My Husband, My Life, My Love, My Family, My Cancer
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Micmel, I'm glad your Dh and dss are there this weekend! I love Costco! Ours is all the way to Mayo, so I try to go after my appointments. I would like to offer some advice. You sound like how I felt on 100mg Ibrance, I went down to 75mg and my qol is way better. What if you dropped to 100mg, there is no clinical evidence that there is a difference in efficacy. I bet you would sleep less and have more energy. It sure worked for me. I wanted to quit because my quality was so bad. Maybe discuss with your MO at your appointment. You know I will bee standing with you and Mae while you have your scans! Mine is Dec 12th. Have a great weekend!
Mae, you rock those sunglasses and that hard hat! Have fun with your friends at the party! Beer and Barbq! All is well with the world!
Lynne(50:-) I love your pictures! Also, so kind and thoughtful what you said to Micmel, as usual! I hope you are soaking up every minute!
We are sitting on our back deck, enjoying the sound of falling water from our pool fountains! We did not go camping , but are doing a day ride tomorrow, then our favorite pizza place after!
Have a wonderful, pain free weekend everyone! Hugs and prayers,
Claudia
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The full moon through
Our trees
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Hello ladies~ I just wanted to check in and see and hope everyone is having a good weekend. I am starting to slide into my worm hole again. This scan thing is freaking me out. I can't seem to shake it off. I am just filled with silent terror. I don't really think there are words for this type of feeling. It grips you, and takes away your air. Your ability to feel safe ever again. I hope you are all ok!
Who the hell wants to go through this crap, look at our precious Lita, fighting with everything she has, you can hear she's tired. My heart is breaking, all the sadness and pain and there isn't an effin thing we can do about it.
Mae~ 💕Scanning together
Claudia ~Thank you for reminding me of the dose reduction. I need to look into that. Thanks for caring and going through all of this together. Loved that full moon 🌕 we saw ours last night also. DH noticed and called me outside. All I could think was, such a beautiful place, how long will I be here?,I don't want to suffer.
Lynne(50's)~ thanks again for that post. It meant a lot. I'm so glad you're here.
Everyone sleep well, I'll try to pull my head out of my ass. No guarantees though!
Much love ~M~
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another night of tossing and turning with worry about up coming scanning. I hate everything about having cancer, except all of you wonderful ladies. ~M
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I just discovered online grocery shopping...WOW that is easy and great, I can go in morning and pick it up and don't need to walk around grocery store...now if they would just clean my fridge and put groceries away..
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Hello all of you wonderful ladies.
Mae- you’re just too darn cute! Maybe I’m a weirdo, but you have the most adorable nose! You’re a rockstar with this whole cancer b.s.!
Mel-hang in there sweetheart, you will get through this dark time! Any chance of upping the dose of Effexor? I take the highest dose of celexa, my depression is gripping on and squeezing the life and happiness out of me. Here I am NED and scared shitless! If I could up my dose,I would!
Claudia- what beautiful horses! We hope and pray that someday,we can build a barn and get a couple of our own. As well as pygmy goats and chickens. We bought this property, and two weeks later,my husband got in the accident. Not sure if,or when we will be fulfilling our dreams. He hasn’t worked a day,since March 10th. We haven’t been able to landscape or anything. It has been such a depressing time. We had such hopes....
Lynn Bedford- You two deserve every ray of sunshine! Soak it up,the sun,the food,the beach and most of all each other! Keep the beautiful pictures coming!
I have a tough week ahead. I have an MRI of the brain today,Tuesday an MRI of my breasts,Thursday I have an arthrogram of my right hip as well as an MRI of both hips and pelvis. I may not be Ned much longer! Been avoiding these scans for a couple of months!!! I rescheduled twice! I’m just praying for the strength to get through them! The brain ones suck!!! My thoughts and prayers are with us all. ❤️
Love Chelle
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Keetmom~you crack me up lol good information about the grocery store. I feel like I should have known that because my kids both used to work at grocery stores. I am wondering if there is a un stocking fee somewhere in there. Let us know how it goes. Hope the girls and hubby are all doing well!! Big hugs darling. ~M~
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Chelle~ hi there lovely! It seems some of us are in the same place Right now with the scans coming up. I wish I had a magic pill. Literally!! I careen out of control with grippingly paralyzed fear I cannot shake no matter what I do. It is terrible. I Am with you Chelle, and Mae I am thinking of you as well. It is times like these I wish we were all close to where we all live. The support would be priceless. I don't even know how to get out of bed when I feel like this. You ladies do help. Yes you do. Much love ~M~ I am not Ned but I am NEAD. And I want us to keep both of those letters!!
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I didn't realize you could reschedule!!!!! I never even thought of that. Maybe I'll develop a cough. Ugh! What to do.... what to do..... lol no seriously you rescheduled your scans two times ? I am interested in that!! ~M~
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Mae and Mel-I hope you both get great news on your scans on the 14, mu scans are the 13th.
Lynne-beautiful pics! Hope you're enjoying your vacation!
I am in my "ickky" week. I had chemo on Tues and once I stop the Decadron (which I did on Thurs), I finally get to sleep again, but the diarrhea, dizziness, just feeling yucky starts. It lasts about a week. Thrush in my mouth, yeast infection, every 3 weeks from the steroids. So sick of it. Just hanging out today and watching shows I recorded. Tomorrow is suppose to be almost 70 degrees. I'm going to attempt to get out (at least in the back yard) tomorrow.
Hope you are all having a great day!
Lynne
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Lynne~ I can't believe all of us are scanning so closely together like this. Chelle same thing for this week. Then we all go next week. I am sorry that you're having your icky week. All too familiar it is. But I still know exactly how it feels. Everything about cancer is just awful. Just relax and watch your shows. I'm going to be doing the same thing, my DH and DSS are leaving today. Another week to go through. It's just so hard. Just like you said Lynne. I am so sick of it. I am right there with you my dear! I don't know how we haven't lost our minds long ago. It will drive you crazy. I wish there was just something I could do. But you're not alone. We will be right there with you scanning on the 13th. That is my bloodwork day. I'll be holding you all close. ~M~
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insomnia kicking in already i Am afraid! I don't want it to be one of those nights! They are tossing and turning and thinking nights. I would watch tv, but I can only do that so late before it starts to annoy me.my mind needs to rest at least. I guess you're just awake with the combination of medicines and stress and anxiety, if I don't sleep well tonight , tomorrow I won't be able to get anything done at all. Sucks out loud. But that is the way it is. My battery drains rather quickly. Blah! Hope you ladies can sleep.(Chelle)
Well, I also have a dry annoying cough like in my chest. I hear my DS doing it and so was my DSS, so I am starting thatnow. Supposed to rain Tomorrow l, which means I can't get grand puppy. Hope everyone sleeps we'll. Much love ~M~
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Micmel, I am here. Of course it is only 6:30 p.m. here, so it is okay for me to be awake. I have been thinking of your predicament. You have trouble sleeping, you worry about your scans and your future, you are tired all the time, you have pain. You have mentioned that you take many medications, and you don't like having to do that. Have you considered seeing a palliative care specialist? Palliative care doctors help treat people with chronic or serious illnesses and aim to improve QOL. It is NOT like hospice at all. A palliative care specialist can be seen very early in an illness or anytime along the way. They can review all your medications and might recommend adjustments to better manage pain, anxiety, and sleep patterns, for example. This would be done in consultation with your MO. Most cancer centers either have a palliative care specialist on site or can refer patients to one. It's just a thought. Maybe you can ask your mo. I worry about you and want you to enjoy life more. Of course, you might already see such a specialist. Btw, you can just tell me to mind my own business!
Chelle, yes, you do have a tough week ahead. I hope at the end of it, you can still tell us that you are NEAD.
Good luck to everyone who is having scans this week. My thoughts and prayers are with you.
Hugs from, Lynne
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Here are a few more pictures. First, the tropical drinks my DH and I have - our morning coffee and our bottled water. That's about as wild as we get.
Next,me in my sun hat.
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Photos of tonight's sunset. They aren't from my good camera, but still okay, interesting maybe.
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Lynn, that’s exactly our kind of crazy!! And people think that getting old is boring! Ha,we will show them!!!
Pat and I have never been drinkers..... not even when we were young!
You look fantastic,healthy,happy, rested!! Enjoy this fabulous time with dh!
Love chelle
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Chelle, adorable has never been used to describe my nose but I'll take it, lol!
So many trips, Jamaica, Hawaii, happy for you all
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Lynne(50s)~ I have an excellent palliative care doctor and she and I have been adjusting the antidepressant doseage, it has just been raised to 75 mg, My issues are emotional fear of progression that we all have to live with. I don't think there is anything else that can be done. I have some pain, on and off and it also depends on where in my cycle I am on ibrance. I think I am also afraid of hearing that the ibrance has failed and I may have to move on to something else. That alone terrifies me.Honestly I have nagging back pain near my spine 5mg Percocet keeps that at bay, it's just that bone cancer feeling. Like the flu being in every cell of your body, every single day. When I do manage to fall asleep, I could honestly sleep for 15 hours or more with ease. The fatigue is my biggest enemy, I even have ritilan for that, but I hate feeling like my engine is always running on fake gas.
I am loving your pictures!!! The sunset or rise depending on what time you took it looks so peaceful and magical. I have always thought places like that were magical. Someplace so beautiful? You think you may need a pinch for it to be real , I am officially now convinced I am the only One who cannot rock a hat! Everyone looks so good!!Beauty! I adore that you're having such a lovely time with your DH. Make those memories my sweet friend!! Thank you for always being so kind and caring. Your posts always lift me up, I am glad you have found our little place, with some really good loving people. ❤️Enjoy every second, every second. Keep those pics coming ! Living vicariously through you all. Much love ~M~
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Chelle~I am so with you guys and the not able to really drink. Ever since heavy chemo I can't handle carbonated drinks. It hurts my esophagus and makes me feel like my belly will pop. Also sometimes indigestion, like air bubbles are stuck! I prefer water anyway over many things because all of the rest of them are packed with sugar! You're not old!!! No you're not. Another reason this disease is soo maddening. Lovely ladies, beautiful women, holding their heads high no matter what comes our way. I guess the phrase making lemons out of lemonade sometimes can ring true! And I agree Mae's nose is adorable, you're also pretty adorable. You all are my friends! Much love ~M~
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Mae~Hello lovely, sorry but I have to agree with her! Your nose is adorable. Beautiful skin as well! You're glowing. I slept until 1100. I feel so lazy all the time the fatigue from 125 mg is horrible. I am considering asking for a doseage reduction,of ibrance if I am allowed to even continue on it. Only scans will tell. Effin scans. I hate you! I'm with you Mae. Ifonly we could go together! Big hugs. And much love ~M~
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Hey guys, question for you all. I received a request to join a metastatic project and they take some of your banked tumor and research it along with other people in the project. You also provide a saliva sample and they test that also, to see if there are common components that they can identify in our immune system. I have to sign a release for my medical records. But at this point who cares. I could die next year and maybe It would help someone Else never feel the way I have felt. Anyone else seen this and Or have done this? Seems like a good idea to gain more research and attention to MBC. Let me know your thoughts, before I sign!!
Love you guys!
Haven't seen our precious Nan. I love you Nan!! Miss you
NKB~ miss your rational thoughts!!
Much love ~M~
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I've started the process and completed the authorizations but I got delayed by the brain mets and the saliva sample is sitting on my kitchen table. I'm doing for the opportunity for researchers to learn and help others but you never know, things like this could lead to breakthroughs that help us too.
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Michael, I sent my spit to the Metastatic Breat Cancer Project headed by Nikhil Wagel at the Broad Istitute in Cambridge, MA almost two years ago. I did sign a release to have my medical records and a piece of my tumor sample sent to them. They did receive everything. I will not receive any individual results of the research since the intent is to learn more about the disease, determine why people respond differently to treatments, and ultimately to find a cure. They recently announced that they are now ready to release preliminary data so others can use it in research. As you probably know, researchers historically have worked in silos, not sharing data, and in some cases duplicating efforts. I met Dr. Wagel last year at the annual MBC symposium at Dana Farber. At lunch he sat with me and another person whom I met on these boards. He is a warm, friendly person who is passionate about his work. His is the first project that reached out directly to people with MBC. I hope their efforts pay off. It would be very nice if we benefited from the research, but if they find a cure, even for future generations, I am all for it. They need to eliminate MBC or at least turn it into a no no-terminal disease.
Hugs and prayers, Lynne
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Mae~are you still going to finish the sample and send it in? I'm wondering what my onc would think or say? Did you just sign electronically? I am going to do it! Just wondered more about it. I agree to help anyone would be wonderful in the future. I Am just sick of the entire thing as we all are. Some days I feel less pain, then others right at the base of my spine. Just feels Iike little termites having a a feast on my bones. Very strange feeling. Then weeks and weeks it goes away. Such a maddening disease! I am two episodes behind on American horror Mae, I am ashamed lol I don't know what happened. I'm going to catch up! You're all on my mind! Much love ~M~
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Lynne(50s)~Two years ago, wow! Ok. Then it is a real project. Sounds like a good man and I am going to do it. I just wanted to ask if anyone else has done it, or heard about it. I don't want my name and information crawling all over The place, if you know what I mean. It makes me feel even better that you have met him. That's something else. I hope everyday and every minute, that somehow we all go into remission and then the cure comes along. But look at you!! In Hawaii! We can do It together until that time comes. Lean on each other. I still wish we all were closer in location. 😕 Much love ~M~
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Yes, I'm going to finish. I have to clean off the table this week anyways, lol. Seems a worthy cause for little effort on my part.
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What is cleaning? I can't remember. It's been so long since I've even cared. As long as the room I am in is clean I am good To go. I never have any appetite, ok except for seet things. I have to admit. Then I hear everyone who doesn't have cancer say "oh thats why you got cancer" it's not like I inject sugar into my veins!! I do enjoy a good Twix bar! I never drank or smoked cigarettes? Was never over weight until now! Because of all the medicine! Argggg throw in cleaning !? Yikes. Lol
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Sent my spit in too! I think it was last year. Anything I can do so that someone in the future doesn't have to go through this $&/#% .
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I will also do it. I just don't like the thought of any additional information about me out there. It's creepy. I mean I agree completely with everyone on helping in any way possible. So I will do it. Hopefully somewhere down the line a women wouldn't have to worry about losing her life when her (or his) cancer goes rogue. I know I Am over sensitive this week especially, scanxiety is real! I just don't know how people are supposed to live like this? It's a scary road to walk. ~M~
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Hi all! Right up there with you on the scanxiety! Mine is on the 21st. Hoping and praying for good news for all of us!!!
Mel, I did something similar quite a while back on the study thing, but it was something different I’m sure because it was when I had my first cancer back in 2007.
Praying for less pain and anxiety for all of us!
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