My Husband, My Life, My Love, My Family, My Cancer
Comments
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Booboo, I’m happy that you’ll have this treatment free time to feel good, like others have said already. It’s hard to hear it, but it makes sense (and is compassionate) to stop putting you through awful treatments. DH and I enjoy Disneyworld too, but my first time visiting wasn’t until age 56, I lost a lot of time. Last time, in 2017 we were chased out early by a hurricane and haven’t gotten back yet. I hope your Christmas trip is a great one. And I hope you don’t hesitate to reach out here at any time. Mel’s living room is full of your friends
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booboo - I hope you have many good days ahead. Hugs and prayers.
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booboo, dang, I get it but dang. I hope you feel great off treatment for as long as possible.
emac, sorry to hear about how you’ve been sleeping and I can’t even imagine. I don’t function well on less than 6 hours, I hope you find it magical.
Not much here, just a follow up brain mri on Tuesday to see how radiation is working. Then, more packing.
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Laurie, I am glad your MO is synced with what you want for yourself. I am sorry you were so sick with Abraxane and certainly sorry nothing else will likely help. Feeling physically better for no matter how long it goes will be better mentally and physically for you. I do hope you have a good palliative team taking care of symptoms that may crop up but I want you to know I will think about you all the time and remember the kindness you have shown me.
I do hate it when sisters/brothers too get to the point that there are no feasible options that offer qol for people since that is what most of us are striving for. My heart is feeling heavier with this news about Laurie but also happy that she will get time with her family with a better qol.
For myself and my values, I am very limited in what I would do to stay alive as well. I have gone on record that I will not do another systemic chemo because being by myself, I don't want to handle SE and feel that I have had six mostly good years and qol so that is a lot. No children or anything and I know my family will have each other. It is good to understand what are and are not willing to do.
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Mae in your pocket for your MRI
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hello ladies. Mara nice picture darling.
Thinking about BooBoo, kitty hope you’re a little better today. Mae~ good results are my wish for the radiation working ! Hello Rosie red and Rosie. Hi Candy! Sondra! Karen! Tanya hi sweets! Goldens, Dodgersgirl, moth.Shetland,bliss let’s hope she’s just recovering and needs time. Worrisome when we disappear.
Thinking of you all!
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I'm feeling much better today, I wandered around the shopping center and did a bit of grocery shopping and dropped in to see my daughter at work. In your pocket for your MRI Mae. I hope your new bed improves your sleep emac.
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Boo - you strike me as a lady who will go do what needs to be done and also do what she wants. I wish you well as you pass the end of treatment threshold and into the (relatively) unknown and have just as much time as you need, with as much peace as possible. Do let us know how you get on with your adventures!
Its HOT here but I had a really nice day out and lunch with Other Half at an actual restaurant for the first time in man, I can't tell you how long. We had booked but he got there before me and chose to sit outside, which was the right choice not only for the air flow, but the waiters were much more attentive because they could see all the tables. Must have walked five or six miles today, sweating the whole way. Heat is supposed to break later this week with thunderstorms - on the plus side the bedroom and office don't get very warm as they are on the east side of the house, but the kitchen is another story entirely. Grilling tomorrow and we got a special basket to grill fish and other flat things like veg.
Hope everyone is having a good Sunday!
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Mel— waving back to you.
Still on oxygen 24/7 (sucks) from pneumonitis plus pulmonary embolism. Really limits life. At the moment my cancer appears to be stable which is good.
BooBoo- hoping you have some quality time. Looking forward to hearing about a Disneyworld Christmas trip!! We used to go a couple of times a year but I think my Disney travel days are behind me. Love it there at Christmas— so pretty
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DodgersGirl- Good to hear from you, been a while. Sorry you are still having a rough time with pulmonary issues. What treatment are you on now for the cancer?
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Laurie sad to hear that you got that news. I can't even imagine what that feels like but I do have those sobering thoughts while I try to put cancer on the back burner and have some Qol. I'm happy you've got plans for seeing the family and Disney. Please message me if you feel up to meeting? I have appt.s Tuesday and Thursday but otherwise free.
Living room hugs before I plop down. And yes Candy and Mel just feeling crushed by what others are struggling through right now.
Tanya
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Dodgers girl, I am also happy to see you and hope you can get off the oxygen soon so you can enjoy the stable more. I am sorry others are struggling with their disease so much. I hope it can settle down soon for people.
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Booboo, I'm so sorry to hear your news. I hope you have many days of feeling better off treatment.
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Laurie, I am filled with sadness and inspiration for you. I hope you run and fly and live the living out of life. I echo so many here that we hope you will check in and fill us in on all the great things you are doing. I hope you feel better off all the drugs and I love that you are taking the reins on your treatment and your life. I agree with others that I just hate cancer and the grief that it causes.
I did sleep better last night not rolling into the center of the bed and crawling out of a hole in the morning. Oddly enough the adjustable is great for reading but in terms of sleeping I still found myself wanting to be almost flat anyway since I'm mostly a side sleeper on my good hip. Candy, you are so right. These aren't cheap and it feels extravagant since I am pretty frugal normally. I think that's why I was so hesitant to check them out. I live by my mom's advice to make sure you buy quality on important daily things like underwear, shoes and bras. I can't tell you why she zeroed in on those things but I think mattresses probably fit into her logic that way. I am already signing up for the overtime shifts though.
I can't tell you all how beautiful the weather has been here. It was warm and humid this afternoon and then we got an evening rain shower. I thought I would post a picture. It never really captures on screen as stunning as it is in person but the clouds on the orchard across the street are amazing.
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BooBoo - I try to imagine what it took for you to write those words. I am glad that you have medical care that is willing to hear you and support you in your decisions. From here on in support and respect for your chosen path is what you will need from everyone. I am so sorry, but pray that in all things peace wraps your soul in a quilt of comfort. You are wise and know exactly what you need to do. You know the goodwill and love of everyone here is with you all the time.
Emac - you are unusual! Most people who get new beds sleep terribly for about a week. Change, even a good change, often messes up sleep patterns. I used to sell mattresses and would warn people to not judge their new bed until they'd slept on it for a week. A few people make the transition smoothly (as you did) but many more hate their new beds and worry they made a big mistake. For a week. Then, aahhhhh, all is well.
Mara - you are so cute! Like a pixie! You should be a model. I admire your perky haircut. Perfect on you!
Mae - pocket for the MRI and packing and I picture you stuffing crayfish in your luggage.
Dodge - hello to you! Sorry you have been down and out with lung problems. Hope you oxygen your way back to feeling well again!
I am working on a local fundraiser that I started to organize about 3 months ago. It was sidelined by that stupid uterine cancer debacle that knocked me on my ass for the month of April. But I picked up where I left off and while it may not amount to much as a fund raising effort, it is something I have wanted to do, an idea I had, it was waaay out in left field, but it is going to happen and it's something I can cross off my list. Wanted to do it, almost got it done. So, that's something.
To everyone, hugs and strength and peace and joy.
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Candy— I am taking Verzenio and Exemestane pills and monthly XGEVA and Fulvestrant shots for cancer. Taking Eliquis for PE.
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Runor— best of luck with your fundraising plans. So cool!!
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Mara51506– love the new aviator. Such a pretty photo.
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reporting for any needed pocket duty.
BooBoo💜
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Thank you everyone for the complements on the photo. I appreciate them all.
Laurie, still thinking of you and I will keep thinking about you as well.
Pocket duty for anyone who needs it.
Today was cool and rainy. I did two 30 minute walks and even with the umbrella, got pretty wet. I still enjoyed them. Planning to pick up some burger patties. Going to grind those up to use alongside the beefless ground. Also giving up the white english muffins and excessive peanut butter for a while to see if I lose some weight with it. The beans are carbs but they are low glycemic index and the health benefits outweigh the bad. Peanut butter wise, I figure I can snack on a teaspoon at a time for 30 calories and all the yum. Just want to up the protein and avoid the white bread or bun that is high glycemic index. Gotta figure out a strength routine too.
It was weird shopping in a non essential store. Our malls are not open unless the store faces the street so it limits stores inside the mall. I did buy some capris and it was nice to get stuff that was not just food type items in a physical store.
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Dear Friends,
I am starting to feel better physically, but trying to get this last round of chemo out of my body. Wow. Never knew it could be that bad.
Anyway, I don’t feel like much has changed other than no more chemo treatments. I promise not to disappear on you all. I’m going to try to post until I can’t any longer, and I have no idea of when that day will come. I must say I am not the least bit afraid. I am more curious than anything else. When you think of the millions of people who have gone on before us, death can’t be that bad. Who knows? Maybe I’m wrong. I’m just choosing to believe in a nice gentle goodbye. You all know I have a very strong faith, and although my belief in God is real, it does not mean that I know it all. I’m trusting that I will have some time before I go to enjoy my family and friends.
I have not officially been turned over to hospice yet, and again, not sure when that will happen. I was told that once I am under hospice care, I have to report in to them. Not sure yet what this means.
Anyway, thank you for all of your beautiful responses. I’m enjoying every day as it comes.
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Laurie - oh I am sorry that this is happening. I wish so you so so so many excellent days ahead
DG - that pneumonitis sucks so much. What an absolute drag that this happened to you.
kittykat - glad you're home and enjoying your new car
candy - thanks for keeping us utd on scans
mara - lovely avatar!
I had chemo on Thurs, was kinda flat Friday and Saturday but still managed walks and puttering. Yesterday I was doing quite well and doing so much stuff around the house that for the first time in ages almost hit 10K steps.. It sucks that I'll probably be coming off this treatment just when I've figured out how to cope with it.
I've been doing stuff around the house, still doing the online agility class with Olive, still learning to make instagram reels. This is essentially my plan for the rest of the week as well, plus a trip to a plant nursery as I need a couple things to fill holes in the garden & on the deck.
hugs everyone
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Dodgers- Wondered about your current treatment since you said you had pneumonitis. The CDK's can cause that and thought maybe they took you off them with that diagnosis.
Booboo-
I too am a Christian, but I fear death. I know I shouldn't. I hear of people in my church, much older than me, in their 80's and 90's, that say they are ready to go to their new Home. But, I am not ready. I know my future Home is in Heaven, but I don't want to go this early. I read your post and hear your faith and bravery. May God bless you. Giving you a hug from here. 0 -
Happy Monday friends! We had friends visit from Ohio this weekend. Susie was my hubs nurse for 9 years and we became great friends. If hubs wasn’t on call, Friday or Saturday nights would find us having pizza, drinking wine and playing games. Miss them sooo much. Susie is like my other dear friend and brought all this food for the weekend. My mother always said it’s better to have one true friend than a handful of fair weather friends. We’re blessed that we have 2 couples that are the bestest!.
The unfortunate thing is when we went to bed last night my husband took his bp/pulse. Said he felt out of breath. Damn a-fib is back, about 10 days after a 6 hour cardiac ablation surgery. I thought he was going to cry. His pulse initially was 180 and I kept asking if he wanted to go to ER. You all know how these big boys are. No ER trip🙄. He kept taking his vitals over 30 minutes and his pulse dropped to 100. He will call his doc today. Pulse was 110 this am.No idea what next step is. So we are supposed to go to our best friends daughter’s wedding in a couple weeks. It’s in Denver and I am going to have to try to persuade hubs that it is not a good idea to go if he’s going to be in tachycardia. The last thing I want is a trip to the ER in a strange town when everyone else is involved in wedding prep (it’s a small wedding that was rescheduled from last year). Plus Denver is mile high city and the altitude will be even harder on someone with cardiac issues. Wish me luck in my arm twisting.
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Oh Goldens sorry to read this.
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Goldens - good luck with your Hub. I hate that feeling of tensely standing by, watching, as things go wrong but the other is, no, no, I'm fine. But it sounds like Hub is getting tired of all this craziness himself. I am sorry both of you are in this mess.
Candy, I also fear death. When people tell me they don't, I kind of think they're bullshitting. I did make a post saying it has to be okay to die, because I believe when, in the course of treatment we make that decision of no more, no more, then that decision MUST be okay and we must be allowed to make it without burden of guilt of what others expect from us. But still, I am afraid to die. I will miss out on so much. Not being included upsets me now. I want to KNOW what's going on with everyone. Being out of the loop distresses me and being dead is the ultimate out of the loop! I have not yet developed the grace I hope to in the matter of my own death or that of ones I love. I have failed utterly in this regard. I think you are brave and honest to say you fear death. That is a fair and real statement. I fear it too. A lot.
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Faith, bravery, and grace. That is what I pray for, for me.
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I am not sure about my feelings of death itself. I have clear ideas of what I want and don't want if Herceptin fails, no other systemic chemo etc. Seeing my mom in her last day, she had had a stroke. She knew we were there said my boy to my older DB and love you to me. She was well taken care of and in no pain or distress. She just slipped away when my older DB told her she could rest now. That sounds peaceful.
I will say that I was more scared of death but I also know there steps on the way to hospice and I am not currently there so I largely don't think ahead that far. My family knows my wishes as well. We had that conversation long ago.
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Candy- the treatment that caused pneumonitis was Afinitor.
Goldens— hope things are settled down with hubs. I am going thru something similar with my hubs. He had open heart surgery while I was going thru chemo during original treatment before MBC. Since Aug 2020, hubs has been to ER 3-4 times with tachycardia where pulse continues to raise and he feels like he is having another heart attack. With CoVid, it’s been really tough cause I couldn’t go with him. Watching the ambulance leave and not knowing if he is coming home is tough. So far, they can’t stent where the main blockage is so he has had his meds tweaked over and over. I bought him a KardiaMobile so he can test for a-fib and tachycardia from home. He tests daily and more often if needed. Then takes tracked results with him when he seeks medical care. Will keep your family in my prayers.
BooBoo- wish I had comforting words to write. Feel inadequate right now. Really hope each day improves as chemo poison leaves your body allowing you to enjoy each day provided. Hoping you are still sharing with us for a long time. In your pocket.
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Goldens and Dodgersgirl, I hope you DH hearts will settle down soon.
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