My Husband, My Life, My Love, My Family, My Cancer
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Mara~I’m glad you’re feeling better than yesterday morning. I have horrible mornings. Afternoons and evenings after my long naps Headache. Achey groggy. Miserable. I’m thrilled because my hair dresser agreed to do my dh and my hair. She does it out of her home. So we have been quarantined and haven’t gone anywhere and neither have they. So we should be ok with masks and gloves. What a pain in the real end. Yuck! But I want my hair done this week if at all possible.
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Okay, folks, for info purposes -- I just had my "video visit" with the NP at Hopkins. I took my own vitals -- a nurse called me beforehand and checked my meds and I told her I had done my vitals, so she recorded them and was grateful that I had. The visit wasn't really any different from my normal visits, and in fact, I preferred it to having to drive 45 minutes up to Baltimore. Tomorrow, I do have to drive up there -- I had originally had an appointment for labs at 8:30 and my faslodex shots at 9:30 and they were supposed to be drive-ups (described in another posting). Now they've decided that it's "one and done" -- both things will be done just inside the lobby of the cancer building, leaving my car at the circle outside until I'm done. Anyway, technology works for some things but not for others, but so long as I'm stable, I'm happy to do it this way.
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Bevjen, good to hear that will work out for you. That is great.
Mel, glad to hear you can get your hair done. You and DH will look great I am sure and certainly sounds safe enough with PPE you will wear.
I do feel so much better. Been walking at home today, 5 mins walk and one min rest. Usually aim for half an hour of walking this way. Probably will skip outdoors, we have some snow and even had some thundersnow just now. Really cool. Had my daily chat with a very good phone friend as well which makes me cheerful. Only difference between today and other days is I forced myself on the treadmill first before doing anything else. Avoids getting tied up on more sedentary activities like my money making on earning sites for surveys or watching paid videos.I can make enough to pay for my groceries most of the time.
Hoping every one else is doing OK to day as well.
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BevJen~Why can’t all Visits be Like that? I could handle not having to go in. Video in how I’m feeling sounds good to me. I scanned in March, i guess in June I’ll blood work and XGeva. I’m wondering if things will be normaL. By then. I have a persnickety port that they must draw my labs from Because I have absolutely no veins left after all my AC and Abraxane Chemo... I cant imagine drive up blood work. Like we were saying the other day about what if it has to be given in the hind part. Like falsodex I believe. It was.
Mara~It’s cold again and rainy cloudy cloudy. Not chipper at all and my poor dh is so busy working from home. My entertainment is busy.......I don’t get hungry very much during the day. I wake up from my nap and I could eat cardboard. I’m that! Hungry. Enjoy your delicious sounding goodies ! Hugs to you.
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Hello all.
Mel- Great that you can get your hair cut. Sounds pretty safe with all of you being virus free and using PPE. Wish I could get mine cut. I usually go every 2 months and it has been 3 and counting. Split ends and layers all out of wack.
BevJen- Glad you enjoyed your virtual visit. I have had a phone call visit as I do not have video capabilities right now (ordered a Webcam online but out of stock). I go in next Monday for blood work, Port flush, shots and MO visit. We cancelled blood work last month. And the shots are 10 days late so we could schedule all in one visit this time.
Mara- I like that you posted about it snowing. I am a winter person. It is sunny here and in the low 60's. Supposed to rain the next 3 days.
I picked up my WalMart order today. Ordered 2 days ago. Couple of items out of stock, but that is ok. I had to wait 30 minutes at the pickup location. There was 1 girl working in that area and it was busy. I thanked her for working. Not much else going on here today.
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I think this whole crisis is going to push people towards telemedicine a lot faster than perhaps would have been done before. My MO called yesterday for our 'appointment' and it was a lot easier to deal with from home than trudging in and making an already long day longer at the hospital. He was late calling but no big deal, just picked up the phone in the flow of the work day. He has a deep voice and super posh accent that combined is very sexy; unfortunately he is really bad at small talk.
Signed contracts on the new place today so we are officially not homeless next week. Booked the cat taxi - the kids are travelling in style in a fancy specially outfitted van, door to door. I get to mask up, grab the hand sanitizer, and take public transport. With the boxes all over the living room its like Cat Gym downstairs and they are just loving it.
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I did stay in today as it was cold. The thundersnow was cool as well. I have eaten a lot, must have been the walking on the treadmill. Only added up to an hour or so but do find myself hungry. Had cereal with ground up bran, then 2nd meal was beans, cheese, queso and of course chips. The beans were red and kidney beans, seasoned with onion, garlic, taco seasoning and salt with a little flavacol buttery tasting salt. I like to sprinkle the cheese on the beans on a plate and microwave for 3 mins, makes the cheese nice and crunchy. Very yummy. Then a burger from the freezer. Supper was similar to the beans except took big handfuls of spinach, seasoned the spinach with same mentioned before and then shredded cheese, cooked up the same way. It was delicious.
Only other thing I did was look up another portable washing solution when my main machine is busy on blanket day. I saw the portable washers similar to mine went up almost 300 over what I paid just last year so I got a clip on agitator that clips to a bucket. Looks like it could fit the bill and very reasonably priced. I cannot justify spending 500 or more but I can justify 100 instead. Will come sometime in may. I am obsessed with laundry supplies right now.
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little insomnia going on Keep having this strange re occurring dream I’m on a cruise ship. I keep hearing the engine of the ship. It’s weird I don’t like cruising Weird what we dream. Hope everyone is sound alseep.
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Morning all.
Mel- I have vivid dreams, always have. Hope you are having fun on that cruise. LOL.
I went to bed exhausted last night--no reason, just that fatigue thing. Slept like usual--up to bathroom twice and toss/turn with aches and pains. Up this morning feeling tired still. Feels like it is going to be one of those blah days. Good nothing is going on. I think I will watch TV and just rest.
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Good Morning Candy and All,
I know what you mean, Candy. It’s starting to get really old staying in and doing the same thing day after day. I’m having the “blahs” too. I am getting cranky....my poor DH. He goes outside and weeds the garden to stay away from me. I have a 3-month break from all chemo and related drugs, and I’m so ready to go and do something fun. Nope. Nothing is open, so another day of doing a lot of nothing!
I wish I was good at crafts or knitting....I need to look for something to do. Any suggestions, I’m all ears!
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Boo- I am feeling better for the moment. What I meant about the blahs for me today is the fatigue/cancer blahs. I went to bed exhausted last night and awoke still feeling exhausted. I do that sometimes. The cancer fatigue. Watched show on TV and my sister came over unexpectedly. I stood on the porch at the top of the stairs and she stood on the lawn. We visited for a few minutes. I got my second wind. Even if we didn't have COVID, I am having one of those days where I just want to rest. Waves of the sick feeling with the extreme exhaustion. This is a day where I feel like a cancer patient.
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Candy, there must be something going around for us. I slept well, got up and exercised and still feel blah, even after two meals. Going to walk up to my burger joint to get some snack size burgers to stock up on. I am not feeling sad or even sick, just one of those days. Hoping fresh air perks me up a bit. Also, delivery is pricey because of the charge, tax and tip. I always give 30 per cent right now. Once we settle back to normal life, deliveries can go back to 20 percent. Drivers need to be given a bump during these times.
I should be encouraged because we have supposedly hit our peak in Ontario and overall, it could have been worse. There is some talk of a staged reopening of commerce. We will see. Just want to actually hug my family and see my two adult nephews as well.
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Do you guys ever feel, like, sick with your fatigue? Last night I was watching a show I wanted to see on TV and the fatigue hit and I actually feel sick. Like, nauseous and overwhelming tiredness. Last night wasn't the first time. Sometimes I will be busy around the house and BAM the fatigue. And other times, like last night, I actually feel nauseous with the fatigue.
How do you all feel with the fatigue??
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Candy, I have felt that way. Fatigue and nausea can go hand in hand. Nausea may be a symptom of simple fatigue or the cancer we deal with all the time. I have felt like that as recently as a couple of days ago. I took my nausea med and did my best to plow through the day. Hate feeling like that though. If am going to cry about something, it is usually when I feel like that.
I did go out to get some burgers to save on delivery. Round trip, it was around an hour and a half as I was slow going. Got there OK but when turned around and walking home, was really showing a lot of exertion in breath etc. Felt like a slog. My brain was telling me I'm so tired even though I should not be. Had to really change my thoughts around and just said, you will bang out this walk. Took rest breaks at intersections and told myself to bang it out. It made the last half of the trip home easier. Not sure what the difficulty was but it was one of those days and made it home without falling so that is a plus. Obviously need more long distance walking.
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Hello all,
Had PET scan this morning to see if the Erubulin is working. I have no idea what to expect. I also discovered last night that I have jaw bone breaking through my gums. I have been having jaw pain since November, so I'm guessing this confirms ONJ from the Denosimab. What the f**k? Like any of us needs more crap to happen. I will go to MO's office on Monday.
Gutted to hear about Gumdoctor. Praying she is comfortable. She has endured so much with such grace.
So good to read everyone's posts. To those with pain, blues, insomnia- sincerely hope all is resolved STAT. I can relate to the blues and the insomnia.
My family is hanging in there with the Covid ordeal. It helps for all of us to get outside. I went on a short bike ride this weekend and loved it. Also started tomato and zinnia seeds indoors.
Love to each and every one of you, Mary Jane
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Candy,
Yes, I have also felt that way before. In fact, it was just two days ago...started the shower and was about to get in when the fatigue hit and nausea with it. Very weird. I try to breathe through my nose (sounds weird, but it works) and the nausea usually goes away. Sorry you are feeling this way. Let’s hope tomorrow is better for both of us!
Mary Jane,
Are you serious? Your jaw is actually visible through the gum? OMG! Aren’t you in a lot of pain? I’m sending prayers your way immediately.
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Hi all
Mjhjan I hate to hear about that jaw bone scenario. Anything dental is so painful.
Mara that fatigue feeling is real. When it hits I have to sit or lay down. Ugh.Booboo seriously you breathe through the nose and it goes away? I’ll try that or anything.
Mel I never cruised so I only know about covid19 cruises recently in the news. Before that it always looked peaceful and fun. Did you ever try RSO hybrid? I take that before bed and I sleep soundly.
Candy the fatigue is weird when it hits. Sometimes I do have nausea a hot flash and noooo energy at times and then I have to sit or regroup or go to sleep. Do you use MM? My sleep since MBC is INSOMNIA city. I do use MM and ambien.
Hope you all have a good day
Tan
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Candy - pre-diagnosis all last summer I had fatigue but while I'd had increasing issues with fatigue since 2004, this was different. Like my insides were 'hot' in a way and I felt sick to my stomach a lot of the time. No vomiting, but a real unsettled feeling. I couldn't figure out what it was, and it only started with the acute back injury. I just remember complaining to my dad that I didn't feel really good with this latest back injury.
Now when I have fatigue I have a few light bouts of nausea if the fatigue is bad enough, but nothing like that hot gross feeling last summer. Usually if I take some ibuprofen that kinda calms things down.
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MJHJAN, I too am sorry you are having to deal with ONJ. I hope it is not causing severe pain for you. Glad to hear you got outside on the bike. That is always nice to do.
I was watching my soap opera when I got home after a burger lunch and missed half of it due to closing my eyes. Will have to watch later today. Glad I got outside though and will continue the walks no matter what. Feeling better too.
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Evening to all--6pm here.
I took an hour nap today. I don't usually take naps, but today I needed it. Windows open and cool breeze. Lawnmower going in the distance. And I reclined the recliner and napped. Felt good. That fatigue/nausea thing I posted about is weird. When it hits, there is nothing to do but lie down. The nausea is with the fatigue, does not start before or last after the fatigue is gone. I am glad I am not the only one that has experienced it.
MJHJAN- Praying for your PET results. Wow, bone coming thru the jaw !!! Ouch !!! So sorry.
Tanya- No I don't use MM. I fall asleep soon after going to bed--no issues with falling to sleep. I toss and turn a lot due to the back pain, though. Tanya- Don't you have a scan tomorrow the 23rd?
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Candy - my fatigue occurs in two ways. About midday I get super sleepy. Then I perk up a bit but by 5 PM my body is hurting from fatigue. Every.Single.Day. This is from exemestane. My legs ache, my hips hurt, my shins feel like they're on fire. I do not get nausea but I do get a feeling of gnawing in my stomach and some gagging and dry heaves at the end of the day too. (Sorry TMI) Right now, it is 7:30 and my eyes feel so heavy. Ugh.
MaryJane that sucks big time about your jaw. Dental stuff is awful.
Mel I hate that you have an allergy to Gabapentin. It's really helping with sleep. It takes me a few hours to get comfortable and for Advil or Tylenol to kick in so I'm sort of tossing and turning but then I sleep all night pretty well. I'm also pleasantly surprised that it helps me with anxiety Yesterday I went up to therapeutic dose of 300 MG 3 times a day. Each dose change seems to take about a week to start working. Have you tried Lyrica? It's supposed to be ike Gabapentin.
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Candy~ When that fatigue hits me I need to lay down that second or I’ll fall. I’d lay in a street if I had to. It come up sometimes so suddenly and depends on what I’m doing. I nap everyday. It makes me feel Stronger When I am doing the things I need to get done. I am the sleep Queen, last night was weird. Insomnia comes rare but when it does it rings in the band.
MJH~Hello sweet lovely woman Always such a pleasure to see you. A serious OG for this thread. I am always so pleased to see your name. I know you are always so busy. Riding a bike sounds wonderful ! I remember two Winters ago you skiing! Just be careful out there. Pop in again soon. Always wonder about my peeps.
Mara~ hello, hope you had a sunny day. And no snow
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Candy yes PET in the morning. Thanks for remembering.
Tanya
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pocket duty!!!! Armed with sweets and treats. Tanya hope you have big pockets. Hugs darlin
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Morning all--8:30am here.
Tanya- In your pocket for your scans today.
MJHJAN- In your pocket for your appointment today.
Thank you all for your posts explaining how the fatigue feels for you. I told a friend one time that I was fatigued and they said "I am tired too". I thought "No, you don't get it". I know you guys "Get it". And also I am comforted--maybe not the right word-- that you all feel like I do. Makes me feel that I am not weird. That my fatigue is not odd.
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Moomala~ allergic to lyrica as well. I’ve tried a lot of them. I’m taking amitriptyline. So far so good. Thanks for the suggestion. I’m glad it’s helping you. We need the meds we take to make a difference.
I’m really starting to worry about Mae 😕
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Candy,
Maybe it's the power of the mind, but last night I was extremely tired and fell asleep in my recliner. When I woke up and headed to my bedroom, I felt oddly nauseous. I didn't eat anything weird for dinner yesterday that could have given me nausea. This morning, I woke up still feeling pretty tired, and still slightly nauseous. So I guess I either internalized your feelings or I am also now seeing this as a side effect. Interesting.
To everyone with scans or appointments today, good luck. Thinking good thoughts.
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Dear Tanya,
Count me in for pocket duty. I am praying for excellent results, my friend.
Dear Moomala,
Maybe it’s time to tell your MO that you want to change drugs. I had the exact same issues with Exemestane. I got down to put my dogs leash on to go for a walk and couldn’t get back up because of severe muscle pain. I really don’t put up with side effects that are disabling. None of us should have to. I’m hoping you find a better drug that doesn’t cause you pain.
I’m glad you found Gabapentin. I’ve been on 600mg. per day for several years. I take it at night before bedtime, and it helps me to sleep. Thinking of you and hoping for better days ahead for all of us.
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Booboo YES!!! I'm okay most of the day but late afternoons are really bad and i'm toast for the rest of the day. MO doesn't offer me much on this but last week the NP in her practice told me that about half their patients on exemestane report these symptoms. Letrozole was nothing like this for me. Everyone's different I guess though. One of the ladies in my support group here also does not put up with SE's that impact her life so much and for her it was letrozole. She demanded off it and is waiting to hear what's next.
Mel amitryptiline is a great drug. I was on it about 30 years ago for sleep issues. If Gabapentin doesn't work well enough for this pain, amitryptiline is where I will go next.
Tanya, in your pocket this morning!
BevJen I hope your tummy feels better fast today!
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I am echoing Laurie from earlier, if there is a drug that is causing disabling SE, MO or someone needs to find a better solution. The meds should not be worse than the disease for you. Hope something better is offered.
I am also worried about not seeing Mae about and hoping for the best for her.
In everyone's pocket today.
I also believe it is easy to internalize similar symptoms and somehow get them too. Does not mean it is not happening for someone but sometimes our bodies have other plans for us to experience more of the same.
I woke up this morning feeling poorly, had a sore throat, really stuffy nose and bit of a cough. Took lots of advil and Tylenol at breakfast and decided to see how fast I could wash my bedding by doing it more efficiently. I am not feeling the walking today but noticed that the bedding must be a lot of work because I burned off first meal quickly and blood sugar dropped. Had beans and cheese, queso and chips crumbled and shaky hands are subsiding. I suppose because my portable washer does not spin in the drum, they are really heavy coming out, must have been like a strength training thing. I did cut the wash dry time in half by spinning blankets twice in my Panda spinner and too less time to get dry. After all the meds, I am feeling better now.
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