me with everything I need, and we have actually laughed so much. You know the saying if you don’t laugh you’ll cry, well since I’m already crying it paved the way for more laughter and inside jokes. Since my body is going through its own healing and trauma on the way to an amazing new set of girls, I keep reminding him that I have a great personality.

When I reflect on 2019, the middle part of the year over the summer was hard. Reagan was struggling. While her expressive communication and talking was happening more and more, that was combined with new impulsive behaviors and difficulty handling her emotions when she didn’t get her way. Talking was the gift we have always wanted, but it does come with challenges and new things for her to learn, which is all wonderful, but also a challenge that many parents have to overcome if their child is blessed with the ability to talk.

About a month after school began, I felt like we were getting into a better groove with our family and Reagan. That gave us about a month of security “being in a groove” before this diagnosis. Life constantly changes and our family seems to experience massive swings. In each of the hard seasons of my life that I’ve been privileged enough to see my way through, this truth continues to root itself in my life.

“Look here, you who say, “Today or tomorrow we are going to a certain town and will stay there a year. We will do business there and make a profit.” How do you know what your life will be like tomorrow? Your life is like the morning fog—it’s here a little while, then it’s gone. What you ought to say is, “If the Lord wants us to, we will live and do this or that.” Otherwise you are boasting about your own pretentious plans, and all such boasting is evil.” – James 4:13-16

These words, “How do you know what your life will be like tomorrow?” And comparing our lives to the morning fog, fleeting, puts my struggles into perspective, they are always temporary, around the corner I will find hope, I always have. Always, always, always.

God allows hard things to happen, just like he allows amazing things to happen. And God has regularly given us wisdom when we ask for it and helped us navigate through our pain. Pain is not avoidable and wisdom is not immediate, we’re not perfect, but he is powerful. Years ago the decision I made if faced with breast cancer was made before I learned the humbling truths through our reverse lottery winnings, but this message was a flowing current through each season, “If the Lord wants us to, we will live and do this or that.”

I’ve learned that:
1. I don’t need every answer, I can’t have it anyway.
2. No amount of planning on my part will change God’s plans for my life.
3. It’s OK to cry when my expectations don’t line up with my experience.
4. I know how much I can trust God, and I trust that his plans for my life are higher and better than mine, even though it might not look like that on the surface.

As I close out a wild 2019, I close it knowing that all of my cancer is gone. The pathology was clear and I don’t need radiation or chemo. I’m going into 2020 with a lot of hope. There’s been so much groundwork that has been laid in my personal life that has grown out of tremendous hardship, those roots are solid and I’m ready for big blooms in this new decade. I continue to remain hopeful and cling to our family’s motto: Never backwards. Always forward. Always.

The Heart (and the surgery)

I can’t believe summer 2019 is coming to a close. What a wild adventure our family has gone on; our hearts have been stretched, broken and uplifted. We’ve stepped outside of our comfort zones, seen new things and watched as Reagan’s grit and personality continues to unfold with every new word she’s able to say.

Going to DC was feral and hard, but Wyoming was redemptive. It wasn’t perfect, it wasn’t everything I hoped it would be and imagined in my mind, but it was amazing. My personal goal for the second half of 2019 is to bond more with Reagan and to deepen our relationship. That’s why DC hurt so bad, there were literal slaps in the face. But I had to push through. As a family, we HAD to keep climbing.

And then we made it to the mountains of Wyoming and I think they are the prettiest mountains I’ve ever seen.

Wyoming photos by Peter Lobozzo

I’m so glad we did these photos. Ever since Reagan was a baby, we’ve had photos taken regularly, and it started when I purchased a year photo package from our lovely friend and photographer Kristen Weaver.

Right after our last photo session (below) everything changed.

Pictures would be different. Life would be different.

Photo by Ashley Blahnik of Dearly Photography

But pictures would be the only thing to help us remember the seasons we were in, the feelings we felt and the things God was doing in our hearts in those moments. And this last photo above, is about six weeks after Reagan’s crisis…her grit never changed.

Photo by Katie Williams

Now I’m obsessed with doing pictures when we go cool places or when big things happen. And who could ever forget the Canada photos when Reagan lost a tooth in the forest?

Whether we were in a valley or climbing a mountain, whether we felt storm clouds or sun rays on our face, the pictures capture the season and remind me of what our family was facing in those moments.

The Wyoming pictures will remind me of how a few weeks before we had some of the toughest weeks with Reagan and a really awful family vacation. It will remind me that we pushed through and got on another plane filled with hope for a better vacation, which we had. And it will remind me that just two short weeks after getting back, Reagan would be having heart surgery.

Yes. On August 8, 2019, Reagan will have heart surgery to repair her Atrial Septal Defect. We’ve always known she’s had this, ever since she was two days old. But if you know our story, you realize that sometimes there are bigger things to overcome than heart surgery, which is kind of crazy. Reagan’s heart surgery has taken a back seat for many years in the hopes that the hole in her heart would close on its own, it did not.

I am scared.

My heart hurts.
Look at this girl.
She’s come so so so so far.
She’s independent.
It is amazing.
It is hard.

Rob calls this her “Sound of Music” photo

Rob and I have allowed our hearts to have emotional and spiritual surgery as God has taught us new things, opened our eyes, minds and hearts to how he views us, how he views her, how he views his children, the world.

Even though I’m scared, God is with me. He’s with our family. One of the most memorized Psalms, Psalm 23, talks about how even when we walk through the valley of the shadow of death, we don’t have to fear any evil, because God is there with us. When things are scary, God will camp with you right there, he’ll prepare a table and sit down with you, while your enemies watch. Life includes shadow of death times, and we’ve had our fair share.

So after fighting infertility, pursing adoption, receiving a genetic disorder diagnosis, going through a metabolic crisis and seizures, being given a rare movement disorder diagnosis, placing a feeding tube, and the myriad of issues that come with all that, combined with my own brain surgery two years ago, we are diving into heart surgery this Thursday and Rob and I really do covet all of your prayers.

Isn’t this life so crazy? Like no one says, “I’d like to say yes to all of those things above.” But God…he just knows what he’s doing. If our family can go through all of that, and still say YES to God, YES to Jesus, and put our faith and trust in His hands, you can do that too. I can trust God with my present and my future and I can trust whether I’m eating in the presence of my enemies or my friends, he’s got me.

I whole heartedly believe Romans 8:28, “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”

We will always walk forward. Our family motto is: Never Backwards. Always Forward. Always. We will always be standing alongside Reagan as her story unfolds, just as I know so many of you stand with our family as we share this unbelievable journey. Thank you for that. Please pray for Reagan’s heart, her surgical team and our hearts too. Watching this sort of stuff go down with your child is one of the hardest things a parent can do. Thank you for your prayers.

xoxo

Is your back against a wall?

We’re coming up on the FIVE YEAR anniversary of Reagan’s crisis. It happened April 8, 2014. Back then, things looked grim, like they were over. But oh, how God can take the really awful things and make them really awesome. Only God can take a locust destroyed land, and restore it, as if the locusts were never there.

It’s not every day we talk about locusts, but I got wrapped up in reading Exodus 10 and the surrounding chapters this morning. It says one day God blew in a strong east wind all day and night, and in the morning locusts “invaded” Egypt and “covered all the ground until it was black.”

Can you imagine?!

Let me briefly unpack what happens next. Pharaoh was angry, he summons Moses, says he’s sorry, asks for the locusts to leave, and then God brings a strong west wind and they all blow away into the Red Sea until not one locust was left in Egypt.

The plague of the locusts was actually the eighth plague out of ten that God brought to Egypt leading up to the mass exodus of the Israelites out of slavery from Egypt. I know when we go through hardships, like a locust eating hardship, we’re often we’re quick to blame God.

“How can He do this to me?”
If he was a loving God, he would never do this.”

Those questions are human and valid, but they come from a place that lacks the full knowledge of what God knows. When looking at the 10 plagues and the exodus from Egypt, God gave Pharaoh nine solid chances to let his people go, it was the 10th plague when Pharaoh had enough and couldn’t take it anymore and finally let the Israelites go.

Want to know what’s even more crazy? When the Israelites are set free, God doesn’t take them on the shortest path out of Egypt, he takes the long, scenic route. He took them around the desert and he had good reason, it says in Exodus 13:17-18 that God knew if they went the shortest way, they could face war and then run back into Egypt and into slavery.

Ugh…reading this, for me was super impactful. I really feel like our family has really gone off the beaten path to get to where we are. But God knew something we didn’t. In order for our family to get here, with our faith, with our marriage, with our ability to communicate and enter into someone else’s hard space and speak some of God’s hardest truths, with confidence, we had to walk that path. We had to go the long way around.

It gets better though, for the Israelites and for you! I’m telling you, read the plagues in Exodus and about God’s deliverance of Israel, the Bible is for sure not boring in these chapters.

Good news, the Israelites escape, even though they went the long way, but now their backs are literally against a wall, a wall of water known as the Red Sea, and it looks like it’s over because the entire Egyptian army is racing toward them. But God made a way. He said:

The Egyptians you see today, you will never see again. The Lord will fight for you; you need only to be still.” – Exodus 14:13-14

What if that was our stance toward every arrow that is flung in our direction? In sickness, in financial trouble, in marital woes, with our children, with our enemies. The Israelites stood there looking back, and God said, don’t you worry about that army of 600 of Pharaoh’s finest chariots loaded up with officers and his entire army of troops coming after you; I’ll fight that battle, you just be still.

I’ll fight the battle with Reagan, just be faithful to me, Rob and Anne-Marie.
The Lord will fight and she’ll walk again. You be still.
The Lord will fight and she’ll eat again. You be still.
The Lord will fight and she’ll talk again. You be still.
The Lord will fight and she’ll read. You be still.
The Lord will fight and she’ll smile and laugh, and we will take the long way to get there.

The thing that’s cool about going the long way, is you will only see beautiful things, gain wonderful wisdom and walk with confidence when you go the long way.

Five years ago, I firmly believed it was impossible for Reagan to re-gain anything back. You know what else looked impossible? Escaping Pharaoh’s army.

Did you know that the Red Sea has a maximum depth measured at 8,200 feet and has an average depth of 1,640 feet? Neither did I. God made a way for the Israelites by splitting the sea and they walked across on DRY LAND. The Bible is super clear that the land was dry.

“Then Moses stretched out his hand over the sea, and all that night the Lord drove the sea back with a strong east wind and turned it into dry land. The waters were divided, and the Israelites went through the sea on dry ground, with a wall of water on their right and on their left.”
– Exodus 14:21-22

If you feel like you’re drowning, or in a place that seems hopeless and a place where you future feels less than sure, remember what God has already done, and if you can’t remember what he’s done in your life, man…Exodus is a really cool place to be reminded of what God can do, what He has done and that putting your faith in Him is a great place to start.

If you’re thinking, “Yeah but that was so long ago, he won’t do that for me.” Then look at my family, because if God can restore us and Reagan, he can restore you too. He can take whatever you are struggling with and turn it into something beautiful that has a purpose. The path to restoration might not look how you want it to, it never does to be honest. You’re most likely on the scenic route, where you’ll see really beautiful things and learn something you never could with a shortcut. Then and only then, will you walk confidently out of your hopeless situation feeling hopeful, strong and a lot wiser.