Best Of

Hi all. You know you get me a bit motivated to do something, anything, even if it's wrong. lol. I vacuumed and put up some laundry. Yesterday I made a big pot of chicken noodle soup for about 10. What we don't eat I like to freeze to be eaten on one of those yucky days. The roast was so good but I can't believe how small it was for $15. I think it was tip roast, not sure, but barely got 8 cuts of beef off it. Threw carrots in and used dales seasoning and some worchestershire sauce, a little water and we had fabulous gravy with mashed potatoes.

Next month means mri of brain and frankly it makes me nervous. The cancer in the lateral orbital wall, in the occipital bone and somewhere else that at the moment I can't remember (Skull) will always concern me. Debby didn't do any damage here, just a lot of rain but no flooding. When we moved to Palm Coast our best friends reminded to move west of I-95. Higher area and usually the evacuation zone is east of I-95. We've been lucky as no damage and we've been here coming up on 5 years. Knock on wood. DH still has the crud but sees his MO tomorrow. Hopefully then he'll get that chest x-ray. I haven't seen DH's blood test results, but up until now it's been 1 1/2 years, he has not had to start chemo for non-hodgkin's lymphoma. He's just real tired.. In pockets for all your needs and hope for pain free days ahead.

I try to remind myself that if I felt the way I do now (exhausted, low energy, diarrhea every couple days, etc) five years ago, I would've have been panicked and rushed to the doctor to find out what the heck was wrong with me.

Now, with MBC, my MO tells me I'm doing well... FOR SOMEONE WITH MBC. She does understand the difference, fortunately, and isn't assuming I'm tootling about with no symptoms whatsoever. I'm anemic, have minimal white blood cells for healing, bruise easily, feel oh so tired, and of course the fear slips in at times - when is it going to get worse than this? The weight of that fear is something I have to release over and over again, it's like a new skill. I do read her notes after our visits, and she's pretty good at accurately conveying what I'm experiencing, but I wouldn't hesitate to correct something - she once wrote I was dancing for exercise, when I mentioned I sometimes shake my bum in my living room to 80's tunes... not sure that's "dancing" but okay.

Totally agree about choosing battles, also. We all have limited energy.

@sf-cakes Some time ago on here, @tarheelmichelle wrote, "I'm not going to hang out by the exitdoor. Not while there's a barand a dance floor!"

Medical records issue- I have noted multiple discrepancies before in all my different doctor's notes. I try to get a copy of the office notes, whether it be thru a patient portal or asking at the office and signing a release form. I like keeping my own medical records. Sometimes I just shake my head when reading the notes. Yes, they use a template and just add their own notes to it. I have found comments about listening to heart and lungs when the doctor never touched my body. Or, once, I read that the doctor suggested this, this, and this and No, he did not bring up all the items he listed in the note.

I have never asked any doctor to correct their notes. Maybe that is wrong. I understand Mel's comment about Social Security coming across that note if they review my SSD case. That is a fear. But I don't know if I should make waves with my MO by asking him to remove the comments he made in his note about my joint pain, as that is non-cancer related (arthritis issues), or about my energy level.

I am a type A personality and very detailed oriented. Most are not. I could be perceived as being "picky" if I would bring out these errors to my doctors. Like a problem patient looking for an issue.

Thanks micmel and mara for tips about rinses. I'm losing my sense of taste. I couldn't taste my strawberry rhubarb pie and ice cream just now. Just tasted mushy and cold. I'll try to put up with this through next scans but I'm not sure I can put up with this very long.

About doctor's notes, it seems they use templates that are just edited if something is abnormal. I don't think my records are very accurate either. Notes don't always record what I remember saying. They mess up the rib numbers on my mets rads reports. It's really aggravating to me because I worked as a medical transcriptionist and had to get everything perfect. I was expected to catch and report discrepancies. Now they just use auto templates and speech recognition, leave all the errors and put a disclaimer at the end. If you see errors, you can ask for it to be corrected.

Carol, I had FBG issues while on Afinitor also. I hope it works well for you but it was not a good drug for me and I wasn't on it long. Unfortunately for me I was also on a steroid for lung issues right after I stopped it and had crazy FBG issues for a few months. I don't want to go through that again.

Candy, make sure you discuss the notes issue with your MO on your next appointment. It is part of a permanent record and needs to be accurate. Just do it tactfully. "I noticed you said…perhaps I didn't communicate things well in my present state…etc." Most doctors will acknowledge a correction and note it during your current appointment.

Irish, husbands can be so stubborn sometimes! Ugh! I agree with you and would avoid him also.

irish, I'm sorry your DH won't get himself checked. I'd keep my distance, too.

candy, I've had occasional notes like that. Frustrating. No complaints? Seriously?

mel, I wish you weren't having ongoing issues with your mouth. I'm thankful that the dexamethasone seems to be keeping mouth sores at bay for me.

My blood sugar (FBG) was 122 this am. It's usually between 85 to 98. I'll check it again in a while. Elevated FNG is a SE of Afinitor. Hopefully, it was just a wonky reading. I did have one reading of 25, but my DIL was here at the time and said to retake it. Her dad is Type 1 diabetic. She said I'd be seriously in trouble if it was actually 25. I re-took it, and I think it was closer to 85. I track my numbers on an Excel spread sheet. I added a FBG tab to the CBC, CMP and LIPID panels. Did I mention I love spreadsheets?

Waving hi to everyone.

Carol

Shortly before my dx, I was in the ER after a motorcycle accident. Somehow, one detail of the visit was coded incorrectly and my HRT was coded as long-term opioid treatment (yeah, not quite thecsame thing). The codes were the identical, except one code had 2 digits after the decimal and the other had 3. I was actively and adamantly trying to get it corrected, because it could/would have created major problems for me with regard to my job. I was BS'd, flat out lied to, then ignored (no returned calls), by what I'll assume was lazy personnel. After my dx, and disability retirement shortly thereafter, it was no longer worth the effort. It's still infuriating to have been so disrespected and disregarded over what was clearly a clerical error. If it makes me "picky" to require a correction, then so be it.