My Husband, My Life, My Love, My Family, My Cancer
Comments
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Moth- always in my thoughts
Emac- yay for stable bone scan. Also in your pocket for CT
Mae- hope you are starting to eat a bit and keeping it down.
Mara- in humid weather I won't even walk down the road. I'd be crying too. Just know your limits and don't push yourself!
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mara, that's good news about your property managers. Thanks for posting the image from Airplane!
mae, I hope you're feeling better today.
moth, you'll be on my mind all day today.
Hugs, Kleenex, and snacks for anyone who wants to eat.
Carol
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Moth in your pocket for today. Support and hugs.
Mae I hope the sips are getting better ❤️🩹 and you get to a better place of tolerating this treatment.
My daughters going away for the weekend. This is the first time she's ever been away from them except going to work. They're 10 and 7. I'll try to keep them busy with my no energy self.
Take care all
Tany
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Mmmm…. Fish tacos. Growing up in Southern California, fish tacos were delicious and readily available. Not so much elsewhere but Houston does have a Baja cantina restaurant with awesome fish tacos, I had 2 last week 😃 I highly recommend but pass if the use lettuce instead of cabbage on top, it needs to be done right.
Still having mild nausea but better so far. Too tired to help DH get ready for friends coming out for the weekend but my strength will return as my nutrition improves.
Big wave to all reading, the friends we know and those who read along anonymously.
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Tanya, I can empathize with no energy, that is how I am feeling today after my Herceptin yesterday which is too bad but there are worse things. I am sure you will find fun things that you all can do and hopefully the visit will fill you with much needed energy.
Emac, glad you are stable. In pockets for any other tests I may have missed out on for sure. I do have some trouble keeping up even as I post.
I did figure out something that I could do to make it easier on garbage day for myself which is put my container out first and add the bags one by one after. I would never have 40lbs of garbage to take anyway and I will still collect in my own house. We will see, no bins as of yet.
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Moth - you're pocket is really crowded, but I'm edging my way in with gentle hugs
Emac congrats on stable.
Tanya - those kids are old enough to entertain themselves for awhile. Be sure to take a break when you need one.
Mara - it's about time your new property managers improved something!
I'm still working on the prior authorization for the blood biopsy. Insurance rejected it for more info. I called them to check progress (before contacting my doc's office) and it turns out they made a mistake, so it's moving again. I hope it won't need any additional "babysitting" but I'm not confident of that. I'm pretty sure it will go through in the end - once everyone has what they need and does what they should do...correctly!
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SeeQ ~ always have to follow up with paper work for sure. Seems like no one does their job anymore. Hope it’s done Soon.
Tanya~ pace yourself with your grandchildren so you don’t over do it. I envy you. I have no energy ever. Have fun !!
Mae~ maybe I’ll give them a try. Sounds delicious.glad you’re a little better. How are the pups ?
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Mara~glad they are doing something you’re happy with !!! It’s always something with them.
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Emac, happy news for the good bone scan! Hoping the same for the CT.
My MO called me yesterday to offer me a spot in a new clinical trial. He’s not feeling confident about my current chemo combo and ordered a ct for Monday. If the results show good improvement then I’ll continue. I also have an appointment with him Monday after the scan, and will meet with the trial team about the particulars. I’m a little bummed because this chemo has been pretty easy and I’m getting i at a local clinic near me. The trial is definitely at the main campus of my system and most likely will be tougher on me. I’ll wait to hear more.
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Sunshine - How frustrating! I hope you can get that done on the 15th. The shortages seem so random. My CT was with contrast today and I was not aware of any shortages in contrast but I know at the hospital we are running short of some chemo's and bagged fluids. The list changes week to week. It's scary.
Mae - I was surprised to find this truck in southern Oregon and it's actually a BBQ truck that happens to do fried fish tacos too. We are not known for good Mexican food. I miss that about Arizona. These are fried with cabbage and tomatoes on top and a cilantro lime dressing. I don't splurge often but it was worth it yesterday. Glad to hear you are feeling better and I hope you can enjoy your visitors this weekend.
CT results are in and stable also! It correlates the spots in my spine that seem a bit worse. I don't have new tumors but at T8 and S2 and in the sacrum I have increased uptake on the bone scan and "prominent areas of sclerosis" on the CT. That makes sense to me. I have had increased back pain in those spots. The pain is annoying but I am really grateful right now for no progression, especially given what this group has been through the last month. I've started taking Norco during the day if the pain gets above and beyond what I can tolerate. I have tried to stay off the opioids and use them sparingly at night but the Tylenol/Ibuprofen regimen is just not cutting it any more.
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Emac, yay for stable! 🎉
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Emac- way to go for stable!!
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Glad for stable results as well.
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emac, definitely gotta have the cabbage, tomatoes, and cilantro-lime sauce on the fish tacos. I'm glad for the stable. Hopefully they'll be able to locate the CT contrast dye soon.
mae, I'm glad to see you posting here. I hope your nausea is abating.
rosie, I hope you get to participate in the clinical trial.
mara, any more progress with the trash situation?
I can't stop thinking about moth. I hope she's comfortable tonight after starting this new chemo. If you read this, moth, know that you are cared for and, dare I say it, loved?
Carol
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Mae, I am glad to see you.
Moth, hoping you are doing better on the new drug as well. In your pocket.
Good luck on the trial Rosie.
Sunshine, I am not too worried about the trash. The only difference between what I do now and what will happen is we are to put garbage out front in a trash can. The city will pick up black garbage bags so I will probably keep a trash can given to me in the house, do not trust people not to throw garbage in there and use it to corral my recycling and put out trash for the next day by 600pm which is how I used to do it. Bonus is there will not be a pile of garbage waiting to be picked up out back. I do hope to receive a blue box but I may also ask for 1, take a big marker and write my address since the last one was stolen. Otherwise, recycles will go in a blue bag instead. I plan to put out garbage on Sunday night for collection Monday and each unit is allowed up to 3 bags weighing no more than 40 lbs each. Will be fine for me.
It is a nice day so deciding if I want to go out. I am sort of busy with laundry I need to catch up on, bits of housework and surveys. Really trying hard to stay within a budget and not have to take from house sale money so surveys and other activities help with that. Maybe walk after meals. I also need to eat smaller, overestimated and had several eggs with cheese which tasted good and if I stopped there, would have been alright but added chocolate milk to the mix and nope, uncomfortably full last night. Need to scale back for sure.
Hope everyone has a good day, pockets for everyone that I cannot keep track of, I just keep infinite pockets for this group.
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Emac- Woohoo for stable !!!
Rosie- Pocket duty from here.
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Hi Rosie,
What treatment are you currently taking? Just curious…
Hi to all of my MBC sisters…
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mara, sometimes I get tired just reading about all you do!
Hi to all, moth, thinking about you today.
Carol
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Thank you for the congrats.
Also thinking about Moth today.
Hello to the group. I hope you are all doing well and having a good day.
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I am going to ask the group as a whole about this because there may be some who cannot handle food talk.
I usually post a meal if I am doing something different to what I eat or whatever. I have not wanted to as of late as there are those who are sick and maybe cannot stand the mere mention of food.
I want to be sensitive before I post and I will not be posting any repeat meals either. I know we talk about what we are up to here as well as scanxiety, family or mental and physical issues. Please let me know, and know that I will only post something new I made myself that tasted good.
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mara, you're so sweet. I hear you on not posting about food. There are some days when even the mention of food turns my stomach. Maybe we can start a separate sub-thread called "mara's meals."
Carol
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That is the best! Don't think I have enough material for an entire thread. I did have a nice lunch. Cooked 1/2 cup white rice in water liberally seasoned with garlic powder, took that rice put in the frypan with garlic spread, 1/4 cup beefless ground and sprinkle of cheese. Cooked on low couple of minutes and then added wheat bran for fiber and salt with small spoonful mayo to combine, really good. I could not resist this.
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Booboo, I’m currently on Gem/carbo. Gemcitabine and Carboplatin.
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More congrats to Emac for stable scans!
Mara, thinking of you crying due to the humidity while walking home, and the relief of taking clothes off at home. Humidity is not my friend, either, I love New Orleans but only at certain times of the year since otherwise I am just a puddle of sweat. Ugh.
I so appreciate Mel and Elderberry's recent posts, have to remind myself none of this is my fault. Even though my mind wants to blame me at times, like I shouldn't have had a few cigarettes back in college, or eaten so much Häagen-Dazs straight out of the carton...as if these are the reasons for this diagnosis. These thoughts aren't helpful but they show up sometimes.
Thinking of Moth, and hoping Mae can eat a little more without nausea. Hoping Rosie can get into the clinical trial and that it will do good things.
Thank you to booboo, candy, 50sgirl, sondra, sunshine, tanya, seeq, living, and everyone else for being here. (I'm also hoping this new redesigned platform will allow Capital letters in our names again soon...)
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I was able to get my CT scan scheduled. Apparently, oncology patients have a higher priority in getting the CT contrast dye. There was a bit of dialogue going on between the schedulers and the radiologist, but it all got worked out. They even managed to work me in between the time I get the nuc med injection and the bone scan.
Am feeling thankful for that.
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Rosie- in your pocket for Monday’s scan. Hoping either you can continue on treatment or the clinical trial is a good one.
Emac- yay for stable!
Moth- still thinking of you throughout the day.
SeeQ- I understand about babysitting the Dr.’s office. I just called yesterday to ask where my disability paperwork is. It took 20 minutes to talk to someone to “put a message in”. Then someone called me back and said the NP had the paperwork and was going to call me. About what? My diagnosis? I have Stage IV cancer, yo. Never got a call. Gave them the paperwork 15 days ago. Update: they just called to ask what my issues are to put on the form. I have stage IV cancer in my brain y’all, my money maker. Where do I start?
I’m a bit embarrassed to say I haven’t stepped foot out of my house since last Thursday, 8 days ago! It’s hot here anyways. DH has only left the house to go to the grocery store two blocks away. He’s going a bit crazy. Me? Not so much. I’m a homebody at heart. I have a craft project I’m working on but today I watched She - Devil from the 80’s. Meryl Streep’s character is great. Rode along to pickup some curbside orders further afield and stopped by Bill Millers (local texas chain BBQ) I get the bean and cheese tacos though. Back home now
Fish tacos are hit and miss with me, especially when delivered. They don’t travel well. Now fish n chips with some malt vinegar at a pub I can get behind.
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Kikomoon, what "issues" to put on your form?!? Good grief. How can they be serious with that question. Sending you support and love, while dealing with ridiculousness.
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Moth I was so distressed to read about your progression. I hope you don't give up, we can't lose you. Praying hard. Have you heard of Nagourney in the States? He has had results with stage IV's.
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seems like a difficult week for a lot of us here. I’m
Thinking of you all Moth. Hope you’re ok.
BooBoo you too. love to al
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Moth - thinking of you all day. Hoping for the best possible outcome.
Kikomoon - in my experience, it's helpful to 'put their words in their mouths', so to speak. If you tell them what you want them to say, you stand a slightly better chance they'll saywhat you want...
Vent warning...
My prior authorization was returned, citing incomplete information, again! It turns out the whoever at the doctors office submits the requests completely ignored my detailed message in the portal that included the eleven billing/procedure codes the lab provided, and instead submitted a request for an office visit (one code - incorrect, btw) with incomplete information for even that! I am frustrated beyond words. I'm considering different approaches to resolve the issue - not the least of which is ratting out the whole bunch to the doc when I see him next. I think he'll be displeased. There might be another option to consider before then, but I'm losing my patience.
Ok, vent over. Thanks for listening.
Rosie, Booboo, Mel, LivingIVLife, MAE, SF-Cakes, Sunshine, Mara, and everyone else
- wishing you a peaceful and happy weekend.
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