My Husband, My Life, My Love, My Family, My Cancer
Comments
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50sgirl- yay for being able to see clearly again! Hopefully, the TM jump is just a glitch. Could something about the surgery have affected that?
Dodgersgirl - I'm sorry about your progression. I've heard many say good things about Xeloda. I hope is an easy treatment that pushes things back for you. Do you mind me asking how long you were on Verzenio? I'm coming up on 24 mos and hoping for a long haul on it.
Sadiesservant- your garden sounds lovely - as does your cool spring. We've been in the low 100s for a few days. Hoping for a break in temperatures on Sunday.
Today, I managed 3 sessions of 10 minutes on my elliptical. The breaks help a lot. I was still so done with it at the end of my last session. This afternoon, I dead-headed my knockout roses. It was really too hot for that, but I'm hoping they'll be in full bloom when my kids are here next week. I primed the small wall areas that need finishing next to my kitchen. Tomorrow, I get to experiment with spray-on wall texture; I hope to paint and be finished with it on Sunday.
Waving hi to everyone - Mel, Mae, Candy, Rosie, Tanya, LivingIVLife, booboo (haven't heard from you in awhile), moth, and everyone else!
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yay for stable emac and Sadie!
Hello to everyone! I haven’t posted in awhile but check in everyday to read how everyone is doing and what you’re up to.
I’m spending my time navigating the grocery prices/meal plans (hello Mara!) unfortunately DH needs full out meals for dinner. I could eat some crackers or whatever but I do need to take in calories.I made Shakshuka the other night which is eggs cooked in a tomato sauce. Soooo good the next day, I’m going to make the sauce every week and cook the eggs in itthe next day. I’m really trying to cut out food waste too.
Also helping DH work on a project to hopefully bring a little extra money in, since I am on disability now “retired” and pulling in less money, while the cost of Everything is going up! He is a graphic designer and is so talented, can draw literally anything. Also can do “web stuff” like make storefronts and manage security and all that. Makes me feel like a dunce!0 -
Mae, you are welcome. I plan to try to make english muffin pizzas. Bought some canned pizza sauce to try it out. Planning to put garlic spread and bake the english muffin, adding cheese and beefless ground as well as sliced mushrooms within the last couple of minutes. Should be a nice change from the usual fare.
My lunch today was 1/2 cup black beans, 1/4 cup beefless ground and just under a 1/4 cup of pasta. Baked the beans for 10 mins on 450 to make them crunchy, while they were going, boiled up the pasta which took just about as long as the beans and microwaved the beefless ground since it would just straight up burn in the oven. Added bit of wheat bran, salt and I put together a lot of my spices for sort of an all season spice. Applied the spice liberally. Pulled out some caesar dressing, tiny spoonful, little ranch but also mayo, combined it all, and it was delicious. Better than any package pasta.
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seeq— I was on Verzenio for 16 months.
Congrats on 3 sessions on the elliptical!! I get to excited when I can walk outside and sit on a bench to enjoy fresh air on a daily basis.
Mara— as others have posted, so enjoy reading on the tasks you continue to accomplish. Makes me joyful to know we can do so much in spite our restrictions
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Reading along. Sorry I do not post responses as quickly as I should.
50'sgirl-- Thank you for your comments to me. I do get out SOME, just not as social as I would like, or as social as others think I should be. My outings are by myself and not really interacting with others-- library to pick up books or store to pick up random items between curbside grocery runs. Outside, but not interacting with anyone. Church or restaurants where it would be with friends and socializing I do not do--- mostly due to germ concerns, but also due to friends being busy, or due to me feeling icky.
I hope your TM jump this time was just a fluke.
Dodgers- Hoping Madame X is good to you and you achieve stable and stay there for a long time.
SeeQ- Good to hear you are exercising, even in spurts. I have not done any exercise in a few weeks, sorry to say. My hip hurts and feel so tired. I do need to try some, maybe those 10 minute sessions.
Where is Booboo????
Hi Kikomoon.
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Candy - the first time I got on the elliptical a few days ago, I didn't think I'd be able to finish 5 minutes. I took breaks and did 5 minutes at a time until I got tired of it. I figured 5 minutes is better than no minutes. I'm trying to increase my time without hating every minute of it. Lol
I'm trying to psych myself up to work on the wall texturing, but I have to go outside to practice it first and it's ho-o-ot (said in my best 5yo whine). I'm so tempted to wait until tomorrow, but I also just want it done!
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Candy— I relate to your comments. I haven’t been out in public since Jan 2020. No dining, no movies, no shopping... only trips to medical appointments and family houses. At first due to diarrhea from treatments (hard to be too far from when you need a bathroom NOW), then add CoVid, then the PE from CoVid vaccine plus pneumonitis from a different treatment which left me on oxygen (still am) so my world is really in my house, outside my house in the yard, online (avid computer user), tv, Roku, and family.
I so enjoy reading posts here of all other MBC people and all they do. It’s so exciting.
While washing out of Verzenio and awaiting Xeloda, I find myself feeling more normal (except low SpO2 if not wearing oxygen— like 78-84).
Just wanted you to know you are not alone in what’s been taken away by cancer.
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Has anyone heard from Granna2x, or Shetland Pony or BAP (not sure she posted here) or booboo? I haven't seen any of them online since the "Great Upheaval", which is what I've taken to calling the changes to the website.
I'm hoping the th just didn't want to deal with the "New and Improved " website.
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Last I heard about Grannax was she stopped all treatments. Someone that messages her posted that. Shetland was having a lot of health issues, and also was having problems logging on, I believe. Do not know anything about BAP. And, Booboo, check in when you can, please. She was doing pretty good last we heard from her, I believe.
It is hard when someone stops posting. I always think the worst.
Dodgers--- Thanks. I am sorry you are having to "shelter in place" too. It is hard to think about life pre MBC. I took so much for granted. Job. Church. And just the freedom to move about. Hug from here.
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have not heard from them except Tanya posted a few days ago.
50’s thank you about the painting, I find it soothing. It really relaxes me . Some of the projects are quite challenging! I’m glad you’re doing ok. Those tms are just a fluke!! I think of you often. I have some fabric left. I think of you. Hugs to you
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Dodgers girl, I try to keep myself interested in what I do as well. I am gradually narrowing my focus to a core group of things I use for different meals, narrowing seasonings as well. Beefless ground will always be there, tired of english muffins and eggs so will take those off the list for now. Peanut butter is off the list too since I eat from the container and my waist does not appreciate that. Rice and different forms of pasta will always be there, mayo and other salad dressings and seasonings will change the taste of things. I like to beef up and stretch my laundry detergent as well. Consists of Tide powder, grated soap bars and some baking powder to keep it powdery. Use a tiny scoop, at most 1/8 to 1/10 of a cup in a wash. Keep washing soda in its own container and always put in oxiclean powder. I use some white revive and mix it up with less expensive or store brands of oxiclean. Clothes always come out clean. I gave older DB and SIL my liquid detergent as I was trying to clear out my laundry hoard. I bought like mad for a while, working my way through it before replacing. I don't think I have purchased laundry powder for almost a year.
Grocery wise, I am going to have to stop buying beans and other canned stuff. I don't get through it all and I don't have room to keep a prepper pantry anywhere. Should keep to a max of 10 I think. That takes me through many meals.
Hoping to hear more about our missing members soon.
Mel, glad the painting is working for your mood and talent.
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my DH uses oxy clean and it works wonders. I’ve taken a break from peanut butter as well. I could also eat it by the jar. No matter what I do or don’t eat. The Meds make it impossible to loose and ounce. It’s kinda maddening! I think 10 cans is a good base.
I haven’t seen grannax in months. BooBoo posted a few weeks ago maybe two ? I have her number. If we don’t hear from her I’ll text her. I don’t like to invade. But we worry when one of us doesn’t come around for a bit. It’s all out of concern and sister bonds.
Off to try to sleep again. Some days. I sleep too much. I know that’s another issue I have that plays with my fatigue.
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All,
Sorry I have not been posting much. I’m in a lot of pain; upper right femur and right hip. My PA (I don’t see the oncologist much) has upped my pain meds but sometimes it is not enough. I fight myself over taking these drugs, but my PA, Nancy, told me to get over it…that her goal is to give me the best QOL she can give…and that means opioid meds.
So my OH is coming up for a visit next week. Driving (FL to PA). He was going to bring my boys (Teddi and Murphy), but I asked him not to. I don’t think I could take it seeing them again and then having them go away. He agreed so that’s good. But I’m mourning them all over again.
Things are not too bad though. I don’t want to paint a mental picture of gloom and doom. It has been a spectacular Spring. I love living at my Sister’s house. There is always something going on. Lots of activity. I think it helps so much to deflect the separation from the OH and my dogs. They are very active people, so it’d good to be apart of everything. I feel blessed to have such a great family.
I hope everyone enjoys their Summer.
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Good to hear from you Booboo. Sorry to hear of your pains. I too have pain in my right hip-- seems many on here with hip issues it is their right one, hum. Mine is arthritis, not the cancer. Ortho recommends pain pills. I am hesitant due to making me drowsy and constipated. Maybe I should just go ahead and take them. Glad you checked in though.
Another one that has not posted in a while is Kittykat. Hope you are ok.
Pocket duty list for week of June 26---
Kikomoon--- Brain MRI Tuesday with RO appt and results Wednesday
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Thanks for checking in on me Candy, I've been reading along but not feeling up to posting, I've had covid, been off treatment for months due to covid and 3 surgeries, my tumor markers have doubled, and I've got a big lump behind my right ear, I had a petscan last Tuesday but don't have the results yet, neither does my oncologist, hopefully tomorrow. I've just restarted Verzenio, hopefully it will get this crap cancer back under control. In the pocket of everyone who's in pain or waiting for scans.
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KittyKat, I am so sorry for all the stuff you have gone too, May Verzenio kick its butt as well. Of course I am in your pocket as always, even for strength for all the things life and cancer are throwing at you.
Laurie, I am so sorry about the pain. Agree that taking anything to stop or relieve the pain is best. I am a person who must be really suffering to take something but bone and met pain are much different issues, take whatever is prescribed and needed. In your pocket sending healing thoughts for the pain. I am also glad that you are so enjoying being at your sister's place and are generally happy.
I am not sure what I want to do today. I slept well, went to bed early. Been paying a couple of bills, trying surveys though getting kicked out repeatedly so will probably play some mobile games that pay a few pennies per level and take it easy. Baked some wash soda in the big oven and doing overdue laundry. Forcing myself to quit doing part of the job and then moving on to another thing I want to do without completing the first job. Working on that more. Not sure what I will have for breakfast, may involve baked beans, beefless ground, an egg and a tiny bit of rice or pasta with caesar dressing and bit of mayo. We will see how it comes out. Then I want to treadmill walk, too humid outside for up to an hour. Planning to do 5 or 10 minutes, take a minute to rest and do it again, treadmill tracks time as long as I do not forget to leave the safety tab in. I need more activity post meals and really have no excuses, my time is my own unless I have an appointment or waiting on the wellness call. I told her how inspiring she is too me to have a brain injury and to be so can do about her life. If she can do it, so can I. That is what I will tell myself the moment I say I can't.
Edited to add that I was finally able to remove tea stains in the microwave by purchasing the oxy clean stain spray. Left the spray in the microwave for 30 mins and went back for a rinse, wiped it down a second time with another wet cloth and used a generic Mr clean melamine pad after dried. I tried using hydrogen peroxide and wash soda in a spray, vinegar and making a paste from oxyclean and baking soda. That was a horrible mess to clean and still find spots to wipe up.
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good to see you both. Sending good thoughts.
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Booboo and Kittykat- so good to hear from you!
Booboo- I am sorry for the pain you endure. I take the medication offered to relieve any pain in the back knees and hips.
Kittykat- you have gone through so much . Know my thoughts are with you ❤️
Mara- you speak of beef less ground. What is it if not meat?
Today is wash day and clean up. Not seeing son until tomorrow. His birthday is July 4th so we will pick up some things he needs. He has so much clothes so a new pair of shoes and summer pajamas.
I have been on the internet looking at mother of the bride dresses because my daughter is getting married next year. They were going to get married in 2020 but of course everything was still canceled. I feel like the pressure is on for me to stay well enough to get there and be part of her special day. Don't need extra pressure right now.!
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Good afternoon ladies
Booboo it’s good to see you sorry about the puppies.
Kittykat wow 🤩 didn’t know that you had been so ill. Is verzenio a new med for you or are you resuming?
Trishyla and Candy thanks for asking about missing members. I’ve been looking for Grannax to post for quite some time on liver Mets. She was once a very active member here too. BAP posted on ibrance thread but it’s been awhile.
Moth does her blog and then she said somewhere it was too difficult to post everywhere. I can just imagine but hope she’s doing better.
Livingivlife I eat beyond meat and the ingredients are pea protein, brown rice, potato starch, fave beans apples. NO soy products some of the meat alternatives are loaded with soy which isn’t good for me. This particular brand ,beyond. I like the breakfast Italian spicy sausages.
I had a rough time forcing myself out of the bed today. Lots of aches and pains but eventually dragged myself up and got coffee. I feel much better after I move around. I did a load of clothes with my Mara recommended vinegar rinse. Take care ladies.
Tany
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Mine is the brand name of Gardein. It is made from soy protein concentrate with various seasonings to make it mimic the flavour and texture of ground beef and it does a good job. There are also a lot of minerals contained including high levels of B12, iron and others. It is also high in protein but low in calories and almost no fat. There is also a decent amount of protein. A 3/4 cup serving size only contains 100 calories. I can make a good taco meat dinner without all the fat and also make a soft taco bake sometimes where you layer tortillas and put cheese in the middle. It is delicious and a good addition to pasta, beans, rice or just about anything else. I don't consider myself vegan or even vegetarian, I started using this back when I saw how much iron there was and the beans, spinach and this got me out of being anemic and having plenty of red blood cells which is helpful. It also is much easier for me to prepare meals with.
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Tanya, I am so glad to hear that you are feeling better once out of bed and with coffee. Sometimes I just feel the same until I have moved around and had my tea. Glad the vinegar rinse is working out, When it comes to making it smell, the first rinse is an extremely diluted fabric softener, it imparts the light scent without coating clothes or towels but the second rinse of vinegar is the best, towels always come out soft and fresh. I can do two because I have to fill and drain my portable washer for all 3 cycles since it is not automatic.
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Tanya, glad you are feeling better after getting up and around and having your coffee.
I am also glad you like the vinegar. When I wash, I have to fill and drain between cycles so I do 3. Wash, rinse with diluted fabric softener for the light scent, does not stick to clothes and a final rinse of 1/2 cup of vinegar. Come out clean and soft with a light scent.
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Candy I have a brain MRI on Tuesday at MDA to see if Enhertu is doing anything. I have a video call Wednesday with the RO, assume I will get the results then. I could sure use some pocket duty. Thank you for keeping track ❤️
I’m trying to nap. Wore myself out taking pictures of stuff to sell on EBay. Probably nobody wants this junk but oh well. What else am I doing. Had a melt down this morning. Was going to make DH some quinoa oatmeal bars because I am tired of paying for Kind Bars. When I realized we didn’t have quinoa I just lost it. I think it was the nervousness of being on disability with reduced money and the upcoming scans. I get triggered by the most random things. Damn quinoa!!Cancer sucks. It will all be alright, one way or another. I really need to get a grip on my perspective. Hope everyone has a good week.
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Kikomoon, in your pocket for scans and results. As far as the meltdown about the quinoa, I don't think that is unusual for the stress you are dealing with both scan wise and wanting to know if new drug is helping. It does not take much to trigger a meltdown. I have them more often than I would like as well but know they are stress related and just move on. In other words, do NOT give yourself a hard time if you did for getting upset about the quinoa, money worries combined with cancer scanxiety will make it harder to cope. Meltdowns happen, you will try to breathe through it. 4-7-8 breathing, breathe in to a count of four, hold a count of 7 and exhale strongly for a count of 8 relaxes the body. If that is not possible, when you start getting upset, breathe through nose and exhale very slowly from the mouth, almost like a whistle but breathe out slowly, no need to count. It also relaxes the body and mind and can reset you so the thing that is upsetting you is removed. Disability does mean being conscious of money as well but that will all work itself out, I have to tell myself that often as I am not working nor in any affordable housing.
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Kikomoon- I am definitely in your pocket for your MRI. I'll bring the Kind bars.
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Tanya, Verzenio is new, I was only on it for 3 weeks before the surgeries and covid put it on hold, I've only been back on it for a few days.
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Kikomoon, in your pocket.
Don’t have much to report. Just wanted to say hi to everyone.
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Kikomoon, I’ll be there for pocket duty too, Tuesday & Weds. Don’t feel bad about the meltdown. As Mara said, you have a lot of stressors going on right now. I learned similar deep breathing exercises in a yoga class and they really do lower your breathing rate and give a sense of calm.
Hello to everyone reading. I’ve completed one whole week of my clinical trial and am already wondering if it’s doing anything. Scans aren’t until 6 weeks or after 2 cycles. I’m having some fatigue but not much else, and haven’t seen any results from blood draws so far. So I wait and wonder, like we all do. I did get some housecleaning done that’s been needed. Floor sweeping, shaking out small rugs, and vacuuming. Our house is not very big, but boy was my back unhappy with all the bending and straightening. I think it’s degenerative conditions more so than mets, but I have those too. I needed a nap when I was done. Maybe I have a lot of fatigue.
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absolute pocket duty. Good to see everyone. Feeling good or bad. It’s reassuring to hear from everyone. I am worried about grannax also. Glad to see BooBoo and kitty just checking in. Love to al
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Kikomoon, in your pocket for the brain MRI. Rosie, I'm hoping the clinical trial is working for you. It's so hard taking these meds/treatments and not know if they're doing their job, especially at first. Love to you both.
Hello to everyone, thank you for being here, it helps me to feel less lonely and alone.
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