My Husband, My Life, My Love, My Family, My Cancer
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@mara51506 You are so busy and after major surgery! You put me to shame girl.
I am feeling okay after my second infusion yesterday, but that is what happened last week. Hoping I feel decent enough tomorrow to make it back to the hospital for the spinal MRI. I threw a load in the washer this am and hope to dust and take a shower before anything hits. I can deal with this regimine as long as the chemo works. My tumor markers came back yesterday and they rose again, but I only had one treatment so lets give it time.
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@irishlove - Your are going through an awful lot right now, and I'm so sorry. Not being able to swallow would be really scary, so I'm glad it didn't last long. Hoping all gets sorted out - maybe it was just a fluke sort of thing with the UTI? I sure sympathize with the drug delivery issue too. I'm switching from Verzenio that I got at no charge from the manufacturer who simply sent it in the mail via a specialty pharmacy, to Xeloda that will come from my clinic pharmacy, but a different location than where I go for treatment. They say they can't just send it in the mail, and they are sending it every month by courier and I am supposed to be home on those days and able to go down from my apartment, and out to the street to meet the courier who needs me to sign. My insurance covers it all, which is great, but the delivery issue is a mess and I'm going to continue to try and see if I can't simply get it mailed. I hope you get your delivery issue simplified too. A hug to you and good wishes for your upcoming doctors appointments.
@mara51506 - I agree with some of the others that you sound just a little "too busy" for just having had a major surgery. It's good that you have energy and are feeling better every day, but maybe slowing down a little bit would help. (I realize too that you are a bit younger than many of us, but still ….). I am glad to hear that you are happy to be back at home though and in your usual "action mode" and getting things you want to do, done. That's got to be a real plus for your mental health.
@intolight - So glad the second infusion went better and that it's looking like you have some more options out there in front of you. Your oncologist sounds so nice, understanding, and accommodating. I wish more were like that. Mine is really good that way too, but I know that many aren't. In your pocket for that spinal MRI tomorrow and sending hugs and good thoughts. You are going through so much right now and I admire your strength. Not sure how I will hold up when I reach the point you are at now. Thinking of you a lot these days.
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Got my first Xeloda delivery yesterday via courier. I'm dreading taking those first pills, and think I might wait until tomorrow yet. Tomorrow will be a solid week since my sternum biopsy of the bump that tested positive for "invasive carcinoma", and it will also be a full two weeks then since going off Verzenio. I like to think with those two things being a bit more behind me, my body can focus more on tackling the effects of the Xeloda. It's also just nice to have had a little bit of a break of some kind. The biopsy site though is still not healed, although not looking infected in any way. I just don't like having all these different things going on at the same time. I'd like my body to have some good energy, immunity, and only needing to focus on one major medical thing at a time. I'm really super anxious about what sort of side effects I might get too, but I'll never know until I try. I doubt that waiting one more day will hurt, besides I want to get to the store and take a shower today (like Intolight does before she goes to the hospital tomorrow), so I'm a little more prepared for whatever might come tomorrow when I start the drug.
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Good morning ladies! And SFcakes, nice to meet you! My last radiation was Monday. 💃 Had CT scan for my appt in 2 weeks with my oncologist yesterday . Also a bone marrow biopsy planned in 2 weeks. Does this fun ever end? I am grateful I have no medical things for 2 weeks. This all seemed to come in so suddenly after my 8 year hiatus from left lumpectomy., didn’t realize it could metastasis to my bones. Oh well. I am hoping I become stronger after radiation as I am so tired…..no appetite. I am hoping that comes back. Do any of you take a great vitamin to help build up your energy or body? I am putting you all in my pocket surrounded with love. I am not sure what the pocket thing means but hey…,as a newbie I’m getting in on it! Was able to get down a child’s burger from MCDONALDs. Not best nutrition but I needed something. Love you all❤️❤️
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Currently dealing with numbness in parts of face and hands, more of an annoyance than actual problem. I blame healing nerves post surgery for the weird numbness. I keep dropping off to sleep, anassthesia gets my blame.
I had a microwave frozen beef and tomato pasta dish, add beefless ground to it add bit of queso and bit of sour cream and lime. Threw my bowl into a sink full of hot soapy water letting it soak long rnough to just rinse off.
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the girl at front desk said bone biopsy but either way I have to thave it and buckle up for the pain.
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@threetree Oh I understand your apprehension about starting X. I remember feeling the same way plus it felt so strange to me to take chemo unmonitored. I remember telling my hubby not to go anywhere in case I had a reaction etc but of course I was fine! I am wrapping you in a big strong hug for the start tomorrow.❣️
@xsuzx Sounds like you have been a bit busy lately so I'm glad to hear you're getting 2 weeks off! We all need that mental brake to recharge. I don't take anything specific to give me energy but I know there are some ladies that use herbal teas etc. I hope you can relax and recharge on your break. It sounds like you have the meaning of "in your pocket" already as we are all by each other's side or in their pocket for support always!
@mara51506 Did they tell you to expect numbness post surgery? Should you be concerned or report it ??
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@threetree I was on Xeloda for a year and it was pretty tolerable. Of course there are exceptions, but you should be fine.
I am still feeling fair post second chemo. I have next week off. Last week it was day three that hit me hardest so we shall see what the next few days bring or perhaps my oncologist' adjustments worked. Finally started taking down my Christmas decorations. I work about 10 minutes then sit a while. My SIL will help me finish Saturday. I even cooked dinner tonight! I call that a win.
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@cookie54 and @intolight - I sure do appreciate the positive support re starting this drug. Thank you. Cookie, yes that fear of having a reaction, and it doesn't even have to officially be chemo for me; any prescription drug (and some OTC) will do this to me. I'm terrified that I will be one that has a highly unusual and rare response. I live alone too, so I get real worried about anything really bad happening any time from any cause. I know you've done well for a good couple of years or more, and that gives me hope for sure. I love your hug and am sending one back! Intolight, you too got some fair amount of time on this drug without too much trouble, and that helps me feel better. Ahh, taking down the Christmas decorations. That's what most of the people here in my apartment complex have started doing. Since I'm alone, I don't really decorate anymore, but I sure do enjoy the ones others put up. I love to look at the ones I can see in other people's windows every year, and then I'm always sad when they take them down. I'm actually looking across the way at the last tree that I know is still up. It's lights are on and I'm enjoying it still, but every night I see it now, I assume it's probably the last. Glad that things re your chemo regimen are looking up a bit, and have my fingers crossed that this will go well for you one way or another.
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Hi sweet ladies. It sounds like new beginnings are working out. What wonderful news. The support and sharing of information and positive drug interactions, gives us all hope. One thing that I have noticed in my almost 3 years of MBC, most of those that chose to go on hospice did so based on the side effects of the drugs. Just a general observation and I may be wrong. How I wish these manufacturers would spend more time in R and D, instead of pushing to market. Mayo Clinic is now offering a specialized radiation treatment plan, the first of it's kind in U.S. It's been utilized in other countries and is promoted to be an major improvement on treatment and less side effects. I can't recall all that I read, so please check into it if you would like to know more info. The Mayo in Jacksonville is where it's being offered. Can't help but wonder what insurance will say..
We spent half a day this week moving furniture and preparing to move plant stands into the house and by windows. Then today we covered what we could not move and DH lifted my beloved clover and Christmas Cactus into the house. I scooped up the smaller planters. There is one Mexican planter, rather large, that cracked due to the cold last year. We put a bounge chord around it and won't move it anywhere. I can picture it breaking into a million pieces. It has lovely mums in it. We carefully wrapped ground plants and put extra mulch on everything. Here's hoping they all make it. It's hard to describe how important they are to me. You might even catch me talking to them on a daily basis. I'm trying to find ideas for a covered patio that we could move them to and use a heater. It's gotta be something fairly inexpensive and tied into the lanai. Too old to keep doing this.
It is so bittersweet to see the decorations put away for another year. I wonder if I will have another year and DGD will be 12. Still enjoyable (LOL) to buy for and fuss over. Our fresh cut tree is still smelling lovely outside propped by another tree in the garden. The birds love it. In pockets for all your needs.
Laurel
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@threetree Not to worry, what I do is still in little chunks of time, sweeping and mopping take a few seconds. I do a lot of resting between a burst so am recovering and not shy about taking a nap as needed. I am the last person to push anything at this point. The major cleanout SIL did really makes it easy to maintain on the daily
Laundry being done, got some lysol bleach free disinfectant for laundry as I clean up hospital clothes, do one cycle of that, regular detergent for cycle 2 and the softening cycle. On to dryer. I am also starting a weekly blanket clean as well. All blankets save two can be spun in the bigger washer and dried a bit on one of my drying racks in living room. The other two blankets need the big ass spin dryer which requires me to put a container in front of the spinner to catch water, usually shut it off couple of times to dump extra water it extracts back into tub. This spinner lives in bedroom closet.
One thing that never shut off was my appetite, planning lentils or another form of beans, open up, rinse and perhaps take at least 1/2 cup of either and put them in the air fryer. No digestive problems now, even with the steroid, famotidine taken with it does keep my stomach from having pain, the immodium taken as prescribed has done its job as well. Enzymes and probiotics are helpful too. Back to eating my way without being sensitive.
Cannot wait until neighbour nurse takes out staples by Wednesday, think I mentioned she is a nurse on the floor where I stayed, she looked after stroke victims. Once those are out, will get my head trimmed, moisturized. And slap that wig on. I have had to wear loose head scarf, little head gets cold at best of times.
I hope all have a great day, it is cold and we got a huge snow dump but imagine that cleanup will happen soon. I am in everyone's pockets and own to keep up with stuff, rest between small chunks as well.
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When it rains, it pours. I'm going to start the Xeloda here in an hour or so, and I can't get my computer keyboard to work. I changed the batteries and moved the "dongle"to another USB port, as that worked the last time this happened, but it's not working this morning. I know it has a "virtual keyboard" too, but I couldn't figure that out for love nor money, the last time I dealt with this. If I can't figure something out I'll have to pack it all up and take it to Best Buy. On top of that, my bathroom sink is only giving cold water, as something has gone wrong with the faucet handle. I don't want to call my apartment maintenance people yet, because I'd have to clean the bathroom at least before they come, and due to the still unhealed biopsy spot on my sternum, I'm not supposed to do much movement of that area, and cleaning requires a lot. Additionally, I don't want them in here at a time when I don't know how the Xeloda will affect me, and I could wind up with diarrhea, nausea, and/or vomiting. Hardly need other people here working on the bathroom at a time like this.
Oh well, things will eventually work out one way or another, and it helped just to unload all of this and get it off my chest. I'm stuck having to use only my phone though now, and I don't do that well at all. I really like and need the larger screen and full keyboard of the desktop.
I truly hope this day is starting off much, much better for the rest of you, and that everyone has a great day!
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@mara51506 One of the most difficult things for me is learning to accept help. I don't like other people in my space—even family. But this disease is teaching me how to accept it. Embrace that your SIL cares enough to help you even if you have to go back and change a few things or even find something misplaced. It is good for her to reach out beyond her own self to help you. That is the lesson I am learning.
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@irishlove I always imagine people talk to their plants that are cared for almost like kids and that they respond well and grow more.
I am presently making some diced potatoes and beefless ground, dry seasoned with garlic salt, taco and white cheddar. Later will put together some lentils and rice done up in air fryer. The beefless ground will be given either salad dressing to bind it all or one of the many remaining condiments I have. It should taste good.
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My scan results showed a little increase on one liver met and decrease on one bone met. I suspect they will keep me on Doxil. All your pocket duty was great and highly appreciated
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Hi all, I good, just posting less. I’m dealing with some food and fatigue related side effects but scans are good and this year will be my 10th cancerversary. I got hooked on several true crime podcasts recently and am enjoying the storytelling. I visited my BFF in Wisconsin last month for her 50th birthday and we’re going on a cruise together in October, so definitely looking forward to that. I do check in and read but not as often as I intend to. Glad to many of you are going well and I hope for good health and warmer days for everyone.
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The diced potatoes and super crispy beefless grounds were quite good and spicy. I am planning to have a basic egg dish, Got another disinfecting wash cycle, going, cats were messy. 3 cycles yet again, after final spin, machine wiped down by spraying disinfecting spray on cloth. I am pretty fastidious on no real germs to deal with. Apartment smells good to me now with the cleaning going on. I also got rid of the spray stuff in the bottle for my microfibre mop, replacing with vinegar and water. Vinegar smell disappears and it smells less like chemicals.
I did not get much done, couch still is not set up for me to use, napped a lot today in between times, I am OK with that, just part of recovery.
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@intolight She went beyond her own problems and I was while g and maintaining and I am finding where things were put. I am able to keep up with the cleaning better now, sweeping and doing a quick spray mop on the daily. I just thanked SIL via text and said I appreciated her help and DB help as he drove us around to appointments and everything. Now I want them to focus on the issues they have to deal with which are large, keep instead of doing more for me.meAlso need to phone cancer clinic next week find out about after services, will need to request the social worker for help I do feel should have someone come in and check on me.
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Woke up feeling pretty decent today. 6 hours sleep this time, I take it as a good win if I am being honest given the steroids I am on. Got some laundry going, found out need to consider that the lysol laundry stuff happens next. I have started the regular stuff instead then the lysol stuff goes next and then the vinegar and snuggle stuff. Later will be getting blanket stuff done up I think as well. I will see plus there are pants that need doing too.
I am set to receive some earbuds today as well, that is just fine.
I am having some beans, rice and eggs I think to start with and then perhaps will have hotdogs and and another egg. Last meal of the day will probably be yogurt. Will also get the cat corner done as well as the microfibre mop. I also have two boxes to break down and put away. I am also going to break down the quesadilla box
I do hope all have a good day, I am in pockets for all who need me today or any other day. I have appreciated the help with pocket duty while I was in hospital but I can also lend up support for everyone else as well.
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I must say am doing better at not purchasing any grocery, fridge, pantry and freezer are all full at this time. Will be a long while before I need groceries again.
Plan for first meal has changed, planning couple eggs, add in some peppers from freezer. Add those to magic bullet, beefless ground and some mayonnaise to make it creamy. May also add canned diced potatoes whipped up, take my muffin pan, spray down and put these in my breville at 350 for around 20 mins checking on them. If done right, they will be puffy egg bites with some beef and egg taste, sounds good to me if I say so myself.
Another idea percolating for me is to take bean juice from the can, save for 3 to 4 days in air tight container, potato juice from can would be decent too. Would give an extra place for a binder to come from. Can whip up juices with different seasonings and keep in fridge in one of the magic bullet containers. I think that would be a good thing to do.
EDIT, greased up my muffin pan, just a small spray of stuff. Took a can of potatoes, opened those up, two eggs and beefless ground. To give eggs a more whipped appearance, I did whip up in the magic bullet, got Breville oven set to 350 preheat and will heat up 15 min or up to 20. Fill each muffin less than halfway as they will puff up. I will post about finished result.
EDIT 2: I really enjoyed the meal, the mix filled up each of the muffins. I could probably have stood to have either flour or cornbread in the mix to make them thicker but they were still good with eggs, potato from a can and taco and garlic seasoning with the garlic parm mayo as part of the egg whipping, used the potato juice from the can instead of water as well. All ingredients, egg, potato cubes and beefless ground were detectable. After they finished in the breville, dumped in a big bowl. Added a small amount of sour cream and onion and white cheddar seasonings and salt. Bound up with a squirt or two of sour cream and lime stuff. It was the bomb, loved it and will do again. Muffin pan soaked about an hour to remove baked on stuff. It is clean. Then had the two good strawberry yogurt, just one, banana went rotten so in the food part of the garbage to avoid stinky stuff. Now will give myself a break til 3, scoop box, sweep then a cursory microfiber mop. Dumped the cleaner and just put in diluted vinegar, water and a few drops of dish soap. Take a few minutes to do.
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Well golly gosh darnit, was sweeping up some dry cat litter and dumping in a garbage bag that decided to give up the ghost, re distributing the litter on my pants and the floor, brushed it all back on the floor, moved cat food dishes, probably need to move stuff stored under couch run broom under there and then mop at the end. It certainly is not the end of the world, just a bit of a PIA.
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@mara51506 Ugh that is certainly a pia for sure! Hope you are all cleaned up,now and taking a rest. You're so selfless in looking out for DB and SIL. I'm sure they don't mind helping you but that's so sweet to let them know you got it from here. You are one strong cookie that we all admire. Seems your back to whipping up some creative meals , glad to hear you're enjoying it!
I'm relaxing with playoff football in the background. I feel like I'm fighting something off today, it's coming in waves. Hopefully I can ward it off. Made some chicken soup because I'm not feeling like a big meal, We had snow showers earlier today, thank goodness it only stuck on the grassy surfaces. DH took Buster to the groomers so I'm waiting for my handsome boy to come home. He will be exhausted from being stressed so it should be a quiet evening.
May everyone have a peaceful night!
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@cookie54 I try to get the last night but I swear I went to the washroom 4 to 5 times. That will be OK though. I am glad you are watching football.
Got to make my bed, do my laundry, sweep and finally finish laundry. Bed is done already,. just have to change litter, sweep floor and see if I can mop. The spray bottle would not fit in til end of day. My couch is almost done which is good. By noon, planning to get those done today
Unsure about food as of yet. Yesterday I had beefless ground, potato cubes in a can, put all in the magic bullett. Today will figure out what I can do instead.
I was going to have a Mcdonald's breakfast BUT it was not opened til til 11am. Instead, just microwaved two eggs, beefless ground. Will take out of oven, let cool off and put a binder on. Probably have yogurt with MIO after or yogurt with Jello and mio.
I do hope all have a good day and in pockets for all.
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Hi all. It has been a while since I posted. I read every day though. Mara- Following your struggles and how you are recovering. My thoughts are with you. Mae- Good to see you post. Mel- Always good to hear from you. Those that are starting new treatments and facing progression, I wish the best for you.
We are having a flu and Covid outbreak in my area right now. I have paused going to church for the time being. I have declined lunch dates with girlfriends lately. When I do go out, I mask up and wash my hands all the time. I don't want to get flu or Covid. With my lower counts being on cancer treatment, and, also, I just don't want to be sick. I was scrolling Facebook this morning and saw pics of a fundraising dinner held Saturday night for a non-profit in my area. A banquet hall with table after table full of people, and a speaker at the podium. I would never do something like that during flu season—- not now with cancer. When I was healthy, sure I would have went. But not now.
Just wondering how you all feel about something like this. Would you say, "what the heck" and go to events like this? Or do you take extra care, now that you are a cancer patient?
I did get my flu shot, but not the latest Covid vaccine.
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@candy-678 - Nice to see a post from you. I get it about the social avoidance, but I have to say I'm not that careful and sometimes I think I should be. I too got the flu shot, but not the Covid booster. I hear the flu is pretty bad this year, and that the shot isn't a particularly good match this time around, so many who got the shot are still getting sick. Ever since the big Covid scare passed, I've slacked off on masking, etc. I just plain forget. I've been to my medical clinic a couple of times recently and when I get there I see a sign that say "masks required", and I think, "Oh darn, I forgot!" and take and use one of theirs, when I normally would have worn my own. I think we all have to do what we are individually comfortable with, and I think your current reaction makes a lot of sense, given the current environment. Again, really nice to see you post.
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I posted a similar message on the Xeloda thread, but thought I'd ask here too, if anyone here who is taking or has taken Xeloda has experienced any muscle pain, tightness, mild cramping, and/ or mild fluid retention. It's only been two days and so far I haven't experienced any of the nausea or diarrhea problems, but I am noticing some muscle and fluid issues. I do get electrolyte problems a lot, so it could just be more of that, but I'm reading that Xeloda can cause some of these problems too. Too soon to tell how significant an issue they might be, so I'm going to give it some time, but would also like to know if any others with Xeloda experience, know anything about this. Thanks so much for any input.
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Nice to hear from you @candy-678 . I personally would not go at the best of times. I have not had a flu shot yet myself and there is the fact I am a homebody.
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Hi @candy-678 -so good to hear from you. While I have very low ANC (it was .5 on a recent test), I rarely get sick. I think low ANC on IV chemo is very dangerous but low ANC on targeted treatments is not based on my personal experience. I consider my mental health to be just as important if not more than my physical health. Part of the way I stay mentally healthy is by seeing people in person, particularly since I live alone. I would not dream of not going out to lunch with friends unless one of them was sick, then I would pass. On Friday and Saturday, I worked a large convention-8000 people. Some of my coworkers chose to mask, I did not. One coworker mentioned that her grandchildren had the flu on Friday-she was sitting right next to me at lunch, so that gave me pause but I don't expect to get anything. I am vigilant about handwashing and if someone is actively coughing, I move away but that is it. I think being around lots of people helps to keep my immune system strong by being exposed to various germs. I also am careful to get enough sleep and try to eat well. So far it works for me and I am much happier when I socialize in moderation. (I got the flu shot this year but haven't had Covid boosters in 5 years due to a bad reaction on my second booster).
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Hi Candy. Since I am on active chemo right now I give social interractions a miss, and am diligent with hand washing and masks at the hospital. I got the flu shot but as you said it is the wrong strain. I haven't had a Covid booster in a couple of years. My DD is an ER nurse at a children's hospital and she said the numbers of flu patients are very high. Unfortunately both she and my DGD are sick right now in spite of our best efforts so they will stay downstairs. They have a kitchen and plenty of room and light and access to outside so it is a good set-up for them. We run home air filters when one of them are sick and I think it helps. It is the most anyone can do. If I still get sick, I will deal with it.
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