Courage. Strength. Glass more than half full. Positive attitude. My state of mind affects those I love and care for. For months now, I’ve lifted my chin, fisted my hands, and walked the walk.
But there’re days when everything crumbles around me. Yesterday was one of those days.
And why was that?
After two hours on the phone with two different ‘specialty’ pharmacies, I was told that one of my chemo drugs costs over $7,000 a month and no, they can’t get it to me by next week (This is a long weekend, after all, and I was speaking to them on Friday!) when I’m trying to start my regimen with it. This is the same drug that helps me dream of next summer—maybe two summers. Needless to say, the tears let loose, and then the doubts, and next the ugly questions of what is a life worth? I’m not going to give you a lecture on the economics of what’s the life worth. But the question in my mind is—in the amidst of chaos and suffering in the world, can one person really make a difference?
Then, the second shoe dropped. Over these past months, as Jim and I have been trying to get away from the reality of my sickness by losing ourselves in writing, we’ve done no advertising, no promotions, no outreach. Nor have the publishers who have the rights to our books done anything, so as a result, our sales have been declining. But yesterday was the worst ever as the returns on Amazon sales had our account in negative dollars. (Yes, this is a thing. Readers read the books then return them and get full refund from Amazon. Meanwhile, Amazon charges the author for high ‘delivery fees’.) Okay, the tears fell even harder.
Then, my pain level shot up and I couldn’t even stand up straight. I have ascites, and when it flairs, it has my stomach feel like disembowelment.
So, is there anything positive in this story? Am I full of ‘oh, poor me’, while people all over the world are experiencing feelings of fear and despair? What’s the role of one person? Does one person matter?
The good news part of this post…the head oncology pharmacist at the hospital I go to (it’s not her job to get involved as my insurance has them out-of-network), stepped in and called my insurance company. My diagnoses were finalized this week, and insurances move slow. She did her magic and got them to send their approval letter. Then, she put me in contact with Novartis (the pharma company) and told me about their rebate program to help with some of my co-payments. She also called CVS Specialties and demanded that they overnight the drugs, so we’ll be ready to get started next Wednesday. Marilou, the angel in the white coat, did all of that out of compassion when she heard me fall apart on the phone.
The Amazon part of this story? It’s sad, and there’s nothing I can do about it but hope that readers realize how much they’re hurting writers by reading and returning a book a week later. And as far as the rest of our income, there are only so many hats Jim and I can wear now. And those stresses are continuous.
Another nice part of the day was getting two flower deliveries from friends and also cards from (you know who you are as you’re reading this, and you’ve been sending me so much love and encouragement over these months).
My state of mind at the end of the day? Never underestimate how much one person can make a difference, even if it is just as simple as giving a smile at a stranger walking by or sending them a love you, thinking of you over the Internet. Love you, friends. Keep the smiles and virtual hugs and encouragement coming.
