My Husband, My Life, My Love, My Family, My Cancer
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Well, slept well last night, went to bed at a decent hour, woke up at 6am but stayed in bed until 7am. Am presently washing the clothes to wear to Herceptin. I want to wear the ones I wore a couple of days so need refreshing. Got Paratransit coming 1100 am which is good as well. Need to do some minor chores otherwise. New washer is doing well too, not overloading either, using the Panda spinner more too. Just throw the laundry in and then toss it in the Panda spinner and put a bigger towel on top for the balance. Goes 3200 rpm so most water is spun out.
Looking forward to getting out even if only to cancer centre. Nothing in particular in mind for breakfast, thinking beans and rice with beans and cheese going through chopper to resemble ground beef, add some wheat bran for fibre or cereal with the croutons, I will see, just white rice as to keep simple. Edit, later, don't have time now but planning to chop cooked eggs in with beans, cheese and croutons to turn them into the beef ground texture I enjoy so much for a different use whether on top of rice, pasta or in a tortilla, will have to see.
Hope everyone has a good day, in pockets for those who may need it.
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sondraf Glad you finally enjoyed what sounds to me as a delicious easy high calorie drink. Thinking of you as your off to your infusion and sending positive thoughts for a smooth day. Hugs.
intolight Glad your scan was good! I hope it's something to hang your hat on for now to boost your mood.Yep there is lots of CYA in radiology. Always have to read between the lines…annoying
Mara Hope your Herceptin goes well today and the Paratransit ride is smooth. In your pocket today and always.
Thinking of all here and sending strength and sunshine to you today.🌺
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Reading along.
Sondra- Sorry to read you are facing another treatment change. My thoughts are with you.
Intolight- I get MRI's of the abdomen, since my previous MO said MRI's are better at visualizing the liver, and my current MO continued ordering the MRI's when I started with him. Who knows really. Hope your pancreas thing is nothing.
I have always worried that my MO's are not looking at my bone mets enough. I get a CT of the chest to look at the lungs, and there is a "bone window", I guess thoracic spine and breastbone. Then I get an MRI of the abdomen to see the liver mets and the other internal organs (no other mets elsewhere thank goodness). I have only had 3 or 4 bone scans thru all this. But the bone scans light up due in part to the arthritis I have all over. So they don't order routine bone scans anymore. I could be having stable liver mets, but progression in the bones, and I would never know. I cannot go by symptoms, as my arthritis hurts all over- hands, shoulders, low back, hips, knees. But my labs are ok, and maybe they can tell on the labs if there is bone progression- calcium level, etc. Who knows.
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Good afternoon ladies
Pocket duty for Mara and sondraf. Treatment days are marathons.
Intolight congratulations on good scan.
@candy-678 does the arthritis light up on a pet scan? I never knew that. I did find out that my injection infection site lit up on the scan even after it was all healed.
Did anyone get a Covid vaccine recently? I read an article about a new version being available in the fall. I’m just debating if it’s worth it to wait since school resumes now. I know some have recently had Covid too. Any thoughts?
Take care all
Tanya
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So it took forever as my scans were last Tuesday but results just posted to my patient portal as I was on my way to meet with my MO this am. Good news is that I remain stable for which I’m so grateful. My mind started playing tricks thinking CT is being held because something is bad. It’s part of the worrying that we all do with this stinkin’ disease. I’m all set for my right knee replacement on Tuesday and will get a break from Ibrance for 2.5 weeks. Since I’ve been on it for 5 yrs my blood work is starting to drop a bit more when I get labs done. Looking forward to that little vacation 😅.
Sondra - so sorry you had progression again. Fingers crossed that the new med will kick the beast within and help your pain.
Here for pocket duty for all in need🥰
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@goldensrbest Glad your scans are good and you are ready for your knee replacement. You are brave!
@sondraf Sorry you need a treatment change. We are all on a roller coaster of treatments.
@tanya_djamila I have been thinking about getting a Covid booster in the fall also. Didn't get one last year and I am real hesitant as I tend to not do well with them although I get a flu shot every year and do fine.
I am still feeling really crappy and wondering how long it should take for the lower dosage med to feel like it is making a difference. Perhaps I should have taken a short break but it is too late now.
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Goldens, so good to hear good news about your scan results! I would be wondering the same thing if they were delayed...
Intolight, also great to hear about your scan results! I feel like I read the notes with a grain of salt now, and wait to talk with my MO, since the radiologists don't always get it right.
Sondraf, thinking of you, and hoping that enhertu can work well for you. You definitely need a win!
Tanya, I'm waiting for the new covid vaccine coming out this Fall, the latest covid strains have different symptoms and I want to build up as much immunity as I can. My last dose was last Fall.
I miss my husband. My house painting is done and I'm slowly putting the artwork back on the walls - feels hard to get inspired when he's not here to see it. My next set of scans are next month, and if they're okay, want to plan another (short) trip with my Mum.
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@goldensrbest, so good to hear your news about scans. Thinking of you and wish you the best outcome for knee replacement. In your pocket should you need support.
@mara51506, your ingenuity with so many things is an inspiration. You are truly a "can do" person.❤️
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Goldens- Congrats on good scans.
Tanya- I don't know about PET's and arthritis. I have only had 2 PET scans in the 7 years with MBC. I cannot remember if they lit up in the arthritic areas. But I know bone scans lite up with arthritis.
I am going to wait until Fall for the next Covid booster. We are having cases in my area now, but I will wait to get the vaccine. I am masking and doing good handwashing for now.
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tanya - there is a new strain circulating now for which the old vaccines won't cover so frankly, getting a vaccine now won't cover much. Im also waiting for the updated versions for fall and in the meantime doing the handwashing/sanitizing and masks as needed.
Infusion went well - I fell asleep lol. Got a bunch of post infusion meds to take next three days and it was a lot of instructions but I think I can handle it. Bonus in that the new chemo suite menu FINALLY appeared (there had been rumors!) and changed from the god awful stodgy sandwiches/wraps of the past to something a bit more healthy/interesting. I had lemongrass risotto cakes with sweet potato keralan curry and ate 3/4ths of it - was really pretty tasty. Hey, you got to take your wins where you can get them! :)
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I’ve been here checking on you all. Haven’t had much to share. My best friend just went in this amazing vacation with her family. I saw all the fun pictures of excursions and things they did . I am so sad I can never be that family . It makes me so mad. I sit in my chair or lay in my bed , drive to the store on rare occasions . I do nothing. Nothing. Nada. It gets to me and I get in a funk . I’m in my funk now. Just know I’m here and love all you ladies. I’ll snap out of it in a few days! Hugs to all. In pockets as needed though! Sondra. Thinking of you.
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Mel hanging with you until the funk passes. It’s a dark cloud that hangs around.
Thanks for responding about the Covid vacs. I will take your advice ladies and mask and wait. I asked on my patient portal bc I think they should suggest what’s best for us. I don’t want anything extra just enough thanks.
Sfcakes sending hugs don’t know what to say. I hear you though and care.
Tanya
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Hey Mara, any ideas for no carb diet? I have to prep for PET scan ugh 😩 I have eggs, black beans, cottage cheese, fish, lettuce. I'll probably live but I'm bread a holic lol. No sourdough toast with my egg! The torture!
I'm nervous about the scan.There was progression to liver so I was taken off Verzenio, changed treatment to everolimus and now off again because of the mouth sores. I've felt worse in general lately. The heat and smoke haven't helped.
@goldensrbest I hope your surgery goes well and have a speedy recovery.
@sondraf I can relate to the treatment change roller coaster and hope yours goes well.
A hug to you Mel and all others going through so many things.
Here's the wicked witch queen of the sugar syrup and all three rose of Sharon bushes. Mean little bird thinks she owns it all, chases everyone else away!
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Hello all you lovely ladies. I caught up on each post. Now to remember, lol. @sondraf I wish your sweetheart was there beside you to enjoy the beauty you have bought into your home. Keeping engaged and motivated may hopefully lessen some of the pain of your loss. @micmel It is difficult to hear of friends and family vacationing and we are stuck at home. I try to find crafty things to do, or a great book. Sometimes I wonder the plants twice a day just to get out the door. If I can swing it, tomorrow I want to hit a thrift store or at minimum Ross's. Money's tight, but I saw some cute ideas using Dollar General and thrift finds. In pockets for all scans and change of meds and hoping for excellent results.
I had two nurse visits at home today. I'm so exhausted as one came early and one came nap time. lol. But one is working on trying to find lymp massage therapist for me. They both want me to crank up walking an hour a day. Little weak and dizzy, but I'll give it a try. I do better in the pool, but I need someone to watch me. DH saw his GP. Lungs are clear, but he still sounds froggy. So GP agreed to Xray and blood tests. Interesting tidbit about covid, GP said most folks do not die of covid but infections that occur afterwards as they are too weak to shake those infections.
May your tomorrow be bright and pain free.
Laurel
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@micmel a warm and careful hug for you during sad days and good days.💗
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Mel - I know exactly how you feel! Our DD and family travel frequently (in fact we gave them our time share after dx w/MBC and she makes great use of it). I won’t travel out of the country and have no desire to get on a plane for travel in the US. I have too much fatigue and pain to want to go. Plus my lab values are always low and I don’t want to catch something. And yes it hurts to see them enjoying themselves, especially when the other grandparents go. I’ve accepted it for the most part but it still makes me blue.
Sending hugs with wishes for good days for all🥰
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Nobody who isn't in our shoes can really understand just what this fatigue feels like. I find that acupuncture really works to relieve fatigue and promote a general sense of well being, if you can find a good person. @irishlove I always traveled through books. You can go anywhere, and you don't have to put up with all the hassle. You can go back or forward in time and around the world. You can live lives you've never dreamed of. And you learn much more about the people in these places.
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Mel - I'm so sorry to hear about your funk, but I can really relate also. I get the same thing. It's just so good that we all have each other, because as Tougholdcrow just said above, nobody else can really get it and know what we experience. Hugs and warm thoughts to you.
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@sunshine99 Sorry ro hear you are struggling so much with eating issues. Holding you up in prayer.
@micmel and @goldensrbest It is hard to watch others travel. My kids want to do a Christmas cruise but I just told them no for me. I can't even imagine a long flight then seven days of constant activity on a large ship and a long flight back home. No more cruises for me. I need no stress and a restful environment. For me that means home. And yes, I read daily. My son has amazing in-laws who are able to do things with his three sons that I long to do. But I am happy they have this experience with great people. It does make me cry…
@irishlove Glad your DH will continue to get more help but sorry he is still fighting.
Still fighting so much fatigue. I did get out yesterday to order new glasses and eat lunch out. We just have to push through. I agree with Mel that I am in a state of constant funk. And I look around me at the myriad of things I need to do and try not to get depressed about it. It is what it is!
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Hang in there ladies. You've got lots of folks quietly rooting for you all.
Your supporters get in a funk too, but I know it's different and probably not comparable to what you all go through.
I find some truth and solace in the lyrics of an old, not very popular Emmylou Harris song called Red Dirt Girl. "One thing they don't tell you bout the blues when you gottem, you keep on fallin cause there aint no bottom."
I hope those of you who are currently fallin do find the bottom and start rising back up.
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@mkestrel good luck with that PET - Everolimus was a total beast for me that appeared to be working the first month with a drop in tumor markers but had a wicked sting in its tail with that lung pneumonitis. I hope your sores clear up soon and your scan is good though, and you can survive without bread for a bit (look up keto bread for an approximation although it may be more hassle than its worth!)
@micmel I hear you on the funk of always sitting or laying down and rarely leaving the house. It gets to me every day at a certain point (usually before pain pills are due) and I get upset to varying degrees. Lately Ive come to accept it a bit more, but I still struggle with letting hubs do so much for me.
I dont think we are going to travel out of the country again until I have a more functional leg and then it will be to Europe mostly (via train) and for longer than a 'long weekend'. Maybe Asia. Anywhere I dont have to fear a giant medical bill if I get ill but we can park somewhere quiet and restful by a beach. Hubs is going home alone end of September to Sweden because it was a tough trip in the best of times, even worse now I can barely move and all the flight delays and malarky, its just not worth it no matter how much I would love to go. I dont mind, and he can book as cheap a hotel as he wishes lol.
Edit - Can anyone point me to the main Enhertu thread? There are so many, but I think the main one WenninWI was posting in recently and I cant seem to find it. Thanks!
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@sondraf I am with you about feeling sorry my DH has to do so much for me. It makes me get up and try but usually it is not much of a help. I do light dusting and always the toilet, but that is about it. He knows I am having a good day when I try to do the dishes. lol Everolimus mistreated me too with the pneumonitis. I was glad to get rid of that one.
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@mkestrel I like to do stuff with cheese if when thinking of something different. It also depends on the type of cheese. You could take regular blocks of cheese, grate some up and put on a greased pan, enough to put stuff on top off like the lettuce, beans etc if you can have those. Other option, make the regular cheese into almost crackers, season as you will. They make crunchy chips, don't replace the bread but give something else to nosh on. You can also go the route of blending up cottage cheese along with grated cheese, season with anything you like and pour into a greased muffin tin, make sure each muffin space is less than half full. Bake at 375 for around 10 mins, let cool and spoon onto a plate, they are not large but would be good to eat. I made some this morning with 2 eggs and a bunch of cottage cheese. Blended up cottage cheese and eggs, poured into the greased muffin pan, baked up 375 oven for around 10 mins. It was good for me. There are recipes for low or no carb breads as well to help with your craving on youtube.
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Good ideas, thanks Mara. Mmmm cheese. I have some grilled salmon, black beans and cottage cheese. I also have fresh garden cherry tomatoes for my salad.
I've been coughing but I'm getting over a cold. I really hope I'm not getting pneumonitis. Sorry to hear you had that sondraf and intolight. The mouth sores are getting better but taking forever.
It was funny this morning the nurse called me to make sure I started the diet and I said I had no toast. She said oh well you don't have to start the diet until 12:45 p.m. because that's 24 hours from the test tomorrow. So, I happily ate lunch at a restaurant with my family. Somehow it's less trouble to just do dinner tonight and breakfast tomorrow following the diet. I don't have to skip breakfast! That wasn't fun last time because I have to drive 45 minutes to the next town for the test. So it seems the best time for a pet scan is 12:45 p.m. haha
My tasty little tomatoes. Some virus killed most of my plants of the larger tomatoes...
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Hello ladies, I have been reading your posts and I am impressed by how well we truly understand one another ❤️
sondra, here is the thread you are looking for: " Anyone starting brand drug, Enhertu? "
Hugs
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@bighubs Thank you for your support.
@mkestrel Lovely tomatoes. One of my favorite snacks! Maybe I should try to grow them next year…
I just heard back from my MO on my scan from Monday. She just ordered an MRCP of my pancreas. She says it is not too concerning but she wants to rule stuff out. It looks like it is like an MRI… anyone else had that? I thought I had every scan type already! She also said everything else on my scan looks great. One more hoop…
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welcome big hubs It’s always so nice to hear from lurkers. It lets us know what we share here makes a difference . Sending plenty of good thoughts
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mkestrel - What a nice photo of the tomatoes. I just love little cherry or grape tomatoes. I eat some almost every day!
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Intolight, never had an MCRP but in your pocket for it.
I slept well, have an echo at 2pm, Paratransit coming at 130pm. Should be a fairly short appointment for me though.
Doing a few cloths in the salad spinner so I can wash the stuff in the washer, not in the mood for the little washer today. Salad spinner is fine for small things that are not heavily soiled, wee washer takes care of the other stuff. I use the regular spinners to spin dry, salad spinner not able to do that. The duplicate spinner will be used for laundry only. Getting boxes to flatten. Last box should be the paper shredder which will be good, did order blue bags to collect the shredded paper. Instead of dumping it out which was messy, collect and just put the bags in the recycle. I have more items coming tomorrow, enzyme spray, peanut butter, Tide liquid which will last a long while and more blue bags as well.
Not sure what I am wanting today, think I will start lwith a milk and boost drink to start. May try out another cheese bread type thing with some of the cottage cheese and shredded mixed with parm cheese as well, put some chopped black beans to act as ground beef and cook in the breville at 375 for a while, that will be supper I believe.
I hope everyone has a good day, in pockets for everyone who needs me.
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Mara - Good luck with your appointment today!
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