My Husband, My Life, My Love, My Family, My Cancer
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Home sweet home Mae. I’m sure you’ll use every remedy mentioned above. Looking forward to hearing good news from you.
Nice to see everyone checking on Mae and supporting us.
Moomala I am hoping beyond hope that your lung is easily resolved.
Booboo hi lady!
My baby brother took me on a short peaceful boat ride on the river this afternoon.
Waving hello to all.
Tanya
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ooh, Tanya. Does look peaceful and warm. Hope you enjoyed it for all of us!
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Mae- I am glad you are in the comfort of your own home, as I am sure you are too. What are they saying about the throat? Irritation from the ET tube? And will heal on its own? Good grief, not the cancer or the brain surgery, but issues with your throat. Crazy. Glad you are back with us. Rest and recover. Hugs from here.
Edited to say-- Tanya glad you had some peaceful time with your family.
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Mae, glad you are home. The rest will do you good and hopefully the wonky swallowing goes away soon. It sounds like you got out of hospital in 3 days as well. Good for you.
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Yep good for you Mae, although you’ll likely have a long road to recovery!
Tanya, out on the water looks great!
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Mae~Rest up at home.....
Grannax~I am so glad to see you. I was worried about you. Glad you're active over on the liver thread. Means you're around kicking butt!! Miss your kind posts and stories of your wonderful grandchildren.
Tanya ~ looking good darling. Way to go brother! Good brother. How awesome and I am jealous for sure!
Moomala~ (Damn auto correct)They better get their shit together and figure out what's going out and get it straight. You poor thing have been up and down. So much this past month I'm Speechless. You are on my mind. Sending you good thoughts as well....
hello Mara! Candy! Minus! Frisky!
Teddy! Welcome to the thread... we love our Mae for sure. santa hello friend! Dodgers hello lovely! Karen, hope all is well tonight with you. I can't wait for bed Personally !Hi Minnie!!! BooBoo!!! Waving to BevJen! Good to see you! much love to all
Runor~Miss your witty self! Yndorian as well!
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Mae A long time ago, when I had surgery to remove my C3 vertebrae, I could not swallow at all, not even my own saliva, without choking. I had to use a suction thing for three days and on liquids only for weeks. Misery. But, I found out that thicker liquids went down easier than water. There is a product called thick-it that can be added to liquids. The blender will be your friend. My neck was reconstructed because of MBC to C3, that was 20 years ago.
Tanya, water is soo relaxing and peaceful.
I'll post a pic of GD. At 13 she has decided to be on every sports team available at her new school. This is a big change for her. This year she's been on the Cross Country Team, the Swim Team and next Softball. She also is on the Debate team. Who knew?
Last year in February I was in NYC as a survivor model for SMGlobal Catwalk. This year Say Yes to Hope decided not to go. We've had so many losses this year, including the co founder of Say Yes to Hope. Suzanne Lindley, our founder, is grieving her loss more than anyone. About five other key players are not with us anymore. So, sad for their families and we miss them. However,. Suzanne just got back from the ASCO 2020 conference in San Francisco. She will not give up on her mission. We are planning another Retreat From Cancer in April in east Texas. I'm looking forward to that escape from our reality.💞
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Both Grandmothers with Aubrie at her last Swim meet of the season She improved her 50free and 50 back by several seconds She’s taller than I am now of course that’s not hard to do because I’m barely over 5’, she’s 5’2”. I doubt she’ll get much taller as all her relatives are petite. Blake is still deep into Gymnastics competition, his third season and he’s only 8 I’ll see if I can find a pic
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Blake is Level 5 He got some medals at this one but had to change clothes and put them in his back pack This Meet was held at the same gym his dad used to compete in it feels like I’ve come full circle having watched my son in this sport and now his son.
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there are those cuties pattotooties !!!!! They are getting so big. How do you keep it all straight ? Goodness me. Id need a calendar to keep track of the sports But what fun for her You’re looking lovely as usual. I remembered the cat walk this time last year. Just Don’t forget You’re still our star. You and Tanya!!!!
Okay Maes pretty cool too she meets cool musicians!! Pretty cool people here. Whom I care for greatly
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Grannax your grandkids do so many activities. That’s wonderful that you’re able to see them succeed in the same venue as your son. It must feel like home.
Treatment bloodwork stuff tomorrow don’t feel like a star for sure. On the ibrance thread I read several ladies taking a week or so off from treatment. And then Philly writing that she does supplements Monday-Friday and gives herself a break. How do we feel about breaks? I’d love to take one but I’m too scared right now.
Moomala and Mae thinking of you guys.
Tanya
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Tanya, lovely boat trip!
Great pics Grannax of the grandkids.
Sending all good wishes to everyone for bloods, scans and all the other stuff we accept here.
Hope the throat is improving Mae.
Xx
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Tanya~.My oncologist allowed me to take a three month break and only take anastrazole! He said it was because of my continued stability. I sure hope it is the case again. Haven’t been scanned since May 2019. My hip has been a little Bugger as of late. I’ve noticed a little sleep annoyance as well. But I’m doing more now than before. So I’m hoping it’s just muscles. But I needed that break. But even though I had one, it was harder to get back on it. I hated going back on. But what helped me was one week on and one week off for two weeks a month. Instead of three. Side effects are better that way it seems. The hip thing bugs me though. I’m going to watch the little bitches... hugs to you.
Moomala and Mae~ hope you’re feeling good
Minnie~always good to see you my friend. What’s your weather like ?0 -
I am doing well - we have just returned from our trip to Dana Farber Cancer institute where I got a HEAP of love and hope from the my oncologist there. I am so happy I went there. She's got some studying of my imaging to do but she's told me there are tons of options available to me. Dana Farber is really a great place. I wish I lived closer and could be treated there, but the oncologist told me that I can come visit her anytime I want to. In her notes from today she called me lovely. I was so touched. My oncologist here is science nerd central and not much feeling. I needed to hear from a doctor that their plan is to keep me alive with good QOL and that I have plenty of options open to me, and most importantly that they care about me and my feelings. She recommended staying on the current treatment since I am stable but that I should consider asking my oncologist for dose reduction to cut down on the side effects. She wishes I had not been taken off Ibrance so soon. But here we are - so she mapped out all the next steps for me and best of all I am getting genetic mutation testing similar to Foundation One but it's created by Dana Farber research institue and it's freeeeeeeeee!!!!
I am exhausted. It was a five hour drive. We left yesterday and came back today after the appointment. So my back hurts a bit and I'm really tired. But so glad I went there. It was ten times the size of my cancer center here, but I felt I was getting individual care and concern there. Really great.
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Moomala, Your day today sounds like just what you needed, so happy you felt the love, and also their hopefulness for you!!!!! Will this onc be involved in your treatment decisions with the science nerd onc? Or maybe it was just a consultation for your benefit?
Grannax, great family pics! Your granddaughter’s interest in all those activities is really good for her. I’ve heard that high school coaches say their students are better than uninvolved kids at budgeting their time, since they have less free time, and have higher GPAs (as@ group) than other kids. Your grandson is also focused on gymnastics which is great too! I know the gkids are much younger than high school but I definitely believe having one or more activities is a good thing for kids.
Tanya, That’s so nice for your son to take you out on the water. 😊
Mel, Hello! That is an interesting plan, one week on, one week off. I guess you’ve earned it with your long run of stability. Kept on going, strong woman!
Mae, I bet you’re so happy to be home. Sending you my best vibes for a speedy recovery.
I had a pretty yucky ct today as planning for rads after my lumpectomy. I was convinced of the value of doing them after two long consults with a very patient RO. I’m not going happily but hoping I’m doing the right thing. Aching arms overhead, breath holds using a snorkel type mouth piece and air tube, nose plug, unclear directions from tech about breath holds. I made it but was shaking from stress by the end. So glad it’s done. Also visited a friend at same major hospital whose DH is in icu after a severe downturn following big abdominal surgery. Very sad but she’s realistic about possibly losing him. I hurt for her.
Hello to everyone reading.
Rosie
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Moomala,
So happy that you felt that this onc was responsive and involved. That counts for a lot! And she can also consult with your current MO about your treatment. Wonderful! Makes the trip so worthwhile.
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Mae: try sucking the salt off potato chips. Don't even eat the chip. Just suck the salt off. For brutal killer sore throats due to throat infection or singing along to my favorite euro death metal band, I suck salt from ripple chips. It is way more effective than a salt water gargle.
Sorry that I do not mention everyone and what's going on with you, I don't know how you keep it all straight. Mel must have a mind like a steel trap. My mind is failing, I'm sure, as I'd forget my own head if it wasn't screwed on! But I am sorry for each and every agony and misery you endure and happy for the moments of peace, contentment and rest that you feel. Hugs to all.
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Moomala, glad you had a worthwhile trip.
Mlicmel, our weather in Spain has been atrocious. I had 2 weeks in hospital looking at cold sunny skit's, then 1 week of rain, cold, wind etc etc. Has improved thankfully, had a little sit on the balcony in the sun yesterday. Still on the mend after the lesions but back to normal treatment next week, with check on the head after that. All good fun. Best thing is, my daughter's are coming to visit, from Canada and Scotland, so there's going to be some big cuddles. Not bringing the kids, so Mum and daughter time (dad too, of course)
X
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Moomala - I was wondering yesterday how your trip to DF went, so happy to see the update! I hear you about the science nerd MO, mine is like that too as he is clearly more of a researcher than into the patient thing and interaction with him can be somewhat awkward because he does the British upper middle class thing and gets to deal with my Americanisms. I don't need touchy feely, but someone I can relate to who has a sense of humor and hope would be nice. I loved reading how positive your consult was and how comfortable you felt the whole tone of your post was a 180 from some of the more recent ones, much more hope and confidence in treatment.
Rosie - happy to see your update even if you had to do some extreme radiotherapy gymnastics.
Grannax - Any kid involved in club sports outside of school learns real fast about dedication, responsibility, follow through, and time management that they will carry them through their whole lives. They look so happy to have their grandma there to watch them too!
Minnie - you must have had the same storm system we had - its been miserable and cloudy, although yesterday was some cold cold rain. So far today the sun is out, but let's see if that holds up! I'd rather be in more permanent sun like Tanja at this point.
Mae - keep getting well
Hello to everyone else!
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Moomala that’s great news. At least we know it’s available as a consultation.
Rosie24 that was my. Baby brother. My father had 3 families. I’m from the first marriage there were 6 of us. Second marriage 3. And last marriage 2. Sorry about your friends husband. Certainly heart breaking. Is this the first time you’re doing rads?
Sondra F I’m originally from NY. Many freezing cold winters with rain snow and ice. We’re old and everything aches so the break in weather helps.
Minnie nice to see you. You’re a trooper!
Mel thanks for explaining your treatment. I had no idea you had done that. I’m off to talk to my Onc about it today. I’m around 33 tx on 100 ibrance. Are you still on 125?
Mae I hope you’re feeling a little better today. Who knows what they poked or scraped in your throat. Sending healing 🤗 hugs.
Waving hi to all
Tanya
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yes Tanya #45 on the horizon for me at 125 mgs. It’s strong. But has been amazing! This way I get less side effects. They don’t have the piggy back effect I felt three weeks on caused me. It’s been easier for me, I think everyone may need a break at some point. It helped me. I got used to the break and didn’t want to start again. It sucks!!!
Runor~ even. Steel traps need a good greasing! I try to remember everything about everyone. It’s important to me...
Mae~rest well beautiful friend...
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Morning all.
Moomala- Glad to hear the Dana Farber trip went well. So, you said they recommended to stay the course with current treatment plan. How about the Primary Lung Cancer thing? And am I understanding that you are staying on Afinitor? And Dana Farber says you are "stable" for now?
I try to keep up with everyone's status. My mind is not as good as Mel's. I jot down notes next to my computer to keep everyone straight.
Grannax- Love the pics !!!!
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Rosie Glad you got that first visit done. You won't have another one like that. The rest will be a piece of cake in comparison.
Yes, I agree, being in sports is good for kids in so many ways. By this age, my kids had chosen one sport to pursue. DS Gymnastics and DD tennis. DG is just surprising us with her versatility and being a team player. She was into theatre. All of a sudden she's having fun in all sports. Who knows what she'll chose to focus on. It's all so good for her. She's coachable. That counts and prepares her for whatever her future holds. I'm secretly hoping she'll be in more musicals. I loved watching her in plays.
Yes, you should see my calendar. I don't get to go to everything. GS travels all over the state for his meets. I only go to local ones. How my DS and DIL keep up with their schedules I have no idea. Sometimes they have to divide and conquer.💞
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Tanya, Sorry, I guess I can’t keep straight what I read! So nice of your baby brother 😊. Yes, my first time having rads. I was dx denovo about a year ago and a conversation with my MO led to BS consult, which led to lumpectomy, then RO.
Grannax, I think I could get better at the breath holds but this time was rough! I’ve had a ton of CTs and MRIs and a few biopsies this past year, nothing like that.
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Hi All,
Have been reading but not posting much. Had my second treatment today. Was told the hair would be gone by the end of the week. That’s ok. I got most of it cut off anyway. Having joint pain with Abraxane, but only for the first day after treatment. Then it seems relatively mild compared to some of the others. I am just hoping that the nerve pain will start to subside soon. But overall, I am glad I switched meds, and certainly glad I switched MOs. I absolutely love the new facility in Lutz. Tanya, I don’t know how far that is from you, but I suspect not too far. We will definitely get together again, my friend. I have not felt like eating much as of late, so it may be better to wait until an off week. (This drug is taken 3 weeks on, one week off.)
Mae, so very glad to hear that all went well with your surgery. I hope I can be as brave as you when my time comes.
Moomala, glad your trip was good. Sometimes, just to hear another opinion helps me to know I’m on the right track. And Dana Farber is more than just another opinion....it’s an excellent one. I am kind of glad you are staying on your current treatment. With our track record of pneumonia, I was worried if you went on PIQRAY, you might get really sick again. I wonder if even I would have been okay with PIQRAY had I not just gotten over an upper respitory infection when I started it. My immune system was shot, so I am still not sure why the old MO was pushing PIQRAY for me. Oh well, who knows. I’ve moved on, and am much better for it.
Mel, I hope you are doing well. I hope all of mylovely friends here are doing well!
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Like Runor, I'm hopeless remembering individual problems but I feel for each and everyone of us. With you for checks, try to understand your treatments, send positive vibes and love and hugs. Really care x
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Hello team FU cancer...
I’m on a small rant tonight. Cancer is really pissing me off today. I want to learn to cross stitch and embroidery! Would my fingers cooperate nahh. So annoying. I just want a project and something to keep my mind off of living life with cancer everyday. A break from feeling like we are all lined up on the edge of a large cliff and we are all looking at each other and holding on for dear life. a break from the pitty look that people give you.
I had a beautiful visitor today. My best friends aunt... she is a joy . She’s the one who was diagnosed stage 1 before Christmas. We’ve grown so close. Today she said she doesn’t believe in the word terminal. And she refuses to say it. She said cancer is so evil she can’t bring herself to give it that much power. Terminals are long in airports and there are many that connect. I will keep my attitude that terminal is just a phrase and I am going to fight until my head pops off like a dandy lion ... I am sick of cancer period. Anything and everything to do with it. The side effects we never heal from. Ugly ass hole cancer is0 -
Hi all. Can’t sleep, I keep choking on saliva or wake gasping and wheezing. I’m absolutely miserable, every pill and sip is agony, so trying to get someone to do something about it before all this inflammation and fluid becomes pneumonia.
Wish I had a better check in report but sadly my current state just sucks. More later hopefully.
Wishing everyone else well 🙂
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Mae. Would your MO or home health order a suction device for you? That's what saved me. They may want you to have a swallow test. If you aspirate into your lungs, that won't be good. I got choked on my saliva too. I know what it feels like. I know there are ways you can be helped through this while you heal at home. Even your PCP could order one for you. Praying for relief and sleep.💞
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