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My Husband, My Life, My Love, My Family, My Cancer

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  • mara51506
    mara51506 Member Posts: 6,564
    edited July 22

    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.

  • cookie54
    cookie54 Member Posts: 873

    @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.

  • shanagirl
    shanagirl Member Posts: 461

    @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.(((💞)))

  • mara51506
    mara51506 Member Posts: 6,564

    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.

  • shanagirl
    shanagirl Member Posts: 461

    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.

    @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,

  • threetree
    threetree Member Posts: 1,833

    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.

  • shanagirl
    shanagirl Member Posts: 461

    @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.

  • threetree
    threetree Member Posts: 1,833

    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.

  • illimae
    illimae Member Posts: 5,745

    @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?

  • micmel
    micmel Member Posts: 10,060

    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.

  • irishlove
    irishlove Member Posts: 598

    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.

  • cookie54
    cookie54 Member Posts: 873

    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.

  • candy-678
    candy-678 Member Posts: 4,176

    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.

  • mara51506
    mara51506 Member Posts: 6,564

    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.

  • micmel
    micmel Member Posts: 10,060

    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.

  • shanagirl
    shanagirl Member Posts: 461
    edited July 24

    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.

  • mara51506
    mara51506 Member Posts: 6,564

    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.

  • mara51506
    mara51506 Member Posts: 6,564

    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.

  • gailmary
    gailmary Member Posts: 543

    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.

  • cookie54
    cookie54 Member Posts: 873

    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😊

  • mara51506
    mara51506 Member Posts: 6,564

    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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