My Husband, My Life, My Love, My Family, My Cancer
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I'm at 7 1/2 years now. So far, still have a great quality of life. Thankful for every day.
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Emac, glad they are on board with the Pleurix draining, will make breathing better for sure.
Irish, in you and daughter's pocket for the disability lawyer and filing again.
SondraF, I can empathize with the feeling of things going easily for others. Please know that you are not a career loser due to the cancer. Replace that thought with how much you get done with what you are dealing with. I imagine the person that things seem to go easy with could not handle what you deal with. You are not a zero but a hero with how you handle yourself with this disease.
Goldens, glad the steroid injection is providing some pain relief, in your pocket for the knee replacement.
It is a nice day here. DB offered a shop/walkaround Costco so of course am going to go, walking will be good for me. Maybe there will be more of the Jane's fish there. Not enough laundry to do yet but will toss in clothes and pj's with the other cloths. Made the rice smoothie for the cats, pkg of whiskas perfect portions with little bit of water. Will give it a couple times a day in between regular feedings. Wish Tigger could behave himself with 2 meals a day but he eats all of his bowl and promptly empties his stomach so that is the reason for small amts throughout day.
I think I will simply save a meat pie as I am blank for what to make, add some of the remaining black beans, also got actually ground beef and english muffins pulled out of freezer, need to cook those up as well post break. I will prepare the ground beef and just use it over next couple of days. Might just keep it simple and make an egg sandwich by toasting the english muffin and cooking egg in mini griddle, save a bean and beef type of meal for dinner. So can cook up beef this afternoon. Drain grease into a container that will be tossed later.
Hoping everyone has a good day and in pockets wherever needed.
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Chicagoan ~nice to see you. I’m so thankful that your quality of life is good for you. That’s what I believe we all should look to strive with this disease. I’m sending you hugs because you made me smile. Thank you
Hi Mara~ glad things are ok with db. Nice to hear when you are out and about with him. Hope you’re having a good day
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Micmel-Thank you for the hugs! Hugging you back.
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Hi everyone. I’m not posting much today because I haven’t been up to reading. Just not up to typing today either. I did breeze thru fast and noticed your loss @intolight. I’m sorry.
You are all in my thoughts and prayers for stable, pain free, peace and joy and especially restful sleep… @candy-678 , @chicagoan @sf-cakes @wren44 @threetree @mara51506 @micmel @cookie54 @sondraf @sondraf @emac877 @illimae @eleanora @irishlove @goldensrbest @gailmary @tanya_djamila and all who visit here.🩷💜🩵💙
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I guess I posted on the wrong thread earlier but it happens. Hope everyone is having a great day!
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Boy, once they decide to move on something they move! The catheters are going in tomorrow morning. You would think that at this point in the game I would have learned not to YouTube the procedure but, no. So I am a little freaked out that it is done under conscious sedation. I'm trying to tell myself they use a lot of lidocaine and it probably won't hurt, too bad. Anyway, the order is for two, one on each side. I'm just hoping it's not too hard to sleep with. I typically like to lay on my left side. My instructions are to drain them daily. I am in hopes this solves the breathing issues.
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Hello all you fabulous folks. @sondraf You are more than enough. You are so compassionate and strong. Fighting this disease isn't for the faint of heart. Changes from working to being ill is difficult. But your job now is to take care of yourself. @shanagirl Oh it's good to "see" you. I hope you are holding your own. @chicagoan 7 1/2 yrs. And a good life is such an inspiration for others. I'm so glad you shared this with us.
@emac877 Here's what I recall from the surgery for the cath. I feel asleep during the surgery, didn't recall it at all. It was a tad sore for a few days afterwards, but draining so I could breathe made it so worthwhile. I suspect you'll have to sleep on your back. I had just one cath, but I definetly could not sleep on my side. Use a lot of pillows to make you comfortable. Getting out of bed was uncomfortable for sometime. When you drain DO NOT open the tube wide. Keep the roller in your hand to control the flow. When it gets closer to having drained the fluid, slow the tube down. Otherwise you will find it painful. I found it easier to have DH do the draining. Best wishes. PM me if you want to talk more.
Happy to report son-in-law was hired at Home Depot. Not his ideal job, but he's super smart in so many aspects of home building, repairs, etc., that I know he will be a great employee. Here's to moving up the ladder quickly, and paychecks! b
In pockets for all with scans and other support. You folks are my life line. The words thank you don't do your support justice. Wish I could hug you'all.
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Awake at 6:30 est and ready for pocket duty for the cath procedure. You've got this! You'll be able to breathe and give the treatment a chance to work.
I was also a life-long left side sleeper, but my right hip replacement in 2019 forced me to sleep on my back for about 6 months. As others have said, pillows, pillows, pillows. Sturdy ones under your knees and softer, thinner ones under each arm. These will keep you from rolling to the side in your sleep.
Please post as soon as you feel up to post-procedure. 💕
Sorry you're not feeling well enough for your usual chatty post. I always look forward to hearing about your painting and family fun. I don't know if you noticed one of the recommendations I was given forward the day of Faslodex/Xgeva injections. I was told to add Pepcid AC to the Claritin I was already taking. A small and easy thing to do, and I think it may have helped.
So happy that your son in law was hired. Paychecks and increased self-esteem to follow. I really admire your kindness, strength and patience in dealing with difficult issues on multiple fronts. You are a very strong "glue" holding your family together.
I have been on my current treatment for 20 months and at my last appointment my MO reminded me that this type of treatment "usually fails at 24 months" - thanks Doc! Reading and re-reading your story and those of other long time successes are beacons of light in my current gloom. Thanks for the reminder 😉
Hope everyone has a calm and cheerful Friday.
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Emac pocket duty for your catheters.
Eleanora what’s the name of the treatment you’re on? The medication I started with ibrance was only first used in 2014 so there weren’t any long term recommendations but there are people who’ve been on it since its beginning. Drs bedside manners are awful.
shanagirl I hope you feel better soon. I love and look forward to your paintings and posts.
My daughter had to go to a training for work in Orlando so my granddaughter and I tagged along for the Hilton amenities. I’m on my off week so I figured I can go shopping do a little of this and that sit by the pool. We added a day to it. It’s a cute little staycation for two couch potatoes. GD has muscular dystrophy.
have a good day all
Tanya
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emac, In your pocket for the surgeries. I don't remember anything about it so I may have had more anesthesia. I don't remember having problems laying on my side except at the very beginning. Keep a chart of how much drainage you have on either side. Hopefully you'll have awesome results and will be able to go drainless at some point in the future.
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Sondra, your neighbor sounds like a narcissist. It’s all about HER and HER wants. Furthermore, it’s a goal of “those people” to make us feel like losers.
I was able to schedule my brain MRI for the 19th. These headaches are not getting better. PET scan is on the 22nd. I’m waitlisted for an earlier MRI, but I’m OK with the 19th. When I thanked the MRI scheduler and told her I hoped everyone would be kind to her yesterday she thanked me and said, “God bless you.” I feel for those people. They can only fill empty slots and they can’t magically create space where there is none. I pray that I will always be kind to these people…
Irish, It sounds like you’re getting some wise counsel regarding the disability. It sounds like a real pain of a process to get it approved.
Emac, I’m glad/not glad you’re getting the catheters. They sound like they will be helpful, but they also sound painful. But maybe less painful than the weekly drainings.
I really need to get outside today. Weather is fine, so I have no excuse.
Waving “hi” to everyone. Even if I don’t mention you by name, I see all of you lovely ladies!
Carol
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Shanagirl, hope you feel better soon as well. In your pocket.
Emac, they sure do move fast once a decision is made for a treatment, in your pocket as well. Sleeping on your back will be good and should not take long to get used to. Just place a pillow under your knees, takes the strain off the back, does not need to be huge, regular pillow like what you would see on a couch.
I am unsure what is happening today, went to bed late due to falling asleep after eating reese peanut cups and chocolate ice cream at costco, finished maybe a quarter of that, very filling. Bought myself a treat, haagen Daz almond and vanilla bars, should be good. More eggs bought and found the fish I like. Chris brought in groceries as usual. Nice visit, this time Kelly brought up getting another stepbench for getting into bed. She said she could find one cheap, I will allow, was quite surprised since last week we were not to talk about it. She does not want me to remove the stepbench I have between living room and kitchen.
Another thing that happened was bad and good. A large picture, canvas and wood fell on my head to the floor, I wound up stepping on it as well throwing my balance off. Picture falling was the bad thing, good thing was maintaining balance on an uneven surface, no falling, I was not hurt and could put picture back up.
Today, breakfast is an english muffin, buttered and toasted with chopped beans that I squished on top, once cooled, adding peanut butter, I do enjoy peanut butter with beef or beans. Managed to find Janes fish at Costco as well.
Edited to add that the english muffin with butter and beans then topped with peanut butter was really good d filling, You really don't taste the black beans but just notice the texture under the peanut butter. lost some chopped up beans do to carelessly tossing the chopper in the sink before looking.
Hope everyone has a good day and in pocket for everyone needing me.
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Sunshine, in your pocket for the MRI to find the source of these headaches.
Sondra F, I sure hope the neighbour has not made you feel inadequate in any way, nobody should feel bad about having issues from illness or anything else. In you pocket making faces at the neighbour.
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Emac-Best wishes for your procedure. After a week or so, I was able to sleep on my side with the catheter. When the incision was new it hurt, but after it healed, it was perfectly comfortable, so I hope that you will be able to resume side sleeping. They did not allow me to drain my catheter myself for several weeks. It was a pain having to wait for a visiting nurse and then to have to remind the nurse to WASH THEIR HANDS. It made a tremendous difference to be able to breathe easier.
Tanya-Sounds like you'll have a blast in Orlando!
Irishlove-Congrats to your son-in-law on getting the job. It's a new start and I hope it opens more doors for him.
Sunshine-Hope the MRI provides needed info to resolve your headaches.
One of my dear friends who has never drank or smoked, eats the most healthy diet of anyone I know and exercises an incredible amount was recently diagnosed with breast cancer. They initially thought she was Stage 2 but thankfully, after surgery have now downgraded it to Stage 1. Like all of us, she was beating herself up wondering what she had done wrong. Nothing but it's hard to accept at first. I'm glad she has a good prognosis.
Here's to a pain-free, happy day for each of us.
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Chicagoan, I am sorry for your friend but glad it was downgraded a stage. In her pocket and hopefully she will come to realize or be told that cancer is not usually caused by anything but a faulty gene. No point blaming herself but look ahead to what treatment or surgery may look like. Easier said than done.
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Emac- Please add me to the list of those in your pocket for the catheters. Wishing you all the luck in the world, and that you will be able to sleep on your side again at some point.
(My original tumor put so much pressure on my side that I had to stop sleeping on my side before the mastectomy. Five years later now, I can still only sleep on my back. I don't like it but have gotten completely used to it.)
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Also wanted to thank everyone again who offered congratulations on what I believed to be good scans, after reading radiologist's report. The oncologist did confirm yesterday that the scans were all good, as was my blood work. A sigh of relief for the next 3 months hopefully.
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Awesome threetree. Keep the good news coming ladies.
Emac~ in your pocket for extra support. Hope it’s easier than you think it will be. Here’s to better breathing ! Hugs.
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I am on Kisqali, Faslodex and Xgeva. I have bone mets only and have been stable since the start of treatment, so was beginning to allow myself a little bit of hope. Guess not.
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eleanora, you have every reason to have hope. I have been stage IV for almost eight years now, and continue to hope for more as I am stable right now.
emac, I will join the others in praying for your procedure. May the catheters provide you with easier breathing.
Threetree, yay for stable!
irishlove, good news for your son-in-law. Hopefully this will relieve stress for your whole family.
chicagoan, I too am 7 1/2 years in…8 in May. Although some days are rough, I am thankful for what I can do.
It snowed again last night and is very cold today, but I had a good dental report yesterday so I am happy. Not happy about losing an hour this weekend though. When will they finally stop this nonsense?!
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Waving hello to all you sweethearts. I caught up reading as we had a number of posts. Now to remember what's going on with who? lol My brain, she are no good. @tanya_djamila It sounds like a wonderful time for bonding with your granddaughter. I imagine it was hectic getting to Orlando and thru that airport. They had cheerleading competition today in that area and lots of flights coming in. I hope your granddaughter is doing well with the newer treatments for MD. We have a family member that is around 23 now with duchennes muscular dystrophy. He is a Mennonite lad and speaks at churches on his faith and the strength to stand up to this disease. We are so proud of him. His father is a Mennonite Minister and they have a choral group, too. I pray your g.d. and our grandnephew have many years ahead of them with new drugs to stop that disease in it's tracks.
I had a good day. Yesterday I was so shaky and full of inflammation. Awful truncal lymphedema. Today I took MSM with tumeric and chondrotin capsules. I noticed a difference quickly in the inflammation and shakiness. I wrapped myself and put sleeves on to control lymph problem. Yeah, I had a good day. It will be one year March 13th since stage 4 diagnosis. I believe I crossed that corner of constant fear and hit acceptance. I still read alot and of course hope and pray for stability for all of us. In pockets for scans and cheering on the good news we all celebrate together.
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Thank you for the encouragement. I hope you have a wonderful time with your granddaughter. You are making terrific memories with her.
Hope the procedure went well and you're resting comfortably.
Glad that the MSM was helpful. How much do you take and where do you get it? Is it a prescription? I was warned never to take any kind of supplement, but I see so many on here having good results with them.
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Morning ladies, dreary day here but hoping to catch rays of sunshine today! We are taking a drive to a wonderful Lab rescue I found in Pennsylvania. They hold an open house once a month to meet the dogs, the search is on…
@emac877 Thinking of you, hoping all went smoothly and you get the relief you deserve.
@tanya_djamila Glad you're getting away a bit, change of scenery is always a nice break from reality. Enjoy your time with your DG and I hope the weather is beautiful!
@irishlove Congrats to son in law landing a job! You never know where this can lead to for him or sometimes a stepping stone. Either way money coming in and less out is good for all! Hope its a good day for you and I crossed over the constant state of terror around a year also. May we all continue to count the years in stage IV.
@chicagoan Of course it stink that your gf is in the awful club but glad it was caught early. i'm sure she will appreciate all your knowledge and find comfort.
@sunshine99 Ugh sorry to hear the headaches aren't improving. Hope the 19th comes quickly for you or maybe even sooner. Hate the stress of testing and waiting! We will all be in your pockets for a good scan. Hope you caught some fresh air yesterday.Hugs.
@intolight Ugh snow, hope that's it for the year!! Agree love the spring forward with more daylight but enough with the old school changes with the clock. Yaay for a good dental visit, lately I feel like my treatment is catching up to my teeth. Now when I go I feel like… hmmm let's see what they find today lol.
@mara51506 Sounds like your strengthening exercises are definitely helping! Happy to hear that all sounds good with your family.
Hi to all here , sorry if I missed anyone today. Wishing all a peaceful and relaxing day. Spring ahead🌷
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Candy~ How are you doing? Haven’t seen you much. Thinking about you. !
Emac~ Hope you’re recovering and doing well.
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I have to start a Word doc to make sure I keep up with all the comments.
Threetree, I’m so happy your MO agrees that your scans and bloodwork appear stable.
Mel, I hope you have a decent, peaceful day.
Eleanora, I hear you with wanting hope. I think we always do, even if it’s just for peace in the storm.
Intolight, congrats on the good dental report. I agree about the DST nonsense. I thought we voted to keep Standard Time, but apparently it takes more than a vote to change it. Sigh…
Waving hi to emac, irish, Chicagoan, mara, cookie, candy, and anyone I’ve missed. DH comes back from his skiing trip today. He had dinner with our kids last night and her dad. Sounds like a good trip.
I had another idea for a blog post yesterday. It just started spilling out—the title is Side Effects. I’m amazed at the number of drug ads that are shown on TV (I basically watch only HGTV) and my FB feed. They all seem to end with “such and such side effect may be serious and may lead to death. Don’t take if you’re allergic to it.” Thanks for the warning.
Love to all,
Carol
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three tree, good news.
Emac, in your pocket for better breathing as we all are.
Yes, US tv usually does have all side effects listed for different drugs. We don't have them in Canada. Our problem is they like to advertise a drug but don't tell us what it does and pushing us to look it up ourselves. I have long since stopped looking up stuff I do not need to take..
Sunshine, glad your husband enjoyed the trip.
Not doing much today again besides the indoor exercises and basic chores, trying to stay on top of laundry, tend to put it in and forget about it which is dumb, also need to stop leaving dishes to soak overnight in the sink, delays breakfast since I need to clean them first.
Going to have fish, beans and an egg, probably 1/2 piece of fish, cook up the fish first in little oven and then chop up beans with croutons and add an egg to presprayed plate, cover with lid and cook for two minutes. The other half of the fish can be used later in a pancake fish taco sort of riff, who knows.. Have to remember to use big oven as needed too, just have to take stuff out of the oven first if cooking up two things at once.
Hope everyone has a good day and in pockets for everyone.
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Thank you for the prayers and pocket duty. Everything went well yesterday. I have a catheter on each side. Last night I was really sore, it's better today and I can't believe how much better I feel having the fluid off my lungs. I was sent home with two bottles and told I need to drain them every day and that more would be shipped to me. I think I will skip today so I don't run out of supplies over the weekend and drain them on Sunday. I was shown how after the procedure and given a fold out step by step of how to do it but my brain didn't retain the info very well. I'm glad I have the fold out with pictures. My friend bought me a pregnancy pillow that looks like a big 'U'. I used that last night and it was great. I could sleep on my side but roll back enough on the pillow to avoid being directly on the catheter and it gave me something to put between my knees. Who knew? It's not something I would have ever thought to buy.
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Thank you, Mel, for thinking of me.
I posted here on March 2 ( I scrolled back to see the date). I read on here every day, but sorry to say I do not comment much (Sorry!!).
I am doing ok. Plugging along. Went to church Wednesday evening. Masked of course. Small group- only 20 people. I may go to church this Sunday. I am still not eating out (will I ever do that again?!). My arthritis is bad anymore (hip, shoulders, thumbs). I struggle with that more than the cancer right now.
It is noon here now, and I have been up since 6am. Doing laundry and stuff around the house. I can feel a nap coming. I am about tuckered out. Geesh, and I am only 53 years old. I feel like I am 80 anymore.
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Thanks for the well wishes everyone, they meant a lot. I think its just the time of year, too, this feeling of renewal and change but halfway melancholy as well, remembering the (recent) past where perhaps I would have easily gone out for a drink with a friend or arranged a lunch with work buddies. Sooner or later I will WILL be back on the horse and this leg will be working and I will be doing new things with new people and going new places, like everyone else. Right now every day feels like Groundhog Day, but I will know next Monday what is up and further steps post PET.
I had good news that insurance will fund another CDK 4/6 along with my fulvestrant (but apparently not the shot alone? dont ask me to make it make sense), so MO is going to go with Kisqali first mostly because of the concern over Verzenio side effects and my current physical/blood state. So we will see, but I advocated and chased down insurance for clarification so, yay me!
In non-cancer news, I just made a small batch of rice with my new, totally adorable, mini rice cooker. Its brilliant, doesnt take up any counter space, makes just enough for the two of us, or in this case, for the lime cilantro rice part of our Fauxpotle burritos. No more babysitting wholegrain rice on the stove and it came out perfect! Sometimes its the little joys in life :)
Emac - Im so glad to see you feeling more comfortable with that fluid off your lungs. Aren't those pillows just the best? I may need to get that giant U pregnancy pillow to add to the pile, but I can bend body pillow into a U for now and use that to prop my legs up at night. The cat also enjoys it haha. Hope you get a fab nights sleep!
Cookie54 - is this the search for the new addition to your household? Good luck finding the best possible new member of the family, we will of course all be expecting photos :)
Mara - I thought of black bean brownies and how those were so popular a few years ago when I read about your english muffin + the peanut butter on top. Experimenting with texture and food can be so much fun, even better when it works out!
Tanja - you are always going with family to somewhere lovely with a palm tree, warm winds, and sand. It sounds just fabulous and like it will be a wonderful time, enjoy!
Mel - I hope things are settling down a bit for your family? How is the planning coming along for your mother's life celebration party?
Those complaining about time change - agree! Although we go back in three weeks here in the UK, it makes it easier to call home when its only a 5 hour time difference. I just really dislike the first few weeks when its light later but not warm like summer where you want that time to linger. What's a little unnerving is how fast the year seems to be hurtling past; even laid up like this I cant believe I have to get out the Easter decorations shortly and this morning we were talking ham acquisition strategy (Swedish vs English) and scalloped potato recipes.
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