My Husband, My Life, My Love, My Family, My Cancer
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Shana - Nice to hear from you, even with your lost post. I hear you about how frustrating that is - especially with a long post you've spent time on! I've done it too. Lately, I haven't had too bad of luck if I make sure I use the "save draft" function first, before posting. Someone here suggested that I do that when I complained of losing a long post, and so far it's been working. I wonder if you do "save draft" even after copying and pasting, if it wouldn't give a lit bit more of a guarantee that it will actually post when you finally hit the "post comment" button.
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Shana ~ that is beyond annoying. Grrrrrr
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Shanagirl, when I am typing something, especially if long, I type it on a sticky note, they have them on PC or android phones, can dl on google play either way, type your post and copy and paste. Makes responding to a lot of people easier and if you do it there, it will not be erased. Yes, grrr was how I felt before realizing this.
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Good morning all. I did not take a nap today and yet here I am, hooting with the owls or with the chuck's willow in the wee hours of the morning. Two more days of antibiotic and then?? I don't know if I should restart Ibrance. I don't have an appt. with the surgeon yet. Tried calling Friday afternoon and they leave early that day. Guess I'll call first thing Monday and hope for an appt. this week. My stomach is still not right.
Thinking of sondra and emac and all of you wonderful family. In your pockets for all your needs. Thank you all for your caring support. My house is clean (me), meals are basic but appreciated (DH), laundry done by (DD). But you know I wish someone would just take a little spare time and come sit and visit with me. Bit lonely and there are 5 people in this home.
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Shanagirl Ugh how incredibly annoying …sometimes modern technology is soooo frustrating! I am not the quickest typer so I have definitely been there . However it's nice to see ya, hope your feeling well.
Mara In your pocket for your busy week ahead sending positive vibes your way.
Irish I hope they are able to get you in for consult soon, fingers crossed. Perhaps if they give you a date that is too distant your doctor's office can give a call. In your pocket this week for all your needs. I understand how it can be lonely even living with others. Sometimes we all just need to slow down from life and take time for each other. We are always here for you, wrapping you in a virtual hug❤️
Not sure what the plan is today , we are back to chilly in NJ. Not gonna complain because it's sunny and no rain. Buster will get his walk and I hope to go out alone and get my mental health walk in today too. Had a nice family dinner yesterday to celebrate my DH bday this coming week. No appointments this week glad because I had a busy week last week.
Waving hi and wishing all a good day.
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Irish, hope you get in soon for more information on solving the stomach issues once and for all.
Cookie, sounds like a nice day of walking for you with buster and your own walk.
I finally slept 8 hours, most often I sleep around 6 hours due to staying up late. Yesterday it was 1am when I put my phone down, I enjoy the videos on facebook, especially the dad jokes and whose line is it anyway. Then I set up for a sleep and usually fall asleep pretty fast.T
I did discover a new food texture that was quite enjoyable for me, I cooked a piece of battered fish first and then took a bunch of canned lentils and microwaved them for the 2 mins 30 seconds. They came out almost crispy and it was enjoyable having this texture, probably will do that going forward. Today still watching ads on TV for little bit of money, got my regular phone watching ads for little bit of money and that is about it. Still like it when I can add to buying a few grocery or cat supplies at Amazon.
Breakfast will probably clean my system out but be very nutritious, got 1\3 cup qunioa on the stove, 2 tbsp of chia seeds that were put in the spice grinder, going to add lentils and shred cheese, heat those in the microwave. Shred cheese turns more dense, not quite crunchy but almost, same for the lentils. Once all comes out, salting and putting some ceasar dressing to mix through as well. If it turns out good, I will edit. I do not see why it would not be but there is strong nutrition in there.
I am in everyone's pockets and hoping everyone has a good day.
Edited to add, I made everything in the amounts above, 1/3 cup quinoa, 2 tbsp of the chia seeds chopped in spice grinder and about 1/2 cup lentils with small handful of cheese. Microwaved for 3 mins, made cheese super crispy which was different but good, chia seeds and lentils were a bit crunchy too. Added the quinoa from the pot, salted and added some ceasar dressing as well. It did taste good and super filling. Only two problems, I should have added cooking spray to the pot cooking the lentils and to the plate I microwaved, I had to do a lot of scraping but got most of it, will try this kind of thing again but with the cooking spray on the plate and in pot being used. Nice to have another way to make up ingredients.
I am going to make a pizza vibe at supper by adding more garlic to the naan bread with garlic spread. Put on some crunchy lentils, possibly some chia seeds, beefless ground, small handful and shredded cheese on top, not until later though, just roll it up tight and again, eat like a burrito. May also season the beefless ground in some taco seasoning and bit of water for flavor or just spread some queso and skip the garlic spread, I will figure it out later. Dessert is looking like a high fiber brownie torn apart and some coolwhip blended in. As you can tell, most of what is happening today is food related and I am OK with that. I will also eat earlier so if full, can have dessert an hour or so later without eating in late evening.
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I gather most are busy today which is good. I have not accomplished much myself. I am still trying to put an operating system on the slow computer but none are working out, there are many different ones that I can try so that is not a bother at all for me to keep trying them.
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@mara51506, you have so many talents. I am in awe of your tech skills - I am a total fool when it comes to technology.
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busy weekend I see! Hope all is well sleep well my friends. Here is my Theo hanging out waiting for his dinner ! I love this doggie
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Well I have overnight company in the form of a cat, Booty. It started to storm and she hurried into my bedroom without realizing the Minnie and Pigeon were on the bed. She hurried under the bed when it became appearent. So I shooed them out and now Booty is sleeping with me. I layed a light weight blanket down and did some major trimming and combing. She is so matted from being a wild haired persian. No one else can even touch her. Takes about two hours, so I split up the chore as she lets you know when she is over it.
Waving hello to all you wonderful folks. Hope it was a good weekend. Almost 90 again today, but cool down is coming. Suppose to be severe storms end of the week, not that I'm going anywhere, but others may be traveling and it will affect many areas of the US. Stay safe and I will be in your pockets.
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Hello all.
I "attended", virtually, the LBBC (Living Beyond Breast Cancer) conference this weekend. It was in-person in Philly. I cannot afford to travel (I am in Illinois). They had some good speakers. I jotted down some notes to ask my MO in the future.
The camera showed the audience. It would have been a good time. To talk with others with MBC and share our experiences. And to get support. I am so alone in this. My sister and brother rarely ask about my experience. I go to appointments alone. I have lost "friends" over time. I don't have anyone in-person to unload some of the burden.
I was glad to see the conference, but I felt like they were preaching to the choir, so to speak. I wish some of my circle could have watched with me and heard some of the comments. Not just the medical stuff, but the panels with other MBCers when they talk about their stories and their struggles. Then my circle could see that I am not being a hypochondriac or being dramatic about my situation. That this is the reality of MBC.
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Candy, I probably should have virtually attended the conference myself. I relate to what you are saying about not being a hypochondriac as well. I am angry for you with the people thinking you are being dramatic about cancer. In your pocket for that sending vibes to have them stop doing that. I am fortunate as DB and SIL take everything seriously for me, we don't need to talk about it all the time which is good. They are most concerned about me falling though I have always fallen from younger years, I could just pick myself, not now unfortunately. Cane has been wonderful as well as the Paratransit to and from hospital.
I found some sour cream and onion seasoning, supposed to be for popcorn but of course you could use it in anything, that will be delivered from Amazon today. Edited to add, opened up the sour cream and onion seasoning, so delicious I cannot believe it, looking forward to getting more.
Edited Breakfast lentils, was an egg with some beefless ground, skipped cheese since making some sort of hotdog and cheese on the naan for dinner. Since I am microwaving, will spray the plate this time and allow me to clean up right away. I did put queso mixed with little mayo and salt after microwaving was done, mixed it all together and. Supper is likely going to be a piece of naan, hotdog and put ketchup and mayo with some parmesan cheese, may even use some cheese on the naan itself while it bakes in the oven. Should be really good. If not too full from supper, might take a fiber one brownie, add one of the reese peanut butter cookie, no need to bake it and little bit of coolwhip, just need to pull apart brownie and the peanut butter cookie. Depends how full I am or just eat earlier so can have dessert later.
Other than meals, laundry always in order for me and probably play with my two laptops that are not working, still using new one but very interested in trying out different things on the laptops as well, turn them into chromebooks maybe, love technology anyway.
Hoping everyone has a good day and in pockets for all others.
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Had my next MO appt today. It went better than last time and I think we put things to bed about the bad first impressions that we had. She seems to be a “know” it all. I apologized for my part in the awkward appointment last time. She started the appointment off with. Your scan was great. You’re totally stable and it looks good. I was glad to hear that. A social worker was in the appointment this time and she was very nice. We talked about my mom and her passing. And I am staying on ibrance since it’s working so well after 8 years, if it ain’t broke. Don’t fix it.
candy~ I am so with you on people thinking I should be doing things. People invite me to the beach and I would love to go , I can’t be in the sun, I won’t go in The ocean. Because of my neuropathy in my feet. I may as well drown myself!! I have to be comfortable and have my bed when I need it. I go to bed early. And if I don’t. I pay for it for two days. After.. I have to stay home, If I couldn’t go see my dying mother because of my condition I sure can’t hang at the beach. People who don’t know DONT KNOW!!!!!! I’m sorry you’re forced to do things alone. It’s another reason why, I wish we here, could all be together for real…. I’d love to spend time with you all in my living room. Sending love to alll. Hello Mara and Irish!2 -
@candy-678 I would have loved to attend the conference "virtually" as well, but didn't. It sounds like it was worth it. I resonate with you feeling lonely even with others around and I live with a family of four. My DH takes me to my appointments, in fact, he doesn't let me drive anymore even though I can, although he sits outside in the car. And my DD takes me shopping once in a while, but I still feel lonely. Mostly because I am hesitant to "share" how I am feeling for the same reasons you shared. I feel like I do so little now and I don't want to put any more on them. That is on me. I still cook dinner almost every night as neither my DD nor DH cook, but sometimes I barely make it. Sometime I just want one of them to tell me to sit back and let them cook and take care of me, but it never happens. I think I miss work and the socializing with others being a little part of their world. When all I have is my world, it closes in on me.
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Mel- I am glad your MO appointment went well. I am glad you both seem to be on a good path with your patient/doctor relationship now. And I agree, if not broke don't fix it. If they think staying on Ibrance long term is ok, then that is what I would do.
Intolight- I don't really need a driver, like you said your DH drives you. I am looking for someone to BE with me. Be interested in what the doctor is saying. Hold my hand. Squeeze my shoulder. Or, at the very least, call me on the phone after the appointment to ask how it went. My appointments go by with no one seeming to care.
Some panelists in the conference talk about pampering themselves at scan time— going to the spa, going out to eat after, etc. I don't do anything. I just go to my appointment and back home. Yeah, maybe I may get a burger from a take-out place on the way home, but it is not like going out with friends. Some panelists talked about their spouse or families helping with household chores, trying to lighten the load knowing they are struggling with side effects, etc, etc. They made it sound like they have family/friends at their beck and call. I do everything by myself. And, I have actually gotten grief over not attending functions like people think I should. That I am "milking" my illness. No empathy seen here.
I just wish I had some kind of support system. This conference was a weekend of validation that MBC is a serious illness and is hard. My circle of people seems to think it is no big deal, and that I am making it a big deal when I talk about it. I wish my circle could have seen the conference to show them that it is bigger than just me. That lots of other women are going thru this too.
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Hi all. Mel, I like that you can continue Ibrance after all these years, that it's still working. I get what you say about going here or there, when all you can manage is a day at home. Don't apologize for self-preservation.
Well I took my last antibiotic for diverticulitis. It's been 10 days on, 12 days off and now 7 days on. Have no idea when to restart Ibrance . Guessing tomorrow night. I do have an appt. Monday April 26 with surgeon to discuss this. I also have video call with MO earlier that day, so I can get some feedback from him. Major abdominal surgery obviously isn't very appealing. However, I don't want to find myself very ill and have to have emergency surgery and wind up with a iliostomy, as my daughter did. She has to live with that bag everyday, and it's been 10 years. Plus I can only eat a very strict diet right now. What I'd give for a juicy hamburger or plate of spaghetti.
DSIL painted our front and back door. I love the vibrant Floridian color of a peach. It's not red or orange. Neighbor just painted creamsickle orange on all the trim and door and tile barrel roof. Gotta close my eyes when we drive by.
In pockets for all your needs and a big hug going out to you all, my favorite people.
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Irish, big decisions coming your way, in your pocket lending support as you make them.
Oh Candy, wish I could have been around for that thoughtless person saying you are milking your illness. The tongue lashing would swift and sharp educating what we typically go through. What a thoughtless thing to say. What I would say is keep to circles who don't minimize what you are dealing with and support you, virtual groups can help and see if there are places who have groups that understand what it is like so many supportive groups besides this one and online can be just as good, video calls etc. I hope that next time someone says something to belittle your cancer, tell them about the grossest SE you have had to deal with beyond the anxiety of treatment, see if they would enjoy those stories and if they could deal with that all the time.
Mel, I am lucky that the constant people in my life, DB and SIL know I am a hermit, always have been to a lesser extent when younger. I don't mind being alone or going out when I feel like. You do what you can handle. In summer, I will have to bust out my UV umbrella if for some reason I have to take a regular bus, no outdoor walking, cannot handle the heat.
Today, planning some walking, some bed exercise, already did some with lifting myself to sitting. Two arms is easy to lift bodyweight so challenged myself to one arm lifting, and even did reps where I did not lay down all the way but maybe halfway and used one arm to lift and did about 20 of those. Still have Paul Eugene, I like the marching in bed and it is 10 mins. Older DB threw down the gauntlet, not direct to me but he got 21000 steps between walking at his job, the dog and shopping yesterday. I will train myself to achieve the same thing, in shorter bursts and including the marching on the spot at home and show him later. Already left a message that he did awesome and challenge accepted. Even if using a cane, steps are steps and can do several short walks to build up, not planning to walk non stop.
Edit, got some of the southwest canned beans, corns and other veggies, forgot spinach, will bring it out later. Added shredded cheese, wheat bran for some extra fibre and beefless ground, going to liberally season with the sour cream and onion seasoning and enjoy. Found some pasta and puffs made out of quinoa flour, may give those a shot from Amazon, will wait til they are free with my rewards on websites. Edit postmeal, all the tastes went well together, went crazy with the sour cream and onion seasoning. Microwaved 3 mins. It was a bit sloppy due to forgetting about draining the canned salad, will adjust that later like try to dehydrate a bit before making up. Overall it was a good meal and probably healthy. Very filling and save some money to try out some of the GoGo pasta and puffs, have to wait til Thursday to order but will have enough earned money from rewards site to try out. They even have pasta made out of lentil and quinoa flour.
I hope everyone has a good day and in pockets of those who need me.
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Good morning, all. Not much going on here. I'm in the desert for a week with my sister. Am having my drugs shipped here today. I hope they arrive uneventfully. It's nice and quiet here for the time being. Coachella festivals were the past two weekends, and Stagecoach is next weekend. It can get pretty nuts during the festivals.
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I survived the second MRI attempt with the pain inhaler, thr top like radiographer and his assistant in the room, and a lot of groaning and shouting. It was immensely uncomfortable but I got it done. Images have already been read and a bunch oncologists and orthopedists are fighting over them - one is even having his own radiographer do his own read. So I can only imagine what is going to happen tomorrow.
Still stuck in the hospital and so tired, no date yet to go home. Over the tap tap tap someone else wants something else from.me. hopefully now with thr scan for done we can get a plan and timeliness. My awol oncologist made an appearance yesterday to stop by at least.
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SondraF - I am so sorry to hear you are still in the hospital and things are such a mess with your care team. I have been thinking of you and hope that a plan is decided upon soon. I can relate to the "too many cooks in the kitchen" in terms of the care team and everyone seeming to want something from you while needs go unmet.
I feel very fortunate on my end with the support I have had with my illness. I am the medical one but my family has learned a lot from this process. I do empathize with the being alone a lot. Sometimes I need that sometimes I wish I had someone here. I would love to go out to eat when I can afford it but I'm not appropriate in public to do that with my vomiting issues right now. I think my bigger concern is that I have aging parents that I am trying to help my brother take care of and they are all trying to take care of me so it ends up being a team effort of who's feeling the best that particular day. My dad has cognitive/dementia issues and my mom has physical struggles and falls a lot so it gets to be a lot. I do have friends that check in on me and help me out but they are working adults so I try not to bother them too much because they have their own families and work and all of that going on too so I rely a lot on my brother and try to do as much as I can.
I used to be able to drive myself but while I thought I was handling the WBR pretty well, this week it is making me dizzy and off kilter and I can feel my thinking not being quite right. I am dropping words and forgetting things and really struggling to make sense of anything I have to read. It's hard for me to write this and make it make sense. My brother takes me to all of my appointments right now because I can't remember anything for longer than a few minutes and can't always think forward enough to come up with questions, or I don't remember what I was going to ask. So that's been frustrating. I am off oxygen completely now for the last few days and that has been wonderful. It's been like being off leash. I still can't do much in terms of exertion for very long though so I'm working on that. I was able to clean my shower and do a grocery pick up last week by myself and that was nice. I hope to be able to go to the grocery store when the radiation effects become less severe. I have had severe back pain but nothing on the x-rays so I have been on a tapering dose of Dexamethasone for the last 7 days and that has not helped.
Thinking of all you. Sending virtual hugs and hoping you have good weather to enjoy. Sorry for the long post.
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Good morning all. I had to take notes to keep up with everyone! That is a good thing…
@sunshine99 Carol, I love that you get to spend a week with your sister resting in the desert. Enjoy your special time.
@sondraf Oh my, a fighting medical team! Sounds like they need a mediator and to come together at a table and talk about your best interests. That must tear you up inside!
@emac877 Hearing you can't eat out sounds tough. I am sorry to hear of your mental lapses all on top of trying to handle aging parents. You are deep in my prayers for peace and rest.
@irishlove Sending support as you make decisions about your surgery needs. I understand your fear. My stomach hurts everyday until I have finished with my daily diarrhea, and I am so reluctant to do anything about it. I figure it is just part of the many SEs. I love the thought of your peach door! How fun!
@candy-678 I look forward to eating out after all my appointments since I am already up and dressed. It is like a mini date with my DH. We have a favorite breakfast/lunch mom and pop restaurant near us we like to visit. I venture in with my mini O2 machine and ignore the stares. I can get breakfast anytime so it is easy on my stomach. They do have delicious hamburgers if I feel particularly good that day!
We lived with my BIL & SIL for two months when we first moved to Colorado, so they understand my struggles. I cherish them, but it took living with them to get here. Unless people walk in our shoes, they won't understand.
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Emac and Sondra-You both are in my prayers for better days and effective treatments. Thank God you have your brother Emac, to rely on.
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Emac, the dizziness, memory issues, loss of short term memory or forgetting what you wanted to say or remember is normal and will improve. Keep an eye on the dizziness post WBR wrap up as that should wrap up once treatment is over. Remember that youtube has many workouts in bed, just as effective and safe too should you want to keep up some strength safely. Right now, you do require more help and I am glad you can get it. If the dizziness or other symptoms keep up, definitely mention it to family or write on a postit note so you can remind yourself. I t did take me months to follow a book or TV show, I can relate. In your pocket as well.
Sondra, hoping you get out of hospital soon as well, hopefully the infighting of docs will lead to better information for you, in pockets as usual.
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thinking of Sondra. And Emac. Sending good thoughts and big hugs of support….
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Waving to all you sweethearts here at Mel's. Especially in your pockets sodraf and emac. And all that could use extra support.
Finished antibiotic yesterday and start Ibrance today. It bothers me or worries me, about not taking Ibrance for extended periods. 10 days off just 3 weeks ago and now another 7. But today was first day my abdomen wasn't in bad pain in a month. I can handle diahrrhea, but it's the horrible pain from the intestines being inflammed and an abcess in the colon. We are going to speak with pallative care nurse for her input on surgery, and the MO via Zoom Monday. I have the surgeon appt. right afterwards around 4 pm.
Tomorrow DH goes once again to his MO to see if it's time to begin treatment. I suspect it is, he's tired and sleeps a lot. They will have to redo the biopsy to nail down the exact type of non-hodgkins-lymphoma. Last biopsy was inconclusive. He's heading out on his own, it's a long drive and I'm not up to it. I trust he will be honest with MO and with me. Maybe I need to write a note to the Doc asking him to let me know what he thinks is best. lol. Sounds like school. We have a mixed message on his cancer. He doesn't want to out live me and I don't want to out live him. Maybe that bus will find us at the same time. I think if he starts chemo, MO said 8 years before he may need a bone marrow transplant. I don't want to know my prognosis and frankly with MS and severe abdominal problems, don't think it would be to accurate.
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glad your abdomen is feeling a little better Irish….thinking of you.
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irish In your pockets for you and DH appointments and always in my daily prayers. Happy to hear you are feeling better I sure hope it continues that way.
sondraf Hoping that your team comes to a joint conclusion and can help improve your quality of life. Continued prayers that this is resolved and you can be on your way home.
emac Hope each day your cognitive effects lessen and you are able to get back to doing some everyday tasks without issue.
sunshine Hope your enjoying your desert getaway and share some relaxing time with your sister.
Candy Sorry you have to feel like you need to validate your cancer, so ridiculous! Nobody really gets it unless they witnessed the daily struggles. Keep rising above those people, they're just not worth it.
Mel Glad to hear you and your MO have put your initial meeting behind you and have moved on.It's hard enough switching doctors!
Hi to all here wishing all a good day and a better day today for all struggling.
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sondra - thank God you were able to get an MRI. Can’t imagine having to watch your medical team bounce things around right under your nose😳. I pray that there will be a consensus on treatment so you can get home.
emac - I hope all your SEs will end when you complete WBR. It’s a tuff road balancing your needs and those of your aging parents. Gotta remember that to help them you need to help yourself first. Don’t overdo. I admire your cleaning your shower but those things can always wait. So glad our dear Mara can share her experience.
Irish - lots of hard decisions. Hope you get some helpful answers. Your hubs too! At least your pain has taken a vacation.
It was 70 yesterday and only 44 today. Crazy weather. Had to turn up heat this morning. 30 outside🙄. Spring is trying hard with lots of leaves popping out and 🪻🌷🌼.
Sending hugs and good wishes to all our residents here❤️
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Thank you all for being in pockets, prayers and for the support. I am feeling like I have improved from where I was at even a month ago so I am encouraged. I met with the RO yesterday briefly and he said my treatment is going well and reassured me that it will improve. My back pain is improving also and we have had beautiful weather the last few days so that helps also. The rain and clouds are due back at the end of the week but such is Spring in the PNW.
Prayers and well wishes for @irishlove and your DH as you both navigate through this, @sondraf as your team hopefully puts a plan together. Thank you all again for the support.
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hey ladies cross posting this here to pick anyone's brain here too…
Hey all, Was wondering if anyone has any tips regarding Xeloda and pricing with Medicare. I am currently on Cobra and SSDi due to Stage IV status which makes me eligible for Medicare on 7/1. I will be talking with my local SHIP office to help with Medicare but figured I would ask for any inside info. Open to any advice when picking drug plans etc.Thanks.
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