My Husband, My Life, My Love, My Family, My Cancer
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Emac, I am so sorry about new brain mets. If you have WBR questions, let me know.
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Hi everyone. Hope you are having a pain free evening. I'm in your pocket for scans and life's needs.
It was 80 here today. I had two good days in a row, so we went out to one of our favorite seafood restaurants. They have a very good fish dip for appetizer. We enjoyed the fried shrimp and fried scallops. Our view, was the Atlantic Ocean looking out a huge bay window.
@emac877 I'm so sorry that you are dealing with those darn mets. But tiny sounds doable and I know Mara speaks of WBR to newcomers and the good results she had. Prayers for you to beat those buggers into oblivion.
@mara51506 I'm so glad you are taking control of what you can. As well meaning as family can be, well they overstep at times. As for that property manager, tell him you will file a complaint with the proper housing agency that handles harassment of people with disabilities.
@micmel Last trip to the hospital a nurse told me as patients we have the right to decline any treatment we do not feel is in our best interest. Gee sounds like you invoked that right and the new MO has a power trip problem. DH said it's probably because she gets a kick back from the pharmacutical company of "that" other brand named product. As long as you are versed in the pros and cons of each treatment and are stable, you shouldn't have to fight for your rights. 8 years of dealing with this and being stable, well I know I'd hold onto Ibrance, too. And scanning and her general disposition, yeah I'd be looking for someone else, if possible. I don't have a choice, due to insurance and the clinic only has the one MO at present time. She's booked a year ahead of time, so it's fill-ins until they finally hire 2nd MO.
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We're so sorry, @emac. We continue to keep you in our thoughts and prayers.
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Irish~ it was so upsetting , I never had that happen before. I miss my old mo so much!!!
emac~ ahhhhhhhhhhhhh! I’m letting out a yell for you. I’m thinking of you. One day at a time and the word tiny is what id hold on to!!!
love to all!
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emac - I’m so sorry you have more crap to deal with. My prayer is that the WBR takes care of the problem for you.
Happy weekend to all and GO LIONS!!!!!1 -
Hi all. I have no idea when I last posted here.
emac, I'm so sorry…
mara, I hope you're on the mend…
mel, I have no words. I'm sorry your new (soon to be "ex") MO is such a b!tch.
I managed to eat a bit yesterday and drank about 3/4 of a bottle of a higher calorie nutrition drink. Progress, I guess.
Waving hi to all,
Carol
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Hi everyone. Hope you had a nice day and pain free, too… It feels a bit like springtime, 70 and rain right now. It makes everything smell lovely outside. Nothing much happening in our household. DH is walking more, so that's good. Fighting Advent Palm Coast Memorial over Out of network charges for both DH and myself. It's costing us about $1000 more since that new hospital decided to bill us. We used the old Advent hospital until the new one opened in August. Next step to call Humana and if necessary, file complaint with Medicare.
In pockets for scans and really concerned for @emac877 , @mara51506 , @brutersmom , @sf-cakes, @micmel and others who need prayers/caring thoughts.
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Hi @irishlove I just posted on another page and you might have seen it. The first 10 days of my knee replacement were extremely painful. The meds wouldn't touch the pain I had. Friday night day 10 something went pop in my knee and the pain was gone. Probably some scare tissue. I slept most of the next 2 days. Day 14 I started walking without the cane or walker but I kept the walker near because I was nervous. Thursday the therapist made me go out side and walk up and back down no cane, no walker. It's 60 ft long and a steep incline. Then Friday she started me on a walking program. She wants me walking 30 minutes at a normal pace by Thursday. This is going to be a challenge with the new round of rains coming through. My knee is stiff and aches but nothing like the first 10 days.
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Brutersmom, I’m so happy to hear that you’re walking. That’s such great news !
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Well, stopping the cough syrup has eased the fatigue and stomach issues I had last week so that is good, busy week with Herceptin and meeting with new OT Wed and Thurs respectively. I will receive my little bedrail and will set that up and the bed ladder to allow me to pull myself to sitting before getting out of bed. Should be safer in my mind.
Starting to catch up with chores that have fallen behind which is good. Other than that, not much going on here as per usual.
I am still in everyone's pocket who needs me, hope all have a good day as well.
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Brutersmom - Just want to say how glad I am to hear that you are making some good progress at last! I don't know a lot about joint replacements but from what I read on the forum, it looks like they can be pretty nasty and are no walk in the park. Keep it up - I think the walking sounds great, and so much healing is exponential, so I imagine things will be faster and smoother from here on out.
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Emac, I am sending you love and support, and praying that the WBR will go smoothly for you. I know others have had it done and are now doing well, I want the same for you.
Sunshine, I hope you're able to eat a little bit more, after your radiation. Glad that's over for you and you can heal. A little progress each day...
Brutersmom, great that you are on the other side of your surgery and healing!
Mel, that MO... argh, what a doofus. Is there anyone else you can work with? I think it's important that we feel, at a minimum, listened to by our doctors, and ideally that we are working together in this, not just doing whatever we're told by someone who isn't hearing our concerns.
Will be headed to the hospital in the dark tomorrow morning, they want me there at 5:45am! Thank you so much for the good wishes, I've read a ton of articles and case studies about the type of surgery I'll be having (thoracic instrumentation and laminectomy) so that helps me to feel better. Looking forward to having this done and being back home in a day or two.
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sf-cakes, wishing you the very best outcome, minimal pain or nausea, and home to your own bed quickly!
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Hi ladies catching up on here today,Geez sorry to hear about all the crap going on here!
I felt like I have been consumed by trying to get Allie to a foster. Good news is she is on another farm in Rhode Island with other dogs. We drove up to CT yesterday to drop her to the administrator of the rescue and she drove Allie to her foster. We received a heart warming video when we got home yesterday of Allie running free and playing. I think we were meant to be her means to get her up form the south to her safe place. Warms our hearts and eases our disappointment knowing she is happy. @shanagirl you were right!
emac You have been through so much lately and I'm sorry to hear about the new tiny mets. Of course we are all cheering for you and that WBR wipes these suckers out!
Mara Glad you're feeling better, sounded like you had a rough week. Don't blame you for waiting for OT's opinion sounds like a good plan. Can't blame you for limiting your info to family I know they are concerned but don't need to be yelled at!
Mel I'm glad to hear you will have your mom close to your heart, love the necklace idea. Wow, speechless with this new MO sounds like she needs a little attitude adjustment. Can't imagine how she can be an MO and lack compassion. I'm glad you went "Philly" on her she needed it! We can only hope that you gave her something to think about and it changes her attitude. Hope you find the right fit.
sfcakes Thinking of you hope surgery went well.
brutersmom Glad your up and about and headed towards healing.
sunshine Glad you were able to get a little food down, hoping you will be able to increase a little at a time.
Irish Happy to hear you are having better days and warmer weather!
Relaxing catching up on chores this rainy Sunday and watching football. Eagles were a disappointment this season so now rooting for Lions and Ravens.. I think we can use a SB change this year.
Hope everyone is having a relaxing day.
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Waving hello to all. I hope that you are having a good day and decent weather. We have a favorite site to look at downtown Boone, NC and it's a sweet snowfall coming down now. Not heavy, just beautiful. It's 57 here tonight. I had to put out extra dry cat food for the 5 raccoons and at least one possum. The population is increasing. lol. They've been raiding Booty"s (the outside cat) bowl.
Tomorrow is mental health therapist. Hmm, don't have anything to really say. I think I said it all last week. Tuesday, finally appt. at cancer specialist office. I think it's with Nurse Prac. Hoping to get his or her read on PET scan that the radiologist read stating mets to my orbital bony structure area. Hadn't known about them before, or wonder if they are new…
Just wanted to say @sunshine here's to an increased hearty appetite. @brutersmom So happy that you have made such good progress. @sfcakes, hope your surgery is quick, painless as possible and you get home to your own bed asap. In pockets for all your needs.
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Hello ladies ~ today DH tested positive for Covid and he’s feeling badly! I’m so afraid to get it. It’s always something. Today we got my mother’s ashes into the urns. I have one large one beautiful baby blue( mine), 4 smaller urns 3 necklaces. Filled them all. She’s in her urn and it’s really comforting having her in my living room daily. My necklace is also filled. My sister and my mother were estranged for years, she was asking about mom’s ashes. I said they arrived and asked her if she would want some. She said Yes !!!! I’m beyond thrilled. I bought her an urn to match mine and she’s getting the same necklace. It’s so special to me. I think my mom would be thrilled I have to hold onto the little things. My step father isn’t doing too well with her death. I think he’s still in shock, he calls a lot. I think I bring him comfort. I got him an urn my two kids and my brother and now sister. My step father is getting a necklace also and so is my brother. My sisters hasn’t arrived yet but we will fill it when it does. I’m finding great comfort in these ashes. Thank goodness
im still thinking about the mo deal. Had to laugh at go all Philly on her. Too funny. I am also hoping for lions. Ravens lost. I am sick of the chiefs. The lions were kicking butt but San Fran tied it up at the third qtr. so we’ve got a hell of a game there. Rest well ladies. Hugs to all.
Edited to say lions lost. Darn darn I’m sick of San Francisco tooo ! Ahhhhhhhhh!!!
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Mel Ugh stupid Covid….sick of that and the chiefs (sometimes lol) too. Can't help but root for Andy's team now since he was our coach for years. What a game, sorry @goldensrbest but the Lions put up an awesome fight! Happy to hear you are finding comfort from your mom's ashes and you are doing a great job including everyone. I know she is smiling ,pain free and happy to be close to all. Fingers crossed DH has a mild case and you can escape it.
Irish In your pocket this week for all your appointments. You have a warm heart taking care of all the animals , I love it.
Just errands for me today and catching up in the house. Already hoping for spring lol, 50 calendar days away! Hi to all here and prayers and pocket duty for all who need me.
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Mel, lovely tribute to mom by sharing her with several family members, she will be remembered. Sending love your way.
I am feeling better. I still cough but not taking anything anymore. Cough syrup caused some lightheadedness etc. Still slow on the chores but not worried about it, appetite is better as well. I received my bed rail which will just slide under the mattress topper and figure out how to strap it in. It will prevent falling out of bed and provide something to hold onto getting out. The bed ladder will allow me to sit up if I wish. I chose these for myself and new OT will see them Thurs. Nervous about telling DB and SIL as she gets angry easily but I did these for me so I can maintain storage under bed. I will tell them if they talk about coming over. Otherwise, not mentioning anything.
Other than the neverending laundry, not doing much. Garbage day today as well. I did some bed marching while lying down and some fantastic bridge poses, held a few of them and got myself high off the bed. They help a lot for the push strength. I do attribute falls to the oncoming flu and unknown fever last week. I am looking forward to moving on from last week.
In everyone's pocket and hope you all have a good day.
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Good morning all! I’ve been MIA a few days and haven’t read yet. Just checking in. I’ve been down with a bad bladder infection, and too many SE issues and all these dark days. Will post when I’m more up to reading. Love you all.🩵
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Sorry Shanagirl. Hope that you are feeling better soon.
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Shana - I totally get it; especially about the side effect issues and dark days! So sorry to hear about the UTI. Feel better really soon!
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Well, put in the bed rail, not full length, installed, used the security strap to attach it to foot end of bed, should not move around too much and be safer. Getting in bed will be strange but I do not forsee a major problem. I will see how it works out but will give me a way to hold on when getting out of bed. Bed ladder will be next and I cannot see issues with falling out of bed or when exiting hte bed.
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Good to hear Mara~~~ stay safe
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SFCakes - I hope you are resting and recovering and that surgery went well. Crossing my fingers that you will be able to be home in your own bed soon.
Cookie54 - I'm so happy for you and for Allie that she found her right spot.
Mel - I'm also happy to hear that your mom's ashes bring you so much comfort. Here's crossing my fingers that Covid avoids you.
Mara - I am in hopes that the bedrail and the ladder work well for you and make you feel safer.
Shanagirl - Feel better soon, brighter days will come. 🌞
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Waving hello to all. I hope that today has been a kind day to you and yours.
I have a swollen lymph node, pain in jaw, sore throat and the worst ear ache. No fever, no cold, surprised by this. Gargled peroxide and used ear drops. Seems I get a lot of infections since starting Ibrance. I'm not convinced the colitis is completely cleared either. @shanagirl, hope your UTI clears quickly. I'm doing a bit better with those by taking cranberry-manoose daily. Pharmacist recommended it. I only have 5 more days on this Ibrance cycle, so I'm hoping to hold off on antibiotics. Seems every month it's interrupted. @sfcakes, hope your surgery went well and you are on the road to recovery. @micmel, what a beautiful tribute you have created for your whole family. I'm sure your sister regrets that she didn't have a closer relationship with your Mama. This gesture will certainly bring some comfort to all. @sunshine, have you had any lucky with bone broth? My daughter introduced me to it and it went down easy and stayed down. It's nutrious, too. Hi Mara, Emac, Eleanora and all that I may have missed.
Cold here tonight, heading down to 40. They opened up warming centers as we have a rather large number of homeless folks in our county and the neighboring county. Please stay warm and can't wait for springtime and daffodils poking their heads up.
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It’s late and I’ve been up reading here and keeping with everyone’s recent struggles. I spent the day just resting and doing nothing other than watching TV, and feeling down and sad that I invested literally no ambition to get things done. My GPcalled this morning to tell me the the culture for my UTI was positive for infection and she put me on a prescription. It’s feeling better already because I’ve been drinking 2 38 oz bottles of water during the day.
@threetree Yes I do believe the Side Effects from the Fasoldex and also the Xgeva are what causes the tiredness, weakness bone pain and mood being low. I feel that each month I get those injections they are cumulative, and I become more affected by them and the SE’s last 2 weeks. I’m also wondering if these cold dark stormy days add to the depression. I hate that I’m not active like I’ve been all my life.
@eleanora like you I did everything right, ran every day. Working out, weight lifting arms, riding my horses and long jogs on the beach. I keep planning in my mind I will be more active with fast walks as the weather gets nicer. Ate salads, salmon, juiced vegetables and carrots nursed all my kids kept up with yearly mammograms, stayed at healthy weight all those years, didn’t smoke. Then you get one of those nutritionists food shame your eating choices now with Stage IV Cancer.🙄
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Shanagirl - Terrible as these side effects situations are, it is so reassuring to hear that your take on the faslodex and bone drugs (I get Zometa) are so similar to mine. Helps me think I'm not off base and "out there" when I express these ideas to others. And yes, I too think these effects are cumulative and wonder just how much a body can take. I said something about this to the palliative care nurse practitioner the other day and the main message I got from her was pretty much,"Yes, you will have side effects from all these drugs and you can put up with and deal with them or not take them and die sooner." She wasn't that blunt and was pleasant and framed it all nicely, but that was still pretty much the message, i.e. suck it up! She noted that lower doses and or other drugs run the risk of not being as effective and/or allowing the cancer cells to mutate and develop resistance much in the same way antibiotics do. I guess I'll just soldier on and see what the onc says when I see him in early February. I continue to hope you feel better soon, and am sending you nothing but good thoughts and wishes.
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Irishlove, I’m so sorry about your ear pain. I totally get it. Mine was so bad last week that I couldn’t eat or drink and ended up in Urgent Care to get it checked. I was already super dehydrated and nauseated and they wouldn’t see me at the Health Express (but were really nice about it). I ended up getting IV hydration and a script for antibiotics (liquid form) which seems to be helping.
I think you all will get a chuckle out of this. I’ve lost so much (for me) weight between the esophageal mets, radiation to that area, nausea, and so on. I was down to 109 pounds from 131 when this all started. I’ve spent a lot of time on the loveseat just resting or sleeping. I was joking about being a couch potato and DH said, “More like a couch French fry. There’s not enough of you to be a whole potato.” Anyway, we both thought that was SO funny. We crack ourselves up sometimes.
I’m better able to eat and drink now and my weight was up to 111 today. Irishlove, I did buy some bone broth but haven’t tried it. Greek yogurt is good and goes down well. I also got some Progresso canned minestrone soup which is soft, and I can puree it if I need to. I had a phone consult with a dietitian last week and she gave me some good tips.
Mel, thinking of you. I’m glad you and your siblings are sharing your mom’s ashes. I’ve not heard of a necklace. I will look that up.
DH went skiing for a few days. Last week when I was so sick was really hard on him. I really think that our “suffering” can be so hard on our loved ones who can’t help us or fix us.
I’m sending warm hugs and love to all in the living room.
Carol
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I was offered a nutritionist but declined because overall my diet is pretty good when not sick so I declined.
Feeling better each day which is good. Have nagging cough but that is feeling better too.
I think I may have wasted money, I cannot assemble the bed rail and really did not like it. Called brother and said we can look at getting something done, decided to make peace because still need help and I don't like not getting along so that felt better.
There is some sort of construction outside the door so stuck inside for now. Planning an egg mcmuffin with two eggs, some lentils and cheese with bacon bits mixed in served with english muffin. Seems like it could be good, use my egg cooker to steam up egg, cheese and lentils and toast english muffin separate.
In everyone's pocket for today and my only real goal is to have my laundry completely done by end of day. Still working to get through it all.
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