My Husband, My Life, My Love, My Family, My Cancer
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hope everyone remains safe
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Booked my first trip to the hospital for my routine echo. Added pickup for an hour before and after. Since it is a shared ride, rather walk around if I am able to in the hospital. Very thorough, even asked how I prefer to get on bus, ramp or stairs, I chose ramp.
Heavily edited. I decided to stay home today to catch up on money making stuff to ensure that I get the UBER mostly paid for by surveys and games and whatever else. Not much else to do, the paratransit pass does give free rides on off peak hours which is good if I have to ride the regular bus.
I did make another portion of the swansons garlic chicken and pasta. I has carrots, corn and broccoli, stuff I don't normally bother with but it was good. Took a cup, added bit of shredded cheese, added more garlic with a milder garlic spread. Microwaved 4 mins, added tsp of mayo and a little salt, was really good.
In pockets for anyone who needs me and hoping everyone has a great day.
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Ah crap, the hip guy wants me to come in for a consult. Ugggghhhh.
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Hello all my lovely “Ladies of the Living Room” It’s been a while since I’ve been here. I tend to isolate sometimes. No reason, really, just haven’t felt like it and keeping to myself. I started reading everything here and am happy to see you are all reasonably ok and posting. I was so glad to see @dodgersgirl, commenting about rehab. @micmel I love the picture of Theo. I hope he’s being a good boy for you, and if not, he’s so sweet you’ll get over it because you love him so much🐾🥰. Saying hi and sending love to you all. I;m really tired and lazy today and don’t feel like typing. Had my 2 injections yesterday and follow up with my Onc. I have a great story to share with you all, but not now. I’ve been having visit with the Big D all day, and will share my story later. Or tomorrow.😌🩵
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@sondraf Sorry for the news but hopefully there is something easy he can do.
@shanagirl I totally understand about about isolating. Some days I don't want to interact with anyone either. Hope you get beyond the D days and pain of your shots quickly.
I got the results of my PET scan (after only two hours!) It is a little mixed but not bad. I have certainly received worse news. Just mild uptake in a couple of areas but thankfully still no neck or brain involvement. Just spine, liver and esophagus lymph node. The areas I was worried about are fine (gut, stomach, bladder, etc.) The lung has improved. I will wait for the input from my oncologist of course. I am thinking it is because I was off the Verzenio for a couple of months. Hoping I can kick it all back with continued use. Don't know whether it will work that way. Anyways, we are starting to discuss taking a little vacation mid to late September. I am tired of sitting at home and need to get out and live large while I still can.
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I feel the same way Shana. Totally understand!
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(previously LivingIVlife)
Well I am back on my new username as LivingIVlife would not work again.
Times and weather they are changing! The heat, fires, hurricanes, flooding is devastating. We have been lucky out east so far but are getting prepared for a busy hurricane season. Certainly don't want another Fiona!
So tomorrow I am having my head read literally 🙃 I have been getting headaches with some imbalance when I get up and at times double vision. I talked to the MO on Friday and go in tomorrow so that was pretty quick. She said she would call Thursday.
Last week took Belle to the beach and she was so funny. Wanted nothing to do with the water but she was jumping around on the white sand! Got a harness to walk her and it is much easier.
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My dear friend in Ontario sent me this new beach picture that I love! A bunch of regular people at the beach. No bathing beauties in this house!
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Hi everyone. I hope scans are good or at least stable and concerns are few.
It's a week on Zoloft and my head and hand tremors (essential) have increased. They were suppose to decrease. Can't really type well. I have MO appt. tomorrow.
Thinking of everyone and sending healing thoughts.
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great pic of Belle and you on the beach. I love the beach!
that is certainly a wall hanging for my home as well!!
hello Irish!1 -
Brrr, it’s 57 degrees and raining (remnants of TS Harold) but DH brought me coffee in bed, so I wouldn’t have to disturb the pups on my lap hiding under a blanket.
Quick trip into town today, then some insulation and wall paneling in our bedroom tomorrow.
Hello to all 🙂
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Good morning all, in the pockets for appointments and scans this week. Fingers crossed for good outcomes.
bellelove Great pic of you and Belle ,beautiful ladies. Also cool beach pic from your friend, agree love that it's regular people enjoying the beach. I absolutely love the beach it just brings me peace sitting there.
Yikes illmae a bit chilly ,enjoy your hot coffee and the warm pups.
Shanagirl Hi there, we totally get it! We know whether your posting or not your here with us. Hope your feeling a bit better today.
intolight Ok we'll take the mixed results and believe being back on Verzenio is gonna do the job! A vacation in September sounds lovely, I hope Mo agrees.
irish Hoping you have a better day today.
mara Sound like you've learned the ropes quickly with paratransit. So glad you have options now. Your meal seems delish and easy, glad you enjoyed it.
Well The big D seems to have left me for about 5 days now, fingers crossed!! Ro said nope not from SBRT and probably not a parasite from the river water? Who knows I will mention it to MO today before treatment to have it documented. I restarted Xeloda this week and started a new regimen to combat HFS. Really hoping it helps as it would truly improve my QOL.
Hi to all I missed here, still pray for all of us daily❤️
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Living, Belle is a beautiful dog. Bellelove is also an appropriate username as well on here but glad you remind as well. I am sorry you've had the head issues, in your pocket.
Intolight, in your pocket and sorry about those mixed results.
Mel, I imagine Theo is a handful of beautiful dog.
I wanted to go to the mall again for some walking but the weather says no, tons of rain. Added the wall pushups as those would be good if I fell, still doing all the ankle exercises, chair workouts plus walking workouts. Might walk my hallway once I shower. I got a grab bar that attaches to the side of the tub. Works well. I like grabbing it when getting in and out of tub when showering. Made some more washing soda for laundry and did a bit, survey and games are next.
Unsure what breakfast will be, need to have some beans, may make a pizza on a toasted english muffin. Spread garlic and then use taco seasoning to act as the tomato sauce. Put a smaller amount of beans and bran, put those on top with olives and cheese, bake up in the oven. Second meal could be savoury pancakes including eggs in there or just add the butter and make them sweet, undecided on that at this point. Found some refried beans so spread them across english muffin and did add the sliced olives and small amount of shredded cheese on top.
In pockets for those who need me and have a good day everyone.
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Good afternoon Sweet Ladies of the Livingroom💗just checking in to see how everyone is doing. Yesterday when I checked in I said I had a story to share with you all but just didn’t feel like typing. I still feel kind of like that today but here it is……..
I went for my 3 injections up in Hackensack John Theurer Cancer Center. Lot of side effects since yesterday. I do have great news though😊. I met with my Oncologist and when he walked in the room he said to me with a big smile on his face..”Barbara. All your Scans are ‘unremarkable” you are a Miracle!” Everything is stable..YOU ARE A MIRACLE!..break out the champagne!” These were his words to me‼️😂.
Today is a beautiful day but I really don’t feel like a “Miracle” I feel like f***ing shit today from the treatments on Monday🤢😬
Waving 👋 hi to all of you♥️
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Congratulations @shanagirl !!!
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shanagirl - good job for great scans but I hear you on the not feeling much like celebrating if you feel like crap!
I was reading a book earlier today and came across this concept of Radio Taiso, a set of exercises the japanese have done (led via radio program traditionally) for over 100 years. I looked them up on YouTube and followed along with some kids and it was a great little way to move and breathe deeply after I had been sitting for a while at my desk (obv with some modifications for lower back and hip). A nice gentle pick me up:
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congratulations Shana. So great to have good news to share with everyone
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Sondra-I just did the Taiso exercises. What a great pick-me-up! Thanks for sharing.
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shanagirl Fabulous news!!! Hope you feel better soon to celebrate it.
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Shanagirl, what great news!! Feel better and then have some fun celebrating.
Hi all. Gosh illmae that is cold… Not here. It was 101 and I had to go to MO appt.
Today was a bad news day after great news 2 weeks ago. The MO believes I have paraneo plastic syndrome. MS is clear on MRI, so we can't blame MS for the neurological symptoms. Here's a run down on my specific symptoms: severe cranial pressure, hearing loss in one ear, elevated tinnitus in other ear, severe head tremors, severe hand tremors and nystagmus. I also have very bad burning in the base of my spine.
This has been going on since June and I was hospitalized in July thinking MS. He's ordering a spinal tap. I saw the neuro last week and he believed that I am suffering from severe depression. He's not a neuro-onco, so I can understand why he wouldn't consider this as a differential diagnosis. It's rather rare disorder. I'm not gonna lie, this is a very upsetting and mentally challenging period.
I hope everyone is having a good peaceful evening and a better tomorrow.
Saying hi to Belle and Theo and all good doggies and kitties.
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passed out from playing ! Theo send his kisses to everyone. I’m sorry Irish , I am sending good thoughts and hugs.
hello Mara, Mae ,cookie, belle, AJ, Chicagoan, Shana, Sondra , intolight !!2 -
I don't post often, but follow along. My CT Aug 8 showed progression in the liver, but bone scan today showed NO new lesions. I start the new drug Elacestrant (OSERDU) tomorrow. It's an oral SERD (selective estrogen receptor down regulator) that got FDA approval Jan 2023. Nervous of course. The ORSERDU thread on BCO is not very active, but I've started to post anyway to document my experiences. I've joined a private Facebook ORSERDU group of about 300 women which is very active. As is common with these cancer drugs, they report a range of side effects and responses to treatment. I hope to get at least the median PFS of 3.8 months and hopefully the liver lesions shrink.
Irishlove, You'll be in my throughts and prayers.
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Micmel-It looks like Theo is smiling in his sleep! What a sweet dog.
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Weninwi, good to hear your bone scan was clear, and I'm hoping this new med Orserdu works for you. I'm quite curious about this med, so I'll be very interested in how it's feeling for you.
Shanagirl, wonderful news about your scans! Now, if you could just feel better, right?
Mara, Uber can get expensive, but glad you're getting rides. Hope your gorgeous cats are doing well, too.
Sondraf, other than the bending over to touch toes (I'm not supposed to do that following a fracture), that was a fun video! Thanks for sharing it.
Intolight, mixed results from your scans, are you going back on Verzenio? Hoping that will knock back things quickly for you, and yes to vacation!
Bellelove, great photo of you and the painting is perfect. Wouldn't it be lovely if we could all hang out at the beach and laugh and eat and feel the sun in our faces and the sand between our toes?
Irish, sending you so much love and support, you've been dealing with these symptoms for too long. Praying that you can get answers and relief.
Emac, thinking of you and hoping the weekly taxol might get easier for you, and that it works. Will you stay on it for your radiation?
Waving hello to everyone else, including that cute teddy bear Theo. First kind of warm day here in San Francisco, got my hair cut even shorter and am loving how easy it is to manage. Flowers blooming in the yard, which makes me happy. Made some brownies and they did not come out right, chuckled and went to the bakery instead (where I should've gone in the first place).
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Congrats shanagirl.
Sorry to hear the bad news of your new diagnosis, irishlove.
Theo is precious.
Weninwi- Hope Orserdu is a good treatment for you and you get wwaayy over 3 months on it.
Saying HI to all.
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Shana - love the good news!
Irish - boo to your bad news☹️. Hopefully you will get more answers and even treatment options. Wish I had a magic wand to make things disappear.
Mara - your new travel option sounds perfect. You continue to amaze me with your food skills!
Weninwi - fingers crossed that your new rx does the job. Please keep us updated.
Sending positive thoughts to everyone and some snuggles to sweet Theo😘.1 -
@weninwi This new drug sounds very promising. I hope it does the job and with no SE.
Hi all. I thought for sure that photo of Theo was gonna show a torn slipper. lol. OMGoodness, he is too adorable.
In pockets for everyone that may need the support. Thank you for the support you've shown me from day one.
I did some reading on paraneoplastic syndrome. One of the PubMed papers listed check inhibitor drugs treatment could potentially lead to this autoimmune disorder. Of course I'm not diagnosed, waiting. There are no neuro-oncologists in my area. I see Mayo has cut accepting most Medicare Advantage plans. I emailed them to ask specifically about Humana MA HMO, but haven't heard back. That's just in case I need more help then I can obtain at Florida Cancer Specialists in Palm Coast.
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Oh, the paradox of being a MIRACLE and feeling like f***ing shit. It’s hard to celebrate. And if one more person tells you, “You look GREAT!” there is going to be some blood shed and it won’t be yours, right? I hope today starts to be better.
Such weird weather still. We’re fine here, but it seem like lots of places are just getting pummeled.
Irish, seriously? I mean to quote Vinny, “Is there any more shit we can pile onto the outcome of this case?” That’s becoming my new favorite line. I don’t know if it helps to have an actual label for what you’ve been experiencing. This really sucks and I’m so sorry.
Theo, you are too cute for words. Thanks for coming into the living room to spread a little cheer.
Weninwi, it’s nice to see you here. I’m sorry for your latest progression. I’m glad you found a good FB group for support.
Waving hi to everyone. I see you, even if I don’t mention you by name. I’m waiting for my housekeeper to arrive and then I’m off to get a pedicure. It’s long overdue.
Love to all,
Carol
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Irishlove, I am sorry for what you are dealing with. In your pocket while everything is figured out.
Shanagirl, great news on your scan, hoping SE ease up on you.
Mel, Theo certainly is smiling.
I have my echo at 1100 am tomorrow but booked my paratransit for a 10 am pickup and 1pm pickup to home from hospital. I figure if I am super early, take a walk around the hospital, if done early, same thing. Will bring snacks to have and water.
Strange breakfast. Took the skillet meal, combined with refried beans, 1/4 cup a nd wheat bran, added some taco seasoning and steak seasoning. Ground up, came out as a slightly creamier hamburger. Added to microwave and used a little mayo to bind, was good but got full so will have it with something else, possibly with eggs or combine with pancake mix and fry up. We will see.
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Shanagirl, outsiders don't understand being stable and feeling crappy to keep it that way. After seven years of treatment they also don't understand treatment fatigue. Some days I just want to hide away from everyone but my family still sees me looking OK and think I can do everything. Sometimes I have to tell them I just can't cook dinner tonight and they pitch in fine. I would love for them to just tell me to sit back and they will take care of me but I have always been the caregiver in the family. Some things are hard to change. I scare my DH whem I go to bed in the middle of the day so I try not to do it.
weninwi, I will watch your reaction to the new drug too as I may be slowly progressing again.
irishlove, thinking of you and praying for some peace and relief.
We walk together in this…thank you to everyone for thinking of others.
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