My Husband, My Life, My Love, My Family, My Cancer
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I’m sorry Mara what a shit deal that is I have you on my mind. I Am sorry db isn’t stepping up for you. I’ll say some prayers.
i have gotten Covid, I’m so sick this horrible wouldn’t wish this on anyone. I knew I was going to get it from DH. He is the one who takes care of me. This Covid thing is for the birds. It hate it!!!!! Add in cancer. and you’re whooped Ugh!!!!!! I’ll check in when I can make sense of things.
irish~ that ibrance thing is really becoming ridiculous I’m so mad my pharmacy made me take it in to dispose. Since I switched doseage. It’s always something.
hello Elenora! Love to all.
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Micmel-Hope you don't get too bad of a case of Covid. Are you going to take Paxlovid? Hope you feel better soon.
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Mel Wishes for a mild case and speedy recovery for you and DH….. feel better.
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Mel, I'm so sorry. COVID sucks any time. I hope you start feeling better very soon.
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Mel, I am so sorry you have Covid. There is never a good time to get sick on top of what we go through everyday. Praying for a minor and quick case.
Mara, sometimes family dynamics stink. So, so sorry you have to battle them on top of it all. You know yourself and your limits. I am so glad your OT was there and could help and was supportive. My OT really helped me and I do the bridge post too along with other things. Sometimes we just have to advocate for ourselves.
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Oh Mel, poor baby 😔.
Hope you get whatever meds you need and just cocoon yourself.
Thinking of you!
Eleanora
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Waving good evening to all my sweet friends here at Mel's place. I sure hope you are having a pain free and nice evening. It gonna be cold again, in low 40's. DH and my BFF, and myself went to early bird dinner with a view of the ocean. We all dressed in winter clothes, not that we have that many. DH wears bermuda shorts all the time, so he grumbled about having to unload his stuff from shorts to long pants. It was good to catch up with BFF. She has sceleroderma and heart problems, so young. Plus her roommate is quite ill.. If she loses her roommate, whom owns the home via a trust, she has no place to go and very little money. DH promised her husband on his deathbed 9about 11 years ago) we will take her in and love on her. She has no children, but step-children and elderly parents up north. As many health issues as we have, we don't have to worry about a roof over our head. For that, we are grateful..
Since the groundhog said we will have an early spring, I started spring cleaning today. Most work I've done since being diagnosed and I'm not hurting too badly.
@micmel I'm so sorry that covid has made you and DH so ill. Paxlovid helped me, but you must start it within 5 days of symptoms. Haven't heard back from Pfizer. nervous…
@mara51506 Sounds like cooler heads are prevailing and that is such a good thing. I know you love your brother and need him in your life. Keep ignoring the elephant in the room and keep up the good work of exercise and eating.
In pockets for scans and all your needs.
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Thank you ladies. I don’t know what has hit me. This is just plain awful , I’m not a candidate for the medicine because of my pain management regiment, it will react with narcotics. So I have to suffer it out. As you know. You can only lay down so long. I’m getting so irritated at everything. I’m so disappointed to have gotten this. I had a good run without. It. I keep thinking. Thanks China! Back to try to sleep! I’m thinking and praying for you all, I’m sorry about your bff. It seems things like that should not happen. No one should worry about losing a home. Period. It’s crazy. Definitely not fair or conducive to helping an illness. Life is so hard sometimes….. love to all
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Mara, I would definitely blame the flu for waking up on the floor. I had it my freshman year in college and spent a week in the infirmary inpatient. I barely remember being there. All I remember is waking up with my pony tail soaked to the end.
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Mel - sending prayers for a speedy recovery. So sorry you can’t take the paxlovid.
Mara - I’m sorry that you’re feeling angry again. Try not to let your family make you feel this way. Easier said than done, I know. You have great coping skills so I know those feelings will be short lived!
Wishing all you wonderful sisters a weekend of comfort and peace. Looking forward to some low 50s this coming week. Our mountain range of snow has melted enough that we can finally see the house across the street🤣0 -
Mel - So sorry to hear about the Covid. It's a doozy this year. It took me a good three weeks to feel like I was over it.
Mara/Eleanora - It hurts my heart you guys don't have better support from your families. I complain that my mother hovers too much and is too opinionated about what I should do but I don't get shouted at or hung up on and never do my parents/DB act like I am a burden. In your pockets as you deal with your situations.
I saw my MO on Thursday and am going to be starting Enhertu. I am HER2- but technically HER2 low and FISH negative so the MO says that the current thoughts are it will work for me. I'm excited that I still have options. I know it's worked well for others on here. I spoke to the RO yesterday and he wants to hold WBR until we see how the Enhertu is working. It crosses the blood brain barrier so it will treat the brain mets as well as the lungs and liver. I am okay with that. As much as I would like to do both to just blast those baby's away I was advised that is not a good idea. I also got pulled off Faslodex which is fine with me. No more shots in the butt is great. Now I'm just waiting for Tuesday the 6th so I can get these pleural effusions drained. I am having to be on oxygen 24/7 and can't even walk to the kitchen without huffing and puffing. I didn't realize how much energy I expend just doing little things around the house until I didn't have the air to do them with. Things are looking up though. PEs drained and Enhertu started I think I will feel a world different.
Sending virtual hugs and well wishes to all in the living room.
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Oh Mara. I’m going to wrap you in a very heavily masked hug. I’m so sorry you’re this upset. Family has a way of sticking it to us sometimes. Let it out honey. They will come around. Sometimes life is just plain mean and so can people. Maybe you need to just have a quiet talk with him alone. And let him know how much you do rely on him. Hold nothing in. Where does that get you? I’m thinking of you. I’m pulling for them to snap out of it
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Mara Sorry this has been so upsetting for you. You are such a strong person in so many ways seem unstoppable to me! We all admire your strength and willpower so I know in my heart you will be able to move past this in time.Maybe if you want need to get your emotions out write all your feelings on paper, sometimes that helps. I'm sure when everyone calms down and emotions settle you will be able to have a better conversation with your DB. I stand with Mel maybe just start with your DB alone if possible. In the meantime know that they absolutely do love you! I think emotions were running high at the time and hurtful things were said.
So for now just focus on you and your mental well being. By Monday if you feel the same as you said reach out to request a social worker. Big warm hugs from NJ❤️
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emac. Glad you have a new plan in place…let's go Enhertu knock this crap back!!! Yes once you get some more breathing room and get drained I"m sure you will feel much better. Happy to hear you are finding hope, makes me smile. Cmon Tuesday…
mel Hope your feeling better each day too.
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mara, I'm so sorry… Have you ever sat down and written a letter, letting everything just spill out with language as strong as you need to use? You don't even need to send it, but maybe just writing it would help. I don't know if that would help, but it just might.
You are loved here no matter what happens with DB and SIL.
Carol
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I have deleted a couple of posts because if I want to let go, need not keep ranting. Long and short, we disagreed over treatment, hurtful remarks given, I need to get over it or lose family period. Not ready for that. If brought up again, will say I don't want to discuss it and leave it at that.
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Gosh Mara. This all stinks. I've always felt bad for people so alone in the world. And there are so many that need help.
My only advice would be to not contact them yet. Give them a break for a while.
I've been a caregiver for 20 yrs. Recently moved him to a group home. He's mad at me about it. No more daily/hour long phonecalls. But not hearing from him daily to complain is wonderful. He's adjusted. But I'm still here just like they are. When something important comes up call then.
Distract yourself with your shows/commercials and exercise...
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Thank you, think some Curb Your Enthusiasm is in order. I love that show and I am planning to let them contact me when ready. Exercise is definitely a good one as well.
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Sunshine, I think I did write that sort of thing when it lived briefly on FB but did not name or say what was going on and just said people. I decided that the more I focus on the hurt or life in general, made me more depressive, deleted the facebook post too. I just need to let my feelings go and move on. I plan to stop mentioning it and just going on to regular stuff again, enjoy what I do have and forget things.
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Up earlier today, feeling better about everything. Not sure what today will hold, I do have the mayo that I basically paid half for coming from Amazon, beyond that, I am not sure. I am thinking about my taxes and getting them done, they are not complicated and have a program that fills out my info for me, 40.00 but that is not a bad price at all. Other than that, taking it easy, already did bridge pose. I discovered that by increasing my pull strength using the bed ladder to sit up, it will make it easier to carry stuff like litter myself, nice benefit. Actually trimmed bio hair that was getting long by my ears with scissors. I like the dar contrasting the blonde with darker roots, makes the wig look more natural.
This morning, just doing laundry, normal amounts now, planning to make another egg mcmuffin, possibly put beans or pre cooked quinoa in the egg and a hashbrown. Should be good.
I hope you are feeling better today Mel and everyone who may be unwell or dealing with issues. In pockets for everyone, thinking about Emac. Have a good day.
Edited to add, somehow making myself happy which is good for me. My thoughts seem happy, I am looking forward to eating meals and doing whatever else today.
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mara, I'm glad today is feeling like a better day.
Our kids are heading home today. They drove down for the weekend and had an appointment with their OB doc on Friday. I love having them here. Baby is 21 weeks.
Hoping everyone has a decent sort of day and is (or is improving) with those nasty bugs. We're expecting more rain here. Some estimates are around 3". That's A LOT for San Diego/Southern California.
Waving hi to everyone in the living room.
Carol
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mara, I just had another thought. There was a time (more than one, sadly) where my sister (who wants "no further contact" with me) was being a total b!tch to me. I went and wrote in my journal, but since I happened to be taking French lessons at the time, I wrote it in French! There's no way she'd ever be able to read it, should she get her hands on it. It's a relief to have no contact with her.
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Sunshine, that is a clever thing to do. My FB post which did not say which people I had trouble with got me two messages from friends from a while ago. The funny thing is, I typed out whole scenario from flus, falls and disagreements and felt nothing toward it. I honestly feel nothing as I am typing and that is weird but wonderful. I know we will see each other soon, they cannot escape the promise they made to my mother to look out for me. If they come and take me shopping, mentioning nothing unless brought up. I did get rid of the post as it would cause drama and not solve issues period.
I am also feeling muscles building in arms from the pull up ladder. That thing helped me pull myself up from the echo bed as well, might help with the cat litter as well, who knows. Need to get wall pushups done too. Just feeling better not being upset. My arms are pulling up a great amount of weight so liking that.
Congrats on the Grandbaby on the way and enjoy your visit.
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Emac, I am sorry you have someone, DB acting like you are a burden, that certainly sucks considering how much you are going through with both body and brain affected. He should try out everything you are going through and make that statement later. What a jerk. At least my DB SIL never acted like I was a burden, I give them that.
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Emac, it's really good to hear that you can start on Enhertu, I know two women in my local support group who have had a lot of success with that medication. Definitely hoping for that outcome for you!
Mel, hope you get through the symptoms of covid quickly. Ugh, it's so frustrating to get sick on top of everything we're already dealing with.
Mara, I agree with others about giving it some time with your brother, as well as standing firm about what you want in your own life. Your OT is the expert, and YOU are the expert regarding what you need/want. It makes me shake my head when anyone gets upset with us for making the best choice for ourselves. Sending you love and support.
Sunshine, how's your throat/esophagus doing post-radiation, hope the swallowing is getting easier. We watched an old episode of Young Sheldon where he was only drinking food that his Mom put in the blender... like peanut butter and jelly sandwiches. Hmmm.
Almost one week out from spine surgery, taking it very easy, walking slowly around the house, playing card games with my Mum and Auntie, trying to remind myself that this will take time and not get too frustrated. Or bored.
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sf-cakes, glad you are doing so well post surgery. Keep walking!
Mara, praying you continue to do well with the PT. You are your own best advocate.
I am in excruciating pain from the faslodex shots. The nurse must have hit a nerve. I am ok as long as I don't move, but of course I need to get up occasionally. The Norco meds don't seem to help any at all. I would soak in the tub but I could never get in and out…
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All you precious ladies. We are a tight bunch. I’m so thankful for you all
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Well, not my day at all ( that's an understatement). Just got back from the ER, where I went for chest pain and fatigue. They found more mets in a couple of ribs and sternum. Sternum also has new hairline fracture ( had another fracture there last year). I'm just fried! I've only been on Verzenio and Fulvestrant since last April/May. I'm afraid the drugs aren't working. So many get years with these. The ER doctor says while it's out of his area, he's wondering if they can't just radiate some these new spots and then maybe things won't be quite so bad. Probably just trying to make me feel better - a very nice and kind man. At least I know now why I've been feeling so crappy lately. So exhausted, haven't eaten anything since early this morning. Going to find something to eat, then have my first glass of wine since Christmas, then go to bed and cry my heart out. I love you all!
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@threetree So sorry to read about your new mets. At least now you know why. Crawl into bed. I am sending virtual hugs and love.
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Intolight - Thanks so much for the nice thoughts. I can actually feel that hug, and it's really helpful! I'm going to try and wait to see what the oncologist says and his take on the CT report. I re-read what the radiologist wrote and I can read it both as if he's referring to old stuff from the past being visible now or new stuff. Maybe combo of both? The ER doctor only interpreted it as new stuff , so I think I could really use the oncologist's input before totally caving. I assumed the ER doctor and radiologist talked, but not sure. Maybe this was strictly the ER doctor' interpretation of the report. Holding out some hope and sending you a return hug too! ( Having that glass of wine now and it's hitting the spot.)
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