My Husband, My Life, My Love, My Family, My Cancer
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My blue and silver tree!0 -
P.S. Micmel, I LOVE the Cookie Monster video! One of my absolute faves! I am THE WORST when it comes to Christmas cookies!
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Funny how the names are so different in the US than in Canada. AA Affinitor and Aromasin are Extemasane and Everolomus.
I am not sure if Hobbes Nanson was ever on this thread but if she was I would like to pass on that her daughter let me know yesterday that she died in the oncology ward here in Victoria. I saw her in one month ago and she did not want visitors after that time.
Blood work today and paclitaxel tomorrow.
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So much to comment on. Thanks for letting us know about Hobbes.
Yes I'm in a tough spot right now. But, with help and prayers from all of you, I will move forward. AA Aromasin/ Afinitor are the brand names for evermolious/exsamestine. EE. I know those are spelled wrong. Afinitor is another targeted therapy but not the same target as ibrance. There is a thread here but it's not as active as it used to be because AA is much older than Ibrance. It does not have a very good track record especially compared to Ibrance. I am determined to try it even though I don't have much confidence in it. Also some of the SE sound horrendous.
I am a Zebra. Do any of you know what that means? It comes from a saying used by docs teaching their students. If you see footprints in Texas, think horses not Zebras. In other words look for the most common things first, the look for the rare possibilities. I typically fall into the rare category in everything. SE from drugs, Test results etc. You get the picture? So, I am hoping AA will work for me and I won't have the typical SE. Only two women on here have gotten more than three months from AA. I want be atypical= zebra.
Yes, my goal for the next two weeks is to focus on Christmas and my kitchen remodel. But, I'm already having trouble with that. This morning I started thinking I should call my MO and ask her if she's going to want a BX. If so does she want to do it soon or wait till I see her on the 28. I do hope she wants one because my tumor might have mutated, it might have different receptors, therefore it might respond better to different types of drugs.
Ill write more later.
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Well, I just got all in my feelings and blessed my daughter out. She really didn’t deserve it. It really is a matter of me being pissy.
She has this one friend/bridesmaid that I don’t care for. This girl recently got married, and because of this she isn’t allowed (yes, I said allowed) to do things anymore. For example, she isn’t allowed to go for a girls weekend trip for my daughters 21st birthday or to her bachelorette party. Why? She might see other guys while gone. WTH?
Caity’s 2 BFFs (this girl and another) are very talented in art and calligraphy. The other friend is doing the wedding cake, and this girl wanted to do Caity’s invitations. That was nice, right? Well, she sent Caity some samples the other night. The heifer didn’t design them. She went on Etsy and sent examples to Caity to choose so we can order one with printing rights. THAT’S her idea of “doing invitations”.
Now about me - I've been trying to quietly sit back and let Caity have whatever she wants (she's very frugal and very considerate), but it seems that anytime I've had a suggestion or opinion she hasn't been interested. Now, in all honesty, her choices end up being perfect, but it would be nice to sometimes be told "that's not a bad idea. I'll think about it." Even if it's a lie! But she's too honest and pretty much just says, "yeah...no. I don't like that." So I am truly trying to just be a presence and not interfere.
Anyway, remember we ordered 3 bridesmaid dresses to see how they look/fit on the main three? They came in today. I personally want to see them on each girl. I paid for them after all. Well, this girl is just “so stressed out” she’s not sure she can come here to try on the dress. So I overheard Caity tell her “my mom really wanted to see them on everyone, but if you’re too stressed to come here, I can bring it to you”! I just lost it. Cried and everything. It was simply the straw that broke the camels back I guess. I hate being so sensitive. And now I feel mega guilty because I hate that I just blew up on her. I’m such an ass.
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MJH~You're putting me to shame. I totally agree with you that women are the memory makers. For sure. I have done nothing. Not one stitch of decorating. I am just too exhausted. I am barely going to make it with the presents and wrapping. We will be putting up our knee high tree and that’s all I can do. I don’t like the new normal of anything since diagnosis. Everything was steadily on a tray. Then the tray shifted and my life went tipping over and knowing my own body isn’t safe for me to live in it. Turning on me. Since we only get one. body-that really sucks!
Marian~ I am sorry to hear of a fellow sister passing. I am not quite sure if she posted here or not. But it still saddens me the same. I hope her sweet family can know there is no more pain anymore. Even I await that day! Everyday is a challenge!
Waving to Gracie!!!! Hello my dear!
Much love to all
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Holy cow, Shelia, You are not an ass. I don't understand how you have kept it together this long! Here you are, dealing with a horrible illness, planning your daughter's wedding, putting up with a bridesmaid whose marriage sounds scary to me ( if her husband can't trust her to go on a girls' weekend without finding a new guy, how much trust is there? What kind of future do they have?), normal day-to-day life, holidays, and on and on. Personally, I think you are doing great. There are times when I am an emotional mess, and my DH has had to adapt to this crazy woman he lives with. I sometimes cry at the drop of a hat. Little things can set me off - a Christmas Carol, a movie, the news, talking about my children and grandchildren - anything! I blame it on medication and fatigue as well as stress. I don't know if those are legitimate excuses, but it's the best I can do. I am sure that you and your daughter can talk and make things better. I am sure that she feels like she is under a lot of pressure to get things done. She wants everything to be perfect. We are here to support you.
Hugs and prayers from, Lynne
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Shelia~ you are not an ass. Not even close. You’re allowed to feel overwhelmed and your opinion does matter. When I was planning with my daughter she didn’t even want to deal with “other people’s issues “ when planning her wedding. She didn’t have any. Boy were we glad for that. Girls are witches and whiners my mom always said. I tend to agree with her. They are drama queens these days. Just simply tell her that you dreamed of doing these things with her. Also, remind her gently that you’re ill and doing all you can to support her. I made sure that if I was paying for it. I was consulted.. after all It wasn’t my first rodeo. Keep offering your opinion. Let it roll when you have too. Just tell her hey. I got a little overwhelmed.. I’m dealing with a lot of emotions. It’s a big deal planning a wedding. I’ve been through it. Big hugs to you ! Sweet Sheila!
Grannax~ damn liver !!! I am sending every positive thought I can muster that this works for you. I agree about the biopsy. It could have changed. May as well check everything. To be extra safe and make sure. The more available the better! I am hugging you our superstar! One day at time my Sister! I fear the day ibrance fails for me.
Marian~ you taught me something today. Thank you! I learned about AA! And the other name for it. That’s why I love you ladies. We learn from each other and lean on each other.
I’m really starting to worry about Parry. 😞0 -
I’m worried about parry too. She sent me a message when I stsrted ac about her experience and was so sweet and helpful. I do hope all is ok with her!
Skit
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I’m also thinking about kaption. Has anyone heard from her or another, about her? In my thoughts.
Skitz
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good point!! Haven’t seen her either now I’m beginning to worry. Skitz. You’re a sweet woman!
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MJH, love those Christmas decorations. Glad you are doing well
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Minnie~ I agree im actually jealous. I’m way behind. By now I’m almost done. Not this year. I have to say my daughter really did help a lot with that in years passed. I kinda miss that. Ok I’m over it.. I enjoy the quiet house and lower bills lol.
I love the snow shoes. How rustic and old fashioned! Sweet times then I am sure. Another chilly night tonight. Had six more gifts delivered today so I’m getting somewhere! Ugh
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Dear Micmel,
It hope you are feeling better and have had good rest. I learned through this illness how precious energy is, and you are spending yours on what's important. Giving is part of the beautiful aspects of Christmas. It's not for the materialism, but for the demonstration of love and generosity. It honors the first gift giving of Christmas: the three Magi's gifts of Gold, Frankinsence, and Myrrh for the Holy child. This is where you have put your precious energy, and that is beautiful! Besides, what a glorious, beautifully decorated reception you gave your daughter earlier this year.You put your decorating talent in it, and it was awesome!
Ladies, your photos are so lovely. I love the blue and silver Christmas tree! I decided I just wanted live Norfolk Island pine trees for decorating. I bought two. They are very young trees, and make nice houseplants year round. They can't hold up the weight of a lot of decorations, so we just hung our very favorites.
Much love,
Miss B
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It’s always so nice to see you Miss Bianca.😃. Thank you for remembering all of the work and my heart that I put into the her reception. It was a blast, I really loved every second of it. The only difference is I wish my sister and I had reconciled a little earlier so she could have been there. My nephew also. He’s a great young man.
I texted my father, told him the chemo was making me exhausted and my white counts were low. He told me to take care of myself and not over due it. Then my step monster chimes in that my great nephew has the flu and he was there the day before. I was actually shocked that she even cared that I could get sick. I don’t think I’m going to go until next week. Maybe Tuesday if I’m able. I’ve done. Nothing today. I’m already ready for bed. Sucks ! Much love to all ~M~
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Hi,
Hope everyone is doing ok today. I’m trying to keep up with everyone, but this new medicine has me sleeping all the time...and it being the holidays & wedding less than a month away there is so much to do when I am awake. My body seems to slowly becoming acclimated so that’s good. Latest CT showed Lungs look worse, skin mets are just wreaking havoc (breast is more like something from a horror movie I’m waiting for an alien to burst out or something) and I can’t hide it under my shirts or bra anymore so thank goodness it’s sweater season here, brain MRI showed brain is still clear and the dural ‘swelling’ has decreased a tiny bit, too small to specify. Still not convinced it’s just swelling, but not too much to do about that I’m not already doing.
Hugs to everyone and hang in there! Merry Christmas and Happy holidays
enjoy some eggnog or those yummy butter cookies or w/e your favorite holiday treat is0 -
My new plan. My PET is this Friday, my appointment with my MO is this Monday. I'm sure we will talk about results and hopefully schedule Liver BX. One day next week would be good. Let's say it takes a week for receptor studies to come back, maybe longer. Either way I should be able to start my new TX by January I.
I actually rescheduled the PET myself. Then wrote an email to my MO reminding her that she had told me months ago if I ever had progression, she would want a new BX. So, she read it and had her nurse call to reschedule my appointment for Monday.
It sounds like we're on the same page. I sure hope so. I was bold but careful in my email. Maybe my new celebrity status has given me more boldness. Who knows?!?! Ha
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Parry~I am so glad to see you honey. We were starting to get really worried about you. But how great is it that you're doing wedding things?. I am sorry that you're having issues with damn cancer. It's so annoying. It should know the bride doesn't need that crap to deal with. Like no!!! Thank goodness your brain was clear. Omg at the fact that your wedding is less than one month. No wonder you have been so darn busy to even think straight. That's so amazing. Soon you will be a newly wed! Hugging you and so glad to see you.
Grannax~ I don't know how you're keeping all this straight. I think a new biopsy is definitely the way to go. I believe that my next tx would Most likely be xeloda. But I am not really sure of the side effects. I'm just hoping ibrance can go another 25 more months! It's definitely daunting for us all everyday and every scan. We are holding onto you tight! We love you!
Much love ladies ~M~
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glad to hear from you parry! Not glad about the lungsand skin mets. Was the scan before the new medicine or after you started?
Grannax - good idea to see if your status changed. Every time I ask my dr says no bc what included giving you next would work either way.
Micmel - you need to get over the ear infection and soon so u can have a good Christmas. I fear getting sick bc it takes us to long to get better. I wonder how long the longest ibrance user has been? I did get 18 months and was happy that long so you Are rockin it! Stinks you did get good results on last scan and u can't party like a rock star!
I was hoping and dancing around for about two min last night. My daughter said what is wrong with you? I said I have no idea but I'm tired now from it.
Sleep well all
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Skitz~it is a lingering thing for sure. I feel a lot better but I do think I could use another round of antibiotics to really knock it out. The things have a habit of coming back on my week off. It sucks. I ve been very happy about the scans for sure. I want to feel Better though. I know we all do for sure. I’m starting to be an insomniac for sure. Or a night owl. Whichever applies. I’m watching breaking bad. But I’m getting tired. Goodnight ladies. Sleep tight. ~M~0 -
Grannax, I’m glad to hear everything is in order and the new plan is in the works. I hope your liver bx goes smoothly with now new surprises. New year new plan...that how it goes sometimes.
Micmel, thanks
it’s hard to be that happy carefree bride tbh. Some days I don’t know why my fiancé wants to marry someone with stage 4 cancer. We have been together almost 10 years. We don’t need to get married to be more committed. Not that I don’t want to. For me it’s something I always looked forward to. I just have this cancer guilt and trying to plan around treatments and how I’ll be feeling is rough. Plus we are doing 2 weddings in 1 week so it’s extra crazy. Hope you are feeling better! Skitz, hi darling
I feel very cared about here and hope I didn’t worry anyone too much. The CT scan for chest was before and brain MRI after. I hope it’s doing something. I sent a email to MO about the skin mets (I hope none of you ladies ever has them they are just terrible) and how much pain and destruction of my breast it’s causing. She said my new Med works slowly so we don’t know if it’s working yet. Only options are to switch to chemo, see if I can do more radiation (already had 30 rounds previously), or just keep on with this regimen. It’s too extensive for surgery and skin grafting so that sucks. Ugh I’ve becomd such a complainer! Funny about the dancing thing. I also get these random bursts of energy and think oh I can clean the whole house right now...a few minutes into sweeping I’m out of breath! Gotta relish the silly or productive energies when they come I guess :0 -
Parry~ I am so sorry you have to even say the those words in the same sentence. You are going to be a beautiful bride my sweet and he wants to marry you, because he loves you more than anything and he wants to call you his wife. I'm just damned angry at cancer 24/7 for harming such good people. I have never never hated anything so much. Ever. I'm so glad you're back. We missed you and of course you're cared for here. You're a part of the the fu cancer team, that you named. Much love ~M~
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Grannax- I am into my 6th week of A/A and have lost about 13 pounds just since starting this regimen!! I was spoiled on Ibrance/Faslodex for 38 months having so SE at all, but now....not so lucky it seems
. Every single bite of food gives me a stomach ache which is quickly followed by the big D (obviously this makes me not want to eat). I was hoping it would improve, but doesn't seem to want to so I sent my onc a message via the portal this morning to ask what I should do. Anyone else have this experience? Maybe just an OTC anti-diarrhea medicine will help, but I don't like to take anything without the blessing of my onc. I will also be having a biopsy soon to find out what is going on with my sinuses. My CT scan indicated: Complete opacification of the left maxillary and frontal sinuses with near complete opacification of the anterior ethmoid air cells. The posterior ethmoid air cells and sphenoid sinus are patent.
The left ostiomeatal complex and frontal recesses are opacified. The sphenoethmoidal recess is patent.I don't know which issue has me more worried.......I have googled all of the above and there are so many different possible causes....bottom line, sinuses should not be opacified.
Prayers appreciated and please know that you are all in my prayers as you face your varying challenges.
MM
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Parry, I have just recently joined this group and I am imagining your wedding with a man who after 10 years loves you so much that he has no problem with your stage 4 cancer. When are these two weddings?
My second weekly Paclitaxel is at 1:30. I have had a good week.
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Masons~You are definitely getting some precious positive thoughts your way. It’s always so daunting with mr Google. I am going to hope it's one of those things that sounds worse than it is. We are holding your hand. You’re not alone. We all face things we don’t understan at some point scary shit for sure . For me ibrance has been fatigue ridden the whole 25 months. I would hope that they would get that “D” under control! Sending you big hugs! ~M~
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waving hello to Marian. Good luck today at 1:30. Will be thinking of you!
Hi Gracie!! Edwards. Where you been ? Lynnwood you ok darling ? Chicagoan... haven't seen you either.
Divine ? Lynne (Man) hope all is ok!!? Waving to Grannax! Miss Bianca. Footprints ...Sheila Marie
Much love ladies. Soldier on.
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Loving the pics MJH and Tanya!
Lynne’s (50’s & man) and Parrynd1, great to see you, I’m sorry you all are having such troublesome issues lately. Sending out my best good vibes to you!
Well, jump in my pocket, I’m off to the cancer center for my routine follow up brain MRI. Results will be in tomorrow afternoon. Of course, nothing new would be best but I could even handle some new spots, if that’s the case, just hoping for nothing devastating 😬. I have no reason to suspect anything but cancer is sneaky, so you never know.
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Mae, I hope you have lots of pockets because there are many of us there with you. I hope the news is all good!
Hugs and prayers from, Lynne
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in your pocket, Mae. If you hear crunching, I've got cheetos! Hoping for great report tomorrow.
I go tomorrow for monthly bloodwork and xgeva. This has to be rescheduled because they were closed for snow.
Hi to everyone.
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Mae - I’m here! Trying to find a place to sit in this pocket, but it’s so full! And, have I told you lately how much I admire your spirit? Not sure I have, but trust me, I do!
Parry - thank goodness you finally checked in. We were all getting worried. I’m so sorry about your skin mets. but I’m so happy for your upcoming weddings!!
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