My Husband, My Life, My Love, My Family, My Cancer
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Good morning all. Mara, hope you are back up to speed. You are always so busy that I can't imagine keeping up with you. Guess I run on half-speed. Maybe some good lentil based soup would help.
This is to all struggling with Pfizer and why I am determined to see it thru. I have to pay $600 for Xgeva shots every 3 months, $60 for fulvestrant shots every months. Now add on $160 a month more and we simply can't do it. I'm convinced DH told his MO no more tests because he's afraid of the cost of treatment for non-hodgkins lymphoma. His numbers are not super high, but he bruises so easily and sleeps on and off day and night. I'm angry because that corporation is worth billions of dollars and they decide to screw everything up and not even give you an answer and here it is 2/2. I filled the MO in and he is livid. He said what I feel: "you shouldn't have to be worrying about this". Here's to his office giving it a go. Now as I may or may not have mentioned, RX to Go is part of Florida Cancer Specialists and they are the go to or thru to get Ibrance. I laughed when MO said well if you were diagnosed today it would be Kisquali. I laughed because last MO did prescribe Kisquali and Humana HMO senior plan said "NO". I did not feel like fighting them. It's a no win situation and it's taking a toll on many cancer patients.
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Thanks everyone again for all your thoughts and prayers, Ive been having a run of really good days finally and feel more myself. Wounds are going in the right direction, nurses have all commented on how much better I look compared to early last week, and I just feel finally a bit of happy. No more wailing or crying benders either, although something will make me sad at least once per day and I may have a small private cry, but nothing like two weeks ago when they were handing me lorazepam almost every day. We will see how the transition to home is this week, but having mom here has been really a huge help.
@intolight I feel like almost everything you do in life now is passed on to the customer to sort out or deal with, which puts so much extra stress on you; Im convinced all this buck passing and bureaucracy is a big part of all the stress and anger in the world right now, people are getting fed up with not getting the service they paid for and have to fight to get and that on top of the increasing prices! You and your MO have every right to be angry - even here I feel like I have to just go along with some box ticking bs so I can get out of here and then work to get what I DO want, which has caused so much anxiety and stress. Good luck and may both of us eventually win!
Thank you @mara51506 for such an emphatic declaration of your pocket duty for me; its so nice to know there is this lovely community reading and supporting. This has been an enormously difficult time that sometimes felt like there was no end coming and everyones thoughts were so appreciated to know others were cheering me on via pockets :) I really hope you get better soon, you do so much during the day in your little apartment it just amazes me and I get a kick out of your posts! But sometimes its better to rest and I hope you havent picked up a bug or anything.
@threetree You and I were both going through the wringer at the same time, I hope you've also been sorted out and are feeling better, challenges with the drug companies notwithstanding!
Oh! I was talking to the on-call Sunday oncology doctor about these nodules that keep popping up overnight and oozing water and had she seen anything like it before. She actually had and said they usually pop up around areas of inflammed skin (yes, I have inflammed skin in that pelvic area) and I looked it up after she left and its called prurigo nodularis and the images on Google look exactly like what I have. So Im really hoping the biopsy comes back non-malignant. Also hoping they stop and go away too haha. But as a differential diagnosis that is up there. I have a chat with MO tomorrow and well I hope it isnt a Debby Downer of a chat. Im asking for less pain management too but then again I dont move much. However I havent really felt like I needed more after I have been moved so, please Tukysa be doing your work!
Take care everyone and have a lovely Sunday, mine is looking good with full sun through the windows (Ive got three this time!) and clear skies with mom coming by for coffee and gossip mid afternoon.
Op - @micmel I havent seen a THEO photo in a hot minute, if you are checking in every once in a while Id love an updated shot of breastcancer.org's most famous dog! I also hope you are perhaps on the upswing of your grief and processing it well. Take care of yourself please!
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Yesterday was a bad one. We made the decision to help our beloved Bella over the rainbow bridge. She had deteriorated rapidly in a couple days and we could tell she was suffering. It’s the hardest thing a pet owner has to do. But all our tears meant there was so much love.
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Goldens-So sorry for your loss.
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@goldensrbest I'm so sorry you had to make the decision to let Bella go, it's beyond heartwrenching. These pictures are a testimony of the wonderful life she lived with you. May she be running and jumping over rainbows with her pup friends. Big big hugs your way.
Mara Thinking of you this morning hoping your doing ok.
Irish So glad to hear your MO was livid with your situation and taking charge. You have yourself a wonderful MO and team.
sondraf Glad to hear things are looking up. I can hear it through your post and am so happy your heading in the right direction. Fingers crossed for benign and I certainly hope you have seen the last of them!
@micmel Thinking of you and your family, hoping each day is a bit better.
Will check in later on everyone. May it be a peaceful day for all.
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@goldensrbest so sorry 😢 for your loss. So hard loosing a beloved pet. Her photos are wonderful, she was beautiful. Many Hugs as you go through this.
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Hey checking in again..hmmm didn’t see you today @mara51506 hope your ok❤️
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Oh goldens, I'm so sorry to hear about Bella. Such a beautiful dog. Sending you hugs and comfort.
Sondra, it's good to hear that things are getting better, and having any bit of happiness is wonderful. Lorazepam is great, and it's nice to not have to have it. 😊
Irish, your post is heartbreaking and infuriating. Anyone who needs treatment ought to have it, and I'm so sick of these insurance companies and drug companies making huge profits, paying their CEOs millions... argh.
I'm trying not to worry about these new tariffs possibly increasing the price of our meds, or creating shortages of meds or saline solution for IVs, etc. It feels like one more thing that I have no control over in my life. Double argh!!
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@goldensrbest I am so sorry about the loss of Bella as well, she would have been surrounded by love with her family and that is so good for her. She will be waiting for you on the rainbow bridge and as people who loved her pass on, they will wait with her to all move on together. My condolences to all of you that loved her, that is definitely a hole in your heart that will fill but will take a long time to fill.
Sondra, I am glad you have had some better days and now in your pocket for the nodules now and that the Tucksya will do its work for you.
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@goldensrbest - We're so sorry for the loss of Bella. Losing a pet is never easy; they become such a special part of our lives and our hearts. We're sending you a huge hug.
The Mods
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Condolences for the loss of family member Bella. May the good memories help you with the loss. Hugs
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I saw this link on another thread and wanted to share it here since I know many of us are interested in exercise. I haven't tried it yet but hope to soon. I thought it might be very helpful for those who want to get going again with exercise.
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@goldensrbest im so sorry for your loss - those are such beautiful photos of a gorgeous dog who looks to have had a much loved and wonderful life. I know it will be hard now but giving her a good death is just as important as giving her a good life. Hang in there and the grief will eventually pass.
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@goldensrbest So sorry for your loss. The photos are lovely and are a good tribute to a beautiful dog. I know you lost a piece of your heart.
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Well, Trump backed down from tariffs against Canada and Mexico for at least 30 days which is good for Canada. Must have been surprised by the retaliation from both countries. Canada removed US booze but I am glad that it was put on hold, hopefully stays that way. Really hope neither country is hurt by all this, we do not need to worry about prices.
I did not do much today, mostly lazy I think. Even meals were lazy, a fettucine with chicken and pasta and meat pies with a couple of reese peanut butter cups, was yummy.
I am late to the party, was in pockets all day anyway for anyone who needed me.
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Thank you so much for all of your kind words and support in the loss of Bella. The first day was so hard but each day has been less so. It does help that we still have our Gamble and Mariah with us so the house is definitely not lonely.
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Well, I received the results posted of the MRI before I even completed the 30 minute drive home. There is increased size and number of metastases in both in my liver and on my spine. I feared this as my tumor markers are steadily rising. I have been here done that before, so I guess things will be changing. I will let you know when I know.
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Oh no, Intolight. Sorry for this development. Prayers for peace as you await your next treatment.
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Sending love, @intolight. This kind of news is never easy to process. Please let us know what your team recommends next. We're thinking of you and sending gentle hugs.
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Thinking of you, Intolight, as you process this and decide what's next. This is hard news to receive, even if we know it can happen at any time. Sending love to you.
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@intolight sending love and hugs 🤗.
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Well, woke up close to 12 noon, I sleep well but am bad for staying up really late. I generally send myself off to bed by imagining a video game where I can save my favourite characters different ways and drop off no problem and the sleep mask is good.
Ate a ton of baby spinach as a salad with croutons and some crumbled chips, used some caesar dressing, cleaned the bowl out. It was very good.
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@intolight I'm terribly sorry to hear about progression. Your team will get this right in no time. I realize anxiety is half the battle, so I am sending comfort and peaceful thoughts your way. You've got this!!
@goldensrbest Dear sweet Bella the beautiful. We are so glad you have had years of loving her and receiving love in return. Thank you for sharing her and the adventures your family had with her. I'm so sorry.
@sondraf Well it sounds like you are fighting the good fight to get home. So very glad you are starting to improve and feel like your old self.
To all. may you have a pain free and peaceful tomorrow and let all your worries behind you. In pockets for scans and sending love to this wonderful group of extended "family".
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Intolight - we are all here for you as you deal with progression. Praying that the next treatment plan will work for you🙏🏻🙏🏻🙏🏻. Cancer sucks.
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Golden's - I want to send these now belated condolences to you for dear, sweet Bella. (I've been extra fatigued and brain fogged lately, so not participating here as much and as "coherently" as sometimes right now.) There is just nothing that compares in any way to the loss of pet, and I'm just so glad that she was so loved and had you to spend her life with. I've really enjoyed all the pictures you've posted over time, and that last collage was especially beautiful. I want to thank you too for sharing her with the rest of us. She wasn't just a love and comfort to you, but the rest of us got some of that love and comfort also. I haven't had a pet now for years, so I really do appreciate it when pets like Bella are shared with all of us. (I live alone and given my situation I just can't bring myself to get another pet again.) I was glad to see that you said things have been getting better over time, and I am sure they will continue to, but there is always that place in our hearts that they remain in and that we miss forever. Wishing you all the best, and sending many hugs.
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@intolight Sending lots of love and strength to you in this weary time. I'm sure your MO is already getting the next plan together to beat this back. May the next plan kick cancers butt!! Hugs💕
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I reached out to Mel. She sends her love. She is still having some family issues. She said she would return "when the waters calm", her words.
I am reading along every day. I am monitoring Intolight's progression. And I love to hear what is going on with you all.
I am doing ok. Hunkering down right now, as there are many illnesses going around in my area of the world. Covid, influenza A, stomach bug, RSV, and strep throat. I know of several that are sick right now. And some area schools have closed down due to the number of staff and students that are ill. I am not going to in-person church but watching the services online. I mask up when out and wash my hands all the time. I had the stomach bug the beginning of Dec, but have not been sick since.
Next month is my routine scans, and, hopefully, cataract surgery.
Hugs to all.
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Candy - Thank you so very much for the update on Mel. Please let her know that we are thinking of her, miss her very much, and send our good thoughts and hugs.
I too am really pulling for Intolight and am also glad to hear you say that you are doing OK. Best wishes for your scans and possible cataract surgery, and thanks again.
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Intolight, I am sorry to hear of the progression and likely treatment change, in your pocket with support and love.
Candy, thank you for the update on Mel, we do miss her here but understand the stepping back, we understand you reading more than posting too and always in your pocket as well.
Goldens, still in your pocket with the other pups as well sending food for them.
I honestly am feeling better, I actually forgot to hit the post comment yesterday so I will fill you in for yesterday and today.
Laundry was the order of the day, yesterday and is today. Got stuff in the dryer. Got to clean my sink as well. Got some larger size bras which feel more comfortable on the mastectomy side under the arm. I choose not to wear a prosthetic so that causes the strap to roll over. My other bras were painful when that happened so went a size up and no pain, grateful for that. My cats will be happy as their probiotic arrived, I bought a ton of it, makes Tigger finish his bowl of food instead of leaving a bunch behind.
I made terrible a terrible meal yesterday. Cooked up some ground chicken yesterday that was gross. I did remove grease but added a pack of taco mix and the cheese that comes with the taco dinner bake. I did not enjoy it at all. I am thinking I will stick to real cheese and and eat up my eggs, cheese, rice and pasta and eat up some of the frozen pasta as an easy meal when hungry and do not wish to cook. Keep the taco seasoning for rice or other stuff and eat more egg sandwiches. Keep the beefless ground to act as the ground beef.
I do hope everyone has a good day and in pockets for those who need me, in my own pockets as I want to wash some blankets today and eat food I enjoy. I am thinking meat pies to start with a simple egg sandwich to finish.
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@candy-678 Thanks for the update on Mel think of her daily when I pop on here. Don't blame you for hunkering down there is certainly an uptick in many viruses right now. I'm sure you are eager to get past your next scan and on to your surgery. May time pass quickly for you .
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