Would you like to know what it means to be a caregiver?
It means always…ALWAYS putting them first.
Tonight is not about me.
Tonight is not about my journey, or those around me…at least not in regards to ALS.
Tonight is about her.
Her bravery, her strength. Her beauty and love that shines through her eyes and her smile.
She tells me I am the courageous one, but I wonder if she ever stops long enough to look in the mirror. She is battling something she has little control over. The only choice she has is follow the doctor’s orders…and pray.
And still, she keeps moving…one foot in front of the other. She keeps pushing forward and she keeps fighting.
They have drugged her and cut into her body. They have poisoned her, day after day… and still, she keeps pushing forward. They give her statistics and case studies, and long tedious answers about the latest therapies, and percentages… and still, she keeps pushing forward.
She usually hides behind her wit and her charm. Her smile and her charisma. But tonight, she shared a piece of her soul.
I can’t take any credit for it, I wish I could. Because when people show up, and are real, and jump up and down and say,
“Hello world, look at me!”
they shine brighter than any star. And she has always had a presence about her, the kind of natural charm that most women envy and men desire. But tonight, she stood up, and shone bright for all the world to see.
I am not moved to tears often and this one left me rocked to my core.
Kristina ~ I am so incredibly grateful you are in my life. You are all that any woman aspires to be. You are brilliant and kind, and you show grit and determination when others would have buckled by now. Trust me, telling your story is not vulnerable. It is gut-wrenching…and it is beautiful.
The world needs more women with your strength and your grace.
I can only hope to one day shine as brightly as you do…
Here is just a small piece of her story…
How do you get through two radiation treatments in one day? Two spa treatments, of course!
That’s the positive side. Here’s the ugly side.
One week and a half left, if my skin can take it. If my mental health can take it. They said radiation makes you tired.
There’s no physical reason. It’s definitely mental.
Every day you go in, partially disrobe and lie down on a hard table. Arms are stretched above your head, goggles on. The entire time three to four people move about the room, aligning you, adjusting you, drawing on you, radiating you.
Arms go numb from the awkward position, but you can’t move. You itch, but you can’t scratch.
“Breathe, hold it. Ok breathe. Let’s do it again. This time hit the middle of the box. Now we’re ready. Let’s go!”
And repeat multiple times.
The breath holds are challenging for me. Sometimes I wiggle my fingers so they can see in the camera that I’m about to pass out. Holding your breath pushes the heart down and out of the way of the beam. Nobody wants a radiated heart. I certainly don’t.
When I breathe, a yellow bar rises. I’m to hit the center of a green box above it. It looks like an Atari game in my goggles.
I’m frustrated when I don’t hit the precise spot they want me to hit. So frustrated that sometimes my eyes well up. When I feel the water trickle down the side of my face I get even more frustrated “Hold it together.” It’s become my inner chant.
It’s all quick. 15 to 20 minutes most days. But it seems longer.
I’m tired after. God I’m tired. Not because I do anything, but because I’m confronted with The Cancer every day. I’m confronted with my mortality every day. It’s exhausting.
I lie there, my chest ravaged and my skin so red, peeled and on fire it hurts to move. I’m exposed and it’s uncomfortable, awkward and cold.
Then I’m done. I hop off the table and wave my tingling arm. “See you all tomorrow” and I go put on my clothes.
I look in the changing room mirror examining my angry battle wounds. Who is this person? How the hell did she get here? I slather on Aquafor and off I go.
Some days I just walk out as if nothing happened. Other times I linger to dry my eyes. I’ve never fully cried there, but I’ve come close many times. I save it for when I’m alone. Instead I suck it up and tell myself “Hold it together.” It works.
I hop into an Uber and either head to the airport or to a place here in Seattle, depending on the day of the week. Sometimes I walk, if I’m close enough. I did today. I like those days. I get into my head and get closer to God.
That’s daily radiation. Although today I slipped in two glorious spa treatments … just because.
Most of my posts about this topic are generally positive. I’m not nor have I ever been comfortable being vulnerable. So I tend not to share that side. But I’m inspired by a woman who so often shows the vulnerable side and I have learned a lot through her and her honest -sometimes brutally so – insights into ALS and the journey she and her husband are on. Theresa Whitlock-Wild shows me daily that it’s ok to drop the veil, to be honest and vulnerable and then gather up the strength and continue the damn fight. Thank you T. ❤️
So this post is meant to share a little insight into my journey and the journey of so many of us who have, had and will have breast cancer.
I think about my cancer sisters who have gone through radiation before me and I want to hug them tonight. I know what misery they went through. They are warriors.
I think about all the women who will go through this after me, not just the radiation but all of it.
They don’t yet know it. But they will be warriors, too.