My Husband, My Life, My Love, My Family, My Cancer
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Mae my niece had WNV had seizures and was hospitalized locally. Her husband was in the air force so they airlifted her to Bethesda naval hospital in Maryland. I believe that saved her life. Swollen brain steroids and a shunt. Is he still unconscious? She was in a coma and then induced to remain in the coma for a long time. When she came out she went through a rehab, physical therapy and forgot all of what her college degree was in (that kind of knowledge), but thankfully she lived. She's in her 40's now that was more than 20 years ago. She's on seizure medication since but is stable, drives works etc. I hope your friend does even better than that.
Mara Scanxiety is a good word we have; we need another word for afterscanxiety it's all terrible but waiting for results ugh, just gut wrenching.
Booboo enjoy the foliage and of course the loving company of family!
Candy you got your monthly visit to Dr. over with.
LivingIVlife nice you got your hair cut. I haven't gotten that brave. I want to get a pedicure and probably will but I'm scared for sure. Hope to see you Monday.
I've been eating with my family (extended) two weeks in a row woo hoo) but we sit outside. Three vaccines but I'm still leery. It's nice to see them up close and talk. It's been a long pandemic. And of course some vaccinated, none of the kids are yet.
Have a good weekend.
Tanya
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How do you honestly live Day by day knowing that your body is dying. In your mind you are fully aware that this is happening to you. You can't do a damn thing about except stay in shock , which I all think some of us do., or we fall apart and become emotional messes. I fall somewhere in between. In the group meeting the other day when a sister was sharing the rabbit hole she felt like she couldn't get out. Well honey , I think I took your place. It's like a tag team. I haven't felt good the past week a lot of coughing, shortness of breath. Just tight chest feeling and immediately it's spread, all over my chest I'm full of it. That's where my mind goes. The sadness erupts over me from behind and engulfs my nerves and fear. Shocking my system all over again. Like ptsd. My DH is reassuring as usual. Gosh he's amazing. I know it's hard on him. I can see all he does for me, for the house. For our life that the bottom dropped out of. A good man deserves better. It's not fair to him. He doesn't deserve this. Not even. Close. I feel like a burden. A dying slow burden. But seein myself I can see myself getting weaker. Slower. More tired. Slowing down my capabilities, showering less , bathing more. Whatever takes less energy at the time. I just notice decline. No one else can see it. But I know it's there. I'm worried about the scan in March. Back to that world again The world you were blown into BC. Before cancer.
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Micmel, I’m sorry you’re feeling this way, I wish I could say something to inspire you or fully appreciate your worth as a human and friend.
Tanya, thank you for sharing your nieces recovery. He was never unconscious but is being sedated because he’s trying to get up and tug on his medical stuff. He still can’t speak in a way that anyone can understand but he tries desperately. Hopefully, we’ll see real improvement soon. Until then, Monkey is safe and happy with us.
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Mae, so glad your friend has a dx although WNV is scary.Hoping the treatment helps him recover quickly!
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Mel- I am so sorry you are feeling these feelings. I too see my slowing down-- not recent, just over the 4 years with cancer. I used to walk fast. People walking beside me would comment. Now I don't have it in me to walk fast. I just shuffle along. I have to pause when doing housework. Stop the task and sit and gather my breath and wits and then restart the task. It is like a clock winding down. It is the cancer growing and being present in my body? Or is it the meds? IDK.
Mel- You mentioned coughing and short of breath this week. Maybe you should call your doc. Not necessarily cancer, but something else. Get checked out.
Tanya- You asked about my doc visit?? I posted about that a few posts back (same day-- Friday posts).
Are you guys seeing my posts???? I have made some comments and no one responds to them and then asks me questions I just mentioned in my posts. I want to make sure my posts are being posted. I see my posts but are you all????
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Candy, I hope you have a productive appointment with your MO on Monday, feeling nauseous all the time must be awful. I've just been resting mostly, all I want to do is sleep and apparently my arm has a fracture near the head of the humerus so I've got to see an orthopaedic surgeon on the 1st November to see if it's just a break or mets. I haven't had chemo since September 22 and it will probably be another 2 weeks before I can restart, my tumor markers are going up which I'm hoping is just from the pneumonitis.
I get where you're coming from Mel, I'm so slow now, I used to be able to chase Finn around the football field, now I walk slowly behind him while he zooms off on his bike or scooter.
Enjoy your weekend everyone as best you can, it's almost bedtime so I'll say goodnight.
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Candy~ I guess we all get into this funk. Thank you for acknowledging my crazy ass feelings. I know you’re going through a lot. I am also a shuffler. I can’t walk fast anymore. People race by me. Makes me feel like I need a scooter…. I don’t really go many places. Maybe that’s why. I can see your posts. If my coughing doesn’t get better this week on Tuesday I have a palliative care doctor appt. I’ll let her know then. Thanks for caring.
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Candy, I saw the previous post about getting your shots and going to the hairdresser. Sometimes multiple posts in a short period of time trip me up but I also found that I miss things when I close the page on a post, so now I go back to the main menu before closing. I do hope your nausea improves, and have you tried Promethazine (yes, I mention it often, it’s just been so great for me).
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I used Reglan. It seemed to work well also. Have you tried that? I still use it when. I have my bad days.
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Thanks guys for acknowledging my posts. I thought maybe they were getting lost in cyber land.
Kittykat- Fractured humerus ?! Good grief you have had it rough. Just fractured on its own? Nothing you did? Get some rest.
Mae and Mel- I have not tried Promethazine or Reglan yet. My Palliative Care doc ordered the Zofran. I messaged her that it doesn't really help and causes me to be groggy. She responded back that all will cause some drowsiness. She asked if I wanted Reglan. Did not mention Promethazine. She did mention Zyprexa !!! An antipsychotic. Said it has shown to help with nausea. Antipsychotic?! I don't want that. All new side effects including chance of tardive dyskinesia, confusion, or thoughts of suicide !!!! So I have just been dealing with the nausea. Small frequent snacks versus meals. Drinking Ensure. I am going to ask MO if we can lower the Lynparza dose--- we start at max of 600mg a day. Maybe down to 500mg???
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Candy, Promethazine is an old (1950’s) antihistamine, which is also used for motion sickness. I tried zofran and reglan but neither helped. Once I got Promethazine, it worked quickly and after about a week, I found I no longer needed. Now I keep it on hand for the 2-3 days per month that have nausea.
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Morning everyone!
Mae, I'm glad your friend has a diagnosis. Not that anyone would wish WNV on anyone else, but maybe they can target their treatment more effectively.
Mara and Mel, I'm sorry you're in a funk. It's so stinkin' hard when you don't look any different on the outside from how you looked yesterday, but you're falling apart on the inside. Makes you want to scream, "I'M NOT OKAY!!!"
To all of the rest of you ladies (and gents), I hope today is a better day than yesterday. Makes me think of a M*A*S*H episode where the team is getting on each other's nerves, and the CO calls in the psychiatrist, Dr. Sidney Freedman. He tells them, "Take my advice. Pull down your pants and slide on the ice."
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Thanks Sunshine, feeling less than the best today physically but not mentally, taking it easy and watching TV, l am not giving myself a hard time about that. Watching a fellow on you tube eating 3 meals a day for 3 dollars, really interesting what he does with the food he makes.. HIs channel is Atomic Shrimp on youtube. He does not need to eat this way but is demonstrating what you can eat on an extremely limited budget.
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Holy crap - just did a bit of mending and I wanted to cry. Could barely hold the needle and my sewing skills were horrible due to a weak shaking hand. The osteoarthritis must have really progressed. I know I’ve had a hard time opening jars and bottles for a while now. And my hubs wanted me to mend a couple ties. That requires tiny stitches - it will have to wait till a best friend comes to visit🙄😢🙄
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illimae: Yes, I know HER2+ puts me at higher risk for brain mets. I am having a tele-appointment with him beginning of November. I think perhaps I should whine some more. I guess because I can have a string of days with barely any headaches at all he is thinking it is not likely to be mets.
My sister has very arthritic hands and has a pair of gloves made from material (silicone?) that supports her hands so she can colour and sew.
Sorry to see so many of us in a funk. I had a weird vision of us once -- all dancing in a long conga line with Lt NED at the front. How I wish!
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candy I went back and found your post. I’m the crazy one.
Sunshine I like your MASH slide your butt across some ice. That outta improve our mood.
Elderberry as soon as we do the ice slide we can do the conga line to warm up.
How many steps will Mara get on the conga line? I expect I’ll be watching Mara dance for a long time getting to 16000 steps!
Mel sorry you’re down. I hope it passes soon. I have to resume ibrance today. Always think after 7 days off that maybe I’ll take an extra day off. Just a thought but not today.
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Mae~ I’ve never tried that one nausea medication. I’ll keep it in my Arsenal. Hope your friend continues to get better. That is scary my friend. Thank goodness for you guys.
Sunshine~ I’d also like to smack some of them across the head. People are clueless. I’d love to scream that to some people. If they’d even listen.
Mara~ 3 meals for 3 dollars sounds like a couponing show or app. Wow that does interest me as well. Everything in price is going up. Nothing can be delivered timely. Strange times are at hand for us all.
Goldens~ I hope your hands stop giving you such issues soon. Or at least back off. IM having a transition with my eyes. Glasses on or off ? It’s driving me nutso.
Tanya~I start my week soon also. I often think a day or two delay wouldn’t hurt anything. Considering I went off a month for a break. Then lowered my doseage. I did not ask my doctor, I just delayed a week. I needed it for my mouth. It was killing me. It worked. I intend to tell my palliative care doctor when I see her Tuesday .
BooBoo ~ have fun with this perfect pa fall weather. Enjoy your family. That’s what’s most important for you. I’ll take any chance to see you in the future. Why would your DH never go back to pa? The cold ?
Elderberry~ sounds like anything bed for all of us works for me. Conga line. Full out concert. Firework display! You name it. I hate you cancer. my DH lost one of his good friend to pancreatic cancer this past week. He was only 57. Such a shame another life snuffed out due to cancer. He was a really cool dude too.
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I love the conga line, Elderberry. Mara will be dancing up and down the line doing twice as many steps as the rest of us and urging us on.
Zofran works for me, but compazine is horrible. I was given it once when I asked for an anti-nausea med with a new chemo and assumed they would give me zofran. After I had already swallowed it, I told the nurse I was glad I did not have to get Benadryl with that chemo because I did not want to be made sleepy. Ha! She got a funny look on her face and told me compazine might make me sleepy. Well, it made me feel not just sleepy but absolutely drugged, struggling to keep my wits together, grouchy, queasy, hot, headache. I hated it so much I made them put it on my allergy chart so I would not be given it again. But it works fine for some people, so I guess maybe one just has to decide to try it once if nausea relief is a priority.
(Edited to correct the name of the drug.)
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Tanya-
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Tanya, a conga line sounds like a lot of fun to me
Mel, here are a couple of videos
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Shetland, wow, that’s a really unpleasant reaction to it. I’m on a low dose of 12.5mg and carry a lot of extra weight, maybe that’s a factor. Luckily, I get nothing but relief from it.
Going to spend to time with little Monkey now, goodnight all.
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Aaaaaak! I said the wrong drug name! It was compazine that made me feel so awful. I am sorry. Chemo brain strikes again. I've edited my post above.
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Sunday morning all.
I was thinking--- I have not kept up my beside-the-computer notes like I was doing. I do not have a "pocket duty" list like I did before. So---- THOSE THAT FOLLOW THIS THREAD, just shout out if you have scans or appointments this upcoming week and I will list them so we have them in a go-to list.
What do you think? We can do this week by week for that upcoming week.
Thoughts??....
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Great idea Candy. I definitely want to know about our sisters scanning.
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Candy, I think anything you want to do is great, even if it’s nothing at all but I get the feeling that you enjoy being organized
I have my standard Herceptin and Xgeva tomorrow, pocket duty not necessary for that but I think if we all post for the upcoming week of scans or anything we want support for, we all would be able to keep track much easier, great idea!
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Candy, that's a great idea. Thanks for offering to keep track of those who want pocket duty, prayers or a virtual hug. I have a CT scan and bone scan scheduled for mid-November. First scans since June when MO suspected MBC. I will definitely be asking for pocket duty.
Tomorrow I have a blood test, Zometa infusion, and meeting with my MO's NP. Not really too stressed, but hoping blood test shows improved or steady WBC and neutrophil counts. Had my first cycle of Ibrance 125 mg dose in August and WBC and neutrophil counts were lower than MO wanted to see. In September she switched me to 100 mg dose. And, WBC, neutrophils improved. Calcium and CA 27-29 have also declined a bit. Hoping that trend continues.
Wishing everyone a peaceful week, Jan
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Here we go---- Will add names as we go along. Week of October 25.
illimae- Herceptin infusion and Xgeva shot--- Monday
MoCoGram- MO's NP appointment, labs, and Zometa-- Monday
Candy- MO appointment and labs-- Monday
LivingIVLife- MO and labs-- Tuesday
Karenfizedbo15-- CT results--- Wednesday
GoldensRBest- CT and bone scan-- Tuesday and MO, Xgeva, and discuss results--- Thursday
Mara- MRI results-- Thursday
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Candy, I could use some pocket duty on Thursday, getting results of MRI from this past week.
Well, finally decided to go for a longer walk, walked up to a dollar tree. Thought maybe a friend would be working as this is or at least used to be her side hustle but she was not there. Picked up some treats for myself, humpty dumpty sour cream and onion rings, can use those on top of my bean meals at different times. Also got some chocolate, Hershey's bar with almonds and a couple of Reese chocolates. I've got better at not eating all the treats so that is good. My step tracker recorded 17727 steps or 7.27 miles, went just after breakfast. First part of the walk was a challenge but about 20 mins in, it was fine. Sat on a bench outside before trekking home and had a granola bar and water and walked home. Again, I am most definitely not a speed walker, not because I could not but because I don't need to fall down. Have not fallen since early 2020 but still, steady pace wins the race for me. I have a goal of walking 10 miles someday.
I was reading some doctor who was saying that 10000 steps are not enough and we should be walking 20000 every single day. Wondering what planet he is on assuming everyone has the ability or time with work and family obligation. I think that puts too much pressure on people or makes them feel what they manage to do is not enough. Just my opinion.
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pretty awesome to offer Candy. Thank you. 💐
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Candy- what a great idea!
I have blood work and MO appointments on Tuesday the 26th. My white counts have been on the low end.
I also read the posts regarding HERS2+. I guess I'm questioning my Ibrance medication. When the biopsy was done on the tissue they removed from my lymph node it originally came back HR/PR+ HERS2-. The MO when reading the notes was questioning the HERS2- so she requested a second opinion. It then came back positive. Since she had already started me on Ibrance for MBC and it was working I have been on it ever since 2019. The catscans have always come back ok with no further progression. (other than the lymph nodes tissues bones and breast tissue that had been left from my mastectomy 20 years ago) There is a small spot on my right lung also.
The MO is my 3rd in the 2 years. He is French Canadian and have a hard time understanding his broken English. 😢 Should I be questioning the Ibrance or if it's doing its job which it is then keep going with it . I guess I don't ask enough questions when I'm there.
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