My Husband, My Life, My Love, My Family, My Cancer
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sadiesservant, From a lurker who occasionally posts have you asked your doctor about supplemental O2 yet? I had to use it for several months. It was weird to be tethered to a tank but it certainly improves your energy and QOL. Medicare won't pay for a portable oxygen concentrator but I bought a used one and sold it on when I no longer needed it; it made the end cost reasonable since they are pricey to rent. That would enable you to walk Sadie. It depends on the state of your lungs but a steroid inhaler sometimes helps by cutting down the inflammation to make breathing easier; that might be worth a try. I hope you can do something to decrease the SOB.
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Sadiesservant- I sure understand about shortness of breath. Your body is telling you to rest - don't ignore it. The stuff you need to do won't mind waiting….
Hugs to all who are struggling🤗🤗🤗🤗🤗
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Kitty, I'm glad you're home. So sorry you lost your voice and that treatment for that has to wait. Just another frustration in the seemingly endless list.
Mel, Ouch! I hope they can get that thing out soon!
Mara - Drop your eggs in a bowl of ice water for a couple minutes. It helps the egg shrink away from the shell (but will still be hot) and are easier to peel. Also, there a trick where you can ease a spoon between the egg and the membrane of the shell (after you've gently cracked it all up and created an opening), and work the shell off that way. It takes a couple of times to get the hang of it.
We went to Ft Worth for DH's orthopedic appt. We had to stay overnight due to the distance and an early morning appointment. He's officially scheduled for two knee replacements - three months apart, if all goes well. The first one is not until late July, which was a little disappointing, but the bright side is that we won't have to worry about recovery time before our family cruise.
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Sadie, still in your pocket as you need me alwlays sending love and good thoughts.
Mel, I am sorry about the gall bladder, hoping it eases up for you.
Seeq, I will try that next time I try a hardboiled egg.
I wound up missing out on older DB and going out last night, was sick to stomach so I cancelled. I felt better soon after so must just have been something I ate that did not agree with me. That is OK, I went to bed earlier. I plan to walk some today once laundry is done. Stores are closed of course but that is OK. Another thing I discovered is why I will never get fast food delivered again. I was looking at some burger meals at both Harvey's and Mcdonalds. By the time the meal price and fees for service and deliveries were added on, it was close to 30.00. No burger meal is near that. Not that long ago, the price was around 16 to 18 dollars. Better to buy and thaw frozen burgers, get hamburger buns and cheese and buy some onion rings. Get more meals out of them and it would taste better, heck, get the pepsi and I have the meal from harveys but for less money per meal.
I am planning a couple outdoor walks once my clothes are dry and have had breakfast, stores are closed anyway. Trying some chopped black beans in my pancake mix with some beefless ground. I will let you know if it is good or not, also thinking of making a pancake from my oatmeal as well, we will see. I may also put another grocery order in from Walmart delivery, 12.79 to have delivered but I have not been shopping in almost 3 weeks as I did not buy anything with older DB when we went to Costco. We will see, waiting until next week anyway.
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Hi Mara Hello SeeQ~. I agree Mara delivery is ridiculous! I only do it when I have too. Most things are open around me. I have to go Walmart today to pick up my order. I decided to do Easter baskets for my two older kids. They’ll get a kick out of it. I miss when they were young. Have a safe day if you venture out. SeeQ good to see you. Hope things are smooth in your world. My doctors appointments start today. Bloodwork and xgeva today.
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Believe it or not, the pancakes that had some beans, wheat bran and cheese do not taste any different to me, just made in the sandwich maker, one at a time. Will add a bit or butter and syrup and that will be a nice size breakfast. Eyeballed it a bit when mixing. I can see the use for pancakes, whether a savoury or sweet type, use as a bun or whatever. There were two of them total, they did not overfill me and as said texture and taste still reminded me of normal pancakes. I am so glad I bought the sandwich maker, much easier to do up eggs or anything else in there than a fry pan. I plan to try some premade oatmeal in there with seasonings to make it savoury and add beans to it, should come out as crispier oatmeal I would think. We will see, will not be sweetened at dinner but made into it's own meal. I will figure it out later.
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Kittykat-glad to hear you are home but now dealing with loss of voice. I hope all treatments start soon to ease some of your issues.
Mel- you have appointments and such on Good Friday? Nothing is open here! How is the gall bladder pain? Take it easy.
Sadiesservant- in your pocket with the daily struggles you have been going through
Wishing everyone of you special ladies a Happy Easter! May we all have a weekend of peace and comfort.
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I don't actually mind the cost of the delivery due to surveys paying in USD. It is less than instacart as there is no tip involved. I also do a survey site that lets me redeem 5.00 for 3.75 as well so there is that. I don't pay out of pocket with Walmart delivery and usually only shop once a month so it really is not bad.
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Living~ yes had bloodwork and xgeva today. Just got home. Tuesday I scan (again) and I see the surgeon for the gallbladder the 13th. It’s been miserable and hope they want to take it out for me. I don’t want another attack.
Mara~ I’ll pay delivery fee also. I’d it’s something I really want ! Lol.
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Yikes Mara! $30 for a burger meal seems really steep, I agree. I usually drive through Jack in the Box or McDonalds and get french fries after my injections at the cancer clinic. Not always, but on the appointments they have trouble with blood draws and the Faslodex injections I do. Things have gotten so expensive I don't do fast food very often and am finding myself making more food at home.
I saw the MO yesterday and told him about my dizzy spells, weakness and tremors. When I am really fatigued the tremors are so bad I can't write or type. He offered to stop treatments since I have been stable for over a year but I felt like that was too risky right now. I would hate to do that and then regret it. Instead I am going to drop my Verzenio dose to 100mg from 150mg and he is looking into whether I can take the new SERD elacestrant (Orserdu) instead of fulvestrant. He is pretty sure it is the fulvestrant causing me most of these issues and so I am excited there may be another option to that. I would not complain about not getting two shots in the butt every month either. That's for sure. So we'll see. I feel pretty good about that decision.
Not much else going on. I went to the Harry and David store the other day and they had these cute fabric rabbit baskets on the clearance shelf for $2. I may go back and get one and fill it with cookies as an Easter basket for my parents. I got over 50 Myer lemons this year from my two trees so today I'm making lemon curd and ice cubes from the juice and am drying some of the peels to grind into seasoning and using some to make a cleaner from vinegar and lemon peel.
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Emac, not worth the price tag. I did put in a fairly large order on Walmart, extra peanut butter, got a couple of frozen pasta dishes, hamburgers and buns, cheese slices and beans among other things. It was 50.00 but I have spent nothing yet this month and the delivery charge was lower for tomorrow, today was all booked up or would have had it delivered today. I was not able to see older DB as stomach bothered me last night, but I will find something too buy next time I see him. Also ordered onion rings to simulate a burger joint meal. Just is worth purchasing, seeing each burger, not including rest of the meal is nearly 10.00. No way. If I am dying for it, can purchase pepsi later on. Just have to organize my freezer better to accomodate these purchases and set my alarm to pick them up at the door.
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Mara~ hope your stomach is feeling better today. I also did a pick up at Walmart this morning before bloodwork. Bloodwork Came out really good. So the scan should follow. Which is nice. I already know half of me is stable. From mondays er trip.
Emac~. Good to see you as well. Sending hugs for Easter.
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Mavericksmom, There is something called a hypnogogic hallucination which happens when someone is almost asleep. It's fairly common and harmless.
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wren~ always good to see you. Sending Easter wishes and hugs
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Just checking in. Spent Thursday and Friday in El Paso for appointments and treatment, just planning a relaxing weekend for now. Next week DH and I will resume our daily walk and try some new mostly vegetarian recipes, to reduce DH’s meat consumption a bit. Also prepping the bedroom walls for wall panel installation soon.
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Morning all. Easter Bunny day tomorrow. 😊 I made a stop at one of our high end chocolate shops on the way home from the Cancer Centre the other day. Just felt I needed a treat.
Finally able to see my CT scan results. It turns out the new pleural effusion is in my left lung which, up to now, has been clear. Bummer but it doesn’t seem to be causing a cough yet which is a relief. In addition to the worsening situation with my right lung I have some ascites. It appears that I have general edema starting throughout my body. I am definitely retaining fluid in my legs which I’m trying to reduce. I’m hoping part of the problem was that I was eating more processed foods when I wasn’t feeling great. They tend to be high in sodium so cutting them out seems to have helped a bit. I’ll reach out to my GP next week to ask if I should be on a diuretic. I’m also trying to taper down the steroid which can contribute to fluid build up. Wish me luck!
Sending everyone hugs for a lovely Easter weekend.
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thinking of you Sadie.
Hello Mae!
Hi Mara!
How’s Candy?
Happy Easter everyone! 🐇🐣🐰.
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https://www.ucsfhealth.org/education/guidelines-for-a-low-sodium-diet
Sadie, I am sorry to hear this report for you. Salt and steroids both wreak havok on water retention. I remember that too well the times I was on steroids. I found a list of different low sodium foods if you do not have one and other than that, water is your friend but you probably know that too. Canned veggies can be OK if rinsed off or frozen veggies as well. Link above of what is high in sodium and what alternatives there are instead.
Hi Mel and Mae.
Nothing happening here over Easter, I like the quiet holidays here. Unless my brother moved somewhere with stair rails and cushions on chairs, I prefer to be here or go out for supper.
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I was never able to have steroids. They cause me a severe reaction. I can only imagine the havoc it could do with retention and tapering down. I'm having crab cakes and roasted potatoes and Brussel sprout salad and pot roast for dinner. My two kids will be here. DH makes wonderful crab cakes. I'm looking forward to having both kids together. thinking of you Sadie !
I hope my stomach agrees with my little portions…..
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Hi ladies. Hope that everyone has a beautiful and hopefully warm, Easter weekend.
This is my first time posting on this thread. I have followed you gals since 2019. Initially I was staged 0, as I had Encapsulated Papillary Tumor. Well in 4 years I went from Stage 0 to Stage 4. I just rec'd the preliminary biopsy and it looks like the papillary is now considered micropapillary. Lists Er+ and Pr+, waiting on the HER2 status. I had gone to the hospital 3/10 for what I thought was a partial bowel blockage. Prone to them courtesy of MS. Surprise that I was in a cot laying in a hallway with 20 other people (with the exception of my husband), when an attending came over to me and announced you have Stage 4 metastatic cancer. Geez, he not only violated my HIPPA rights as everyone heard him, I didn't have any support. I just couldn't absorb what he had just said.
Fast forward to now. I'm the proud survivor of 9 days in the hospital, pneumonia and lots of fluid in the pleura lining. I have a chest port that is horribly uncomfortable to down right painful. I'm a very small person and not much room for that contraption. It gets under my diaphram and interferes with sleep. I am so tired. Pet scan Wednesday and tentatively scheduled to start Keytruda pills?? and shots to strengthen bones as we believe it's in my bones. I question that as I've had many rounds of solumedrol and taper prednisone due to MS. At the moment it's a 5 cm tumor in right pleura that's a certainty.
Guessing how this happened, well I recall reading that they need to use a wide extraction needle to keep from seeding as papillary cancers are fragile and break off. I removed both breasts but declined AI's, again due to interfering with MS. It's come back to bite me in the arse..
Thanks for this lifeline and hope to make some friends here.
Irishlove (Laurell)
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Irishlove~welcome to our second home. I’m sorry you have to find yourself here. But you’re more than welcome. I hope once you can get things settled down with your plan with keytruda, things will calm down for you. I know when I was first diagnosed, it was a lot. I hope you’ll find comfort in knowing we understand and are here. There’s always someone to listen. Sending my best. And hugs.
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irishlove, I am totally pissed by how you were informed that you are now stage 4, it’s unbelievable and I’m sorry. You are very welcome here but I’m sure you already know that (and know us) since you’ve been here for some time.
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Mel- Thanks for the shout out. I am still here. Reading along. Welcome Irishlove.
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Irishlove, not only were you informed where others could hear, your DH was not there with you. I am so sorry you found out this way, it doubles the trauma and fear hearing those words. You will find a lot of positive support here. We are always in your pocket, our way to say our love and support goes with you. We are an extension of family as well. Talk about whatever you need to no matter what, someone here always answers. Take it one day at a time, one appointment at a time as you start to get more info on future treatments etc. More info is the start. Remember what someone told me, you are now living with cancer, not dying from it. It removes some of the fear toward treatments etc.
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Nothing going on here for easter which is fine, I don't mind a quiet day of laundry, surveys and possible Amazon delivery of peanut butter and freezer bags. I don't fully expect them but today was the day given, we will see, Walmart was sold out.
I expect to make up burger meat this week. As far as oatmeal, I think it could be hidden in the beef as long as it is precooked. Stretch it out a bit without completely changing the taste and eating along with black beans of course. I have found that with the pancakes, I need to take a walk after or there is a drastic drop in blood sugar which is no good. Short walks around the block will be best for me I think since I am waiting on deliveries, it is beautiful and sunny here. Catching up on laundry as well.
I am planning to try to make a meal with microwave popcorn as an ingredient, basically make a bag of the popcorn, put in containers when cool and put as an accent to a bean, spinach and beef meal or whatever, melt some cheese in there as well. Probably blend the bean, spinach and beef together, put over top the popcorn and warm in the microwave. I'll let you know how it tastes.
Happy Easter for those celebrating it, if you are getting together with family or not, enjoy the day.
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Irishlove, I second mara's words ; you are living with cancer. Everyday is a day nearer death for everyone , but some of us here appreciate the life we have more . Doesn't mean we dont wallow in self pity , frustration or anger ,but if it becomes too much we understand that there is support here when we need it. [We also enjoy hearing about lifes pleasures.]
I hope Easter weekend is going well for you all.
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well said ladies. Well said
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Weirdest meal combo but it does taste good. I keep forgetting the spinach in the mix but here goes. 1/3 cup black beans, 1/4 cup beefless ground, 1 tsp of Walmart peanut butter, italian seasoning, garlic seasoning, taco seasoning and a bit of salt. Wheat bran dries a moist mixture a bit. I put the Walmart peanut butter in because I felt it would not affect the taste too much. I do not enjoy the taste of the peanut butter from Walmart but it is an inexpensive way to boost protein. It also allows me to avoid wasting the product as well. I bound with a bit of mayo and ketchup to make it a bit sweeter and counteract any excessive spiciness.
I forgot to mention that a slice of cheese was added as well. Cannot complain and is a good meal. Sort of the texture of cooked ground beef which works well for me. Edited to add that is was really good, even with all the seasoning, only going to use less italian, think it was a bit much. Did not taste the peanut butter but glad I can use it up instead of throwing out.
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Today feels more significant to me than other years, the hope that I will be reunited with my sweet husband is very strong and calming this morning. Happy Easter and Spring to everyone, renewal and a new season to appreciate.
I'll most likely be getting a vertebroplasty soon, for a mild compression fracture that isn't healing and is causing me some pain. Started on a low dose of tramadol, and that's the first time I've been almost completely out of pain in a month! Pain sucks. As so many of you know.
When I was waiting in line at the pharmacy, a woman said she and her mother were admiring "how put together you are, it's refreshing"!! I can't recall the last time a stranger offered me a compliment, and I wouldn't say I was dressed up, had a nice long blazer on with a scarf, and just had my hair cut in a really short pixie style (best look for my very thin hair, methinks) with long earrings. It was so kind and made me smile a lot.
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Wow, so much going on. I know I'll miss someone and I'm sorry for that.
Laurel, welcome. Stage IV is, indeed, a punch in the gut. Some of us spend a lot of time here just hanging out. Sometimes we laugh, sometimes we cry, sometimes we just vent. It's all ok.
sf-cakes, your post made me laugh. I have this recollection of a dream recently where someone said that I had really let myself go lately. (At least I hope it was a dream!)
We drove over to see my dad Friday night. Went out for Thai food. Ate more than I needed to but didn't care. It was that good! Then yesterday afternoon, DH was on the back patio and the neighbor across the greenbelt invited us over for drinks at 5:00. Super nice couple, with her brother and SIL there. We told them we were driving back to San Diego that night, so they invited my dad over for Easter dinner this evening. I'm so glad. He really likes living there, but I think he's lonely.
We're going to our neighbors' place for an Easter brunch at around noon. There will probably be about 80 people there. I love these people. It's a little sad that last year I sat next to the wife of our County Sheriff. She had cancer, too, and we talked and laughed about all "fun" cancer was. She died late last year. She was a wonderful woman and we all miss her. Of course, in the back of my mind I wonder if this will me MY last Easter.
I hope everyone has a good week.
Carol
(Sorry if I've repeated myself from another post. I can't remember.)
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