I feel a little like I’ve gone through the stages of grief. I don’t know what the stages actually are, but I know my emotions have dipped and twisted and bent over backwards. They’ve hit every nook, cranny and crag they possibly could have, and here I am, nine days after Sophia’s diagnosis, feeling like the last week has spanned a full year.
None of us are sleeping very well, and I’ve started to see a shift in my own reaction about things. I’ve gone from broken-hearted to resolute to disbelieving to strong to a melted puddle. Every morning when I wake up, the first words that pop into my head are “thyroid cancer.”
Before I even open my eyes, the words are there, the memory of the drastic turn our lives have taken in the past week and a half.
They’re haunting, really. I wonder if I’ll ever get used to them. I wonder if I’ll ever look at Sophia’s neck and not think “How dare you try and infect my baby girl.”
People told me right from the start that thyroid cancer is “the best cancer to get.” Everyone is always careful to follow up with “not that there’s a good kind of cancer.” Those words were so comforting to me in the first couple of days after she was diagnosed, when we still knew almost nothing about this disease. Of COURSE I wanted to know that this cancer is slow-growing and that there are many people who have this exact surgery and go on to have absolutely no trace of cancer left in their bodies.
But when people tell me that now, I almost feel like my grief is no longer warranted. It’s like I need to suck it up because of all the cancers she could’ve gotten, she got the good one. (Nobody is saying these things…these are my own feelings infiltrating my mind now…)
But my heart can’t suck it up. It’s still cancer. It’s still major surgery. It’s still not fair.
And while I know in my heart that Sophia is going to be okay, right now, I’m still kind of not okay.
What does “okay” look like anyway?
Image via Kal Barteski
On Tuesday, our insurance said we couldn’t have the surgery in Madison and my heart nearly broke in half. That night I cried myself to sleep, gripped with the kind of fear only a mother could feel–how were we going to wade into these unfamiliar waters and find a surgeon? What if they weren’t a great surgeon? What if our insurance wouldn’t approve them either? What if they kept pushing the surgery off later and later?
If we’re friends on Facebook, you already know the story, but here’s what you may not know. I put out a request for prayer that night, and I sat there thinking “I have to be an advocate for my child.” So if that meant I needed to learn all there was to know about insurance and endocrine surgeons and whatever else she needs, I was going to do it.
Social media definitely has its downsides, but when you’re in crisis, I have to say, it’s a tremendous gift. The outpouring of offers to help, of wisdom from people who’d been in our shoes, of parents who had names of surgeons they credited with saving their children–that all came through social media.
And we sprung into action. While the wonderful people in Madison worked on getting Sophia’s surgery approved with the insurance, we did everything we could to get whatever information we could to help get this surgery done.
I want this cancer out of her. I don’t care if it grows slow. I don’t care if it’s “the best” cancer to have. It doesn’t get to stay inside her for a single second longer than is absolutely necessary.
Friday we took a trip in to Chicago to Lurie Children’s Hospital to see a surgeon that came so very highly recommended and who was in our network. That same day, we found out the insurance approved our surgery in Madison with the first surgeon we consulted with–another highly recommended surgeon.
In a matter of days we went from having no options to having two fabulous options.
And it was as if God was saying “I’m going to take care of this…and then some.”
So as it stands, Sophia is scheduled to have surgery September 25th in Madison. It’s four days before homecoming.
I was really hoping to take her shopping for a pretty dress.
In all of this, when I walk outside and look up at the sunset I still think of how GOOD and faithful God has been to us. I still think that in spite of this awful thing we’re going through, our life is still blessed and our children are still strong and healthy and we are still so incredibly loved.
Sophia really wanted this thyroid necklace from Anatomical Element. It came today. Turns out the girl who made it works at Lurie’s. What are the odds?
From a practical standpoint, we’ve made some significant dietary changes for Sophia. Say what you want, but cancer feeds off of sugar, so that’s automatically out. She’s eating a completely paleo diet, like me. Maybe the rest of our family will jump on board. (Feel free to share your favorite recipes and websites!)
Tomorrow, she’s also having acupuncture to help with her anxiety and she’s started doing yoga to relax her mind. I’m hoping to schedule her for a massage before her surgery–I just want her to feel good for a little while.
We’re coming up on two weeks since she was diagnosed. And my prayer for this week is “Please make it wholly uneventful.” What I wouldn’t give for a boring week. A week of the mundane. Nothing exciting or interesting at all.
That’s my prayer for this week.
Because I think that’s what it’s going to take to get through next week.
Oh, and please go read THIS POST and then go do a thyroid self-exam. The doctor at Lurie’s told us thyroid cancer is the fastest growing cancer among children and they have no idea why.
Maybe it’s slow growing…but it’s still cancer. And in my opinion, no cancer is the good kind.