My Husband, My Life, My Love, My Family, My Cancer
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yay Candy, I would have done the same thing. Thanks for sticking up for us MBC sisters! Really need more info out there. No one gets it. Today I talked to a Custer service representative and she said. “Oh I hope they are making you comfortable” like it was my last day. It was awkward as usual. I just let it go. Rather get off the phone But yes. No one is educated about it. No one,!!
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Candy, I think you did not diminish anyone's message by saying that for some people this anxiety is a constant carousel of tension that will never be done. There is treatment and then there is Treatment, capital T. People don't understand it clearly enough.
Mae, when you said you had a Lita moment, I knew where you were headed. I remember once we all had a Norwalk-like virus here in the house and within 3 hours each of our 3 bathrooms had a miserable person either on the toilet with their head in a bucket, or laying on the floor beside the toilet curled in agony, waiting for the next bout of pooping and puking. I am so sorry for you, this is a hateful place to be.Shetland, your post is alarming and worrying and I think you've had solid advice here that you are free to pull the plug if things are unbearable. I hope you feel better soon, by some miracle. I hope a miracle for everyone but failing that, support and a hug.
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Quick update from the ER. I am getting fluids for dehydration and probably will get electrolytes too. I informed the trial nurse yesterday that I was stopping the neratinib. I have to consider whether I will resume once I recover. If I do resume I will not go back on the same dose, even if they say they will kick me out if the trial.
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SP,
Oh, no! I know you don't want to be at the hospital but I am also sure that you are grateful to be receiving fluids and electrolytes to get your system back in sync. Hope you feel better soon.
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Shetland ~Oh no! This has not been the week for hospital stays. I am so hoping that your fluids will be restored soon and your body can have a little time to heal itself. All these damn medicines make us so weak. How on earth are we to fight that? You're all in my mind. 🌹♥️
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SP I hope they'll let you out of the hospital soon. Fluids and electrolytes will have you a bit perked up in no time. Good that you can re-think this trial medication/dosage. Take your time. You're in the driver's seat. Sending a hug.
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I have some scans coming up and some Blood work in early March. Not to many complaints. But the occasional twinge of wonder with an ache or pain. I am going to need some pocket dwellers. It always helps to know the support is real. I’m just starting to think about all of this. Because scanxiety is rearing it’s ugly head. It comes and goes. But I don’t feel any worse Somedays more tired than others. But other days I actually feel like I am semi normal.. it’s just the worry of stepping into that world again after 9months of not scanning. It gets too long. And the mind temporarily forgets!
I hope everyone is doing really at least better today. It’s really all we can do. Sending out love... to all!!
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waving to Moomala! Hope you’re slowly also feeling better. My sinus infection is hanging on and pissing me off. I get so annoyed when we catch a bug. It makes having cancer that much harder. Hugs to you sweet lady.
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Thinking of you Shetland, one ER buddy to another 🙂
Quick shoutout to the lurkers here. I’ve received several PM’s related to my recent troubles with advice, encouragement and well wishes. While you may not be active participants here, you kindness is absolutely appreciated ❤️
In other news, I had a big ol pity party yesterday. I broke down in the neuro rads oncs office yesterday while explaining how sick I’ve been lately. We discussed my last rads appointment in the afternoon and a Brain MRI last night and I cried and stomped my feet and said “I shouldn’t have to do any of this shit, it’s my fucking birthday”. She wished my a happy birthday but really?, I’ll be at the cancer center all night and I can’t eat steak or cake, smh. I like her and she meant well but WTF?
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Mae~I am so sorry that you had that inevitable breakdown of emotions. You’re going through a tremendous ordeal. I just want you to be able to put this in your rear view mirror and get ready for catching creatures on the critter cam at the cabin. We adore you sweet sister. So Happy Birthday. 🎊🎂🎉🎈🎁 we can always hammer out some steak later. When you can have a 18oz!! Cooked to perfection! I am hugging you and thinking of you...
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hello my friends!
Shetland - I hope you feel better ASAP and the fluids and electrolytes do your body good. I would be at a crossroads with the trial. It’s so hard to know if it makes sense to keep plugging away and that what you are experiencing is part of the uncomfortable journey or is a sign to stop. I hope you find answers that you are comfortable with. Keeping you in my thoughts ❤️
Mae - good for you for crying, getting pissed and raising your voice! I would be very upset too! I love my birthday too. I was diagnosed and going through the biopsies and scans on my 40th birthday. All huge 40th bday plans down the drain. What a way to spend a milestone 😑. I do hope you get comfortable enough that you are able to eat steak and cake. My rule of birthdays is that we get to celebrate ALL MONTH long. And if we miss it, we get to flow over into the next months! I see that steak and cake in your future!
To everyone else, big hugs and chocolate all around. I am with you on the scans and scanxiety! Micmel we are never free from worry with MBC. No matter how well we are doing, it would be odd to be completely calm about any ache or pain or twinge. Since this cancer is so sneaky and surprised the hell outta most of us anyway! I have my Petscan (FINALLY!!) scheduled for Monday morning!
I had an endoscopy yesterday morning to follow up from the gastritis. Turns out I have several little ulcers!!! That was a surprise!! I figured maybe one, but geez, several?? Not much to do about it except stay on the Protonix!
Love and hugs to all accepting them,
Philly
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This podcast contains vital information on how various foods affect our health and breast cancer in particular....enjoy!
Listen to Sea Vegetables from Nutrition Facts with Dr. Greger on Apple Podcasts.
https://podcasts.apple.com/us/podcast/nutrition-facts-with-dr-greger/id1183093544?i=1000466154968
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Philly, I will take the chocolate as I am an addict. I am sorry to hear you have ulcers but glad you have meds.
Mae, I am so sorry this has been such a shitty time over these last weeks. Of course you would break down from feeling awful and stressed out about not recovering. Not being able to properly celebrate your birthday either. I hope things straighten out sooner as opposed to later. Hope they have also given drugs that will relive symptoms as well.
Shetland, I am glad you are in hospital replenishing fluids and don't blame you reconsidering the drug. You need QOL above all else and what you have gone through is the antithesis of that. I have been thinking about you and wishing everything would settle down.
Mel, of course I will be in your pocket when you need me, as I do for anyone who needs it.
Myself, have stayed in last few days, still fearful of falling but am training lifting the right foot almost like a march so it doesn't drop and cause me to stumble. I do need cheese so I have to go to the grocery store today. Not walking 8 km for a while. Going to get my steps on treadmill in 5 minute bursts, take a few minutes off and keep going for as long as I want to.
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Hi ladies
Shetland get home soon and reduce dose on trial. Feel better real soon.
Mae I await the day that’s coming soon where you can have lobsters steak and whatever delicious food and beverages are on tap. Sometimes the emotions just come roaring out; we keep so much inside or else we’d be raving lunatics.
Frisky I plan to watch the podcast later. Should I eat whatever I want before I watch?
Philly I may take a ride to sprouts to get whatever healthy chocolate they have that you guys were talking about.
Mel I’ll be in your pocket for scans. There’s been a long break. Esteem your scans this time so I know by March you’ll be needing major pocket duty.
We need to have after scanxiety activities for before and after along with pocket duty full of whatever delicious decadent delights we can muster!
Mara hope you get out and about with the strength you’ve been. Holding and get some delicious cheese. I made a concoction last night bc I had to use bag of baby kale 🥬 or toss it very soon and a half bag of spinach. I sautéed garlic onions pepper with ground beef and tomato sauce and threw in the veggies. I also had some veggie spiral noodles and layered it with Parmesan cheese topped with mozzarella and baked it. I ate it last night it tasted good but kale was chewy. I hope Dh eats it tonight bc it’s a lot and I’ll have to freeze some.
Bev Jen and Moomala thanks for the reminders of how good Shetland will feel after those electrolytes. Hospital visits are still the pits.
Runor your families stomach virus scourge sounds like a horror movie.
Booboo hope you’re getting better from your new flu.
Tanya
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Tanya dear....that podcast has been an eye opener for me...who knew that our milk and meat products contain 200 times more growth hormones than normal cows? IGF1 has been proven to be a definitive contributor to breast cancers....but of course, now that the horse is out of the barn, would it make any difference if we were to cut out meats and dairy?
Well...They actually conducted a study and found that it cuts the risk of cancer cell growth by 50%...those are staggering number—she says as she eats her delicious Buffalo meat burger that was raised without added growth hormones and antibiotics....
Will it make any difference in the end? I'm not sure...but the buffalo burger tastes a lot better than the ground beef I was eating before...
The Greeks once said: Measure is All, so I find consolation in that wisdom when I enjoy the occasional ice cream, mozzarella cheese ball, and delicious meat dishes...but I'm also slowly adapting the Mediterranean diet, the way I was brought up and enjoying the greater variety of foods...I recently made a fava bean patė that was very successful taste wise, no sacrifice to speak of...
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Tanya, that dinner sounds very healthy and tasty indeed. I actually substituted meat for black beans last night. Wanted a very quick simple dinner so I mushed up the black beans with a tea mug, added spinach that was chopped finely, put some shredded nacho cheese as well as queso. I seasoned with flavacol salt (1/4) of a teaspoon, garlic powder and a little taco seasoning. Threw it all in the microwave for 90 seconds. Added some tortilla chips I crumbled to the stop. It was delicious. I don't like beans particularly but having them this way was quite good and I know the black beans are good for protein and such if you tend to be slightly anemic. I don't mind substituting things for meat every once in a while. Could not truly be vegetarian as I don't like enough veggies to get all nutrients.
I am still kicking my butt to get going outside today. Already walked on the treadmill for an hour. Still having fear that I will fall again. Trying to tell myself I will not trip over a sidewalk crack since I am actively lifting the right foot more to avoid the foot drop. I am half ready, just need to get out of my sleep pants. Hair is on too. I am going to go within 15 mins. I HAVE to make myself do this. The fear is stupid. I did not even fall like that after my whole brain radiation so I have no reason to be afraid. I'll post after I go and come back.
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Hello, all my wonderful friends.
Shetland- Hope you are feeling some better after replacing your electrolytes. Not good that we have to feel like lab rats if we choose to go on a trial. (I am not on one, and makes me take a second thought on if I want to be on one in the future).
Mae- You have a right to have a screaming fit every once in a while. You have been through so much. And on your Birthday too. Crap.
Mel- Will be in your pocket. What date in March?
Philly- Finally PET next week !! Praying for no progression. But at least you will have some answers, I hope.
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So I did go out shopping. Felt like double the distance as I was paranoid about tripping so it was almost marching. Shorter strides, consciously picking up my feet, especially the right leg. Did not fall. Got a chocolate bar for a treat for FINALLY going out. I did feel nervous but did go what felt slower and more effort with picking up my feet. On regular road without cracks or inside the store, resumed a more normal pace. Will keep using an almost march on the treadmill to keep up the habit.
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Frisky and Mara, all this talk about hormones and antibiotics makes me wonder what the laws are concerning the raising of food animals in the USA? Here in Canada the use of excessive hormones and excessive antibiotics has been illegal for years. If your beef fails the tests, it does not get sent into the food chain! As a kid who grew up on a working ranch, we gave our cattle antibiotics when they were sick or injured, when they needed an antibiotic, because to NOT do so is negligent and abusive farming practice. You have a sick or injured cow, you treat the damn thing! You don't leave it suffering. But this is VASTLY different than the claims I constantly hear about antibiotic levels in our meat. Most humans, if they had a hunk of their flesh analyzed, would probably test high for antibiotics because many of us go to the doc when we are sick and need an antibiotic!
Mass raised chickens are another story. Chickens are usually fed food that contains antibiotics in the first few weeks of their life, until their own immune system takes over. Otherwise they would drop dead in droves from basic illnesses. I have SERIOUS issues with the way poultry are kept in North America. I think it is gross and abusive and needs a change. But chicken is considered cheap meat. Why? Because it grows fast, uses very little land mass per pound of meat, chickens are an excellent converter of food and if they were constantly fed hormones and antibiotics, you would not be able to afford to buy chicken meat. Hormones and antibiotics do not come cheap. This all would add to the bottom line of the producer. Meat birds are selectively bred (not genetically mutilated, HUGE difference) to grow at an alarming rate WITHOUT the use of hormones. In fact, they grow so fast that their own bones and hearts cannot support them. Their bones bend and break and as they get bigger, more and more of them die of heart attacks. The LAST thing you would want to do is cause more casualties by giving these poor chickens growth hormones! It just doesn't happen.
The idea that buffalo is a wild and natural meat is bonkers. Buffalo are farmed. That means they are managed. That means when they are ill or injured they get treated. That means antibiotics. The only antibiotic free buffalo you are going to eat is one you shoot, skin, gut and cut yourself. I roll my eyes when I see something packaged as hormone free, antibiotic free. Yeah...so what..all the other meat in the meat cooler can say the same. That's the law here.
When I eat my burger at the A&W and read the posters they have that their chickens are fed an all natural vegetarian diet I roll my eyes. That's abuse! Chickens ARE NOT vegetarians !! They are fat, fluffy vultures, omnivores, will eat anything that moves and happily eat each other. Vegetarians my ass. And that is my farming rant for the day.0 -
OK will likely miss folk here but I’m sure you will forgive me...
Mae love your new avatar... and the attitude, despite some really big stuff.
Shetland hope you are improving despite spending way too much time in hospital and feeling very rough.
Mara Keep marching
Micmel just keep being you.
Moderators can we please make the typing thing a bit easier and a like button? I often have text automatically deleted and have to start all over again! And why can’t we just ‘ like’ a post?
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beautiful Mae! Hello ladies. Watching the Andy Griffith show. It is showing my age. I used to think ugh god that’s awful. Black and white? No way too cool for that! Love it. Harmless funny show for sure. I need distractions. I forgot about my cross stitching! Duh! See what a sinus infection can do to you? For Christmas my doctors office sent a gift for my family. I got a vanity and I love it. Just wish I could have more energy to sit at it.
I’m just thankful they thought of me. This Christmas restored some faith in humans for a while. I wish I could snap my fingers and have us be well. Together! Just like we are here. It’s already been a year since Dianarose has passed away. Time is fleeting. How on earth do we not loose our minds? Dealing with all this shit! Leave us alone cancer! Buzz off !
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waving to Runor ,Karen, Tanya, BooBoo, Moomala, Simone, Rosie, Candy,Mara, Frisky, BevJen,Sweet Philly! Shetland.....Dodgersgirl Lynnwood, Chicagoan,MJH, love to all. Sandi beaches hello !. Rabbit. Thinking of you as well
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Hi to Everyone,
Mae and Shetland, I hope these awful effects are on their way out for you both. This is where those terms strong and brave come in, that people use to describe us. Whether or not you’re feeling that way, you are enduring so much and still seeing those better days ahead. I think the words fit you both. Moomala, you too. In a sense I think we all qualify but for me right now I’m just plodding along.
Mel, That sinus infection has hit you hard. I assume you’re on some meds for it? Or is it just running it’s course? The vanity sounds like such a nice gift from your doctors. They must really care about you. 💖
So it seems that I’m now dealing with a parathyroid issue. MO has been watching my calcium levels rise in the last couple labs and this time ran the pth, which came back showing the problem. I’ll see my MO tomorrow and get a referral for an endocrinologist. From reading, this is a surgical fix, removing benign tumor (s) from the neck, not cancer. Rads are going ok, 6 days in, yahoo. I’m wondering how MBC and rads going on will effect this parathyroid problem.
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Rosie, isn’t it always something? It truly becomes too much to bare. I’m on round two of antibiotics,usually takes about that much, I’m sick of grey skies, clouds, dreariness, I think this year I’ll be happy for springtime, not allergies. But the sunshine! That big yellow ball in the sky! I hope when you see your doctor you feel better with his information! Thinking goes everywhere here this week for everyone.
Daniel~ hows Leslie? Gabriel? Hope all is well. I wish we could learn a out our Parry,! I hate that. People just go away. It’s hard.
Grannax~ hope you’re well
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Well, I just came home from the hospital myself after visiting emergency. I had gone for my walk, everything went fine, was on the phone with a friend when started feeling like everything was going grey. Got to my bedroom and still felt really foggy and confused and nauseated. Called SIL and we decided should go to emerg. Luckily, I was put on priority given my brain met history. Had a ct and xray of lungs, bloodwork. All came back normai. No idea what is causing my random bouts of faintness, nothing physical it seems. I took my BP before I was completely out of it and that was normal too. I am thankful it was not caused by my brain acting up but this is really confusing as to why I would pass out. No rhyme or reason and just really scary.
You guys have so much worse going on that I feel whiny, but I am just so frustrated that nothing could be pinpointed to explain my foggy and faint brain. My SIL said I was asking where my mother was. That is scary since I know she passed last year. Oh well. going to get to bed after I feed my starving cats and file it under really stupid evening. Count my blessings that lungs and brain are still stable and move on I guess. I think I will stay home tomorrow.
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I'll be in your pocket Mel along with a bunch of other ladies. Just tell us the day.
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Mara could your malaise have been caused by something you ate that didn't sit well?
Food is usually the main protagonist in all sorts of unexplainable reaction in my body, from foggy head to being nauseous.
Runor...talking about chickens not being vegetarian....do you know what else they have been feeding them to accelerate their growth artificially in this country? ARSENIC! A major carcinogenic. I stopped eating chickens about fifteen years ago...sadly, a lot of good it's done me....
Here's some detailed information about chickens and arsenic...
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Happy belated birthday illimae. Sorry it was so emotional but sometimes it's just better to let out some steam. I like you're new pic. Threw me off for a sec as I've been used to the old one for the past couple years. Maybe I should change mine too.
Mara that sounds scary. Hope they figure it out soon.
Micmel, I'm in for pocket duty!
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Mara~Oh honey. I am so sorry. That is some scary shit to go through. I get dizziness a lot and it scares the bejesus out of me. I am so thankful you're ok and that you did go to the er to get checked out. I am a huge chicken I don't know if I would speak up About it even, but I guess when you get the greys. You have NO choice. I'm thankful again you weren't hurt. Hugging you.
Thank you LEGO and Simone! Not sure the dates yet. Bloodwork first. Oh joy Those infusions center smells we all know and love NOT!! The pot of shit stew just keeps a stirring. But Mara. Thank goodness you're still stable. There are a lot of sinus and cold issues going around I believe mine is now settling in my ear. Isn't that special? Ugh! One thing after another After another Then comes along this thing that sucks. Oh as let's not forget about how shitty February really already has been. Here comes the March for me to the month of testing. I feel like dead woman walking, pain sometimes I'm like whoa. Where did that come from ? Also, initially getting out of bed. It's the anastrazole I am sure. But I feel 90. I need like a good 10 mins to fully get my parts moving, including my foggy brain. I want to get off of this ride so much. We all do I know
Off to a shower. Cantput it off anymore. Even with adderall, I still feel sluggish. Somedays I just want someone else's body life. Not switching lives per say, just health. I want a healthy body again. So badly. I know again we all do !!!
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good morning dear friends!
Just popping in to share some love ❤️
Hope that anyone who’s feeling badly finds some relief today and anyone that feels well is able to carpe diem and get to do the things you set out to do...or if not be content with whatever it is you end up doing!
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