My Husband, My Life, My Love, My Family, My Cancer
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Hi Snowdrop, and welcome. I absolutely love cherries!
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Good day all of you courageous Stage IV fighters. I click onto this thread and see all of your names in Mel’s Livingroom and I felt a good feeling to “see” you all again.💕. I have to say that since joining in Jan/23 when I was diagnosed with bone mets (😱) Shock!!! I have gotten to. Comfortably “know” you and each one’s struggles along with some of those who fought to the. Bitter end. I really love you all and include you in my prayers at night, and daily talkies with God under my breathe during the days. (Breath Prayers). You are all wonderful, and. Now a newly here too, @snow-drop , welcome girl😊.
I’ve been off line a few days here. I read along today, but lately, I’ve been in a brain fog, and find I can’t absorb and retain each of your comments. UGH 😣 I think I’ve been in a little low state (not quite depression). I feel just flat and fogged..just going through the motions of surviving to be present for my loved ones. I got over that “summer virus” but still have an uncomfortable cough that just feels like a sharp pain when I take a deep breath. Not sure if it’s a part of my Asthma or just another SE. Anyway, my words of. Wisdom for today are……..TURN OFF THE NEWS, it’s too depressingly annoying.😂
@goldensrbest @irishlove @illimae @intolight @micmel @mkestrel @mara51506 @tanya_djamila @threetree @seeq @sf-cakes @candy-678 @cookie54 @cure-ious @sunshine99 and all here I am thinking of you all and wishing you a good day of staying cool and comfy, peace and rest, a day without painful side effects from your meds♥️🩵
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@cookie54 ill be laughing all day picturing you swimming in the cesspool seine river as fast as a dolphin 🐬 lol.
I did go to France in 2022 I left a few days early it’s a tourist destination. It was ok but I wouldn’t return. I much prefer staying near the beach but I know some folks love urban life.
Welcome snowdrop!!!
Have a good day all
Tanya
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Welcome Snowdrop to the living room, nice of you to bring a treat.
Goldens, hoping today finding you feeling less in a funk than you were.
Mel, never did try a pina colada. I don't drink now but I remember my first drink. Used to work at a Mexican restaurant, same time period as older DB, we had a Christmast party, about 16 and it was a fuzzy navel.
So have decided that before buying totally new washer because I am itching to do that, going to give my washer a chance, magically, its' spinner started working and am also putting stuff in the bigger panda spinner. I put that back in place, old non working washer will be tossed with garbage. I still plan to use the smallest little washer for things like socks etc, use it in the kitchen typically, I don't expect long life but who knows. I have a laundry going now
I had the meeting with the PT person wanting to see what if any services I may need but we mutually decided after demonstrating the different exercises I do every day or two, she is satisfied, likes the adjustment of using two canes during marching exercises, excellent balance etc. The grocery shopping service is more expensive than Walmart, I will stick with that for delivery. All in all, she considers me to be in good health.
Rice preparation day today, using some of the mexican rice, may boost it with white mixed in with taco and garlic seasoning. Looking for a couple of meals, can take rice, add couple eggs and lentils for a meal at break fast. I can take lentils and rice mix and put in a tortilla wrap since I get a few tortillas in the soft tacobake meals. Using up up food. I also have kraft cheese powder that I coopted and will make my own cheese sauce with taco seasoning as well. I am itching to put through another shopping order but will slow my roll until I use up my milk
It's been a few weeks since I have seen DB and SIL, they don't want to do anything tonight. Starting to be sad about this but have to push it back since getting upset won't change it and they don't owe me any of their free time. Will use this as an advantage to myself, get more laundry done and to bed earlier, have my echo tomorrow. Eat well, and all will be well. No worrying about visits.
I do hope that everyone else is having a good day and will be in all the pockets here who need me.
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Shana, I've had plenty of those days too and can empathize. The brain fog is no joke after years of drugs, brain rads and surgery. I am In your pocket to feel less foggy and less almost depressed. I hope you can find something you enjoy, maybe a good tv show or movie can help. Youtube has lots of channels that almost read books. I got to experience a ton of Anne Rice with a channel the naughty librarian.
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@snow-drop Hey there welcome in and thanks for the cherries! We love meeting new friends o post if you feel like or listen to us gab lol.
Shanagirl Thinking of you and hoping the funk is short lived. I hate brain fog, I'm annoyed at myself because I use to be so sharp and quick! Went to breakfast with my gf yesterday and several times could not remember names of places/things..ugh! Breakfast was delicious though went to First Watch Diner, thinking you probably have them up by you also? Hugs.
Mara Sorry you haven't seen db and sil lately I know you enjoy to get out a little with them. Hoping you all will get together next week, hugs. Even if they just stop by for a visit and a cup of coffee. How far do they live from you?
@tanya Glad I could give you a chuckle oh yea dolphin mode for me!
Exciting news in my life for a change lol. We are meeting my daughter's boyfriend of three years for dinner tonight. They live together and have been talking for the past year about marriage. So I believe he is going to pop the question soon and wants our blessing. He is a great young man and treats her well and that's all we need. Stay tuned…
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Mmm, I love cherries! Thank you snow-drop!
Shanagirl, I can so relate to feeling low, not quite depressed... love what you wrote about this living room!
Goldens, also relate to the funk (phone tried to autocorrect 'funk' to 'fun', lol). Really hoping this can be your last knee replacement, maybe?
Felt pleased with myself for making a change with the painting project - the color I chose for the living/dining room looked too dark when they painted the whole room. I had several moments of thinking, "just live with it, it'll probably grow on you", but I knew I didn't really like it. Asked the foreman if it could be changed, and he said, "of course! Do you know what color you want?" He went and got the new color, and it's now looking fabulous. Phew.
I feel like I already have too much that I have to Just Live With (hello MBC!) so it's good to change the little things while it's still possible. The two young dudes who helped move all my furniture and 28 boxes of books to the garage are available on Monday to bring it all back. Hurrah!
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Snowdrop, welcome to this thread. You are among instant friends here. We stopped at the Farmer's Market on the way home from my MO appointment today and I just had to buy some cherries. They are yummy! They also have the best Rocky Ford cantaloupe and watermelon, A Colorado specialty.
@cookie54 Such a happy time to meet your daughter's boyfriend. I am sure it will go well.
My MO has decided to reduce the dosage of my chemo meds, Verzenio. She says the older you get the slower your body metabolizes medicine etc., so the stronger the side effects. It is well known that this medicine (as well as some others) still work fine at the lower dosage. It is a good one for me. I have been on it for two years and am stable, and she made the side remark I will be on it for a long time. Apparently they start you on as high a dose as you can tolerate. I started at 150 mg which only lasted for three months, am currently on 100mg, and will move to 50mg. That's fine with me. I can't continue like this…
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Thank you so much ladies for the warm welcome :) It's amazing to see how much you all care for and support each other. I am so glad you liked the cherries!!!! It's lovely to be among instant friends, and I can already feel the positive energy in this group.
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Intolight, it's good to hear that your MO will reduce the dose of verzenio. I've been on the lowest dose of Ibrance all this time, except for the first cycle at the highest dose - which landed me in the hospital with neutropenic fever! My MO basically said, 'well, your body certainly responded to it', and we went right to the low dose. Minimizing side effects is so important for quality of life, and if you're feeling like you can't go on the way it is now, definitely time to reduce dose. Sending you hugs.
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@intolight Hoping you will get the relief you deserve with reduced dose. The Xeloda I'm on is similar they start high dose and adjust as you go. I was joking with my friend last week explaining how it works and I said "I'm willing to suffer for stable". I feel like it should be a T-shirt. Which I feel like we all suffer for stable here!!!
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Tried to do laundry but the stool holding the panda broke. Took legs off the stool, will insert weights in stool storage. tape lid down. Put foam on bottom of legless stool and top, tape those down and use a large towel to stabilize panda spin dryer. I also purchased a new portable washer, same model as the one I have had more than 3 years. Need to have a practical wash option, cannot drag my stuff to laundromat
Eggs this morning with a lot of cheese, seasoned with fibre one cereal done up in spice grinder, garlic and salt, have not made up rice yet. No lentils opened yet. Microwaving to save time. Might have two to three eggs, I will see very shortly. Repairs of the stool will commence after and I think that would be fine to since bedding wash is coming up, just feeding left to right in short cycles. Or keep the old washer to take care of some of it, not sure yet. Keeping everything in the closet for now since there is plenty of room.
I hope all have a good day and in all pockets where needed.
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in your pocket Mara
Hope the reduction in meds makes you feel better intolight. I’ve been on 75mg for a long time now. Was on 125 mg for years ! I look back and think how did I manage that?
Have a good day ladies. Happy Friday!
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Intolight, in pocket as well for the dose reduction to allowIng for less SE to deal with.
Got really lightheaded to the point of having to go to bed and lay down for a few minutes. Used a two canes to maintain balance. Unsure why but will add more beans and lentils, boost up the iron. I cancelled my echo which was already rescheduled and did of course cancel the paratransit. No fever so no illness causing but better safe than sorry.
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mara, you're like MacGyver when it comes to repairs and even with your food combos. I'm sorry you got lightheaded. That's always a little scary. I'm glad you were home and could rest on your own bed.
snow-drop, welcome!
intolight, I'm glad you're getting the dose reduction. My MO started my on the 7.5 of Afinitor rather than the 10. I've been on it just over a month and she offered to up the dose to 10. I'd rather stick with the 7.5 and she's OK with that.
Waving "hi" to all who are hanging out here this morning.
Carol
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Ina Jaffe, great NPR correspondent, who wrote the following article about her own experience with MBC, passed away 💔
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Hi all. I have been reading along, just not commenting much. Sorry.
I had my scans this morning. I was to see my MO this afternoon, but my vehicle is broken down and I had to get a ride with my brother-in-law to my scans. Instead of having a long day (scans at 8:30am and MO at 2:30pm) and having to put my brother-in-law out for multiple hours, I called my MO's nurse earlier in the week and changed the MO office visit to a phone call visit. If I would have gone by myself as I usually do, I would have eaten lunch somewhere and brought a book along for the time between my scans and the office visit. But I thought that was a lot to ask of someone else when they agreed to take me.
Anyway…. the MO called that my scans show good again. Next scans are in 4 months. To continue Lynparza, Lupron, Xgeva. The MO asked if I was having any new symptoms/pain/headaches. I said no, just the usual GI issues and fatigue. He has not mentioned headaches before….. hum. I don't have scanning of my head done. I have a CT of chest and MRI of abdomen. I am probably reading too much into his question, but you know how we can do that. And MBC can go to the brain. Just waiting for the other shoe to drop, you all know about that.
Thankful that all is going as well as it is, for now.
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Welcome snow-drop! If one has to have this stinkin’ disease, it sure helps to have all these sisters along for the ride. There is so much comfort and caring in Mel’s living room. We sure understand the good news and the not so good news. We’re always here for each other.
Intolight - I hope the dosage reduction will help your side effects. It certainly helped for me, although I’m on Ibrance. Interesting that as you get older the side effects worsen. Sometimes I think it’s in my head but it’s reassuring to know there’s a real reason for feeling the way I do.Our 6 hour drive to our friends in Michigan took an extra 2 hours due to an accident that had thinks at a standstill. Thankfully we made safe and sound. Fingers crossed the trip home will take the usual time.
Sending wishes for a good weekend for all - with lots of rest and pain free days.
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@candy-678 My MO said my slight headaches were probably from Lack of hydration and low creatinine levels so don't go to brain mets, yet. She was reassuring.
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@candy-678 Congrats on the good scans.
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candy Glad to hear the good news, yipee for stable! Hope your car is an easy fix🤞🏻
Goldens Glad you arrived safely and fingers crossed drive home is easier. Have fun!
Mara Hope you feeling better.
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Good morning all. @snow-drop , welcome to Mel's and thanks for cherries. I have a deep appreciation for chocolate covered cherries, especially in my stocking for Christmas. lol @mara51506 I believe loneliness is a huge issue amongst chronic condition sufferers. I don't have good answers, but maybe some others will give ideas how to meet and make new friends. I miss our old church and yet haven't made an attempt to attend a new one. Gotta get out of this house once in awhile. Oh I've got one, a book club?? @candy-678 Congrats on stable scans gal. Funny thing my MO mentioned he wants a brain MRI done next time. Maybe I'm talking gibberish to him and he's concerned. Hopefully it's chemo fog and the fact that I just don't try as hard to be correct. Giving one's self a break makes it easier to get thru the day. lol Hi to all the sweet gals here. In your pockets for stable scans and pain free days.
Using a walker, MO thinks my numbness, pain and slight paralasis is MS related, not cancer. Pallative nurse upped my pain meds, which I accepted reluctantly. I'll see neuro next week for his impression/interpretation of the MRI of the spine. 23 years of MS and I guess all the hard work to keep my legs going paid off, until now. We will see. DH still has major symptoms of covid. I threatened him if he doesn't go get a chest xray at urgent care, no —————-fill in the blank. All the rest of us cleared covid in 1 to 2 weeks. He's going on 3rd week. Watching TS DEBBY which is probably going to impact us here on east cost of FL. Time to stock up on milk and bread. Have a good weekend…..
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Irish - Love your "talking gibberish" comment, and I can relate. Sometimes I find myself doing that too; when talking both to others and now myself sometimes. I too have chalked it up to the drugs, brain fog, and fatigue. I don't try as hard throughout the day either, and am finding I really don't care (actually I think I do). I'll leave things "mostly" cleaned up, but not totally, and I'll do things like making typos in emails and I don't have the presence of mind or energy to correct them, and I just tell myself, "it's not that bad and anyone whoever reads this will know what I meant" kinds of things, and then it comes with this odd feeling of, "I really don't care ". Very strange.
Really hope your husband recovers soon and that the coming storm doesn't give you any troubles! Absolute best of luck with that MRI too.
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Good Morning All!
Well it’s going to be another brutally hot day here at the Jersey Shore. I’ll be staying in of course. Even sitting outside on the. Front porch is too uncomfortable.
@candy-678 I was happy to hear your scans were good 😊
@sf-cakes thank you for Sharing the article written by Ina Jaffa of NPR about her experience with MBC. I, myself, did not keep my Stage IV cancer a secret. I feel people should be more aware of how insidious breast cancer is and it’s not so pretty and pink the way the media & corporations portray it.
Wishing everyone a cool, calm, not too boring day today. I’m here for pocket duty for all.🩵💕
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Dang, last post disappeared. I will make this as brief as possible.
I am feeling better, had a bunch of lentils with my breakfast meal. It was just a Great Value frozen pasta, added 1/2 cup of lentils, garlic seasoning, all purpose seasoning and sour cream and onion. Added a dollop sour cream. When I use a frozen meal to cook this way, I just pull open the lid and add the stuff right on top of the frozen meal. You can do pretty much anything on top, usually heat for 4 mins and 30 seconds. I am planning to cook up some spanish rice and white rice separately, combine them in the fridge so I have an easy way to bump up meals. Another idea I came up with is instead of making kraft dinner, take the packages of cheese and set those aside to use as cheese seasoning on other meals, I think using these noodles to stretch and having all the cheese is a win win. Later am planning to make a tortilla, put in fry pan, spread some garlic and add rice and lentils, not too much since I also plan to add a precooked egg after it comes out of oven. Just going to crumble some of the old el paso hard shells, the cheesy ones. Should taste good.
I did wind up purchasing a new portable washer and spin dryer, same kind I already have. Already mapped out where to put it. The old washer still washes, the spinner was what died and was simply going to toss the old one but might as well keep it for the day to day alongside the new one. I should be able to keep them raised on the single step bench in there but going to put some foam padding underneath so they don't move around a bunch. Panda spin dryer goes to my bedroom closet and the only one to get rid of is the totally dead one, we will see. Adjusting budget to pay off the new one sooner, cut some streaming stuff etc.
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My posts keep disappearing so just want to say, Candy, happy your are stable. You are dancing with ABEL, stable needs its' own dancing partner.
Irish, hope DH recovers soon and goes for xray, hoping you and can get some meds and advice on your spine, mobility etc. In you pocket. Though I may wish to see DB, I generally don't feel lonely, never been a real social butterfly. Most friends are either virtual like here or on my Facebook groups or people I have worked with at Home Depot or the call centre downtown. I do not mind. I am unworried about DB and SIL, I know they will call.
Cookie, I do feel better, adding more lentils and beans, just keep forgetting to use them. A lot of food choices here.
Goldens in your pocket for the trip home to be shorter. Enjoy the visit.
Hope everyone has a good weekend and in pockets for all.
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yay on stable Candy!!!
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Hi all, hope you are having a good weekend. I'm going nuts with mouth side effects of everolimus. I've had blisters, the skin off my bottom lip for a month and it bleeds easily just trying to bite bread or anything because I'm on Eliquis. Hurts and stings. I use the dexamethasone rinse. I keep putting on Vaseline etc. I eat little bites trying not to touch my lips. It won't heal. Now I'm having increasing tingling inside my mouth and bad metal taste. I hope I'm not getting sores inside my mouth too. I have dr appointment Monday so will see what they say. I want to see next scan whether it's helping or not but I'm reaching the limit of my torture tolerance. Anybody else dealing with this? I'll go get some sugarless candy or something maybe. I can't chew gum, hurts my jaw.
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