My Husband, My Life, My Love, My Family, My Cancer
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sondraf, only you know how mych you can tolerate. I didn't do well on Xeloda and but I am still on fulvestrant. Just got my shots yesterday and am really sore today. Sometimes are better than others. Stayed on Fulvestrant even when I switched to Verzenio.
Thought I would run errands with my DD today since my DH is out of town. Thought it would be ok since I did my usual bathroom thing this morning. Thought I was clear for the rest of the day. Even took an Imodium just in case. Was at Pennys—not good. Lost another pair of undies. Gotta learn to just wear depends whenever I go out lol. The outside world has no idea why we tote large purses…
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Hi all. I hope you are having a good weekend. @sondraf I'm on Eliquis, Verzenio, Faslodex, goserelin, not sure which one to blame the most for the fatigue. Sometimes I can ride my bike, do some garden work and other times I have trouble standing up. It's very frustrating. I've had a rough couple weeks after Faslodex shots and then scans. Things are stable with nothing new this time, less lighting up of known bone Mets. Why do I keep feeling worse then? Everything feels heavy. I'm trying to catch an energy wave to make apple crisp. Yesterday I made a pot roast. Anyway husband's family is coming to eat. He helps but he can't make pie...
Hugs to all.
Edit: Heck with it. I'm too tired. Someone can just get store pie.
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Emac, I’d probably wait until the next scans, then decide. Happy to hear about stable Brain Mets though, they’re such a pain in the butt.
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Emac, I’m glad the treatment seems to be working. I’d be reluctant to stop the Taxol, too. I mean, if it’w working and the SEs aren’t horrible…
Sondra, I’m sorry you’re having issues. I’ve been off my Ibrance for several months and am only taking Arimidex.
Mara, when is the tech person supposed to come?
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That’s what I want to do sunshine. Just take the hormonal as well. I’m going to push for at least a break
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My MO dropped ibrance 5 yrs ago. Been on faslodex alone. He said he could always add it back if tumor markers went up.
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Hi sondraf, I am on apixaban, forever! I did 6 months on a high dose, before it was dropped to a lower maintenance dose. I do get fatigued but I think that is due to chemo. I have not had muscle weakness although my fitness levels have dropped over the year. it is very difficult to blame apixaban, it could be age related or chemo or a mix. A chat with a medic sounds in order. I hope they can find the cause of your fatigue and weakness.
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Emac, I think I would make the same decision to stay on the taxol. As long as you feel okay and can tolerate it. Given how lousy you were feeling with shortness of breath and needing oxygen not that long ago, it seems like it's helping. And yes, it may be too soon to tell about the piqray, but can you go back on that once you're done with the taxol treatments?
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Tech person came and installed the new modem. It works very well and no dropouts, quick speeds and that is all I can ask for. It will be just over 50 per month for two years then go up to 109. My old internet was74.65 so I plan to take any extra I am saving from new 2 year price and have some extra to go toward the eventual increase. For now, I am happy with the speed, no crashes and not slow at all. The fellow was nice, he did say would work better on dedicated outlet, but accepted my answer as to why that could not be. May also use some of my GIC earnings to off set price.
I am working on laundry, lots of cloths and later pants and shirt. Going to see about best way to get up to mailbox, they put one closer to my house but still in the construction zone. DB says don't bother checking, think that is a foolish idea, been almost 4 weeks. We will see when, it is not hot today.
Having a mix of rice, 1/4 beans, cheese, wheat bran and egg. Chop beans, cheese and wheat bran, add egg and run in the chopper. In frypan, I take either a spray of canola oil or sometimes butter, heat to high, add rice, the bean/egg mixture and turn down to medium, only takes a minute or so and I usually like the veggie seasoning, 1 tsp of that with 1 tsp of steak seasoning. Add little mayo as well, really good mix.
Edited to add that tonight will be a pancake bread. I am still not good at drinking milk so will add some choc milk, some cheese, egg, bean, bran hashbrown that is chopped up after a precook. Still cannot detect chocolate taste in the mix. Try to use small portions of each so it is not huge. Savoury as well, I enjoy it more than as a sweet pancake. If I need maple taste, add small amount to recipe. Syrup is too sweet.
Hoping people have a good Sunday, for those who need it am in your pocket as well. In my own pocket as well. Feeling like the whole brain deteriorating should be set aside by family until proven. DB and SIL both treat me like this is inevitable that I will develop dementia, I need proof in the form of an MRiI and will treat myself accordingly. Work on exercise and nutrition plus keeping track of the ways I make a little money is major multitasking that cannot help but encourage pathways to form if they are deteriorating. Not going to cause an argument about it but it can be frustrating at times. Even if there is damage, sleep, food and exercise will certainly keep brain active so even if something is found, dementia is not a foregone conclusion. I do my best to show I am still strong but it is not believed. Frustrating so will do things for myself without announcing it. DB loves me and I will not cause an argument as said, not worth it to damage a relationship, SIL took the possibilities given and put them right to the brain instead of considering my aging, being on drugs 8 years and menopause. Oh well, will keep this to myself and here, keep life easier and less stressful for me.
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It’s good to hear some of you have been off Ibrance and are still doing OK. I worry about progression, but my MO did say she wanted to see me in six weeks instead of the usual 12 weeks and to get labs before I see her. I have my routine CT and bone scans scheduled for November.
Pulmonologist tomorrow, C5 spine MRI on Friday, another EEG the Thursday after that. My cough is better, but now I have rib pain. I’m hoping it’s just a pulled muscle. I’m wondering if I should ask the pulmonologist for a chest x-ray. Would that show if I cracked a rib?
Mara, yay for the new modem. I found that when our Internet Service Provider raised their rates after the “promotional period” I was able to call them and negotiate another “promotional rate.” I’m so happy you were able to get it fixed and hopefully to have no more crashes.
I like to play games on my phone. They say (whoever “they” are) that it will keep my brain active. I like Sudoku, Flow Free, Mahjong and several others. I downloaded the NYT Games app and have started play Wordle. I like jigsaw puzzles, too. I think I paid for the ad-free version for one of the games. DH laughs at me with the Flow Free game. My current streak is 2,366 days. I know, I’m weird. I even managed to play while I was in the hospital with COVID.
Waving hi to everyone.
Carol
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Good afternoon ladies. Hope everyone is having a fine day. I caught up on postings and wanting to send support to everyone.
Saw GP Fri. He spends a great deal of time with his patients and listens. He upped the Zoloft slightly, and said yes to Valium in afternoon when I get panic attacks. I decided against opening my portal with spinal tap results because I wasn't sure what he could really do with the information. Today I got brave and with husband by my side, I opened it. Good news: no paraneo plastic syndrome. Bad news: Polynuclear cells % of central spinal fluid is 100.0 HIGH. Normal range below 0.0%? One place said 0 another higher amounts. Hmm. Don't understand what this means. Tried looking it up and I'm confused. Anyone?? I'll try cure-ious over on clinical trials.
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I tried looking up for you but could not find anything clear cut, in your pocket none the less sending healing thoughts your way.
Well, weird trip out to check for mail. Had an almost panic attack, was shaking a bit, did a bit of the relaxing breath and ate 1/2 granola bar and drank water. Out I went, I did well on the bumpy dirt road even though I do not love it. Finally got to the mail box, checked my module and slot, keys don't work. Guessing I do not qualify to receive mail anymore. Bit frustrating that no mail happy bumpy road is passable, no more staying at home. Will call post office to complain and request new keys tomorrow. Best day to check for it where the box is now is Sunday, not much traffic. I did see a sign that seems to indicate the street work being done sometime November, slowly but surely getting there and I will be glad. Snow will be the next challenge but hopefully not right away.
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Sunshine, I will definitely call to haggle after the lower price goes up, Still saving in the eventuality any as that would just be smart. The upgraded modem is similar to a modem I had at my condo. It was quite reliable as well. Love I can stream my cooking vids that I get paid for by watching the ads they play. Of course I don't sit glued to the TV but I was unable to do that without the wifi. Happy anyway.
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Hi ladies, checking in to say Hi. That’s about all. I’m very tired today. It’s hot out too. So I’m not going out. This weekend was not so great. Friday all day the big D and nausea too. So I decided not to take my Verzenio that night and next morning because I had an annual family party I had to attend yesterday.. so I spent the entire morning with Big D then took 2 Imodium and went to the party. Felt obligated but today I’m just exhausted. Also breakfast then the big D again.. so I’m going to rest up today for my 4 week follow up with my oncologist tomorrow and my injections. @micmel , i think the advice from @weninwi is excellent and hope you get relief soon. 💗
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Shanagirl, in your pocket for the follow up with onc.
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Went out for a walk yesterday and was only a few yards into it, when I fell flat own on the cement and broke my left humerus. What an ordeal to say the least. I'd gotten distracted looking at a super cute toddler girl who was being held by her mother, just a few feet ahead of me. The little girl was facing me over her mother's shoulder and she and I were waving and smiling at each other. I was itching to really get out there and walk, so started to pass them on the right. In the process hit the front of my right foot on sprinkler head in planter area in the sidewalk and went straight down. The mother initially thought she'd bumped me and was real apologetic, but I told her it was the sprinkler head. she kindly helped me up. but then I thought I was going to pass out (super scary feeling), so we walked to some stairs together where I sat down. She asked if there was anyone she wanted me to call and I told her I didn't want to do the 911 thing and gave her a friend's number. Still felt like I was going to pass out so told her I guess I'd have to do 911 afterall. She couldn't reach my friend anyway. Fireman came and couldn't even get a blood pressure until they laid me on my back for a minute or two, then they finally got a normal bp. they told me that in a situation like that, heart rate shoots sky high and bp drops and produces the very real feeling that you're about pass out. Couldn't move left arm at all. Ambulance came and said it wasn't an 'emergency" per se and that if I could get a hold of my friend, which I did, and she drove me to hosp, i could save the huge bill that medicare doesn't cover. Long story short, spent afternoon at hosp getting x-rays, a sling, and prescript for pain meds. Got home around 5 pm and then really started to realize how I can hardly do any thing for myself. Can't cook. change clothes , bathe, open bottle tops (including pain med prescript), etc., due to non-fractured knees, wrists, elbows being terribly painful, even though just strained/sprained, bruised and all around banged up. Just eating stuff like bananas and crackers, leftover Mexican, because no need to open or make anything. Had to hunt and pick this whole post with only right index finger. Just wondering how long it will take for everything to stop hurting enough that I can basically function.
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Threetree wow that was some ordeal. I hope you heal quickly. Do they have door dash where you live. I hope everything gets sorted out soon. Nice of the lady to stay with you.
waving hello to all
Tanya
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threetree So sorry your fractured your humerus, that's rough. Hoping you get some meds in you to help with pain. Hugs.
irish Hope your results wind up being all good! It's difficult to figure out some of the medical lingo. Hope you get some clarity soon.
Shana Sorry your exhausted and dealing with the big D. Hope you get good rest tonight and some relief.
Well my big D wound up being Salmonella. I'm happy to know my colitis wasn't caused by Keytruda. Going for labs tomorrow hoping levels are on the way up so I can restart treatment this week. Since my symptoms have resolved I just have to watch out for recurrence after restarting chemo. Gastro said better to let my body shred the rest rather than treat with antibiotics. Fingers crossed.
Emac I too would be hesitant to stop the Taxol also. I feel if you are doing fairly well with it keep going. You can always call it quits if things start to go sideways. Never want to think ,shoulda ,coulda woulda…Follow your gut.
mara Glad you got your computer woes figured out, can be so frustrating. Sorry to hear about the ongoing obstacles with roadwork outside. Hope they finish earlier than expected.
Thinking of all as we start a new week. In everyone's pocket for appointment's and scans.
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I am so sorry threetree~ that’s awful. I’m glad you didn’t hit your head. That is a scary feeling to almost pass out….. just take one day at a time. Sending hugs of strength
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Tanya - Thanks. Yes I do have Door Dash, Grubhub, etc, but I live in an secure apartment building and when they come, I have to go down to a gate and meet them. Not quite up for that yet. I also have a couple of frozen dinners in my freezer. and I think I should be able to open the packages and microwave. going to see if a friend would be willing to take me to a local grocery store deli too, for some ready-to-eat stuff that might last me a few days.
Yes, the lady who helped me was wonderful and stayed with me until I was in the ambulance. Areal big help and comfort.
Cookie - appreciate your sympathies. Still reeling and can't believe it happened. Did manage to open Tylenol and Advil bottles, and they are helping a bit, along with lidocaine patch for sprained right wrist.
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cookie54,
Did you figure out the source of the salmonella?
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I have been back and forth and have decided to stick with the weekly Taxol. I think I just hit those really hard days that come after infusion and it's just so hard to imagine keeping going. Saturday and Sunday were a wash as I was so fatigued I could hardly stand. I have some significant numbness in my feet and have lost my sense of taste but given the alternatives I am telling myself I can do this. I am already feeling stronger and so I should have a few good days between now and Thursday.
Mara - I'm glad the internet is up and running well and kudos to you for making it out to the mailbox.
Threetree - oh that sounds horrible. I hope you can get some help to the store and that it heals quickly.
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weninwi I did not figure out where I picked up salmonella from. The symptoms started the last week in July so I went back through my bank statements to see where I had dined. I may have narrowed it down but I also eat salads nearly every day. So I'm not really sure, I'm thinking I may never know. Thank God my husband and son were fine. Hope your new treatment is treating you well and you get a long run on it!
Emac We totally understand where your coming from. When you feel so crappy and wiped out you can't imagine mustering up the strength to do it again. Glad you are feeling a little better and decided to keep going. Sending you strength and endurance.
threetree Wishing you a better day today. Hope you were able to get some sleep.
Mel Thinking of you and hoping your mouth is calming down.
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Mel - Thanks. Yes, that just about to pass out feeling is terrifying and very real from what I've been told. I thought I was "goin'" right then and there.
Emac - Appreciate your sympathies. You of course have mine too for your latest "adventures with life". A friend is taking me to a previously scheduled appointment with a neurosurgeon for problems related to ongoing spinal fractures/mets (not related to this fall), and she has mentioned willingness to do a store run also.
Cookie - I am indeed ever so slightly better today, which I think is a good sign. Any progress, even if it's slow is most welcome. I hardly slept at all the first night, but did real well last night.
Usually with salmonella, you hear about a lot of other people who ate at the same place who got sick also. Yuck, and so sorry, hope you continue to feel better fast.
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Three tree, I am so sorry you fell and broke your humerus. I understand the passing out feeling that comes but hopefully someone can help out with groceries or meals or such as doing everything with one hand sounds tough. In your pocket hoping for fast healing.
Emac, take it easy, the exhaustion can be overwhelming for sure and that is hard to deal with for sure. I like to do small sections of dust and vacuum and stages in cooking as exhaustion hits me whenever it wants. Pocket duty with extra energy.
Went out to community mailbox, even walked over the uneven road without any trouble, was happy about that. No construction and very light traffic, good to know I can travel by foot. Unfortunately, my keys to the temporary community mailbox don't work. Requested new ones from Canada Post, chat said 3 business days, will give til Friday. Phoned over to cancer clinic to get a few more appoint times since they cannot mail or I won't receive them. MRI to see if there is anything wrong brainwise that is picked up on Oct 19. See RO on Oct 26. I will go to the RO myself due to the fact that I will be able to interpret any results better than SIL and the RO will have any evidence or lack thereof of any damage to the brain. I am still not believing it is a brain issue due to lack of falls, Had 2 on the ice last winter and one in my apartment, balance is improving a lot. Short term stuff is along the lines of talking about movies and not remembering an actor's name and stuff like that. SIL helps but I think she thinks I am far into some sort of brain damage which is not the case at all. Trying to decide if I want mall walking today or schedule a paratransit ride today, thinking of leaving those mostly for medical appointments.
Other than that, happy with internet working, getting stuff done moneywise, laundry of course and deciding breakfast. I am also debating reducing the peanut butter because I have no control of myself eating it out of the container as a meal and that is bad. I may have to figure out precooking meals in the morning so I can heat stuff up in the oven. Will start having peanut butter post meals. Thinking I want a mexican themed english muffin. Would chop up beans, wheat bran and the like, melt some cheese for the top as well. Take some taco seasoning, make it spreadable to the english muffin by adding to butter. May or may not include precooked egg to eat more like a sandwich. I also need a use for some almonds I forgot about, may chop them up as needed for an extra seasoning.
I hope everyone has a good day, always in pockets, please kiss all your pets for me as well.
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Mara - Thanks very much for your thoughts. Things wouldn't be too bad if I actually did have one good arm. I could manage most things that way. Unfortunately, even though there were no other fractures, my right wrist and elbow got jammed and are so sore they might as well be fractured for how much they hurt. I must say, however, that I am truly amazed at how well you cope with all of what I read that you have had to go through. you are an inspiration, indeed!
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threetree, I am learning to be more resourceful for myself, got my next few appts by phone with a little grumbling, got post office in chat issuing a ticket and will get further instructions. I also am no longer going to listen to anyone for health advice except you guys and my doctors. I really am not convinced brain issue is going on. I plod forward as I need to. Life is not actually that bad for me as I think about it. I am easily frustrated but am able to get over quicker. Enjoy saving money as well. Those things keep me busy as well.
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Hi all, I saw the pulmonologist this morning. He's concerned about the continued ground glass opacities and the tree-in-bud nodules in my lungs but is willing to wait until after my next CT scan in November to scope them. My coughing has improved significantly so I don't feel like I'm in crisis mode. I'm not SOB or anything like that. He did say that if the opacities are still there in November, he'll "insist" on scoping them to see what's going on. He took a lot of time with me, and I feel confident in his judgement.
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Well, have a office person coming to meet me at mailbox to check keys today at 2pm, it is raining so will likely have an UBER as not wanting to walk in muddy conditions, lumps and bumps are one thing I can do now when dry, not interested adding more to it, can walk later when it dries up, not many rainclouds but not taking chances
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@threetree If you need help with grocery shopping and no one is around, I may be able to help since we both live in the same city.
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