My Husband, My Life, My Love, My Family, My Cancer
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Kittykat - I am so sorry to hear of your progression to the brain. Discussions with family are difficult but I know your daughter will be there with you through thick and thin 💙 My thoughts and prayers are with you.
Candy- happy to hear your PCP has a definite plan to get to the bottom of the fever.
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Hi, everyone! I haven’t posted in a while, but I’m following along. I’m sorry for KittyKat and Candy and anyone else who’s struggling and saying hi to all the other ladies in the group who are doing well.
I hope you don’t mind, but I’d like to cross-post here because Mel’s Living Room is a great group. Please see my post below and let me know if anyone has any questions.
Here is my cross-post
For those who don't know me, my name is Kris or KBL on the forum. I've posted before about surveys I've done with RC Horowitz. They are a research company who performs surveys.
Right now they are looking for Hispanic and African American breast cancer patients who either live in New York or New Jersey and who could come to New York City on November 17, 2022, for a one-hour paid interview. It will be $225.
I will list the criteria below. Please private message me if you're interested, and I will get you in contact with the representative. Feel free to only use your screen name with me, and I will give you their email address.
Criteria:
Stage IV ER+/Her2-
Evidence of disease and symptoms at last assessment or no symptoms or no evidence of disease at last assessment.
On any of the following medications:
Afinitor Ibrance Kisqali Verzenio
and/or
Arimadex Aromasin Faslodex Femara Tamoxifen
Please message me privately if you would like to participate or if you can think of anyone.Please know they follow the Market Research Society Code of Conduct, and everything will be kept confidential.
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kittykat, I am so with you on the daughter front. My 20 year old has been in tears many times after learning of this new primary. Not only are they invested in what happens to us, they are aware of what the implications are for them. I'm sorry that this occurred, I pray for the best for you, and that you remain seizure free. xoxox to you and she. Nikki
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Well, bought a few new items to add to my food repertoire. Added some instant noodles that were only 29 cents each which can combine with pretty much everything I eat, got some steel cut oats, using that to fill out my ground meat or sausage as well. We will see how that goes. I also notice my chair got somewhat damaged when one of my cat's claws was stuck in it, busted out the sewing kit and from a distance you cannot tell anything was wrong. Part of the chair is covered by a scratching post, thinking of adding a regular bedsheet in the same shade to cover up part of the chair as I already have a lovely blanket my SIL crocheted for me. I am lowsy with slip covers.
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I think I'm not able to escape a run of bad things happening. I got a call from my mothers nurse who comes and visits her weekly to check on her since she fell a few years ago and broke her arm. Since then hasn't been the same. Falling a lot. The nurse told me what's really going on. She is in end stage COPD and end stage renal failure, and her heart is starting to fail. My mother didn't want me worrying. The nurse said. But now she's bed ridden and is forced to enter a nursing home/hospice care facility. She lives in Mississippi, I don't travel ever. Because of my spine. I don't know how long we're talking. But it doesn't sound very good. I don't know what to do. Only my step father is out there and he is 80. He can't do too much. It's a mess!!!! Arrrrrggghhhh. Life can be sooooo shitty sometimes….. I'm so upset
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Thanks everyone for your kind words, I'll have Beck here tomorrow to break the news, not being allowed to drive is the worst, I've been driving since I was 16, hopefully after they treat it I'll get back behind the wheel. Golden's I hope you continue to recover well and Candy, I really do hope they can get those fevers under control. Mel, in your and your sister's pocket for good results from her scans, wishing everyone else going through a tough time the very best outcomes for whatever is going on with this crap disease.
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Oh Mel, so much going on at the same time, are there any younger relatives that can visit her between medical people if you cannot travel, I am so sorry this is going between your own issues, your sister's and now your mom, that is enough to stress beyond the max. I wish I could come and hug all of you in person, this is so rough. Healing thoughts and in everybody's pocket.
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Oh, mel, haven't you been through enough already?
Kittykat, will be thinking about you tomorrow when you talk to your daughter.
KBL, thanks for sharing the info.
mara, slipcovers are a pain to make. I've thought about it, but never actually tried. The neighbors would very probably hear some pretty strong language if I were to try.
Big hugs to all. I think we need them!
Carol
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KittyKat, I’ll be thinking about you today and am sending you hugs.
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Still sending healing thoughts to Kitty Kat, Goldens, Mel and Candy. You all need them, probably more of you will need them.
Decided to pull out my heated rack to dry clothes, takes maybe an hour after they are spun and so much gentler on clothes as well. Handwashed the clothes in the sink and can toss for 5 min no heat to get rid of any fur or whatever might be on there, doing cloths and towels in regular washer/dryer. Been a while since I used the heated rack, clothes are almost dry already. Nice thing is the heat is just closed in a tent and goes out the top. It is great. If it is cold, could use as a heater, also does not damage the clothes.
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I am making some mr noodles ramen type stuff, going to keep them in a container and add to meals a bit at a time I think. Just a different texture than normal rice and rotini.
Edited to add, final meal was 1/2 cup beans, a bit of the premade mr noodles and sprinkle of cheese. Heated 60 seconds, added microscopic amount of the seasoning that came in mr noodles package, very spicy but combined with steak seasoning, wheat bran and italian seasoning. Used a dollop of sour cream to cool things down. It was delicious, loved it and I like the noodles. I'll probably try to get 3 to 4 meals over the next couple of days since they are high calorie and are really good. Could add to eggs and beefless ground in a frypan, we will see. Just keeping refrigerated for now.
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Mel, That’s a lot to take in about your mom, all in one phone call. I can understand her not wanting to worry you. But would you have wanted to know sooner? In your pocket as you deal with what comes
Kitty, Sending you and your daughter strength as you share your update with her. I hope you can support each other.
I had my every 3 monthly CT this morning. I hope it’s good enough to continue the same chemo. I’d appreciate anyone who can hang out for pocket duty while I wait for results. They might show up later today or over the weekend on my portal. I have an appt with my MO on Monday. Feeling nervous!! 😳
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rosie24- in your pocket as you wait for CT results. Bringing Cinnabon minis
Mel- in yours as well as you have so much going on. Hugs to you. 💐
Kitty- sending strength your way for the talk with DD.
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kittykat- I’m so sorry you’re dealing with progression to the brain. I also worried about breaking the news to my children. Neither of them live close to me. My daughter (22) actually took the news better than my son (37). I think it’s because my daughter was 8 years old the first time I was diagnosed and has been there whenever I’ve received the devastating news of progression. We get knocked down and we figure out a way to get back up and adjust to new treatments so we can move forward. It was a tough but necessary lesson for her to learn about life. When we all get together, we plan fun activities and talk about normal things, because they are up to date about my cancer - so no need to dwell on it. I know it’s different for everyone, but this works for us. I hope it goes well for you and your daughter today.
Mel, Goldens, anyone else going through rough times, hang in there. Good vibes to everyone getting scans or waiting for results. I wish we could all get a much needed break from all the crap life throws our way.
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Rosie- in your pocket as well with homemade cheese biscuits waiting for scan results
Mel- I am also right along with you as you deal with everything you are going through
Kittykat- I do hope your difficult conversation with your daughter went as well as could be expected.
Waving hello to all !
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Rosie, Definitely in your pocket. I got good news and hoping you will get the same.
KittyKat, Hard conversion for both of you. Hugs.
Mel, Talk about no good news! Sending strength to all involved.
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Rosie, I am in your pocket for results, best of luck.
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Mel,
I agree with Mara (right? I think it was you) who said it’s time to call in the cavalry. People really do want to help. Can you find out who is out there who she considers her friend or someone she can trust? Who else in your family can take up some of the burden. I hope they are not looking to you to fix everything. Not fair. Of course my words start getting edgy when I think of any of you who is not getting the best care wherever you are. The last thing any of us need is more stress.
Please let me know if there is ANYTHING I can do to help. I can make phone calls or try to help with what is available from the state, etc. All of that can be done via the internet. I know I won’t be able to get far with getting her personal stuff, but again, there are a lot of higher level inquiries I can make.
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Laurie, yes it was me wondering about extra support out there for her mother. She is already dealing with her sister, having her mother injured and being moved, without much support is pulling Mel apart, I hope she can make some calls that will help with some of that.
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kitty - I’m so sorry about your spread of Mets. And now Mel’s dear momma. No breaks. The damn disease that keeps on taking and taking and taking. I’m heartbroken for all of us. A gentle hug to each and every one
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Kitty sending support for your purposeful conversation with your dd. With Mae and Mara you will be able to navigate a little easier. They know the ropes.
Mel so sorry to read about your mom. Maybe the American cancer in her neck of the woods has volunteers or referrals?
Rosie pocket duty for upcoming results.
Everyone going through tough times I hope things get better soon.
Boo-boo always good to see you.
Take care all
Tany
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Crawling out of lurking to say that I am here in support of all of you. There is so much sadness and so much scary stuff going on with many of you and it is heartbreaking. I am solidly in the pocket of all who need me and standing ready for those that come along and need me.
As someone with next to no support I want to also say that the way you all care for and love each other warms my heart. You are all truly there for the good, the bad, and the routine (i love hearing about Mara's day very much!). This is truly a special living room filled with special women.
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I am planning to get out and get a prescription at the pharmacy. Beautiful sunny weather here, taking the cane as well, more of a security blanket for me.
Breakfast will be one hashbrown precooked and cooled from the Breville, already have 1/2 cup beans, handful of mrnoodles, rest of the cooked hamburger cooked up a couple of days ago in the frypan, when ready, will add the hashbrown in and heat these all up. Skipped cheese as I think I am going to be full. Seasonings include steak, little of the spicy powder that came in the mrnoodles pack and that is about it, adding queso and sour cream as the binders. Next shopping trip, want to try to get stuff for 10.00 which sounds impossible, but I think it can be done since I do not need any more mayo and I eat canned foods and found the mr noodles. It will be another week or two before I need eggs again, got 30 at costco a week ago.
Only other things I am trying to keep up on are small chores and with two cats and tumbleweeds in the living room of fur, just going to keep up dusting as I can see it, whether small or large.
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Adding to the previous post regarding my meal, while the stuff is heating in the frypan, took out a bowl and put a spoonful of queso and spoonful of sour cream, added the seasonings which were the steak, tiny bit of the spicy seasoning and some italian. When I stirred it up, it was far too much to bind the food so just took about half and put the mixture in an airtight container until I use it again. Using up the bit of actual ground hamburger along with the hashbrown gave a very pleasant taste.
Big meal so will give half an hour before walking up to the pharmacy. Should take an hour round trip. May have lunch later and walk up to the grocery store. Cane used always when walking on my own.
Edited to add, my face is red, sweating a bit now that I am in the house but that is fine, face red but that will go away. Was never tired or short of breath so that is good, want to get to being more comfortable. I also discovered my purse pulls me a lot to one side so thinking when I don't need groceries, will just get a small knapsack to replace the purse, today, I shifted the purse behind me, no one can get in to the wallet. I also walked on the road on many streets to get steps. Have to really pay attention to wandering feet but no close calls which was nice.
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Lovely rain here today. We haven't had any since June so very welcome. It's knocking a lot of the smoke out of the air and hopefully helping knock down the fire which is causing it. I'm sure the people under evacuation warnings are happier.
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wren, I'm thankful for the rain you're getting!
Carol
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cm~ thank You and welcome To the living room. Your words are very kind and we definitely try to support one another. Hugs to you.
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Wrenn, I am very glad to hear there is raining, not just because you are enjoying but for the fact that it is helping with smoke and fires as you said. May it continue.
Still nice here. I am a crazy person though. The first walk to and from the pharmacy took an hour, sat around for maybe 30 mins and got a craving for the burger joint so instead of ordering on a delivery service, just went to the burger joint which is another hour there and back. Walked over 5 miles in those two walks, not fast and of course with a cane stopped for a few seconds here and there, sat on a bench as well for a moment and kept going. Pretty steady on my feet. I also put my purse in my knapsack so it would not pull me to one side and two straps on shoulders feels better than carrying the purse at the back. All in all 12721 steps for two separate trips. I was almost going to walk up to the grocery store but that would have added another 30 mins and thought I should just head home. Could not eat much lunch so got another bag and brought it home, will just add pieces of it to other meals for a couple days, no need to waste it. Guess I better drop the I'm gonna fall or bad balance, the cane helps a lot. I use when walking alone, if with Chris and Kelly, don't bother.
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Oh you guys! I am finishing catching up on about a dozen pages of posts and am just sending out hugs to all of you.
Mel - I don't have adequate words. I wish I had a magic wand to shake and fix it all for you. Here for support and all the pocket duty you need. My heart hurts for you.
Candy - I'm glad you are taking back control of things but I wish they had answers and a fix for your fevers.
KittyKat - Again, I don't have adequate words. I hate to hear of any progression and all I can offer is support and pocket duty to you also as you navigate the conversation with your daughter.
So many others here, struggling, I think about this group a lot throughout the week and pray for all of us that brighter days are ahead. Thank you to those who post the good news for us to cling to as we navigate this cancer life.
Not much to update here. I skipped my Faslodex injection this month but got the Xgeva and felt just as poorly. I really think that the radiation therapy I had in August has just set me back. I am struggling to get back to the functional level I was at in July before the treatment but I think it will take time and patience is not always something I am good at. Next weekend I will be driving up to Portland to stay with my best friend and her family over Halloween. I'll be up there for about 4 days. It will be the first stretch away from home and long drive I've taken probably since the Pandemic. I'm looking forward to it but given my struggles lately am a little nervous about the drive. It's about 4 hours north, so not the hardest road trip, but I do worry about my energy level. Today is rainy and cold. Fall showed up overnight here. We dropped 30 degrees in 24 hours! It looks to stay this way for the next week so it will make for a wet drive too. Even so, I'm excited to be getting out of town and seeing my friend and her new baby. We haven't seen each other in person in over a year.
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Oh Mel I'm so sorry to hear about your mum, I hope she can get some local support to help her. Beck and I had a good talk, tears but also a few laughs, got some legal stuff settled and she's going to bring Finn here to me seeing as though I'm not allowed to drive and I've had offers from everyone to take me wherever I need to go, I'm so lucky to have so many wonderful people around me. I've got another mri scheduled for the 1st of November with smaller slices to see exactly how many tumours there are and to see if targeted or whole brain radiation will be better for me. So for now I'm in a holding pattern unless something drastically changes. Not a fan of Halloween anymore as that was the day, 5yrs ago that I got the news that I had mbc, it's not as popular here and I've actually never had any kids knock on my door trick or treating. Take care everyone, be as well as you can.
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