do-re-mi

For years now I've looked at many, and read some blogs, and I always wondered “what would I write about?” If you know me you know I can talk your ear off (probably both if you'll let me), but I never thought I'd have anything to share. But lo and behold, something came into my life that I realize I need to share. This “detour” in my life journey is not one any 25 year old ever imagines themselves following. That detour for me is called “NUT Midline Carcinoma.”

So here goes...

Let's start at the very beginning, (according to Maria a very good place to start). Some 25+ years ago I was being “knit together in my mother's womb,” and somewhere during during this process starts this journey, a rare genetic mutation was woven into my DNA. Something of what seems like a mistake, but is in reality just how I was “wonderfully made.”

Fast forward 25 years to April 13th, 2018, where we're busy baking a cake and cupcakes for Lance and Jaylene's wedding. I casually mention to mom and Susan that I've been having some issues breathing, where if I inhaled deeply it was quite uncomfortable. I, of course, assume it will just go away, but get told I need to go get it checked out. So, after a beautiful wedding and a quick road trip out to White Rock, I finally go to the doctor. He tells me he's not too worried but to get an ultrasound, and then come back if it's still there in 2 weeks. Nothing comes back on the ultrasound, and the pain pretty much went away, so I did not go back. A few weeks later I picked up a cold, what seemed like an endless headache and serious back pain. But you know, “I've been busy, I just need rest.”

A couple weeks after that my “baby” nephew Alex ends up in the Stollery PICU, clutching on to life (he's doing great now). But, hey, another thing to explain the pain, fatigue, and stress. July 5th was the day Charlene told me this wasn't normal, as moving 2 totes of clothes up the stairs has me completely winded, and absolutely mortified at my physical condition. The following Monday I once again headed to the doctor, this time just down the street. He gives me steroids for my lungs, and sends me for x-ray to settle both our minds. Needless to say, that did not happen. Next day I get a phone call “we've found a darker cloudy area in your lungs, so you'll have to go for a CT scan.” August 8th, my 25th birthday, was the fateful day. “Are you nervous?" mom asks as we're walking into the hospital, “a little” I respond as I thank the good Lord for polarized sunglasses that hide the tears in my eyes. So after a quick and painless appointment, we went on to celebrate the big 2-5! At the end of the night we talk about everyone's 5 year plan, and what do you hope/pray your life will look like. What is it they say: man plans, and God laughs? But in my head this is the year I will become a real adult, this is the “year of trust.”

Monday morning I'm having a lovely chat with Marieta when my phone suddenly rings: “can you come in today? If you can be here in 5 minutes we can see your right away" “I can make that happen”(as I'm in my PJs 🙈).

20 minutes later I'm on my way back home, calling Marieta, a mostly silent conversation where all I get out is “apparently malignant tumour, probably lymphoma,” then a bunch of sobs and a seemingly endless stream of hot tears. So, as I make my way to my bedroom floor we cry together, and then we pray. I immediately head over to the Ebenals, because I need a hug, and a cry. After a frantic phone call from the Netherlands, mom and dad drop everything and make their way to Red Deer, where after some quick hugs and introductions we cry together, and once again we pray!

We ended our time with the words of my late opa: “come, let's do something” and so we go on with our day.

A week later, August 20th, mom and I are in Edmonton seeing Dr. Stollery (no, the hospital wasn't named after him, we asked). After a brief health history we're on our way home, with instructions to come back Wednesday morning for a biopsy.

So bright and early Wednesday morning, Emily and I are on our way to Edmonton, joking about getting drugged, and crying over a podcast. After getting the most drugged I've ever been, a mild panic attack, and a bunch of laughter and tears, we're once again on our way home - a drive filled with me bugging Emily to “please let me have some water.” Trust me, those 8 hours felt like an eternity.

And then we wait… and wait… and wait!

Thursday, August 30th, it's 10:10 and I'm running so late! My phone rings, and I know I have to answer it. As soon as Dr. Stollery says: “is someone there with you?” I know this is not the answer I was hoping for.

“You have NUT Midline Carcinoma, NUT I guess? A genetic mutation, very rare. Treatment is typically drug therapy and chemotherapy. There are clinical trials in the US we'll want to explore. Do you have any questions?”

“Nope.”

And that was that. Off to work I went, where I sniffled my way through an hour massage willing myself not to cry, as I'm imagining some of the hardest phone calls and conversations I'd probably have.

And now we wait again, until there's an appointment date, where we will learn more.

Right now this is all I know, I personally have chosen not to research yet, because I don't know if I want to know the answers I find. For now all we can do is pray: pray for a miracle, pray for peace, pray for rest. I feel so incredibly blessed, and at the same time overwhelmed by the amazing outpouring of support! I am doing my best to keep up with messages and to respond in a timely manner, but as usual, that's not my strength! If I don't respond, I promise I will read it, probably cry over it, and honestly just feel so blessed!

I/we will do our best to share information as it comes in, so please do follow my journey on here if you feel so inclined!

With so much love (and a million tiny 💓 s)

Lianne