My Husband, My Life, My Love, My Family, My Cancer
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Yay on stable Goldens. And congratulations on Getting it over with. I love your artwork looks beautiful. I love sunflowers!
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intolight - sounds like you had a wonderful trip and got a boost of confidence in traveling with MBC and new limitations! Perhaps time to start planning the next trip? :)
goldens - well done for stable, and some very lovely fall decorations. I love the pup in the truck!
Ive seen a lot of questions from early stage folks on the Reddit breast cancer thread asking where they should donate and unless someone else has already chimed in, suggest Metavivor or a small local charity helping women with rides or small financial assistance. Very interesting to see that quite a few women either know not to donate to Komen or would rather not donate to Komen.
Starting to consider going on long term medical leave in January, the work situation just isnt tenable with what I need it to be (it causes anger rather than moderate distraction which is… not good). I need some space and time away from that place to recover from this year and decide what happens next. Only one source of misery and uncertainty at a time is allowed and unfortunately cancer claimed that spot!
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Hurrah for stable, goldens! Beautiful artwork!
Sondraf, I'm on extended leave (which is going to become permanent next year), and while it was weird at first, I definitely notice my stress has gone way down. Not dealing with the bs at work has been rather nice. If you can do it, I highly recommend it.
Candy, I like what you said about basically reminding people that yes, I'm still here, and yes, I've still got cancer. I struggled with "should I say anything", but ultimately decided to post something. The response has been positive so far, people appreciating a bit more detail about the reality of living with MBC, and sharing the link to Metavivor.org. But there is always the feeling that I should just be grateful and not say anything...I am grateful, AND I'm going to say some shit. Both are true.
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Congrats Goldens on stable!!!
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@goldensrbest Hurray for stability!! Your crafting/artwork is so beautiful. Sunflowers make me and I'm sure a lot of others smile. Waving hello to everyone.
Finding the support from this group is my blessing to help me walk thru this MBC diagnosis. Here are a few things I had to learn along the way. 1. Just because you are Stage 0 does not protect you from recurrence as metastatic. 2. Just because you had a indolent form of breast cancer does not protect you from recurrence with a more aggressive form of MBC. 3. Just because you have a double mastectomy during the first occurrence, does not always protect you from recurrence as metastatic. 4. Mental health issues such as anxiety, depression and/or panic attacks can show up with this diagnosis. I feel all patients should be assigned a mental health counselor that they may wish to utilize. 5. Advocate for yourself. 6. Hope for better and gentler treatments, more funding. 7. Keep the faith and hope.
Laurel
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Goldens congrats on stable. Paintings are wonderful.
waving hello to the room
tanya
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Goldens Congrats on stable, always glad to hear good news! Your artwork is gorgeous your so very talented.
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Goldens, yay for stable! Intolight, I'm so glad your trip went well.
Update on chemo. I don't know if I wasn't told or if I completely misunderstood that this Taxol is indefinite. Because I was scheduled for 12 I thought that was it. Apparently it was put in place to get the fastest stability for my breathing while we fought with the insurance to get the Piqray going. Ironically enough, the insurance may stop paying for Piqray now so I have to call next week and see what's next because I only have a week and a half left. So, that was a blow. I discussed with my MO that right now I have enough quality of life that I will continue the Taxol but extend it out to every other week instead of every week to mitigate side effects. I guess there is no specific protocol, it can be extended or made more frequent based on my quality of life goals and how aggressive I want to be. Does that sound weird? Anyway, I will have another CT of the chest/abdomen/pelvis in November sometime and have the brain MRI coming up.
I had a fun afternoon yesterday with a couple of friends. We went to lunch and did a drive out through the hills looking at the fall colors and stopped at an old covered bridge. It was great to visit and see them and get out of the house for something other than errands.
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Emac-I have found it really puzzling that you are on both Taxol and Piqray. I would have thought they would have put you on Taxol for 12 weeks to beat the cancer down and then on Piqray for maintenance. Perhaps this is why the insurance company is objecting? Taxol is probably cheaper but it seems like you have the chance for a better quality of life on Piqray despite all its crazy side effects. Glad in the midst of all this craziness that you had a fun afternoon yesterday. Those do wonders for us.
I also got good news of stable scans this week so I am exhaling along with others of you.
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Congrats on stable, Chicagoan.
Emac, I too would think the Taxol was to knock down the cancer when you were having such severe issues, but then would go to Piqray for maintenance. You were taking Piqray WITH the Taxol?? But what do I know. I read and watch seminars and still feel like I don't understand all this.
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Chicagoan, love more stable results! I have a PET on Monday and am hoping I can add my name to the stable list. Right now I am struggling through Faslodex shots yesterday…
emac, so happy you had a good day out!
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Goldens, I am doing the happy dance for you. Enjoy your crafting.
Threetree, the huge grief was done long ago, each year it is easier. Last year I decided to celebrate her birthday buying myself treats and just doing what I want. It does not need to be sad or a forgotten date. I also don't post to facebook, this is private. Had McDonalds egg mcmuffin for breakfast but taking it easy today as well. Might rent or watch a movie.
It is true that it stays with you. Usually in her saying knock it off when I am having a depressive day. Her voice is in my head saying get on with it. It works too.Candy, I feel alone as well and there is no one celebrating me but you guys. My brother and wife love me and got me set up here when she died but that was because she asked them too. I see them once or twice a month and that is enough. Everyone here, including you have been good for me and no one expects rah rah or you to say you're fine. In your pocket as well.
Sondra, I had to go on disablity a year after original dx due to brain met. I was working until it presented and then went off, originally on leave but once I decided I was going to die, I did not have the patience for work myself. Definitely could not do it now Once the brain was looked at, operated on and radiated twice, I just could not deal with it. Take my disability and budget out of that and proceeds of a house sale sit in trust. I do surveys or games or TV ads for a little money.
Irishlove, my first dx was DCIS but that quickly changed to Stage 3 until official Stage 4. Although there is a part of me that hopes others can be done with cancer, I really don't hold out hope. Just keep my mouth shut about that and wish them the best.
So as I said above, had McDs breakfast, not sure what is for lunch, got my TV making money with lots of ads. Will probably watch you tube and South Park among other things and if there is a movie I want to see, I will rent it. Still got plenty of cake for days to come as well. Not singing happy birthday but I told that when I got out of bed.
In everyone's pocket who needs me, have a good day all.
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Chicagoan - 🎉🎉🎉 for stable! My greatest wish is that we all get those results🙏🏻🙏🏻.
Emac - I agree that it is so nice to do something other than struggle with this sinkin’ disease. Getting out for a fun day is the best. I’m grateful to have grandkids nearby. And a wonderful DD and SIL. The kiddos have so many sports that we attend. Gives us something to look forward to. 10 & 12 yr old GS have football playoffs today. Weather is nasty. Dark, cloudy sky, possible rain and 25 mph winds. This grandma is staying indoors today. Grandpa plans to go. My bones started screaming yesterday when we had over 24 hours of rain. Whispering Arizona, Arizona in my ear - lol! I keep telling them ol’ bones that just wait, winter is coming. Had been using lidocaine roll-on but no longer effective so back to generic Voltaren gel. Apparently there is a stronger version by rx so I will look into that.
Hope that everyone’s weekend will be sunny with all our favorite teams winning! Go Blue and Go Lions!0 -
@intolight In your pocket for scans on Monday. @chicagoan Yay for stable. May you have many years ahead of stability. @emac877 I don't think your crazy at all for doing the lowest dosage possible to contain cancer and have quality of life. Here's hoping that insurance is not problematic and you can find the right treatment plan. @mara51506 It is so genuinely touching how much you love and miss your Mum. Mum's know best and still hearing her in your memories giving you strength to carry on, is just the encouragement needed. The cake sounds delicious.
Waving hello to all in the room and picturing fall colors. I miss our mountains of NC at this time of the year. In pockets for all who need support.
Laurel
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@chicagoan Yaay Congrats on stable scans, keep the good news coming ladies!
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Chicagoan, hurrah for stable!
Intolight, in your pocket for your scan on Monday.
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Hello ladies~I’m having a hard time. I received word that my mother had a breathing attack and was found blue and not breathing. They told me it would happen again and that it would not be long. I didn’t realize how hard this would hit me. My mother has always been in my corner always there for me. I am broken hearted to say the least. It will not leave my mind. She is in Mississippi and I am in pa unable to travel. I’m destroyed inside. Life is hard.
congrats Chicagoan on stable results
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@intolight pocket duty for tomorrow.
@Chicagoan congratulations on stable.
@emac877 Im happy you got a day out with friends. This is a beautiful season.
@Mara i appreciate all of your sharing. You handle The loss of you mom with such grace. I can tell by your quotes of her advice that she was a wise loving mom. What your brother and sil does through his promise or love is substantial.
I went for a walk yesterday with grandsons and fishing pole, scooter and bread. We did put the line in the water and I prayed he wouldn’t catch anything lol. We fed the turtles bread and just enjoyed the day. Faslodex shots and blood work Tuesday.
take care all
Tanya
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Mel- I am so sorry to read your Mom is nearing the end. And that you cannot be with her. My thoughts go out to you.
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Mel, I am so sorry about your Mom and that you cannot be with her. We are all in your pockets, both you and your Mom. It definitely is hard not to be there with her. Sending my thoughts your way, all day.
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Mel, I'm sorry about your Mom. Hugs and prayers for you and your family.
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I had a good day yesterday, ate whatever I wanted from McD's breakfast down to a largish piece of tuxedo cake, still have a ton of it left. Might cut into some smaller pieces so it is not overwhelming.
Laundry ready for the dryer and I am making breakfast. Going to make up rice, beans and wheat bran, add some garlic. Add an egg as the beans will be chopped up and the eggs can be whipped up, add those things to the pan and heat everthing through with the rice.
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Good Morning all,
I wasn’t able to read and catch up with you since coming back from Florida. I was wiped out just from being away and trying to keep up with all the young ones😉. I did read that there have been positive scans for some here and that’s always happy news to hear “stable”. That’s great to hear that treatments are doing what they’re supposed to do and fighting progression. Congrats to all who got good scans‼️💗
So tomorrow I have my monthly visit with my Oncologist, bloodwork and the shots of Xgeva & Faslodex in my butt and arm. Not looking forward to them but it is what it is. It was great to have a week off the Verzenio, but have been back on the treatment since Tuesday. I just want to say hi to you all and will get back to keeping up with the goings on in this wonderful supportive forum. God bless you all as you deal with this disease during these troubling times. Have a calm and restful day without side effects and pain.🩵🚽🧻😬
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Mel, Sorry to hear about your Mom. No matter when you lose your Mom it's always too soon. Hugs for you and your family.
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Oh Mel, so very sorry to hear about your mother, and your unfortunate situation in not being able to go see her. Our mother's can be our rocks in hard times and it is just so distressing when they have their own hard time (understatement in this case) and there is nothing at all we can do for them. My heart goes out to you and I wish you all the best.
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Oh, @micmel… we are so sorry to hear about the loss of your mother. It's hard to lose a parent at any age. Warm hugs to you. ❤️
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Micmel-So sorry to hear about what is going on with your mom. I know you would love to be there with her but you just can't. I hope she has a peaceful death and that you are also at peace with it.
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Mel- sending you warm gentle hugs and just know that I am thinking of you and your family. I can't imagine.
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This is my friend Stephanie and I at this cool historic covered bridge near where I live. We were struggling to get the two of us and the bridge in the picture and another friend thought that was pretty funny.
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