Yesterday I celebrated 5 years since my first dose of Keytruda. It’s bittersweet. It shouldn’t have taken so much. I shouldn’t have had to fight until almost my last breath to get it.
But I did. Pathetic creature that I was, cradled carried by my husband into an infusion room where I sat with a huge smile on my face wearing children’s clothes and a diaper, with my ever-present Winnie the Pooh blanket. I saw 1 kind face. The rest I saw turn from me in various shades of pity, fear, or ‘ew.’ I didn’t care. I was going to live.
About 10 days after that first dose I spent 3 hours with pretty bad pain in my chest. A normal person likely would have gone to the ER. But I now feared doctors more than death. I associated doctors with my death (still do). What it was, was a 12-14cm tumor and plural effusion burden finally leaving. It has grown, and crushed through one, than another lobe of my right lung, blocking the lowest lobe from getting air. But one 30 minute infusion. After having that crushed completely for 4 months meant the drug was working… not just working, but miraculously working.
Why did it take 7 months, 2 million dollars in icu bills, hospice and a plea from hell to get this $7000 bag of fluid?
Because I was stage 3A. I needed to be 3B. B!
Welcome, to FDA oncology regulations that kill people.
Because when I was stage 4, no, the doctor said. No.
now you’re TOO sick.
It’s all sanctimonious bullshit painted as healthcare and that’s why I don’t shut my mouth and leave everyone else to fend for themselves.
Full (frontal) interview coming this fall.
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