Good grief I don't understand why everything y'all try to do ends up a damn hassle. You must be frustrated as hell these days, Jake.
All I know about the patient advocate is that when I started treatment at MD Anderson, a patient advocate was assigned to me. I didn't have to do anything at all, it was just automatic. I don't believe I ever used the PA because everything at MDA was like clockwork, plus my oncologist gave me his own private cellphone number in case I ever needed it.
I'm just so sorry that Marie isn't receiving the same level of care; it's exasperating and unacceptable.
I agree with you everything is a hassle for us. Marie told me this afternoon; I am the luckiest ; unlucky person in the world, meaning having me and her kids to care for her. She's always saying little things like that, like she told me more than once; you are the best thing that has ever happened to me. I always tell her so are you; the "best" that ever happened to me.
But I did get a call back from pain management and talked with his assistant, who told me the the 29 pills, were the balance of Marie's script, so I told her, no he wrote "120", to take 4 a day, every six hours and pharmacy said they were on back order, and since ER doc had wrote script to change her off morphine, that he said was causing her dry mouth; which was 12 pills I didn't want her going thru withdraws on top of bone cancer pain; she said hold on the DR wants to speak to you. He got on the phone and I explained how he sent me to Lake City, only to get 29 pills, which will not get her thru until the next appt. 7-6-2026. We went round and round about it, and I told him that I had called the pharmacy here about the balance of script he wrote, to get her through until her next appt. and she told me they got pills now. And that she still has the script, and will fill it if he says it's ok. He said if you can bring her on Monday or Tuesday, I will write the script for two months. I told him she's not as mobile now, and unable to do that. He said we have to see her to write the script. I reminded him,last visit she was so bad y'all had to come out to the parking lot to see her, and you wrote 120 pills, to get her thru to July 6th. I asked if just this one time, let her fill the 76 pills and if Marie is doing better, I will bring her in, or you can move up her appt. to date she will run out after using the 76 + 29. He said you may need Hospice to get her meds, I told him, already had them and fired them, with advice from the ER doc who said they're crazy; then he put in a referral to Haiven hospice, and so did her cancer DOC.They never called us. But cancer Doc then put another referral to Community Care Hospice who did call, and I told them when we get a little closer I will call them back.
I asked again just let them fill the 76 pills, and if she gets better I'll bring her in, or I'll get Hospice, he said you repeating yourself and I have other patients to care for; I said then you understand what I am telling you, "right"? He said ok, just once and then that's it. I said thank you sir. I called the pharmacy back and told her, he said just this once; she said I'll research and be sure about laws, and as soon as the 29 are about to run out; I will fill them and call you for pick up. So another "hectic" day here, and wearing me down, and I'm holding on as best I can. Thanks to all of you for caring.
