My Husband, My Life, My Love, My Family, My Cancer
Comments
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I hear you on wanting more activity. There are times I just cannot get the energy to even walk so I can empathize with feeling and wanting to do what you were doing. I find that if I want steps, I march back and forth across the living room. Takes a minute each way and swing arms to earn the steps. I don't have time for any more outdoors walking today before I leave so it is easy enough to do for me.
I also like the living room marching because it is easy to get up and do 500 steps and even that small amount is an effort and perks me up.
I hope you get more adjusted to the new meds so you can do some walking as well. I have never been a gym rat either. I only ever used the treadmill and rowing machine. All the gyms are closed here so I could not join even if I wanted to.
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Pity party coming.
I tried to call a couple of friends. No answer. Left messages for them. I understand. Easter. Families gathering. Nice weather today. Just feel lonely and forgotten here. Our family doesn't get together---dysfunctional. So "holidays" are not fun. Things so different now from years ago. Mom gone. She used to keep us together. Now no one seems to care. Sometimes I feel like I am already dead. Like no one would miss me.
Sorry. Just feeling blue. Time to walk on the treadmill.
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Booboo - in your pocket for scan. Fingers crossed for any news that isn't terrible! Author - it's been said before but really, I don't have much to write about. My life is pretty dull and often, stupid.
Sunshine - I also feel bad that I can't keep everything straight in my head that goes on with everyone. Mel must have to employ a different computer with a spreadsheet of changing events just to stay on top of it. I imagine this thread is a full time job for her! Everyone who knows who is doing what must take notes. I can't hold that in my brain. I walk into a room and then stare into space as I ask, why did I come in here? It's bad. Worse now.
Candy - sorry you are getting those unanswered calls. They are especially sharp when the echo of a quiet house is so loud. I need to talk to people at tmes like this, I need to barf out my terror and agony and despair. But I don't want people HERE, that's too much. I want them to hear me and I want ot hear them but I want to be able to terminate the conversation when I am overwhelmed by grief and I need to seek my bed and pillow and curl up and pretend that I am going to okay, even as I know I won't be. For me talking and writing holds great value. But right now face to face is painfully too demanding.
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Candy, I am sorry that your calls are not being returned or answered. It is hard being alone, I feel this quite a bit myself.
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Ah, Elderberry, I'm with you. I love to sit or work outside and watch the birds and listen to them. And all the other critters as well. There is so much life in a garden.
Booboo, you were saying how tired you are, and also dizzy. When you said you had weaned off prednisone, it made me wonder if you should ask to have your cortisol levels tested. Sometimes the body gets dependent on steroid drugs and stops making its own cortisol, which is called adrenal insufficiency. It causes huge fatigue. This happened to me several months ago. I had just assumed that all my fatigue was directly from cancer treatment. But the endocrinologist found that my body was not making enough cortisol. It could have been from coming off the steroid med budesonide too quickly. I was given some low-dose cortisone pills to help me feel better while my own adrenal glands got properly revved again, then I weaned off them. So I learned that while we understand that we live with fatigue from cancer and/or treatment, we should not neglect to consider other causes of fatigue that can happen on top of that, such as adrenal insufficiency, iron-deficiency anemia, vitamin D deficiency, thyroid problems, sleep apnea, other sleep problems, etc. Now I am back to just "normal" fatigue.
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Runor,
Because you say it like no one else, I would love to see you write about MBC. You could sprinkle some funny stuff in with the serious (like when you wrote about the wild thing called facial hair). I wonder if it wouldn’t sell out immediately by those of us with this horrendous disease. Just think about it.
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Just a collection of what you have already written here on BCO, runor. But later. After this current stuff has calmed down. Hang on, my friend. Picture us all standing quietly around you, quietly lending our love and strength. We make no demands on you, you don't have to be any way other than the way you are. We will hold you up when you need it, and stand guard while you sleep. Just breathe.
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Mae, that’s a bit weird as I also have a scan on April 15th! First one after starting Xeloda, so we’ll see. Fed up of being chained to the toilet....
Candy we are here, maybe not every day, but we are here.
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I'm ready for a busy week of pocket duty. Good luck to all of you. I have MO phone consult at 7:50 tomorrow morning, not usually up and ready for conversation at that time (I am definitely not a morning person). Then on Tues. I have labs and fasoldex shots. Start 16th cycle of Ibrance tomorrow.
Thanks so much, Candy, for keeping track of everyone's schedule. I think we should make you Secretary of Mel's Living Room!
Have a good week everyone. Spring is in the air.
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Had a nice dinner at DB house, turkey and stuffing, sent home with leftovers. Chocolate which I don't need but will eat of course. Was very relaxing and comical when the 4 of us were done at the table, we relaxed in the living room, all of us on our phones. Still talking to each other of course but it was all relaxing.
Candy, we are all here for you when the loneliness creeps. I often feel a similar feeling for part of my family that I did not part ways with but don't see, mostly due to busy lives of the other people. I am glad to have everyone here and my phone friend as I can say things that I don't share
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Karen, this will be my 2nd set of scans on Xeloda. I expect the body to be stable and am hoping there’s nothing new in the brain, which I why I switched to this new combo in the first place.
I had some major digestive issues at first too, Imodium daily, then every other day, now it’s been months. I guess my body adjusted, I hope yours does too.
Runor and everyone, don’t feel bad about not keeping up with everyone. I never could, I just go by topics on the current page mostly. I don’t know how some of you do it but I imagine a couple of you with spreadsheets, lol
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Lee- Haha. Ironic. I did a short stent as my church's secretary once. And I studied secretarial back in high school (in the days of typing and shorthand, wow a long time ago). I thought my career was in secretarial. Did not turn out that way, but I have always enjoyed organization and such.
Mae- No spreadsheets here. I cannot even figure out how to do one. LOL. I just use a piece of paper and pen next to my computer.
Stayed up late last night watching a movie. "Heaven is for Real". Saw it before, but saw it was on TV again so I stayed up. Today is making out bills and laundry. Pocket duty for all.
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Good morning! Here for busy pocket duty this week. Prayers that results arewhat each of you hope for.
We just got back last nite from visiting our kids/grands for Easter. And house hunting when hubs retires in August. The housing market there is absolutely crazy. Stuff goes from active to under contract as you do a walk-thru. Puts lots of pressure on the house buyer. Refuse to give in to that pressure. But after one day of looking, we now understand the mechanics of the housing market and will be ready to pounce. Probably heading back this coming weekend. Fortunately our daughter can drop what she's doing while the kids are in school and can do a video walk-thru for us.0 -
I hope everyone had a good Easter. I was able to spend time with my folks and younger brother which was nice. The last week has gone a little sideways for me. I have been struggling with abnormal amounts of fatigue and when I got my labs drawn last Tuesday my MO discovered I am neutropenic again. My ANC is down to 1.1 From 2.8 in January and so I am having more labs tomorrow to see if they stabilize. If not I will have to be pulled off my Verzenio for a week to see if that helps. In any case, this fatigue has been horrendous. I am struggling just to get up and dressed and I just feel like I'm walking through sand as I go through the day and there seems to be invisible weights attached to my limbs.
I ended up in Urgent Care on Saturday with a temperature and pain across the right side of my face. Looks like I have developed an ear infection on that side so I'm on a week of Amoxicillin to see if that clears it up. I am thinking it wouldn't be a big deal if I weren't contending with the low neutrophils at the same time. The two of them have just drained me. So I'm doing my best to try and get things done in small spurts. I would swear that even breathing seems to take more energy than I remember.
Thank you Candy for listing out all the pocket duty for this week. Consider me all-in. I am anxious to hear updates and hold you all in my thoughts this week.
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Mae, many thanks for that... I live in hope that my body will adjust as your’s has!
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emac- I hope you feel better soon-- with the antibiotics and the pause of the Verzenio. What our bodies go thru. I have posted before that Ibrance has been hard on my ANC numbers. And, Yes, to the fatigue. I wonder what this does to our bodies over time-- to be walking around with low numbers all the time. Not normal. Got to be hard on the body.
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Hello ladies~always good to see you all. I'm popping into say goodnight. I'm going to try to sleep, sure hope the allusive comfort restful state finds me. I wake up every morning thinking. I have cancer. Fall asleep every night at some point think I have cancer. It never escapes you.
I'm reporting for pocket duty tomorrow as needed. I think we've got a busy month with Mae and Karen I think scanning on the same day. Treats in hand I'll be there. Another wasted Easter has come and gone. No real gatherings. My dd and Sil have covid so we basically had nothing special whatsoever. Another wasted holiday. They are getting better but still like wasting weeks being sick. Who needs that. God knows we know what that feels like. I always say imagine covid every day all month all year. Kinda makes them bottle up quickly.
I'm so bored most days I'm reaching crazy town. Even though people are around me. I still feel so lonely. They don't belong to the cancer club. They don't wake up with that stres and angst. I watch all these commercials and normal living and I think I can never do all of that in one day. Not even half that. My fatigue is so bad. 100 mg no difference so far. I've been on it one cycle. So maybe I need more time to adjust. But it's bugging me. I'm running out of things to try. The looney bin sounds good. Losing all connection to reality sounds good sometimes. Leave it all behind. Sadness , anger, worry, fear, Anxiety, loneliness, isolation I could go on. Cancer is so lonely. It truly is.
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Micmel, I hope you do rest. It is a brief peace and break. I am a night owl by nature, ghosting around at 2 am. But since this uterus bullshit I have gone to bed by 9:30 every night, exhausted from the anxiety and tension. Sleep can be a brief blessing. I hope the hand of peace passes over you and soothes you to slumber.
Someone told me I really have to change my attitude. I have to be more positive. I have ranted before about the mindless demand for pointless positivity. Why deal with surgery, radiation and chemo when you can just Mary Fuckin Poppins your anxiety away? All it takes to change your grade or stage to something better is just happily wish it so. It's your negative attitude that's giving you cancer, don't you know? This will only be worse if you don't change your attitude. Oh my god. Oh my god!
Got an email from doc, a questionnaire, basic medial stuff. Fill it out and email back. Well do you think I could find how to return that stupid pdf as an email? Could not make it an attachment. Didn't matter what I did it wasn't working. Then all the answers I had typed in disappeared and I cried. I bawled like a baby. I fell apart. Hub came in and hugged me and I'm pretty sure I got snot on him. I lost it.
With my breast cancer (which I will now refer to as my first cancer) I did endless research. I went into this armed to the teeth with information and statistics and treatment options. Now, the more I read the more demoralized I become. As I read about the long term effects of pelvic radiation, how it can come one months and years after and is not a condition that goes away, I am further destroyed. I have to shut the computer down, walk away. I am not feeling more secure about any of this. I am feeling utterly ruined and terrified. I just want to throw myself into traffic because what I know or don't know isn't going to change anything. I'm either in for whatever it takes or I refuse whatever it takes. Knowing, it seems this time anyway, is pointless.
Pocket duty, hugs and as my friend says, white light, to all. Thanks for letting me vent.
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Runor, we all know that positivity doesn’t change the outcome and anyone claiming that a negative attitude caused any of this is sadly grasping at anything to relate a cause/effect. But, as a terminal optimist, I can say that a good outlook definitely makes the shitshow easier to deal with. I hope you get a break from the worry soon.
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My thoughts and hugs for runor and Mel.
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Runor, had to go through your individual posts to get caught up on your situation. I am so sorry it is looking like another cancer to deal with it. I hope that it is still benign and horrifying fibroids or something but I get the impression nobody at the hospital thinks anything benign. I will support you and empathize with the situation as I would be terrified myself.
Mel, I get really lonely a lot of times too and the only thing that relieves it is going outside and admiring dogs for me. I have been on two walks and always tell the owner how cute or handsome the dog is if bigger. Makes me feel a little better.
I did go to bed super early yesterday because I was extremely exhausted, slept most of the afternoon. Still feel pretty tired today so will keep on my feet, going to go on a third walk in a couple of minutes to complete my 10000 steps. I find I am bored too. Sometimes just don't feel like doing anything yet then complain to myself I am bored. Stupid cycle.
I am also hitting covid fatigue. My province is in a lockdown which is not the part that bothers me. They are not vaccinated the right people, older people don't need it so much now, essential workers need it as they are going to work sick since they are not being paid to stay home. Our case numbers are going up and I don't see an end in site. I find myself turning off the news because it is all the same. I have started masking in my building now too outside the apartment and taking the mask off when outside.
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I’ve been peeking through the living room window for awhile now and I’m so sorry for the difficulties many are currently going through. Thanks for opening up your home to everyone, Mel. I hope I’m not overstepping by taking a seat on your comfy couch.
Runor, as I mentioned in another thread, I’m here lending you my support and strength when you need it.
Mel, you’ve been dealing with this nasty disease for so long and I can see that it’s taking a toll. Please know that you have personally given me so much strength while I’ve adjusted to this new crap-show, without even knowing you were doing it.
Mara, I hear you about Covid fatigue. We’re in lockdown again in BC too. It’s difficult for the essential workers who must work in close proximity to the public to keep our key services going. My sons are in that group and even though they aren’t worried (they’re invulnerable you know), I have a better respect for the risks.
It’s a busy week for me with labs and bone scan today, then monthly onc appointment and CT tomorrow. These are my first scans since my diagnosis so I’m super curious to see what’s going on with the little beasts.
Cheers.
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Ilowen - I hope those beasts are fading away. In your pocket for the scan.
Mara, covid fatigue is real! I hear you about being tired. I have gone from night owl to an old Granny going to bed before 10. This is unheard of!
Mel, as I type this I hope you are fast asleep, drooling on your pillow, snoring even. Rest is a blessing. Hope you get some.
Just got a call from the gyno and have 1:00 phone appt tomorrow. My heart is going to burst for fear.
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ilowen--- Welcome to Mel's Living Room, but all of our's living room. Plop down on the couch, hug a throw pillow, get a drink of whatever you like, and chat. Come anytime. Pocket duty for your scans and onc appointment--- if you read here you know about "pocket duty". Welcome again.
mara- I get the fatigue. I gripe about not having anything to do. Maybe I should volunteer somewhere. But then I think of the fatigue and ickies and do not feel like taking on a new project. Frustrating.
runor- Pocket duty for your gyno appointment. I know you must be scared. Hug.
Today was pick-up-curbside-grocery order. Making out some bills. Not too much.
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runor, I'm so glad you have an appointment tomorrow. Will be thinking of you!
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Runor, yay for the quick appointment! Tomorrow is so much better than your original date. You’ll find me in your pocket if you need a pick-me-up.
Candy, thanks for the welcome!
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In your pocket tomorrow Runor, I'm glad they are getting to see you so soon.
Welcome ilowen, in your pocket as well, hopefully your treatment is working for you.
I had to make a trip to the dreaded dentist today, turns out I've got an infection in my gum, hopefully the deep clean he did today can get on top of it with just mouthwash. I've been so tired these last few days as well, all I've done is sleep and eat.
Waving hi to all who make Mel's living room their second home👋.
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runor: I am relieved that you get an appointment tomorrow. Understanding what is wrong is half the battle. Pocket duty for you from me as well! Not easy, but try to quell the fear so as not to cripple yourself. Have you asked for an anti-anxiety med? They can help. They won't cure the fear but they can stop it from eating you from the inside out.
HUGS
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My scan today did not give me the results I had hoped for. There were a few areas where the word stable appeared, but it is definitely now in my liver. I have no idea how to feel. I have been feeling exactly like you described, Emac...walking in sand. I have no appetite and am tired all the time. I was going to fly up to PA next week to see my family, but I just don’t think I can. I have a call with my MO on Thursday, so maybe she can shed some light on where I stand.
Runor and Karen, hoping your results be better than mine.
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I am not just tired of the covid but frustrated that the wrong people are being vaccinated right now. It is younger people getting it and filling up ICUs now. Should be vaccinating everyone working with the public next while we are in lockdown. Lockdown should be tighter than it is until most people are vaccinated.
Biggest thing for me is that media is not letting people know that vaccination won't mean you cannot get covid and still pass it on. It just means most likely no ICU or death though it can still be passed on. I feel like people need to know that until everyone is done.
Overall I am only bothered about store owners being helped by the government but still want a long enough lockdown to wipe the virus away and hurry with vaccines so less chance of death and icu.
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