My Husband, My Life, My Love, My Family, My Cancer
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hi ladies. Everything went very well. The food was delicious and we had a special group come to celebrate her life and we shared a nice dinner. My heart was heavy but I had my sister there and some special cousins of my mothers. Most of her relatives are unfortunately deceased. I enjoyed hearing stories about her and I am so thankful she was my mother. It was a day to celebrate her life. But I was also celebrating my love for her . It will never fade. She was such a good mom. I was lucky to have her for 53 years.
thank you for all the well wishes and support.
love to all. Goodnight5 -
Mel Sounds like you had a beautiful day, happy for you. That Theo …such a cutie, love the pose!
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here is Theo in his spring hat! Lol
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Mel - So glad to hear that things went so well yesterday. Also love the picture of Theo in his " Easter Bonnet". So cute - thanks for posting!
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I am so glad it was a good celebration of life and dinner, I am glad you got some stories from other people and had her for 53 years. She would have been looking smiling.
I love Theo's hat.
It is sunny again so planning an outdoor 30 min walk again. Got some music videos playing on TV that pay me to watch the ads which is fine, I can do that, I have enough saved that delivery will be free by the time I order from Walmart again. Got to say that next time I go to Costco, I will NOT allow spending unless for eggs. I bought nothing but junk food and oxiclean and that was 50.00. Forget it. Waste of money. Needs to be more sensible given how I like to spend. I can get no name chips to add to beans and it would be much cheaper. I've done most of the PT needed. I am now doing sit to stands sitting on my toilet with the lid down, it is the lowest thing in the house and a better strength builder for me. I like to lean my body forward a bit and that makes it really easy. On things left are some wall pushups later and 10 steps up stair stepper on each leg. I am not going crazy with stuff, just need to be able to accomplish things. Also am going to do some ankle work, lifted heels and lifted front of feet already, just have to move across the floor using ankles.
I may also need to book a ride to best buy to get a new laptop. My one I have been trying to fix may be dead and the one being used now is dying as well. I am not particularly said, I love technology shopping but we will see what happens, looking for sales as my laptop does not need to be able to play wonderful games. I've had the laptops going on almost 10 years, they really do not owe me anything. We will see.
In everyone's pocket who needs me hoping we all have a lovely day.
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Mel - Im glad your special mother's event went off so well and you could feel the love for her from everyone in the room, as well as within yourself. I hope you can carry that for a long time to come. And Theo in his spring hat is just precious!
emac - I was very sorry to read some ways back of your most recent update, you had taken the lung pleura mets and the new brain mets in your stride, so to get a whack like this is disappointing. Ive been thinking of you and how you are getting on, but take care of yourself and find joy where you can.
Tina2- I was also sad to see your update, and that our last sister had washed out of our little A/A group. But you seem to be a real tough lady who gets good breaks, so whatever your future may be in the near term, Im guessing it will be interesting. :) Best wishes and luck and drop in and let us know how you are doing :)
I spent all of last week getting hauled in daily to the hospital after I popped at 102.3F fever on routine obs before my injections Tuesday. Had no idea, thats the kind of fever you feel in your eyeballs. I should have insisted on another thermometer, but nope, between that and them trying to get an ECG off me when I can't lay down (not to mention was shivering in the cold room) = DAYS of investigations. My MO is off so now the junior locum had something to track down. I got dumped in a CT, run over by Ultrasound, gave a ton of urine, multiple canulas to the point they are going from the side of my arm now, bags of fluid (why I dont know, I drink all day long), every blood test under the sun, etc. I was sleeping in a wheelchair by Friday I was so exhausted and slept most of the weekend.
In the end they coudn't find the source of infection, but the foot/leg swelling and redness Id been having is 85% gone, so they should probably culture some strep Im guessing. The CT found stuff my recent PET didn't report (but could be seen, clear as day), which has been real trust inducing. MO is now off for the next two weeks but she was 'kept informed' and had signed off on some of the blood tests. Would have been real nice for her to I dunno, drop me a line or three in My Chart but crickets. I want this damn hip sorted so I can stop having issues due to poor circulation from a lack of movement. Tomorrow I call insurance about how/who to get a second opinion from because Im fed up at this point. This is another point of her dropping the ball - I reported swelling in the foot three weeks ago, and it always ends up in some medical drama where I pay the price with worsening mobility and a ton of personal and family stress.
Anyway, have to go in today, but Im curious what Ultrasound found since they were in my groin area. Today had honestly better be the end of it!
Best wishes to everyone in the living room!
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sondraf Geez I'm so sorry to hear of all this and your MO not sending you a message or something! Communication goes a very long way especially in this situation I feel it's imperative. Glad to hear your swelling is reducing I pray it is on it's way out for good. In your pocket today for good results on US and help with finding a doc on second opinion.
Mara It's hard these days, we go to the market for a couple things and boom..50 bucks! Hope you find a good deal on the laptop, certainly can't live without it.
Mel I can't stand the cuteness with his hat. Thanks for the smile this morning with my cup of coffee.
Hi to all and wishing you a good day.🌺
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Mel - so glad you and others enjoyed the celebration of your dear mom. Theo is sooo cute🥰
Sondra - can’t believe you had to go through all that with no answers. So frustrating🤬
I hope everyone has a good week, pain free and with no surprises from this relentless disease. Here for pocket duty if needed.
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Sondraf - So very sorry to read about your situation. How exasperating for you! I hope they figure it out and that it turns out to be a minimal to nothing thing. Better yet, I hope it was you who had the right idea all along (we do know our own bodies), and that they just needed a different thermometer.
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It was likely celluitis. Now we are chasing numbers with that nasty potassium chloride mixture to bring up my slightly low potassium and Im on antibiotics (and off Kisqali) now until next Monday (have to go in this Thursday and the next Monday). That's fine, Id rather get everything cleaned up and tidy, but I am more than tired of the hip pain being ignored and living no life. Sorry for ranting, Im just so in the dumps about everything.
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sondra, I think we here understand better than anywhere else. I'm so sorry and even angry that you're being dismissed and feeling ignored. It feels like we have to stand in the middle of (fill in the blank) and scream, 'WHAT DO I HAVE TO DO TO GET THIS FIXED?!?!?"
I'm feeling that a little bit right now, and, of course, feeling guilty that I'm feeling less than cared for by my MO.
Sending love and hugs to all,
Carol
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sondraf, I join with the others and rant alongside you. They need to take time and listen. Arghh!!!
Friday I woke to extreme lower back pain but didn't go to the ER because the last time the ER doc just told me I need to exercise more. There is no fever. In my anger, this time I stayed home. It has improved a little on its own since Friday…at least I can walk now. I shall message my PCP and see if he has anything to say about it. We shouldn't be hesitant to seek help.
My DD is bringing my granddaughter home from school to watch the solar eclipes today. It will only be about 60% here. They are in state testing at school and don't want to corral all the kids outside. I think this is wrong, but whatever. She will return her in time for more testing. The school actually said parents could to this. I don't understand. This should be a mega learning experience for the kids. My grandsons' school in Missouri is taking the kids outside and providing glasses, etc. as it should be. They should get 96% of the eclipse.
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Sondra, I am so sorry as well that a message was not sent for you period and of course glad that your leg is finally going down in swelling. In your pocket for other testss as well.
Cookie, I am not terribly upset, just don't want it all to be junk food. I have already saved money for the next Walmart delivery. As far as the laptop, I did get it totally system reset, still pretty slow so will download and install a diffferent operating system like chrome OS, no real rush on that. If that works, no need for another laptop. If I wind up needing one, GIC funds will pay for it. I am planning to walk but on my treadmill as it is raining a fair bit.
Planning bean and a hotdog at breakfast, same chopping in croutons with the beans and hot dog and probably some chips as well. Little bit of pasta as well, like a handful. Ate up all McD's, stayed pretty fresh for the four days. Have to figure out something with hashbrowns in the freezer as well. In the meantime washing stuff and earning money for watching TV and being paid for ads. Lots of different things I want to get done, gone 10.00 so far toward next Walmart delivery that really does not need to happen until May in my eyes.
Edited to add, came across a Kraft Dinner that only needs water so made that up, chopped the boiled hotdog, added some parm cheese and shredded cheese and mixed them in after original had been heated. Let everything thicken for a few minutes, added ketchup and a little salt, it was really, really good to me. Nutritious food will happen later. Reminded me of childhood meals with babysitters except better because I added cheese.
In pockets wherever needed and hope everyone has a good day.
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thinking of you Sondra. I feel your frustration about the MO. I’m having issues as well . How is being on Kisquali? Can you please tell me the side effects? That is apparently the medicine my new MO wants to switch me to because of my toxic reaction of my mouth and neuropathy. I’m hesitant because I know what ibrance has to offer for 8.5 years now. Thank you
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I absolutely love Theo in that hat! I needed that today 🙂
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Sondra ugh your doctors lack of medical care, information sharing, and lack professionalism is awful. Horrible. Sending support and strength. These people just live their lives and just don’t think about their patients pain and suffering.
Made a cereal box foil paper contraption with my granddaughter and it worked!!!! We had fun watching the sun get covered and uncovered. My DD in PA kids were sent home early so parents could watch eclipse. Definitely a teaching moment.
Tanya
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Sondra
So sorry you had to go through that crap. I wish there was a way to establish a volunteer "buddy" system by location. Whenever one of us has to go for medical treatment, another one of us who is having a good week can accompany her and deal with the medical staff, up to and including yelling when required.
Emac
Hope your MO is working on a good plan for your latest issue.
Mel
I have been on Kisqali for 22 cycles so far. The initial 600 mg dose was much too strong and stopped after two weeks. It was lowered to 400 mg and It took about 3 months for the GI issues to slowly improve. Now I only have fatigue, but I manage to function well most days. I exercise every day, visit friends and family and travel as much as possible. Once you adjust, I think you will be fine.
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Thanks everyone, Im wondering if 80% of my pain issues wouldn't be eliminated by a cortisone shot into the hip which is a different issue entirely to the cancer. But we all know MOs where pain = MUST BE FROM CANCER and then you get pain-splained even though your pain pattern you KNOW from experience doesn't line up. Frankly I think the small patches are actually getting better but its hidden under all these secondary and tertiary issues. Next week I have my osteo again for pelvic adjustment and if I can ever get the leg straight, into an MRI for the sports hip doctor. Waiting on a call back from insurance on second opinions and stuff - occupational health at work are going to start asking so I need to be ready anyway.
Mel - Im off Kisqali until next Monday while this cellulitis gets under control, but for the two weeks I was on it, honestly, felt fine. Probably better than Ibrance. It was also easier to take somehow, just once in the evening, and being on Fulvestrant means its just the K to take. Its definitely done a number on my neutrophils as expected, and Im sure Ill get a dose reduction next week, but overall I was pretty pleased with it, was rather wishing I'd had that and not Ibrance at the start. It could very well be causing some fatigue because all this crap does, but Id be hesitant to pin it on Kisqali when I had an infection cooking. Id certainly give it a try!
Here's a question - what do folks do for a bit of a pick me up when they are deep in the trenches of this crap? There are points in the day where all I can do is stare at a wall, but Im thinking I need to maybe make a goal to start whatever modified exercising I can do for 10 minutes a day. Its better than sitting around feeling like a lump getting weaker which causes a lot of my mental distress. As long as I can focus on this is today, its not compared to strength or capabilities I had Y months or years ago. Illimae I'd love to know how you just kept going during that long time period you couldn't eat.
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Eleanora - Love your buddy system idea.
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Sondra, bed workouts work well for me, there are full body workouts and stretching from bed and they are vigourous as well Paul Eugene senior gold can be done and make you feel good, marching in a chair to music as a pick me up. Bed or chair are recognized and effective until walking is a possibility again.
I made some pasta, served with handful of beans, cheese, croutons and cheese chopped up served on top, heated two and a half minutes in microwave. It was pretty good, need something with eggs, checking the english muffins to see if they will suffice for an egg sandwich later should that be what I want.
Hope everyone has a good day, still in pocket for Emac as well.
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SondraF - I can't believe all the hassle you have been through. That is just unacceptable. I have had frustrations with the American healthcare system as of late but nothing like you are dealing with. With regard to dealing with all of this I rely largely on my faith which gives me hope. It also helps to focus on the plan moving forward. I need to feel like my MO and team are doing something about it all. Like you I don't want to sit around all day and feel myself getting weaker. I have to do things in short spurts like cleaning or projects I'm working on. I will do one thing and then rest and then do the next thing and rest. As the weather warms I hope to be able to get out in my yard a little because the weeds right now are atrocious but I will need help with that.
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Sondra sorry you are dealing with all that. Sometimes it feels like we are just being shoved through a cattle chute in not a whole lot of extra thought put into our case.
I keep having to fight the black hole too and try to just deal with today. For me the key is being outside and doing stuff outside, or practicing piano and doing some art when I can. Seems like doing the opposite of what I feel like doing. When I want to sit in my chair too long then I make myself get up and move. When I want to isolate myself I call or text a friend. I really enjoy watching birds. Here's a painting I did lately of the photo I never seem to get haha. I always miss the bird or he's too far away. Maybe this year I will get some photos of osprey catching fish. Anyway a hug to all here and hope you have an up day.
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that is beautiful, wish I could paint like that!! Thanks for sharing
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Really nice picture, Mkestrel!
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@mkestrel such a beautiful painting. I love your work. Well, I’ve been in a painting funk these days and I really want to get. Out of it and get back. I have so many ideas, and lots. Of unfinished projects which I want to do and don’t want to start anything new yet. Uggh., I’m so tired. Since my monthly injections and just can’t motivate my self to get back to the easel. And paintbruches. I also can’t decide if i should use up some leftover paint mixtures and do a fluid art flip cup. Oh well, I’ll deal with it tomorrow and then decide.🩵
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my dd got this cool shot of the eclipse !
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Thanks, 😊 I hope it makes you all feel like relaxing by the river in the woods.
Shanagirl I relate and hope you can have some energy at the same time as a creative mode. I saw some of your beautiful work posted here too. Painting took a while because I had to keep taking breaks. I'd like to try oils but don't have a good place to do it. I'm very messy 😂
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