My Husband, My Life, My Love, My Family, My Cancer
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Irish, that poem is sad but also lovely at the same time, describes how a lot of us feel. Sending hugs your way.
Not much going on here, two loads of laundry, got the wee washer cleaning up in the kitchen. Solved a problem where it was collapsing by hooking the drain hose to the dishrack above, holds it up more which is good. Doing some cloths right now. Other one got towel and other stuff in there. I am finding that the tiniest amount of Tide with oxy clean in it gets stuff very clean and it will take forever to get it used up which is good.
Not planning to go anywhere today. Going to do some major budget boosting which is great for me, playing two mobile games I get paid a little bit for and can put into paypal and add to my budget or the next time I go shopping.
I still have some of the mexican rice dish I made yesterday, planning to use some of it but add a precooked chopped egg, beans, lentils and tomatoes, put the tomato in with it for breakfast, small amounts of each. Later, planning to do a tortilla with cheese powder, garlic powder and pizza sauce, put some lentils and beefless ground with shredded cheese over top.
Hoping everyone has a good day and in pockets for all that need me.
Catherine
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Irish Truly spoken from your heart, beautifully written ❣️
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Laurel, lovely poem from the heart and so true. Thank you for sharing.
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Irish - what a heartfelt poem…..❤️
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Dear Irish: "He only can create the greatest imaginable beauty who has endured all imaginable pangs"—Yeats
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I’m stopping by in Mel’s Living room be with you all this evening. I see a lot of you sharing some of your struggles my heart is with .you and I’m in your pockets.
@irishlove. I read your poem and it touched my heart. In so many ways. Thank you for sharing it with us. Had a few days of feeling like that in the poem.
@threetree, it seems like you and I are usually matching with our pain and wondering what’s causing it. I’ve been the same, last couple of weeks. Didn’t know if it was a summer cold, or my allergies and asthma, and all the bone pain, extra exhaustion and sleepiness all day, that passed but still am not feeling up to going out with the heat…my older daughter who works at a spa, and teaches color and hair styling to new hires coming out of school. So I went by her the other day to get my hair done, and felt better, but couldn’t wait to get home the afternoon in that chair was long & tiring on my neck & spine. It's this cancer thing that causes this. I’m convinced it’s the MBC and the. Side effects of all the treatment. Period. I hate wondering what’s causing all the discomfort. I. Know it all started with this metastatic cancer beast in me. The idea it could Covid? We don’t need a new thing to worry about. Not buying it. Just another media scare, and I refuse to embrace it. My whole life it was a cold or allergies, or flu or the 24 hour bug. Covid ???? Nope 👎 wear a mask or you’ll die, nope👎, monkey pox, nope 👎. Just taking one day at a time. The last two days I picked up a paint brush after weeks of avoiding something I love. Just a few touch ups on nearly finished Painting. It helped to lift my low mood.. then I cooked dinner. Now that is always exhausting. I don’t do it. Every day. I wish I had the energy that our sweet @mara51506 has🥰Maybe I should us her idea of the Elvis Lip curl😊
@tougholdcrow I’m just loving that handsome kayak companion riding in the front. He looks like a Really nice guy. I love dogs so much. Could never be without a dog in my life 🐕🐕🦺 ♥️
@sondraf Good wishes your way so you can continue to get relief from your pain from the lymphedema. So sorry you are going through that and hopefully the Lymph Specialist will work some magic. And in your pocket this week. Hopefully the Big D will subside. 🩵
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Good evening to all. I hope everyone is as pain-free as possible and enjoying the last days of summer. It's been quiet here, minor storms, limited rain. Guess that's about to change with the tropics warming up. I was looking outside at mama cardinal and her fledgling, enjoying the bird feeder. When the storms come, I worry about people and all of God's creatures.
Mara, I have wanted to ask about groundless beef and lentils. What exactly is the groundless product and what do lentils taste like? Forgive my ignorance. Your receipes always sound so good and affordable.
Thank you for the appreciation of my simple poem. They use to be a bit more involved, but my brain fog has limited my word soup. lol
In pockets for all your needs.
Laurel
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Candy was that you that tracked everyone here on paper. I'm thinking like a spreadsheet or something would be handy. So many tests going on. Hate to read of progression. Thinking we really ought to fill out that page with our background. I don't like it cause things aren't always presented in a standard easy way to follow.i had trouble when I tried filling it out. Keeping track of all the goings on is getting harder for me. Maybe at the computer it would be easier to follow instead of phone.
Anyway most results are in from my Biopsy last Thursday. Not so good.
In 2017 it was mets to bone. Grade 1 Er+pr+ her2-. This is a. New primary. Grade 2 triple negative. What I guessed. There's been no estrogen here for years. Haven't seen MO yet or surgeon. That's in another week.
Glad it's 2024 and there are treatment options.
Gail
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@gailmary Hey sorry to hear you have a new primary, it just stinks! I am here to say being mtnbc that since i was diagnosed in 2016 tnbc there have been many advances in treatments. I wish you weren’t dealing with this at all but glad there is more to offer tnbc these days. Hugs
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gallmary- Yes, that was me that kept track of everyone. I would keep a sticky note next to my desktop computer. Sadly, I do not do that anymore. Sorry friends. I do read each day, and comment periodically, but I got out of the habit of keeping notes. And when you stop doing it, it is hard to restart. So much going on here. So much to keep track of.
I am just keeping on. Last scans still stable. Still on same treatment (3 years now). Next scans mid November. I am attending church more this summer. Don't know how it will be in the Winter months with colds/flus/etc. I am getting a different vehicle. My is 20 years old and having issues. That has taken up much of my time lately.
Thinking of all of you and love to read about what is going on.
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Candy, what kind of vehicles are you considering? I know you have driven a truck for years. Are you looking to get a new truck or downsizing to something smaller? Good luck with your search.
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Shanagirl - Yes, I've noticed that you and I seem to be going through some very similar things, and we are indeed, for the most part on the same drugs. I think they have a lot to do with it. I'd been feeling really lousy for over a week now, and yesterday morning it seemed to be even worse. I just hit the wall and then decided to skip my morning Verzenio dose. I absolutely hate doing that and wouldn't recommend it to anyone, but sure enough, by afternoon I had some new and wonderful energy, all my stomach problems were subsiding, and I really started to feel human again. It was a guilty pleasure indeed! I took the evening dose though, and will take my morning dose soon - back on track for another few months I guess, until I decide I just can't stand it anymore and I cheat again (myself mostly). It does allow me to know that somewhere in there, I am still here, still myself, and still human. Ugh! You know Intolight is on pretty much the same drugs too, and I also really relate to her struggles. She seems to experience a lot of what you and I do, and again, that makes me pretty sure that the drugs are the main culprit here.
So glad to hear that you've been able to do some painting again. It definitely seems to be your passion, and it's wonderful that you can continue with it through all of this in one way or another!
Gailmary - I am just so very sorry to hear about the new primary! I liked to think that when we are on all of these drugs, at least a new one won't be able to get started and that all we have to keep dealing with is the "old one". Hugs! I do know that you have done well for years on fulvestrant alone, so with everything else that is out there, I'm sure they will have many options for you with this new development, and so while this is unfortunate and you have new stuff to deal with, there is a lot of hope there too.🤞
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Chicagoan- I have had a truck for the last 20 years (the same one). I always loved a truck- sits higher in traffic, can haul something without having to borrow someone's truck, I liked it. But, since I have the arthritic issues now, I cannot get up into the truck bed anymore, and I have trouble cleaning off the windshield with it being so high. So I am downsizing, a lot… to a subcompact car. More my size (I am short and thin), and better gas mileage. My truck is my past me. Time to change to something more 'me' now.
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@gailmary So sorry to read about a new primary. That shouldn't be happening! I will keep you in my prayers for a treatment that works quickly.
@threetree I also have occasionally intentionally skipped a dose here and there. I know the med remains in your system for awhile so I don't feel like itis crucial if I miss one. I may be kidding myself but it does provide a little needed respite. I think the lower dose (50mg) is finally beginning to help (after two weeks) but I am careful not to skip any. I think part of it is mental because I still struggle to empty the dishwasher, etc. Nothing has changed enough that I can celebrate. Anyways, I find myself wanting to do more even if I don't have the energy. That is progress!
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Irish, lentils do not have a strong taste, they take on the taste of whatever it is put in. Nice thing with them is there is no real work to add them to something. I even add to eggs or rice at times or on a pizza, whatever you wish. I also prefer canned lentils as I do not have the patience for dried.
Shanagirl, I don't honestly have a good reserve of energy, just take breaks every few minutes, even when I dress or put my makeup on. As long as I get stuff done, don't care how long it takes.
Had my RO appointment, virtually identical to the call in appointment is MO last week, stable for the blood pool in head, no change in brain.
I am going to have meat pies for dinner tonight, simpler meal since am going out with DB.
My first post did not go through so hope everyone has a good evening and in pockets sending sleepy thoughts when you go to bed.
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I've had my liver biopsy done. this time it was harder and I am still not 100%. the radiologist had to put the needle deeper. I asked him to take as much as he could because I don't want to repeat this procedure again. I feel burning sensation in the deep tissue and soreness, and dizzy head. I called the clinic to see when the results would be ready, guess what? the pathologist simply forgot to send the tissues to the lab…don't they understand what stage 4 means? I don't remember ever being careless like these people in my entire life. Despite all these difficulties, I hope the results will be good and that I’ll have some promising options. I really want to reach remission, is that too much to ask?
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This years baby deer are being brought in by their momma’s, so cute!
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Gailmary, I am so sorry to hear about the new tnbc in your biopsy. I agree that treatments are better than they were even just a few years ago but it is a punch in a gut to hear about for sure, I am in your pocket supporting you at this time.
Snow drop, it is not too much to ask, I am sorry you are dealing with this as well. In your pocket as well sending support and healing thoughts.
Mae, those babies are precious, thank you for showing us.
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Mae Awww love this pic, simply adorable!
@snow-drop UGH that's simply unacceptable! I'm sorry for the delay as we all know the anxiety it creates. Fingers crossed for good results.
Mara Hope you had a good outing with DB.
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Intolight - Yes, we might only be doing ourselves a big disservice by skipping a dose here and there, but I almost "have to". I seem to get something like an almost total body and mind "re-set" when I do. Even if it's just for a few hours, it is so good to feel like somewhat normal again. It's almost like a "reverse drug addiction" or something. I just crave feeling normal again and even it it's for just a few hours once a month or something, I treasure it!
Please keep us informed about how the 50 mg. is going. I've also lowered to 100, but it is my understanding that 50 is still a questionable dose in terms of effectiveness. On the other hand, I can't believe your doctor OK'd it if it hasn't been shown to be worthwhile. Gosh, even feeling like you want to do more, even when you still can't is progress with these drugs! Good for you. Hopefully with time, the new lower dose will give you more energy, physically and mentally! You have my heartfelt sympathy and I get it.
Snowdrop - I am so sorry for what you've just been through. I hope that you are feeling better this morning. Cannot believe that they "forgot" to send the sample to the lab! That is outrageous. I'm assuming that the sample they took is still viable and that it will just delay the results, and not require a "re-do"! Feel better soon, and know that we are all here for you. Hugs.
Mae - I just love that photo! Thanks so much for posting it.
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Cookie, I did have a good outing, we did not go tons of places, just Walmart. I did get my cheez whiz, big jar but that is fine, lots of chocolate, a granny smith apple, no idea what possessed me, I normally do not eat them, thinking I will hide it by chopping up with beans and lentils and an egg with croutons. I still like the ground beef texture the best. I will simply chop up the items. Apples are pricey anyway. I will see if I actually enjoy it or not, never been an apple person, carrots were fine as well. I am also changing how I eat the mini pot pies, they are 6.48 for 6 and I can easily eat up 3 at a time if in a rush which is not cost. effective. From now on they will be 1 at a time and combined with other things. This morning, I have one more breakfast bowl to eat, I may split it up today with beefless ground and other things. Another thing I am looking to try is taking some cheez it crackers, putting on a tortilla with few lentils and shred cheese. Probably put a spread of cheez whiz and pizza sauce on bottom, then add the lentils, cheezits go next and seal down with the shred cheese. I think it would be good.
Laundry on the go, I love tide and I use such a little amount that it will last a long time. I have to bring over other box of litter which is heavy, thankfully have a hard floor so it can slide most of the way. Looking to finally open the paper shredder as well, got a lot of flyers and old credit and debit cards to shred, resisting urge to shred cardboard which killed old one. I use the old one as a garbage but it wasn't meant for that.
I hope everyone has a good day and in pockets for everyone who needs me.
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So I did try out cheez whiz for the first time ever, mom did not like it so we did not get it as kids. What I did was took two dinners, michelinas Rice, chicken and peas with carrot combined with a poutine breakfast bowl, cheese, eggs potatoes as well. Cooked each separately, put in a big bowl. Spooned a couple of spoonfuls out onto a plate, added two small spoonfuls of cheez whiz, it was really thick then added a generous amount of taco seasoning and salt. Mixed the ingredients together and it was delicious. I can get another 2 meals together with an addition of beans or an egg or just have it on the side of a meat pie. I figure it will be good for another 3 days in the fridge. Yummy and cheap.
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@snow-drop ugh that is awful - I know people make mistakes and I try to give grace but honestly, when I look back at the shambles of my care for the last 9 months I wonder if I was a bit too lenient and didnt do the squeaky wheel at certain times when it was warranted. Its our lives, after all, at some point we have a right to get angry and demand to you know, be treated in a timely, accurate manner. Im so sorry you are going through this and how frustrating, I hope they got what they needed and everything will iron out in the end.
@gailmary somehow I didnt think that was possible to develop a new primary whilst on treatment but why not, this disease throws up all sorts of surprises all the time. Good luck getting on a new treatment quickly - if its contained to the breast would they maybe just do surgery?
@illimae adorable! How are the burros and the other wildlife doing on the hill? I was telling my hubs about hey, if Mae and her man can sell everything, pack it up and move to a relatively unfinished (at the time) cabin on a remote hill, we can make it home from the UK. He envied the remoteness, just for a minute :)
Things here ok, I was up and about a lot yesterday with hospital for flush, quick chest CT scan (and the best bolster job Ive had in months, I was actually comfortable for once), and I made my own dinner last night people! This is huge, I havent been able to do that since March - usually OH sorts me out and does the cooking/assembling, but he was out with old friends turning over a glass for one who committed suicide/overdose, so I wanted him to have all the space and time for that without worrying about me. I put my chicken nugget dippers (dont judge! :)) in the oven and made a baked potato and a chocolate milkshake. Got my wraps off and put myself to bed even though by then my good leg was shaky tired. I was exhausted today and slept a bunch but still managed my arm workout and 10 mins of chair yoga. I had a call with pain management doctor about reducing meds and he, as always, let slip something about 'the chemo is working' - I know they had a day turn around on my scan read so it may have been top of my notes. I have a call Monday with MO, so lets see what she says.
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@sondraf So happy you had a good day yesterday. It's the little blessings that keep us going! Here's hoping your scan is good.
@illimae Love the pictures. I don't miss the house but I do miss our living near the hills. We were in a deer path and had them constantly. The elk and deer are not on the plains where we live now having been pushed out further with all the new construction. And I swear the mama dear brought their babies to us to see.
@mara51506 You are so creative and brave with your meals. I am trying to cook more healthy for my little family of four but the DGD is super picky and barely eats anything I try. It is discouraging. This has been going on for years (she is nine.) If it were just the DH and I we would eat differently. And I don't have energy to fix two meals as I barely get one done! We make her try everything hoping someday she will improve. I do throw in something I know she will eat if I get too creative and fear she will just shut down. Sometimes I separate what she will eat, like chicken or plain pasta, before I throw the rest into the meal. At least she gets that. Trying to disquise anything doesn't work. She is too smart for that.
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Mara - When you mentioned Tide, I could smell it. My mother used Tide and I would know that scent anywhere, after growing up with it. I've never used it myself, but I think about maybe getting some once in a while when I get nostalgic about growing up and missing the family, etc.
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I told my DH last night after dinner that I refuse to cook any more this week. I. Made. A big dinner for him and my son two days in a row. Last night Breaded and backedthick chicken. Breast cutlets, in wine. Sauce with Dutch noodles and the night before, porterhouse steaks and salad with bluecheese& croutons. Uggggh‼️ Cooking just takes. Sooo much out of me and the pain in my uppper spine and exhaustion is overwhelming as I I straight up he kitchen afterwards, jus wiping the counters, and putting things back in the refrigerator. The I escape back upstairs to my bedroom. And collapse on the bed with my dogs following me. I get so out of breath going upstairs and feel so weak from the bone pain in my spine. It’s so overwhelming and for this reason it’s one thing I don’t do anymore. DH handles the pots & pans and any dishes after. I put stuff back in the refrigerator and wipe down. here’s the joke…..Dear daughter says to me the other day, Mom I hope you plan On making the turkey on Thanksgiveing because yours is the best and it wouldn’t be Thanksgiving without your Turkey. “My. Thoughts inside my head as she says this (Yeah right so learn to make the friggin recipe yourself 😒)… I’m Not doing it. I just can’t. We go to my SIL’s restaurant and I. Know it’s not MY turkey &. Stuffing but it sure is easier on me. Nope, not doing it this year. Would never survive.😤
@threetree I’m so glad you fee the same these days. As I do, and like you, I believe it’s the Verzenio and. Accumulative effects of the injections, and the fatigue of MBC. 💗
@gailmary Geesh how discouraging is that….a new primary. I hate this disease.
@illimae I love the picture of your sweet visitors. I was watching an adorable video of “The DoDo” on FB, of a woman who rescued a newborn abandoned fawn she carried home and the video was so. Heartwarming the way it came back every season to slee in a corner of her living room, after retuning. Home from the Rut in the fall with the females.🥰
@snow-drop Hey girl, In you pocket 💙
@mara51506 I’m happy you enjoyed your shopping 🛒🥰
@chicagoan in my young mother days I Zipped around town, and. Back and forthwith. The kids to school and shopping and driving them and their friends back and forth to the mall in a big Chevy Conversion Van. I love it’ s size and height 😉
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Irish, beefless ground is simply a plant based ground beef texture. It doesn't have a lot of taste until seasonings and other ingredients are added, there is no grease to speak of, can be heated up in a pan with water and taco seasoning to produce taco meat or added to any other meal really. It takes on the taste of whatever cooked or seasoned as, can be heated up quickly in the microwave as well. If you can find a binder like beans that are pulverized for example, they could be fashioned into a burger. This product is low in calorie, pretty high in protein and many other vitamins. I get mine from Walmart and the brand name is Gardein. Lentils can be added to anything really. I have never done it but with oil, a person could fry them if they wanted something crispy in a salad type dish. Like the beefless ground, I do not detect a particular taste, they just take on the taste of whatever is being prepared, super good for you as well. If you are sensitive to fiber, smaller amounts can be had as well.
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The donkeys are good, they had their little ones earlier this summer (pic of one below). I love all the baby critters this time of year.
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@shanagirl I try to cook every night, but sometimes I just can't. I have a husband and a 45 year-old daughter who are able-bodied enough to do it so they can if needed (my DH never cooked in the past.) My DD works three nights a week as a nurse and leaves right after dinner, or if she worked the night before is just waking up from sleeping all day. Cooking was always my thing and my contribution to the family since I became sick so I want to do it. My DH now asks what is planned and how can he help and is doing pretty well getting better all the time. I order my groceries delivered so I don't even do that anymore except for an occasional trip to select the meat. On days I just can't do anything they gladly chip in and come up with something. I don't do the dishes after dinner as I am always exhausted after, so my DD does them if she isn't going into work. My DH fills in when he can, or they sit rinsed in the sink until we get them done later. My house isn't nearly as clean as it used to be, but we manage. I have had to learn to accept this but it is good as I cherish every moment I can still spend at home with my family.
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Mae - Those donkeys are beautiful, and in such a beautiful setting too!
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