How much is a life worth?
To pharmaceutical and insurance companies, according to my life, one prescription is $4000 a month. That is after the insurance got involved. Try GoodRX? Sure – the cheapest one is $14,910 a month. The way it’s flippantly asked of me is shocking. I got a call from CVS specialty pharmacy asking me if they could ship me these pills.
I said, “Yes, thank you!”
He said, “Okay, we will get that going.”
I said, “Great! How much will that be?”
He said, “Yes ma’am, that’ll be $4000.” Like, that was somehow okay with me. Like I was about to readily agree. Dude. I don’t even make that much a month. Jackwagon!
I shut that conversation down really fast.
The medicine whose job it is to stop my cancer from spreading and growing.
The medicine that could potentially give me years longer. That’s the one…
If you can sense the distaste and anger, you’re right.
Luckily my beautiful-hearted nurse is going to help me get it figured out. I don’t know what I’d do without that.
I think the medical system in our country is a travesty. People cannot get access to the care they need. They don’t get the exact scans the doctors know might be best. You wait for insurance to approve treatments. I was diagnosed on November 11th. I am starting radiation on Monday, December 12th. A month. A month of my cancer doing who knows what.
Speaking of radiation…
The Mask
Last week, I went to get fitted for this mask. But I am starting to think the word “mask” seems a bit too docile for what is happening. I had looked them up, and I knew it would be challenging.
The doctor had asked me if I was claustrophobic. I said, not especially… I can usually talk myself out of panic, and I’ve been in some tight quarters. But now I’m realizing that asking someone if they’re claustrophobic in relation to this mask is actually an unfair question. There should be some new question asked of people for this mask. Something like, are you okay with torture devices? Or have you ever watched Silence of the Lambs?
The lady started off by lying me down on a stiff table with a head rest. Knees up, insert the triangle. Strap my feet together. Check. Ready to start.
She brought the mask over. It’s a mesh-like substance. It seems a bit fiberglass-like, but I am sure that’s not what it is. She laid it down on my chest and gently folded it up until my nose went inside a hole. Then, it was slowly worked over my head. It felt okay at first. It was warm and soft. I can do this.
Then, she started to attach the thing to the table. Tightly. It was still stretchy-ish.
She put a fan on me, which I always appreciate. I can do most things as long as I don’t get hot. The fan was to harden the mask. Then, she left the room. And things started happening to me. First of all, the mask was beginning to harden onto my eyelids and my mouth and throat. It was getting tighter and harder. And, I was left alone.
I usually close my eyes when I’m in a tube and try to concentrate. Nothing is touching me. I’m okay. I know it’ll be over soon. But this was different. I tried to close my eyes and do the same, but I was being slowly vacuum sealed onto this stiff table. I could no longer open my eyes, move my mouth, and it was difficult to swallow the extra saliva that had started to annoyingly accumulate inside my mouth.
My thoughts start.
You’re okay.
Nothing is wrong.
This will be over soon.
People do this all the time.
Just breathe.
It’ll be over soon.
Then I had my dry run yesterday. I had already talked myself into being okay. But I was nervous. The mask makes me nervous. It’s very intrusive on my psyche. I walked back into the “vault” where the machine is that will be doing my radiation. The people there are incredibly nice. The best of the best.
I took my jacket off and got laid down on the table. Here comes the mask.
I got my nose in the hole and my chin where it needed to be. It’s not so bad after all. But then, they attached it to the table. And it was REALLY tight. Like, pounding forehead tight.
Things started to happen again. I almost tapped out. My head was pounding. My body is trying to fight against this new threat. I moved my hands to wave to them two times, but I stopped myself. My thoughts to myself:
You’re okay.
If you tap out, they’ll just put this back on again, and we will have to do this for even longer.
People do this all the time.
There were three more masks in the cubbies.
My mind finally started to calm down. It took a solid 5 minutes of sheer terror for it to calm down. I was tense, fighting against this unknown enemy I had never faced before. My jaw even started to shake – what little space it had.
I think people underestimate my ability to be perfectly still. I think I could have laid so still while this machine did its thing, but I was trapped like some monstrous being that might actually eat them alive. Then, they had the audacity to ask me questions. “Mmm, hmmm” was all I could manage.
Needless to say, I stayed sucked to that table for about 20 minutes. I was still- dry run done. She took the mask off and I said, “I hated that.” She looked at me in a shocked way and said, “Oh really??”
Girl. Yes. It’s horrible. Perhaps I’ll get used to it, but not that day.
She took me to get my schedule, and I tried so hard to not let her see how much I was shaking. My teeth were chattering.
But I did it. I’m wondering if I’ll have to give myself a stern talking to each time. Maybe so. We will sure find out.
We say- none of us know how long we have. Sure. Yes. That’s so true. But then, what happens is that normalizes what I’m doing. And this isn’t normal. This wasn’t in the Instagram plan I had for my life. This isn’t normal for anyone. I’m 45 years old and I have no idea if I’ll live to be 50. No clue. I don’t feel like I’m dying, at all. Should it feel worse? Somehow? Maybe I’ll live a long life against all odds. Maybe I won’t. I have no idea. Which makes my priorities pretty damn good. I’m like- really? You’re going to get mad at the grocery line?? Really?? And really?? You’re going to hold this grudge that you can’t even truthfully pinpoint where it started?? You’re going to do that? What a waste of your life.
Drop what you’re doing and go tell someone you love them. Tell them what you like about them. Why you’re grateful for them. Don’t leave anything unsaid. And don’t spend time on ugliness.
I hope I get to see you, sweet boy, before I die. I hope I get to ask for your forgiveness. I hope we get to sit and talk. And I hope I get to beat your socks off in a board game. I miss you. And I love you.
Protect your heart from the ones who steal from it, but don’t close it off all the way.
Be your beautiful, authentic self.
Onward we march in this cancer journey. Thank you for joining me on my journey. I hope you can find peace laced with humor in my writing. More than anything, I hope you can find authenticity. I want to speak this with raw, real truth. Thank you so much for sharing my posts and thank you even more for reading them. I hope that my words speak someone’s truth. I hope some words can give peace to someone about to go through it or someone who has already been through it.
One day, mountains.
Love to all.
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