My Husband, My Life, My Love, My Family, My Cancer
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Hi Gals,
In everyone's pockets for scans and appointments. I will bring the rest of the 3 layer chocolate cake I made yesterday!
Mara-I probably would have stabbed that bent fork right into the nearest wall! I find I also get really PO'd and teary when things don't work. I think "I have enough to deal with, so work, dammit!
Moomala-I spent all winter feeling half dead emotionally. i feel very lucky to have come out of it. For me a lot could be attributed to the low sunlight. I hope your mood lifts ASAP; it feels like prison when one is in a low place. thinking of you.
Getting old waiting for insurance to review the request for my Y90. Wanting to get going on it. My MO will go to bat for me if IR's office does not hear soon.
Sending the biggest warm hugs to everyone as we slug through the twisted world of MBC,
Mary Jane
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I just got back from my monthly checkup, Bloodwork is good. My MO told me she is moving to another center. I'm so disappointed, I really liked her. I'll meet my new MO after my PET. Changes suck.
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I just got back from my monthly checkup, Bloodwork is good. My MO told me she is moving to another center. I'm so disappointed, I really liked her. I'll meet my new MO after my PET. Changes suck.
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I hate it when a doctor switches. Just had it happen to me last week. So upsetting.
I just wanted to mention. That we crossed over 15k posts that's amazing. I never dreamed our living room would Do so well and I welcome everyone with open arms and all the support I can share. You're all good women and I'm proud to. Call you cyber sisters. Glad your bloodwork was good Simone!!!
Going to try to sleep , thank you for sharing with me here everyday you wonderful bunch of ladies and men. (Daniel) Lets keep it going as our living room family. !! Love to all. Good night.
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Mmmm, cake. Jumping in for pocket duty too.
Welcome imagine
Hi ladies 👋
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Mae~ 👋 right back gooey chocolate cake Yes please Illl bring. The wet naps and the disinfectant! Gotta social distance grub! Hope you’re soundly sleeping now. Insomnia smacked me in the face again. Wham. I’m understanding that it has something to With my dinner. I’ve been on a barbecue chicken kick lately. Maybe that’s it. Off to try again. Sleeps runs from Me. !
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The thing about taking a break for a couple of weeks is you realise just what a roller coaster we are all on, just skimming through posts gives a real sense of that.
All on a go slow here as not allowed out at all....so grateful for my garden. Clinic tomorrow for bloods - first in 8 weeks as had a 1 cycle break from Ibrance on advice from MO. Oh and I am now formally retired...total shambles of a process as everyone working from home, letters lost in post and 33 years of service unmarked. I did receive loads of lovely messages from colleagues though and lots of we’ll catch up properly when this is all over.
Thing is no idea when that will be and likely will just have to draw a line under it. Sad about that
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Karen- Sad that you could not celebrate your retirement in the normal fashion. 33 years is an accomplishment !!! I was at my career/job for 26 years when I retired this last December.
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Karenfizedbo15 — in your pocket tomorrow for blood work.
Ref retirement: I feel that strange feeling of a quiet end to working. The last day I worked was in Jan. After getting out of the week stay at the hospital, I realized I couldn’t work full time due to pain, side effects, and large number of doctor related appointments. I retired at the same time my state went into a lockdown mode. So suddenly everyone was home, too. My retirement turned into quarantine (like everyone here). Nothing like any dreams of one day being retired. No celebration for “retiring”. I simply joined the masses who were staying home.
Let me say to you- congrats on your years of service. Tip of the hat to you. Job well done.
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BooBoo1— congrats on stable CT scan.
What are Yokos Hot Dogs? I did Google it and found it’s a local place that serves these dogs. Please tell me more. Sounds interesting. There is a place outside Chicago that we stop at for hot dogs (Gene & Jude’s). Yokos Hot Dogs has me int
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Thank you Dodgersgirl, it makes me feel a bit better that there are others in the same position retirement wise.
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Tanyadjamila— sorry you are having to deal with big D. That’s a SE I am too familiar with. Hope yours stops very soon.
Candy-678: in your pocket tomorrow for you CT scan and bone scan. Will be munching on M&Ms from Tanyadjamila. Will try to munch quietly. Don’t want to make you giggle because it’s too easy to pee your pants while giggling. Have you seen then current commercial for Poise pads where they say the lady in the commercial has Poise in her pants? I had poise in my pants for my scans. It was an insurance move. I had to drink 32 oz of water 30 mins before CT scan and drink another 12 oz right before the scan at the cancer center. I kept telling people that drinking all of that water at once would turn me into a Betsy Wetsy dol, in one end and out the other. Poise in my pants for sure
BevJen— in your pocket today for your CT scan with contrast. Hoping for great results.
SondraF- will be in your pocket next week for your injections and pills. Train ride sounds fun. Hope we can see out the window while in your pocket. I have a Five Guys burger about 1/2 mile from my house but it isn’t open during my state’s lockdown
MJHJAN1014– ooooo, 3 layer chocolate cake. Mmmm mmm good. Thanks for bringing that for pocket duty. Hoping your wait on insurance approval for Y90 gets resolved quickly.
Simone80— great news on good results on monthly checkup and bloodwork. Hope you will like your new (unscheduled change by you) MO. My original MO retired and I am learning the ropes of my new MO. We have enough to deal with. Changing doctors isn’t something we expect to have to add to the list of new norm changes
Mara51506– reading your story about getting faint and overheated while grocery shopping and wearing a mask was alarming. I do feel like I struggle breathing while wearing a face mask. Last week when I had CT scans and bone scan, I had to wear my face mask during entire CT scan process (yuck) but was allowed to remove my mask during the 30 min bone scan (so thankful)
Illimae— happy to see you posting. Hoping you will see positive changes as you near 6 months out from your surgery.
Micmel— hope your dh is over his cold. Did he return home yesterday? Insomnia sucks. Why can’t we just go to bed and get a great night’s sleep each night. Gotta say your writing about your feelings about being replaced with another woman hits home. Don’t we all want to be so wonderful that we can’t be replaced?? I can tell you that the life my dh and I are living right now isn’t anywhere like our dreams of retirement. These days suck. Not being able to plan trips or car rides while my health could still allow, is frustrating. It’s like beings told you are going to die plus we are locking you up so you can’t even go out fo an ice cream cone.
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My province is doing a phased reopening and today some restaurants and hair salons etc opened. I was told that this period will now be MORE dangerous to any immunocompromised person because inevitably there will be more potential for community spread. So if my dh or my parents go to the store, everyone they might come in contact with is now more dangerous because they're in contact with more people....
& I was like - sigh, I thought I could relax a bit but actually I have to be more vigliant! seriously, this sucks
I spent an hour talking to my mom on the phone yesterday and that was nice and she gave me some practical zopiclone tips and anyway, I slept 7h and don't have much pain this morning so I'm feeling more cheerful.
I keep being surprised about your contrast for CT. Our is IV or port if you have a power/CT port. We need to drink lots before just to make our kidneys nice and hydrated but we don't have to hold our bladder. We don't drink anything. Just zoom in the machine and they put in the contrast through the IV. Then we're told to drink and pee lots for the rest of the day to flush the contrast out.
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Dodgersgirl~It haunts my dreams. I searched my life for this man. I'm going to fight until I am skin and bones. No one is getting my beautiful husband. It is sucky not to be able To do those rides or trips. I get so mad about it. I love him so much and he takes Care of me so well. So much I feel guilty because I just can't do certain things I used to do. He's such a good man. I would not want to live with out him or my family. That's why I'm so thankful to be nead now for four and a half years. I pray for many many more for us all. After all , we deserve it. We do nothing but mental and. Physical battle. Daily. When do we get our break. ? Even though I am nead the damage is done. No improving chemo damage. He saw it all and was wonderful. How can someone be so blessed in life with people and my homeeverything, except my health. My doctor called me a healthy cancer patient. I looked at her funny. She said well... you are. Then how come I feel so badly every single day/second? Ugh! So annoying.
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Moth— my center dose CT scans with water (for abdominal view) , too. Have to drink 32 oz water within an hour of the test time. Then drink another 12 oz water before the scan. Peeing is allowed. They just want the bladder and kidneys to have had water right before the scan. So after water is consumed (and voided), Scan is done, then contrast added via my power port and scan done again.
Ref Covid19— as my state reopens, those special store hours for seniors and immuno compromised will go away, too. So things will return to the norm for people other than the sick or elderly... we will be stuck at home without a chance to shop those special hours. Sigh
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Not looking as pretty now, but still yummy!0 -
Wow!! That cake looks delicious.
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Dibs!!
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Dodgers- I was laughing at reading your post--munching on M&M's, Poise pads, Betsy Wetsey Doll. I have seen the Poise commercial. I don't have any at home, though. I do still have period pads from those days (before chemical menopause). I could wear one of those for protection.
moth- My CT scan is ordered with oral and IV contrast. So I drink 32oz of oral contrast (tastes like lemonade) 1 hour before the test. Then during the test, they inject the IV contrast. I can visit the bathroom before getting on the scanner table, and I do, but before the test is complete I need to go again. Mad rush to the bathroom after the test is done. Maybe my bladder is small and fills up fast. And when the urge comes, I have to go NOW.
MJHJAN- I want a piece !!!!!
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dang, i want some cake!
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I'm celebrating that I felt well enough to make myself some vegan French toast! My legs are wobbly jelly so I did end up dragging a chair over and finished cooking sitting down but still!
I have left over dipping sauce stuff and bread so I might have seconds when I get my energy back.
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Way to go Moth! I bet it was delicious.
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moth— congrats on the vegan French Toast!! I still find making meals leaves me exhausted. Pat yourself on the back. Woot Woo
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What a day! I was getting ready for my virtual follow up w/MO for results but didn't see a video icon, so after a call and transfer to the clinic, I found out they changed my appt to an in-person visit. So I raced there arriving and hour late and wondering why it changed. Naturally, I'm starting to freak out about bad news but I get there and was told they getting back to in person visits, unfortunately, no one called be beforehand.
So, the results, well, technically it's progression but I'm not overly concerned. The single hip bone met that made me stage IV from the beginning appears a little bigger now after 3 years of stability. Nothing else new in the body, so yay!
My options are watch it until the next scan or enter a radiation trial where I'd be randomized to 3 sessions of rads or watch it. I'm volunteering for the trial, I figured “why not?"
Now, I'm getting my H&P. DH and I are taking the travel trailer to the beach for a few days. I'll post pics 😀🏖
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Mae~ Thank goodness no new places ! What a day you had.... I would have been all stressed out. I’m happy to hear that you are taking a trip soon! Well have our correspondent back in the field. Yay Mae! 💪🌻
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Mae,
That sounds like a win to me! And you are right -- what's to lose by going into the trial? It will either be status quo or else you will get a treatment that you would probably have anyway. Enjoy your getaway!
I also had a CT scan today, but mine was followed by a video visit with my MO. I still haven't seen the CT report or the blood work (or the tumor markers) but basically, the CT report was not well written. She was reading it to me -- it said that some of the bone mets look "slightly less sclerotic" -- even she didn't know what that meant. But then it said no significant change. With the liver, it said that it was stable and unchanged (yay) but that an MRI would better show the same area. Well, yes -- that's why the interventional radiologist has been ordering them since last June!!! Bottom line: I am having the MRI for the IR next Wednesday, as well as a nuclear bone scan (haven't had one for a year) and we'll see if we glean any more info. Consult tomorrow AM with Dr. Massimo Cristofanilli at Northwestern -- I'll see what he thinks of all of this. So no answers, but I'm still here!
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Thanks ladies
Bevjen, looks like you got decent results too, yay
Had DH get me a slice of pocket duty cake, lol
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I am with dodgers on the making a meal issue. Just not happening. I just don’t feel well to stand there for any length of time. Don’t have the taste for anything anyway. My DH does all the cooking. He’s honestly amazing.
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Mae- Woohoo for your results. Trial?? Potential side effects?- diarrhea? I have not had rad treatment, just read on here that can sometimes cause some GI issues. Have fun on your trip!!!
BevJen- Well...it sounds good-- liver stable. Hopefully MRI next week will show all good with liver. "Less sclerotic" ???? Frustrating when we have more questions from the scans.
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Moth, I also feel with everything reopening it will be more dangerous.
I haven't worked since March 23rd. I could go back June 1st. I am not sure if my MO will be OK with that. If she says I shouldn't I don't know what happens next. I am trying not to get too far ahead of myself and waiting for my appointment and scan results. My appointment is Thursday after my scans. I am fortunate in that my appointments are always the same day after my scans. It's nice to get the results right away.
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