My Husband, My Life, My Love, My Family, My Cancer

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  • eleanora
    eleanora Member Posts: 307

    Dodgersgirl

    You have fought so hard through very difficult circumstances. So sorry you are going though multiple sorrows at the same time. I hope all available resources are being used to make this is easy for you as possible.

    💔

    Love and hugs,

    Eleanora

  • goldensrbest
    goldensrbest Member Posts: 738

    Shana - love the great news on scans.
    Dodgers - there are no words to adequately express my feelings. I’m so very sorry that everything has been dumped upon you. I will pray for your strength as you navigate this road alone. I hope you feel all the love coming from this living room.

  • candy-678
    candy-678 Member Posts: 4,177

    Dodgers- I am so sorry. No words.

  • cookie54
    cookie54 Member Posts: 874

    dodgersgirl There are no words to express the sorrow that I feel for you and all you have been through. There is so much love here for you I wish we could be there in person to express it. I know it's not the same as actually being by your side but please know we are all sisters standing with you. I will be praying for peace and strength.🧡

  • chicagoan
    chicagoan Member Posts: 1,086

    Dodgersgirl,

    Such difficult news, particularly as you mourn your husband. I pray that the visitation and funeral service will be a comfort for you and that you will be supported by all the family and friends who also loved your husband.

  • threetree
    threetree Member Posts: 1,833

    Dodgersgirl - You and I haven't shared much together on this forum, but I do want to share my sincere sympathies for everything you have been going through lately. Know that I am thinking of you, along with all the other wonderful people here, and am sending out nothing but warm and peaceful thoughts for you.

  • mara51506
    mara51506 Member Posts: 6,565

    Dodgersgirl, you have gone through so much with your own troubles and losing you husband and now to find out you are going on hospice. I am in your pocket with all of us, we all are sending you love and support and if you remember anything else, remember our love.

    Mel, dog is adorable.

    Candy, I am sorry for your nausea. I hope that subsides soon.

    Shana, happy to hear stable, that is great.

    I slept 10 hours after very light, almost no sleep night before. Just doing laundry and the usual stuff, unsure what else I want to do. Part of me wants to go out for a mall walk, can use umbrella to stay of sun and possibly a neck fan. I can overheat in cooler weather, we will see. Can also brin my leg lifter as well, just bored.

    I was going to make a burger with an english muffin and peanut butter as peanut butter and beef go well together but for today, heated up some precooked beef and added peanut butter and a little salt, it was really good even without the english muffin. Very filling and full of calories I am sure but not too worried about, full of protein as well. Better than when I was eating peanut butter out of the jar.

    Everyone who has troubles, Dodgersgirl and Candy, sending warm thoughts to you both. Mel enjoy your dog and everyone else, I hope you have a good day.

  • cm2020
    cm2020 Member Posts: 530

    Dodgersgirl, I am so sorry. Just so very sorry. Many gentle hugs.

    Mel, Theo is precious!

  • intolight
    intolight Member Posts: 2,427

    Dodgersgirl, there are no words good enough to express deepest condolences. You are in my prayers for all your struggles. I pray God wraps His arms around you to help carry you through.

  • ninetwelve
    ninetwelve Member Posts: 328

    dodgersgirl, I am so sorry for your tremendous loss. There are no words adequate but you are in my thoughts.

    I've spent this week catching up on this thread, reading over a thousand posts. To all who are thriving and getting great news, I celebrate with you. To the ones with extra illnesses on top of cancer, and loved ones' worries on top of their own, I feel for you. I know well the good days and the bad. Some things are more than I can imagine. I can only sit in sympathy here far away at my keyboard.

    mel, thanks for hosting this forum. I had the terrible mouth sores last month and only a course of antifungals (Diflucan) was able to take care of it. I will never take a healthy mouth for granted again as the pain and debility was something I had never known before.

    With cancer in lungs, liver and bone, I had thought about giving up treatment, but have persuaded myself to try one more. On Friday I get the results of my most recent scan and talk to my MO about Elacestrant. Part of me wants to get off this merry go round and walk away from the circus, but the other part thinks, what if the next chemo gives me a year? Whatever… I guess I'm ready to gamble one more time.

  • candy-678
    candy-678 Member Posts: 4,177

    Nausea is better today (so far).

    When I first started on Lynparza the nausea was constant (for 3 months), until I did a dose reduction. Then, it was just a day here or there with nausea but gone for the most part. Over the last week it has been back to constant- with the tummy rolling and the increased saliva in the mouth. Like gonna puke, but then don't. Hum. Almost 2 years into the treatment. Why now? …..Thinking back, I have had other weeks that the nausea is worse, then gets better on its own again.

    Kind of like Mel's mouth sores, I guess. Mel has been on the same treatment for a long time, but the mouth sores still aggravate her. Maybe the Lynparza is that way too. Periods of worse side effects at times.

    I am just thankful it is almost noon right now, and tummy is ok thus far. I am going carefully on the food though.

  • bellelove70
    bellelove70 Member Posts: 38

    hello

  • bellelove70
    bellelove70 Member Posts: 38

    sorry I am trying to post under new name because of technical issues again. ( previously livingIvlife)

    I wrote a huge post and it disappeared! Will post again later after I quit swearing!

  • bellelove70
    bellelove70 Member Posts: 38

  • bellelove70
    bellelove70 Member Posts: 38

    I try to write my comments but it keeps disappearing! what am I doing wrong!

  • bellelove70
    bellelove70 Member Posts: 38

    Due to technical issues again I had to start over under new name (previously livingIVlife)

    I could only lurk but not post. I am so sorry for this.

    Dodgers- there are no adequate words to express my deepest sympathies for the loss of your husband and the struggles you are facing. We are not there physically but our arms are wrapped around you.

    Irishlove- the struggles you are also dealing with are tremendous. Your strength and faith will carry you through

    Mel- I was so happy to see you finally got a furry friend. Theo is adorable!

    Candy- hopefully the nauseous symptoms will ease off

    Mara- be careful when walking. Do not attempt walking in heat!

    Emac- so much has been thrown your way so quickly. This beast does not rest. We just need to keep fighting it.

    I know I have not mentioned so many of you wonderful ladies but I am in pockets for good news and the bad.

    I read of sadies passing. Too many too soon. Love to all of you.

    Debbie

  • bellelove70
    bellelove70 Member Posts: 38

    ok I am going to try again. LivingIvlife is now under bellelove70 .

    I have been able to read along but not post so I am on new laptop.

    Very sad to learn of Sadies passing although over time we had suspected . Rest in peace

    Dodgers- there are no correct words to express my deepest sympathies in the loss of your husband and in the daily struggles you are facing. I hope you can feel the warmth of all our hugs surrounding you.

    Emac- you are also dealing with struggles that have been thrown your way so quickly. This beast does not rest. We are constantly fighting it. Im in your pockets with you.

    Irishlove- dealing with MS and cancer takes strength and determination which you have. Your strong faith will see you through this.

    Mel- I was so happy to see your new furry friend. Theo is adorable!

    Shana- yay for scan results

    I know there is so many of you wonderful ladies I have not mentioned but I am in your pockets for good news and the bad. Me and Belle (my furry friend) wave hello. Want to send picture of her but do not know how yet through this new laptop. No techie in this house!

  • moderators
    moderators Posts: 8,744
    edited August 2023

    @bellelove70 (LivingIVlife) — The reason your posts disappeared is because they were picked up by our auto-spam detector as spam because it must recognize you have another account — we have restored them. Can you please check your email as we have been trying to get in contact with you about getting you access to your other acct.

    Thank you!

    —The Mods

  • bellelove70
    bellelove70 Member Posts: 38

    I apologize for this crap. I am losing my mind. The short comments will appear but not my long ones. I will go swear again, take a deep breath and have a glass of wine.

    livingIVlife

    Debbie

  • tanya_djamila
    tanya_djamila Member Posts: 1,542

    Good evening all

    Shana girl congrats on results!!!

    Dodgersgirl sending hugs and support for the heavy load on you.
    mel Theo is so cute. The call on Monday some of the ladies showed their puppies there were three and they all looked like Theo.

    Mara this heat is brutal. Here in FL it starts in the morning. It has inspired me to swim and not much else.

    I love the fruit in the summer. Had some great delicious peaches yummy.

    My pineapples are all ripe at once so I’ll be freezing some if they don’t disappear 🫠.

    Livingivlife belle I wrote an entire signature thing so many times. I don’t drink but if I did that aggravation would’ve had me there.

    Take care all

    Waving hello to everyone.

    Tanya

  • irishlove
    irishlove Member Posts: 599
    edited August 2023

    @dodgersgirl My heart and prayers are with you and your family. I did want to mention there are for profit and non-profit hospice programs with varying degrees of assistance. Frankly I wasn't too impressived with Genteiva, a for profit. Please have a good steadying hand to help you before making any decision….. I know some choose to stay home and perhaps with a non profit they can make that happen? Avail yourself to all the medicare programs and don't let them discourage you. I hope you have a comforting service with your dear sweetheart and bless the life the two of you had made togeth

    @shanagirl Yaba daba doo, hurray for you stable scans. You rock. Keep it up!

    @micmel Oh my gosh you and your puppy are so young and sweet. May you have many years of joy

    @candy-678 I wonder if a coating of maybe (husband uses buttermilk, not my cup of tea, or milk of magnesia, something could give you a hand up on this naseua. Here's Grammy SParr trick. She would buy Italian roll and cut it and literarry charcoal it over the gas burner. Now I gotta have butter on it, but maybe go with a light butter. It absolutely settles my stomach every time. Guess it's the charcoal effect? In the heat of summer, DH claims the buttermilk coast his stomach to stop nauseau. DD swears by almond milk. I hope you find relief and fast.

    Waving to all that were so kind to respond to my b.c. and b.s. The pet scan went awful. Got in at 11:30 yesterday and waiting two hours. They sent me home (after two darn sticks) due to not having the meds required for the test. The pharmacy is not owned by hospital but they managed to procure enough for early appts., ran out at my turn. Yeah I did the old boo hoo., but hey I felt absolutely awful and of course you have to sike yourself up and I need to take atavain to get in that machine, so wasted two doses. Finally got back an appt. this morning and finished pet scan. hope it registers in time for MO to see at my appt. tomorrow afternoon.

    On a lighter note, MO came thru with a nasal spray to the brain that works on complicated migraines. OMG it lowered the intercranial pressure to about 25 per cent today. Still dealing with numbness, weakness, some head tremors but that what I call "stroke" like feeling is much better. I started with severe tinitits 7 years ago related to MS attack. We tried shots in the ear drum all to no avail so it's lost hearing. Left ear start recently and that's why I am pushing to save that ear.

    Now for the GP. He listenend carefully and contracted a neuro friend locally, who gave me an cancellation appt. Augt 15! No more 8 minute man. I will probably keep the EEG, and of course the MRI was done by MO. I finally have a sense of hope that I can heal enough to start rads soon. Slept decent last night, ready for more ataivan to sleep tonight. See MO tomorrow and hope pet scan is ready. Get labs and zometa infustion. The heat index will once again be 112 degrees. Our record high was 99. I go out to feet critters, and water plants and make sure to leave bowls of cool water. Everyone laughs at me, but I spray down the whole pool enclosure so anahole and lizards can get a drink, too. The crows are coming by with mouths wide open suffering. I had a large bowl for them and smaller bowls for the squirrels. It's just brutal and my dr. appts are tomorrow starting at 2, the worst of the day. Stay cool.

  • emac877
    emac877 Member Posts: 688

    Dodgers - like most have said I don't have the right words. Praying for you and for someone to step in and advocate for you with medicare.

    Shana - Yay for stable!!🎉🎈

    Tomorrow is a long day for me. I see the MO at 8 and have chemo at 9. Then I go back to meet the RO and find out more about the SRS for the brain mets. I have had a horrible time with my blood sugars on Piqray. I have had fasting sugars over 300 and tonight they were 514 despite being careful with my diet. I met with my PCP today and am starting on Jardiance in addition to Metformin but I may need to advocate for sliding scale insulin if this doesn't get better soon. The Piqray seems to be working as my breathing is almost normal so I don't want to give up on it yet.

  • eleanora
    eleanora Member Posts: 307

    Candy678

    So sorry for the nausea, but glad to hear that it's improving. I know how miserable that feels. Sucking on small hard candies helps me.

    Irish

    So glad you were able to have the PET scan after the screw up. Hoping for good results Yay for the MO with the nasal spray and the GP with the neuropathy buddy. Sounds as if your med team is giving you the attention you deserve. Fingers crossed that it lasts.

    Emac877

    Sorry the blood sugar is so problematic. Hope Jardiance helps. Fingers crossed that RO has a good plan for the brain mets.

    Ninetwelve

    Looking at your signature, I see that you have been fighting this beast for nine years. No wonder you're exhausted! Hopefully your treatment break will allow you to weigh the pros and cons of continuing. There are many here who have used treatments that may be recommended to you and can share their experience, but ultimately the choice is yours.

    My RO likes to use a sports analogy (of course he's male🤭) for my treatment team. He says that my MO is the quarterback who directs everything and he's a running back assisting her, to which I reply "yes, but I own the team". We are here to support you in whatever path you choose.

    Hugs

    Eleanora

  • cookie54
    cookie54 Member Posts: 874

    bellelove/livinivlife Ugh what a PIA!! Hope this is it and you can move along here easily.

    emac Stinks that Piqray is running up your blood sugars. Wish these drugs could just do their job without stirring up the rest of our systems. It seems to be a good weapon in the arenol after the blood sugars are steadied. Fingers crossed that additional diabetes meds will get a hold of this. In your pocket today for treatment❤️

    irish Sorry about the PET experience hope results are back quickly for your appt. Glad to hear you are finally getting some direction on the Neuro end and yaay for quick appt next week! Love that with all you have going on you are taking good care of the critters, so sweet.

    Eleanora Ha love that you "own the team" lol, great response !

    Tanya How nice, fresh pineapple..sounds delish! Definitely a nice perk living in the warm climate.

  • eleanora
    eleanora Member Posts: 307

    Cookie 54

    Thanks for loving my comment to the RO. I know that the Drs we see are very busy, but I feel as I move through this process that they ignore that they're treating complex human beings, not just bodies on which to try various treatments. I try to periodically remind mine of my autonomy. 😉 Have received varying responses, but it makes me feel better.

    Hugs,

    Eleanora

  • mara51506
    mara51506 Member Posts: 6,565

    Emac, glad your breathing better but yeah, sucks about the high sugars. In your pocket about the Jardiance working for you.

    I am doing a double load of laundry, one load in portable washer, other load with wash wand in 5 gal bucket. That one is being soaked in a lot detergent and oxyclean as a white item got a terrible spaghetti sauce stain on it. Keep pulling the shirt out and washing it with soap and water as well. I will get it out.

    Not hot weather but I want to get out, I need to practice getting over the pipe that has been laid out in front of the house. Made me too nervous when took out garbage last night. I did not fall nor come close. Probably have to look up a meditation to work on that fear or getting rid of that fear of falling. PT is working for me, balance is better. I really want to get myself off the floor in practice but have to wait until someone else is here. Also going to look up spatial awareness exercises that would probably help me with just that problem of stepping up and over things.

    Going back to more normal food again, finding that I really did not like the peanut butter and beef. I think the beef is too bland so need to season and find other ways to eat it. Going to have a couple eggs, add some beef in the eggs and put in the sandwich maker. Beans for later, putting some potato chips in the spice grinder for a different seasoning to add to things. The eggs were fine but not great. Not sure what I will add to the diet to spice it up a bit. That will take some research. I know bing has a way to ask what to do with certain ingredients that you have.

  • sunshine99
    sunshine99 Member Posts: 2,723

    Good morning, all. I slept better last night and didn't start coughing until this morning.

    emac, I don't even know what to write. This so sucks!

    irish, what an ordeal, to put it mildly.

    eleanora, good comment about owning the team. My first MO said she was the quarterback. Now I have no idea who the quarterback is. Hopefully, not I!

    Waving hi to everyone. I see you, even if I don't mention you by name.

    Love to all,

    Carol

  • sunshine99
    sunshine99 Member Posts: 2,723

    bellelove (living), I saw your first post, and thought you were a spammer. It was your first post and something like, "Hi, how are you?" Sorry for judging you so quickly! LOL

    I'm sorry you had to change your name but hope you get up and running again,

    Carol

  • aoibheann
    aoibheann Member Posts: 259

    @irishlove , am new to this forum but noticed on your post that you were px a nasal spray that worked to ease your migraine. Could you let me know what it was, please? I suffer with really bad migraines - dreadful headache, nausea, vomiting - and I can't tolerate any medication. I've had brain scans and although I have mets on my skull nothing is showing up on the brain 🤞. So if there's something out there that works (without needing to be ingested) I'd love to try it.

  • micmel
    micmel Member Posts: 10,060
    edited August 2023

    living ~ sorry you’re having issues. Hope you can get your other account back.

    Aoib~welcome to the room hope the migraines leave you alone. I’m sorry you’re having a hard time. Sending good thoughts.