My Husband, My Life, My Love, My Family, My Cancer
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Mel, it looks like he poses. If not you’re an awesome photographer. My cat was trying to get a photo of a third grader. I have one where he was caught by surprise
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Mel, sweet looking in both pictures and a little bit of dapper in the second photo post grooming.
I am unsure what I want to do today, got another throw blanket coming. Will get rid of the one huge fleece blanket and am able to properly wash the rest which is lovely. Panda spinner is great but for the everyday, the portable washer is great. Got a back up for 60.00, small so would be good for stuff I would hand wash. My hands do get sore when handwashing, arrives tomorrow. Since I have been eating through fridge and freezer mostly, realized that groceries are unnecessary at this point anyway.
Got my paper shredder, no idea what took so long to get one, can shred up the confidential mail which is good, flyers still go in recycle bin. I do have a massive amount of cardboard from Amazon as of late. Just collecting in a blue bag, will put out in recycle bin later.
Edit: The meal consisted of lentils, beans and beefless ground. Cheese sauce was the cheese packet from KD, put in 1/4 cup milk and tbsp of butter combined much as I could, heated for 1 min in microwave and added some shredded cheese. Meanwhile the lentils, beans and beefless ground put in a sprayed frypan, started on high, turned down, added the cheese sauce which I added taco seasoning to. Stirred around for a few minutes and plated. Added a bit of salt. No other ingredients need. I will simply say it was delicious, I loved it. The cheese sauce with the KD pack, milk and butter with that hit of taco seasoning was delicious as well, loved it a lot. I can use the KD pasta part with different flavours. This meal was overall nutritious and even had 1/4 cup of milk to drink, no dishes will be calling and need to complete first load of laundry.
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@intolight In your pocket for treatment today and I hope you get to enjoy a nice lunch.
Mara Glad you found an easier way to wash bulky items. They are so darn heavy especially when wet! Your persistence is always so admirable.
Shana Hope you slept better last night and find some energy today.
Goldens, Mel & Mae These pups are the best , so darn adorable! I love to see all the pets..keep the pics rolling.
Wishing all a peaceful day.
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@illimae those two little black faces are precious. They mus give you so much healing uplifting vibes. They remind me of my two little pug brothers🥰
@micmel I just love that photo of Theo. It;s so professional looking against the black background.🐾🩵
@threetree Hi girl, In your pocket Thursday for your. Zometa shot. Yep those shots are rough. I get the Fasoldex and Xgeva all at once too. Once they hit you a day later it lasts almost all month.!
@intolight ..Sending gentle hugs as you go for your shot.(((💞)))
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Shanagirl, you are so right. Can feed big big blankets a bit at a time and wash each section then spin in the big spinner. I like this for me.
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CONSTANT OVERWHELMING FATIQUE & LACK OF ENERGY
Today I showered, folded some wash fed the dogs, did some general straightening up. I just felt so tired I felt I wanted to give in to the feeling, lay down in on the bed with a blanket, started reading, and I just can’t keep my eyes open., I’m so frustrated that I feel like this all the time, I did a little painting yesterday but every day is always exhausting. Ladies, Is it normal to feel this way with MBC treatment? Please post your own experiences and feelings about this subject. I’m so tired it’s even tough focusing on typing.🥱😴🩵I’m so tired of being so tired all the time.
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Well, I woke this morning with extreme nausea and weakness, so much so that I didn't have energy enough to even brush my teeth. I tried for an hour but ended up calling the Infusion center and cancelling my appointment. Argh! They could only reschedule for tomorrow morning at 7:50 or next week — double Argh! So I am going to try to make it in the morning. Zometa and Faslodex have to be given at specific intervals so I can't just skip them. I will go out today somewhere and get my pre-labs done as it is too early tomorrow for pre-labs at the clinic. That means we need to take my DGD with us tomorrow as my DD will still be at work. Fortunately she works across the parking lot from the Infusion center (hospital) and gets off at 7:30 so we will exchange the kid. Complicated! I slept a few hours this morning and feel reasonable now so we will venture out soon. But I needed to eat so I will have to get fasting labs done at the end of the week for my PCP appointment Monday. And I thought I had it all worked out! Thank you everyone for the kind wishes but as we know we can't depend on things working out right.
@threetree I trust your appointment Thursday will work out better.
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CONSTANT OVERWHELMING FATIQUE & LACK OF ENERGYToday I showered, folded some wash fed the dogs, did some general straightening up. I just felt so tired I felt I wanted to give in to the feeling, lay down in on the bed with a blanket, started reading, and I just can’t keep my eyes open., I’m so frustrated that I feel like this all the time, I did a little painting yesterday but every day is always exhausting. Ladies, Is it normal to feel this way with MBC treatment? Please post your own experiences and feelings about this subject. I’m so tired it’s even tough focusing on typing.🥱😴🩵I’m so tired of being so tired all the time.@intolight yes that’ why I asked the above question to everyone. It just seems like every day it’s something like what you just described,
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Shana - You captured it all so well from my perspective. I can't really add much at all re my experience than what you have posted. I just hate it!
Intolight - So very sorry about your morning ordeal and not feeling up to going to your appointment. I hope you are feeling significantly better now. It's such a hassle to have to deal with all these drugs and then switching appointments around, etc. I sure wish they'd find a way to make it easier for all of us. So far, my appointment is still on track for Thursday, but I'm dreading it. Really hope you feel better soon and that your shots/infusion aren't too bad when you do get them. Hugs.
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@threetree Thank you for responding to my Question. I hope others here post and describe wha they are feeling regarding this overpowering fatique and lack of energy.
Ladies, Is it normal to feel this way with MBC treatment? Please post your own experiences and feelings about this subject. I’m so tired it’s even tough focusing on typing.🥱😴🩵
I’m so tired of being so tired all the time.4 -
Shana - I'd like to hear from others too, and will be very curious to see any responses. Thanks for posting about this; it's really important.
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I got lucky…I went to the hospital for labs and happened by the infusion office and they took me. So I am waiting for my Zometa happily since it means I won't have to get up at 6 tomorrow morning and go in. I still don't feel strong, but am better as long as I use a wheelchair. I tried to walk it but couldn't. The nausea has passed and I am only slightly dizzy...I'll take it!
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@shanagirl I had several days of extreme fatigue at the full dose of my current chemo and did eventually get a dose reduction because of it. Now I only have a few bad days, which are manageable. I think it’s normal on occasion but if it’s too much, talk to your MO. I didn’t need to suffer as long as I did. Also, if the problem isn’t your meds, could you have picked up a virus?
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Shanagirl- Oh my gosh YES!!!! The fatigue is my worst side effect, that and the on and off nausea, but the fatigue is the worst. I am a morning person, always have been, so I get up early and feel like I am on a time limit of what I want to get done around the house. I know that once the fatigue hits, I am worthless. And that is usually around 1-1:30pm. I HAVE to nap almost every day- even for a "cat" nap of 30-45minutes. Just to recharge the batteries. Sometimes I have trouble thinking, like a fog is descending over my brain. Trouble concentrating or coming up with words.
Edited to say- Mae was posting the same time as me. She mentioned having more fatigue until they lowered her dose of chemo. I have been on Lynparza for almost 3 years, with a dose reduction after the first 3 months, so I have been on the same dose for 2 1/2 years. The fatigue has been constant those 2 1/2 years. I have found that some days are less fatigued, and others more fatigued, with no rhyme or reason. Totally unpredictable when will be a "good" day and when will be a bad one. But I nap almost every day.
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I nap every single day at noon. I get up around 8 and have a cup of coffee. I’m ok until around noon. Then I’m useless. I’m pretty much useless anyway. My DH takes care of me and I am thankful for this wonderful man. Fatigue is awful and I mean even if only to go to fridge for some water and ice. Like walking through syrup. Getting to shower has become a planned event. It’s basically torture. Muscle aches back aches. Leg pain neuropathy in my feet and fingers. It’s not a pleasant thing to deal with. Each disease is different and effects us each differently, I see those commercials and I shake my head and think. I just don’t think so. There is no way I’m jogging. No way I’m going to be teaching a full class of kids. I do think I can sit on one place for maybe a few hours but then must move a lot during , then I have to lay down. Take pressure off my spine. Those commercials aren’t realistic. I have had family say Ive seen commercials for that. Those people were running with their dogs. I said yeah and they are paid actors not actual patients. It makes me mad and sad because no wonder Candy is getting denied if that’s how we are being perceived in the public eye for MBC. It’s way off.
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Good morning all. Yes fatigue murders me. I stay up until 2 or 3 a.m. and then sleep in until noon time. I have stopped feeling guilty about it. 45 yrs. of taking care of the house, family and worked many hours for 25 yrs., well I've earned it. However, I am OCD, so I make my bed, rubbing the wrinkles out. I put my clothes up that DD is laundering for me. I vacuum the areas we use daily. DD takes care of her side. It's so hot and muggy and close, plus mosqitoes outside, that I limit that time to watering potted plants. By the time I'm done, I'm exhausted. A kind of fatigue difficult to explain but I'll try anyway. It's a painful, hit the wall kind of fatigue. Recharging batteries sometimes just doesn't work. Muddle thru somehow. I make all my appts. in the afternoon to try to get some proper rest.
As for Covid, poor DH is really sick. 104 fever, can't talk and can't get out of bed. I keep track of his O2 levels and warned him if the fever doesn't break soon, he'll need further medical attention. It's hard to be in a house of 5 and keep isolated, but we are doing are best. Poor Pigeon and Minnie are missing their walks in the early morning. I can't walk them, so DH does and now that he's sick, I feel bad for them.
Last scan showed pathological fracture on the L1. It's very painful and frankly I know when it happened. I was bending over to reload the bird feeders. It runs pain down backside, buttocks, top of legs and in the private areas. Will talk to MO about returning to RO for treatment. Meantime, I'm being careful not to lift anything over a kleenex and to stifle my coughs.
I loved seeing all the pups having the best life. I miss the days of our rescuing. At our most limit, we had 7 dogs and 5 cats. Lived in the mountains, huge fenced yard and the cats use to follow me on trail blazing. They had their own cat condo DS built that gave them access to the outside and inside. I miss my babies. In pockets for all your needs.
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Irish I'm so sorry to hear that DH is so ill with covid. That's quite a fever for an adult, glad you have a close eye on him. I will pray the fever breaks today and he starts to feel better each day. Sheesh a fracture at L1, that's terrible and yes painful too!Frustrating you trying to keep moving and doing simple everyday things but wind up with a fracture. Our bodies have taken a beating from treatment and still do, awful. I always have admired your strength and attitude. Sending prayers and strength for you, Dh and family .
I loved the description of your mountain life it sounds like it was wonderful. You have a big heart and gave/give all your animals a great home.
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Also, it is the mental acuity. I used to be able to multi-task- at work I could talk to a co-worker, answer a phone, and do a task, all at once. Now, I find that if I am working on something I have to give it 100% of my concentration. Like concentrating is hard work. I watch Jeopardy and I may know the answer, but I am slow to respond. And sometimes it really is like a mental fog rolling in. I can feel the beginnings of it, and I rush to finish my task before it takes over.
Sometimes I wonder if it is the lack of hormones, since we shut down our hormones when we are on our treatments for HR+ MBC. Like we are speeding up the aging process. But, also, most of our targeted therapies have fatigue as a side effect too. Lynparza does.
Like I said before, fatigue is subjective. There is no test for fatigue like a lab value or a scan. They cannot "see" our level of fatigue. So when we tell others of our fatigue, they can choose to believe us or not. They do not really know what we are feeling.
It makes for a lonely life.
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Shanagirl, I am always exhausted, I have also called in for appointments due to exhaustion. I am adding a marching exercise to Leslie Sansone, will use two canes for balance, the pace will work me out quite a bit. Sometimes it brings up the energy. If I am super tired and want to move, do my exercise in bed both for balance and movement. I nap as needed as well. I think that is why I try to do different food or housework things. Keep my mind occupied.
Getting a silly purchase but I do not care, was 60 bucks and did not buy groceries the past couple weeks. I bought a really small portable washer, saves my hands from handwashing, the detergent bothers my skin but I figure it is good to have if everyhing is busy on blanket day to get that done. I also received another throw blanket which is nice, easy to keep warm, even made the bed. Debating giving the blue large fleece blanket a try the new way I do blankets on Sat or Sun, those are the bedding wash days.
Not sure about food today, I loved the cheese sauce made with the KD and taco seasoning so that will happen again soon, keep the KD noodles for other meals. Have to open up some beans. I was also watching you tube and though I am not keto, I saw a number of interesting bread ideas, even a cottage cheese bread that I will be checking out. Today will be simple, planning meat pies, need to open more beans and having eggs later, may make a fried rice with cheese shreds, beans and garlic heated in the frypan. I'll see what my stomach wants.
I am hoping everyone has a good day, in pockets for everyone including myself, getting boxes from amazon broken down, when I do not order off Walmart, I do some pantry orders off Amazon and those usually arrive in a lot of boxes. Also need to get to shredding some documents as well.
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Irish~ I really hope hubby improves soon. I’d keep an eye on that fever issue. That’s hard on an adult for periods of time. I really hope that it will break and he will start feeling better. Must be a heck of a strand. I was in bed for a week but had no fever. I’m thinking of you guys. Alternate Tylenol and acetaminophen to try to lower the fever. Everything just seems so difficult for us.
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EVERYONE. Thank you for adding your own personal experiences with fatique. I needed to hear if I’m the only one o some kind of hypochondriac , or something like that… You all nailed it.
@irishlove Everthing you mentioned is what I go thru. The overwhelming fatique is the worst, Even as much as feeling like murder. Like you I try to get some vacuuming in every day and like you, even watering some pots outside is exhausting. And you have described it exactly…”a painful hit the wall type of exhaustion,” You really nailed it. Thank you for sharing you own issues with exhaustion.
@candy-678 Oh wow, I relate so much about being a morning person and trying to get in as much as possible before the fatique sets in with the with the feeling of brain fog setting in and having to nap just to recharge. The fatique and the nausea too…..🩵
@micmel I my goodness yes, by Noon I’m ready for a nap.You have described to a T. I don’t know how I would get thru a day without my wonderful DH who is such a caretaker to me and really is committed to protecting me. Just getting me drinks or ice pops so I don’t have to go back and forth up and down the stairs to the refrigerator. And yes I ‘ve been telling him how exhausting it is just to shower and wash my hair.The pain in my spine does me in all the time. I’m sitting here typing and feeling so sleepy right now.Like you, I can’t sit very long because I need to lie down and take the pressure off my spine and seat bones. I tell him I need to get horizontal.
@mara51506 I admire you for all you accomplish in a day feeling your exhaustion., I just can’t even imagine marching or exercising to give me energy. at this point in my life any type of physical therapy to exercise is just something that would tire me out more and make me feel sore and achy combined with the exhaustion.
@illimae I think that for me, the reduction of a Medication did not improve my fatique at all. It’s the cancer in my bones and the other injections I think that contribute to my own exhaustion.
Thank you all so much for sharing your own personal struggles with fatique.
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@irishlove I am so sorry to read of your DH's Covid. I pray his fever breaks now and that he can heal. I also pray for your pain and the healing of your fracture. Wow, so much pain and fatigue going on for you.
Wow, You all do so much. It takes me a couple of hours in the morning to be able to work through the fatigue and do anything. If I am having a good day I may dust a little, but I can't vacuum. The Roomba does most of it and my DH gets the corners. If my day continues well I may do dishes and fix lunch, and if I am really good I can cook dinner, but that's about it. The fatigue is too great after that to clean up. Mel you are right that a shower is a major production. Yesterday I was so bad I couldn't even brush my teeth, but thankfully improved a mite, but I had to take a nap after. I know the next few days I will be down again with SEs from Faslodex and Zometa so I am prepping for it. This morning isn't too bad yet. My DH goes to the gym every morning and if I am doing well I fix my own breakfast while he is gone. Mara, you inspire me to cook better…My plan today is to work on my latest crochet project and maybe work a little on the notebook I am trying to prepare. It is hard. Every time the nurse asks me if I am depressed I want to say OF COURSE but I usually don't. I scared my DH so badly yesterday that he put me in a wheelchair and wheeled me into the Infusion center and stayed with me the whole time. That is unusual for him as he usually just waits in the car. Even the nurses noticed it and said something.
Praying for a better day for us all especially for those of us who are struggling a little from the smoke from all the fires.
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So many have husbands/others to help- Shanagirl, Mel, Intolight. I live alone, as does Mara. I pace myself, but it all falls on me- meal prep, laundry, housework, all of it. I cannot afford a maid or someone to come in and do things. So I just do on my own. What choice do I have.
Intolight- When the nurse asks me if I am depressed, I say OF COURSE. But I follow up with No I am not suicidal. Good grief, we have MBC, who wouldn't be depressed.
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Candy, I am with you, pacing ourselves is all we can do. For example, I know I cannot handle the heat, have not tried to walk outside, if I need to go somewhere, Paratransit is the way. Do bit of housework at a time an a quick vacuum and dust to my small apartment. The only chore I really enjoy now is laundry.
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Got my 60.00 portable washer, spins OK, cannot overload. It is a bit wobbly so put a yoga mat piece I cut to steady it a bit, draining in the bathroom sink. I will see just how often that is used, mostly on blanket or clothing wash day but will not complain about it. It was cheap and works as I want it to. So far I give it 7.5 out of 10. It did come with a spinner that goes inside but I will just wring it out and spin in the bigger spinner. Did I need this no but I did want it. Will fold down so I can store in the linen closet.
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Oh Candy, I hate that question. Are you depressed? But of course I get mad and let them figure it out. They have no clue why all the prescriptions.
I'll try to remember and politely/cheerfully answer 'Of course, who wouldn't be."
Cancer aside there's tons of shit going on in this world and I only see it getting worse.
It's raining! I love rain.
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Mara Glad you treated yourself to the portable washer! You work so hard and your hands certainly deserve a break too. Enjoy your new gadget😊
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So today I felt overpowering tiredness, and ended up closing my eyes and fell asleep…ALL DAY😴.
@irishlove You and your DH are in my thoughts and prayers. I hope that fever breaks soon. The fever is showing his immune system is fighting that horrible Covid. Fever is exhausting for adults. .keep him hydrated and give him probiotics. I’m so sorry for the pain you are both dealing with. I will say some breath prayers for you both tonight and tomorrow.🙏💞I also am praying for better less painful and more energy and good days for the rest of us.🩵
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Wishing all a better day tomorrow. Cute dog pictures. I was able to escape at least some of the smoke and miserable 105+ heat to sleep in my hammock, pick some huckleberries and sit in the creek. Back home now and the thick smoke is making everyone sick. My poor husband works outside...I water the garden and run back inside
I've had a little less fatigue after stopping Verzenio, Faslodex and radiation finished. I've felt kind of in overdrive trying to do a bunch of stuff before I'm crashed again, or whatever next scan does. I can't get the sores on my lips to heal from the new med everolimus though.... I use the dexamethasone rinse and not getting much worse but not going away either 2+ weeks.
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Today finds me doing more laundry, in regular washer today. I do love the portable washer but not needed right now. Filled up softener bottle. I use 50 percent vinegar, 50 percent water for 2L and another 200 of the actual softener for the scent, softens clothes without the feeling of softener sticking to them. Want to wear the capris in there.
I have Herceptin which is fine with me, pickup at 1100, might bring an umbrella since it is supposed to rain today, that is fine. Will have a simple breakfast of eggs and hashbrowns, will cook up hashbrowns in the breville and spray a plate and microwave eggs. Should eat by 900 am as will be putting some make up on for my trip out.
I hope everyone has a good day, in pockets as needed. In my own pocket to not whine about how tired I am, want to replace the tired thought with I'll be glad when the Herceptin is over. Had weird dreams that woke me so sleep was not as deep as usual, what I got was OK when I was asleep.
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