Chase and his puppy, “Biscuit” in pre-op. “X” marks the eye designated for surgery.
This past Friday, after a nearly two year break, Chase headed back into the operating room. He’s been under anesthesia with MRIs on the regular, but since they last opened up his chest and removed his port, there’s been nothing and no one cutting into him.
He’s two years older now. Gone are the days when “it’ll just be a quick nap with the doctor” completely cut the fearful look and quiet whimpers, and this was something for which I was not prepared.
During chemo, I thought there couldn’t possibly be anything worse than little ones getting cancer treatments. Our baby, our two-year-old, chubby little should have been running around at a park instead of getting chemotherapies and surgeries; and that felt like the absolute worst.. But I was not prepared for the reaction to the word “surgery” spoken over a fully cognizant, old-enough-to-understand six-year-old. He now understands that what happens “like magic” when he sleeps actually cuts into his body to give, take or change something. For better and greater good, yes, but there’s still dealing with the concept that while he sleeps, things unfold in and around his body; things far beyond his control. With age comes the burden of knowledge.
On the one hand, I am deeply thankful to see Chase mature because there are and will always be questions about how much he understands, in what dimension he understands them, and how he will possibly remember them.
But on the other hand, it means Bob and I now speak to him like an adult about these things, knowing that words of comfort might encourage and strengthen, but will not always allay the fear.
How do you tell a six-year-old that the only way out is through? It seems perfectly appropriate when applied to cleaning up the basement, and so very broken and wrong in a pre-op room.
And the night before the surgery, I sat on the edge of his bed as he whimpered “I’m scared” and “I don’t want to do this” over a few times as if repeating it would get him out of it. And then we whisper-sang “10,000 Reasons” like we did in the older treatment days and he was finally able to sleep.
Chase and I talked about it now that it’s all over and done and he said that the surgery wasn’t really that scary, but the truth came out in his very next sentence: “But mom, for four days, I was scared.” – The four days before nearly ate him alive, and he nearly took the rest of the family with him. (reference: ninja-star-holding the door jamb while refusing to get on the bus)
This time was good for me because with all Chase’s complications and high-maintenance needs, daily life feels pretty demanding 24/7, but it wasn’t until I sat next to him hearing the words “And on that day when my strength is failing, the end draws near and my time has come…” falling from his lopsided mouth that I realized life actually has been easier than it was once upon a time. I’d forgotten what it looked like in the shadow -of treatment, of procedures, of another something looming.
I mean, there are shadows now, but they’re further out, like knowing a storm is coming, not like running to the shelter when it’s nearly on top of you. Surgery in the morning is like running to the shelter. It’s on top of you and it’s inevitable. All you can do is duck and cover, praying to survive. And our “muscles” are so out of practice with the run because we haven’t done it in two years.
So yeah, it was hard, and pssshhh… all this irony and metaphor over an eye surgery?
You bet.
They wheeled my baby out on a gurney and I had to stand at a set of doors and walk no further as the scrub and gown-clad staff reassured me that they’d take him from here and he’d be fine. I had to look at his face while he wouldn’t look at mine because he was drugged and afraid and not even the strongest “mellow” could take away the separation (though he would not remember it afterwards) and sometimes it’s easier if you don’t look. And then they’d take him into a room, tape his head to a table, paralyze his unconscious eyes to keep them from rolling into the back of his head and jeopardizing the surgery, and then they’d intubate him and proceed to cut into his eye and patch and repair him for the next hour.
And now I carry a little card in my bag, right next to my insurance card and drivers’ license, and it tells the make and model of the false lenses that sit in my six-year-old eye socket.
And all because of the treatment we chose to save his life.
I write this as I’m weeping-breaking-bone-tired. The last 48 hours have been spent trying to amuse a highly active and light sensitive child (whose anesthesia included a steroid dose, and who cannot get wet, wrestle, get dirty, play sports or play outside) by day and stay near his restless body by night to make sure he doesn’t claw at the patch, tape, or tender skin around the eye and skull tape wounds in his sleep.
I know all the right things to think. I know this was just a surgery, and in a few weeks, the pleading/negotiating/wresting-to-the-floor eye drop sessions every few hours will be done. I know I need sleep and I know I need to sustain my soul with God’s word. And I know that until I do these things, everything is going to seem worse and more un-doable than it really is.
But in this moment, this late Sunday night writing time, I’m just laying it all out. How Chase felt, how I felt, what it was like to be back near an operating room – all of it.
Maybe my raw feelings will encourage you because you’ll know you aren’t alone, or maybe it’ll simply bless you because you can quite honestly say “Wow, I’m nowhere near the hot mess that she is!” – And hey, that works too.
Bottom line: We’re hurt, we never really get used to surgeries no matter the age, we’re broken, and this too shall pass because even in this moment when I’ve come to the end of myself (for the 40 millionth time), I know I shall wake to yet another dose of strength and hope for this crazy life because He isn’t at the end of Himself.
Moment by moment.
“God is our refuge and strength, always ready to help in times of trouble.”
Psalm 46:1
Even though the light hurts like crazy, we went for a short walk in the beautiful Sunday weather.
This week, I had the honor to guest write for Way-FM. They asked me if I’d be willing to write about the seasons in life that come with no answers, and fully acknowledging the irony of answering the unanswerable, I undertook to wrestle through this. And I’m so glad I did! God is faithful and good.
I hope my wrestling blesses you as it did me. I’ve included the first few sentences here to get you started and then click on over to Way-FM and discover where I ended up with my answers.
-MbM-
“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.
But, I know I’m not the only one who has heard words like this and Chase isn’t the only one to carry cancer like this.
How many times have I heard other stories?
Have you heard them too?
The friend whose breast cancer was gone for thirty years and then relapsed…
The small child who had every advantage that modern medicine could offer and still stopped breathing…
The parents and family and friends with empty arms and an un-fillable void in their lives…
Cancer is a bully – a vicious beast robbing us of our health, resources, relationships, and perhaps most frequently: answers. Nurses look puzzled, doctors shrug, and all people – from every possible religious and cultural background – weep, pray, and go through various rituals to beg for answers that will bring peace and change, and most especially, healing. As if somehow, understanding the unfolding horror will make it suddenly more bearable…”
Sometimes it isn’t the actual doing of things that is hard, but it’s the thinking about doing things that lays us out on the floor and oddly teaches us dependence.
Chase has his first of two eye surgeries tomorrow (Friday), and we’re all a bit of a wreck over it. Which is ironic when you consider all he’s had done over the years. To have gone from major, major brain surgery with half his head lying open to fearing a simple outpatient surgery on one eyeball – that same procedure that very likely half the population over age 60 has done – it doesn’t make sense, does it? But fear never does make sense.
We are desperately out of practice with surgeries. Chase hasn’t had a single procedure for nearly two years, and so the thinking of tomorrow – even when we rehearse being strong and of good courage because God is with us – it’s been laying us out, or driving us up a wall.
Carrying this on his heart finally culminated yesterday morning in a knock-down, drag-out, complete and total refusal to get on the bus. He lay down on the sidewalk, and then he ran for the door and wouldn’t let go of the handle, and then he made it in the house and took a standoff posture in the living room, followed by clinging to the bannister while I tried to carry him down the stairs, and finally, a star-like posture with his arms and legs against either side of the doorway while I tried to get him outside again. This kid, he knows how to fight. You get the idea…
Right now, it sounds a little hilarious and completely like something out of a Calvin and Hobbes cartoon, but in that minute when he was screaming and pulling my hair, and the bus driver was honking and frowning at me, and I was pretty sure one of the drivers in the halted cars on either side of the street was about to call child services on the whole spectacle, it was awful, and I could feel myself sweating and freaking out right along with Chase.
He missed the bus and the morning got completely thrown off, but it ended up being the best thing that could have happened because I got him to one of his “safe zones” – the places he can escape to when he’s really worked up – and I wrapped him in his favorite, old blanket, and when he was finally still, we talked.
“Surgery.” He only spoke one word and his poor, broken eyes welled up with tears.
He recoiled as I began to speak comfort and logic and interrupted frantically, “But are they going to take my eyeballs out??”
Oh dear ones, I’ve said it before and I’m saying it again now because it took Chase in tears with secret, crazy fears and sitting under a surgery shadow again to make me realize afresh how desperately I needed to slow down and just be in the moment by moment grace of life. Sometimes, we all just need to sit down and reassure somebody that no matter how bad it all feels, our eyeballs are still going to be in our heads at the end of the day (or whatever your equivalent of this scenario might be).
Life is too important and too short to worry about what we look like to others or what happens to our perfectly planned days when the unexpected shows up at our door. (or ninja-refuses to step outside our door)
It’s time to keep our eyeballs in our heads, breathe deep, and love those around us in need. And if you think of it, please pray for Chase as he goes back into the OR tomorrow.
It’s been a year since two dear ladies sat with me on a conference call and invited me to submit a book proposal and I’ve had to go back and re-thank them both for the honor I now understand that they were bestowing on me.
One whole year of writing and re-writing, editing and re-editing. Of bloody-looking files filled with red words and notes so prolific and desperately needed that Chase would come up behind me and exclaim: “Hey Mom, it looks like Christmas on your computer! It’s all red and white!”
One year of forming new bonds with a new family who have taken up Chase’s story as their own. They have prayed for him and prayed for me, and have cheered us on and even helped us find beautiful resolution to a story with no ending.
One year that we’ve all wrestled to “get it right” – and wow, is it beautiful. I filled the pages and they turned it into art.
I cannot even begin to describe what it was like to put myself back in the rooms, on the ambulances, waiting during surgeries – all of it – and then to dig even deeper into the hows and whys. It’s both broken and strengthened me in so many ways to type the words “moment by moment” all over again through current life challenges and not just past seasons. Oh, God is good as He pushes me to keep seeing Him in all the craziness even now.
So, out of this process that I’ve begun to think of as a fifth pregnancy; after a long labor and delivery, there is birthed a beautiful new baby, if you will…
Chase Away Cancer: A Powerful True Story Of Finding Light In A Dark Diagnosis
My heart is full. I poured everything I had into these pages and they’re FOR YOU.
When will Chase Away Cancer be in stores? May 1st, 2016
How can I help? I’m so glad you asked! My heart for this book is to be an encouragement to others and also to help raise awareness about what it can look like on the inside of a cancer diagnosis.
So here are a few practical, hands-on way you can join me:
You can take to social media on behalf of the book: Please re-post and re-tweet anything I’m sending out – and don’t forget #chaseawaycancer
You can share the website with friends and family: My new BFF Rachel over at Tyndale designed the most gorgeous piece for www.chaseawaycancer.com, so now, when you go to the main address, it’ll take you right to book information complete with links to major retailers and beautiful pictures, bios, endorsements, free downloads, etc. It’s a work of art – check it out! Um, also? Free downloads. Don’t miss that part.
You can pick a special day to order the book: I’ve learned that sold books are counted not as whole, but by the week, so if you’re trying to figure out the optimal day to order the book, make it May 1st! If we raise the roof over this and hundreds of people are going crazy about the book on that date (and the following week), just think how many retailers and outlets will need to start thinking more about the topics covered within this story as they look at their weekly sales.
You can write a review of the book: After a certain number of reviews (50), Amazon will start to promote the book and suggest it to others. Um, yes, please!
Promotion is not easy for me (just ask my realtor husband who has almost lay down and died multiple times with the crazy go-live-in-a-cave-and-not-talk-to-people-anymore things I’ve said over the years), but I’m stepping out of my comfort zone for you:
Because I believe God is good and that’s why I wrote this book.
Because I believe this book is full of things we all face in one facet or another.
Because I believe that if we all start talking about this story, then we all start opening doors and discussions to cancer, the goodness of God in trials, fear, faith, and so many other things.
Because maybe you know someone who needs to read this book even more than you do and you’re the one to put it in their hands.
You guys, I have no idea where this story is going to go, but I can tell you that the very first advanced copy went out on an ambulance. True story. Can you imagine…?
Yeah, so this warrior, survivor boy, he has some big news for you this week. Yes, you!
He’s been waiting with it for some time now and he was so fit to burst with the wonder of it that we had to do a photo rather than a video as he kept blurting it out at the top of his voice while he was dancing around with the sign.
“There are no words in any language that adequately express the emotion felt when hearing the phrase: “There’s a large mass”, no way to express the feelings that wash over the heart and mind when these words are spoken over the body of a two-year-old boy.
