My Husband, My Life, My Love, My Family, My Cancer
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Candy~I feel since I’ve gotten cancer every single relationship I have had been effected by it. I hate it. Mae mentioned sex drive.....??? Come ladies and chime in. Is there such a thing after cancer. Here your hormones attack you like your prey. I have none, I could relate when she wrote that. I feel bad for my Dh. I just know it’s an imbalance inside of myself. He’s just wonderful. I just don’t want him to becoming. What distant ?! He’s such a good man. I adore him .
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Candy, I am also sorry to hear about the conversation with your friend. Those were callous things to say about compromised and elderly people and she really does not have her facts straight about covid if she thinks you will only die if you are elderly or compromised. Plenty of healthy people getting it and being hospitalized and also young people so she should not be careless or think she will be OK. You being cautious is more like to help you and more people should be more cautious.
My oven has been a mystery to me until doing some research. Now, it did have some plastic melted that building maintenance scraped off and that was likely the cause of the smoke before. I did find out from looking it up that a lot of new ovens, and mine was new, never used, need a burning in process, that there can be some smoke but that should dissipate. So the stink and smoke are not likely the oil or remaining plastic, but part of a breaking in process. Personally, I think this should have been done before I moved in but now that I know, I may not need all the chemicals. I'll just steam out the oven and racks periodically with my new steamer and clean the racks with my wire scraper. Not as much smoke happening today.
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Update and final thoughts on the oven. It was on 550 for an hour. Very little smoke, still a little stinky but not smoky at the end. Tomorrow morning will steam out the inside, racks were already scraped and steamed and I will finish with soap and water. I don't think I will need to use easy off and I will go from there.
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Candy, I am sorry that your friend was so thoughtless. I guess this disease has hardened me. I get comments from various people (hairdresser, etc.) who have no idea how to relate to me. I seldom get upset because I know they cannot possibly understand what it’s like to live everyday with MBC. Until you walk a mile in our shoes, it’s impossible to understand what it’s like to live with a terminal illness. Some people are supportive, some are standoffish, and some are downright rude. But that’s why Mel’s living room exists. It’s where I come when I need to be with others like me. I thank God for you all. Could not keep going without you!
I saw my MO on Tuesday, and my next treatment is Navelbine. I asked her if we could put Abraxane on the back burner to use later, and she said yes. I would like to hang on to the little bit of hair I finally have since my last round of Abraxane. Anyway, I’ll start Navelbine the week of Sept. 21st. Hoping it works. I asked her about immunotherapy drugs and she shook her head no. I am not a candidate for those drugs. Not sure why.
Love to all.
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It irritates me that more people are not told that if they don't know what to say or how to relate to a cancer patient, relate to us as they did pre cancer. Most of us are not going to tell our hairdresser, cashier or servers all about our disease, treat us as normal people and just cut our hair. If we start talking about it, active listening is just as good and does not always require a response, just a sense we are being listened too. That would go farther than conversation just filling a space where thoughtless things could be said.
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people can be dicks. Plain and simple. My motto is don’t say anything
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Mel - you and your daughter are twinsies!
So I will be first to chime in on sex drive. Lost mine at 36 when ovaries were removed as part of BC treatment. My hormone levels were extremely high and I continued to have periods during and after chemo. Oh sure, we engaged in activity and once we got going it was ok, but it was never on my mind or had any urges. Now, at 65, being on these damn drugs with all the side effects - I could become a nun.
My husband claims he understands, but he’s a gynecologist and I want to smack him upside the head when he casually mentions seeing patients in their 70’s and 80’s who are sexually active. 🤯🤬. He understands the fatigue and is very supportive, encouraging me to rest and taking care of dinner and getting home in time to help with the dogs. I guess the male response is stronger than the husband/partner response when it comes to sex -lol.
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Candy -
There are people out there that just don’t get the seriousness of the virus. And you can’t change their opinion or actions. That as why those of us who are compromised, we must be vigilant in our own care. As said before, you can’t fix stupid (in this case, ignorance).
Be well and careful!😊
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KBL- I don't know if my insurance has a website I can check for pre-certs. I just call them. They are nice over the phone and just let me know if the process has started or not, or appx how much longer before determination. Yesterday I messaged my MO nurse after I found out from the insurance company that they had not gotten the request yet for the pre-cert. I then think the MO office probably thinks I am stressing too much, just let them do their job. But I would hate to assume they have pre-cert and go get test, and then find out still pending or denied AFTER test done.
Mel- I feel like my life did a 180 since the cancer diagnosis. Nothing is the same--- relationships, finances, stressors. Nothing. Like I am living a different life. Cannot comment on sex drive--- I am not in a relationship.
Mara- I don't get my friends thoughts. She has lung issues already, has for years. But, I think, she thinks she will be ok. Or if not, oh well.
Boo- It is a lonely place to be when others cannot empathize about our situation. Yes, Mel's Living Room is wonderful. I don't know if I could survive without it. You have sarcoidosis right? That is an autoimmune condition right? I have Sjogrens and Rheumatoid arthritis, both autoimmune disorders. And my previous MO said I would not qualify for immunotherapy meds. I am going to ask new MO her thoughts. But that may be why your MO said No.
Another quiet day here. And hot.
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Candy,
re insurance stuff -- I am currently on Medicare with a supplemental Medicare policy. I generally do not check if things have been approved any longer, because I never see anyone or go to any hospitals that do not accept Medicare. (I still do check on drug stuff, because I don't want to get hit with a big infusion bill.)
But when I was on private insurance, and if either I or my husband had something big coming up, I would call the insurance company as well to check about coverage. I get it. This stemmed from one time when my husband had to have in and out surgery and we got a HUGE bill from the anesthesiologist assigned by the hospital to his surgery. Guess what? The anesthesiologist (and his practice group) oddly didn't take our insurance although the hospital advertised that it did (and his doctor did ). Learned that lesson. The next time one of us needed something done with anesthesia, I specifically called the hospital and said to make sure in scheduling that it was an anesthesiologist in our insurance plan.
As for your friends who don't get the pandemic thing, as Forest Gump said, stupid is as stupid does. I know it's hard to brush it off, but some people are idiots. You aren't going to change them.
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Your friend brushing off the pandemic is foolish. If she thinks it won't happen to her, she is foolish and acting like a teen who thinks it won't happen to them. If more people just wore their masks to contain their droplets, there would be less infectious material around. These protests against them or having temper tantrums make those people sound like toddlers. I still don't believe in a day of shopping like we used to have. I believe we should limit trips out more than we did before to minimize exposure. I don't know what phases of opening or gathering some of the US states are in because honestly I cannot follow it because US politics always becomes involved. I stay out of that since I am Canadian. Worry about my own politics. Wear a mask unless there is a mental/medical/age related issue not to, hands clean and stay home more often. Don't just go out to spend the whole day out. My personal opinion and I will leave it at that.
Not sure if I want to do to much today. Did 3 hours of walking yesterday throughout the day and steamed out my oven which does work. Burned in twice and it is fine, still scorch marks from the oil but nothing wrong with it. Just planning to do some laundry and try out steaming my blankets and tossing them in the dryer. The new steamer would make short work of any dust mites and save me about 6 hours work. We will see.
I am in anyone's pocket who needs it for tests or struggling with drug effects and hoping anyone who is well to have a good day.
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Candy,
Yes. I have Sarcoidosis. I am going to ask my MO next time why I am not a candidate. You may be right. Our autoimmune stuff could be the reason. Take care.
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Mara- Yes, the US has politicized all this rather than looking at the health aspects. Actually, I think the majority of our citizens are spoiled brats. "My rights" about mask wearing, good grief. I agree with you. Wear masks, hands clean, and stay inside away from crowds as much as you can. Prioritize when you NEED to get out and about. A day of shopping is not necessary. Limit possible exposure.
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I get really upset when people won't wear masks. They don't know who is at risk and who isn't. It's selfish behavior. I am no better then anyone else. Why should nt I wear a mask. I have respect for others lives. I thought it was mandated anyway? Coddling little babies. Maybe we were too good of parents. They say a shitty parent makes a smart child. They are forced to figure things out. Maybe I pampered too much. I mean my kids wear masks. I just meant the generation, we figured out our own stuff. No one told us what to do to get shit done. We fell and got up a few times on our way. They need to grow up seriously soon. It's time people !!!
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Candy, though wearing a mask is not quite as politicized, there are some asshats who still refuse to do it. Though the Ontario gov't has made it mandatory for masks inside buildings, the merchants are not expected to enforce it which is so stupid. Luckily I would say most people do wear masks where needed and I give the benefit of the doubt to others who do not have one on. I will always keep sanitizer on hand for myself both leaving and entering the building, lots of alcohol and hand sanitizer on hand. Still stocking up on one of each because when flu season starts, I do not doubt that there will be a run on those. I also have a really good steamer that I am going to try on my bags when I come home from the grocery store or takeout restaurant. Steam definitely removes anything.
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Mel, here in Canada, I do not notice the younger people without masks or putting up a fuss about it. It is older people who are causing the ruckus as if a strip of fabric is taking away their freedom of choice. They are required to wear pants out in public, hope they wear underwear too. Just boggles my mind. I admit when masks were made mandatory, I had a very difficult time breathing in them, but being the responsible person I am, I forced myself to walk in them to get the hang of wearing them. Now I can wear them. At the cancer clinic, we of course can remove them if eating or drinking and just put them straight back on, easy to do. Sometimes, I got REALLY sweaty and nose drippy. I can now steam and wash them all at the same time. I don't have trouble breathing unless I insert a filter in them.
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me too with the filter. That’s a no!
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Treatment day for me so I'm packing my bag. It's just taxol today so only a couple hours.
For medical appointments & places I know the 2m rule will be broken, I wear a fit tested n95 mask. I found my old one from when I was fitted in nursing school. Nursing students and nurses get n95 fitted annually & I brought the mask home for some reason instead of throwing it in the garbage as we usually do.
I have cloth masks I wear for outdoor things where I might be nearish people.
Mask wearing here seems to be fairly well accepted.
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Movie theater was the same, masks in the common areas, social distancing in the line, plenty of sanitizer as well. There were two seats between people as well, more than 6 feet apart. I only removed the mask in the theater when eating and drinking. They do help.
One thing I will be interested in to see the results of are how the FOCO party (homecoming) party works out at our own Western University. There are thousands that come out on the street and from other cities too. I think there could be a spike of covid coming as there are more people than police can corral. We will see.
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I live in Maryland, but we have a condo in SC too. The difference between Maryland and SC and people wearing masks or not is astounding. I rarely see someone in Maryland NOT wearing a mask (oddly, sometimes you even see people traveling in their own cars by themselves wearing masks!) But in SC, it's not the case. I just don't get it. It's not like it's such a horrible imposition to do it. We've all basically gotten used to it now, I think, and so WTH -- just grab the damn mask and put it on!!!
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People look at the mask as something that does not protect themselves. The anti-maskers don't believe that containing droplets from people will help infection rates. If people do not get with the program at least most of them, rates will never fall. The anti-maskers are as bad to me as anti-vaxers. No real science to back up claims. Oh well, keep myself clean and hope for the best is all I can do, hope that no one I care about, including you guys are affected by it. I am also skeptical that there will be a vaccine this year. I really can only see more treatments of symptoms being invented rather than vaccines.
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Hi all-waving hello
Candy chiming in about insensitive friend. Health care workers take care of everyone. It’s incredibly selfish to have the expectation that they come to work daily and wear masks to care for elderly and sick who will die anyway and someone who doesn’t wear a mask and cares about no ones family loved ones except maybe their own.
Mara and Mel your new avatars are gorgeous.
My grandchildren (the 12 year old twins) are attending school. They did online classes for two weeks and after missing too many classes due to bathroom breaks and shenanigans the school wants them in class for a month and then they’ll try again. My daughter said she was home but working and can’t supervise them while working. Deep sigh.
Booboo I’m glad your doctor is changing your meds to what you’d like to try I hope it works very well!
Candy I’m so happy that your new dosing schedule has made your ANC increase so nicely. I hope it all levels out and you get some life quality back. I’m looking forward to getting some honesty about vaccines, counts, clusters, etc. it’s taking an agonizingly long time. Maybe after the political follies.
Mae looks like your changing and getting rid of tamoxifen. Hopefully that will get your groove back.
My procedure went fine. Moth I’m waiting a few days to see if all the pain is gone. Last night I had no hip and back pain. I usually toss and turn adjust pillows and heating pads all night until I conk out.
If anyone remembers Penny78 her husband posted on ibrance thread that she passed away in August after a long run on ibrance.
Tanya
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Tanya- Happy your nerve burn procedure seems to have worked, so far. Hope the pain relief continues.
Yes, I read about Penny-78 in the Liver Met and Ibrance Threads. Another one of us gone. I have felt subdued this afternoon after reading about her passing. Makes the reality of our situation come to light. What is the name of the Thread where we add those that have passed? I wanted to submit Penny.
I have a message into MO. My CBC results popped up on the portal. Comment that I have "occasional Dohle bodies". I looked that up. Inflammation or infection? Something about neutropenia. Don't really understand. I have had a runny nose and watery eye the last few days. No fever. Hope nothing brewing.
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I will be in your pocket when your results are explained in detail Candy. I am quite glad to scan back and read you ANC count is good.
Tanya, thanks for the complement about my avatar. Good lighting for a selfie combined with a nice wig and makeup does a lot. I am very glad to hear the nerve burn is having the desired effect, may it ever continue. I can empathize with your daughter having to work and not having the where with all to be able to sit on top of these kids. It may do them some good to be in a physical school until they can take it more serious. I can empathize with kids even, because at least here, there has not been school since March. They are supposed to start Sept 14, some will be online, some will be in school.
I am sorry to hear about penny-78s passing as well. To be doing well for so long and have some phantom metastasis cause your liver to fail is so sad and tragic. My thoughts are with all of you here who cared, her husband, family and friends outside ot BCO as well.
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tomorrow I head to oncologist, blood work come back really good. Calcium. One tick low. Hate that. But markers are steady and I’m not expecting much other than to put on the ugly pink or green examinations thingy! He may speak of scanning. I haven’t scanned since March. I’m hoping he goes a year out this time, if not he will make me scan at the end of November. I don’t feel any differently. My tumor markers tell my story. They are re thankfully extremely low. I am thankful very. I just hate going to that office Such bad memories from that place. I hope I can keep kicking ass. It will be 5 years For me in January. So hard dealing with the fatigue. I always want to sleep. I took a fall early this morning. Lost my footing and sense of direction and over I went. Hit my flank on the bed frame. Feeling it today quite a bit. The Second I fell, there my DH was helping me up. I don’t know how he even knew I had fallen. But there he was. I love him!
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Mel, so sorry you had a fall, glad your DH was there to pick you up and heard you fall as well. Must have an excellent radar. Congrats on nearly 5 years. I have also hit my own 5 year mark this year too. Crazy to think about. I don't remember much of my life precancer either, just working. I also hear about the fatigue as well. Hard to fight against. Yesterday I walked for a couple of hours which is great, but I was sleepy the rest of the day and dropping off to sleep on the couch. I also felt tired when I went for my pirate cookies today, took an hour or more to and from, feeling the same tonight. I may have to go to bed early instead of napping.
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Hi everyone,
Glad to hear about good results for Moth (and others) and a new treatment plan for Mae...Sorry about your fall Micmel (and your pup...)! Hope the bruises heal quickly. Tanya - so glad you are feeling better! Such sad news about Penny...particularly scary because it didn't even show on her scans making it impossible to treat in time. REALLY hate this disease for all of us.
Had my six month bone and CT scans yesterday and the test results say still NEAD according to my Onc. It will be five years in November. I promised myself that if these scans were good I would start living my life "flat out" again. I want to push myself to be healthier, more productive and fearless. Cancer plus Covid has been hard on my self confidence lately. I've been hesitant to go outside the yard and near any other humans. Our town is now in the top five hot spots in the U.S.There is a title no one wants to hold. 25K college students in town are doing what they do and the anti-maskers continue to pretend it isn't here.
I admire all of you who have continued to live (somewhat) fearlessly over the past seven months. It's hard.
In your pockets for upcoming tests and scans ladies! May your candy dishes be filled with sea salt caramels that have no calories!
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Micmel, yikes, sorry about the fall, yay for the labs though. No masks yet but I’m sure they’ll be along anytime.
Iwrite, nice to see you, congrats on nead 🎉
Not much happening here, prepping dinner, cashew chicken, yum!
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iwrite, Congrats on NEAD. Both you Mel have had a long run on ibrance. I hope you both get many more years.
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I won't bang on about the silly antimaskers. I am so sorry it is scary to be outside where you are. I really think being outside where you can social distance, whether hiking or simply walking the neighbourhood could help as a morale booster. I can understand the concern given you are in a hotspot but indoor activities are the ones you have to watch. I cannot see that a walk should be an issue. I am happy to hear you are NEAD though. That is excellent news.
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