Hey guys! Sorry for the lag in letting y'all know what happened at the onc's office. First of all, she didn't even bat an eye at the incident but it seemed to firmed up in her mind where she was wanting to go with me. First of all, I had lost right at 10 pounds since my August 12th visit. She was concerned I was throwing even on Zofran and, despite doubling up on the Lomotil, my stool is the consistency of vomit. Even with decent labs, excluding some of the liver markers (LDH was 1600+, alkaline phosphatase was even higher than usual), she thinks I'm ready for hospice care - more for palliative care, especially with the nausea and vomiting as well as getting help with my stoma if that need should arise again. Frankly, I was relieved but very apprehensive because of the cost. She also prescribed Haldol and Ativan to help with the stomach issues and the Haldol can also help with any anxieties I might be dealing with. Therein lies the reason for the lag in letting you guys know how it went -I've been sleeping a lot! And, actually have felt rested sometimes when I wake up! Woohoo! She was quick to assure that she doesn't think I'm at the end stage but she feels I need some care throughout the weeks between our visits. Gary and I were in total agreement even as our brains were screaming, "How're we gonna pay for this??!"
She sent in my favorite Onc RN who knows the score as far as our financial situation. She named a company that she really likes and one of those reasons is because they take uninsured patients. She made a few calls and said to be looking for a call from that afternoon. We weren't home long when she called and said she should be by in about an hour. Lovely and caring woman just like every nurse I've dealt with on this journey! She explained what she'd be taking care of - ordering my meds; taking my vitals; answering any questions she could and consulting my onc for things specific to me, ordering my ostomy supplies as needed and so on. I had had to go to the bathroom and, while I was out, Gary asked about the cost. She told him there would be no cost to us at all, for anything. I knew he looked a little strange when I walked back into the room but put it down over anxiety over me as well as how much this was going to be. After I made sure she had plenty of experience with ostomies, I, then asked about the cost. I think I came as close to fainting as I ever had when she said "There is no cost to you. Company policy. Can you believe it??! ME! The one who never qualifies for anything except her chemo is paid by the manufacturer! Even if I have to get a hospital bed or oxygen, they'll pay for it! They're even paying for my ostomy supplies!!
I knew God had a plan. He hasn't let us down yet but I was anxious to see how He'd come through on this one! As usual, it above and beyond anything I could have come up with. I'm telling this thread and a thread on the ostomy board and limiting who I tell in "real life", mainly to avoid the "You poor baby" and such as that. People hear or read the word hospice and start freaking out. One I'd the great things about this forum is the education I've gotten in the different phases this disease can take. If and when it becomes more serious, I'll probably let everyone who's interested know what's going on.
Frenchie, what a pain in the brain to learn you have more mets and that they're so happy, they're making babies. I'm not sure I understand all I've read about treatment - I think it's radiation if they can and Cyber or Gamma knife, whatever that is. It sounds like you're at what Ashlee used to cal "whack-a-mole" stage in this disease. Since you're not too hep on more treatments and you're not in pain, I'd say, Go for it!" Whatever "it" is for you.
Asteroid, I definitely hope the treatments bring you some relief from the bone pain and that you're able to go on your fishing trip.
Sky, I sure hope your baby's doing alright today. I always smile when I see your avatars.
Kpjpmom, thank you so much for the words of encouragement. I can always use them!
I thinking finally ready to go to bed here at 3:25 in the morning. Please take of yourselves!
God bless ~
Gwen