My Husband, My Life, My Love, My Family, My Cancer
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Wow. What a very nice thing to do, Lynne. So happy you are happy Mel. Warms the heart.
Mae, it’s so weird how some drugs don’t bother me at all (Xeloda) but others do the same to me with the nausea thing (my current chemo Navelbine). It has taken me almost a week to be able to eat a proper dinner since my last chemo a week ago. This is my off week, so I’m just now starting to like food again. I hope a dose reduction will do the trick for you.
Tanya, you are a bad girl. Now we are all craving those yummy treats!
Candy, hugs to you. We are here to support you girl.
Mara, blessings to you. I think your remembrance of your Mother was so sweet. Hope you can always smile when you think of her.
Hi to KBL, Shetland, Karen, and all of the others who make this thread so special.
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Thanks Laurie, I enjoyed observing her birthday. I did watch the video from her last birthday, few tears but also remembering how she was. The cake was really good too. I may have to keep one in my freezer going forward. Not an everyday but once a week treat or something.
Mel, I am happy that you are so happy for what Lynne gave you. Kind of how I felt when the masks arrived. I must say, I mostly wear those if I am honest. Get the most complements on them.
Mae still hoping the dose reduction helps you. Nothing worse than the nausea from not being able to eat without throwing up. You don't need that with everything you have already been through. Healing thoughts.
Tanya, again, those treats definitely look yummy. I eat stuff like that on the regular so that is why I walk so much.
Pretty gray here, not sure any walking I do will be outdoors, don't need groceries, I will wait until DB asks if I want to go out shopping. Still getting rid of this cold which has lifted quite a bit with the advil and buckleys complete which has acetominophen in it as well. I still feel better having not brought it to the cancer clinic around so many vulnerable even though social distancing is practiced. I am going to do laundry, 20 min walks on the treadmill between and after meals and that is about it. Nothing too exciting but sometimes excitement is not always good.
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Mara~ you are very considerate. Most people don't care about infecting others. They just do what they want to do. Astonished at how some won't wear masks Why!!?? Why??? Thank you for saying you wear the masks I sent you. That makes me smile. You sweet person you...
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People who can't wear a mask appall me. They are a bunch of narcissists. Can't do an easy thing for the health of themselves and OTHER PEOPLE.
Mara I think it's handy that dessert day came along and opened the door to remembering your Mom's birthday with the video. My Dad's (died 4/7/20) birthday is coming up in Dec. He had a fondness for striped rugby shirts-- wore them from the 70's onward-- and when I moved my Mom near me, I mailed one to each of my kids and my sister. I kept one for me as well. My idea is we have a zoom party and all put on our shirts for a surprise for my Mom.
My brother died when I was 20. A few years ago was the 30th anniversary of his death, and my sis and I had a 'memorial' gathering and invited all his old friends to it. They all came. It was so sweet having bunch of 50 year old men weeping about their high school friend. It made me happy that he had such good, loving friends during life. Anyway the weekend of the memorial one of my SB friends (who never met him) went and got a chocolate ice cream cone and emailed me to say she ate it while thinking of my brother's spirit. And that touched me SO MUCH.
Mae sorry to hear about the Xeloda. I am sure you have heard this from others but one of my pals is on it. HORRIBLE at first but then after a few adjustment, it has shifted into being a highly tolerable drug for her and effective too.
Mel: have you put on one of my 'masks' yet?
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Chemo day for me today so I'm packing up my bag. I wear my medical N95 which was fit tested for nursing school (but my weight has changed since so probably it's not the most ideal fit) into any medical appointments. I'm angry that the government has not ensured that there is an abundant supply of N95s. WTH, so many months in?! In health care settings here, they are under lock and key and the manager dispenses them only for certain procedures. Literally nurses have gone months on wards without even seeing an N95 box. We all keep laughing sadly about all the times when we used to just throw them out willy nilly after a single quick check in on a patient, and there were just boxes of them stacked everywhere, in different sizes.
When I go for walks, I keep a cloth mask around my neck. I can go 30 min without seeing a person so I don't wear it all the time during a walk. I don't like it when joggers blow by me - they sometimes are so fast I have no time to move and they usually only give me 1 m whereas my preference is more like 10m lol. get your huffing puffing air away from me!
mara - sorry to hear about the cold. So worrying because if we can get infected with a simple cold, we could get infected with covid. You always sound so very very careful so this is disheartening! I sometimes feel I've been sloppy so now I'm doubling down again.I've been having a bit more fatigue - just wanting to lie down more and had a couple naps on the long weekend. I don't know if it's that I'm doing more or just still recovering from the camping or what. My bloodwork is all good. Hgb is staying normal and albumin is still just 1 pt shy of normal.
hugs everyone!
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Santa ~I'm sorry about your brother and father. Mine passed may 2019. My other brother I don't speak to. It's been 17 years since I've seen him. I'm used to it. But how cute of an idea is that!!!?Ive used one of the masks the lime green one. My DH laughed at me. I made him time me.
It's windy here today. I'm going for a nap. Soon. Didn't sleep well last night. I don't like. That. !
Good to see you Moth!
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Santabarbarian, the zoom idea in the shirts is an incredible idea to do for her. I am glad that I celebrated Mom and enjoyed cake at the same time. Made it way less tough.
Mel, hope the nap helped. It does suck when you don't sleep well for sure, hope you sleep better tonight
Weather was rainy and cold, walked inside for an hour on the treadmill and did a little bit of elliptical. Surveys and laundry rounded out the kind of boring day but it was still a good day. At one point, my energy crashed and I did go to bed. Rested my eyes, not really sleeping and then got up and kept going.
Mae, hope you are doing better as well.
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Oh, by the way, the cold is going away. The medicine has pushed the symptoms back greatly and I am sure it won't be long until it is gone. Buckley's and advil have done their job. I did not believe it was covid, just a seasonal cold. I usually get one in August but it was later this year.
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Glad you’re feeling better Mara!
glad it was just a pesky coldnow we need to get our Mae up and feeling better on madam Xeloda. Lower doseage. I believe you will adjust and it will kick ass for you.
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Once again it’s 1240 and pop my eyes are open Again. Sleep alludes me tonight. My niece/sister who is 40 and just cannot keep her life together. She just randomly decides not to show up for tickets, or court dates from issues that involve shop lifting. I’m not very close with her, because she was one of the Benedict Arnolds that chose my x dh side of things when we divorced. Once what was a close family shattered when we divorced. I apparently was the glue that held that together, because now no one talks to anyone. She will never change her life and it caught up with her. She got pulled over and was taken into custody for a bench warrant. She has a small son aged 6. Poor child. All he wants is a normal mother. She has kidney failure from living in filth for so many years and what looks like drug use. Doc said kidneys only function 12% she needs dialysis weekly and is very sick with open sores on her skin. They are calling it a bacterial infection. She’s very sick, no where to live , hauled into jail puffy and swollen. It’s really heartbreaking to watch someone spiral. I guess that’s why I can’t sleep tonight. I can’t imagine being so
Sick and having to be in that place. She needs comfortable resting availability, she needs kidney attention. I hope they give her her medicine. Life is one big box of shit pieces, you never know if yours will have indigestible nuts in it or not. Nothing is easy. This isn’t the first time either, A son crying out for his mother. I told my sister, she’s too old to be dealing with this. Four kids, 3 extremely troubled. The youngest scholarship to Drexel. Engineering deans list. Things are so strange sometimes. Life is stressful for these younger kids. They have pressures I didn’t have. Dangers I didn’t have. Social pressures that weren’t there. Are now. I wouldn’t want to have children all over again omg not in this wicked wicked world (sometimes, not always). Good people get taken advantage of, no one wants to work for anything anymore. The society has gone looney tunes. Our youth is stressed out. Too early. These are our leaders in the future and some can’t even tie their shoes correctly. It’s so frustrating. Sorry I rambled! Eye yey yey it’s 1:00 am. Wide awake ! Ping!! Hope you’re all asleep! At least0 -
Damn - thought I had posted in here yesterday,guess the site ate my post!
Heading back to the hospital this morning to pick up drugs. This should have been yesterday, but I had to redo bloods because the dopey nurse on Tuesday requested the wrong ones (Urea and Liver??) when I needed CBC. Which I need every month, so I don't know what the problem was there. MO call (yet another one I haven't spoken to before) noted they couldn't release the pills without the counts etc etc (we all know the story). Xgeva was also not given and it was supposed to be. I was already angry about cancer/everything this month, so this was awesome to have to deal with too. At least with a mask and sunglasses on no one can tell when you've had a big angry cry. Its an hour and a half round trip and at least an hour for the pharmacy to pull the drugs, assuming there isn't a mess up there as well (there usually is).
Soon as I get home I just have to email my insurance guy and he has the letters ready to switch me to the new MO/hospital. Hopefully that will start to eliminate some of these timing issues and mixups.
I was doing really well until this month and now it just seems like its Stress City. I did take next week off, however, and have rededicated myself to the word 'no'.
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Hang in there Sondra, things will hopefully settle down for you soon. I’ve also been dealing with mixups/ delays and that ‘feeling forgotten about’ sensation. But going for the Faslodex shots yesterday- which were fine by the way - gave me a chance to catch up with my nurse practitioner as she gave the shots and we sorted a few things out, so feeling much better today.
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Another dreary day here. Even borderline chilly. I think fall has arrived. Going to figure out something to do today DH is painting the inside foyer. So I feel like I should be doing something. I think to myself what would I be doing. I guess that answer would be working. Some days I miss working and earning that living. I'm so thankful I can lay down when needed , which does happen a lot. There is no way I could work at all having this cancer and being on the meds i am on. It's DH vacation this week and he's painting I feel bad But boy does it look awesome
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Good afternoon ladies
The nerve ablation was a very temporary fix and I am back in back pain land. It started over the weekend and of course everywhere else hurts too hips, back, abdomen. The weariness never went away so theres that and a general sad mood. So the cupcakes were sugar well needed. There was a cannoli on top of one which I ate.
Karen I'm glad the faslodex was uneventful. The medicine works well for many.
Mae side effects suck. I hope you get to 0 side effects soon and can start eating again.
Mel that was nice to hear that Lynne gave you all that material. I usually go bring my husband a cold beverage or clean up some of his mess when he's fixing something. I know exactly how you feel/
KBL that caring bridge log sounds like a great idea.
Booboo Mara started it with dessert day. I caved quickly though. lol
Tanya
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Tanya, I am sorry to hear that you are having back pain again. I don't blame you for the sad mood, hard to feel happy when you are in such pain. I am glad you got some dessert and cannoli though. Both sound very good.
Mel, I don't like you having such trouble sleeping, wishing I could share some of my ability over to you and Mae, I do hope the dose reduction is helpful to minimize SE. Sondra, I am sorry things are so stressful right now, hoping it all calms down.
I decided to go out today, felt cooped up after the rain yesterday. Went out for an essentially free lunch at my usual burger joint, took the bus to another end of town where I lived before. I paid for lunch with surveys. I decided to visit dollar tree with a budget of 10.00. Our dollar tree has everything at 1.25 since cad is less than usd. Bought some more of the oxyclean powder, some powder detergent to mix with my tide and dish soap, living large I tell you. Walked probably half an hour to 40 mins round trip so that was not bad. It is cold and windy but sunny right now. I don't mind. Gotta say the powder laundry detergent smells so good from Dollar Tree, am surprised. Already added some to my powder mix.
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Hi all.
Mae- Sorry you are feeling bad with the Xeloda. Awful what we have to go thru sometimes with this $#@% cancer. Hopefully a lower dose will help you.
Mara- Glad your cold is doing better.
Karen- Glad the Faslodex shots were not too bad for you.
Tanya- Well I wish the nerve ablation would have worked longer. Now what?
I am tired of Covid !!!!! The weather is great here. My kind of weather. Nights in the 30's and 40's, and days in the 50's and 60's. Sunny today. Leaves changing. Chill in the air. I want to do things--- go shopping, go to a cookout, do things. I am tired of hiding in my house, fearful I may catch it. Our area is reporting multiple cases every day. And most residents are no-maskers.
I was supposed to get fitted for a new mastectomy prosthesis and new bras this summer (insurance allows for new prosthesis and bras yearly). I held off due to Covid. Today I said What the Heck and called and made appointment for next week. Covid is never going to end. I will always be high risk. I am tired of not doing anything/ getting anything I want or need. I am also going to make appointment with hairdresser for a haircut in a couple of weeks.
Others are going to church, living their lives. I am tired of hiding in my house, hair stringy, wearing sweatpants. I may even order online for a couple of new outfits.
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Candy, I’m so happy to hear you’re making plans. I would never try to tell people to go about their lives, but I’ve been to the hairdresser and stores and even to a restaurant for breakfast once and plan on going to dinner soon. I make sure to wash my hands and not touch my face, but what kind of living is it if we don’t live? My daughter and son-in-law are in a high-risk job, and I have not stopped seeing them and my grandson. I could never give them up, ever. Hopefully each time you go out your comfort level will rise.
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Tanya
I’m so sorry to hear that the ablation has stopped working so quickly. How frustrating. I’m finally scheduled for mine on the 28th. The pain is crazy. My hips have starting being painful and my Ortho wants me to start PT. Plus I’m having the pain in legs while I was on letrozole. I was switched to anastrozole in February and was doing fine until a month ago. Hoping to weed things out with the ablation as the pain doc said my back issues could also cause hip pain. Do you use heat or ice? I know ice is better for inflammation but heat feels so good....heating pad is my friend. Hang in there...will you see your pain doc anytime soon to assess what an be done
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I think covid fatigue is a real thing so I get it.
but I'm remaining in self isolation. Just to give support to anyone out there making that same choice
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Karen,
Glad that the shots went smoothly -- I only have had maybe 1-2 times in the last 16 months on faslodex where I had any problems at all -- and they were minimal (a little lump maybe 1-2 times, some minor itching a couple of times.)
I have found it to be an easier drug than the letrozole that I was on. Good luck, and happy that you are feeling more positive.
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KBL and moth and others--- Maybe I made my post sound too positive. I AM NOT FOREGOING THE RESTRICTIONS I HAVE DONE THE PAST 7 MONTHS. I am still going to watch church online. I am not going to restaurants. I am going to do shopping online with delivery or curbside pickup. I am staying out of crowds, and areas where masks and social distancing is not adhered to.
I was thinking-- the mastectomy product shopping is just me and the fitter only. Not a group in the fitting room. The hair cut would be me and the hairdresser in the room--- appointment as first client of the day with no other patrons around--- small locally owned shop, not a big room with lots of stations and people milling about. In both cases it is just me and the other person so unless that person is infected (my luck) then I would not be exposed.
I am second thinking my decisions though. Local news today says State had record number of positive Covid cases last 24 hours.
Sigh....
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I get my hair done. I go to cvs. To my dispensary. That’s about it. the doctor of course. I always wear a mask , wash your hands as much as you can and or have wipes with you, or hand sanitizer. Don’t touch your face. (Hard as hell to do) come and go quickly. That’s what I do. I go no where really. I miss going places. Even as little as it was dinner once a month. I miss it
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Right both Candy and Mel... what’s better for you, being terrified of going out or taking a risk just once because your mental health is suffering and you’re about to crack up?
Up to you both, but on balance I’d take the risk, just once, rather than be a basket case. Go and do something you enjoy! And then go and do another thing next week... take all the precautions but my God, don’t be a prisoner.
Sorry to preach, but had a bit of a week this week!
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Karen ~I think I've cracked up long ago. Lol. My oncologist was very specific with what he said. “Do not go anywhere you don't have to go" “it's going to be here for a long time" “MBC" patients are immediate high risk. That's all I really needed to hear for me. I only breathe on one lung. Complication from another surgery long ago. Pre cancer days. Scares me about the respiratory part of Covid. I do so much miss my sister. And my BFF. We haven't caved yet but with the holidays coming. It's starting to become thoughts. Now they are saying don't gather for thanksgiving. I can give up thanksgiving, but Christmas I cannot. This year has really sucked. Last I knew it was March and we heard of something going on in China. Now look it's October and we've basically lost all of spring all Of summer And now all of fall. Winter has Christmas. They'll probably say don't have that either.
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Micmel - my oncologist said the same and I have 2 good lungs. My GP same. They 'allowed' me to go camping because I swore up & down I'd wear my mask, keep away from people and they both agreed that outdoors activities with 2m separation was a low risk activity. Thanksgiving was easy to cut & we already know we will not be socializing at Christmas either. Zoom and facetime and that's it.
& can I just say, I know we all want to respect other people's choices so can we be careful about how we justify what we do? Or maybe even just don't justify it? Like we all know the arguments by now, don't we? I don't think we need justifications.
phrases like being a prisoner or what kind of life is it are just kind of judgy, kwim? I said I'm self isolating but I could just as easily have gone on to say words like reckless/endangering/irresponsible/killing grandma etc etc. which would have gotten someone's hackles up. I feel like those of who self isolate are being labelled as prisoners or overly fearful or not living life. It got MY hackles up.
Like if you're not HALO skydiving are you even living? If you're not free soloing (at type of climbing) what's the point of existing? If you haven't B.A.S.E. jumped this summer how are you even breathing? <--- those are jokes lol. I got to thinking of some dangerous things LOL
Let's keep it light & happy
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Candy now what indeed!??! Drugs I guess. I don’t want to put myself through another surgery. I think we can just try to figure out what feels ok to us and then do it. I spoke with my therapist about stage 4, which gives us a near future expiration date and then we try to do whatever we can and then Covid smacks us back into the living room. I haven’t had my hair done, shopped for anything except outdoor stuff. My grandson is coming to visit from NY (12) not in school. I don’t know how I’m NOT going to be with him. So I am trying to figure out some creative outings like top golf, beach, any other no touch suggestions?
Golden heat definitely feels better. I liked the pt but I had to drive myself and many times needed medication to get through it. Started then stopped the pt exercises at home. I’m actually a terrible patient at times.
Mara I think I’ll be walking again soon. I was waiting to see if I’d get relief from back pain but it looks like I’m stuck with it so I’ll have to pop pills and walk. It’s cooling off here in the morning and I live in suburbs so not many walkers inside the neighborhood.
Mel insomnia sucks. The MM doesn’t knock you out? I have to do bedtime rituals every sheep must be counted and also MM and ambien and body relaxation etc. bathroom runs also wake me. I hope you get some good zzzzs tonight.
Moth I get it. One of my students asked me what did I need with a nice car once? Yeah bc only a young teen would like to mash the pedal to the floor on open road with top down. I also would like to skip with a lollipop 🍭 through a green field!!!
Tanya
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I'm sorry if I made it sound like you need to go out and do things. That was not my intent to say to do that. I was just happy that you are going to get to do a few things that you want. I don't fault anyone for doing exactly as they want to do. I'm careful, but when I see some commercials that say “I haven't seen my grandchildren in six months," I might as well not be alive. My grandson is what keeps me going. I never thought I could love a human so much other than my daughter and husband. I've only seen my sister once in six months, and she lives right up the street from me. We talk frequently. Same with my sister-in-law. It just sucks all the way around
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I had quite a lot of trouble getting into this site today. Kept telling me there wasn't a secure connection. Very weird.
I spent from Monday to today trying to get my Ibrance reauthorized by my insurance company. I've never had to deal with this issue, and I shouldn't have to. I called numerous times to all entities involved, four different ones, doctor, doctor's pharmacy, the pharmacy where it's actually filled, and insurance company. The left hand doesn't know what the right hand is doing. I never got it solved, so I may have to skip another week through no fault of my own. I'm hoping my doc has a sample. I have an appointment on Monday, and someone is going to get an earful. We should not have to go through this and be the one to get it authorized. Someone dropped he ball. Why it has to be authorized yearly is beyond me. How about they authorize it until they're notified I'm gone or we have to change treatment.
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I am sorry KBL. It’s beyond frustrating when you’re dealing with life medicine, like we would dream one night hey let’s take ibrance just because! Red tape always.
Tanya~It does relax me yes. But I am a tough sale to fall asleep. Don’t know why. Always took me forever. Still does.
Moth~don’t know what I’m going to do about these holidays honestly. DH and I are in serious talks. I would like to see everyone. This Covid is just enough already. MBC is enough to deal with.
Hello Goldens. Welcome back. Bliss , Mae,Rosie,Simone,sunshine,Lee,Sondra,Mara,Candy, BooBoo,Karen,BevJen,Santa,lynne50’s,sandibeaches, hello to all of you. I am hoping for sleep tonight.
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In cheery xmas news, the Cdn channel that plays Hallmark movies (we can't get the actual Hallmark channel here except via satellite dish) put up their Christmas movie schedule. Yippee. I love Hallmark Christmas movies. I've got a printout of the schedule, now gotta get a calendar and checklist ready. First one is Oct 31.
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