My Husband, My Life, My Love, My Family, My Cancer
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Dodgers girl, it was affinitor that caused my pneumonitis as well, can I ask how long it was before it started to affect you, I was on it for 6 weeks before I started having breathing problems, before that I felt the best I had in ages and my tumor markers were way down. I hope you start to feel better soon and can be able to breathe without the oxygen. Hopefully they will be able to get a better control of yours and Goldens DH tachycardia. I just have a mild case and its very uncomfortable,, so I can only imagine what its like for them.
I still have a cough and feel like I have no strength, I slept almost all day yesterday and most of the night, I'm supposed to have chemo tomorrow but I won't know if they can go ahead until they see my blood results from later today which won't be available until I get to the oncology unit on Wednesday, luckily its only a 10 minute drive from home.
I'm not afraid of dying so much as being in pain before I go.
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Ah Runor,
So you think I’m a BSer? That I am lying when I say I am not afraid to die? Well, you are certainly entitled to your opinion. If you had a life-long relationship with God like I have, you would understand. I don’t know any other way to feel but content to know that when my expiration date is here, I’m good to go. I truly hope you find the same peace that I have found.
BTW, I still love ya, you crazy lady!
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KittyKat— I started Afinitor in October. Noticed I was short of breath during the night in early December. By Christmas, I was afraid to sleep in bed. Had scans right after Christmas that showed lungs filled with infiltrates. Early January placed on 5 day dose of steroids. I felt to much better. A few days later, pulse ox dropped into low 70s which landed me in hospital for nearly a week. Released on more steroids and oxygen. Was improving in March. Had my second CoVid vaccine the end of March. Scans in early April showed the PE so was prescribed Eliquis.
On home oxygen from oxygen concentrator since January. 2L when at rest and 3L at activity.
I do pretty good without oxygen when sitting in my chair but pulse ox drops right away to upper 70s-lower 80s when walking around without oxygen.
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booboo, I really appreciate your letter to friends, you know how we all get when one of our gang stops checking in without warning. I wish you nothing but good days ahead.
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booboo, I am sad to hear that there are no treatments left that will give you quality of life. I admire your strength to recognize this point and stick with your decision. I understand the comfort your faith gives you for going home. I hope you have many joyful days and months ahead of you.
Goldens, I can only imagine how disappointed your husband feels - to have gone to all that trouble for it not to last. I guess you could compare it to a failed treatment regimen for us. Are there other treatment options for him?
Kittykat- what a cute little MG! I love it - it looks like a lot of fun!
Karen, your little getaway sounds fun and relaxing.
We've been traveling a few days again - just for fun this time. We thought we might look at another house, but it's not quite where we want to be. Moving may just have to wait until the housing market settles or the perfect house turns up.
The results from my parathyroid Sestamibi scan and u/s were negative, so my endo is referring me to Dr. Norman. I just have to wait/hope the insurance works out. I'm pretty confident, but may have some hoops to jump through.
Waving to Mel, Mara, Candy, dodgersgirl, Mae, Runor, and everyone else!
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BOOBOO! Agh! I was not clear! I DO NOT think you are a BSer (although I do admire a good BSer, let's face it, it's a skill) I just can't grasp that anyone can face death unafraid. That boggles my mind! So I tend to be skeptical when people say it, off the cuff, flippant like. Not that you did and nothing about your situation is 'off the cuff'. When not tested against reality it's easy to say one does not fear death. Death, for most of us is an abstract and distant thought. But when you've been told you have cancer, that puts a whole other spin on the death situation.
If you, me or anyone is posting on this forum, it's because we have heard words that took death from an abstract concept to something that is screaming hot breath into our ear. I think every single person here since the beginning of BCO has thought about death in ways they formerly never did. So when you say you do not fear death, my dear BooBoo, I believe you. I believe you with every fiber of my being. And that I made it sound any other way was clumsy of me and not at all what I intended. Just that the 'average' person often makes that claim when that claim has never been put to the test. Here, we are put to the test. Here, you have been through the fire. Here, you get, with support of every single one of us, to wake up every day and feel no fear. None. Live. Live well and without fear or regret. For every minute that you can.
I apologize for my inept usage of the language.
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I be have had people say both. Ive often asked BooBoo how can you not be afraid? Her faith holds steady. I wouldn’t want you to be afraid. I am afraid. Terribly afraid. I just would like the guarantee I’ll see my loved ones again. That would make it easier. When I first found my lump, and it wasn’t going away. I would snark and say “ I don’t want to know what it is, who cares at this point, it’s so big it’s gotta be Cancer”. But deep down inside I was screeching for myself. Inside. I knew. I want to see my dogs. But I also want to live. But qol is so important. I am holding your hand, and waving hello to runor and everyone else. Cant sleep tonight. Still battles here. “DH, it’s time for him to move out”, My response “ well, I’m in no hurry for him to go”. DH, “ he’s old enough”. My response. “I don’t care “. I feel like I want my people net around me. With me. My people. I don’t want to miss a thing. I love. My kids. Having my son home reminds me to smile each day and see his big blue eyes. That’s all that really makes me happy is the kids. Good kids. Love to all. Gonna try to sleep it’s 2 am!
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Dear Runor,
I kind of pranked you…I knew you weren’t directly calling me a BSer (I’ve been call worse). Just wanted to stir the pot. I know, that’s bad, but you make it easy, my friend! All’s well.
Mae, I hear you. I am going to do everything possible to stay connected for as long as possible. You guys are too important to me.
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So some relative good news on hubs - he spoke w/cardiologist who told him it is common to have recurrences of a-fib and tachycardia while the heart is healing. Why the hell wasn’t that part of discharge instructions!!! Still, pulse of 180 is way out there. By the time he got to work yesterday and had vitals taken, BP was normal and pulse was 70. He had an EKG done and is waiting for the diagnostics from that. Another case of docs dropping the ball in terms of patient education, something most of us have experienced one way or another.
Happy Tuesday everyone!
BTW - did the MBC zoom meeting yesterday. A great way to spend an hour. Can actually put faces with some of the names on these boards
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Goldens- Yeah, great way to mess up patient discharge instructions. Good grief.
I am too concrete thinking / controlling. I guess my faith is too small. My mom passed 7 years ago. I know she is in Heaven. I have several friends from over the years that I know are in Heaven. If only 1 of them, mom or a friend, could tell me "This is wonderful" "We are waiting for you" then I think I would feel some better. Though, I would still be concerned about the How of how I will die--- pain, just off to sleep, alone or with loved ones around, etc. I KNOW that I will go to Heaven, deep down I KNOW. But the fear of the unknown is there too. We are only human. Each of us taking the trip to the unknown.
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booboo, the fact that you are a bit of a shit starter is hilarious. I didn’t realize it either but you got me good, when I read your response to the BS comments, I thought “oooh, damn, here we go” lol.
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Laurie, thinking about you and echo others thoughts. Please do drop in and let us know how you’re doing? I think it’s just as important for us to hear how folk cope off treatment, as well as on as we’ll all be there one day. Lots of hugs...
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I love this Living Room (hmm, funny name for a place to talk about dying). I love that we share our fears or lack of fear about our deaths. I love that we lovingly tell each other that "you are so full of sh*t". and then pass the Kleenex box.
I have a group of girl-friends from college. We've kept in touch and had been having weekend girls' trips every few years. It's always wonderful to sit around a table or a living room with all the "Do you remember when?" conversations. We've had a few Zoom get togethers, but of course they're not the same. I'm looking forward to the face-to-face get togethers soon. I'll be the one with the mask.
I was just imagining this group of us in Heaven. I can just see it. One of you might say, "Hey, Carol, is that you?" And I'd say, "Yeah, but hold on a minute. I think I just heard my first Airedale Terrier, Theo, barking. I gotta go find him. Catch you later!"
Happy Tuesday everyone!
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I love you ladies !!!!!!! Lol.
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Sunshine, I love it! I am hoping that my dogs come running to greet me when I get there. Wouldn’t that be great?
I ove the Living Room conversations too:
Me: hey, Mel, would you grab me another one of those donuts?
Mel: get up and get it yourself.
Me: Ok. Hey Mae….you going into the kitchen? Grab me a donut?
Mae: Sure. (Donut comes back smashed.)
Me: Mae, what the #$&&***&&$ (I don’t think there will be swearing in Heaven).
Mae: You never said it had to be in one piece.
We’ll have some fun together, I just know it!0 -
Hi All-
I haven't posted or been on this site for quite some time. Was wondering if those of you who are on Verzenio can share your experiences, good and bad, with me. I just started this med about 3 days ago and it is not being taken in combination with anything else.
Thanks so much for your time. Wishing everyone well!
MM
(Angie)
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Sunshine- I loved your post. "Living Room, but we talk about dying". "you are so full of sh*t and then pass the Kleenex box".
I love you all.
Booboo- Good one about the donut.
I definitely want to see your faces in Heaven. Sit in Mel's Living Room up there. And laugh and laugh, with no MBC and no suffering.
Masonmawmaw- Sorry cannot help ya. I have not been on Verzenio. I hope you get some responses though. Have you tried the Bone Mets Thread?
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masonsmawmaw - there's a verzenio thread here https://community.breastcancer.org/forum/8/topics/...
Waving hi. Nothing to report here. I'm feeling well. No appointments this week, just sweet "my time" playing with Olive and doing instagram reels & trying to clean up/declutter. Hey, I got a new headband with a ponytail thing to wear with a baseball cap in lieu of a wig... I mostly go bald but my dog IG is cancer free so I wanted something that I could wear for those videos. I haven't opened the parcel yet to try it out but I'll try to get to it today.
We've been gorging on berry crisps with the June strawberries. My dd made a rhubarb strawberry crisp a few days ago and I made a plain strawberry one yesterday. I wish my tastebuds were a bit more intact but there's enough left to sort of get a nostalgia summer feeling from them. My ds is looking forward to raspberries next month - we've been going to this same farm for years and years. He & I had a lovely chat a few days ago reminiscing about going there.
I'm an atheist so I'm sort of thinking once we turn out the lights it's nothing. Boy will I be surprised if I'm wrong lol.
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I choose to believe that I will see everyone I have lost and furry family as well. I will imagine seeing my Mom who I still miss all the time and seeing my Dad from my older years. He died when I was 19. I am even OK if I see them as I am going and I am OK if there is nothing which is no difference than the world before I was born. I just want a peaceful trip when it is my time to go. I am still hoping for more time myself but I selfishly want to go before my older DB because I just can't lose him too. I have another brother but we will never be in contact again so I want to go before Chris.
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Having said all that above, I still want as many years of qol as the treatment and my own body and cancer allow me even though I am living alone. I am greedy because I still remember the doctors in 2016 the day after my met was found in the brain telling me to put my affairs in order which made me feel even more scared. I understand it is practical to do this now but it really freaked me out before.
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masonsmamaw - there is a lot of good information in the Verzenio thread moth provided. I have been on Verzenio and anastrozole for almost a year. You can pm me if you have any specific questions.
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masonsmawmaw— I have been on Verzenio since late January
Most annoying side effect for me is diarrhea. So far taking Imodium has worked.
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Hey living room. Nice fight fake booboo you’re a mess lol. I was like Mae pass the popcorn.
Finished the MRI which included my cervical spine this time so I had to wear the special helmet. I just thought of Mae while my DH rubbed my feet and I was able to make it through. Thanks for the support ladies you’re the best. And now the waiting for the results time.
Take care all
Tanya
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If there are no dogs in heaven, then when I die, I want to go where the dogs are. Will Rogers.
I know it sounds terrible to say, but I just want to be reunited with my fur babies
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booboo-- I join with the others hoping you get a good surge of energy as the chemo processes out of you and life gets more fun. I admire your decision to go for quality of life. I think it would be my decision too, but it's hard to know until you are really there.
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Nah, I knew booboo and runor were ok. I saw runor's arrow go astray and thought uh-oh, that's not what she meant. Even so, I knew there would be no popcorn.
Dodgersgirl, that really sucks. Do you expect to be able to ditch the oxygen tank eventually?
Mel, I say if you want DS around, you get it. Because you have cancer. DH can figure out how to cope. I am terrified when my kid talks about possibly moving away because the SO wants to. I scream Nooooo inside.
Goldens, how much trauma the cardiologist caused by not letting you know that these episodes might happen during the healing time. I hope you let him know.
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Funny donuts story, however, I’d never serve food that doesn’t taste and look great, especially to my friends.
Moth, I’m with you on the topic of an afterlife but I would be happy if my brain floods me with memories or a dream like scenario where I am reunited with loved ones, particularly my dogs. I’ve heard that this is what really happens as a biological function to make the transition easier, of course I won’t know until I know.
Brain MRI went fine today, results Thursday, I think. Other than that, just relaxing for me.
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I am another who just wants to see my fur babies. My heart is broken still. I’m still playing with getting another one. But I will admit it’s nice not to worry about putting something outside several times a day or feed it twice a day. But the love I have for Deeohgee would make me want to do it again. No matter what. I partly want to rescue and partly want a puppy.
Shetland ~ I want my ds and my puppy. Double whammy!
I also knew there was no brawl gonna go down. Two of the sweetest people I’ve met on here. Not possible. masonsmaw~ it’s been a long time good to see you.
Hello SeeQ! Hi ya Mae! BooBoo! Tanya ! Dodgers! Kitty! Hope you’re ok today in the new car. Sondra , rosies (red) Mara, Santa 💜,goldens, moth, Minnie ..Karen
Have a good night sleep
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ShetlandPony— ref oxygen concentrator: my pulmonary doctor does hope I get to a place where it isn’t needed. My last CT showed infiltrates vastly improved but also showed the PE. Doctor said he was not surprised as cancer patients are more likely to produce blood clots.
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BooBoo! You turd! You gave me a frickin heart failure! I'm all freaked out, oh my god, I can never post again because every time I say something I say it wrong and like Shetland said, manage to shoot an arrow into my own ass. You got me good!! I hope you are feeling better but if you were to grow a big, red pimple on the end of your nose for like a week, I'd think you kind of deserved it!
It's after 1 in the morning. I am eating a bun with peanut butter. I always think I can eat in my computer room and it's okay, I won't make a mess. Then when I have to disassemble the keyboard and wash it in the kitchen sink - yes, you heard me, wash it in the kitchen sink - I blame Hub for getting a gooey mess on my keyboard. The man has been accused of many peanut butter muck ups that I'm pretty sure are my fault. I am a closet peanut butter junkie.
I don't know if I believe in god. I don't know if I'm an atheist. I don't know. It changes. I worry that after death it will be an endless, silent, solitary blackness. A blackness in which I am aware of only myself. That, to me, would be hell. Eternity alone with nothing but my own thoughts. I had a dream once, and here under the cover of anonymity I will say that it felt like an out-of-body experience or one of those whackadoo astral projection thingys more than a dream. But it was blackness. Utter, eternal, impenetrable, cold, swirling blackness. I was in it and I was utterly alone. Just silent, senseless black. I 'came to' with a gasp and full body lurch. Even woke Hub. It was not like waking from a dream but more like being slammed back into my body. I was so messed up I couldn't even begin to explain it. I forget most of my dreams. I have never forgotten that or the sick feeling in the pit of my stomach that lingered for days after. I can't explain it. But if there's a hell, I think I visited its suburb.
My big thing is missing out on what's going on. Not being included. Life rolling on without me. I want to be included in the daily lives of my peeps. Being dead is the ultimate sideline. The ref taps you out and you stay out...forever. I have so much I don't want to miss. I am too interested. Too aware. Maybe when life gets too dull, too hard to follow, too tiring to pay attention to, maybe if I reach that point death won't be so bad. I hope. Again, I don't know.
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